removing colon

What's the difference between colectomy and J-pouch?

jared16 said...
What's the difference between colectomy and J-pouch?

colectomy is just simply the term for the removal of the colon. The j pouch is the restorative procedure that is done so you don't have to have a permanent ostomy. The formal name for it is ileoanal anastomosis. If you google it you'll get diagrams and a full explanation.

iPoop-

Is it possible to have just colectomy (keeping rectum) in UC patients.

Marianne-

Thank you!

Can you try biologics first? They put me into remission when nothing else would. Now uc symptom-free.

It looks like I'll have my surgery at some point next week. I've struggled with UC for the last three years (since diagnosis). I've been 'able' to keep on struggling because I am an academic - there are a few hours in the week where I absolutely have to be somewhere (teaching classes, chairing meetings) but for most of the week I'm working on my own in my office. If I have to run to the toilet a lot during the average working day, few people are going to notice (though it's a hassle and embarrassing if I have a supervision with a student and have to use the toilet a few times during the meeting). If I had a job where I couldn't afford to make multiple urgent toilet trips each day, I wouldn't have been able to carry on in my job. But as it stands, I'm surviving rather than flourishing in a job I love and want to excel in.

I've also struggled through family life since diagnosis (I have four young children), feeling really limited in how active a father and husband I can be due to the fatigue, symptoms, and need to stay close to toilet facilities. It is massively limiting in our family activities, and it puts a lot of pressure on my wife.

In short, I've been able to carry on in my work and family, but I have reached the point where this isn't the life I want. Given the choice, I would prefer surgery rather than the option of struggling on like this through these years (when my children are growing up, and where my career is in a crucial stage). Surgery will mean a new 'normal' for me, but I hope it'll be a massive improvement on how things are now.

It sounds like you have a severe case of uc, and biologics might just help you. I understand that some of the blackbox side effects are scary, I was taken aback as well. But putting the risk into perspective helped me personally. Before biologics, I was having extreme urgency a number of accidents a month, pooping in the woods during drives, and more close calls than I can count. I did a full year on prednisone, which sucked. I was prednisone-dependent at 20 mgs. Now I'm in histological remission with one normal, non-urgent bm a day thanks to remicade.

I've not experienced a side effect with biologics, been on them for multiple years. All I've found is remission. The odds of side effects are statistically rare for biologics. Less than one percent of patients have the worst of them, and 60+ percent have an improvement in their uc symptoms. The Crohn's and Colitis Foundation of America has some great risk versus benefits information that's well worth the read:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Cortenemas (or any corticosteroid) are far riskier when used long term than anything else prescribed for uc. Corticosteroids at any dose in any form have risks of temporary side effects as well as irreversible side effects when taken longterm. Biologics are a whole lot safer.

notsosicklygirl said...
For me, I never had a good response to medication, everything I tried either had no effect or it made me sicker in some way. I wasn't a good candidate for anything. I guess if i were managing 100% perfectly on some treatment, even if it was costing my insurance 20k a month, and it caused me to have to go to the doctor every other month, and get needle pricks every month, and I had to worry about the future impact of the med and the future impact of the UC on my life, I would have tolerated all of that in hopes that things remained in a decent shape. That's just what you do. You think your colon is HUGELY important to daily function. Now I see that it really wasn't.

This really resonated with me. I had surgery over 20 years ago and often consider how different my life might've been if I'd come of age in the Remicade era. Had steroids and old-school DMARDs kept my disease in check for just a few years longer, I would've had a lot more treatment options at my disposal. Yet I'm glad things happened the way they did, as strange as that might sound to some, because I've lived a freer life in many ways as a result.

That isn't to say everything came up roses, because it didn't. Surgery was not a cure, merely a treatment, and I still have some intestinal problems. But it was, in my case, a largely effective treatment that has allowed me a freedom from worrying about whether my life was about to be disrupted by more medication failures, hospitalizations or blood transfusions. I've developed other autoimmune diseases and not having to fear what fresh hell is brewing in my colon allows me to focus more on other aspects of my health.

If you have a very physical job, 3timechamp, and are considering surgery, you will want to have a long discussion with a surgeon about post-surgery physical restrictions (particularly involving heavy lifting) and how long they might last.

Reason i don't want to go with humira remicade etc is bc of no spleen and my low immune system.Glenn Frye dieing woke me up ,I've had pnuemonia few times in last 10 years,it can kill people with colitis.not sure what best road to take is.Colonoscopy June 13 should let me know where disease is at