Ulcerative Colitis in 2010

All is Well.........

2012-01-09T07:56:00.001-08:00

I almost hate to actually say "all is well" but considering what I have been through this past few years, I actually feel like it is. My third surgery of 2011 was December 20th and with the exception of the nurse that couldn't seem to get my IV line in (took 3 tries), all went extremely well. The surgery itself was only 45 minutes. I had two weeks off work and am now back full time which is a little bit much but I can already tell it has made a difference. I don't have that pulling pain I had before on my bottom every time I sat for any length of time.

This year, my goal is to stay out of all hospitals and emergency rooms, to lose some weight and try to gain some measure of health.

Blood Issues

2011-12-15T09:45:00.000-08:00

It has been a tough week so far. My surgery is next week and things have been....well challenging . I got my period last Monday (11 days ago). No biggie, plenty of time for it to go away before surgery right? WRONG. Last Friday, it even kicked it up a notch and got extremely heavy (like haven't been this heavy since high school heavy), then Monday, it kicked it up ANOTHER notch. Now we are trying take a shower and get ready for work and the bathroom looks like a scene from a horror movie. Just dumping out. Now I know, it can't be like this for my surgery and this is NOT normal so I call the nurse on line who tells me I have to come in. I see the OBGYN on call and she listens to my symptoms and tells me this is indeed NOT normal and wants me to get an interior and exterior ultrasound right away and double the use of my current hormone pill. So, Tuesday I go in for the ultrasound. Results are good, nothing looks to be out of the ordinary. "whew". Unfortunately, the blood flow still WAYYY out of control. Wednesday 5am as the blood is pouring out of me, I am on the phone with the Triage nurse. She is concerned and wants me to go to ER. I've been burned on this one before. I know there is nothing they are going to do in ER to help me and I am not paying $250.00 copay for nothing. So, she has the on call OBGYN Dr. call me. I explained all that had been happening and she said she could give me a pill that is supposed to stop the blood flow in one or two days. Cool. Now we are talking. All are happy. I picked up the pill after my pre-op apt. yesterday and took the first one (you take two a day). This morning I woke up and almost NO blood from the night time. wheeww hooo. it is working. After breakfast, I took my second pill (first one for the day), by 9:00am, I can feel the cramping come back and the blood pouring out. UUUGGGG It doesn't seem quite as bad as before but still there. SO frustrating. If I am still bleeding tomorrow morning I am supposed to go back to the DR. Please, please PLEASE make it STOP!!!!

Next Surgery Date

2011-12-02T09:18:00.001-08:00

My next surgery will be Tuesday, December 20th. 18 days from today. I have to say, I am little anxious about it. Last time I kind of freaked out just before I went into surgery. Let me explain why. Part of it was that the first surgery, although the surgery itself went well, they took them almost a whole day to get the pain under control and being at a high level of pain for that amount of time is extremely hard to deal with. Then, the anesthesiologist was a butt head and kept saying that I am choosing to die (cause I won't take blood). Yah, cause that's why I am doing all these surgeries, so I can die. He would not listen to any of the many alternatives to blood transfusions either. It was unnerving and by the time they were about to wheel me into surgery, I was so anxious I almost jumped off the gurney and told them to forget the whole thing, I am not going in. Thankfully a dear friend and elder in our congregation noticed something was wrong and asked to speak to me alone. He was very calming and as he said a prayer with me his words slowly took away the anxiousness that I was feeling. Now, I am afraid that anxiousness will come back and he won't be there to soothe me. I am trying real hard not to think of this incident but it keeps coming to mind. I guess the next couple weeks, I need to work on relaxing and letting it go. I have made it this far, I can do it one more time. I just got to breathe.....

About that

2011-11-21T10:48:00.000-08:00

Remember last month when I said I had a minor set back. Well..... technically, it is minor but (I just love using that word now) I saw my surgeon today and it seems I need to have a revision of the perineal scar. What that means in laymans terms is, they have to go back in and readjust the scar tissue on my butt so it doesn't pull so tightly. It has been causing me too much trouble to just leave it and I would like to live as normal of a life as possible (as normal as you can be with a bag of poop attached to you and your butt sewn shut).

The surgery has not been scheduled yet but (there it is again) I will get it done this year as my out of pocket has already been met. We are looking at mid December. Soooo, I tried to stay out of the hospital but (wow, one more time) it seems to keep beckoning me. It will be a in/out surgery so I can rest for two weeks at home afterwards.

I will keep you posted on the official surgery date.

Minor Setback

2011-10-11T16:06:00.000-07:00

As I said in my last blog, I am starting to be more active. I notice the last few days my bum was getting sore. Last night when I went to squat down to do cat litter, I felt my bottom ripped some. Now the doctor had told me this could happen and not to panic. So I didn't panic. I did however feel it get much more sore after that. I could now feel some pain walking and alot more sitting. I decided I better put put something on it so I don't get an infection so I did that. It is better today but still sore. I will just have to keep putting salve on it and cool it on the squatting. Over all I feel this is minor and there could be much worse things like ending up back in the hospital. I still feel like I am doing pretty darn good so I will just keep on a truckin'.

Slow but Steady

2011-09-21T09:40:00.001-07:00

An old friend called me today and asked me how I was doing. I thought for a minute and it occurred to me that I was doing well. Really well. Some things are still hard for me but overall I am recouping and every day gets just a little bit better. The energy level is good, the stamina is slowly improving and overall I actually feel good. Little improvements every day. My hands are not quite so numb and can clean the house for an hour before getting exhausted. I am running more errands and in general getting more things done and getting out and having more fun. This is the first time in years that I actually thought I might have a chance at some normallicy. Up untill now I just wasn't sure. Now I am and it is a GOOD feeling! I still have a dozen different things wrong with me but for me- this is normal. (-;

The B12 results

2011-08-29T13:35:00.000-07:00

o.k. I know you all have been waiting so here it is, the B12 shot results. That Friday that I got my first shot I ran a few errands on my way home from the shot and then took a nap. Then I went to an outdoor concert and I made it a whole hour. That seemed pretty good to me. The best part is I didn't get sick as some people said could happen the first day or so. The next night (Saturday), I went to another outdoor concert and made it two hours and felt fantastic. This time I really felt the shot had done it's thing. The third night (Sunday), I pushed it and went to another outdoor concert and was tired by the time I walked one block to get there. I made it an hour but sat 90% of the time. I have more energy but still don't have stamina. That will take a lot longer to achieve per my doctor.

This past weekend I took Friday off and went to the state fair. Yes, I dared go there. I did have to rent a scooter and even then only made it half the day but had a great time and I was OUT. Saturday, I went with some friends to a wine tasting, then out for ice cream and Sunday I got to go out on a lake for a boat ride.

During the week, I am still pretty much wiped by the time I get home from work so I don't do much then but getting through a full day at work is getting easier and easier to physically handle.

I think what I have learned is that the B12 definitely helped me with my energy level but stamina is a whole other thing. At least I can do more, just not for long periods of time. It still feels good to feel good and to get out. I feel like I have been trapped at home for so long and now if I have the opportunity to do something I am going to DO it. Slowly, my stamina will get better, I will just have to be patient for that.

Energy

2011-08-19T05:42:00.000-07:00

So I am doing O.K. I am still pretty much exhausted when I get home from work but manage to get a few things done around the house every night so the house stays clean. There have been quite a few times where I pushed it too far like Wednesday night when I decided I could grill 360 brats and 240 hot dogs in one night to bring to work for a tenant picnic the next day. Honestly, I have never done it and I have two grills so it didn't seem that hard of a task. I even had a friend come over and help me. We boiled all the brats first as we were feeding 450 people and I could not risk something not being fully cooked and someone getting sick. I think it was when the stove started on fire when I realized I was over my head. By the way, storing the baking soda in the cupboard over the stove is not the greatest plan. When the stove is on fire, it gets tricky to lean over stove to get it out. I ended up taking the one out of the freezer and ripping it open and dumping it on the stove. Still today, I don't know if that burner is going to be o.k. and I really need to open up the stove to make sure I didn't melt any wires. It was a 20 second fire but the stove had gotten REALLY hot! Anyway, I had a chair in the kitchen and a chair in front of the grill as I couldn't stand that long. We finished at 9pm at night, my kitchen looked like a bomb went off in it and I really didn't care. Took a shower and went to bed exhausted. I did not sleep well as every part of my body hurt! The good news is the picnic was a huge success. I pushed it yesterday too as I was in charge of setting it up. It was fun serving food to our tenants. I had to sit while everyone else stood as I just don't have the stamina or energy to stand long.

This brings me to the energy part. As my chatty cousin Tami says, I need to get vitamin B12 shots. She has had ALOT of surgeries and one just last week and she has more energy that most of my freinds who are totally healthy. Granted, she has to be careful but she is alive and vibrant. I want that! My surgery was over 2 months ago now and I don't have that kind of energy. My doctor said it might be a good idea for me to try the shots and see what happens. Tami, I am expecting a miricle so I hope it works for me as good as it does for you! It's not that I don't "feel" good", I just don't have much energy to do anything yet. I get my first shot today. We'll see how it goes.

Signs of Healing...

2011-07-27T10:05:00.000-07:00

Although my bottom still needs some more time to completely heal, I am feeling good. When you haven't felt good in a long time, you really notice when you start to. Sometimes I can't sit still at night so I get up and do stuff around the house. This is a bizarre feeling to me as I haven't been restless in years. This week I am cleaning my house entirely. Granted it is taking me a week instead of 2 hours to clean the whole house but it is a good feeling to actually do it all myself.

Feeling good and healing has had one bad side effect..........(male readers, prepare) after four years of absence, I got my period yesterday. UGGGGGGGGGGGGGGG It was the only nice side effect of being sick. I am SO not happy about it either. I was sure I had went through menopause. So I guess I should be grateful cause this is a sign my body is healing and getting back to normal. Begrudgingly, I am thankful. It is nice to feel good again and I wouldn't go back for anything. By the end of this year I plan to be well on my way to healthy!

So I will keep on trudging on. I am at the other side of the hill now and it only gets better from here.

Clean up on Isle 7

2011-07-13T09:52:00.000-07:00

It has been 5 weeks now and my bumm is still sore. Wanted to make it up to my moms house last weekend so I left work early Friday and figured I could stop as many times as I needed to rest my butt. I went for an hour which is alot for me and stopped to get gas. I wasn't quite ready to sit and there was a quilt shop down the road calling my name. I figured that I could walk around in there for a while before sitting down to drive some more. I had to go to the bathroom when I got there so I headed to the back of the store as soon as I got there. When I took my drawers down to go pee something was not right. Poop started falling to the floor. All I had with me was my purse and thank goodness a small amount of hytape (for attachment to your skin) and a baggie full of baby wipes. I was going take the baby wipes out as I hadn't needed them in 6 months but this incident proved why I need to keep on carrying them. I wear a two piece pouch and the top had snapped off and poop just filled in beneath the bag, through my underwear and almost through my pants. My shirt had concealed that anything was wrong. For a second, I considered crying. Then I decided just to pull myself together and deal. The restroom had paper towels but only a few sheets. I took out my baby wipes and just kept wiping till I got most of it off and in the garbage including the piles that had fallen on the floor. I used every wipe I had which was good cause I needed the baggie they were in to go over my pouch and keep that ick off of me. then I taped the Ziploc to my stomach holding it all in. I took the paper towel that was there and doubled it up over my under ware so the ick from there would not be against my skin or further leak onto my pants. SO, fifteen minutes later, the restroom is clean and no one is the wiser................. unless they look in the garbage can. There was not enough paper towel to cover stuff up. Oh, well. At least I cleaned up and got it that far. I managed to slink out and get to my car without anyone looking at me. wheewww. After that I decided I could not make any more stops as I needed to get to my moms asap. This bandaid was only going to hold so long. Called ahead and told my mom I was coming in "dirty". She was ready. (-;

Finally!

