Hello
I have a teenage son who has just 12 cm of jejunum leading to a high output (3 litres a day) stoma, due to major surgery last year. The output is so high he has to use urostomy pouches with a catheter bag attached, which he has to carry everywhere in a case to conceal it. Without it he would be going to the toilet to empty the pouch every 15 minutes. Before this he had an ileostomy for 4 years, so he was very experienced in caring for a stoma and continues to do his stoma care himself. However, he is finding the high output stoma an immense challenge to care for compared to the ileostomy, as the output is so acidic and the output is also almost continuous. He generally keeps the skin around it in good condition but only by applying Sudocrem for at least 4 hours a day with the pouch off to soothe the acid burnt narrow ring which arises daily between the stoma and the edge of the base plate hole.
After this, he then takes ages to apply two coats of barrier spray and wait for it to dry, and then takes ages waiting for a gap in output to try to place the pouch successfully.
Leaks and more extended areas of burnt skin are generally avoided by his careful pouch placement and skin care, but, when they happen, they cause a vicious circle of the base plate not sticking due to the weeping skin, causing more leaking, etc etc.
Several hours of stoma care a day is hugely impacting his education and ability to lead any form of normal life and we are desperate to get products which cause less burn, or quicker healing of burnt skin, as this would reduce daily stoma care time. The local stoma nurse is very kind, but says that resolving problems is trial and error and different things work for different people. I get this to some extent, but I was hoping for product recommendations from her which are known to work for a liquid acidic high output stoma and protect the skin around it.
I therefore thought I would try an appeal for advice to those of you out there managing a similar type of stoma and output. I have seen various tips and products recommended on this and other forums, and wonder if anyone with a short bowel and stoma can recommend any of the following suggestions I have come across, or suggest others, as I am reluctant for my son to try some without more detailed guidance:
Thank you!
Hi Fushia21.
Your Son sounds remarkable. He has a lot to deal with just getting through his teenage years.
I am new to ileostomy however when I was released from hospital my skin around the stoma was red raw and the stoma looked an odd shape . The Stoma nurses gave me six eakin slims. They’re like putty but the don’t stick to the stoma so I couldn’t damage it and convex bags. When I ran out the burning started again and the skin was bright red.
Thankfully now I have enough for every change. I leave mine round then pull out to a slightly smaller shape than the cut hole of the bag. Then place it over stoma closely it doesn’t really stick it cushions and protects the skin giving a barrier and helps with leakage. Then on with the bag. My skin now looks healthy and I don’t seem to have the burning sensation.
I really hope that your son finds these helpful. With very best wishes. Artsie
Ann
Hi Fushia
i am very new to my ileostomy so my experience is limited. The slims aren’t glue like more putty with a sticky feel.
I would imagine that the size of the stoma might have an affect it’s efficiency on leakage.
Mine works similar to a washer mainly around the base of my stoma the convex bag pushes it tight as my stoma is not very high.I wear a belt attached to the bag and big pants to give me more security.
I hope that your son can find a better way to allow him some freedom from worrying about managing his output soon.
with best wishes. Artsie.
Ann
