Back from three week hospitalization... Questions about Imuran.

Hey all!

I went to the hospital three weeks ago during a major flare-up. I didn't pack my bags and thought if they admitted me it'd only be for the weekend...

Three weeks later (today) I was released to the world. The hospital wasn't bad but it was as boring as hell. I didn't know I would be staying so I didn't pack anything. It turned into three weeks of just watching TV.

They reason they admitted me after the colonoscopy was because I had some major inflammation in my colon (right side) as well as full Ulcerative Colitis (before some doctors thought I only had proctitis).

I'll keep it short... I was put on a "TPN" line through the neck for two weeks. They gave me lots of vitamins, iron and food supplements. Then my vein rejected the line--or something like that--and they moved it to my arm. Since I wasn't eating on TPN they put me on normal food. First it was just soup bases (like miso), then over a couple of days they put me on solids. Since I'm a vegetarian it meant vegetable stew and tofu for every meal with a side of rice porridge.

When I went into the hospital I'd have re-occurring stomach cramps, bloody stools upwards of ten times a day and I felt downright miserable. Now I still have some blood but not nearly as much (about 3% of what I had). My stools are still diarrhea but they're infrequent; I only have 2-3 stools per day. The one re-occurring symptom throughout all of this is lethargy... I have very low energy and have had very low energy for awhile now. I think eating more will help so that's what I've been trying.

Right now my diet consists of udon, veggie-sushi, omurice ("omelet rice") and other things that aren't hard on my stomach. I'm drinking some carbonated drinks now but I mainly try to drink grape juice, orange juice and water.

My doctor spoke very little English so there are some gaps in what he told me to do. I was on 9 Asacol a day in the hospital and now I'm on 6 Asacol. I'm also on 50mg of Imuran. I've done some research and think it was a wise choice. I made it clear that I didn't want to take steroids because my sister was on prednizone as a teenager for several years (on and off) and the side effects were horrible (her face swelled up like a blow fish and the kids made fun of her so bad she had to be home-schooled).

Anyway, I was just wondering if I'm on the right path diet and med-wise. Anything I should be aware of? Anything I should avoid?

I'm also planning on doing a lot of outdoor stuff in the coming days. I have a friend visiting this week from Canada and I'm playing tour guide. Should I tough through these sleep spells or give into them? I seriously could sleep for 12 hours a day (and did in the hospital).

The doctor wrote me a referral to go to another hospital in two weeks for blood tests due to the Imuran and I have to return to that hospital once every month for the entire year. I guess Imuran is one hell of a drug?

Sorry this post is a little haphazard as well. I've been laying in a bed watching Japanese TV for the past three weeks... you can't blame me!

Cheers.

I have been on imuran for a long time aswell as prednisone and i seem to be having flares all the time. I keep reading that all you guys are on imuran and it is such a good drug but it really isnt doing alot for me. I am in my 10th year of colitis and have spent more time with flare ups than in remission. I have not had any operations and am on the maximum of all drugs possible. Its starting to look like i may have to lean towards having my large bowel out and the small reconected. The good thing about that is I will be free of the drugs and the colitis forever as i am only 34. Am waiting to see what my next colonoscopy will bring as i have to have biopsy's every 10cm ( 7 in total) taken to make sure i dont have cancer. Am feeling very unwell tonight think it is from the steroids being reduced each week. My body has gotten so use to them. I spend more time on them than off them. Each time I start to reduce them my colitis starts getting worse and i am put back on high doses. Am starting to seriously think about having the major operation to get rid of this ill health and finally be back to a normal life..

noooo...don't do the imuran....bad drug. I was so sick on it.

I think it's irresponsible and wrong for some of us here  to tell someone what to do or what not to do.  I realize it's probably the phrasing that people use but this forum is about sharing their different experiences and allowing people to learn from them.  I would never tell anyone to use Imuran or not to as a pure statement of advice.  I would share with people my personal experience and they can take what they want from it.

Imuran is a very good drug.  It has a long track record, specifically in the treatment of UC.  It also has a safe record despite what some people post.  Yes, it's a potent drug but it's reserved for the treatment of UC that is stubborn and difficult.  Many GIs have a lot of experience with it and often recommend it and rarely do people have negative side effects.  Those people that do have side effects can stop taking it and any negative side effects will usually just go way and reverse themselves.  And yes, there is a small group of people that is really does nothing for.

Also the nature of Imuran is very simple.  It works for the majority of people but for the minority it can cause a quick and severe reaction, hence the posts we sometimes read from people.  For those that it does work for it often works very well and for a long time without problems.  In my opinion it is definitely a drug worth trying unless someone justs want to go straight to the scapel or wants to try alternative off the beaten track remedies. 

Bottom line, I think your doctor is on the right track.  Imuran has worked very well for me and I wish my GI docs had used it earlier, many years earlier.  I lost a good 8 years to UC due to bad uncontrolled UC.

Hope this helps. 

MyUC

Thanks for all the useful advice, guys.

I'm on 50mg of Imuran right now... it seems like the majority of people here are on a much higher (150-200mg) dosage. Do you think I should up the dosage as well when I have my blood test?

I don't think the medication has started being effective yet. I've been on it for fewer than three weeks. Despite being discharged from the hospital, my energy level is still majorly in the pits and I find that I still have quite a lot of blood in my stool (just not as much as I had before I was admitted to hospital).