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Being Recommended for Colon Removal (JPOUCH)

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Ulcerative Colitis
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Posted 9/30/2015 8:13 PM (GMT 0)
Hi,
Looking for help. I have recently gone through a colonoscopy and via the biposies have found signs of dysplasia. GI simply told me that under this condition he recommends that I remove my colon. My head is swirling but I am trying to understand what that means for me after having this procedure done. Has anyone had it done and if so, how have you coped? I am also trying to figure out how long it took to get the procedure scheduled for you.

45 years-Diagnosed with full UC in 2003. Have not had any severe episodes since I was first diagnosed where I was hospitalized.

Thanks
Posted 9/30/2015 8:48 PM (GMT 0)
Sorry that you're being faced with this. I found this article you might be interested in...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706746/


Also, if you haven't yet, you may want to check out the Ostomy board here at HW.
Posted 9/30/2015 9:58 PM (GMT 0)
Sorry as well:( ditto pb4....someone recently went through the procedure after findings of dysplasia. He's now on the ostomy forum. I'm sure some of our j-pouchers here will chime in.

All the best.
Posted 9/30/2015 10:22 PM (GMT 0)
Sorry about your situation. I had J pouch surgery not because of dysplasia, but because of uncontrollable severe pan colitis. The surgeries are tough to get through but the end result for me has been such a blessing. As far as the scheduling of the surgery, I was operated on two weeks from the time of my surgery consult.

If you have any specific questions I would be happy to try and answer them for you.
Posted 9/30/2015 11:02 PM (GMT 0)
I just had my colon removed Sept 22nd. Between the time I found out it should go, and my surgery date was 10 days. I believe that is fairly quick but I kind of liked that, it didn't give me too long to dwell on it, but just enough time to gather some information. I am having the j-pouch done in 3 steps, often it is done in just 2, depending on your surgeon and what medications you were on prior to surgery. I am just over one week post op and I already have my life back. I decided to go this route because of a stubborn flare, and exhausting all medications. Best of luck in your decision.
Posted 10/1/2015 1:25 AM (GMT 0)
Sorry to hear that they found dysplasia (precancerous tissue). Some mild cases of limited dysplasia can be monitored more regularly and you can live with it for a while. You can ask if that's possible for you (it may or may not be). Often, dysplasia means removal of the large intestine. It depends on how much and how far along it is.

The j-pouch is the standard go to surgery for uc patients. They construct a pouch out of the end of the small intestine and attach it to the rectal cuff on your anus in 2 or 3 surgeries depending on patient health and whether your currently on corticosteroids (like prednisone, better if not on them). You maintain standard bowel control and poop. The other option is an end ileo, which gives you a stoma and colostomy bag.

Do your homework, get a surgery consultation to ask questions and answers about your concerns. Visit the ostomies forum on healing well and ask about the surgery, recover from those who've undergone it. Visit jpouch.org. When I was flaring badly, I found this blog to be helpful ronnielee-fightingforit.blogspot.com/2012/08/coming-to-terms.html, a former healing well poster who blogged through her jpouch surgery and recovery.

Notsosicklygirl (a uc moderator on healingwell) is undergoing step 2 of 3 of the surgery soon. She's a great resource. There are a few others here as well recently done with, or undergoing it.

Good luck,
Posted 10/1/2015 3:00 AM (GMT 0)
I recently went through step 1 and step 2 of jpouch, and I am not going to lie to you, it's difficult. Each step has wiped me out... In my case, it has ended up being a good decision. I was in an 18 month flare up that wouldn't subside. I am thankful to be done with it. As for your case, I am sorry you're dealing with dysplasia. I am surprised he recommended surgery if it's just early signs but i don't know the details... I think the most important thing is to research surgeons and find one who has a lot of experience with jpouches - my surgeon specializes in jpouches. You're going to have a stoma for a while regardless, the ostomy forum here has been a invaluable resource for me. I actually did really well with my end ileo but the loop is much more difficult - on the positive side, it's only 8 weeks until it's gone! It took me about 4 weeks to get in for surgery from the day of my consultation. It was a tough 4 weeks because I was flaring and I knew I was doing this, I just wanted to be done with it all. Coping is hard. There were a few days when I knew surgery was my only hope where I cried endlessly for my colon. I think it's normal to be scared. One thing that keeps me positive is knowing that my experience with the end ileo was good. It reminds me that if that were where I ended up, it was a heck of a lot easier than life with UC. In your case, I doubt that's a concern. :) Good luck.
Posted 10/1/2015 7:04 PM (GMT 0)
I went through the first of two jpouch surgeries a month ago. The surgery involved a proctocolectomy, jpouch creation and formation of a temporary loop ileostomy.

Yes, the surgery was difficult but I'm glad I did it - I was tired of struggling with UC and failing all of the various medications. If I had been in your shoes and my GI found dysplasia, then I would undergo a colectomy without a doubt, even if my symptoms were under control. The purpose of the colon is to absorb water and store stool. People live full, happy lives without colons (either jpouch or perm ileos).

Although it took YEARS of living with UC (and just maturing in general) to come to this realization, but, in the scheme of things I don't see the point in desperately hanging on to a colon if the writing is on the wall (the UC is refractory or it's going to turn cancerous). I gave my colon the best chance possible with most of the best meds available, but keeping it just wasn't in the cards for me. Even though I'm only a month out, I am no longer on meds and capable of doing far more than I could if I was in the middle of a UC flare.

I completely agree with NSSG that finding an experienced colorectal surgeon is an absolute must.

Good luck!
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