Has Anyone Had An Ileostomy?

[AsuraGuardian]

Has anyone had an ileostomy who could give me the pros and cons in your experience?

I have Crohn's, I've had it for 17 years and the last 10 years I've lived more in a flare than out of one. Now I have kids it's even harder and I see it limiting their life too. (they're too young to care yet, but it doesn't stop me feeling guilty!).

My Crohn's is so far only in my colon, so an ileostomy would help, plus I would cope fine with changing a bag more than I would shitting my pants daily. I imagine my consultant would be reluctant but I am at the end of my rope.

I'm just..... Done. It's relentless.

Anyone?

No ileostomy here, but I wanted you to have a reply! I have Crohn's too and I feel your pain. Luckily it's ok for me at the moment (but was awful this time a year ago).

From what I know, Crohn's can reoccur in a new place after surgery, therefore removing the affected part of the bowel doesn't always help as much as we think it ought to.

Are you on biologics? I've been on Infliximab for around 5 yrs. It works well.

Hope you can have a useful chat with your consultant about your options for surgery/medication and get a better quality of life soon.

Take care.

I haven't but a close friend has. She has Crohns and had tried everything medication wise plus she had repeated attacks of pouchitis, internal abcesses and a fistula. Her op was major and took over 12 hours as her insides were such a mess from the disease and from previous procedures

Since having it she is like a new woman and says, despite the odd leak while getting used to things, she wishes she'd done it years ago rather than battling on

Good luck with your decisions

My Dsis and her DP have both had an illeostomy they have ulcerative colitis, not Crohn’s though.

Dsis had hers done about 25 years ago, her partner when he was in his 20s I think. They met through a colitis support group and have been together about 18 years now.

They live entirely normal lives with no worries about flare ups, they have a lovely DD. My Dsis was often in agony before she had it done, she’d never go back to how it used to be.

I had an emergency ileostomy in 2014 reversed a year later. If you want to PM me, feel free.

Pros:
Once recovered from surgery, it was great to have no pain. The stoma nurses were brilliant and help was at the end of a phone /regular initial visits when necessary. Online support from the Ileostomy Association and other similar groups was useful and reassuring. Any minor issues with stoma fit were sorted really quickly and I was changed from a flat to a convex bag. There are many types and what you start out with may change as your stoma heals/shrinks.The aim is always to get a very close fit around the stoma,

I had very few issues with what I could eat, in fact I was able to eat steak again, which I hadn’t been able to for years. Drinking was more of a problem (e.g. a glass of coke would be in the bag within 5 mins, so seemed pointless drinking it!).

I soon got into routines and went back to work full time after 4 months (although it actually took 9 months to feel genuinely well and fit again, but I’d been extremely run down and Crohns ill, which is why my ileo was an emergency job).

Finding places to change a bag out and about was never a problem, but I already had a disabled toilet key. You do need to be very aware of where your nearest disabled loo is, you need sink facilities.

Cons:
My ileostomy was high-output which meant I had to take a LOT of Immodium a day (32 tablets) to control it. I also had issues with low magnesium because of this and had an emergency infusion on UK holiday as I was having heart cramps 😱. You really need to listen to your body and act if anything seems different.

Due to the high output and inability to drink volumes of anything, I had to drink 1l of Dioralyte a day (easy enough when made up with blackcurrant juice and sipped during the day).

Again, due to the high output, I couldn’t go longer than 3hrs overnight reliably without emptying my bag, so I had to set my alarm at 3am every night (and ended up going to bed later at midnight as a result, getting up at 6). Because I was working full time I was really exhausted.

Overnight I occasionally had leaks. You get used to cleaning yourself up and fitting a new bag whilst half asleep within 5mins lol.

I couldn’t wear some of my jeans or work teousers with a bag but I just used this as an excuse to go shopping. Tunics and stretchy leggings became my friends (though Matalan stretchy skinny jeans were fine over the bag). If you didn’t know I had a stoma, you wouldnt have guessed.

