Living Well with an Ileostomy: My Journey and Choices

July 3 I saw my dr for a check-up; everything is ok. After the exam, he gave me my options:

                           1) do nothing
                            2) remove rectum stump, sew up anus
                           3) j-pouch (know nothing about j-pouch and am terrified)
As we were talking, he said with a j-pouch I could expect 8-10 bathroom trips a day
and periodic anus leakage. I told him I just drove 1 1/2 hrs to see him and did not have to stop once for a bathroom visit. When I first started seeing this doctor, in the same trip I would have stopped 3 times. I do not need to know where all the bathrooms are, and it is really nice. I can finally sit and watch a 90-minute movie without having to pause it twice to go to the bathroom. I sleep pretty much all night from 10 pm to 5:15 am without having to get up twice. The list of small things I am now able to do because I have an ileostomy is really quite long. Sometimes I feel a little guilty because I realize things are going quite well for me; I have adjusted to my stoma quite well and have really had very little issues with it.
The last year before my operation I was caffeine-free, gluten-free, dairy-free; that was a suggestion given to me to try and make UC tolerable; it did not help much. Now I eat fairly normally; I miss fruit (apples, oranges, grapefruit, etc.). This was the first thing my dr said we are getting you eating as normally as possible. When I was at my worst, I was scared to eat. My stoma, I believe, gave me back my life; all I have to do is live it. I wish I had the confidence I read other people have; I am still a bit nervous about my stoma and the reactions of other people. I really should not care what they think, but most of us willingly or unwillingly do care.

Thanks, Ed

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Fox body, if I were you, I would do number 1 - NOTHING at all. It sounds like you're doing well, so if it isn't bad, don't wreck it. I have had too many ops and severe scar tissue issues. Haha, that rhymed, but yes, I do understand what others think - say the opposite sex! It's been an issue, but my issue. I would have loved to have kept my original stoma; no pain, best stoma - I have ever had. This is my 3rd time; just wished I wasn't told 12 months we reverse you. It would have been much better to have been told something else, stay as you are. I know it's freaky, and yes, I touched my stoma, no probs; it's like mine, not anyone else's tongue - stoma, same same.

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MOOZA

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xx

foxbody- you sound so happy with the way things are. I'm with Mooza; don't do anything! A very wise friend of mine gave me a line of advice I apply to situations all the time. He said, "When in doubt - don't!" Don't do anything - just let it be! Be happy because it sounds like you are!!!

Ed, I lived with a j-pouch for 6 years but now have an ileo as a result of dysplasia. The j-pouch worked fine in that I had no leaks but needed to use the BR frequently. I am perfectly comfortable with the ileo and I have never felt better. You got your life back and things are going quite well. Don't screw it up with more surgeries.    PB

I was slated to have a J-Pouch, and because of post-op problems that can happen with that procedure (reason it doesn't have a high success rate), I was left with no choice but to settle for a permanent ileostomy. Had I known all I do now about the success rate, the frequent bathroom visits all over again, and the "butt burn," I would have never considered it and saved myself nearly 2 feet of my small bowel.
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I had constant mucus output from my rectal stump, so between that and the fact that if you leave it in, UC can still be present in that area, I opted to have it removed and am so glad I did.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Mooza, thank you. Thank all of you. And that was basically what the doctor said: I do not have to do anything. And by the way, see you in a year. This is great; I am on no meds, my diet is fairly normal, I am starting to gain some weight, and feeling pretty good. I have a little more wrenching to do on my '79 Fox-body Mustang. And I almost feel like doing it.

Thanks, Ed

Hey Ed, I also have an ileostomy (over 4 years now) and there's absolutely nothing that I can't do. I eat everything I want, I swim & shower, I wear a bathing suit and short-shorts, and even ride on the back of a motorcycle for real long trips...so, what is it that we ileostomates can't do? I have to admit that it's not always easy dealing with emptying the pouches so often (even at night I have to do it once)...but we have our life back, as you said. I never will entertain any additional surgeries (including reversals) because at least I know what I'm dealing with now and do not want to screw this up. I can cope with it! As for dating, I think we're all leery about this subject...but I've found that no one out there is without problems. So called "normal people" live with other maladies/illnesses that you would never know about. I'm kinda dating a so called "normal guy", but he's dealing with the embarrassment of having permanent psoriasis which is an autoimmune disease that doesn't go away...and, he doesn't feel "normal" either. What we both have, though, is mutual respect and support for each other's conditions...now, that's something! So, I guess what I'm saying is that when you DO meet the right person, it's all going to be OK...PS: I had a 66 Mustang back in the day! Now, that WAS A CAR!! Take care.

Hi Ed, I understand your position. I had the same situation for about 10 years after I had ileostomy surgery in January 2000. For me, though, I had the doctors recommend having my anal stump removed a few years ago. They were concerned with it and they suggested surgery. In a way, this helped me adjust to a stoma and a bag because they were made permanent and I stopped thinking "what if, what if" I could get it reversed. So, I am thankful for my doctors' advice. Just trying to help you decide what to do! Bye.

it's all about QoL.

I ended up having the rectum removed and anus sewed up because I still had UC in my stump. No biggie, I, like you, can now sleep through the night and don't need to know where a bathroom is every 15 miles on road trips.

It's not perfect, but I'm alive and am beginning to get back into all the activities I once enjoyed before UC consumed my life.