Long-term Ileostomy Experiences?

on Mar 22, 2022

Hey friends!

So I am eligible for the j pouch reversal, but I’m very conflicted. As someone who had severe UC, I can imagine that I will possibly face complications with pouchitis, and honestly I don’t miss being on the toilet 6+ times a day, which seems standard for the j pouch.
I’d love to hear from those who have had their ostomy for 10+ years on how aging with the ostomy has been/ if it’s been convenient or if problems can arise as your body changes / etc.

Part of me thinks I’ll go the permanent stoma route because my time with it so far has been great, but I guess I’m nervous that it could go downhill over the years and that I’ll wish I’d tried the reversal surgery. Should coulda woulda, right? Haha. Any stories you have to share are more than welcome!

thanks all, sending lots of healing your way!

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Comments:

Mar 22, 2022

~jo~ : I've had my permanent ileostomy (due to Crohn's) for 13+ years and it's all good so far. Weight has gone up and down, went through menopause a few years ago with no drama and no skin issues, which I've heard can happen with some ostomates. I have a friend who has had an ileostomy since she was 10 years old and she is still going strong at 55. I know there are people on this site who have had/have the J pouch so hopefully they can chime in with more info. No regrets for me in being a bag lady for life, best thing I've done and never been healthier.

Mar 22, 2022

charleston guy : I've had my permanent ileostomy for 12 years come this April, after the trials and errors I'm quite happy with it. I was asked about having the J-Pouch not long after my surgery, I declined as I told the nurse that I had enough pain and discomfort after having the Aggressive UC why should I take a chance on going through all that again? I'd rather see what's happening than feel what's happening ????. It's not worth it. Having my ostomy hasn't really stopped me from doing all the things I did before the UC just with a little more mindful. Spent enough time looking and running to the toilet with the UC why should do the same with a J-Pouch ????.

Mar 22, 2022

dmccrillis : I had 2 j-pouches which then lead to a fistula and multiple blockages and resections. All total 10 surgeries and now I am considered to have short bowel. Only suggestion I have is don't find your way down my path. I have lots of problems because of all of this. Malnutrition and dehydration are tops. I wish you best of luck with your decision.

Mar 23, 2022

Poppy Red : I've had my permanent ileostomy for over 45 years. At that time that was the only option I was given. No doubt it saved my life. Because I instantly felt well my life improved. I was already married and went on to have children. It's not stopped me from doing anything. At the start I could keep a pouch on for alot longer than I can now. I don't like it and never will but that's life.I have worked alot, some physical jobs, I worked with people for years who never knew. Retired now. I am glad I was never given options. It's alot to think about. I hope you make the right decision for yourself.

Mar 23, 2022

ron in mich : Hi Coloferal i,ve had my ilieo. for 30 some years, like others said i had UC and was offered the j pouch but was advised against it so i went with the ilieo. i,ve not had any skin issues unless i wear the pouch and wafer too long, i change every fourth day in the morning. I had resection surgery 4yrs. ago due to now DX of crohns causing my stoma to atrophy and internal scar tissue also causing problems and my stoma now moved to my left side.

Mar 28, 2022

bigal1579 : Aging with a permanent ileostomy provides no complications at all. Having read many blogs, the only complaints people have seem to be right away, as they get used to it. It sounds like that is not a terrible issue for you. I never see any complaints from long term users like myself. I think the longer you have it, the easier it becomes, even to the point of not really thinking about it too much. On the other hand, it seems like there are lots of complications from a J pouch. You could get lucky, but it seems like J pouch is still a work in progress and a permanent ileostomy pouch is tried and true and way less complicated. I asked my doctor if I was kind of giving up by opting for a permanent ileostomy, and he said it was quite the contrary. It was actually the best way to embrace life and get the most out of it, becuase it would eliminate a lot of worries.

Mar 28, 2022

BackToCa : I have had my ileostomy for over 35 years. Ulcerative colitis in college. I had just met the women who would become my wife (recently divorced). I wasn't given options for surgery back then. I recently turned 60 and I have had no major issues with the surgery. I can't say it is a joy but I can't really complain either. I can still get about 5-7 days between pouch changes. It has not stopped me from work, travel, and lots of physical activity. I still mountain bike regularly and took up surfing five years ago. I am much more physical than many of my friends my age.
I do worry about being able to change the pouch if I get arthritis like my mom had. But aging isn't for the faint of heart anyway.

