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.