Ulcerative Colitis Partial Snip Not Full Snip?
February 15, 2015 4:48 AM   Subscribe

Someone I'm close to with Ulcerative Colitis is not finding medication is not providing them with a good quality of life and is thus a candidate for a colon removal. Their regular gastro suggested that rather than the proctocolonectomy that's standard, they have a reasonable chance to keep their rectum. Odds this is accurate?

The person with UC deeply does not want a colostomy bag and is not particularly happy about j-pouch surgery as a compromise- the possibility of maintaining anything close to normal bowel function would make a huge difference to them. However all the medical literature I can find treat the full extraction of the entire lower bowel as standard and makes no mention about partial snipping.

They will have an initial consultation with a specialist surgeon at the start of next month, however this entire thing is causing them extreme psychological distress. They find reading too much medical information on their own makes them miserable -so I am trying to become more educated on the subject so I can be reassuring without being inaccurate..

In their particular case, apparently their rectum has never experienced inflammation that they are aware of. However, even on various immune and inflammation suppressing drugs and steroids, they have never experienced anything approaching normal, and are living in a cycle of pain; occasional incontinence; unpleasant side effects; chronic dehydration with connected migraines; and recently scary inability to have enough blood leading to an elevated heart rate and shortness of breath (and a half week in the hospital after losing a lot of blood following a biopsy in their routine annual colonoscopy). They are having to face the reality that not getting cut could kill them.

For the patient, it's made more distressing because their prostate is a major part of their enjoyment of sex, so side effects of a full snip is not just embarrassing for them and laced with body horror, but also taking away access to something they enjoy.

Their doctor appears to be competent and honest, albeit tactless to the point of it adding to the character of their bedside manner (post hospitalization for bleeding follow up "so I hear you bled like a stuck pig?" - the UC patient in question finds this more reassuring than "poor thing!")

So, is it more likely their doctor is correct that they will retain the internal storage thingee or are we talking full tubal re-route or tummy plumbing as an almost or complete certainty?
posted by Phalene to Health & Fitness (6 answers total) 2 users marked this as a favorite
Hi there, I have a j-pouch. I'm happy to talk to you or your friend privately if you'd like.

In short, partial resection for treatment of unremitting ulcerative colitis is almost never performed. The nature of the disease is that once the affected segment of colon is removed, the disease comes back elsewhere in the large intestine. There is significant and increasing risk associated with each abdominal surgery and each resection a patient undergoes, so very few surgeons are willing to get started on the conveyor belt of partial resections with a UC patient when the future is, unfortunately, so easy to predict.

It sounds like the "chance to keep their rectum" surgery that the gastroenterologist is referring to might be an ileorectal anastomosis, or IRA, where the colon is removed and the small intestine is attached directly to the rectum. Before the j-pouch became the standard of care this was performed more frequently for UC with less than stellar results. As with partial resection, the re-operation rate was quite high. The reason that the j-pouch became the standard of care is that it outperformed the IRA in terms of risk of re-operation as well as quality of life. Also, despite the appeal of hanging on to your original rectum instead of making a 'new one' (j-pouch), IRA bowel habits are not all that different from with a j-pouch -- I have personally never heard of an IRA patient who returned to 1 bowel movement per day.

Although the GI may think a partial resection or IRA is a possible surgical option, ultimately it is up to the surgeon, and very little can be assessed or decided until your friend meets with his surgeon. Even if every GI in the world agreed your friend should have a partial resection, it won't happen unless a surgeon agrees to perform the operation.

Finally, I think your friend needs to get a better, more complete understanding of his perception that his rectum has never experienced inflammation. Rectal sparing in UC (meaning ulcerative colitis without inflammation in the rectum) is uncommon and can be suggestive of a misdiagnosis. Any GI who hears "this patient has UC but no rectal inflammation ever" should perk up her ears and examine the situation further. I would not pursue surgery without investigating this -- the surgical options and the decision making calculus are different for a patient with Crohn's disease or indeterminant colitis than for someone with clear cut ulcerative colitis.

Best of luck. It will get better.
posted by telegraph at 5:55 AM on February 15, 2015 [8 favorites]

My little sister has a j-pouch, and my understanding of the situation is similar to telegraphs. Also, I know you said that your friend wasn't excited about the j-pouch because they want to maintain something closer to normal bowel function. I can tell you that while my sister doesn't have "normal bowel function" with her j-pouch, she DOES have a very normal life that her bowel function in no way gets in the way of. She comfortably can work 12 hour shifts as a nurse, travel to 3rd world countries and go on long car trips without any issue. None of that was really feasible with her UC before the j-pouch. Getting the surgery was a big decision for her, but it also was completely game-changing from a quality of life standpoint.
posted by mjcon at 9:55 AM on February 15, 2015 [3 favorites]

I've got a j-pouch (15 years on, not from UC though) and while the surgery and recovery was hard, I'm in almost perfect health and unless I tell people, nobody knows. I ran a half marathon last year, run three times a week, eat and drink whatever I like and regularly live in India for months at a time. I also had two children after the surgery.
Happy to reassure your friend that a j pouch is a wonderful, life giving, surgery. (Actually two, but you know what I mean.)
posted by taff at 11:52 AM on February 15, 2015 [2 favorites]

Oh I should add that I've read that bum sex is not possible after j pouch surgery. It's not something that interests me, but I definitely remember reading about it.

I'm a woman but I have read stories of men with j pouches adjusting their sexual routines and remaining very happy. Good luck to your friend. Anything is scary when it's unknown.
posted by taff at 12:02 PM on February 15, 2015

My husband has the j pouch as well. Better than the Internet is getting a mentor to help through the process. my husband's ostomy nurse was a great resource after his first surgery. He got informal mentors and also acted as an informal mentor by staying in touch via phone with other patients he met during his hospitalizations. This has made a huge difference for him in terms of adjustment.

I would look for community support for the patient as he prepares for a surgical approach. you can Google for support groups or just call up medical supply shops and reach out to the ostomy nurse for referral. Good luck.
posted by crazycanuck at 2:08 PM on February 15, 2015 [2 favorites]

You guys were right, apparently it didn't occur to them to tell him it was a "diagnosis unclear!" chrons/UC.
posted by Phalene at 1:54 PM on March 12, 2015

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