New member: Impending Decision RE: Remicade, 6-MP, or Ileostomy

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New Member

Date Joined Apr 2011
Total Posts : 5
   Posted 4/24/2011 2:08 PM (GMT -6)   

Hi, I’m new to this site and I'm trying to research the success rate of going to a permanent ileostomy for people with Crohn’s.  I’m hearing a wide range of opinions about whether or not it’s a good idea and I’m struggling to get clarity.  I posted on the Crohn’s section and have also been encouraged to post on the ostomy section, so here goes my long message. . . . 

I’d been told I had ulcerative colitis for the past 16 years, I had j-pouch surgery 14 years ago, and have dealt with chronic (often "simmering" and sometimes really flaring) pouchitis pretty much from day one of going from a temporary ileostomy to a j-pouch.  Now, I have been diagnosed with CD because mild/moderate inflammation has shown up in my duodenum and small bowel.  It was the first endosocopy I'd ever had and I'm convinced that I've had unexamined CD symptoms for years. I believe that my j-pouch is just an inflammation-generator that has never adapted to functioning as a "colon" and it needs to be removed.  Over the years, I've tried Asacol, Pentasa, Entocort, various antibiotics, and Canasa suppositories, while also being on probiotics nonstop and avoiding wheat, dairy, junk food, etc.

I'm getting lots of pressure from my GI to go on Remicade or Remicade + 6-MP, but I have serious concerns. The side effects terrify me, as does the idea that I may be signing on to suppress my immune system for the rest of my life.  I've really wanted to go to a perm ileo and now my GI is saying that, with the new diagnosis, the disease could show up elsewhere and then I'd end up needing to be on the same drugs either way. I've been on prednisone for two months, which is buying me time at the expense of my bones, and have just tapered down to 20 mg/day. I feel great (prednisone-induced) and am functioning well but, if history repeats itself, I will need to make a decision here shortly because my pouchitis symptoms will flare up again when the prednisone is reduced. I'd like to at least try the approach of nonstop rotating antibiotics before I go to the big guns of Remicade, but my GI doesn't agree and thinks I'm wasting my time.  My first choice would be to go to the perm ileo and would do it tomorrow if I had a good chance of achieving success  - i.e., being medication-free or taking medications that are less toxic than Remicade and 6-MP.

Has anyone with CD ever weighed the options of Remicade, 6-MP, and permanent ileostomy? If so, I would really appreciate any info you’ve gathered, success stories, lessons learned, questions I should be asking, etc.

Thank you for your help.


Veteran Member

Date Joined Aug 2008
Total Posts : 5951
   Posted 4/24/2011 4:06 PM (GMT -6)   
     I don't have least not to my knowledge.  I was diagnosed with ulcerative proctitis in 1998.  After running the gamut of meds and becoming prednisone dependent, I had a total colectomy with end ileo.
     What I wanted to mention was that my GI doctor would not consider putting me on Remicade while still on 6MP.  He had me stop the 6MP at least two weeks prior to starting Remicade.  He said it was too risky.  I know a lot of people will disagree, but my GI doctor was always super cautious when it came to suppressing the immune system.  On the other hand, he did NOT want me to have surgery, just to keep trying new methods of treatment.  I had become prednisone dependent and had just about had it with all the meds and none of them working.
     Good luck to you.

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 4/24/2011 4:10 PM (GMT -6)   

Welcome to the list. I haven't been in the same situation as you, but I have some of the pieces arranged differently. My diagnosis has flipped back and forth from UC and Crohn's colitis; it's still not determined now. For a long while it looked more like CD, and I just had a permanent ileo two months ago, based on that info, but then the biopsies of my colon looked more like UC.

I did go on remicade about four years ago -- I had been talking to my doctor about possibly taking 6 MP, and then I got into a horrible flare, went in the hospital, the IV steroids didn't help, and it was either remicade or surgery. It all happened very fast, and I too was terrified of remicade, but I opted for it, and I was one of the people who responded immediately and well to it. Originally it was supposed to be a bridge to get me onto 6MP, but I had some issues with my liver function on 6MP and could never get up to a high enough dose, plus the research changed and my doc thought it was better to be on both.

