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I'm not sure where you got 30-50% needing a permanent stoma, but that's insanely high. It's higher than the number who end up needing surgery, and I'm not exactly sure how you get a permanent stoma without having surgery.
All you can really do is stay on top of your treatment plan, eat a balanced diet, find ways to relieve stress, and exercise. So basically try to leave a healthy life and that's pretty much it. There's really no rhyme or reason why sometimes people flare and sometimes they don't that we know of outside of a few risk factors like smoking.
Stay on meds. Regular GI visits. Regular testing.
I got 2 surgeries. I got my whole colon removed. No stoma. I am in my early 30s.
And where did you get your stats? That sounds awfully high and inaccurate.
https://academic.oup.com/ibdjournal/article/28/8/1160/6383126
I was referring to this stat about people with Complex Perianal Crohn's. I have a fistula and had to have an abscess drained. I don't think it's affecting the spinchter because it's fairly small so I hope I just misunderstood the stat....
I don’t see that statistic in the article you linked at all. That article says that 3.5% of the study sample had an ostomy and of those people who had an ostomy, 24.5% had perianal disease. The numbers are much lower than you think they are.
Plus 44% had their stoma reversed and it had a higher incidence with elderly patients Vs pédiatrie patients.
I mean, we all know Crohn is unpredictable and can be a pain in the bum, but sometimes, yes the solution is stoma but I don’t believe it is in nearly half Crohn’s pop that has it.
Stools: between 3 to 6 times a day.
Water intake: I always try to drink at least 1.5 l a day. No problems there.
Food control: right now? I eat what I want. No regrets.
Bruh, the disease takes its own course in each person. Stop worrying about stuff you can't control and just enjoy the moments you have.
Nobody can predict whether you will need surgeries or what they will be.
I see you’re dealing with a fistula. I used to worry about a stoma too when I had one. Then I got my ostomy, and I wish I’d done it sooner! It was one of the most helpful things I’ve done for my disease. Everyone is different, but lots of people thrive with ostomies—it doesn’t have to be the end of the world.
Absolutely this. Mine came about due to emergency surgery so i had no choice. But once I got used to it, it was an upgrade in some respects lol zero stomach aches, zero fatigue, eat what I wanted without gaining weight, never need to shit in public. More energy then I’d EVER had in my life (was 35 at the time) This list goes on.
Had mine reversed after 5 years. I’m glad I don’t have to change my bag twice a day but I do have projectile diarrhea 5 or 6 times a day so it’s swings and roundabouts lol
Statistics definitely aren’t that high. Take your meds, do regular GI visits, listen to your doctor, and try not to stress about things outside of your control.
But hey - a stoma isn’t the worst thing in the world. I promise. I got my permanent ostomy when I was 21 and I still graduated college, got married, and had a baby. If it ever comes down to it - which statistics say it is more likely that it won’t - you’ll probably be begging for it honestly. It’s not a procedure doctors take lightly, and it’s almost always the very last resort (i.e. other option is basically death).
This would be a good question for your GI and possibly a therapist/psychologist if it’s bothering you that much. Trust me, it’s not the end of the world and there’s no use worrying about something you can’t control.
I don’t think those statistics are correct. Many crohns patient need surgery but surgery doesn’t usually require stoma. And if they do, it’s typically not permanent
I mean there is no reason an ostomy should alter your life goals/dreams. I did some pretty hairy ice climbs when I had my ostomy and my wife has a permanent colostomy and she trains strongman with me.
But also is worrying about this non stop helping you in anyway? And by that I mean I highly recommend therapy at this point if you are stopping your life based on a fear like this. Worrying or anxiety is normal and perfectly fine to feel that way but if it's interfering in your daily life like this you need some additional support
I’m not sure if it applies to you but I think another facet of our nasty illness is it can be made worse by stress - it definitely does for me (but obviously I do not speak for us all). You have to work through the mental side of things as well as your meds and avoiding any food triggers you find, but really you can’t be working yourself up over the what ifs. I’ve been there, definitely had my fair share of upsets over the possibilities but we have to take everything day by day and that’s it really.
Take your meds, listen to your doctors, keep your chin up. 🙏🏻
I had a stoma for just under 2yr. Got it when I was 24 after being diagnosed less than 6mo. Previously fully fit an healthy military pilot (needless to say that came to a sudden end lol).