2011-06-21T07:08:00.000-07:00

It has been two weeks since my surgery. It went really well. A robot called the DiVinci operated on me and the doctors said that everything could not have went better. Now that's what you want to hear when you get out of a major surgery! They "flipped" me over on the operating table which could have been no small task (they said it took 30 minutes) and pulled the rectum out my rear. I have two sets of stitches. One on the outside and one from the inside closing the rectum permanently. With the surgery being laperscopic, I have small incisions in my belly, most going in the same holes as the last surgery. They glued those shut so as to leave minimal scaring. I got out of the hospital in record time (3 days) and have since been home healing. I did come home with a drain tube. I can't describe how weird it is to see a tube protruding out of your belly. Yesterday, I got that tube out. YEAH!! The other best thing that has happened is that I actually "feel" good. I haven't felt good in over a year. It is hard to describe if you have never been through anything like this but I truly was forgetting what it was like to feel good. Now don't get me wrong, my butt still hurts pretty stinking good but I feel good anyway. I waited for this day after my surgery in January but it never came. Now, it is here and it feels great! I have even sewed (for limited short periods due to my butt hurting) which I have been unable to do all year. The disease is totally out of me now and my rectum was tested cancer free. The bag is permanent but I don't even care. It feels good to FEEL good!! Don't know how often I will write in the blog after this but I will do a periodic update. Thanks to all who listened, prayed, commented and cared about me!!

Tomorrow

2011-06-06T07:58:00.000-07:00

Well, it is finally here. Tomorrow is the day. I didn't think 7 weeks would go by so fast but it sure did. My doctor called last night to check on me and see if I had any questions. I did actually. Found out there will be stitches inside and outside my rectum to make sure everything stays in place. She will go in laperoscopy and unless there are complications, she won't need to cut me way open. I am not doing the epidural like last time. It did not work well for me. Felt good that she called. I am encouraged and excited and just want the next week to be over with so I can be home resting. Being at the hospital sucks. Well, I won't be writing for a while but maybe next week.

One more week

2011-05-31T06:44:00.000-07:00

I can't believe it has come so fast, but I only have one more week until my surgery. Things have been o.k. Not great but not horrible. I think the hard part for me is the no energy and overall feeling of not being well. I am stiff and ache quite a bit but not unbearable as to want to get back on the prednisone. I will push through this.

The Phoebe Experience

2011-05-27T06:05:00.000-07:00

Yesterday morning I awoke to a periodic beep coming from upstairs. You know the one when your fire alarm battery gets low and it lets you know you need to change it. Well, I didn't have time to deal with it so I left for work with it still periodically going off. My brother Matt who was kind enough to come over and mow my lawn for me said it was the carbon monoxide detector as he had put his ear to it and definitely heard it beep. When I got home from work I had completely forgotten about it and as there was no beep, there was no reminder. At 3:00am this morning, I awoke once again to the periodic beeping from upstairs. I decided now was the time to take care of it. I waited by the carbon monoxide detector till I definitely heard the beep coming from there. I found a spot where you change the battery and replaced it with a new one. YEAH. fixed it.... or so I thought. Yet again there was beeping. UUGG I took the new battery out and waited. beep................beep. OMG, this isn't going to stop. Remember on Friends where Phoebe woke in the middle of the night with the fire alarm beeping and she tried everything to get it to stop and it wouldn't. She finally ends up smashing it to bits and throwing it down the trash shute. Well, there was me trying to get this thing to stop and it wouldn't. I finally threw the whole thing in the garbage with disgust. THEN I still heard a beep but it wasn't coming from the garbage, it was coming from the fire alarm in the living room. For crying out Loud! So I get out the step ladder and try to put a new battery in the fire alarm. I could not get the battery to stay in and it continued to beep. I finally tore the fire alarm right out of the ceiling and ripped it apart on the counter. Now I am really pulling a Phoebe. I start to laugh as what else can I do. I get the battery in and low and behold the stupid thing is still beeping. UUUGGG So now I am delusional and think that maybe it was the fire alarm this whole time and not the carbon monoxide detector, I pull that back out of the garbage and try the new battery again. NOPE, I was wrong, it is both. How can that be, I mean literally, what are the odds. Anyway, that was my 3am goings on. As for as the colitis, I am doing o.k. I did my preop Monday and I have officially been off the predinsone one month today. I have definitely noticed I eat less so that is a good thing. Can't wait till after the surgery. It is only a week and a half away.......

Cold

2011-05-09T10:29:00.000-07:00

Four weeks to go. I can't believe how fast it is going. Unfortunately staying healthy the next four weeks is going to be tricky. Last week I came down the the mother of all colds. I could not even speak my throat hurt so bad. Swallowing was very painful and I worried about ending up in the ER dehydrated. I warmed up water and just kept sipping on it. By Friday, I had to go to the dr. I had missed 3 days of work and I was not doing o.k. Had to get on an antibiotic. Been off the prednisone for a week and a half now and the aches are definitely getting less. YEAH! That is so encouraging for me. The unfortunate part is I have NO immune system to speak of. Take the good with the bad eh. Well, my goal is to try not to get sick again before my surgery. Been washing my hands plenty and trying to rest whenever possible. I just had a 30 minute long coughing fit. I swear something moved inside that shouldn't have. "sigh" 4 more weeks, 4 more weeks............

Improvement

2011-05-02T10:17:00.000-07:00

I am currently on day 5 with NO prednisone. yeah!! The body aches are slowly getting less and less and I am getting a little more energy. This slight improvement gives me so much hope that I might actually feel good someday. It has been so long now that I am not sure I remember what it even feels like. Even though what I am going through is hard, I feel blessed as my close friends and family continue to rally round me and support me. Even though there is nothing they can do to make things "physically" better. Just a "hey, I'm sorry this is happening to you, I'm here if you need me" helps alot. They check on me regularly and listen when I need a listening ear or a shoulder to cry on. They make it a point to come visit me at my house as I don't get out much. I am absolutely devastated that this is happening to me and I can't stress how thankful I am for my friends and family. They keep me out of the "hole". There are still days, I am hanging on by a string but the encouragement I get from friends and family help me to keep hanging on. I WILL get through this and someday things WILL be O.K. again.

Decision

2011-04-18T10:24:00.000-07:00

I have known for weeks that things were not good. My rectum has been bleeding alot and I have had to resort to shooting steriods up my butt nightly to try to keep it under control. What it means is my rectum is completely infected with disease. I met with my doctor today to discuss my options. She said she could "try" to make a Jpouch and hook things up but could not guarantee it would work at all. If it did work the risks and complications for me would be high. I would most likely always be dealing with complications especially as the very bottom part of the rectum which would need to stay to attach the Jpouch. We currently can't get rid of the disease so it will continue to cause me problems unless it is taken completely out which means they will then sew up my backside and it will no longer be an issue. I knew going in that the bag could be permanent. It appears, it is. I cried alot last week but this weekend met up with some people from my support group who talked me through it. They have not only gone through it but live perfectly normal lives. I have thought alot about this and after meeting with my doctor today I have made the decision to have my rectum completely removed which will make the bag permanent. My surgery date is June 7th. I am at peace with my decision.

Hormones

2011-04-13T10:38:00.000-07:00

Again, this past week has been full of ups and downs. As I wean off the prednisone, I can feel my hormones are getting off. I am normally able to let things that bug me go but I can feel that it is harder now. I get emotional about it instead. There is nothing we can do about that for now as I need to finish weaning off and let a little time go by so we can figure out where I actually AM before making any hormonal changes if needed. I could level out once it is all said and done. SO. Here are the latest ups and downs. UP: My skin infection is completely cleared up. YEAH!!!! DOWN: I am losing all blood out of my rectum. I see the doctor. on Monday to discuss my options. For now I am doing enemas to try to reduce the inflammation. UP: I faced my fear this morning and showered without a bag. I lived. (-; DOWN: I have been a little more achy lately which is making it hard to do things. UP: I tried a new bag and I like it, I think it is going to work out just fine. Notice I started and finished with UP's. I need to be positive this week as the two downs could potentially bring me really down next week. They are NOT a sign of good things to come. I have a feeling, I will need all the positive energy I can get. This weekend I will go to a support group. It helps to talk with people who have been through what you have been and know and understand what you are talking about.

Skin Infection Complication

2011-04-01T10:03:00.000-07:00

I pride myself on being fairly intelligent but when I forgot to take the plastic part off my convex ring before putting it on Wednesday night, it wasn't one of the smarter things I have done. With an already bad skin infection on the outer ring of where I attach my bag, this now made it incredibly worse. It trapped moisture to my skin. I left work a little early cause I felt something might be going wrong. When I took off the bag, I was shocked to see that everything right to my stoma was extremely red and I had sores all over. It hurt really bad and even my stoma looked swollen. I panicked as I knew I needed to get to urgent care but didn't now how. I couldn't put a bag back on with everything all sore like that. As I stood there crying, I managed to call a friend who immediately called another friend to come get me and take me in. Then another close friend came and tried to calm me down and we came up with a plan to get to the doctor without having an accident in someones car. Unfortunately it was a busy night for urgent care and I waited over an hour to get in. Then when I did see the doctor, he said he didn't know what to do. I started to cry again. It hurt bad and this poor doctor didn't know how to help with the bag. He told me to call the wound nurse as soon as I could today. He did give me a prescription for yeast infection to try to heal it as much as possible from the inside out. In the meantime I am winging it with the bag partially on. I called the wound nurse this morning and she asked if I could come in right away as this sounded bad and could turn real serious real quick. I went right in and she told me what I needed to do. I have to get a special antifungle (foot powder) from any pharmacy and to avoid this in the future and still take showers with the bag on I can use Ostomy tape which is water proof and there is also a different bag I can order that would help. Hmmmm learn something new every day. I felt alot better when I left knowing I am doing what I can to get better and how to avoid this in the future. I ordered the Ostomy tape and the skin prep pads she told me to and will pick up the antifungle powder tonight. Wala. Everything is O.K. Well almost. I woke up with a really sore ear this morning. I am afraid I have developed an ear infection. I see my regular doctor this afternoon for that. It's always something. (-;

Skin Infection

2011-03-31T09:53:00.000-07:00

I knew something wasn't right yesterday as I itched alot all day around my bag area. By the time I got home and took my bag off, my skin around the outer ring of where I attach my bag was really red and irritated looking. It hurt pretty bad and I thought maybe I was developing a sensitivity to the adhesive. I ended up calling the on call doctor to see what I should put on it. I knew I couldn't put a bag back on that area so I wasn't sure exactly what to do. It turns out it is from me showering and not being able to get that area dry as the bag traps the moisture under the adhesive area. SO, I will now have to do what I was too scared to do before and that is shower without the bag on, then dry off, then put bag on. I was trying to cover up the bag when I shower but you are not able to cover up that area enough to keep all the water out. Hence the skin infection I now have. For now I put the special powder on the infected area and let it air out and did not take the tape off that part when I put on the new bag. I keep my belt on and let that area air out per the doctor as much as I can. I didn't want to risk a leakage at work so for today I taped down the outer edge of my bag with tape so the adhesive is still not on my skin but can help if there is a leak. When I get home, I will take the tape part back off and let that area air out again. If the area isn't better by tomorrow, I have to go in to see the doctor to get some cream to put on it. I am learning new things everyday. This is pretty minor compared to other complications I could be having so I am at peace with it.

