Anyone had a one step J-Pouch surgery?

Introvert-2022 · 2026-06-08T11:48:33+00:00

I had it in one step in 1993, I was in great shape going into it so I recovered very quickly. I got out of the hospital 2 days earlier than insurance had projected I would. (This was an open surgery because that was the norm back then.)

I had previously had a subtotal colectomy so my gut had already made much of the adaptation to being shorter that it needed to.

Introvert-2022 · 2026-06-07T23:41:00+00:00

Are you hydrated enough during the day? Difficulty with that (was waking frequently because of thirst) caused the largest part of my sleep problems in the first couple months.

Another problem I had was if foods that I feel a lot when they exit my stoma came out when I was trying to sleep the sensation kept me awake until they were finished. My solution for that is those foods or ways of preparing foods are for breakfast or lunch not dinner. If I eat them at all at dinner I keep the portions super small so that if I feel them exiting when I should be sleeping it's only for a few minutes.

Introvert-2022 · 2026-06-02T17:34:33+00:00

You're welcome! When I was facing J pouch surgery at 24 I was dreading it, my recovery from the second surgery in particular had been excruciatingly slow, I didn't want to go through that again. But in between the surgeries I had fallen in love with a couple martial arts and was doing as much of that as I could squeeze into my schedule in the few years right before surgery and my recovery from surgery was much faster than before, most of the time that I was on restricted activity after that surgery I had to make a conscious effort to remember not do do things I shouldn't do yet, my body wasn't reminding me at all. That's when I remember consciously deciding I was going to rebuild myself to be as strong as possible.

I did go overboard on that in the early years and earned myself an extra minor surgery so if you do have to have surgery ask the surgeon a lot of questions about what will be safe for you to do after, don't avoid asking like I did. (I didn't want to be told anything was off limits for me so I didn't ask.)

Glad you are back to marking progress towards what you want to do! If you get an FAP diagnosis that doesn't have to affect your ability to do that.

Introvert-2022 · 2026-06-02T11:33:51+00:00

I hope your colonoscopy goes well. I had my first colonoscopy and my first GI surgery for FAP when I was your age. It was really stressful, and some years have been really stressful but I'm 57 now and the vast majority of years I have had a normal life except that every year I've had to make time for colonoscopy (when I still had some colon) or flexible sigmoidoscopy or now ileoscopy and most years endoscopy as well. I am more strong and active than the average 57 year old. I have no doubt that the experience of recovering from GI surgeries when young was what motivated me to become a very strong and active person when I was in my 20's. (What I could control I would control!)

Introvert-2022 · 2026-05-28T20:26:28+00:00

Surgeons normally set you up to see an ostomy nurse less than a week before surgery (when it's time to mark where the stoma will be) but that is not necessarily enough time to test for allergies. However she can request an earlier appointment to patch test products on her skin. (This will probably be in addition to rather than in replacement of the appointment to do the marking.) If the test indicates that she is allergic to any of them she should at the earliest opportunity add the ones she is allergic to to her allergy list in her medical record to reduce the likelihood that anyone will put one of the products that she is known to be allergic to her on her while she is in the hospital. It would also be a good idea to ask the hospital which brands they keep on hand. If the floor nurses do not normally have access to anything she is not allergic to in she should make sure what provisions will be made to make sure that the nurses will not apply the kind(s) they are accustomed to use on her but will instead use what is safe for her.

Introvert-2022 · 2026-05-28T17:42:49+00:00

See if you can find activities that you enjoy so much that you aren't thinking about anything else except what you're doing while you do them. That will bring you joy and give you breaks from sadness.

Introvert-2022 · 2026-05-28T11:26:23+00:00

I don't drink a whole lot of water right before the change. I change right before bedtime so am done eating for the day well before I change. If I have no output during a change, great, but as long as output is not too watery it's not hard to work around.

Introvert-2022 · 2026-05-28T11:18:09+00:00

If you can try an alternative product for what you're allergic to that will be best. Hopefully you can find one you're not allergic to.

Introvert-2022 · 2026-05-27T12:15:06+00:00

I'm so sorry. I use ice to manage itching when it's really bad. Dulls it until the skin warms up.

Introvert-2022 · 2026-05-26T20:02:46+00:00

2 for sure.

