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 was 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 ilieo. 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 crohns was causing blockages, my new stoma works great, but it was full open surgery due to having to work thru other scar tissue from previous surgeries.
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 reasons for this and also to see what he is dealing with as I think I have had 2 colostomy's 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 worse part along with obviously major risks which I am aware of.
Hi Spicy no that wouldnt be changed to an ilieo., and yeah i spent 11 days in the hos. as i also had an A-FIB attack after the surgery and was kept in ICU but my wife brought my laptop so i wouldnt 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 time i landed in nurses hands, i had many surgries at that time till 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 delt with gas like no other as far as other 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 till 2009 before it happen then i got sick my instestine died and tied into a knot. so it took a long time of telling the quacks i have it thru my whole intestine they didnt believe me till they did some biopsies, and what do you know i was right. cause they where always tring to do a reversal so anyways i have had 2 resection surgeries since first one i did stay a week, the second was just an in and out cause i got grandual around my stoma and they got bad enough to were i had to have them removed. so now i have been able to finally wear my bag longer then i have ever in the past 13 years as long as you understand they cant fix anything with a warranty cause they 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 too 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 its spring time and i have mommy to do list. just remeber that normal is a setting on the washing mashine nothing in the world is normal here is a 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 dont fit in thier 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 dont then say this isnt 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 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 waffers, i used hollister for years they were built for a flat belly which i dont have. it didnt matter which company i went thru till recently coloplast came out with one that fits a rounder belly seals alot better if i add sray glue and rings i can last few days if weather is good and i dont 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