Questions & Answers

2011-03-30T07:39:00.000-07:00

I haven't written in a while because I have been on an emotional rollercoaster and couldn't get my thoughts together enough to put it all into words. Now I think I have what I want to say so here goes: I know that unless you have actually gone through it, you will not exactly understand but I will describe what has been happening the best I can so you can maybe get an inkling of what has been going on with me. For the most part, until a week or so ago, I still felt like complete crap alot of the time. Although the actual healing is coming along, it is alot slower than I anticipated. The energy level is slowly getting better as well. I can wake up in the morning and know I can make it through the day. I have however been suffering with alot of aches and pains which is hard to deal with. It is like when you have the flu and your whole body aches. That is also slowly getting better. Now sometimes it is just my arms that ache or just my lower body and sometimes I get some relief and it isn't too bad. That change has just been this past week where that has gotten better. I have also been dealing with alot of frustration over the fact that I think I should be further along than actually I am, but what I really need to do is accept where I actually am and move on from there. This leads us to the question and answer part. Question: How do you exercise when you feel like complete crap and your body aches? Answer: You don't. Question: How do you lose weight when you can't exercise? Answer: You don't. Question: How do you eat better when you feel like complete crap and your body aches? Answer: You don't. You eat for comfort, anything to make you feel a little bit better. Questions from friends and family that are well meaning but NOT helpful? "are you supposed to be eating that?", "aren't you supposed to be on a diet?", "shouldn't you be walking a couple miles a day?", "how much weight have you lost?", "when are you going to exercise?", "Are you depressed?, maybe you should go see your doctor." Things to say that WOULD be helpful: "want to split a banana with me?", "if you feel up to it later, do you want to go on a short walk?", "do you want to go out and do something, maybe see a movie?" Think of it this way, you know how hard it is to diet when you feel o.k. I have been there many times so I KNOW that feeling. Now, try and diet when you don't feel well for a long period of time. It is ALOT harder than you might think. I am getting there, slowly. I need encouragement and support, no judging or pushing. Nobody can push me harder than myself. Thank you to all for reading this. I hope I have not offended anyone, that was not my intent. I just wanted to try to express how I have been feeling. No one knows more than me what losing weight or not losing weight will mean for me. I am doing the best I can under the circumstances.

Weight Management- day one

2011-03-14T09:49:00.000-07:00

I went to my weight management meeting at the UofM last week. It was a good meeting. We figured out that I need to lose about 70 pounds before my next surgery. That does not give me alot of time since we wanted to schedule that for July but I will give it my best. I am going to start the cellular healing diet by Dr. Pompa today. http://www.drpompa.com/ I figure alot of my problem is I am swollen and my joints are killing me. I know the steroids are not helping me with this but I also know sugar is horrible and causes inflammation. This can not be helping me either. Now that I am down to 2.5mg/5mg of prednisone, I think I can stay on a diet better. It is basically, meat (organic if you can) and veggies. I can have eggs and salads (if I can tolerate them) just not sugar or anything that turns to sugar fast like breads, pasta, etc. I have a friend that has been doing this diet for months and doing really well. It is close to the diet I did last summer just not quite as strict and I still have my recipe books from then so I have lots of recipes. The weight management lady agreed that this was a reasonable diet to do.

It is super hard to diet when on steroids but like I said, I am running out of time to lose the weight. My other obstacle is I am so far out of shape and my body hurts so bad that it makes it hard to want to move at all. My feet hurt so incredibly bad from the plantar fasciitis that I hobble everywhere and walking is really not an option right now. The weight management lady said I could go see a physical therapist and they would evaluate all my limitations and come up with a plan for me to be able to exercise without being is so much pain. Until I have that apt. I am just going to do light house cleaning every night around the house. That is the plan for now.

Post OP Dr. Apt.

2011-03-03T10:40:00.000-08:00

I met with Dr. Genevieve today. Technically that is her first name, the last name is well complicated and I can't remember it. Anyway, I am meeting with her and not my regular Dr. which is Dr. Rothenburger cause he fell and dislocated his elbow. Let's just say that is NOT a good thing. He is currently recovering so in the meattime I have Dr. Genevieve. I liked her alot and she did say she has been doing surgeries with Dr. Rothenburger a long time so in case he was not well enough before my second surgery, she would be more than compitent. From my meeting with her, I would have no problem with that what-so-ever. Her and everyone I have come in contact with at the UofM have been extremely kind and helpful. I have no complaints with my care at the clinic at all!
Dr. Genevieve said I was doing well although I had been coughing alot and my lower stomach hurts quite alot. She decided to keep my on my restrictions a bit longer. That means I can still not vacuum and clean my house the way I would like. I do have family and dear friends that have been helping me with things but it is hard for me as I like to clean my own house and I HATE imposing on others. But, yet again, I will swallow my pride and do as I am told.
My weight is still an issue so they are going to try to hook me up with the medical weight management group at the U to try to speed things up a bit. We really need to do my second surgery this summer and I have to start losing more weight. What complicates things is I am still on 5mg of prednisone. We came up with an 8 week plan to finish weaning off. In the mean time, I need to still try to start losing weight and with my feet hurting as bad as they are (plantar faciitis) and my knees also killing me, it is going to be a tough road. Hence the Weight management team.
Besides all that, everything is going well so I just need to keep going and focus on weight loss.

^%#& Happens!

2011-03-03T10:21:00.000-08:00

SO, I am lying in bed and I awake slightly to take the covers off me as I am now hot. When I throw the covers off, something unimaginable happened. Apparently my belt (normally attached to my bag) had come off sometime in the night and when I threw the covers off, they attached to my bag and the top bag part unsnapped and came off. Like whipped across the bed off. Now I realize I am lying there with no bag on and lets just say the %#$ was EVERYWHERE! It was 2:30am as I very carefully got out of bed and take care of the immediate problem. (Replace bag). I can't just put a new bag on existing base as it is full of %$@# so I have to peel that off too and start over. I am so tired I can barely function but I managed to do it in what I am sure is my worst time ever. Then I had to strip the bed and get everything to the laundry. Now I have no energy to remake the bed so it was the couch for me. At least I now know I can replace the bag half asleep if needed.

Blood Scare

2011-02-22T13:20:00.000-08:00

So I know I said I had my colon removed but technically I still have my rectum part. Even though it is not "hooked up" to anything anymore, it is still a live organ and it still "functions". About once a day, I would get a feeling like I needed to go #2 and will go to the bathroom and have a "bowel" movement. It would just be mucus and according to my doctor, it is very normal. I was perfectly o.k. with it until a few days ago, I thought I noticed a tinge of red when I wiped my backside. I've been keeping an eye on it and today I for sure saw blood in the toilet. Brought me back to the colitis days where I saw blood in the stool. It made me nervous cause all I could think of is I am down to 5mg on the prednisone and now the colitis is acting up in my rectum. Will I lose my rectum now and maybe even my option of getting a pouch? It was wayyyy too much for me to stress about so I called the nurse. She said a small amount of blood is o.k. If it continues, they will look at giving me anti-inflamitories in the form of suppositories. So no worries yet.

I have been exhausted lately and am trying to find a balance between working part time and resting. It is hard as #1, I am sick of "resting" and #2 I think my boss is sick of me leaving work early or not coming in at all. "sigh". I will continue to find my balance.

Flood

2011-02-14T13:15:00.000-08:00

Well, it was an exciting day at the house today. Took a shower and while I was getting ready to go to work the basement started to flood. I quickly threw down towels and got a hold of my dad to ask him what to do. He always knows what to do and this was no exception. He told me to call the city and see if they were having issues and if they weren't to call a sewer guy. Sewer guys are cheaper than plumbers. Good to know. The city came out within 20 minutes and checked the manholes out in the street and said it was not them. 6 hours later, the sewer guys came and snaked the line out to the street. $250.00 later, they were done. "sigh" It is only money right? Turns out I had alot of roots in the line. The guys said it happens and you need to get the lines snaked out once and a while to avoid this situation. My other option is to cut down trees. I will assess the situation this summer and decide what to do. When he took the toilet off, there was one diaper wipe in there. That was not good either. Another lesson I learned. When I came home from the hospital, I just assumed the diaper wipes were flushable. I was wrong. After using them for 2 days and flushing the sewer backed up (flood all over like today). The water went down and I never flushed the wipes again so we decided that was why the sewer backed up and we would be fine. I guess we didn't count on the roots causing a problem too. Anyway, lesson learned. The sewer guy said that even if those kind of wipes say they are flushable, they can still cause problems so note to self. Do not flush anything but toilet paper.
Thanks to my close friends who came right over to help me mop up the flood, my basement is in decent shape. I do believe I will have to tear up the hallway carpet and replace as it has now been flooded on twice and is now a nice black color. ewww

2nd day of Work

2011-02-11T11:15:00.000-08:00

Yesterday I made it five hours which is 2 more hours than I thought I could make it. Today, I will make it for 6 hours. I will try to work all full days next week but will not push it if I need to rest. I am doing o.k. I just get tired fast. Every day gets better though and I think working helps me heal as I am keeping busy and moving around alot.
I am at 10mg of prednisone and the dr. said to stay on that for another week, then go down to 5mg. I can't wait to hit 5mg as I think that will make a big difference for me and should be able to start losing weight faster.
I think I have adjusted well to the bag and I can change it out o.k. and emptying the bag is now old hat so all that going well. Wayyyy better than living with a bad colon!!

Work

2011-02-08T09:18:00.000-08:00

I got approved to start back to work this Thursday part time. Money wise I really need to work full time but I know I am not ready for that. I will probably be part time this next week till I can build up some strength. There are moments where I think I am ready, then other times where I think I am not. Either way, it is a necessity.

I am still doing alot of sleeping which apparently my body needs so not getting alot done. What I mean by that is I would rather be sewing but still not up to it. )-; I can however keep the house picked up which makes me feel good and I have some good friends who do the floors for me and empty garbage and do the dreaded cat litter. It will be a while yet before I can do those.

Even though I feel loads better since the surgery, I am still waiting for my "oh, my goodness, I feel fantastic day". I heard it comes around week 6 after the surgery. I am only on week 3 so still waiting...........

More progress

2011-02-03T12:46:00.000-08:00

Got my staples out a couple days ago. It wasn't bad at all. I know people told me it wouldn't hurt much but hard to believe as they are big metal things sticking out of your body. Can't imagine it would not hurt more. A couple pinched pretty good but for the most part they didn't hurt much at all. The incisions are red and sore and I swear if I let myself, I would itch them bloody. But I am NOT letting myself. I want to continue to heal well.

My stoma is looking better as I think I have the best bags for me now. It is a two piece bag with a convex skin barrier. I also have to continue to use the belt as it helps keep the skin barrier in place.

I am down 12 pounds so far which is good cause I am not trying extremely hard right now as I am still trying to find a balance with eating in general and making sure I eat enough to start gaining more energy. I still poop out pretty fast but it is getting better.

Progress

2011-01-31T14:54:00.000-08:00

It is getting to be old hat to go to the bathroom with my bag now. At first it was kind of a pain but now I got it down to a science and it isn't so bad. Been experimenting with different bags until I got one that works the best for me. My stoma is small and starting to be inset a little so I need the convex barriers and the belt to help the bag fit correctly. I put my first bag on all by myself this week and the nurse looked at it today and said I did a great job. Guess I am getting that process down too.

Can't wait to get my staples out tomorrow. They hurt SOO bad. I am sure getting them out will not be pleasant but at this point, I don't care. I want them out. I will have more mobility then too.

Every day gets better. I can't wait till I can exercise more and go down on the prednisone more. Right now I am at 15mg and in a few days, I will be at 10mg. Right now I am concentrating on feeling better and gaining some strength back.

Learning curve

2011-01-27T05:17:00.000-08:00

It has been 9 days since my surgery. I have learned ALOT. For one, if there is an emergency and all of a sudden there is a "leak" in my bag, I CAN not only move fast to the bathroom but can change my bag out in record time. Now keep in mind, I had a best friend to help me this time but the fact that we both stayed calm and just dealt with the situation gave me encouragement so that I feel like I can do it even when I am alone.

We went to see my regular doctor yesterday and everything looks fine. I had her xray my right ankle as I hurt it a month or so ago and it is still giving me trouble. The xray showed nothing so I will have to deal.

Every day the pain is in a little different place which is nice actually. Gives the previous place a rest. If you have experienced alot of pain like me, you will totally understand. Things are better every day too. I can move a little better and breathe a little better. I have staples and they hurt alot but I will get those out next Tuesday. Then I think, I will be on the fast track.

Post Surgery

2011-01-23T12:23:00.000-08:00

Where do I start. I checked in at 5:30am for surgery on Wednesday, January 19th. The surgery went very well except for after when it took them 24 hours to get the pain under control. That part was extremely hard! Once they finally got it under control, I excelled in everything they asked me to do. Get in and out of bed, walk, breathing exercises etc. I can almost go to the bathroom by myself. I just need to find a couple "tools" to help me. We are experimenting this week to see what will work. I went home this morning with family/friends in tow to help until I can survive by myself again. The colostomy bag is no big deal, I can empty it by myself now and tomorrow, I will practice changing it again. It feels good to be home and I know I will heal alot faster here than at the hospital. I have a great support system and I am very thankful for that. With them, things will be O.K. For now I just need to finish healing from surgery and start losing weight. I am ON it.

