Who here has an ileostomy for life?

I've had my ileostomy since October of 2006...going on 12 years. Compared to how things were before then my life is now perfect in every way. I'll be 78 soon.

no i havent asked for a second opinion i am not sure how to do that even lol an plus i would feel abit rude about saying that having social anxiety i worry about thiings like that an dont like to ask my surgeon too much as he over talks me anyway an makes me think he doesnt want to go into detail with me as he thinks probably i should accept what he says as hes the surgeon im not lol but i maybe should do one day if my surgeon doesnt ever change his mind im hoping one day there will be an option for making it better , its not too bad really doesnt cause me big problems or anything just causes more irritation that cant be fixed cause of the way the stoma is so maybe surgeon is right its better not to risk surgery just for an irritation problem although it gets on my nerves an makes me sad sometimes

I am seeing my gastro doc soon actually so he could refer me for second opinion you mean ? He is much easier to talk to then my surgeon actually i feel he lsitens to me an dont talk over me well my surgeon i feel nearly shouts at me hes so loud definetly makes me feel i cant push him for more details , my gastro doctor actually told me in jan this year i could have a reversal even though he said the disease was in my rectum too , but it is a risk of that making crohns come back but i didnt ask him what the percentage was,, but in feb my surgeon never mentioned reversal an i didnt even ask him as he was talking about how im still healing and it would be to dangerous to do anything with my stoma so i assume i cant have a reversal even though the gastro put it in my head i maybe could but he is not a surgeon so im wondering if he shouldnt have said i can have a reversal as it seems he was wrong, not sure id want to anyway because of risk for crohns comin back but having a better stoma would be good

Thats good you are better with asking questions now I guess you have been so many times an gotten fed up not saying what you want with practice you can say what you think now

Post Edited (lazyminimoo) : 4/2/2018 4:13:52 AM (GMT-6)

Thanks ncot , I want a reversal sometimes though even though it would be a risk i think i might just do it an take the risks but then other times i think no thats foolish ,but you still have not had to go back to an ileostomy since your reversal , even though you had the crohns come to the rectum so maybe rectum crohns isnt so bad as crohns in the colon is, is it more manageable if its just in the rectum do you think? Im seeing my gastro finally next week , my stoma nurse thinks my doctors are thinking of waiting years before doing anything if they could do anything for me because i was in such a bad state when i had my stoma done

Ya same here i dont think i ever had fistulas or anything in my rectum an if i had it in my rectum all along which i must have done it wasnt that bad, only had urgency feelings a few times a day an not everyday an i didnt have pain hardly,, so if things will be like that again its not gonna bother me really ,, Can i ask you i dont know how bad your disease was before your stoma first got made but if you knew before your reversal it would definetly come back in your rectum then would you still do the reversal? So hopefully no regrets about reversal is what im asking really

Your GI is right. It's better to have the tests first if you can wait.

Rectum removal is 100% permanent, so if you want to try out a reversal, rectum removal definitely is not the way to go. That said, if I were to go back to having an ileostomy I'd insist on getting my rectum taken out too. Partly because I'm just so over problems in that area, but also because an inflamed rectum just sitting there gathering dust is a potential cancer risk. Not necessarily a high one, but why have the risk at all if you can remove it?

Butt burn affected me really badly for up to a year after my operation: I got through a lot of calmoseptine. It's not as bad nowadays, but if I get too careless with my butt-wiping routine or I eat a lot of rich, sugary/fatty good, it soon makes a reappearance. Pro-tip: I recently discovered that a posh lip balm made out of beeswax and menthol (the menthol isn't strictly necessary but I find it cooling and soothing) works even better than calmoseptine.

As for using steroid suppositories to treat rectal inflammation, it probably won't last. Steroids are great maskers of inflammation, but tend to be rather poor at actually healing the mucosa - thus the symptoms tend to return soon after stopping steroid treatment. I mean, it does absolutely no harm to give the suppositories a go, but I doubt very much they will have any long-lasting effects. If the inflammation doesn't go any deeper than the mucosa (biopsies from a flex sig will be able to show how deep into the bowel wall the inflammation goes), then mesalazine suppositories might be a better choice - not least because you can take mesalazine long-term without any harm.

But I guess things wont be back to normal ever no matter what surgery i do now sigh

Exactly that. You'll never go back to having one perfect solid poop a day, no matter what you do. It's physically impossible without a colon.

People who say things like they'd rather die than have a stoma, or whatever, have absolutely no idea. I've never heard anyone with UC or Crohn's say that, and that's for a very good reason. They can compare life with a stoma to life with severe, uncontrolled IBD and, in virtually every case, know that the former is better than the latter. You do get used to having a stoma. Some people adapt immediately and don't really have any profound shock; others have a longer learning curve. Because I was so depressed (for various reasons) after my first surgery, I think I projected that depression onto my stoma (there are a lot of whinging posts by me in 2013/14 on this board).

So for a year or two I hated my stoma, or felt like I did, even though it worked pretty well. I had a few leaks and accidents in the first year, but they had dwindled to virtually zero by year two. One day I was changing my bag and realised that I no longer regarded the sight of my stoma with disgust: it had just become another body part to me. That was probably also the point I should have decided against reversal surgery, but I was dumb and reckless, so didn't.

If I could just wave a wand and go back to my stoma as it was in 2014/15, I am virtually certain I would do it now. I feel like I was healthier back then and I wasn't on any Crohn's meds either (on 6MP and Entyvio currently). But right now I'm just not ready to go through the upheaval of major surgery and a year's recovery/adaptation time. It's hard to justify when I'm not that ill.