Long term Imuran Vs Surgery

You might find some good information in this article...

https://academic.oup.com/aje/article/177/11/1296/96094/Use-of-Azathioprine-and-the-Risk-of-Cancer-in

I'd take my chances with lymphoma over IBD.

No-brainer for me. I'd stay on the azathioprine.

NiceCupOfTea said...
I'd take my chances with lymphoma over IBD.

No-brainer for me. I'd stay on the azathioprine.

Same here.

I would imagine the chances are still quite low, but i am not sure. Of course make decisions based on research and on your doctor's direction.

That said, I had surgery because i was no longer responding to medication. I wouldn't have opted for surgery if drugs had worked, and while I didn't want surgery, I am extremely thankful to no longer have IBD or IBD drugs in my life.

The surgery that i will be discussing with my surgeon is the one where they remove the colon but keep in the rectum and connect the small instentine to it and use mesalasine suppositories to maintain reduced inflammation. Have any of you had this operation before?

40% increase though...
Of a cancer which isn't curable... I'm leaning towards surgery myself

Lukeuk said...
The surgery that i will be discussing with my surgeon is the one where they remove the colon but keep in the rectum and connect the small instentine to it and use mesalasine suppositories to maintain reduced inflammation. Have any of you had this operation before?

Removing the colon but leaving the rectum is a subtotal colectomy. A J Pouch is a total proctocolectomy and ileal pouch anal anastomosis. Just curious, being that you have UC, why leave your rectum? A J Pouch will leave about 2 - 3cm of a "rectal cuff" to attach the small intestine to and to help with bowel control. Even with that small of a cuff, UC can still attack it. I have a J Pouch, I had mine done back in 2015

blksteeda said...

Lukeuk said...
The surgery that i will be discussing with my surgeon is the one where they remove the colon but keep in the rectum and connect the small instentine to it and use mesalasine suppositories to maintain reduced inflammation. Have any of you had this operation before?

Removing the colon but leaving the rectum is a subtotal colectomy. A J Pouch is a total proctocolectomy and ileal pouch anal anastomosis. Just curious, being that you have UC, why leave your rectum? A J Pouch will leave about 2 - 3cm of a "rectal cuff" to attach the small intestine to and to help with bowel control. Even with that small of a cuff, UC can still attack it. I have a J Pouch, I had mine done back in 2015

Woah, I just saw this!

Do not even consider that option for UC - your doctors are crazy! An ileorectal anastomosis isn't usually performed for UC, for the good reason that UC occurs in the rectum 99.9% of the time. And there is no guarantee that you'll be able to get it under control when it does. Particularly as I'm guessing meslazine didn't work the first time around, hence your being put on azathioprine.

I have the same operation, as it so happens, but my circumstances are different - I had Crohn's for a start and it spared the rectum, or at least it used to. It doesn't anymore. I'm on 6MP (the sister med to azathoprine) and Entyvio and have no prospect of getting off meds. And I'm not even in remission. I go 8-10x a day, I have butt burn and anal itchiness from hell (because of bile diarrhoea), and my diet is more limited than it used to be because excessive fibre and a few other things cause abdominal pain.

I don't even have a complicated case of Crohn's - I don't have abscesses or fistulas. And it still causes me misery. I had an ileostomy for 2 years and in all honesty I had a better quality of life with the stoma. But I can't face more major surgery and another long adjustment period while my bowels get used to the new set-up once again, so I'm sticking with what I've got for now and changing to a new biologic.

If you do have surgery, consider a j-pouch or a permanent ileostomy but do not consider an ileorectal anastomosis. I think you would sorely regret it if you had one.

NiceCupOfTea said...

blksteeda said...

Lukeuk said...
The surgery that i will be discussing with my surgeon is the one where they remove the colon but keep in the rectum and connect the small instentine to it and use mesalasine suppositories to maintain reduced inflammation. Have any of you had this operation before?

Removing the colon but leaving the rectum is a subtotal colectomy. A J Pouch is a total proctocolectomy and ileal pouch anal anastomosis. Just curious, being that you have UC, why leave your rectum? A J Pouch will leave about 2 - 3cm of a "rectal cuff" to attach the small intestine to and to help with bowel control. Even with that small of a cuff, UC can still attack it. I have a J Pouch, I had mine done back in 2015

Woah, I just saw this!

Do not even consider that option for UC - your doctors are crazy! An ileorectal anastomosis isn't usually performed for UC, for the good reason that UC occurs in the rectum 99.9% of the time. And there is no guarantee that you'll be able to get it under control when it does. Particularly as I'm guessing meslazine didn't work the first time around, hence your being put on azathioprine.

I have the same operation, as it so happens, but my circumstances are different - I had Crohn's for a start and it spared the rectum, or at least it used to. It doesn't anymore. I'm on 6MP (the sister med to azathoprine) and Entyvio and have no prospect of getting off meds. And I'm not even in remission. I go 8-10x a day, I have butt burn and anal itchiness from hell (because of bile diarrhoea), and my diet is more limited than it used to be because excessive fibre and a few other things cause abdominal pain.

I don't even have a complicated case of Crohn's - I don't have abscesses or fistulas. And it still causes me misery. I had an ileostomy for 2 years and in all honesty I had a better quality of life with the stoma. But I can't face more major surgery and another long adjustment period while my bowels get used to the new set-up once again, so I'm sticking with what I've got for now and changing to a new biologic.

If you do have surgery, consider a j-pouch or a permanent ileostomy but do not consider an ileorectal anastomosis. I think you would sorely regret it if you had one.

