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keeping the rectum or J-pouch; what would you choose?

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Ulcerative Colitis
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Posted 1/14/2013 9:18 PM (GMT 0)
I have ulcerative colitis, I'm a 31-year-old guy. And I need surgery for ulcerative colitis.
To say the truth, I already had colectomy, but nothing has been created at the time, as they weren't sure I had the u. colitis, or the crohn's; now that they appear to have concluded for the first, the natural course would be the j-pouch.

But, actually, I have some doubts. I have, in some extent, the reason to think that perhaps keeping the rectum would be the better choice for me.

The first reason is: if I keep the rectum, and make an IRA (ileorectal anastomosis), then, I would have the chance to switch it to IPAA (Total Proctocoloectomy with Ileal Pouch Anal Anastomosis) if in the future I need it. The opposite is not possible.

The second reason is: if I keep the rectum, and the rectum can be treated with medicines, above all, local suppositories and enemas, perhaps, I'll have less bathroom trips. There are studies where is showed that ira results are comparable, and women get the IRA to have more chance to be pregnant and make a family. IPAA is a bit risky also for men, IPAA is less risky. I believe that sexuality is easier having an IRA and not an IPAA.

The third reason is: I'm afraid to lose the rectum. This means that, if the j-pouch surgery goes bad, I have no choice than the ostomy.

Unfortunately, there are so many success stories with IPAA; while I can't find noone with ulcerative colitis who had IRA and is happy. Do you know anyone experience? Or your experience?

Thank you mates.
Posted 1/14/2013 9:35 PM (GMT 0)
I don't have any words of true wisdom. I have a j pouch and my rectum was removed. It's been smooth sailing for me so that's all I can really relate to you. I can tell you my sister and my uncle also went the IPAA route too and they have had great success too with little issues. To be honest I'm not familiar with any other way since with UC the disease can always attack the rectum. In fact my rectum was a mess.
Posted 1/14/2013 9:52 PM (GMT 0)
Also my rectum is a mess, it was always inflamed (12 years of disease) but my doctor assured me, when they believed I had crohn's, that it can be topically cured, so, the same I think can be done if you keep it with UC, in fact, there are studies overthere which affirm that IRA can be a procedure of choice in UC.
Watch it: http://www.ncbi.nlm.nih.gov/pubmed/20013930
Posted 1/14/2013 10:28 PM (GMT 0)
Interesting. For me I am glad every bit of what can be effected is gone. The plus side to that is I am drug free. And I suppose the downside would be more bathroom visits. I go about 4 to 6x a day...usually when I have to pee anyway so it's not a big deal and it certainly doesn't interfere with my life. Some j pouchers have higher frequency though.
Posted 1/14/2013 10:46 PM (GMT 0)
it seems to be a question of luck. you have some doubts in choosing the right equipe and the right surgeon, but, if you have only a chance, you're never sure you choose a good professional. I trust mine as he is experienced and very self confident, but, you never know, there are lots of not so succesful stories overthere.
Posted 1/15/2013 12:22 AM (GMT 0)
Well in reality there are more positive outcomes than negative ones. It comes with its risks but its not the norm to suffer ongoing problems. Of course they occurr...it's a huge, complicated surgery. But if it boils down to quality of life, like it did for me, then those risks are worth taking. Of course I could have just stayed with the ileostomy but I saw how well my sister and my uncle have done with the jpouch so I knew I wanted to give it a try. My surgeon is very skilled and I was in good hands with him.

Best wishes with whatever you decide to do. :)
Posted 1/15/2013 12:57 AM (GMT 0)
I would go with J-Pouch. But that's just me.
Posted 1/15/2013 9:14 PM (GMT 0)
mmmh, ok
Posted 1/15/2013 9:33 PM (GMT 0)
Why keep an organ that will still be affected by UC? Why have 2 major surgeries? In my case, I had heavy rectal disease, very little colon disease. Had I been given the chance to keep the colon I would have turned it down. I was done being sick, done with meds, and wanted my life back. I've had my jpouch for 12 years and am very happy I made the decision to have surgery.

Sue
Posted 1/16/2013 4:22 PM (GMT 0)
: -)

Can't see the hour to be operated; I'm a bit anxious, can the surgery go as wrong as you'll have to have a permanent ostomy?
Posted 1/16/2013 4:30 PM (GMT 0)
Sure, anything can pop up and ruin the plan when it comes to any surgery. I have heard stories of people going in for j pouch surgery only to wake up learning they have a permanent ileostomy instead. This usually happens to people who do not enough small bowel to reach down and make the j pouch. But a surgeon wouldn't know that until they are inside. It happens but that is rare.

The question you have to ask yourself is: Are you that sick that the benefits will outweigh the risks? I know you are nervous (I was scared to death) but there are thousands of these procedures done all the time and they really do go off without a hitch.
Posted 1/16/2013 7:07 PM (GMT 0)
Yes my surgeon told me that, but, I didn't understand the risk.
If I still have my rectum (already done the colectomy), couldn't he "measure" the small bowel before? And avoid excising the rectum (making the IRA) if I can't do a j-pouch?
Moreover, I read there's a technique in which the surgeon would cut a particular vein in order to create the j-pouch, but that is difficult. But in that case, I'm wondering if each surgeons make it, or just a bunch of them.
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