Mar 29, 2022

LisaT : I have had my ileostomy for 26 years and I have no regrets. I suffered with ulcerative colitis for 20 years and the ileostomy saved my life. I was encouraged by doctors to get the J pouch or pelvic pouch as it was called then, but after researching it I chose to live with the ileostomy. I was single at the time I got it, yet I was able to find my soul mate and true love at the age of 40 after living with the ostomy for 2 years. I have gained weight and lost weight, had spilling mishaps in public washrooms, and exploding bags in bed, but nothing compares to the pain of colitis! I consider my ostomy living in an altered state, however I am grateful every day to be alive and pain and medication free. Having a stoma sets you apart from others, and now that I am 65 years old, I do worry about losing the use of my hands due to arthitis, but that is an adventure that has not happened yet. Being an ostomate is not for everyone; just a select few who have courage to adapt and live life with gratitude.

Mar 29, 2022

bluemusic4us : Just to clarify, do you have a j-pouch now but have not done the reversal surgery? That would mean you have a loop ileostomy. That is what I have. I've had the ileostomy for 11 years now. There was some sort of problem (leak or something) with my j-pouch so it never got hooked up. I had some problems figuring out the pouch leaking thing, but seem to have that normalized. I change it every 3 -4 days. It made such a difference in my life as far as health goes. Living with the bag is definitely doable and much better than the way it used to be. I do have this j-pouch that, although not "hooked up", it does tend to leak fluid and occasionally blood. I have to wear a pad all the time. That part is a hassle and at this point, removing that j-pouch would be too great a surgery. I'm 65 and would not choose to go through that if they would even do it. I do think that if I had had it hooked up, there would have been complications and multiple trips to bathroom, given my pretty severe UC before all that. So I would say keeping the bag is not a bad choice at all. Good luck to you and enjoy! :)

Mar 29, 2022

Lilsample59 : I agree keep bag. A reversal you will still be on toilet alot and Diarrhea constantly.

Mar 29, 2022

Bkovacs19 : Hello :)

I have had my illeostomy now for 42 years. I too had no other options given to me at age 10. Although the thought of not having an ostomy sounds wonderful just not sure I would trade it for other complications. And agree with most on this string that it's not something I love managing but it is what it is I find now my complications are food related and abdominal scar tissue from several surgeries and not issues with Chrohn's disease. ????

Mar 29, 2022

Yeoman-Bowman : Looks like I'm going to buck the trend here. I had UC for 25 years, it was distal never reaching past 30cm but occasionally had me housebound and hospitalised.
In 2011 I had a panproctocolectomy and ileoanal pouch. A temp ileostomy for 7 months and a reversal on 29 Feb 2012. There then followed the best 4 years of my post UC diagnosis life. OK I had to empty 5-6 times a day but there was NO urgency and I could hang on comfortably for 30 minutes and at a push an hour. I had no worries about flying 4 hours to Greece on holiday and lived life to the absolute max.
If it was not for sheer bad luck and a totally unrelated cancer issue (I was diagnosed with gastro NETs in 2016) I would still be living a happy life with my wonderful pouch.

The 'bad news' cases tend to outweigh the 'good news' cases on all forums because those with good pouches aren't on forums looking for help and advice.

Things to consider:

1. Do you definitely have UC and NOT Crohn's? Crohn's will reoccur in a pouch. As far as I know pouch surgery is not an option for patients in the UK.
2. What is your general state of health? I was lucky enough to be fit and healthy prior to surgery.
3. How many pouch operations has your surgeon performed? Try to find one who has done 40-50 at a hospital that specialises in pouch surgery. In the South of the UK St Mark' in London and The Churchill Oxford (where I had mine) are considered centres of excellence.
4. Are you prepared to endure a tough few weeks post surgery? I was in hospital for 20 days and poorly for most of those. After discharge my recovery was rapid, out and about within days and back in the gym within months.
5. Have you got strong sphincter muscles and good pelvic floors? Any damage or weakness could contribute to possible leaks.

In a nutshell; life with a good ileostomy is great. Life with a good pouch is even better. (My experience only).

Mar 29, 2022

rross613 : I'm 70 and have had my illeostomy for 45 years, with no regrets. But it's up to you.

