Remicade+Imuran=?

You can stop taking medication; you can't reverse surgery. The vast majority of complications from medications are reversible; the same isn't true of surgery.

I was on azathioprine (Imuran) a couple of times, for a few months each time. No obvious side-effects at the time, it just didn't work. I was on Remicade for a year; once again, no obvious side-effects, it just didn't work. I don't regret trying them at all; my only regret is that I wasn't in a position to try Remicade a few years earlier, as I think it would have been more likely to work then. By the time I actually tried it I think it was too late: I'd been living with severe Crohn's colitis for years and my colon was a goner in all but name.

After Remicade I tried methotrexate and Humira but I don't think my GI had much hope and nor did I. Those were the last two meds I tried. After that I booked surgery. I was steroid-dependent - in fact steroids were the only thing keeping me from emergency surgery. Every time I tried to get off them, I would end up back in hospital and on IV steroids again. It was that steroid dependency more than anything else which made me finally bite the bullet and book surgery. I couldn't see any way of breaking the cycle and steroids are far too dangerous to use continuously for years.

I had my first surgery in Feburary 2013. Had a colectomy with end ileostomy. The Crohn's made me ineligible for a j-pouch and I had my end ileo for about two and a half years. In July 2016 I had a reversal; the surgeon had kept my original rectum and connected my small bowel to that. I was theoretically a good candidate, Crohn's tending to have spared my rectum in the past. But all hell broke loose after the operation and it's been 7 months of misery ever since then.

I dunno where you are at with your UC, but if it's mild or moderate forget about surgery. It's not the panacea for all ills that some people would like it to be; it just isn't. There's all the success stories and then there's all the... other stories. The narrative is that the success stories are too busy living living their lives to post, even though on this site at least they post far more prolifically than the non-success stories. (Me being the major exception to the rule.)

I'm not trying to scare anyone away from surgery who really needs it. For most people the outcomes are good or even excellent. But there are far too many complications for surgery to seriously be used as a first line treatment: it's always going to be a last line treatment until that changes.

PS: Also, with the growing awareness of the importance of the gut microbiome to our health, I am surprised that colectomy doesn't have appear to have any major health implications beyond increased risk of dehydration. On the other hand, it's not like people without colons are a massively studied population - maybe there are effects we don't know about yet.

Post Edited (NiceCupOfTea) : 2/12/2016 8:29:38 PM (GMT-7)

NCOT and Silent Lucidity-Your experience and thoughts are helping me to see the other side before I get there.
Thank you.

I tried Remicade with MTX. I also used 6mp prior without a biologic. Unfortunately, it stopped working for me... As for Remicade, I was a primary non-responder so I never had any response. Same goes for Simponi and Entyvio. I had surgery and I am so thankful I did. Though I agree with what NCOT said, surgery is VERY final, in cases like mine, there were no options. It was have surgery or live a life that is ruled by a toilet bowl, pain, anemia... It was emotionally and physically draining living like that for so many years. I had my reconnection surgery about 3 months ago and I am worlds better than I expected I would be. Worlds better than I was with UC, worlds better and free of drugs. I feel so liberated without the need for expensive doctors, treatments and impending flare ups looming. Now, if I had the option to try to save my colon, sure, I would take it, but I didn't have any options and the ones I tried didn't even work. I was over it. I am better off without the colon & without the drugs in my body. I feel so much better about the future.

They say the #1 predictor in a good outcome is a good surgeon.

notsosicklygirl and Eva Lou, thank you for sharing your experience and thoughts. Positive or negative it definitely helps me and I am sure will help others.

Minority is true, but it is important to be aware that about 30% of people with UC end up needing surgery. It's a pretty high number... Someone once said that even with the newer biologics that are available, the rate of collectomy hasn't decreased from 30%. I found that interesting.

I agree that the likelihood of awful side effects from the drugs is pretty low statistically. Sepsis is probably under a 1% chance. Cancer is even lower. That's never what worried me, what worried me was the long-term need for drugs to stay functional, and by functional I don't mean 100%, often times I see people saying they are experiencing all sorts of symptoms while on harsh medical treatments and crazy restricted diets, yet they consider themselves in remission.

Thank you for the article NCOT, I love to read.
However I like to say my opinion and hope you don't take it wrong.
Sometimes studies are like pre-election polls. For ex. in this study there is no mention of severity of those participants.
Did GI's pick and choose records of patients or they were random?
I hope I am wrong-GI's don't like negative reviews about biologics
simply because they don't have any other ammunition. I also believe they get good incentive but that beside the point.

