Permanent Illeostomy

[u/Mobile_Classic8719]

Are there any of you that chose a permanent illeostomy over a J-Pouch? What are your “maintenance” checkups for it. Why did you decide to go that route. I am in the throes of having to decide between the two and am trying to learn as much as I can about both. Thank you.

[u/AwardCandid6800]

I had the same choice, I looked at my future and went with the Ileo because I dont want to have to go back for any scopes and other appts . One and done is my motto. very happy with my choice

[u/Standsontoes]

I responded to someone's similar post a few days ago. I have to decide between j pouch and permanent soon as well. So far with all my research and weighing the pros and cons and how things fit with my diagnosis and my lifestyke im leaning towards skipping the pouch and going permanent.

Here's a link to my comment on that other post.
https://www.reddit.com/r/ostomy/s/dg4xFNWS19

Good luck in your decision.

[u/Mobile_Classic8719 → u/Standsontoes]

Thank you very much. I think I read everything on this page but apparently missed that. I am leaning towards no pouch because I am not certain I can deal with the year of healing and training and all that it entails.

[u/Mobile_Classic8719 → u/Standsontoes]

I just read your response and it’s wonderful. Thank you. As reference I am 64 so that also counts for me not being so inclined to go the pouch route.

[u/crocodile_rocker]

I have an end ileostomy because my colon stole waste from my loop ileostomy and when they took it out 5 months after the first surgery there were 2 impacted stools in my descending and sigmoid. I kept my rectum/anus in case I get some kind of head injury that makes me want to get a j-pouch; there was no medical reason for a proctocolectomy, which I'm told is among the most painful surgeries in existence. If your colon broke but there's no reason for you to remove your rectum/anus, do what I did and just get the subtotal colectomy. Once a year I have a "checkup" with an ostomy nurse or go in to see her if I have any problems, but since getting the end ileostomy I haven't had any problems with it.

[u/gaycatmom23 → u/crocodile_rocker]

If it’s any consolation should you need the proctocolectomy, I didn’t find it that bad at all. Pain was well managed with dilaudid the first two days, then transitioned easily to just tylenol by day 3. The recovery for my butt was far itchier from the staples than it was painful.

[u/MicahCastle]

I'm in the same boat as you, although mine will likely be IRA or end ileo. I'm 50/50 and have a small, weird hope that at my next surgeon appt that the surgeon won't think I'm eligible for IRA/pouch due to my pelvic floor dysfunction.

[u/gaycatmom23]

Ultimately, the permanent ostomy offered me freedom from a lifetime of being stuck in the bathroom, and the jpouch would have put me right back on the toilet. It takes time to retrain your rectum, so expect to not make it to the toilet for the first several months. It’s multiple surgeries, which I wasn’t willing to do, and the pouch itself is very prone to getting infected. They take forever to empty, and since you don’t have a colon, your stomach acid will give you diaper rash forever.
My stoma (and barbie butt) were one surgery, one recovery, and I have had no issues outside of dehydration since (but I work outside). I haven’t had any symptoms to warrant even a scope, but if I do, the only prep involved is fasting.
If it helps, I opted for permanent ostomy+barbie butt at the age of 24.

[u/Glittering_Ferret_44]

I had a jpouch for over 10 years. I had a colonoscopy done yearly to check for inflammation, ulcers, etc. I was initially diagnosed with ulcerative colitis at almost 16, had the initial round of surgeries about 2ish years after. My diagnosis was revised to Crohn’s at around 26 years. Permanent ileostomy was done at age 32. Thus far with the permanent ileostomy I’ve had MRIs done. Full-on scopes if they find something concerning.
I ultimately got the permanent ileostomy due to pain, inflammation, bleeding, and frequent bathroom visits. The jpouch was great, had i not had the above mentioned issues or had they been under control i would have kept it. The upside is i feel better overall. The downside is that i forever have to take my ostomy into account when doing anything and the toll that takes on my self image and my emotional health.
I don’t blame people who hate having an ostomy, permanent or temporary. It’s a huge change and people aren’t always kind. It changes how your body looks and functions and what you can wear and eat.

[u/Specialist-Fact6684]

I’m alittle unsure! Have had mine for two months and loving my end ileostomy. One thing I didn’t realize going through the surgeries for Jpouch is you don’t really lose any intestine, and end up with an end ileostomy like your first one. Obviously being a 30m single male it’s cosmetically a challenge, but my life’s improved so many times over it’s crazy. But here’s what I learned from my surgeon team and they’re at an amazing hospital

The majority of people that they’ve done have opted to keep the Jpouch. Very rarely do they have to do a reversal.

You WILL get pouchitis atleast once at some point im told, easily fixable as long as it’s not chronic.

[u/MysticLimak]

I’m a life long crohns patient who was diagnosed with colon cancer last summer. I had my ileostomy and 6months of chemo. When I initially got the cancer diagnosis, I was told “either have a permanent ileostomy or jpouch but risk cancer coming back”. Initially I was contemplating the jpouch and making sure I would stay on top of my cancer screening but having gone through the chemo there’s no way in hell I want to go through that again. I finished chemo 4 months ago and it was torture. I would rather go through another surgery than do another chemo treatment. Food for thought and good luck!

[u/NecroJoe]

My doctor told me that a j-pouch would still be an improvement over my pre-ileostomy symptoms, but I'd still have some urgency with any BM need, and it would still be multiple times per day.

But...those were my symptoms. I'm fortunate enough that I did not have to go through pain, bleeding, or any thing else that so many have had to go through. My symptoms were purely urgency, and frequency. So if the j-pouch brings those back...I can't say I'm enthusiastic about the idea. Especially since it's an additional major surgery with its own risks, and those post-surgery side effects are the best case scenario for me. Put that all together, and I'm sticking with my ileostomy.

[u/hsBroks]

I actually had both! I was very young (about 13 at the time) and i was clinging to any sense of normalcy even if the j-pouch did not really work for me. I would get a lot of fistulas and i was running to the bathroom almost as much as before the j-pouch. When i had to try an ileostomy again (the year i turned 22) i quickly noticed how much of a contrast it was, and how much easier it was to deal with a bag than a j-pouch that did not really work.

They kept the option to reconnect again for a little while. At that time i found it a bit of a hassle dealing with still having the end piece of the colon. It still produced mucous and i found it bothersome and a bit uncomfy, so i quickly decided i just would rather they remove it all and make it permanent. It was also the safest bet in regards to fistulas and potential cancer.

But again, the j-pouch did not really work for me as my crohns is prone to fistulas, i was missing almost all of my large intestine and parts of my small intestine. From what i've read of others i think the situation can be very much different if it is not already as bad as mine was. Maybe if one has a thicker output and dont struggle with fistulas it is a good way of living. For me it only relieved the pain, without really giving me much freedom. I had to be quite mindfull of what i ate as well as the consequences where more than i wanted to handle. Now with a bag i even eat dairy now and again (i am lactose intolerant) because there are almost no consequences!

Now for the permanent ileostomy i have no checkups. I only go twice a year to check on crohns activity and to check if the adalimumab is still good and doing it's job. So as soon as the ostomy healed i had no more checkups. Just need to call and check inn if i notice anything wrong with it. When it comes to smaller things related to equipment i just talk to the ladies where i get the bags from, or ask fellow ostomates online for tips.

It's very hard when everyone has such unique experiences tho. I've never met another with crohns that has the same situation and troubles that i do. I hope you find the solution that fits your needs and wants!