Nerves

2011-01-18T10:43:00.000-08:00

I already knew today was going to be hard but little did I know HOW hard. Woke up at 2am and the nerves started in. I was fine till then, but now it was hitting me hard and sleep was no longer an option. When I got to work, I was already exhausted and not coping well. Then the phone rang. It was the hospital nurse wanting to know where my physical papers were. I thought when I had my last appointment with Dr. Rothenberger that this was the pre op. I was WRONG. I had to quickly call my clinic and get in for one. By this time, I could not stop the tears from flowing and I was a complete mess. I had to go to Urgent Care Saturday as I woke up last Thursday with a cold and it was getting worse. I got on an antibiotic and things were much better but now I wasn't sure I could pass the physical. Like I need more stress today. "sigh" I let my boss know that I got an appointment for a physical this morning but would not be back. I am already too much of a mess and under too much stress. The dr. said I was fine for the surgery and put a rush on my blood work. He said he would call if there was a problem but it should be fine. So far no call so I think I am in the clear. "whew" That was certainly a close one. Surgery is scheduled at the crack of dawn tomorrow which is good cause I am already starving. Oh, wait, I have liquid chalk (to clean out colon) I can drink tonight. Yippi!!

One week and Counting.......

2011-01-12T12:36:00.000-08:00

By next Wednesday at this time, I will be done with my surgery and hopefully on ALOT of pain meds. (-; I just want this to be done so I can start getting better which means losing weight. My goal is to lose 100 pounds in 2011. It is a hefty goal but realistic. I need to be able to look in the mirror and recognize who I am.

My MRI results came back normal so I do not have a tumor. It is most likely what we suspected: Side effects of the prednisone. In a couple months after I wean off the prednisone, I will need to do another test to see if things go back to normal hormone wise. If I get my period back, I will be one hopping mad chic as it is the ONLY good thing physically that has happened to me this past few years.

New Year

2011-01-04T07:10:00.000-08:00

It is going to be a long year but hopefully a really beneficial one. My surgery is in two weeks and believe it or not I am excited. I just want to feel good again. I have done a ton of research and talked to alot of people all of which have no regrets having their colons removed and they are now feeling good. They understand me when I say I don't feel good..EVER. A good day at this point is being able to have enough energy to clean my own house. I can't wait to do all the things I have been wanting to do and not sitting at home cause I "don't feel good" or need to stay by the bathroom.

Tomorrow is my MRI for the hypothalamus issue. I am not sure when I will get those results but I am guessing next week. Of course I have to have dye shot in me for this and you know what that means. Yes, the dreaded IV. UUGG I need more good veins. I really hope there is a good nurse on hand to do this or it will be a problem.

Hypothalamus Trouble

2010-12-27T13:52:00.001-08:00

If you are anything like me, you do not know what a Hypothalamus is. Let me enlighten you. The hypothalamus is an integral part of the substance of the brain. A small cone-shaped structure, it projects downward, ending in the pituitary (infundibular) stalk, a tubular connection to the pituitary gland. It regulates homeostasis. It has regulatory areas for thirst, hunger, body temperature, water balance, and blood pressure, and links the nervous system to the endocrine system. It also controls your hormones. I haven't had my period in 2.5 years which of course I am thrilled about. It is the only good thing that technically has happened to me. I was assuming since my mother went through menopause early, so did I. Well, my OBGYN wanted to check and make sure and of course my test results show there is trouble. UUGGGGGGGG We are hoping it is just because of the predisone but because I won't be able to wean off till after the surgery and that would take too long we need to get it checked out now. Rule out a tumor that is. SO, next week, I will be getting an MRI. Just add that to my recent test list......... "sigh" This is exactly what the doctors have been saying, if I don't get off the steroids soon, they will cause a host of other problems. 3 more weeks and counting to my surgery. (January 19th)

Sleep test results

2010-12-13T16:10:00.000-08:00

I got my sleep test results today. Apparently I stop breathing 100 times an hour and I am not breathing for an average of 24 seconds per time. If I am calculating this right, that means I am NOT breathing for 40 minutes out of every hour. It's no wonder I am so tired! 30 times per hour is severe which means I more than qualify. I am not his worse case though, he has seen 165. Somehow that made me feel better. (-;

I got to take home my new cpap today and will start using it tonight.

Heres to better sleep!

Surgery Date

2010-12-10T06:01:00.000-08:00

My surgery date is set for Wednesday, January 19th. I will be in the hospital approximately 1 to 1-1/2 weeks. I was sick yesterday. As of now, the surgery could not come fast enough. "sigh". I just want to start feeling better and I want it NOW. Is that too much to ask?? Anyway, I am waiting it out not-so-patiently.

Sleep Test

2010-12-07T05:40:00.000-08:00

The sleep test was interesting. I checked in about 7:20pm and was shown my room. It is just like a hotel room with a bed and TV and your own bathroom. I got my pajamas on and the technician hooked me up to about 25-30 wires. All over my face, head and a couple down my legs. After I got all "hooked" up, I watched TV for a while, then decided to go to sleep at 9pm as I was, as usual, exhausted. Of course the one time you want to go to sleep fast, you can't. I tossed and turned for a half hour, then got up and read for a while. At some point, I fell asleep. I woke up and turned the light off. Around midnight, the technician woke me up and said I stop breathing regularly so they were going to put the cpap on me for the rest of the night. It feels weird at first but it didn't take me too long to go back to sleep. The next thing I knew it was 6am and they were getting me up. The technician took all the wires off and the test results will be at my doctors office Monday. I am sure they will be giving me my own cpap as I had to have it on even for the test. All in all, not a bad experience. I will be happy when I am getting more sleep and feeling better!

Sleep

2010-12-06T10:43:00.000-08:00

On top of all my other "issues", I have started not to sleep well. I am so exhausted that I am scared I am going to fall asleep driving. I noticed as my weight has increased that my sleep has decreased. My sleep is extremely restless now and I wake up almost as tired as what I was when I went to bed. My family and friends have mentioned that I stop breathing now while sleeping so I decided to get into the clinic to get checked. Today the nurse at the Lung Clinic told me that my back throat area is completely closed which is a sign of sleep apnea. Because I am due to have surgery next month, we want to get right on top of this so I got in to the sleep clinic tonight. I have no idea how it is going to be to sleep in a strange environment with wires all hooked up to me and someone watching but I guess I will find out tonight. Hope I don't do anything really embarrassing in my sleep........ Back in the day, I have been known to sleepwalk.

Confirmation

2010-11-24T04:57:00.000-08:00

I had an appointment with the GI doctor yesterday. He said that removing the colon was the option he thought should come next confirming what the Surgeon had recommended. I have been not feeling best lately even though my stools have been firm and not bloody, I still feel icky. It will be totally worth it to have my colon removed if I can feel good again and not have to worry about where the closest bathroom is. This next 7 weeks is going to be hard as is the next year. I will take it one day at a time........

The Surgeon

2010-11-19T05:49:00.000-08:00

I met with Dr. Rothenberger yesterday. He gave me another partial colonoscopy and talked to me in great length about my current condition. He agreed that I can't keep going on as I have been as my quality of life has diminished greatly this past year. He recommended removing the colon completely. Even though I have known that things were headed this way, it was hard to hear it from the doctor. Reality set in and emotions ran high. I went out to dinner with some close friends and then home to cry. I read two books that the doctor gave me. One on the set of 3 surgeries this would take and one on caring for the exterior bag I would have temporarily and maybe even permanent depending on how the surgeries go. We are looking at doing the first surgery in the middle of January. Things are still sinking in. I will get better as time goes by. I feel at least that I might have the hope of feeling good again and living a halfway normal life. I have an appointment with my GI Dr. next week. We will see what he says and make appropriate appointments from there.

Waiting.....

2010-10-26T14:31:00.000-07:00

I have an appointment with a surgeon on the 18th of November to discuss the possible removal of my colon. My GI doctor appointment is the following week. Then we will make decisions on what to do next. Until then, I am just waiting for the appointments to come due. Right now my colitis is just o.k. Not great, but not extremely bad. I go to the bathroom a lot and I do have some blood in my stool but am feeling o.k. for the most part. I hate the waiting but getting in to see these people is not a quick process. I will update the blog in a few weeks when I have made some decisions as to what I am doing next.

10/13 Doctor visit

2010-10-13T15:32:00.000-07:00

Saw my GI doctor today. He asked my permission to discuss my case with a group of GI doctors tomorrow. He wants to get the group consensus on what we should do next. There is a couple more hard core things we can try but who knows if my body will take it. There is also the removal of my colon to consider. My quality of life has not been great this past couple years due to the colitis and I am tired of the struggle. He agreed that it was time to meet up with a surgeon and see what he has to say about it. I have an appointment to meet a surgeon in 3 weeks. We will see what all the doctors say. For now, no new meds. I need a break.

1%

2010-10-06T13:24:00.000-07:00

I know I haven't been writing in my blog too often lately. Honestly, I just haven't been feeling that well. My colitis has been bad and we had to up my dose to 40mg. So far it is not getting much better. I had a sneaking feeling the Azathioprine was making things worse instead of better. I was right. By Sunday I was so sick, I could not drive myself home from a trip up north. After being driven home, I had to go to ER as the pain from my colitis had gotten out of control. After a few hours and tests, I went home and was starting to feel better. By lunch time Monday, I was doing fairly well so I took the Azathioprine as directed but by that evening I was sick again. So sick, I started to vomit fairly regularly. Now I have it coming out of both ends. UUGGG After hours of vomiting with no let up in sight, I succumb to calling a dear friend to come pick me up once again to take me to the ER. "Just make it stop" I said, screw the pain, make the vomiting go away!! So they give me this anti-nausea drug and guess what? 10 minutes later as I am in the x-ray room laying on a table, I start to get anxious. Like holy crap, get me off this table, I need to run now anxious. I could have scratched the paint off the walls at that point and was about 3 seconds away from ripping out my IV. The girl finally called 911 on radio and got someone to inject me with something else to make it better. I have a new found sympathy for people who have severe anxieties. It is a horrible feeling!! The nurse tells me only 1% of people have a reaction to that medication. I am the 1%. Well, lets not start me on the 1% theory as I am queen of the 1%. I got pancreatitis from the Asacol which only happens to 1%, I got severe flu symptoms from the Azathioprine which only happens to 1%. Back in the early 90's I decided to do the Depo shot for birth control and couldn't wear my contacts for 3 months due to the 1% chance of bad chemical reaction. The list goes on, but lets not digress. So lets do a positive 1%. How about I be the 1% that makes it through all this dispite the odds of all my negative 1%s.

Results

2010-09-24T17:58:00.000-07:00

So lots have happened this week. Where do I begin... Monday, I had my sigmoidoscopy (partial colonoscopy). It went as well as one can go I would imagine with someone shoving a camera up your butt. The dr. took samples of my colon for testing and the really nice nurse killed the last good vein I had in my right hand. And that was my good blood hand. )-; I will worry about that one later. Anyway, I had brought a stool sample in as well. Now, if you have never had to bring your own stool in, that is an experience in itself. You get this little "kit" to take home and you read all the instructions which is an entire page so you do it correctly, then you "gather" the sample. Then you store it in your refrigerator till you can bring it in. Fun fun I tell you. Anyway, all my results came back and my doctor called me himself. I am always impressed when a doctor takes the time to call you themselves as that shows me they really care. I happened to be home yesterday when he called as I was too sick to go to work. I had started on a bad colitis cycle this week and was too swollen and sick to go in. He asked me if I wanted to start on the new medicine as all my results came back negative so that I could take it. I started on it tonight. It is called Azathioprine and is used for various ailments besides ulcerative colitis including rheumatoid arthritis and for kidney transplants to help as an anti-rejection drug. Now as in any drug, it has it's own side affects including swelling of the liver and the pancreas which of course is my biggest fear. If I have either of those two I have to stop taking it immediately. DUH! It is an immune suppressant drug so I have to go in and get my flu shot along with an pneumonia shot and a couple others. There is a host of other side affects including cancer but it is a trade off. It could miraculously make me alot better or make me alot sicker. It is the chance you take with medicine. This also takes months to kick in so the doctor had to up my prednisone as I was so sick. So much for getting off it which by the way was the whole point of starting a new medicine. Starting now, I have to go in every 2 weeks to get my blood tested to make sure things are o.k. with my liver and my white blood count. The doctor wants to keep close tabs on me. For now I am excited and nervous but have nothing to lose. I have to keep trying things till I find one that works. In the end, I might still lose my colon but it won't be for lack of trying!