I did reasonable well on remicade for about a year, but it didn't always work, and my doc upped both the dose and the frequency, until I ended up in the hospital again about a year and a half after my first hospitalization. This time, go figure, the IV steroids worked, and I stopped both 6MP and remicade and transitioned to humira, which didn't really ever work, and then cimzia which also didn't work. I started getting all kinds of crazy complications, and I took flagyl and cipro for a skin issue, and that actually helped my flare for a while, but I couldn't stand the side effects of the flagyl. I just got worse and worse, with a scary ten day hospitalization including a 104.6 temp, and then I decided on the surgery. I really wanted to be off these scary drugs..... when I had the high temp I was scared I was going to die.... cimzia has fatal infections listed as a side effect, and I thought a high fever might be how that would look....

Not sure how much of this is or isn't relevant to you, but the drugs and surgery aren't exactly either or. Your doc says if you had surgery, you might still need the drugs.... but on the other hand, if you take the drugs, you may still need more surgery, like I did. If the remicade helps your small bowel symptoms, it will likely help your pouch symptoms too, as it suppresses a factor involved in all the inflammation. It does sound like big guns for "mild/moderate" inflammation, but I did meet many people at the infusion site who were doing great on remicade for years.

Also, it doesn't sound like your j pouch has ever worked that well for you, can see why you'd want to get rid of it. A permanent ileo is not that big a deal if you've been sick a long time, as lots of people on this list can attest.

It is a lot harder to heal from the surgery if you've been on a lot of pred. I was feeling the best I had in a few years before my surgery due to pred (and not working).... but I am healing more slowly. My docs were very clear that it was not a long term option.

My main questions would be 1) Is your doctor an IBD specialist at a teaching hospital and 2) Have you had a second opinion from such a specialist? Makes a huge difference....

You're in a hard situation..... hope things get better/clearer.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Veteran Member

Date Joined Feb 2010
Total Posts : 720
   Posted 4/24/2011 9:06 PM (GMT -6)   
My situation is not exactly like yours, but I did get to the surgery or Remicade point during a severe flare up of UC last September. My GIs really wanted me to go Remicade, but I hated the thought of reducing my body's defense against illness and disease by taking that drug for the rest of my life. I wanted surgery. However, I was really sick and the doctors stressed that the operation probably would go better if I had it later when I healed up a bit. So, I agreed to 3 infusions of Remicade to get out of the hospital and heal up for surgery. I think my doctors were secretly hoping I would love Remicade and decide not to get surgery:) Remicade worked like a charm at first, but a week later I had a horrible delayed reaction to it with excruciating joint pain. I was taken off of it, and that left surgery as my only option.

You could certainly try the Remicade to see what happens. It might work wonders for you, it might not even work, or it might give you a bad reaction that makes it impossible to take anyway. However, don't feel like you have to try every medication if you aren't comfortable with the risks. Doctors seem to make you feel like you do. I don't know about taking both those drugs together. My GIs advised against that unless absolutely necessary, as it increases the risks of Lymphoma.

I sometimes worry that my UC could really end up being Crohn's, even though every test has pointed to UC. There are never any guarantees with IBD. Now that I know how horrible Remicade is for me, I am not sure what I would do. I try not to think about it and just take it day by day. I just know that for now, my permanent ileostomy has made me feel so healthy again.

This is a hard decision... hopefully some folks with permanent ileostomies and Crohn's will chime in.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

New Member

Date Joined Apr 2011
Total Posts : 5
   Posted 5/1/2011 10:38 PM (GMT -6)   

Thank you for your replies!  It is so helpful to hear from people who have related experience.  As well-intentioned as my GI is, there are many times when what I really need is to hear from people who are actually living with the illness and who understand the issues. 

I appreciate the time you took to reply to my post and the suggestions you made.  This is a wonderful community. 

With gratitude,


Post Edited (LMC) : 5/1/2011 10:46:54 PM (GMT-6)

Regular Member

Date Joined Feb 2008
Total Posts : 314
   Posted 5/1/2011 11:04 PM (GMT -6)   
I have crohns disease and a permamenent illiostomy. Ive tried remicade, 6mp, humira, methotrexate, prednisone and asacol and pentasa and all that stuff.

I can tell you right now that permemenent means permamenent. To be honest with you a lot of Gi's these days are immediatly going to what your calling big guns like remicade and 6mp and imuran and humira and methotrexate and the like. Treat it strong from the beginning being the idea. You say the side effects scare you but I dont see why the thought of an illiostomy the rest of your life does not scare. The side effects of the immunosuppresents are few and far between. And the more severe side effects are very extremely rare. by the way Ive had my illiostomy for 6 years and Ive had 3 major surgeries since then, including removing my rectum to make it permemenent, and removing part of my terminal illieum because of 3 porforations, and more terminal illieum because of disease. Not to mention I had Crohns Colitis to begin with so Ive had about 30 rectal abcesses and I still continue to get them after the illiostomy.