Reversal:
I considered keeping the stoma, but wanted at least a shot of being stoma free. Since the second op (and being on Humira) at 50 years old I am the most well and fittest I’ve EVER been in my life. I run (did C25K last year and went from there, doing a half marathon later this year) I horse ride and am back to all previous activities.

Would I have another stoma? If necessary, absolutely yes. The fear is far worse than the reality. I’d hope that another one wouldn’t be so high output though.

Asura what meds have you been given to control your Crohns? Infliximab and (especially) Humira have been game changers for me. There are other biologics which many are achieving remission with, too.

Thank you all so much for your replies!

Molly I was on infliximab for a year then had to stop because I was pregnant, apparently because I've already had it then stopped it won't work again. It's also quite impractical with two small children and having to be in hospital for treatment.

Ivor and puppy this is what I'm hoping for if I did have it! I truly think I could manage bag changes better than running to the loo 100 times a day.

Gibbon thank you so much, that's incredibly useful info! Humira is the next thing to try once my youngest stops breastfeeding (soon, all going well). My regular meds are Balsalaside and Azathioprine but I've been in a horrible cycle of having to take prednisolone during flares for years. I hate the steroids, but when I was pregnant and breastfeeding it's all I could take, before that the doctors just didn't care enough to change it (and I didn't know enough!). I was referred to my current consultant when I first became pregnant and she's been brilliant.

For the last 10 years I've not been in remission for more than a couple of months at a time and the flares last considerably longer, I'm willing to do whatever it takes to change that!

gobbin Sorry! My spellcheck changed your name to Gibbon!

I have an ileostomy too, though mine is for FAP/bowel cancer. I previously had an ileoanal pouch with various complications. The ileostomy is so much easier.

I have an ileostomy for crohns mine was done in an emergency though, its not been too bad having it except for some itchiness i get sometimes which tbh is annoying but its not all the time or that would seriously suck, id prefer not to have it though but looks like mine is gonna be permanent,, i only got it last september ,but i had complications with my stoma so its not turned out perfect but i was very ill at the time so this is maybe why, if your not in such bad health you less likely to have complications , But i know you just want to get better an the stoma could give you a long time with no crohns symptoms ect it may come back though,, thing about surgery is that you cant go back if they remove your colon,, maybe you could just have your ileostomy made temporary so to divert the waste so it doesnt pass thru the colon anymore but you still have the colon and that way you can test out having a stoma and if you hated it you can go back to normal it wont be permanent , maybe thats what your thinking anyway, less drastic option,,

I had an ileostomy as an emergency after my first bad Crohn's attack. At the time it was thought to be UC as it was confined to my colon. I had it reversed a year later and had about 5 years of good health after the initial settling in period with the ileo-anal pouch. I developed some serious problems after that - constant pouchitis, fissures, a fistula and to top it all, piles. Things eventually settled after steroids and azathioprine, which I am still taking after 10 years. Despite this, my fear throughout the years has been that I would have to have a stoma again. I can't tell you how disgusting I found it and how it affected my self-esteem and sexuality. It farted, it leaked and it smelled. There's good advice above about finding out about a temporary stoma to try to allow the colon to heal a little and rest. You could then find out if it worked for you better than your current situation.

I had an ileostomy 3 weeks ago as an emergency measure (have Crohns, thought it was a flare up but turned out to be toxic megacolon, came close to perforating) and I thought having a bag would be awful. Early days but it’s really not too bad and I hope it can be reversed in 6 months. Talk to your consultant, you sound in such despair surely they will come up with some suggestion for you.

As an aside to gobbin what recovery did your reversal entail?

MintyChops the reversal surgery was much simpler and the plan was to be out of hospital after 5 days. I had complications though (ileus, a haematoma and wound fistula) which meant I was in for 5 weeks and needed TPN. Bounced back very quickly though and was back in work after 10 weeks from op date.

The wound is left partially open (small penny sized hole) and packed so that it heals from inside out. My scar is now thin and indents a bit since 2015. PM if you like.