Okay so this is a really sensitive subject for myself and all people on here that have an ostomy.
The reason my Dr is considering this is because I have asked them to. They have not suggested it.
I'll be totally open and honest about this as it's been my biggest fear from day one of being diagnosed and when I say what I'm about to i want no one here to take it personally as this is something that only applies to me and is not something I think of anyone else.
The reason why this surgery is being considered is because I'm not mentally stable enough due to past mental health issues to deal with a body image change like that. I know with reversals it's just 6 months but here in the UK surgeries often keep getting cancelled anyway. People that have had a collectomy through emergency or electing to do so I honestly hold my hat off to you. But personally that sort of change would send me into such a spiralling depression that id be a much bigger threat to myself than lymphoma or IBD is, let's put it that way. Just as a side note talking therapies and AD meds I've tried in the past and let's just say useless doesn't begin to describe it.

I have been taking 6mp for 3 plus years and no problems.

You need to put the odds of benefits and risks of immunomodulators into perspective. What's the odds imuran/6MP will improve your UC symptoms? about 70 percent. What's the odds you'll get a lymphoma from it?
The most concerning side effect of these medications is lymphoma which has odds of 4 in 10,000 (or 0.04 percent) compared to 2 in 10,000 (or 0.02 percent) for the general population. What happens to those who get it? 66 percent are put into a remission. So, you're talking very long odds. The benefit far out weighs the risk. It's nothing to loose sleep over. You have much greater odds of death via car crash.

The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

notsosicklygirl said...
I had surgery and while I have been fortunate in my quality of life after surgery, I would never have had surgery if I was doing fantastically well on a medication that can be used for the long-term. I would only have surgery if drugs didn't work, if I developed cancerous changes, or if I knew I was going to end up having surgery at some point down the line (but no one can ever know this). In those cases, there is no reason to wait until you're a worse candidate. The truth about surgery, is that many people suffer with a variety of issues afterwards. I say this because I see it here, but I personally have had very small issues since surgery. I haven't needed any drugs or follow up. Many people do need follow up, some permanently. The results are pretty individual. The follow-up can be for something as small as yeast, or as big as chronic inflammation in the pouch/rectum (but a person with UC should never keep their rectum and expect to treat it with enemas/suppositories). Chronic inflammation of the pouch can be simple, or it can be debilitating. With a jpouch, the best case scenario is going 4x a day, some people go upwards of 10x a day. Both situations are seen as "normal". The movements are not solid and packed like a healthy person. They are looser, noisy, sometimes acidic, some people deal with leaking... Not something you want to deal with if you respond to treatment. You definitely don't want to go through the surgery and end up keeping your diseased rectum. Please get opinions from other doctors. I think the information you're received about imuran is inaccurate or exaggerated. What NCoT said about the odds being higher but small is true, but she's right, if you're the one who gets the lymphoma, it doesn't matter how small the odds are.

Well this is the really hard part, no one (I.E the NHS or other governing bodies or official charities) can actually give me a solid fact about ratio numbers and I don't know why because the data is out there. What we need is like a mathematician to just say okay luke the ratio for a person not on Imuran is 1 in xxx and a person on azathiprine is one in xxx AND NO WHERE AFTER 3 DAYS OF FRANTICALLY SEARCHING CAN I FIND THIS.

Honestly it's sending me round the bend. How can anyone make a clear decision when the numbers aren't there.

If someone says 40% to me I basically think it's as good as flipping a coin with lymphoma being on one side and no lymphoma being on the other. And to me that is just not good enough odds.

The only solid research I have found is the following that there is a 40% increase in lymphoma on Aza and in the UK following cancer research's data that says 1 in 48 people not on AZA get NHL so being on Aza factoring in that statistic is 1 in 28.8

Bearing in mind that is just NHL

Risks of HL is 1 in 370 so with Aza it's 1 in 222 (which is more comforting.


My information is from the statistics on camcer research and a study that someone kindly posted here early showing that the percentage increase was thought to be of at least 40%

Honestly, 1 in 29 scares me.

Uniform Charlie said...
I hate this disease for the difficult choices it forces people to make. The uncertainty is so draining. I completely agree with NCOT. A 40% increase of a very small number isn't much to lose sleep over. Of course, I have no skin in the game so take my opinion for what it's worth.

If someone told me they could cure my UC but it would increase my chances of getting struck by lightning by 100% I'd take my chances with the lightning.

Wow I empathise with this post so much.
This sums my feelings up 100%.
The biggest disease of UC is uncertainty, it ruins pretty much everything.
When you're planning a holiday you can't look forward to it because you're thinking - colitis flare.
When you're thinking about making a family you're thinking - cancer.
24/7 your brain overthinks and drains.

Wow, that is a tough decision.

For me, I have resisted any discussion of surgery with my GI. I have failed 1 biologic and while Entyvio has shown promise, it hasnt put me in remission yet.

The surgery just feels so final, even if all goes well. I have already lost about a year of my mid-20s because of this flare. my understanding of the surgery is that it takes months inbetween parts 1 and 2 of the surgery and months after part 2 to actually feel normal and get your life back. that's a long time for someone like me that has already sacrificed a year of my youth.

and that is just best case where everything goes right. there are plenty of problems that can result from this surgery, most of which make me question the risk of doing it. if the surgery route is best for you, make sure you evaluate the risks that come along with it and how they could adversely impact your life.

like someone said, yes the medicine raises your risk, but your risk is still low of getting it. if you have found a medicine that works and has been effective for this long, i'd stay on it and ride it out. you have been blessed with a long term treatment option. i wouldnt throw it away just because you're at risk for something that you may never get.

just my two cents, best of luck to you.