New Doctor

2010-09-14T15:16:00.000-07:00

Saw a new GI doctor today. I liked him alot even though he had some tough things to say to me. He reminded me of my family doctor in that I could tell he really cared and made me feel like he would help me through this. Anyway, I am not out of options yet. He has a few things I could try depending on some blood test results and another telescope to see how my colon currently is. The long term use of the prednisone is taking it's toll and I will need a specialist to help me wean off of that but not until I start on a new medicine and we figure out if it will work. This will be a couple months down the road. I also need a bone density test as I have lost a half inch of height this past couple years. Another side affect of the lovely prednisone. I can't remember the name of the new medicine he wants me to try but assures me it is not in the same family as the Asacol that caused the pancreatitis. They will have to monitor me closely as this medicine is more severe than the prenisone and will kill my immune system. I will be even more susceptible to viruses and diseases and he reminded me that at this point the threat for cancer is high for me with or without the new treatment. I have had a bloody colon way to long. So for now, I will do what he asks and go from here. In the end, I felt the meeting was positive and I have options.

pain

2010-09-08T08:56:00.000-07:00

I have been off the diet for over a month now. Colon wise, I have done really well. The more I eat, it seems to pass through me better and the stools are more formed and normal except for the small amount of blood in it. Next week I have a doctor appointment with a new GI doctor. I am hoping against hope he has something new or different I could try.

I have been in alot of pain this past couple weeks, all summer really but more lately. My knees hurt bad, my feet hurt real bad and I have chronic pelvic pain that has been really bad as well. OH, and then there is my back pain. UUGGG Getting comfortable has been really difficult. I have never been late to work or left early due to pain as much as this summer. So far my boss has been real understanding but who knows how long that will last. My weight is an issue but being in the prednisone is a tough one.

At this point, all I can do is one day at a time. I am struggling from day to day but keeping my chin up. I feel like I am running out of options.....

Ho Hum

2010-08-24T10:53:00.000-07:00

Well, there is less blood in my stool and I had a pretty good weekend. I felt decent and got lots done around the house. Today, I am not feeling the greatest but keeping on none the less. Sometimes I get so tired of the whole struggle. Obviously it is not going away so I just take it one day at a time. Sometimes it is a good day, sometimes a real bad one and sometimes an inbetween day. Today qualifies for inbetween I guess. Not great but not horrible either. Just need 4 more hours to go by so I can lay down at home. That always makes me feel better. That and chocolate. (-;

Positive Attitude

2010-08-16T12:43:00.000-07:00

Things are better. I have less blood in my stools and the pain in my colon is much better. I think a positive attitude makes the biggest difference. Although, you can't possibly stay on the SCD Diet and be at 50-60mg of prednisone, I am doing the best I can not to eat constantly. Last time I weaned off it really quickly so the cravings weren't so bad. This time I have to follow Doctors instructions and it will take 3 weeks to get back down. In the mean time, I will do my best to eat responsibly.

ER Visit

2010-08-11T09:51:00.000-07:00

I try to avoid the Emergency Room at all costs but got pretty sick Monday and by wee hours of the morning on Tuesday decided I needed to go in. I was extremely swollen and the pain was pretty bad. By then I wasn't sure if maybe something else was wrong and I needed to know. The doctor made the conclusion that it was just my colitis acting up and put my prednisone up to 60mg. Although that stinks, I am feeling much better today. This also means that I need to make an appointment with a GI doctor to discuss what options I have left which unfortunately mean discussing the complete removal of my colon. It saddens me to think about it but it seems to be an option I need to look at. Until then, I will be slowly weaning off the prednisone and hanging in there the best I can.

Emotional

2010-08-09T08:52:00.000-07:00

I am very emotional today but not as much as yesterday. Yesterday, I had my own little pity party. "sigh" What happened was, Friday on top of not feeling well, I starting spotting. So now I am bleeding from the front AND the back. I haven't had a period in 2 1/2 years and NOW it decides to come back. It threw me over the edge and even though it stopped by Sunday, it was too late to regain my normal positive attitude. I cried on and off most the day and curled up in a ball on the couch. I keep finding myself back to square one and it is most frustrating. I did manage to start fully back on the strict diet yesterday and of course feel like crap today. I had to come to work late cause I couldn't leave the bathroom this morning. I have to wait till I think I can make it to work without having an "accident". Apparently I will go through the feeling like crap for the first two weeks again and that is NOT making me feel any better. I know I need to get over this and just do it. I need some days to go by......... One day at a time.

Floundering

2010-08-04T05:48:00.000-07:00

If anyone else has been on this diet, they would understand how hard it is to stay on it. This past week I have been half on, half off. To take the positive side, I learned a few things. #1- I can still not lose weight on 500-600 calories a day. When I started the diet over, my calories got real low and I STILL did not lose weight. #2- when I don't eat enough, there is blood when I go to the bathroom, when I ate more, there was no blood. #3- when I wasn't eating enough, my muscles ached, when I ate more the aches went away. #4- when I didn't eat much, I didn't feel real good, when I ate more I felt much better. In conclusion this means I need to find a way to eat enough so my muscles don't ache and have enough fiber so my food "moves" through my body quick so as not to sit and irritate my colon and cause blood to appear and overall I will feel much better. I need to do these things ON the diet.

Patience

2010-07-28T10:43:00.000-07:00

Here's the deal. I want to be well, and I want to be well NOW! Is this TOO much to ask?? UUUGGG So what happened of course is that I added in foods wayyy to fast and now one of them is irritating my colon and I have no idea which one. "sigh". So now I have to take all of them back out and start over. This time, I will only add in ONE at a time and wait several days to see if it is agreeing with me or not. If it is o.k., I will then add the next one in.

This STINKS, but it is what it is. )-:

good news/bad news

2010-07-20T05:31:00.000-07:00

The good news is I am feeling alot better OFF the blood pressure medicine. The bad news is, I had gotten down to 5mg of prednisone but I am experiencing alot more blood in my stools. Will have to up it back to 10mg today. That is a big disappointment for me. "sigh" I think I need to find a way to add more fiber without eating the foods that irritate my colon. Doing research on that this week. I am wondering if the food isn't moving along fast enough and just sitting in my colon and irritating it. If that doesn't work, I am thinking about doing a week of just broth to see if I can get the colon to completely heal. I am struggling today as I don't really feel good. )-: I will however keep my chin up and keep going. There are no other options.

update on blood pressure

2010-07-16T04:51:00.000-07:00

I went to the doctor Wednesday and even after taking half dose for almost a week and not taking it at all on Wednesday, my blood pressure was normal. She took me off them completely. The headaches are gone and I feel much better. I have to go in once a week for a while to make sure it stays normal. If it starts to creep up again, she will put me on a lower dose. Very happy about being off of them!

The diet is going fine. I ate something I shouldn't have last night. I don't know what I was thinking. I thought it was fine up until I went to bed last night, then I realized I shouldn't have ate it. I had some pain in the small intestine and colon area but not doing too bad today. Won't make that mistake again though. You have to really be on top of your game to make sure you are always eating what you should be. I did go down to 5mg of prednisone yesterday. I will do 10mg every other day for a week and see how I do. If all goes well, I will lower to 5mg/day every day.

Blood Pressure

2010-07-13T05:47:00.001-07:00

I am having trouble with my blood pressure pills. They now make me sick. I tried to continue to take them till I could get into the doctor but they are now giving me bad headaches and they make me feel sluggish. SO weird. I started to cut them in half a few days ago and started taking them at night but then I would have a bad headache before bed. I didn't take one last night and felt much better but I think I will take one this morning. I either need to go on a lower dose or a different kind or something. I have been monitoring my blood pressure and it has been slightly high but not bad. I go to the doctor tomorrow.

Grapes: I ate grapes the last 3 days and I noticed I have alot more mucus in my stools and a little more blood. I guess I am not ready for them yet. Will cut them back out and continue on. Otherwise I have been doing well on that end of things. You have to add one food in at a time and see what happens and go from there.

2 1/2 Weeks

2010-07-09T06:21:00.001-07:00

It has been two and a half weeks and I am doing SO much better. I still have some mucus and every once in a while a trace of blood but the improvement is huge. I am down to 10mg of prednisone. Hoping by the end of the month to be able to wean completely off but I will just have to keep monitoring things and lower it as I can. I have more energy this week so I have managed to walk for twenty minutes a couple times. Exercise is good for healing the body too. Will try to incorporate more of that as I am feeling better.

Progressing Well

2010-07-06T11:11:00.000-07:00

Last week I had decided to up my prednisone to 50mg. Bad idea. The symptoms got WAYYYY worse. So the next day, I lowered it to 40mg, then to 30mg and now I am at 20mg. Interestingly enough the lower dose I got on the better I did. I am wondering if because prednisone kills BOTH the good and the bad that when I upped the dose, it killed all the new good bacteria I had accumulated. All I know is I only have a trace of blood left in my stools (not too formed yet) and I am feeling much better. By this weekend I want to go down to 10mg and slowly go down from there. This is so exciting. I am actually getting somewhere. Not only that but as of Sunday I am down 17 pounds already. Not bad for two weeks on the plan. Keep in mind I am doing the Fat Flush Plan first which is 3 weeks, then morphing into the SCD (Scientific Carbohydrate Diet). I am so excited cause this week I can have some fruit. Between the SCD book (Breaking the Vicious Cycle) and the Eat Well, Feel Well book there are plenty of recipes that I can make and so far all of them have been very good. I am learning to cook a different way and tasting new foods. Things are looking UP!

Doing well

2010-07-01T08:23:00.000-07:00

I am doing really well and feeling much better. Finally, I have some energy so I have been slowly getting more active (doing yard work, walking etc.). Even though I am doing well, I have decided to up my prednisone back to 50mg for a week. My stools still have some blood in them and although I am not losing alot of blood, I shouldn't be losing any. I am hoping this rectifies this problem. I also still have some mucus in my stool but not nearly as much as I had before. I realize it has only been a week and a half since I started so considering that I am progressing fabulously well.

Improvement

2010-06-28T05:39:00.001-07:00

I have made definite improvement this past week. I still have blood in my stools but alot less than a week ago. I have to say, I still felt pretty crappy last week due to the flush and most likely due to the withdrawal of sugar. By Saturday I felt as though I had been run over by a Mac truck and my whole body hurt and I had no energy what-so-ever. Got a massage Saturday afternoon and she said when you are flushing (detoxifying), it affects your muscles. I don't remember the exact explanation but it made sense and a massage was the right thing to do to help. I drank alot of water after that and by Sunday I was feeling much better as I still am today.

I went to a going away party yesterday where there was tons of food I would have loved to eat but ate before I went knowing I couldn't have any. Whenever I get a craving, I just say to myself "a piece of cake or my colon, choose". I always choose my colon. It makes the craving go by pretty fast and I had a great time cause I focused on visiting with my friends instead of the food which I would have normally done.

Everyday I am on this diet I feel better and look better. I am down 10 pounds already. Yippi! A nice side effect for a change. I am lowering my prednisone down to 30mg this week. We will see how that goes.

