I had a colostomy since birth from Hirschsprung's disease which was made permanent, and in 2014 we noticed it started to retract and pull away from the skin... I just recently saw a colorectal surgeon, and it looks like surgery is the only option after all the products used in the past that were a failure.
Can I ask if anybody has had a refashion surgery as this will be my first of my knowledge...
Hi Spicy, I have an ileo, not a colo, but I had resection surgery a few years ago as my stoma was shrinking and the opening was pulled down to skin level causing leaks. But the worst part was internal; the scar tissue from Crohn's was causing blockages. My new stoma works great, but it was full open surgery due to having to work through other scar tissue from previous surgeries.
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I'm sorry you went through that! Glad everything's better now for you. I saw the surgeon and he recommends surgery after waiting 7 years with it pulling in, retracting, and the skin completely open from the actual stoma showing the bowels inside through the gap. I was worried as I have a scan to check if there is any reason for this and also to see what he is dealing with as I think I have had 2 colostomies, one lower down and the one now. So not sure what the deal is with the inside now as he had said about having to move it to the right if needs be. Will that mean having an ileostomy or just the colostomy on the right as I have had this since birth which is 23 years ago so this would be the first kind of surgery. Did you have to stay in also for a few days as my main worry is being with adults as I have the mind of a 14-year-old rather than 23 and I don't look my age so staying in would be the worst part along with obviously major risks which I am aware of.
Hi Spicy, no that wouldn't be changed to an ileo., and yeah, I spent 11 days in the hospital as I also had an A-FIB attack after the surgery and was kept in ICU, but my wife brought my laptop so I wouldn't get bored.
Count me among the crowd who has also had an ostomy revision. As they are called, they started off trying to create a colostomy. Four surgeries later, I had an ileostomy, and they were still trying to salvage some of my large intestine. In all, I've had a total of eight revisions in the first year.
Hello spiceyramen
I was lucky in one way. I also have Hirschsprung's disease. From the time I landed in nurses' hands, I had many surgeries until I was about 5 years old. Then they did a reconnect. They thought it was for the better of the evils, they told my mother. So as I grew up, I dealt with gas like no other. As far as others knew, I was supposed to be as normal as anyone. That was a lie. In 1994, they had to open me up and remove scar tissue, which then I was told I was going to be looking at a bag for my next option. I lasted until 2009 before it happened. Then I got sick, my intestine died and tied into a knot. So it took a long time of telling the quacks I have it through my whole intestine. They didn't believe me until they did some biopsies, and what do you know, I was right. Because they were always trying to do a reversal. So anyways, I have had 2 resection surgeries since the first one. I did stay a week, the second was just an in and out because I got granular around my stoma and they got bad enough to where I had to have them removed. So now I have been able to finally wear my bag longer than I have ever in the past 13 years, as long as you understand they can't fix anything with a warranty because they are still practicing physicians.
OMG thank you so much for posting that. I had my first done in 2000 but they dismissed my mother many times telling her she was just overthinking and tried at one point saying it was asthma. The Dr who performed my operation back then also told my mum similar but told her it could be reversed which was an utter lie. Then I had to have a second stoma formed in 2004 and this is the one now but as I can see the actual stoma further than others can due to the skin coming away and retracting the intestine that wouldn't show looks kinda a blue tinge but not the front of the stoma you would normally see though just the bit that is further back. If that makes sense.
I understand that they cannot reverse it. I just need it to look normal again so I don't have leaks every time a little stool comes out and so the bags fit again properly. I just had my CT but my veins are a mess so I couldn't get the contrasted scan just the non-contrast. So hopefully it will be a simple refashion of the skin.
Sorry, spicy.
I am not always on here now. It's springtime and I have a mommy to-do list. Just remember that normal is a setting on the washing machine. Nothing in the world is normal. Here is the meaning of normal: 'What is the full meaning of normal?
;: conforming to a type, standard, or regular pattern: characterized by that which is considered usual, typical, or routine.'
So then you ask, who is the one person that sets the standards of what normal is and to tell everyone this is normal. I don't fit in their normal box. I have my own normal, not what they think is. So as long as it meets your normal, then all is good. If it doesn't, then say, "This isn't normal."
Thank you for just messaging anyway. I really appreciate the help you have given, and as long as the bags stay attached longer and less leaks, it will be a lot better. I know it would never be classed as normal, but as normal as we can get.
Stay healthy, and if you need any support, I am here now and again for you!
Hi Spicey.
Yes, it took a long time for the leaks to stop for me. But I had all the dips scars interfering with my seals. One of the problems was my wafers. I used Hollister for years. They were built for a flat belly, which I don't have. It didn't matter which company I went through until recently Coloplast came out with one that fits a rounder belly, seals a lot better. If I add spray glue and rings, I can last a few days if the weather is good and I don't twist side to side or bend over to pick things up. I do good like you said. I am here, and if you see me on, send me a message. Talk to you next time.
Take care. Have a good day.