In my opinion you should try the other drugs first and theres no reason not to. And If I were you and were scared of side effects Id try remicade first, you'd probably have the most luck and you'd only need it once every 8 weeks most likely, instead of injecting yourself weekly or bi-weekly.

Good lucky in your decision and I hope you make the correct one. Done rush into something that forever before trying something else thats so main stream. It might mean your on immunosuppresents the rest of your life, but I have been for years and Ive never gotten any infections or viruses any quicker or more freqeunt then prior to the medications...and its helped a lot, for me methotrexate has been the single longest working drug for me.

Good luck.

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 5/2/2011 4:46 AM (GMT -6)   
I've never been in your exact position, but I understand what you're going through.

I originally thought I had UC but then found out I had CD. I've been on Remicade (saved my life, seriously, and then I became immune to it after about a year). I never had any negative side effects. I've been on 6mp, but it gave me kidney stones.

Now I have my ostomy, and yes it is permanent, but I am happy with my decision. I was MISERABLE before: 60 mg of pred couldn't touch my 20+ times of diarrhea a day. If you have constant pouchitis I'm guessing you have diarrhea often as well. No thanks. If you've already had a temp ileo, you at least know what you're getting into with an ostomy. That's really your choice.

That said, if you have Crohn's in your small intestine then obviously you'd probably need drugs along with your ileo. BUT, the good news is you probably won't need a very high dose along with the ileo.

Ultimately this is your decision, but those are my thoughts. I hope whatever you choose, you can feel better soon!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 5/2/2011 6:09 AM (GMT -6)   
I had an ileo after steroids stopped working and at that time there wasn't many other drug options, this was 19 years ago. I had never regretted it and even though it was done as a temp loop ileo within 3 days I told surgeon I didn't want it reversed. Good job it turns out as he then told me that colon was so badly damaged it would be bad idea to reconnect but felt I had to make that decision.

I also take azathioprine (similar to 6MP) as still had flares in ileum and have been taking that for 16 years but have managed long peroids of many years in remission. I stopped it last year on advice form my GI as had been in remission for 6 years and said good idea to see if could manage without it. Well got to 8 months then flared again very badly, worst one I have ever had so back on azathioprine and also humira. I will continue with the azathioprine for life and stop the humira after 12 months. I am now back in remission.

So an ileo for CD isn't a cure and you can still flare but it is more managable and one thing is even when I flare I don't get the pain I used to before the surgery or the having to rush to the bathroom. Life is so much better.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Forum Moderator

Date Joined Feb 2006
Total Posts : 5698
   Posted 5/2/2011 7:23 AM (GMT -6)   
Sadly many of those with chronic pouchitis are discovering that they have Crohn's. Some keep their jpouches and modify their diet and take medication as they don't want to lose their jpouch. Others choose to end the cycle and get a permanent ostomy. It's really your choice, not your GIs, to choose which scenario you feel is best for you. If surgery is what you feel would be in your best interest for a better quality of life, go for it!


Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 5/2/2011 8:01 AM (GMT -6)   
It is such a personal choice and decision. Fortunately you have a lot of information and experience to sift through here and the j-pouch forums to help you make up your mind and what is right for you.

My only advice is most people want to try every option available before deciding on a permanent solution so in your mind you know you tried everything possible so you will have no regrets later.

My husband's case is not like yours...had UC and hoped for j-pouch surgery but not meant to be. After his entire colon was removed it was determined no Chrons and no cancer. He is adjusting well but of course it is a major lifestyle change nevertheless. But in our minds there is just too much to be thankful for and we really try not to dwell on any negatives.

Good Luck with your decision.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 5/2/2011 6:41 PM (GMT -6)   
My original diagnosis was Crohn's, so I do not have first hand knowledge on j-pouches, but I agree with suebear that it is your choice. If you are not comfortable with your GI's urging to go to the Biologics you may want a second opinion.

Medication may still be in your future, it's hard to say, but it sounds like the first issue is dealing with a pouch that isn't functioning properly.

Good luck with your decision!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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