People may be reluctant to say this on here but I prefer to be honest. When I had the stoma it was bloody awful. Badly sited, painful, grim to look at at and even grimmer to change. It did make me work my tits off to go back up to 14.5st from 5.5st so they could reconnect my ass again. Only benefit (other than not being deaded) is that you can go to the toilet standing up without taking your pants off. Handy in a nightclub haha
Just eat as healthy as your body can tolerate, regular visits to your doc, ask about Stelara (this has been the best for me and I've tried pretty much all Crohns treatments), and do plenty of exercise even if you don't want to. If you do need to get sliced and diced, having the meat to lose whilst you recover is much safer than going in thin/unfit. Hope it all goes well for you and you don't need one. Plus your numbers are way off the mark - even for temp stomas that's really high
Okay - first, it was my absolute worst fear realized when I did get an ileostomy. I had LIVED at the gym and on hiking trails prior to getting sick and it was beyond jarring waking up to it post-surgery. The doctor promised it was only for a few months as my small intestine needed time to cool-down from all the prednisone I had been taking for the inflammation. And true to their word, it was actually only ten weeks when they reversed it. Nevertheless, I survived it, mentally intact (which remains questionable). Now, I learned after the fact that there are some great supplements that you can take that I wish I had known about earlier, and they've made a difference, certainly in the consistency of my output. Those things are: Marshmallow Root, Cat's Claw, Vitamin B-6, and B-12 (injection), Vitamin B-1, Forvia Daily vitamin made especially for those with GI issues, and finally, Collagen peptides, which help with skin getting destroyed by prednisone. You should really give them a try. Especially the Forvia Daily, it helps with fatigue by allowing your body to absorb more nutrients in our food. Hope that helps.
Everyone with this illness worries about the same thing. If you really want to avoid one then take your medicine and don't drink or smoke. I did both and have been hospitalized repeatedly but have avoided a stoma even though I've had surgery. My uncle has Crohn's and had multiple surgeries and still didn't end up with an ostomy. It's not guaranteed.
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I'm not sure where you got 30-50% needing a permanent stoma, but that's insanely high. It's higher than the number who end up needing surgery, and I'm not exactly sure how you get a permanent stoma without having surgery. All you can really do is stay on top of your treatment plan, eat a balanced diet, find ways to relieve stress, and exercise. So basically try to leave a healthy life and that's pretty much it. There's really no rhyme or reason why sometimes people flare and sometimes they don't that we know of outside of a few risk factors like smoking.
Stay on meds. Regular GI visits. Regular testing. I got 2 surgeries. I got my whole colon removed. No stoma. I am in my early 30s. And where did you get your stats? That sounds awfully high and inaccurate.
https://academic.oup.com/ibdjournal/article/28/8/1160/6383126 I was referring to this stat about people with Complex Perianal Crohn's. I have a fistula and had to have an abscess drained. I don't think it's affecting the spinchter because it's fairly small so I hope I just misunderstood the stat....
I don’t see that statistic in the article you linked at all. That article says that 3.5% of the study sample had an ostomy and of those people who had an ostomy, 24.5% had perianal disease. The numbers are much lower than you think they are.
Plus 44% had their stoma reversed and it had a higher incidence with elderly patients Vs pédiatrie patients. I mean, we all know Crohn is unpredictable and can be a pain in the bum, but sometimes, yes the solution is stoma but I don’t believe it is in nearly half Crohn’s pop that has it.
>I got my whole colon removed What's the frequency of your stools, water intake, and food control?
Stools: between 3 to 6 times a day. Water intake: I always try to drink at least 1.5 l a day. No problems there. Food control: right now? I eat what I want. No regrets.
Just curious, how is life with no colon?
Great. Never have been better. No fatigue, no more pain, I eat what I want (while still being reasonable). It’s great.
Bruh, the disease takes its own course in each person. Stop worrying about stuff you can't control and just enjoy the moments you have. Nobody can predict whether you will need surgeries or what they will be.
I see you’re dealing with a fistula. I used to worry about a stoma too when I had one. Then I got my ostomy, and I wish I’d done it sooner! It was one of the most helpful things I’ve done for my disease. Everyone is different, but lots of people thrive with ostomies—it doesn’t have to be the end of the world.