Day Five- Breaking the Vicious Cycle

2010-06-24T06:16:00.000-07:00

I am on day 5 of the Gut Flush Plan (varied due to the colitis) and doing o.k. I am still losing some blood but not all blood like I was last week. Because of the colitis I had to give up grains as well as sugar/gluten/dairy and fruit. This is a three week plan and starting on the third week I can start adding fruit back in. I lowered my prednisone to 50mg this past 5 days and starting today am lowering it to 40mg. At this point I can't tell if it is hindering or helping me. All I know is I don't like it at such a high dose.

The Gut Flush Plan mentions a few reference books, one being Breaking the Vicious Cycle by Elaine Gottschall. I ordered that along with another one recommended (Eat Well, Feel Well by Kendall Conrad). Got both books in the mail yesterday. Breaking the Vicious Cycle is definitely on to something. Basically it is saying that it is sometimes not as simple as someone having an allergy to a certain food or group of foods as to why they have IBS or even autism. It might be because they are no longer digesting complex carbohydrates (grains). I read the first couple chapters already and feel like BING, we are on to something here! That would explain why when I did the no gluten/no dairy diet before, nothing really changed. I have decided that after finishing the Gut Flush Plan I will continue to eliminate grains, sugar and most dairy's per the Vicious Cycle diet plan. The one thing I did learn is that some people after being on this diet for a year or so have been able to go back to eating all foods normally cause they healed their bodies. I looked through the whole Eat Well, Feel Well book which is 90% recipes which co inside with the Breaking the Vicious Cycle book and there is a ton of recipes in there I would like to try. This means I have to be off of sugar and my normal staple of breads for at least a year. Yes, mom, I can do this. I have to. I believe it means living longer with a healthy colon or them taking my colon out completely. I choose my colon!

Rough Weekend/New Plan

2010-06-21T06:26:00.000-07:00

I contenplated going to the hospital this weekend as I had been losing blood all week and not feeling well at all. That would be the only way I would be able to see a GI dr. quickly. Otherwise it takes a couple months to get an appointment. Then I kept thinking, what are they going to do for me? I already upped my prednisone to 60mg and it didn't seem to be helping. Their only options they have been giving me I refuse to do.

I did finish reading the book "The Gut Flush Plan" by Ann Louise Gittleman and it made alot of sense to me. Even though the GI doctors don't think that food management will cure my problem, this book does and so do I. I have nothing to lose but to give this a try. I had the probiotics (different from what I was taking) rush shipped to arrive on Saturday and a dear friend helped me get all the special groceries I would need for the Gut flush diet. The diet is very strict. No sugar, No dairy, No gluten, No fruit. I think I start to add fruit in on the third week then after that slowly add the rest of the things back in. It is supposed to help repair the damage in my colon by cutting off the foods that the bad bacteria feed on and replace with good bacteria. It will be a rough 3 weeks + but I am running out of options. Will keep a food journal to track things closely and we will see what happens.

NOT GIVING UP!

2010-06-16T07:58:00.001-07:00

This week has not been good. Got down to just blood in my stools. When I say stools, I mean diarrhea. I couldn't go to work yesterday cause I needed to be REAL close to the bathroom as I didn't make it twice the night before. I am at work today but only cause I am not eating so as not to have "issues". I brought saltines to munch on when the hunger pains get too much. Doing the two pair underwear and a large pad just in case of an accident. This SO sucks to have to deal with at work but I need the job you know. "sigh" Anyway, if i go to the dr. they give me two choices: 1- go back on the Asacol (which caused Pancreatitis the first 3 times) or 2- get a coloscopy bag. I absolutely will NOT go back on the very drug or one of its sister drugs to end up back in the hospital with pancreatitis which may I remind every on is DEADLY. And I am not ready to submit to getting any more of my innards removed. They are covering up what is really wrong and it has to do with the foods I am eating. I have been doing better this year since I starting concentrating on what I am eating. Once and a while I will pick the wrong thing to eat and things will get bad for a while but that does not mean I have to give up and just do the bag. It just means I have to keep trying. I know I am on to something since I have had positive results. I have read too many stories of people who have figured out which food it is that they are sensitive to and things have gone back to normal. It takes a while but I think it will be worth it.

Salad

2010-06-09T10:37:00.000-07:00

I was doing really well till I had salad two days in a row. I think I got away with the first day fine but last night I had another and got all bloated and gassy and my colon swelled. This morning there was blood in my stool. "sigh" I need to be able to eat healthy foods. I will keep trying. Maybe I am combining the foods wrong or something. I won't give up as I know I am on to something. Just started a new book called The Gut Flush Plan. So far it says it should help me with my colon. I finished reading about how our hormones affect our body. A book by Jillian Michaels (Master Your Metabolism). Basically I learned that your fat will make you fatter and once fat, you will really need to kick it to get rid of the fat. Her plan is basically eating organics and only eating 4 times a day and ALOT of exercise. Mostly whole foods, no GMO's (genetically modified foods). I think it is a good plan and I am pretty much doing it now. I am exercising but not strenusously. I will have to kick it up a notch. I think my challange is to heal the colon and start over eating correctly so as not to keep upsetting it. Hoping the Gut Flush Plan helps me heal the colon. I will let you know.

Doing Well

2010-06-02T14:13:00.001-07:00

This week my stools went back to normal. Well, normal for me. There is no blood and they are formed. I did have to stop taking my Probiotics when I went on my trip and I did start taking them again when I got back so I think that makes a difference too. I have been on 20mg of prednisone this past week. I will go down to 10mg starting Friday. That is where I was before I went on the trip.
I made a really good homemade baked potato soup this week with all organic ingredients. Yummm. Can't possible do 100% organic but trying make sure all my meats are for sure. I am slowly stocking up on other organic stuff (butter, eggs, potatoes, rice, herbs, pasta). I have found more restaurants that are using organic food so that helps too. I do like to eat out. (-; I am also eating fish more. So far things are going well. I am very happy. I actually feel good today and that doesn't happen often. Of course, I will mow the lawn tonight and that will take care of that. (allergies) "sigh". It's the little moments that count.

Better

2010-05-25T06:13:00.000-07:00

It was very stressful coming back from vacation and being sick. The stress at work doesn't help either. I was up to 50mg of prednisone but now am down to 30mg. I currently have small amounts of blood in my stool. I am hoping by this weekend, that will be gone and I can lower to 20mg of prednisone. I feel good enough to start walking again this week which I have been doing. I think that not only helps me physically but it helps keep the stress down too. I have had a bad cycle last over a month so this is good that I am improving so quickly. I planned all my meals ahead of time and I am eating all organic meats/eggs and fresh fish.

Bad Cycle

2010-05-18T06:36:00.000-07:00

Well here it is, what I call a "bad cycle". It is not just a small flare up as it is going on 5 days now and I am pretty much just losing blood at this point. I have to wonder with all the excitement of my big trip and coming home so sick. I ended up going the doctor last Friday and I have an upper respiratory infection as well as a really sore throat. She gave me an antibiotic and an inhaler. I am feeling better breathing wise as I have been on the meds but the colitis makes me feel crappy. I upped my prednisone to 40mg today and will continue to do so till it starts improving. If I have to go higher I will but trying not to up the prednisone too much. The good news is it has been a good 6 months since it has gotten this bad so I am doing something right with my foods. I haven't been doing too well since I came back cause I don't eat well when I am sick but going to start making meals this week and getting back on track.

Post Vacation

2010-05-13T10:53:00.000-07:00

Well, I made it home from Ireland last night, my luggage made it home today. Better late than never. My Colitis flared up Monday and I struggled with it the rest of the week. I did have some popcorn Sunday night which I have had bad results with before. Sometimes when things are good I can have a little but not this time. I upped my prednisone right away. 30mg, then 20mg which I am still on. Will go back down to 10mg next week. I also came home with a cough and very heavy chest which is probably a bronchial infection. It usually is. I go into see my doctor tomorrow. Overall, I had a fabulous trip and didn't have much problem with my colitis. I was prepared for just in case which I think made me feel more at ease about things.

Ireland

2010-05-09T00:34:00.001-07:00

I am now in Ireland and still doing well. Eating mostly fish and chips and not having any colon issues. I am getting tired of fish and chips though so will have to find other things to eat when I get home. I have to say, I haven't had a bad fish and chip here though. Will exercise more when I get home cause I am thinking all the walking here is doing me some good too. I have had no blood in my stool the whole time I have been here. I bet I am down a good 10 pounds. yippi! I think this is the first vacation I actually lost weight. I am thrilled! Will write again when I get home at the end of this week.

London

2010-04-30T13:20:00.000-07:00

Well, I made it to London, the first leg of the trip. I didn't eat much so didn't have too much trouble. The excitement caused my stomach to be upset but I was able to go to the restrooms when needed. I have had a few close calls here in London where I had to go and was not near a "toilet". I made it though. Sightseeing can get tricky. What is helping is I am with someone who doesn't eat alot so in turn, I am not eating much. We have Scotland and Ireland to go yet and 5 more flights. I am happy that I didn't let a bad colon stop me from going. I am having a great time!

to eat or not to eat

2010-04-27T05:54:00.000-07:00

Today's the day I leave for Europe. The excitement has been building even though I have been trying hard not to think about it. My stools are bloody but semi formed at this point. I am wearing two pairs of underwear and a large pad in case of an accident. I am hoping once I get there things calm down and get back to "normal". When I say normal, I mean normal for me. No blood and mostly formed stools. Been trying to decide if I should even eat today. The less you eat, the less that can come back out if you know what I mean. The trouble I ran into is that I need to eat to take my meds. so I decided to eat early and not alot. I do have crackers with, I thought that might help later if I need them. Hopefully I will be on the Internet a couple times while I am gone so I can update the blog. Wellllllllll off I go.........

Organic Foods

2010-04-20T10:11:00.000-07:00

I have been shopping at lots of different places for organic foods (co-ops, grocery store, Trader Joes) All in all it is pretty spendy but some foods are close to regular priced foods. You can get organic pasta at Trader Joes for what you would pay for regular pasta at the grocery store. Trader Joes also has organic butter for less than the other stores do. I was at Cub Foods this past weekend and they have a pretty nice selection of organic foods. In the produce section it is mostly all together which is nice. Then they have the big "whole foods" section of the store. It is mixed with "natural foods" and organics so you have to be careful. Natural does not mean organic. I talked to a lady at Cub and she explained that Natural meant no preservatives, pesticides etc. but organic means that everything attached or connected to that food was organically done. In the case of my chicken, it meant that even the food that the chicken ate was organic. It is probably most important when buying meat. She said if she can't find or get the organic she wants, she will settle or "natural" or in the case of meat, "range free", "grass fed". I have been eating all organic meats this week and they are really GOOD. I knew it was not right that the chicken breasts had gotten so big at the grocery store, I couldn't even eat one for a meal. Now they are normal size with NO hormones and they taste great.
My colitis is under control at the moment which is a miracle cause I have been worried about my big trip. So far my airport I am flying into is still closed. I have a week before I leave so hoping to still be able to go. I am also hoping to update my blog one more time before I go.

Sustainable table

2010-04-12T07:54:00.000-07:00

Sustainable agriculture is a way of raising food that is healthy for consumers and animals, does not harm the environment, is humane for workers, respects animals, provides a fair wage to the farmer, and supports and enhances rural communities. I believe that in supporting this sustainable table, it will help my health and I will feel better about how the animals and people dealing with them are treated. It will take quite a bit of research to achieve this but I am willing to put that kind of time in. I have learned alot already. On the Sustainabletable.org website you can put in the zip code of where you live and it will list the closest Farmers Markets, restaurants etc that serve "sustainable" or organic food. We went to two of them this weekend. First thing I learned is CALL FIRST. At the Scenic Cafe up the North Shore they advertise on their website as using organic food "when possible". On their introduction on sustainable table, it says they used grass fed beef and free range chicken and organics "when in season". Apparently this means NOT all the time. We got there and I asked if the beef was grass fed or the chicken free range and the answer was NO. I even had the waitress go ask the chef if anything meat was organic. The answer. no. hmmmmmm so my next question was "since when is beef, pork and poultry NOT in season?". I didn't ask it out loud, instead I ordered the Halibut. I was really disappointed as we drove a long way to get there. The next night we ate at Sara's Table in Duluth. I called ahead to make sure that the meat was grass fed, free range. They assured me it was along with ALL organic side dishes. We had beef and it was good. It wasn't any more expensive than at a normal restaurant. I will definitely eat there again. Apparently organic IS in season all year round. (-:

New Approach

2010-04-09T07:16:00.000-07:00

Last night I ate lean turkey bacon and that is all the meat I have had so far this week. I am going to be more conscience of where the food comes from that I am eating and how it is processed. This weekend my mom and I are going to try some local restaurants that get their beef/produce from local farms who do not use antibiotics or hormones nor do they feed their animals food that wasn't naturally made for them. When I go grocery shopping on Sunday, it will be mostly in the organic section. I know it will cost more but I am worth it!!! I can watch for sales and find the best places to shop price wise. It seems weird but I already feel better.

