J-Pouch V . Permanent Ostomy

I have a choice between getting a j-pouch (they create a small pouch out of your small intestine to act as your colon does) or a permanent ostomy.  I can always try the j-pouch and if I do not like it, I can get a permanent ostomy.  But if I choose to get a permanent ostomy,

Initially, I think that the j-pouch is more unpredictable than a permanent ostomy, because of the risks that “can” happen.  The trade-off with a j-pouch is that you do not have to wear an ostomy bag on your stomach for the rest of your life.  There is no way out of going to the bathroom 4-6 (+) times a day.  That is my new bathroom reality with either option. I’m not too happy about this, oh well.

My doctors immediately suggested that I get the 3-stage procedure. They said my small intestine was very healthy and so was the beginning part of my rectum, meaning the disease did not affect these areas.  Stage-1 removed my colon and gave me a temporary ileostomy Stage-2 remove rectum and anal lining and create a “J” looking pouch out of the end of my small intestine and connect to my anus Stage-3 take down my ileostomy

I had no choice about stage-1.

With my next check-up appointment not too far away, I realized I must actually think what I want and what option would give me greater quality of life.  It is a tough decision, so I made a pros and cons list…

Biggest Decision of My Life Pros Cons
J-Pouch  – Nothing on my stomach- Be “normal” using butt- Small decrease in fertility and likely to get a c-section

– Probably less diet restrictions

– Low complication rate

– Good to excellent quality of life

 – Urgency at beginning- Chance I could go more than 4-6 times a day (especially at beginning)- At least two more serious surgeries

– Possible early complications (pelvic sepsis, anastomotic leaks, small bowel obstruction, pouch bleeding,  incontinence)

– Possible late complications (Pouchitis, pouch fistula, and pouch stricture)

– Medications or surgeries to fix possible complications

– Probably need good insurance for rest of life

– 8-10% fail and are given a permanent ostomy anyways

– Yearly? Pouchoscopies to check for inflammation, cancer, etc.

Permanent Ostomy – No urgency- Probably just one more surgery to make it permanent- Wide range of products to make life easier (conceal, deodorize, thicken, hide, belts to exercise etc.)

– Less drop in fertility and better chance for regular birth

– Never have to hold in a fart

– I have a good stoma already (not flush and barely any skin irritation)

– Bag change will become routine

– No ‘oscopies ever again

– Good to excellent quality of life

 – Ostomy bag and stoma on my stomach- Hard to change ostomy bag with a big pregnant belly- Blockages (no nuts, seeds, raw vegetables (carrots, celery, salads) popcorn, oranges, skins, & most fresh fruits)

– Cost of supplies (probably need good insurance…)

– Possible complications (stricture, undercutting, fistula, retraction, prolapse, leakage, edema, and ulceration)

– Emotional side effects

I am not decided, but I feel like I need a decision in the next week or two :/.  I’m pretty scared, because either decision is going to take a lot of adapting to, mentally and physically.  I know it is a personal decision.  I could always try the j-pouch and if that doesn’t work, I could get a permanent ostomy.  Though, I would rather not have to go through more trouble than I have to.  I am 90% comfortable with my ileostomy, so I am on undecided what I should do.  Bag changes only take an hour out of my week, a lot of food does not bother me, and I can hide it pretty well.  I really do not know if I should test out the j-pouch.  Maybe it would last me a life time, maybe not.  I really feel that the j-pouch is just asking for trouble.  But I can run into trouble with either option, making this a tough decision.  What trouble do I potentially want to get myself into?  I should express my concerns to my doctors at the check-up appointment coming up and see if that helps me decide.  Oh, boy.


8 thoughts on “J-Pouch V . Permanent Ostomy

  1. I had a J-pouch and it failed miserably. The first year I bleed out so badly that I almost died. I was anemic the entire time I had the J-pouch which stopped right after I got an ileostomy. After four years I got pouchitis and suffered for three more years on non-stop heavy antibioctocs that lead me to getting C.Diff and setting off a whole new condition called Autonomic Dysfuction. Even at my best health I had to go to the bathroom every three hours and the urges to go to the bathroom were so painful. I suffered through all this and so much more just because I didn’t want to have an ostomy. Once I did get the ostomy I couldn’t believe how stupid I was to put up such a fight for a worse state of health over not wanting to wear a bag. I lost my ileum as well because the doctors use that part of your intestine to make your J-pouch. When they removed my J-pouch I automatically became vitamin B deficient and now require bi-weekly shots. I didn’t have a choice to get the J-pouch, I was 16 when I got the surgery, but if I would have only known better I would have got the ostomy then and there. My health overall would be so much better. Vanity taught me a very hard lesson. I had ulcerative colitis from age 14-16, J-pouch 16-25, ileostomy 25 to now being 28. I don’t want to come off as jaded or harsh, but I would never recommend a J-pouch. I’ve never met anyone who successfully had one to date, they all ended up with pouchitis. I never liked having the J-pouch and it caused a lot of scar tissue. With my ostomy I can eat anything I want, no problem. It’s all about chewing your food and taking your time. Yeah I’m the last one at the table, but I’m enjoying my food instead of gulping it down. If you have any question please ask and I will tell you my experiences. I wish you the best of health and happiness.