I read many articles and believe following article represents true nature of UC treatment and it is latest one too.

http://journals.lww.com/ibdjournal/Fulltext/2015/01000/Surgical_Management_of_Ulcerative_Colitis_in_the.21.aspx

UCmas said...
Thank you for the article NCOT, I love to read.
However I like to say my opinion and hope you don't take it wrong.
Sometimes studies are like pre-election polls. For ex. in this study there is no mention of severity of those participants.
Did GI's pick and choose records of patients or they were random?
I hope I am wrong-GI's don't like negative reviews about biologics
simply because they don't have any other ammunition. I also believe they get good incentive but that beside the point.

I read many articles and believe following article represents true nature of UC treatment and it is latest one too.

http://journals.lww.com/ibdjournal/Fulltext/2015/01000/Surgical_Management_of_Ulcerative_Colitis_in_the.21.aspx

Well, it was just an abstract I posted - the full version isn't available. All I can tell you is that patients with UC who are on Infliximab almost by definition have severe disease.

Here's another, more detailed, article which points to the decreasing colectomy rate, at least in Europe. It analyses a wide range of studies and admits that "The lower colectomy rates in population-based studies might reflect the inclusion of more subjects with milder disease than in studies of selected patient populations." But it also says that "The risk of colectomy seems to be lower than reported in studies completed prior to 1990 ... The surgery rates at 10 years after diagnosis are between 4 and 10% in recent studies, and the colectomy rate for patients with severe UC who require hospitalisation has remained stable at 27%."

In other words, the 30% colectomy rate applies mainly to those with severe UC who are hospitalised, not to all UC patients.

austinpublishinggroup.com/gastroenterology/fulltext/ajg-v1-id1017.php

It might be different in America, I dunno.

I had to lol a bit when you said that "GIs don't like negative reviews about biologics". Surgeons probably don't like negative reviews about their livelihood either. It's no secret that GIs tend to be more conservative about surgery than surgeons. In the UK at least, there's no financial incentive for keeping a patient on expensive drugs indefinitely. Even in America, I doubt that most doctors get huge kickbacks. Most doctors are inherently conservative about treatment: the "do no harm" principle and all that. Or more long-windedly, "given an existing problem, it may be better not to do something, or even to do nothing, than to risk causing more harm than good."

In this context, there has been ample speculation about whether the use of biologicals would truly reduce the need for surgery or only delay the inevitable whereby increasing the risk of postoperative complications

It's only one opinion, and a subjective one at that, but my surgeon told me that she did less Crohn's surgeries than she used to. She put it down to the introduction of Infliximab. And indeed during my first infusion I met an 82-year-old woman with Crohn's colitis who'd been on it for 7 years. She reckoned it was the only thing which has worked. Now maybe she will still need surgery eventually, but in my opinion an extra 7 years of remission is well worth it.

Happiness scores were also high at 10/10 ten years after IPAA surgery

Can I sell anyone a bridge? This statistic is about as believable as those 99% votes tinpot dictators in third world countries get in 'democratic' elections. I literally don't know a single person in my life who is likely to rate their happiness at 10/10. Clearly I must live among really miserable people. Maybe they'd all be happier if they had j-pouches.

I was put on Imuran for maintenance as I was coming off pred - I instantly got a rash, so was changed to 6MP after just a few days. Unfortunately I developed pancreatitis very quickly from 6MP, within a week I'd say (I think in total I was on for 8-9 days). As mentioned below, once I came off the drug, it went away within a week and I had to be careful what I ate for about a month, but have had no lasting affects because it was caught quickly. I can't remember statistics, but before I started on the medication, my GI told me that a very very small percentage have an allergic reaction like that; I was just in the minority!
I was on Humira for I think 6-8 weeks. After the loading doses I had a blissful two weeks of as close to remission as I ever achieved and then it came back worse about a week after the second loading dose. So I was put on infliximab. Which basically didn't do anything - I'd a partial response for a few weeks again, but even after getting elevated doses (closer together) and double doses, I had to come off it. The side affects weren't worth it when I was still in a horrible flare. I was also on MTX for the entire time I was on Humira & infliximab.
I think that if you are in remission from the medication, then it completely worth taking them. That was my feeling going on infliximab, if it wasn't going to give me my life back (besides for a day every 8 weeks), I wasn't doing it any longer. Everyone would rather have a working colon, so if you can achieve it by taking medication, great!
I'm 14 months post-colectomy now, and have my life back. But you can't un-have surgery, so if it is a choice to have it, you need to be completely certain. I didn't have the choice to keep my colon, and I had no options left, so I'm grateful now that it's gone!

UCmas - to clarify, I had more medical options to choose from (I never tried Imuran, Simponi, Entyvio, Xeljanz, etc) but opted for surgery. I agree with your thought process as evidenced by my experience with the disease and am very happy with my decision. Best of luck.