You Are What You Eat

2010-04-06T06:09:00.001-07:00

So, if I am what I eat, then what am I eating? There is the million dollar question that I wasn't sure I wanted the answer to but last night I got it. I watched a documentary called Food, Inc. A Robert Kenner film. After watching this, there is no wonder that America is getting fatter and fatter and sicker and sicker. It was heartbreaking to see how some animals are treated as well as the people who process the animals. For those of you who have watched "Who killed the Electric Car", it will be no surprise to you who is involved in this insane food process. If we want safe food to eat, we will need to rely on ourselves. That much I will say. From now on, I will be going to the organic section and reading labels ALOT more carefully. I do not want to eat chicken pumped full of hormones so they grow twice as big and twice as fast as a normal chicken or beef that was feed antibiotics then corn to fatten them up which isn't good for them OR us. Genetically altered food does not sound good to me. I know our scientists are so proud of what they have done but are we not alot sicker today then back in the days before altered foods. It is frightning to me is to see that they are doing all these things to our food. I don't want a hamburger that was potentially made from 500-1000 cows, some of which might have been sick. YUCK! I won't look at food the same way ever again. I recommend watching this documentary to anyone who is concerned about what they are really eating.

One day at a Time

2010-04-02T07:37:00.000-07:00

Today I feel half way decent. My stools are long and scraggly but no blood. Haven't felt real good most of the week. Colon has been swollen and I have a new weird pain on my right side in the back area. Don't know what that could be. Let's hope it is not "another" thing wrong with me. The list is getting way too long. I tried turkey/beef hot dogs this week. Don't think I did real well with them. I think I will have do a meatless weekend and see what happens. uugg I am having a real hard time finding things to eat without meat. I don't do well with fruit and veggies either so that leaves pasta/breads/sugar. HMMMMMMMM wonder why I am not losing any weight. "sigh" One day at a time right............

The Stupids

2010-03-29T07:05:00.000-07:00

So I KNOW that popcorn is not a good thing for my colitis nor is real ice cream but sometimes that craving comes on strong and I give in. Then the consequences hit me. By yesterday, I had a trace of blood in my stool and a raw behind from too much diarrhea. "sigh" Baby wipes help with the raw behind and Imodium AD helps with the diarrhea. It is a 2 pair underwear day as a precaution. I am not sure I have complete control today. That is a horrible feeling not to have complete control and be at work. Why do i put myself through this, I don't know. There are some stressful things I have to deal with at work this week which are weighing on my mind as well. Hoping to work through them fast and get the diet back on track. Keeping my prednisone at 10mg/day till after my big Ireland trip in a month. I had to go to the dr. last week cause the cold I had was not going away and we agreed that was the best thing to do. If all goes well, when I come back I can try to get down to 5mg at least every other day.

post mini vacation

2010-03-23T06:46:00.000-07:00

Today my colitis is just o.k. On my mini vacation I had some "questionable foods" and ate meat too often. What I mean by questionable foods is that we stayed at a place where the food was not very good and sometimes we didn't even know exactly what it was. Anyway, I am doing mostly soup this week to calm things down. I am at 10mg of prednisone a day. I want so bad to try the 5mg every other day but I am 5 weeks from my big vacation and I don't want to risk things going wrong at this point. Still walking regularly which feels good but not really losing any weight. That part is frustrating but I will deal. I have lots going on in my life this next couple months so if I can keep things calm, I will be happy.

Another Day

2010-03-16T05:28:00.000-07:00

Well, the colitis is still under control. Sometimes while experimenting with foods, it will be bad for a day or two but I am always able to change foods and get it back under control. The plan to lose weight however is not under control. Did I say I was not good at the "diet" thing. "sigh" Everyday, I will just keep trying. I am going out of town on a mini-vacation the rest of the week so I will update my blog early next week. I am hoping to keep up the walking while on vacation.

Emotions

2010-03-11T07:28:00.000-08:00

It is an emotional day for me as I ready myself to go to Children's Hospital to donate quilts and pillowcases in Vanessa's name. She was my best friends daughter and she died of cancer 6 years ago yesterday. I always take this week to donate quilts in her name. It is bitter sweet. On one hand she is not in pain anymore and she would love that I donate the quilts. On the other hand she is missing from our lives and that is hard to deal with. Emotions definitely play a role in my colitis so I am trying to think positively and stay focused on my health.

I have been playing with meat this past month and I have noticed that I can't have it everyday anymore. I thought I could get away with more pork and chicken as opposed to beef but I have noticed that I do better if I only have meat every other day. Next week, I will try to add more fish and see how I tolerate that. I started 15mg of prednisone today down from 20mg and I am supposed to do that for 10 days. So far the bone pain is still gone and my stools are normal.

All in all, I am doing well considering I had to clean up cat vomit off my dress shoes this morning. (thanks snoozer).

Revamping Plan

2010-03-08T06:31:00.000-08:00

O.K. so have I mentioned that I am not very good at the whole "diet" thing. I got on my scale 4 times this morning. The first time it said I gained 5 pounds, the second time it had a error, the third time it said I gained 1 pound and the fourth time it said 2.5 pounds before I even got on. I gave up. It clearly didn't say I lost any. Although, my pants have been fitting better as I have been walking consistently so maybe at least I am losing inches. I know, I need a new scale. Sometimes I think the digital ones are NOT the best. I don't want to pay a whole lot for one though.
Anyway, I am finding it is hard to eat good when you don't tolerate fruits and veggies very well and sometimes salad can really mess you up. "sigh" I have also learned that I can't eat meat as much as I want to. This is particularly hard cause I am a meat and potatoes girl. UUGG SO, I have decided to do the dreaded food diary. I keep track in my head as far as to what might trigger the colitis but I think I need to keep an actual count of calories. I am apparently eating more than I think if I am not losing any weight. Starting today I will be keeping track of calories. I want to stay under 1500 calories but have one day a week where I don't count. This Friday I am going out with some Friends for a fish fry so that will be my one splurge this week.
Let's see how this plan works......

Update 3-4-10

2010-03-04T06:13:00.001-08:00

It has been just over a week and I am down a whopping pound and a half. I guess that is better than nothing and pretty good considering how much prednisone I have been on. I am currently in the middle of my 10 days at 20mg. The tennis elbow is getting better and the aches are under control. My colon has stopped hurting so much and my bowel movements are good. Going to keep working on the diet and exercise.

Delusional

2010-03-01T07:46:00.000-08:00

o.k. The fruit and veggie thing isn't working out so well. Not exactly a shocker. I had one apple and the next day I paid the price. Then I became even more stupid and had red meat two days in a row which I KNOW not to do and my colon hurt real bad for the next several days. UUGG. I think what happens is in my head, I want to be normal and not have this issue so I convince myself that I am o.k. and can eat what I want. In other words I get delusional. "sigh" So now what? Well, I will stick to my cooked veggies I know I can handle and go back to red meat only once a week and when I am doing a little better, I will try a salad here and there. I handle bananas well so I will do those more and try to maybe have a cooked apple at night for a snack with cinnamon and sugar instead of eating it raw. There has been a few other suggestions posted for me too so I will look into those this week as well. Maybe I will find the right way that works for me. Thank you again to those making comments and suggestions. It is very encouraging for me!

Melt Down

2010-02-24T12:16:00.000-08:00

I am having a meltdown. Truth be known, I have these occasionally. I think they help me deal in the long run. Here's the what happened:

I got to to the second to the last day of my 20mg prednisone cycle per my last dr. visit and the long bone pain was unbearable last night. I called the dr. today and she said to up the prednisone back to 30mg for 5 days, then 20mg for 10 more days, then 15mg for 10 more days then back to 10mg. I looked up long bone pain and it can actually be from me being on prednisone too long (been 2 years now). SO, how I ask you can that which can cause the pain also get rid of the pain? I looked up Rheumatoid Arthritis and Osteoporosis and I don't think I have those although it is possible I have bone loss at this point which can cause the pain I am experimenting. I guess we will just wait and see what happens now.

Fruits & Veggies

2010-02-22T10:33:00.000-08:00

Today I lower my prednisone to the 20mg per the doctor. I stay on that for 3 days, then I go down to the 10mg. So far the long bone pain is still gone and my colitis is under control. My tennis elbow is much better since I did the hot/cold thing this weekend and used my tens unit on it for stimulation.

So here it is, I have this big trip coming up in 64 days. I NEED to lose some weight! The prednisone has not been good for me in this area. It makes me want to eat nonstop and keeps me all puffy (like I need the help in that area). Anyway, my goal is to lose 20 pounds before I go. One thing that has been an issue with the colitis is fruit & veggies. Every time I start eating more than a little of them, my colitis acts up. I know it is not healthy to avoid them either so here goes. This week I bought apples and oranges. I am thinking one every other day. I will also make sure I am getting at least one veggie a day as well. I seem to tolerate bananas well so I will throw some of those in there too. I will up this as my body will tolerate it. The prednisone makes it hard to lose but I am going to give it a shot. I walked this morning and plan on walking 5 days this week. I have also started sit-ups and daily stretches.

Improvement

2010-02-19T09:33:00.000-08:00

My colitis is still very under control. Almost no symptoms. I lowered the prednisone to 30mg today per doctors instructions. Most of the aches are gone and I walked 4 times this week. The elbow, however is giving me some serious pain. I am not very good about doing the hot/cold thing but after the intense pain I was in yesterday, I did the hot/cold packs for 3 hours last night. The brace helps some but need to keep on the hot/cold therapy. I will also look into the vibration therapy per suggested in comment earlier this week. Thank you. I appreciate any and all suggestions/comments. The goal this weekend is to keep up the elbow therapy and see if I can get that pain under control. "sigh" If it isn't one thing, it is another. This getting old is GETTING OLD!

The Aches

2010-02-16T05:40:00.000-08:00

The last couple weeks I have noticed that my bones have started to ache. It felt like the arthritis in my hands was in my entire body. It finally got too much and I went to the doctor yesterday. She confirmed that I have tennis elbow. I didn't even know you could get that without playing tennis. You learn something new every day. Anyway besides having to wear an arm brace to help with the tennis elbow, the only other thing I could do to help with the "long bone" aches is to up my prednisone to 40mg. UUGG I worked so hard weaning it down to 5mg & 10mg and now I have to start over and I don't even have a flare up. My colitis has been doing great. This is a quick up then back down doctor promised me. I do 40mg for 3 days, then 30mg for 3 days, then 20 for 3 more days then down to 10mg. I am starting to wonder if I can get under 10mg if I am just going to get achy when I get there but I will try to wean back down to 5mg again. I did add a multivitamin to my daily meds this week. Mom are you happy, I am getting more calcium.

One week at a time

2010-02-12T05:42:00.000-08:00

So Tuesday I bought my Ireland tickets and got too excited and caused a minor flare up. By the end of the day, I had diarrhea so bad I could barely make it to the bathroom. I had to take some Imodium AD a couple times to settle things down. I took deep breaths and tried not to make my stomach excited. By Thursday, I was back to normal stools and never had any blood. Whew. THAT is SO exciting. I walked 4 times this week which I also think is helping. It circulates the blood in the body which stimulates healing. One week at a time. I notice if I do have a flare up I am able to recover much more quickly than I used to. I have had flare ups so bad it took months to recover. This is good, every day I feel a little better.

