IBD since 2009 temp ileostomy - Crohn's and Colit...

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IBD since 2009 temp ileostomy

Carli1503 profile image

Hi I have recently ( 24/9) had colon resection surgery due to crohns causing obstruction and full prolapse! I have been given a temp ileostomy for the bowel to heal, has anyone had this surgery due to a rectal prolapse before and know what it will be like once reversed? I must say life with a bag is very emotional.

10 Replies

Hi. So not quite, but when my UC became too aggressive and the drug weren't touching it (after 4 years), I had to have a total collectomy with j-pouch resection. I had an ileostomy to allow it all to heal and like you, I didn't get on with the bags.

I had a reversal, which had complications, so I went back to the ileostomy when they had fixed it all. My second reversal was successful.

Function returned, but years later, I am experiencing UC symptoms again (they've checked for Crohn's in case of original misdiagnosis. During investigative surgery, the surgeon has on two occasions asked whether I had considered switching to an ileostomy - a pretty unpalatable thought, as it was so difficult to live with the first time(s). I am avoiding that as long as possible - even abnormal UC affected bowel and j-pouch function is, for me, better than an ileostomy and colostomy bag.

My specifics were sores around the ileostomy, making the bags hard to stick, ineffective glue, incidences of it coming loose, etc. I had hoped that in nearly ten years, advances in medical technology may have improved the ileostomy experience, so that's my silver lining if I do need to go back to it!

Good luck, stay strong and keep fighting!

Hi Stewart is there any chance you can put a lung on here for your blog? I can't find it. Thanks 👍

Angep profile image
Angep in reply to Angep

Sorry Stewart I meant a link!!! Tut 😂

Hi Carli, I had emergency surgery at the end of march due to my bowel perforating and was diagnosed with Crohn's disease. I have also had UC on 2 occasions quite a number of years ago. I have a colostomy bag now. I had a left sided hemecolectomy forgive the spelling if it's wrong!!! I don't mind my bag, don't get me wrong I'd rather not have it but I'm ok with it. It's leaked a couple of times in bed😬😬and on my very first day back at work which wasn't the best!!! I have to wear a support belt as I have a hernia under my stoma. But I cope with it, I always think things can be worse so I make the best of it. My lung collapsed after my op and that affected me much worse. Not being able to breath frightened me more!! But I do hope it gets easier for you. We have to think at least we are here because of them. My auntie who is 80 had a colostomy bag at the age of 16!!! She now has an illeostomy and I can't imagine how hard it must have been for her. She couldn't have children back then because of it. I myself will have it reversed at some point when I feel ready to deal with surgery again. Please feel free to message me if you need a chat.take care, bye for now.😀

That's all very interesting I must say!! I have on occasions tasted a very unpleasant taste from kettles when having a hot drink!! Quite revolting actually!! I shall try the water and see if it makes any difference to how I'm feeling. Forgive my ignorance but it's 5.39 in the morning as I've got to get up for work but would using a water filter be if any benefit do you think? My main problem at the minute is tiredness. I'm not sure if that's because I had an operation and I'm back at work. My job is quite physical. Thanks for the information.

Before I had my operation at the end of May I had a gastroscopy at the end of April I was told I had gastritis and an ulcer!! So I was given 80mg of omeprozole to take daily. A month later my bowel was perforated!! In your opinion then do you think it's down to just the water then? I spent a lot of time looking into various ideas and treatments after my operation, as to what causes inflammation in our bodies. Dairy came up as very bad. I try to avoid it as much as possible!! Some people go gluten free. It all gets very confusing. It's my day off today so I shall go get the water and try it.

I hope I'm not being a pest, I've looked on Amazon for the silica what dosage should I try?

First positive thing I've noticed is I've used it to make tea!!! And sometimes I get an awful taste and I thought it was the kettle!! Well I've had 3 cups and it tastes really nice. No nasty taste. I don't usually drink that much because of the taste but as I said it's 100per cent better👍Thank you

Angep profile image
Angep in reply to Angep

Yes I did read it, if it is the cause then that's more than shocking what it's doing to people. I just want to stay well and I don't want to go through any of what I've been through ever again so I'm willing to try anything. As long as it didn't harm me. It makes sense about the aluminium. I shall look into it more when I get chance.

Your blog is really interesting and I see that you mentioned the taste of water from the kettle!! If the water was to stop me getting ill again that would be so amazing. I've been trying all kinds of things since my op. I don't have any symptoms since my operation I'm trying my best to keep it that way. I just want to feel as well as I possibly can. I don't feel 100 percent yet but I think going back to work so soon has had a big effect thevtiredness is overwhelming sometimes.so I'm intrigued to see how I feel after a few days and what my output is like.

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