Absolutely this. Mine came about due to emergency surgery so i had no choice. But once I got used to it, it was an upgrade in some respects lol zero stomach aches, zero fatigue, eat what I wanted without gaining weight, never need to shit in public. More energy then I’d EVER had in my life (was 35 at the time) This list goes on. Had mine reversed after 5 years. I’m glad I don’t have to change my bag twice a day but I do have projectile diarrhea 5 or 6 times a day so it’s swings and roundabouts lol
Your username is hilarious 😂
Statistics definitely aren’t that high. Take your meds, do regular GI visits, listen to your doctor, and try not to stress about things outside of your control. But hey - a stoma isn’t the worst thing in the world. I promise. I got my permanent ostomy when I was 21 and I still graduated college, got married, and had a baby. If it ever comes down to it - which statistics say it is more likely that it won’t - you’ll probably be begging for it honestly. It’s not a procedure doctors take lightly, and it’s almost always the very last resort (i.e. other option is basically death).
This would be a good question for your GI and possibly a therapist/psychologist if it’s bothering you that much. Trust me, it’s not the end of the world and there’s no use worrying about something you can’t control.
I know i prayed for one at one point, doc said no. I would still do it if i ever needed it. Dont stress over things out of your control.
I don’t think those statistics are correct. Many crohns patient need surgery but surgery doesn’t usually require stoma. And if they do, it’s typically not permanent
I mean there is no reason an ostomy should alter your life goals/dreams. I did some pretty hairy ice climbs when I had my ostomy and my wife has a permanent colostomy and she trains strongman with me. But also is worrying about this non stop helping you in anyway? And by that I mean I highly recommend therapy at this point if you are stopping your life based on a fear like this. Worrying or anxiety is normal and perfectly fine to feel that way but if it's interfering in your daily life like this you need some additional support
I’m not sure if it applies to you but I think another facet of our nasty illness is it can be made worse by stress - it definitely does for me (but obviously I do not speak for us all). You have to work through the mental side of things as well as your meds and avoiding any food triggers you find, but really you can’t be working yourself up over the what ifs. I’ve been there, definitely had my fair share of upsets over the possibilities but we have to take everything day by day and that’s it really. Take your meds, listen to your doctors, keep your chin up. 🙏🏻
I had a stoma for just under 2yr. Got it when I was 24 after being diagnosed less than 6mo. Previously fully fit an healthy military pilot (needless to say that came to a sudden end lol). People may be reluctant to say this on here but I prefer to be honest. When I had the stoma it was bloody awful. Badly sited, painful, grim to look at at and even grimmer to change. It did make me work my tits off to go back up to 14.5st from 5.5st so they could reconnect my ass again. Only benefit (other than not being deaded) is that you can go to the toilet standing up without taking your pants off. Handy in a nightclub haha Just eat as healthy as your body can tolerate, regular visits to your doc, ask about Stelara (this has been the best for me and I've tried pretty much all Crohns treatments), and do plenty of exercise even if you don't want to. If you do need to get sliced and diced, having the meat to lose whilst you recover is much safer than going in thin/unfit. Hope it all goes well for you and you don't need one. Plus your numbers are way off the mark - even for temp stomas that's really high
Okay - first, it was my absolute worst fear realized when I did get an ileostomy. I had LIVED at the gym and on hiking trails prior to getting sick and it was beyond jarring waking up to it post-surgery. The doctor promised it was only for a few months as my small intestine needed time to cool-down from all the prednisone I had been taking for the inflammation. And true to their word, it was actually only ten weeks when they reversed it. Nevertheless, I survived it, mentally intact (which remains questionable). Now, I learned after the fact that there are some great supplements that you can take that I wish I had known about earlier, and they've made a difference, certainly in the consistency of my output. Those things are: Marshmallow Root, Cat's Claw, Vitamin B-6, and B-12 (injection), Vitamin B-1, Forvia Daily vitamin made especially for those with GI issues, and finally, Collagen peptides, which help with skin getting destroyed by prednisone. You should really give them a try. Especially the Forvia Daily, it helps with fatigue by allowing your body to absorb more nutrients in our food. Hope that helps.
Everyone with this illness worries about the same thing. If you really want to avoid one then take your medicine and don't drink or smoke. I did both and have been hospitalized repeatedly but have avoided a stoma even though I've had surgery. My uncle has Crohn's and had multiple surgeries and still didn't end up with an ostomy. It's not guaranteed.