Excitement

2010-02-09T08:12:00.000-08:00

Today I booked a flight to Ireland which I am very excited about. The only thing is sometimes excitement can cause a flare up with my colitis so I am trying not to be overly excited. I started doing 5mg of prednisone every other day with 10mg the rest of the time. This started on Saturday and so far so good. I have been feeling pretty good and still trying to walk at least 3 times a week. The fact that I feel good, makes me "feel good" if you know what I mean. Going to do whatever it takes to keep on this good streak. I do not want to have a flare up and be on a 12 hour flight. Doing my best to make this trip a good one.

Doing well

2010-02-05T06:31:00.000-08:00

I have walked 3 times this week, 20 minutes each. Still took 10mg prednisone a day. My stools are good and I feel pretty good. SOO happy! Seems like watching what I eat is really working. I still have some pain in my colon area but no blood in my stool which is important. Will keep you posted. Obviously the colitis isn't gone but I am managing it well right now so I will keep doing what I am doing and maybe think about going down on my prednisone next week if I have a good weekend.

New Week

2010-02-01T08:07:00.000-08:00

Had a good weekend. Pretty much back to almost normal stools again with no blood. This is good. This means that my foods DO control the colitis. I did have pizza yesterday but will make sure not to have any red sauce the rest of this week. Making Cream of Broccoli soup tonight for dinner. Yumm. I am going to start back up using the Ensure. Then I will know if that was affecting things or not.

Felt good enough to actually walk 20 minutes today. Any of you who have colitis know that most of the time you just don't feel good. When your insides are all out of wack, you might look fine on the outside but actually feel like crap most of the time. When you feel like crap, all you want to do is NOTHING. It feels good to feel good I must say. I am not at 100% mind you but working on getting better every day and exercise should help me as well.

Planning a trip to Europe this spring so need to #1 lose weight so I fit in the airplane seats. A coworker very rudely pointed out that I might not be comfortable at my current weight. There is always one person in your life that will be brutally honest with you and I work with him. (-: Anyway, #2 will be to keep my colitis under control and maybe even be off the prednisone by then. We will see how things go. Even if I could get the prednisone down to 5mg/day and under control, I would be happy with that. I have to say, I am very nervous at this point to even get on an airplane with Colitis but I will NOT let this disease rule my life! For now I will continue to work with my foods and exercise.

flare up

2010-01-29T06:38:00.000-08:00

I had a small flare up this week. Tuesday, I had a little bit of blood in my stool some diarrhea. I went through the foods I had eaten the couple days before and I had had red sauce three days in a row including tomato soup, pizza and lasagna. I have also been drinking one Ensure daily. I stopped eating red sauce things and stopped the Ensure just in case it was a dairy issue. Today (two days later) things are much better. No blood and mostly formed stools. I will keep monitoring closely the foods I am eating in relation to the symptoms I have. I believe this is key.

Update

2010-01-25T12:10:00.000-08:00

This weekend was the first time I have had regular bowel movements with no blood and no mucus. I have very little pain in my colon area, I am not swollen and I am feeling half way decent for a change. Obviously something is working. I want to stay on easy to digest foods as I add in more than soup. That basically means not a lot of meat and whole grains but more pasta's and only cooked vegetables.

I have made the decision to cancel my doctor appointment on Friday for the "exam". I want more time to continue to "practice" my eating patterns and the more I think about it, the more I want a regular colonoscopy, not just the partial one that they want to do which will not give them the whole picture. I don't see the point in the partial colonoscopy. If we (me and my dr.) do decide they need to look "inside" in the future, it will be a regular colonoscopy. In the meantime, I will be watching my diet and slowly try to lower my prednisone. I am still on 10mg this week but if this week goes well, next week I will do 10mg one day, 5mg the next and so on.

New tactic

2010-01-22T06:05:00.000-08:00

So I made it through the week with just soups except last night. I broke down and had my favorite sandwich at Bennigans. "the Monte Cristo". All I can say is YUMMMMM. If you haven't had it, you should try it. I also took home a bowl of the "Ultimate Baked Potato" soup. That is my second favorite thing to eat there. I am having that for lunch today. Lunch time is not coming quick enough. (-: Anyway, my stool this morning was still formed and so far I am doing fine. No blood in my stool at all the past couple days or today so far and that is a good thing. I apologize to my friends for being so graphic but those who have ulcerative colitis reading this need to know.

As I was eating breakfast this morning (malt-o-meal), I was thinking that maybe I am drinking too much with my meals. I have been kind of monitoring it lately to see how much I am actually drinking with each meal and for breakfast I am drinking about 16oz. of water. I wonder if I am not digesting food as well as I could be because I am drinking too much liquid with my meals. Breakfast is the meal I drink the most with I think because it is morning and I am dehydrated. Starting tomorrow, I am going to drink more water right away when I get up in the morning and stop drinking 20 minutes before I eat and try not to drink with my breakfast. I will have to do some more reading up to see how long I should wait to drink after my meal so for now, I will try to wait 30 minutes.

To add to that, I want to get off the "soup" plan and start a new one. I started this eating plan last year but didn't stick to it. It is by Sherry Brescia and it is called Great Taste No Pain. It is all about combining foods in the right way to digest them better. I will start on this plan tomorrow. If you want to learn more about this plan, please see her website at http://www.greattastenopain.com/dl/standard-t87295.asp

The goal here is to keep tweaking things till I find something that works. I will blog a couple times a week to keep you all updated.

2010-01-18T06:27:00.001-08:00

Well, I made it through the weekend. I ended up not eating very much as my organs kept wanting to swell. If I don't eat, the swelling goes down. So far today, I had malt-o-meal for breakfast and I am doing fine. I brought tomato soup in for lunch and a can of Ensure for a snack. I thought the Ensure might do me some good as it has alot of vitamins and protein in it. I made a really good potato soup last night from a mix. It was called Bear Creek cheesy potato soup. YUMMM! That is what I plan on having for dinner again tonight. I should mention that I started taking probiotics a couple of weeks ago. They are supposed to help. This weekend I bought fish oil as I read that it helped someone with healing up their colon so I will start taking that too. I am down to 10mg of prednisone a day and very little blood in my stool. I also have less pain in my colon so this soup/not eating thing seems to be working. We will see what the rest of this week brings.

Yesterday I started a project at home to keep me busy and keep my mind off of things. I feel half way decent most of the time now so this is the perfect time to dig in to a big project. Last night I emptied out my sewing room and tonight I will pull down wallpaper and pull up the carpet. Thanks to a sale at Home Depot, I got 2 gallons of orange paint for $26 with a $10 rebate and bought a really cool vinyl flooring that looks like wood floor that I can easily install myself. o.k. well, they say I can install it easily by myself but that remains to be seen.

2010-01-16T15:47:00.000-08:00

The first day is always the hardest but I stuck with it. What made it especially hard is that some friends of mine lost their son this morning. It upset me to the core. No one should have to lose a child. My best friend lost her daughter a few years ago and it brought back all those feelings. So my normal coping mechanism kicked in and all I wanted to do was eat junk. Somehow I managed to keep busy and didn't waver from the plan. I have to keep going no matter what. My life depends on something working. I won't give up till I figure out what that something is!

Bad Day

2010-01-15T06:34:00.000-08:00

On the way home from work yesterday I called my oldest and dearest friend Andy. She was having a bad day, no week really. She wanted to meet and go out to eat and download about our week. I obliged. It does not take much to get me to go out to eat these days especially since I haven’t been cooking. After we ate, we went back to my house to go in the hot tub and talked some more. Sometime in the afternoon, I had noticed that I had begun to swell in my upper abdomen/chest area. This still happens sometimes and they don’t know why. Last time it had gotten really bad, I went to the clinic and the doctor said my liver was swollen as well as my pancreas. I was still trying to stop the pancreatitis from coming back at that time and the swelling was a sign that it was there again. Instead of going back to the hospital then which is what the doctor recommended, I went home but agreed to have someone stay with me in case anything happened. After a couple days I was feeling better. SO back to last night, I had started to feel the swelling get worse especially after dinner. Andy left around 8pm and by then I was so swollen I felt like a big fat sausage and couldn’t move well. As soon as the door shut behind her I started to cry. I knew I should have asked her to stay but as my other best friend who I then called pointed out, I don’t ask for help when I need it. I think I expect people to just “know” when I am sick but that is not fair. People can’t read minds and for the most part when you look at me, I look just fine. I can’t expect people to know that my insides hurt and that I need someone to stay with me cause I am scared and shouldn’t be alone when I am that sick. So lesson learned. Next time, I need to open my mouth and ASK for help.

So today, I am still swollen and still not feeling very well. The swelling has gone down some. I don’t think I will make it through work today unless it gets much better. I will not eat for now as food will make it worse. I still need to get to the grocery store as I want to start my new “eating plan” tomorrow. We will see what today brings.

Practicing Medicine

2010-01-14T09:54:00.000-08:00

My mom says that doctors are just “practicing” medicine. She is right. If they are just practicing, then they don’t have all the answers. Maybe I should try “practicing” a little myself. Right now my colitis is not bad. Not in remission mind you but under control. I have what they call a sigmoidoscopy scheduled for the end of this month. A sigmoidoscopy is basically a shortened version of a colonoscopy with no pain meds and you are completely awake for it. I am SO excited. Anyway, they want to see how bad the colitis is now and check for cancer if they see anything “unusual” looking. I would like the colitis to stay under control from now on but especially for this procedure. My ultimate goal is to figure out a way to keep things under control without having to be on any medicines as they are just causing more problems. I realize that stress plays a big roll in my flare ups but would like to concentrate on the food part right now. At this moment, I don’t have a lot of things causing me stress and since my weight is becoming a “huge” issue, we will concentrate on that.

My plan is this: starting this Saturday, January 16th, I will eat nothing but soft foods (mostly soups/broths). Malt-o-Meal for breakfasts and soups etc. for lunch/dinners. I want to continue this right up to my appointment in a couple weeks. I figure, it should help me lose some weight as well. I know that getting enough protein is an issue so I will try to melt cheese and use butter and dairy products as much as possible in my soups. When I have things under control, I can usually handle dairy pretty well. I will have to change things up if I think dairy is becoming a problem but to start out with, I will give that a shot. In doing this, I am hoping to let the inside of my colon heal, then gradually start reintroducing normal foods. It is worth a shot to me. The doctors I have been to see, don’t think that changing my diet will help but I have to try something. I will post updates on this blog so that whoever wants to can see how I am doing.

Ulcerative Colitis- For those that need answers

2010-01-13T11:15:00.000-08:00

I was diagnosed with Severe Ulcerative Colitis 2 years ago and have been struggling ever since. They put me on a steroid plus Asacol and after several months I ended up in the hospital with pancreatitis. I then learned that one of the side effects of Asacol is pancreatitis. VERY painful, I must say. “sigh”. It took months to recover from a severe attack and several hospital visits. I also had to have my gallbladder removed last November and I hadn’t had any trouble with that till the Asacol either. Anyway, my GI dr. was in total denial that the Asacol would cause the pancreatitis even though I did some research after and it does list that as a side effect. Two times since my initial hospitalization for pancreatitis I stopped taking the Asacol, then restarted again and got the pancreatitis back both times. With dr. still in denial, I refused to go back on the Asacol. I have not had pancreatitis since. I have however had to keep on the steroids to keep the colitis under control but it is causing me some other bad side effects including weight gain. I went to a new GI and her suggestion was a medicine for Crohn’s and guess what, it lists pancreatitis as a side effect. Like I want to go through that again!

Is anyone else experiencing the same frustrating issues? Basically the doctors are telling me that my only other options are the Remicade which is pretty extreme or to get a colectomy. COME on. This disease is not that new and it is very frustrating to not have more options. The other issue I have besides that is the fact that all this medicine is expensive. Even with my insurance the Asacol was $96.00 every 3 weeks and the new medicine the second GI prescribed is $150.00/mo. Who can afford that??

I am open to any success stories of other options or even similar experiences to mine. I need answers but have been doing research and haven’t got any good answers yet. Is there anyone out there that can help those of us that are still trying to get off the steroids but can’t take the Asacol or similar drugs?

Chris