Positive stoma / ileostomy stories please

[Squeamishandworried]

I am having an ileostomy in a couple of weeks, due to ulcerative colitis and some dodgy looking cells. I’m trying to be positive about being symptom free (this year has been bad after decades of good health) and preventing bowel cancer, but I’m still worried about various aspects of life with a stoma. I would be really grateful of anyone could tell me any positive stories. I’m finding it hard not to focus on the awful stories of leaks or sudden noisy fart sounds!

DS has had a stoma due to Crohns since he was 10. Its fine, way better than he was before. And he can manage it well, so don't worry too much about leaks. And as the rest of the house has IBS, he's not the only noisy one in the house! Leaks happen, but are easy enough to handle if you keep supplies and change of clothes with you.
Make sure you get a colorectal nursing team lined up, they are a great support for me and DS.

I have a Urostomy and an ileostomy due to short bowel syndrome and although it was hard it the start, it’s still way better than I was before.
I agree support from the stoma nurse is a must, they will help with finding the right bags for you if you have any issues or even clothing items such as waist bands etc.
I have high output ileostomy but even with that I find leaks are not as frequent as you’d imagine and are well manageable.
I still manage to wear everything I did before and it’s not noticeable to others if you’re concerned about others noticing although I find the comfizz waistbands a godsend with low jeans.

Thank you both. I’m not planning on telling many people at all, just like I didn’t about having Ulcerative Colitis until this year when I was in hospital. I really am so worried about leaks, and also any noise when watching a school assembly or something. I never had an accident outside the home with UC. I guess I’ll learn lots from the stoma nurse, I’ve been lucky to meet one of the team already and she was very nice. Although she said I couldn’t drink as much water with a stoma. I get headaches really easily if I don’t so I hope that won’t be the case.

Had my second ileostomy in 2016 - this time I chose to have it and don’t regret it for a second as it’s given me my life back. I get leaks , I have kidney issues linked (rare) but they would have to drag me kicking and screaming still to reverse it

just to add I have never heard of people being told they can’t drink as much water , yes it’s important to keep an eye on electrolytes but unless you’re dehydrated already then drinking water won’t dilute

So pleased to hear I shouldn’t have to limit my water intake (as long as not disrupting electrolytes). Does the worry of either leaks or sounds prevent you from doing stuff you would otherwise have wanted to do? I

I've looked after so many people with a stoma and not a single one who has had it for crohns or UC has ever told me they regretted it. Most have said that it gave them their life back. Have you seen Hannah Witton? She's a YouTuber in her 30s with a stoma and does a lot of content on it.

I don’t tend to notice a lot of sounds tbh and when I do hear them it’s nothing worse than a tummy rumbling and no the leaks thing is usually overnight - I don’t even carry spare bags etc with me now as it’s been so long since I leaked while out and about. I’ve had loads of holidays , been to Glastonbury and other festivals since I got Colin and he’s just part of life now for me

I got mine 16 years ago and have never had any problems with it and usually forget it's there and that other people don't have one. Only leaks I had was when I was pregnant and had to change the size, once I discovered that was the problem it was fine for the rest of the pregnancy. Leaks also tend to go under the flange and are slow so you have time to get changed. It's not stopped me doing anything except wearing a bikini. I decided not to get the reconstruction surgery and people were shocked but I thought my quality of life would go down having to run to a toilet again. Don't regret making it permanent at all.

Re:sound I can feel when it's about to happen, like a pressure feeling and can muffle the sound by putting my hand over it so that hasn't been a problem.

My FIL had one for UC, it was life changing for him, all his symptoms went and he didn't have to run his life around his bowels anymore.

This is so reassuring, thank you all. I’ve searched online for stoma stories but just as with IBD stories, people are more commonly talking about the difficult bits when I’m hoping that I’ll have a normal life feeling healthier. Biologic medicines kept me symptom free for years but it will be nice to not be on strong immunosuppressants anymore and also I’ve had so many steroids this year.

Mine is very likely to be permanent due to cell changes, and I want to approach it in this way.

Hi Op. Close family member has one, also a close friend. One for cancer, one for UC. Both manage it fine. My young friend with UC refuses to have it reversed...

Hi, I got mine last month and while I'm still getting used to everything I can already tell that it was the right decision and I don't regret it at all. I'm totally new so can't give long term advice but there are a massive list of positives if you've had a painful health condition that's been dominating your life.

Just to mention I help to run an ileostomy support group on Facebook - might be useful

https://www.facebook.com/groups/CrohnsandUCDramaFree/?ref=share_group_link

Bumping!
I’m glad I started the thread as it’s made me less worried. Thank you.

I have a stoma due to CD and honestly it’s been the best thing I did. No more constant worrying about finding a toilet, yes it’s odd to pass wind through your stomach but goodness I’d take that over bowel accidents any day.

I am squeamish and it did take me a while to get used to touching it but I don’t even think about it now. Don’t worry, we will all support you! A lot of my friends, who I didn’t know when I had the operation, don’t even know I’ve got it.

So much reassurance thank you! And Melissa Witton is great to watch, love it that most of her videos are nothing to do with the stoma and she is living a full, fun life. When she does talk about it she’s so open and matter of fact.

One of the first things the stoma nurse said to me was give it a name. That way it won’t seem so alien. I felt stupid naming it but Simon the Stoma did actually stay!

I had the operation 6 weeks ago. It was open surgery and took over 5 hours and recovery hasn’t been fun, though I’m feeling more myself now. The stoma bag is okay really, I‘m not particularly worried about sounds or leaks now. I am very worried about getting a hernia though. There was a mistake with my prescription stealth belt order and it might not arrive until December. My tummy is quite misshapen now and I wish it had been laparoscopic surgery instead.

I look after people who have had operations to form stoma. They get used to it really quickly.
The coloplast website was really helpful for me as a carer.

@Squeamishandworried thank you for updating.
Well done on coping. Glad you're feeling better.
Long may it continue.

Thanks@Rollinghill , I'll have a look at that site.

How are you getting on with it now OP? My husband may need one so I'm trying to read up about it as much as I can. He's in his 30s and it currently feels terrifying for him.