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30-year old Ileostomy: Anyone had an ileostomy for decades?
I have had my ileostomy for over 30 years. Anyone out there who has had an ileostomy for that many years? And if so, any problems? My stoma looks kind of scuffed. Lost it's outer "membrane" in some areas. Not sure if a stoma has a membrane. It bleeds a bit. Not a lot. Just when I dab at it when cleaning. I need to be more careful when cleaning, maybe.
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I've had my ileostomy for 3 years. My stoma bleeds a bit around the sides when I'm cleaning it too. It's fairly normal.
In all those years have you ever had a blockage or any surgeries?
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1 Reaction@katey122
Thank you for your reply. 🙂
Yes, I've gone to the ER I think, around 3 times. When I couldn't help myself at home. Only, for the blockage to start to move by the time I got in an ER room. I blame myself as I ate popcorn, coconut macaroons all within a few days of each other. Can't do that. Needed to hydrate more often. 8, 8-ounces of water a day. 64 ozs. total. No surgeries. And no skin issues other than a bit of irritations from so much humidity in the summer. I use a lot of Nystatin Powder.
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I have had my Ileostomy 45 years, and only once had a little issue with a blockage after eating several apples, it did go through on its own after awhile.
As for bleeding I also have that when a little rough cleaning around it,
I eat popcorn, nuts, etc and do so in moderation, and my go to saying is chew- chew and drink plenty of liquids along with and after.
Great conversation
Thanks
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1 ReactionI've had an ileostomy for 24 years. I had a stoma revision 10 years ago because of a recurrence of Crohn's disease.
It's pretty normal for it to bleed a little when you change your appliance.
If you are concerned about the appearance of your stoma, I would have a WOCN look at it. Depending on why you got the stoma, I would suggest following up with a GI. My stoma's appearance changed when my Crohn's flared up. It got little sores on is and became more rigid.
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1 ReactionMy colon was removed due to Ulcerative Colitis, not Crohn's. I do not get bleeding from the inside of my stoma.
I also have had my ileostomy for 30 years. I have only 3.5 meters of small bowel.
I too no matter how gentle I am cleaning my ileostomy get a little blood from it. I thought this was normal?
I also tend to get over granulation (proud flesh) which I need to burn off with a silver nitrate stick, as it bleeds like a pig, is very painful, and it will grow if I do not use silver nitrate.
Recently my peristomal skin has been very badly excoriated and it needs constant watching which is why I change my appliance every four days.
Because I forgot to add that after having so many operations for bowel obstructions, my gut does not work properly and has dismotily problems. i’ve undergone over 33 laparotomies. I’m at end stage IV access failure. And I will not survive another operation
I am unable to eat solid food as it causes too much pain. I live of 6 200ml Fortsip every day, I used to have a feeding tube but it failed due to my stomach leakage causing my skin around my Mickle Button to become infected, so my surgical specialist had to remove it, even though I used to get my food through it.
This comment is a mistake, I edited my original cooment sorry