Mar 29, 2022

Elzie : Not much that I can add to what's already been said, except for experience. My whole ordeal from start to finish was 13 surgeries/procedures. That included the total colectomy, failed j-pouches, abscesses and MRSA. When it was all said and done I am so glad that I decided to go with a permanent ileostomy. It truly gave me my life back and freedom to live like I want. I am a mechanic (well, up until last Friday) and very active. Once I got my diet figured out life became easier.

Mar 29, 2022

Elzie : I should add that I have had it for 16 years.

Mar 29, 2022

Dahlia : Of course I couldn't have known then, but I know now I'd have been better off keeping the ileostomy. I couldn't deal with it as a 20-something newlywed. After getting the J-pouch, I had many more emergency surgeries over the years, all involving issues with the J-pouch, plus recurring pouchitis. Even at my best times, I had to still plan my life around bathroom access and use the toilet 8-12 times daily, which wasn't a huge improvement. My diagnosis was also changed from UC to Crohn's, and the disease has spread up my small intestine and caused fistulas in the J-pouch that can't be fixed. So now at 49, I'm having permanent ileostomy surgery anyway. If you are satisfied with life with an ileostomy, you might avoid a lot of hardship by keeping it. Sorry to be negative, but none of the risks were explained to me before j-pouch surgery (though who knows if I'd have listened if they had been!).

Mar 29, 2022

ChaB : I feel we have a love hate relationship going with the stoma, mines has been permanent from the off. Times I wished that a reversal was possible would have been my first year, now? I wouldn't go back. I've lived peacefully with the stoma since 2009 till last year when it was found I had a fistulated abscess requiring an abdominal Seton suture plus flare up of Crohn's...more on that another time. If all options are open then yes consider what gives you the best chance and quality of life. You come across mentally prepared for that decision whatever that may be, that's healthy

Mar 29, 2022

provner : I am so glad I saw what you wrote because I have had an ileostomy for over 30 years and before that I also had UC. When I had ulcerative colitis, I was always on the toilet. One time I lost so much blood that I needed 4 units of a transfusion. Once I had the ileostomy, I got my life back. I even gave it a name. I know it's a stoma, but I named it "Shlomo the Stomo" because I love it so much. With Shlomo I was able to travel around the world with my husband. I've been to South Africa, Ecuador, Madagascar and Thailand to name just a few of the places we visited. Getting an ileostomy was one of the best things that happened to me. I love Shlomo and could not have made it to 80 without it.

Apr 09, 2022

Meadow Snow : Hey colonferal!

I'm UK based, in the south of England. I was diagnosed with UC back at the end of October 2013, and then a few days later, 2nd November 2013, I had to have an emergency subtotal colectomy - either lucky or unlucky depending on which way you look at it. I didn't have years of chronic pain and bloody diarrhoea. But on the other hand, I had to have surgery when I wasn't mentally prepared for it. I hadn't even processed the fact that I now had a life changing chronic illness (I was too unwell to do so, an inpatient at my local NHS hospital), when my crumbling-to-pieces-in-their-hands colon had to be hoiked out. So for me my first stoma represented all of that and I ended up really resenting it, despite it saving my life. So as soon as I was eligible I had j pouch surgery, which for me was the best decision for my mental health, I think. However, after maybe 8 months I started having pouchitis, which eventually became chronic and I was antibiotic dependant, and eventually using biologics, and now I had barbie butt surgery just last month, on 3rd March. But that's only my story. Even though the j pouch didn't work for me, I'm still so glad I had that surgery done. However, it's not for everyone. Something that may help: there's a YouTuber called Hannah Witton who made a great video a couple of years ago weighing up the pros and cons of having a j pouch and having a permanent stoma. It's called Permanent Stoma or J Pouch Surgery? It features a whole load of other people who have either a temporary stoma, a permanent stoma, or a j pouch. At the time of writing this, Hannah still has a temporary stoma and is actually just starting her maternity leave coz she's pregnant, woohoo ????! And while on the topic of ostomy YouTubers, there's also people like Maggie from Let's Talk IBD, Amber from The Ostomy Diaries, and Eric from Vegan Ostomy. Eric doesn't really post videos anymore, but his back catalogue of videos is such a useful tool of information, as is his website, veganostomy.ca . Hope this all helps! And I'm happy to talk ????
-Meadow