Permanent Ileostomy? J-pouch? Kock-pouch? Which to choose??

     Oh wow, you really have a lot on your plate.  I did not have rectal cancer, but it was only a matter of time before it developed, I am sure.  I had ulcerative proctitis for twelve years and my GI doctor NEVER brought up the subject of surgery.   All he wanted to do was try more and more meds.  I found my surgeon online, believe it or not. By this time I was 63 yrs old with rapidly declining health...prednisone induced diabetes, uncontrollable high blood pressure, full blown osteoporosis on top of the UP.  I was not a candidate for j-pouch.  My surgeon said it would be tougher on my system than open heart surgery.  I told him I had no problem with wearing a bag, I just was soooo sick of being sick.  After the operation, my surgeon told me I had made the right decision because my rectum was badly diseased. 

     In your case, I want to put your mind at ease at having a "bag".  It is NO problem at all.  I did have a few post surgery blips, a hematoma inside the anus (my surgeon does not sew the anus closed because he feels there are more complications when that is done...every surgeon is different).  I also have had problems with dehydration, but that is mainly my own fault because I do not drink water as much as I should, but lately I've been doing better...lol.  I wear ALL the clothes I wore before having surgery.  Of course, I can't wear "skinny" jeans, but then, I'm a lot older than you.  I feel terrific!  I don't have diabetes anymore and my blood pressure is very well controlled with only 1 pill a day.

      You will get many more responces to your question, I am sure, but I just wanted to tell you having a bag is NO problem.  God bless and I wish you a full recovery.  I will keep you in my prayers.

First off sorry for all you have been through. I would research each option and talk to a surgeon about each option. Although I don't know how many surgeons perform the Kock pouch....they may be few and far between. I love my j pouch. I am very fortunate to have had no issues in 3 years which I know is still relatively new. My sister and uncle have long time j pouches and they have had no issues as well. I had a temporary ileostomy in between surgeries and I had a really hard time with it....just my experience. All the best to you.

Edit- I should add that my temporary ileo was a loop ileo. They are notoriously troublesome. From what I have read (and I have done a lot of reading!) the permanent end ileo is much more easy to deal with.

I am an extremely active and somewhat vain person (lol) and have zero issues with my "bag"- no psychological issues (my wife loves it, really, lol- it's a non issue for us), no leaks whatsoever (had one little one in the first month before I figured out things), no odor, no noises that anyone can ever notice (tummy rumbling on wakeup due to empty stomach). I change it every 5 days or so (takes me about 2 minutes max), I have total control over going to restroom, can put it off for 6-8 hours if I want to, etc.. It is not even 4 months old. Invisible under clothing. Some people do have issues obviously (NCOT has made a whole career on this forum despising hers) but for the most part there are quick technical fixes for all of them. I had a couple complications that are ancient history now- an ileus shortly after surgery, plus an infection on out layer of my main incision that required reopening it, wound packing, wound vac, and plastic surgery to repair the resulting crater. That resolved everything, and I am now extremely active and totally free of IBD symptoms.

If you are on the fence you could opt for a 3 step as I did and if you like your end ileo, stop right there, and if you find you hate it even after a few months, proceed to a jpouch or BCIR or whatever, but I truly love not ever having to "hold it in" in any way; it literally gives me joy- I didnt even have that kind kf freedom in my so-called remissions, where I could suddenly get urgency.

You'll find tons of people very satisified with every type of surgery, and a minority who arent, so do a search like you would on amazon for both the 5 stars and the 1 stars.

Edit: oh, from what I can tell and from what my WOCN's say, ileos can be problematic for obese people in oarticular- wafers dont attach well to heavy rolls of body fat. Another category of people that can have issues are those with a history of extensive, chronic skin rashes. Lastly, some people cant get the stoma placed where they woukd prefer it. For me it was imoortant that it be below the beltline if most of my oants and they managed to do that. Mens jeans are a bit low rise nowadays so for those I may need to compromise a bit but all my other pants sit just above my stoma and this helps keep the who,e thing invisible even if it fills up, and allows it to flow without issues. That was my personal preference and my point is simplynto say that I can see that if someone was forced to have a stoma in a location not suited for their lifestyle it might be a nuisance (even though there are technical solutions in most cases) but I think that is where my vanity (lol) played a role and fortunately I got it to work out- below was an "optimal" location for wafer adhesion for me as it turned out (no major skin folds there- minor ones are not a big issue for wafers).

Post Edited (Probiotic) : 8/23/2013 3:13:33 PM (GMT-6)

Im with probiotic, I am not a candidate for a jpouch so I have a permanent ileostomy. I have very little problem, the odd puffer fish every now and again, but it's not what a I though it would be, I don't smell, there aren't noises, my partner loves me to bits, I can wear what I like (even skinny jeans) I change it every 4- 5 days which is great, and I get to live life ...all the best with your decision