Ulcerative Colitis Tips


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Should I Take Remicade?

I was diagnosed with Ulcerative Colitis in 2000.

After a trip to Mexico, I found myself unable to eat or drink water, losing about 25 pounds. I finally told my husband on the Fourth of July that I needed him to take me to the emergency room. The doctor hydrated me and told me to consult a GI doc. I followed his advice and was quickly diagnosed with UC and put on prednisone and Asacol (between 3 pills, 3 times a day). Last January I suffered a very stressful breakup with my husband and move, triggering a horrific flare. After a colonoscopy, where the doctor told my mom that he’d never seen a colon as inflamed as mine, he put me on Imuran. The drug was horrible, and I contacted Kaiser and told the GI coordinator that I wanted to go back on Asacol and wean off prednisone (which I was on to fight the flare). She agreed, and I had been in remission since March of this year. When I started flaring in March, it wasn’t very bad, so I decided to combat it with diet (low residue). It never got as bad as it did in the past (weight loss, vomiting, diarrhea), so I hoped I could get through it without medical help, but it didn’t work as planned. I was training for my mt. bike racing season, and when the flare got to the point I couldn’t work out anymore, I called my GI office. The PA put me on Prednisone, and within a couple days, I was back eating normally (I have always been able to eat and drink anything) and riding my bike.

Yesterday I had a colonoscopy because the PA thought that my disease must have progressed since my last flare in December ’09. In my narcotic stupor after the procedure, the doctor came to tell me (and my mom) that the inflammation is all the way up the colon except for two small parts of it at the top and bottom. She suggested I get on Remicade. With that I got up and went home. Didn’t speak the entire car ride because I was so devastated. I went into the procedure feeling healthy (I raced my first race of the season last Saturday and didn’t come in last!) and now I was told that I am really sick. Why Remicade?! I sat down at my computer and started looking up everything on this drug. Scary, yes. Life changing, yes. Miracle, yes. But do I need to be on it? I’ve been in remission for long periods of time (symptom-free). I take Asacol daily, and Prednisone has always worked when I have battled a flare (40mg taper). Why are we now talking about what’s considered a “last resort” drug? Has this happened to anyone else? I can’t seem to find those sufferers of UC who don’t really suffer chronically. Believe me, I am grateful for this, but I don’t want to start something that, in my opinion, seems so very drastic. Thoughts?

Medications:

Asacol 3 pills, 3 times/day, unless battling a flare and then I take 4 pills, 3 times/day
Prednisone (40 mg taper) when flaring
Multi-vitamin

 

Submitted by “Kimma” in the Colitis Venting Area




6 Responses to Should I Take Remicade?

  1. Vicki Thomas May 17, 2011 at 4:09 pm #

    Wow – what a story. Well, it sounds to me like you’re a similar to me. My colitis wasn’t too severe initially and has now progressed to taking over my entire colon. I found that steroids were fine until I tapered off of them – once tapered I’d flare within 2 weeks.
    I don’t have any experience with Remicade but would like to hear what others have to say as I’m on Imuran and it is not going that great.
    Congrats on racing your mountain bike through your flare! Though be careful- I raced my road bike and cyclo-cross bikes through my flare last season and ended up running down my ferritin stores to the point of basically having nothing. By the time my flare was done I was still too weak to race – so please be careful. Think long term. If I had to do it over again, I wouldn’t have trained or race through my flare. Let your body heal. Get strong and then get back on your bike. I know – hard to do but it might just be for the best.
    Take care. Let us know what you find out about Remicade. Remember to keep the rubber side down!
    cheers,
    vicki