    1. Hi Sierra,

      I can see why you don’t recommend a J-pouch. I am worried of running into unnecessary complications. I don’t want pouchitis for two reasons. One being I don’t like bleeding and being in pain and the other being that I don’t think I react well to the antibiotics commonly prescribed to treat it. My first time on them, cipro and flagyl, I got C. Diff. and no one likes C. Diff, and I couldn’t keep anything down..And if my J-pouch were to fail, I would be worried about losing more of my small intestine and not being able to absorb the nutrients my body needs…and I love enjoying my food too! We are supposed to chew well and drink lots anyways, even if we had colons. On the other side, with a permanent ostomy I’m concerned about parastomal skin problems…Do you use any special products to avoid skin irritation?

      I will let you know if I have any more questions.

      1. Yes, I do have skin problems. I’m allergic to all ostomy supplies, just my luck I know. Still I rather deal with contact dermatitis than my old J-pouch. I use a topical steroid to keep my skin under control. My skin works best with Hollister and Coloplast products. I do have to deal with peristomal skin irritation because that’s just the norm. with ileostomies. The thinner stool eats away at the wafer quicker than an colostomy. But, that’s why they came out with skin barrier rings which make all the difference. Also I worked with the Mayo Clinic and got a new procedure approved. Botox injections around the stoma site makes a world of difference. It keeps your skin so dry that you get at least two more days of wear time. I love getting it because it also helps keep the contact dermatitis under control as well. It’s not hard to get it under control as long as you experiment with every product out there and see what works for you. Right now I’m trying a product from the UK. They came out with a barrier that blows anything we have here out of the water, I’m falling in love with this product because it really keeps your peristomal skin intact. It’s called Dermacol, stoma collar by Salts healthcare. I would recommend that to anyone that is having serious problems and hasn’t found a solution here in America. I hope this helps.

    2. Hey Sierra C what you told me about the peristomal skin products has helped :). I’m currently going through some skin problems. I now use the moldable rings either by coloplast or convatec. I also need to use a hydrocortisone foam to keep my skin happy and stop it from weeping. I did choose to try the pouch, but I have had my ileostomy for 8 months now and will probably have it for a few more months. Thanks again! Hope you are well.

  2. I have a permanent iliostomy, and eat raw vegetables and popcorn all the time. Eat steak, roast beef, corn on the cob, and many other foods I hadn’t been able to eat for over a decade…

  3. Great post! This is a very good list of pros and cons. It is great that you are putting much thought and research into your decision. I do have one comment on the con list for the permanent ileostomy. You may very well be able to eat most of the foods on the “no” list with a permanent ileostomy. I eat nuts, salads, popcorn and raw fruits and veggies regularly with no issues. Knock on wood- I have had my permanent ileostomy for 2+ years and have never had any full or partial blockage. There are a couple of foods I avoid (I don’t eat a lot of celery and watch the white fibrous stuff on oranges) but other than that I eat just about everything. As long as I don’t go overboard on quantities of possible trouble foods, chew well, and drink a lot of water, I do okay. I was given that list too, but my nurse and surgeon said I only needed to follow it strictly for the first 8 weeks. After that, I could experiment with the foods slowly and see which, if any, caused me issues. So far, I have found few that have. Everyone is different and some people do have problems with some of these foods. However, if you opt for the permanent ileostomy you may be happy and surprised to find that you can eat a lot of things that you thought might be problematic. Best wishes with your decision. As long as you follow your heart, you will do well with whatever you choose even if there are some hard times emotionally and physically at first.

    1. Thank you! :) I still have to figure out what all the possible complications mean, but I’m getting there ha.

      Your comment about the permanent ileostomy helps a lot. I do chew well and drink a lot already, so I should try something in moderation and see how it goes. And I just passed the 8 week mark :). I really feel like I could easily adapt to a life with a permanent ostomy and knowing that I’m not totally incapable of eating some of those “no” food helps.

      Thanks for your help and wishes,

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