Imuran

I need some sound advice. It's been awhile since I've been on this board.

History:
Dx with Crohn's Colitis November 2005. I was placed on Rowasa Enemas and Entocort and later switched to Colazal and Prednisone and Rowasa and Steroid enemas. Had fistulalizing Crohn's and deteriorated rapidly. Started Remicade in February 2006. Achieved remission on Remicade for 2.5 years. Post pregnancy crashed. Doubled doses and shortened frequency. Nothing. Tried a clinical trial (Aisle 9 - working name) in Fall/Winter 2008-2009. Failed. Tried Humira. Had a reaction (spiked a 104 fever after each of the first two initial doses and ended up in ER). Doctors stated I can't have Cimzia because its it's sister drug. Refused Tysabri (hopefully most understand why). Decided to just operate. Removed approx 18 inches of Sigmoid. Left with Descending Colon Colostomy for last 4 years. Fast forward. about a year and a half ago. Developed an abscess outside my Stoma site (right next to my wafer). After fighting to heal it for a year, had a diverting ileostomy surgery to let the site heal. Suddenly got very ill 3 months post op. I did undergo extensive testing before the diverting ileo loop to ensure I was in remission. Well turns out. It must of been manifesting without any clue. I had been on asacol the entire time post op too. My GI did an emergency scope a few weeks back. Over half my remaining colon is infected again (7/8 out of 10 in severity). The drug I'm left with now is simphoni. I don't respond to steroids. They are merely a bridge to calm me down and get me to something stronger. He has recommended a total colectomy at this point purely because they have never ever ever found ANY disease even remotely near my small intestines and they have checked and checked and checked! (They are thinking it's the ticket to long term health)

So, I'm not against the colectomy. I don't mind living with a bag. I hate the ileo and would prefer a colostomy but I would rather have my health to be perfectly honest. However the bigger question is he is giving me the option to take Imuran long term or not. I'm nervous about t given it is listed on the list of carcinogens. I have injected so much into my body in the last 4 years. I'm only 31. How much more can my body take? Is it worth the risk? I'm trying to weigh the fact that they remove my colon and the disease goes away (hopefully) for good because its never been in my small intestines then why would I need imuran. However, for the small chance it would return imuran could stop it. If it does return we'd have to pull the biologics back onto the table. But I'm at a loss and have to make a decision by tomorrow.

Any thoughts?

I've already some the TMPT metabolic test. So it's a matter if I want to take it or not and he's giving me the option. But placing a known carcinogen into my body is frightening to me. And the fact remains that the disease has never once shown in my small intestines so is it really necessary to take a maintenance drug? I don't know the answers. No one seems too. But I am looking for any and all incite. In the past 8 years I have put so much into my system from all these biologics I am just simply unsure. And imuran is no small deal.

And I am. Which is why I'm struggling badly with the concept. I'm obviously looking more long term now with my health as opposed to when I was originally diagnosed and it was more immediate.

I have most likely built antibodies to Remicade based on my history. He's willing to do the test but given they doubled the dose and increased frequency and I still failed. It's pretty obvious it's done. And reissuing the drug could cause a serious reaction. It's not worth the risk. I'm basically left with these options:

No surgery & Simphoni
No surgery & Tysabri - refusing
Surgery (total colectomy) & Imuran long term
Surgery & no meds - if it comes back we put simphoni, Tysabri and whatever new that may come out back on the drawing table. It could come back on imuran as well there are no guarantees.

I totally support your decision to have the colectomy. I think that will solve a lot of problems and it's great that your attitude is so positive on this.

I dunno why Imuran is listed as a carcinogenic, but I would guess that you would have to take a dose many times higher than that given to Crohn's patients to get any significant carcinogenic effect from it. It's an old drug, been around for decades, if it gave loads of people cancer it would be known about by now. Plenty of studies have been done on azathioprine (Imuran) and the associated lymphoma risks as well, which can be found by googling. One of them is a 2011 Dutch study, where out of 17,834 IBD patients, 44 lymphomas were observed. Bear in mind, having severe IBD itself probably partly contributes to the increased risk of getting lymphoma.

I had an ileostomy created in Feb 2013, entire colon and terminal ileum was diseased, failed all meds. Not on any meds now, not because I'm scared of cancer, but because they didn't work before surgery and just made things worse. The Crohn's will come back or it will not come back, it boils down to that. Some people go into remission for 20 years, or have lifelong mild disease, without being on strong meds (or even any meds) or following special diets. Other people do everything under the sun (more than me and I tried a lot) and they still have severe, unrelenting disease.

7 months after surgery and I'm still Crohn's-free as far as I know. Hope I remain Crohn's free for basically the rest of my life, but I have a long, long way to go.

Transplant patients take azathioprine at about 2x higher the dose that Crohn's patients do. I don't know the cancer outcomes for transplant patients, but they are usually on a battery of immunesupressing drugs, not just azathioprine.

An increase of a small risk does not make it a massive risk, even if you double it, quadruple it or multiply it by 30x. There is apparently a slide somewhere on the internet of 10,000 dots - one of those dots is coloured red to indicate how many healthy people out of 10,000 will get lymphoma. Two of them are coloured red to indicate how many people on Remicade out of 10,000 will get lymphoma.

Perhaps you might get 3 or 4 red dots for azathioprine or azathioprine + Remicade. I might get lymphoma, on the other hand I might get one of the far more statistically common cancers.

Yes, I have my rectum. Intend on keeping it, because I may be able to have a reversal in the future by connecting the ileum to it.

I was taking Imuran for 8 years alongside Remicade. It gave me 8 years of remission, my problem was the Remicade stopped working so I stopped both these drugs and opted for Tysabri. My problems with long term Imuran was constant joint pain and bad back pain, dry mouth, tiredness. However when I came off it, I felt a hundred times better. No pains. I was worried about the side effects but it seems they come with most of the meds for Crohn's. Good luck.

Thank you...

However, I'm sorry about your twin. I didn't know what cloaca was, so I looked it up. Nature is cruel sometimes :/

I've never been pregnant, but I believe it's methotrexate which is the drug that isn't safe or recommended to take during a pregnancy. Imuran seems to be regarded as being safe (study here), but in this instance I think being nervous is understandable. This might be worth making a separate topic about, because there are mothers here who might be able to give better advice than I can about taking medication during pregnancy. The only thing I am sure of is that it is better to get into remission first, if you can.

Your Crohn's is a bit unusual in that it's following a UC pattern of progression (starting in the rectum, then going up the descending colon). UC never goes beyond the colon and most of the time Crohn's colitis doesn't either. Crohn's rarely attacks the whole of the GI tract with equal ferocity, so there are patients who have lost nearly all of their small bowel and require TPN, but still have kept their colon or enough of it to not need an ileostomy. Likewise, most Crohn's colitis patients who lost their colon don't end up with the disease attacking all of their small intestine. (If it comes back at all, it's likely to be localised, at the site of the stoma.) Needless to say, there are exceptions, but they are rare.

So yeah, long story short, I think getting a colectomy is a good idea. Segmental colon resections aren't done very often, usually because the Crohn's does end up spreading and the patient ends up needing a colectomy anyway.

Post Edited (NiceCupOfTea) : 9/17/2013 8:59:13 AM (GMT-6)