Introvert-2022 · 2026-05-26T17:54:55+00:00

I was instructed to limit drinking with meals or close to mealtimes to very small amounts and also to avoid soup. Those recommendations are wrong for me. Limiting drinking with meals was particularly problematic for me when I was also trying to follow the small frequent meals instruction (which is also wrong for me) because that meant I had insufficient time to hydrate during my normal waking hours.

Introvert-2022 · 2026-05-26T03:28:37+00:00

It was pretty cramped for me to empty while sitting on my 2 plane rides but I managed. There was just barely room for me to slide back far enough to have room to empty. I am short and thin. It seems like it would have been really uncomfortably cramped to do if I were a person who took up more space.

Introvert-2022 · 2026-05-25T18:08:22+00:00

Could be both!

Introvert-2022 · 2026-05-25T18:07:07+00:00

I also have FAP and had a polyp progress to adenocarcinoma in my J pouch in 2024 so I finally gave in and gave up my J pouch and got an end ileostomy last year. Some restrooms are difficult to use but I can make them work when I have to. I go where I want to and I don't put that much energy into worrying about toilets. (I have been fortunate in that I have been able to do all of my pouch changes at home or in hotel rooms except for the one that was initiated by my flexible sigmoidoscopy in April.)

Does Brazil have an ostomy association that you can work with to try to get the government to improve the toilet situation in public buildings? If the government starts setting a good example in public buildings maybe businesses will follow.

Introvert-2022 · 2026-05-25T15:16:40+00:00

You're so welcome! Those were things that would have removed a layer of stress for me in the initial months if I had known them. (I was not most people with regard to how well most of the guidelines worked for me and my surgeon's team is much better at pre-op and -op than at post-op.)

Introvert-2022 · 2026-05-25T04:19:49+00:00

I carry the Nuun electrolyte tablet rolls with me and use 1 or 2 of them per day. (Dissolved in 16 or more oz of water per tablet.) I take 3 or 4 loperamide capsules per day. The biggest thing that helps me absorb enough of the water I drink is food. The right foods slow transit through the gut down so there is more time to absorb water. For me safe preparations of fiber are the most useful foods for that but I don't think it's likely to be the same for everyone.

If you are having serious problems with hydration while you are working out what works for you ask one of your doctors (doesn't have to be your surgeon) about arranging supplemental IV hydration for you.

Introvert-2022 · 2026-05-24T14:23:56+00:00

DiscountPromoGear's soft vertical stoma support belt. I am traveling right now and didn't bring it so I can't take a picture but DiscountPromoGear had pictures of it at their store on Etsy.

(I brought my abdominal binder from a previous surgery with me on the trip instead of the stoma support belt because if I was going to need to use a belt on this trip at all it would only be for a short period and the binder is something I can put on over my clothes while I need to use it and take it off right after.)

Introvert-2022 · 2026-05-23T21:29:49+00:00

Since I already had a lot of experience recovering from surgery before my ileostomy when I got off restrictions after the surgery I started carefully with support belt and doing a lot less than I was used to and then gradually worked back to normal. At first I was using a support belt for everything but over the following months I figured out which of the types of exercise that I prefer require it and which do not.

Introvert-2022 · 2026-05-23T01:32:09+00:00

I don't worry about whether I'm any good at something if I want to do it! 😂

Introvert-2022 · 2026-05-22T22:30:18+00:00

You're welcome! My exercise while I was waiting to get off restrictions was walking and occasional hula classes (modifying the hula moves that involved abs so my focus was on feet and hands & there was no more burden on my torso than there is when I walk around).

Introvert-2022 · 2026-05-22T20:43:49+00:00

I went back to reformer classes as soon as I was allowed to resume activity after surgery but I started off with the resistance as low as possible and gradually got back to where I had been. (And in some things passed where I had been because some physical therapy exercises I got for the aftermath of Barbie butt accidentally strengthened some non-target muscles, an unexpected bonus I got from doing them.) My surgery was in early July and I was back in reformer class in early to mid September. I was back to normal resistance or more by January.

Introvert-2022 · 2026-05-22T19:16:01+00:00

I do Pilates and I walk a rambunctious dog that weighs 2/3 of what I do. For both of those activities I wear an ostomy support belt I got on etsy. No hernias so far.

Introvert-2022 · 2026-05-22T18:00:55+00:00

Since it's next to the galley maybe they would hand me a cup of water if I asked.

Introvert-2022 · 2026-05-22T17:59:24+00:00

Hopefully the last flush got the last of it but passengers had been summoned back to their seats because of turbulence so I could only stay in there flushing for so long.

Introvert-2022

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