  2. Michelle May 18, 2011 at 7:57 pm #

    Hi there!
    Well, I can tell you that I relate very much to your story and am sorry that you have to go through this. I am sure that you have read my story (look for “Arthritis. Really? From 36 years old to 90 years old in just one afternoon…”)…anyway, My UC was on and off for about 5yrs. Then after finding out that my cousin of 37 yrs had cancer and was dying I took on a whole new stress level. I flared like I’ve never flared before. The prednisone didn’t help…nothing helped. I was in the hopsital for 3 wks (with 3 little babies at home) while there they told me that the next step was to go on Remicade or go see a surgeon. I went with the Remincade and I can tell you that after all of my worries and fears about it…it has helped me to regain my life and stability. I don’t really wonder if a flare is coming…I do sometimes worry about that hospital visit but I think that’s normal. I really did think that my life was over when I found out that I had to go on REmicade, but it has changed my life. For a while, I wasn’t me, ya know what I mean? Now, I’m me again and that is largely due to the remicade. I also started taking Ativan when I would get really stressed so that it would not affect my belly (don’t know about you but my stress goes right to my gut). It me helps to not worry so much and lets me be free of the stress.

    Anyway, I am totally not one to jump on a ban-wagon for medication, but this shit works! And all those side-effects that people say that happen…I haven’t seen one. The only think I see is I am wiped out after my infusions for a day or so.

    Well, I hope this helps.
    Good luck,
    Michelle

  3. SerenityNow June 1, 2011 at 6:21 pm #

    I start Remicade next week myself. I saw my GI doc today and asked why so many people are scared of it or refuse. He said it does sound scary but the chances of problems with it are about 1 in 1000 whereas my UC has a 1 in 10 chance. We discussed side effects and concerns and summed it up well. He said the real monster here is the IBD. After my last flair, it sure did feel like a monster to me. I never want to go there again and he said I couldn’t afford to.

  4. Michael A. Weiss June 2, 2011 at 4:34 am #

    Re: Remicade and the “Anti-TNF Agent” Drugs for UC and Crohn’s Disease

    I have Crohn’s Disease for almost 30 years and have been through every possible Treatment but nothing was so more immediately successful than Remicade than Humira and then Cimzia (as my body ultimatey “rejected” the Remicade” – BUT THAT DOESN’T HAPPEN TO MOST PEOPLE.)

    Look, the illnesses we have are auto-immune in nature so the most effective medications hone in on that. For me, it was the right decision – at the time. I was also spooked by the Disclaimers and indications of potential long-term problems but that’s like “Butch Cassidy and the Sundance Kid” looking down at that Cliff they had to jump in order to escape certain capture (and death) by those lawmen chasing them. THEY HAD NO CHOICE and were doing to deal with the consequenes later.

    It has been 5 years since I started these Ant-TNF Drugs and candidly I have run into pretty serious Respiratory Problems from the Cimzia which I am currently working through. But I never forget that they have me 5 years of “In-Active” Crohn’s – and in retrospect once I get these Respiratory issues resolved – perhaps a small price to pay. And please don’t forget that I am apparently in the minority of people who suffer from the side effects – the language of which is written by Lawyers for the Drug companies anyway!

  5. Ostomy Outdoors June 3, 2011 at 5:21 am #

    There are some positive thoughts on taking remicade at the Ostomy Outdoors blog: http://ostomyoutdoors.wordpress.com/tag/remicade/

  6. Nicole August 12, 2012 at 4:34 pm #

    I am 31 yeas old, and I have been diagnosd with UC for 2 years now. I suffered for nmany, ,many years before getting the diagnosis. I was on a trip to Hawaii and miserable the whole time. Although, I do know where all of the batrooms are there……. : ) When I got home I spent another miserable week not eating, throwing up blood, and living in the restroom. My sisters took me to the ER and turns out I had a fissure. They did surgery and I was referred to a GI, who kept me in the hospital for 5 days. I have been on Asacoal, prednisone, amitriptalyne, acid pills, allergy injections and colozal. None of this seems to be working for me. I have NEVER gone into remission. I started Remicade last week and am trying to be very optimistic for “normal”. I am not sure what normal is but I am praying for it! I was given a food allery diagnosis 5 years ago, and ankylosingspondilitis sp? At one point I was eating plain turkey and rice for about a year because all food made my lips and throat swell. I am able to eat most foods, and of course have full cheeks from the prednisone, but the prednisone and other meds are no longer working. It is a daily strggle to have this disease. I was a very active, energetic, and fun person. Now I just look for restrooms and hybernate in my house. I have truly lost all friends and struggle with the thought of any medication making change! hoping for miriacles! : )

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