Every year, on the first weekend in October, is a time for connection, inspiration, and reflection for the ostomy community. Whether virtually or in person, we hope you join in for Ostomy Awareness Day on October 7, 2023.
This does sound like it could be a prolapse. Does it still look like the same stoma only swollen, or does it look like some bowel tissue has actually come to the surface that wasn't there before?Like Alex says, your stoma will increase and decrease in size throughout the day, but if it's just bigger all the time, could be a prolapse. If it isn't affecting your output, that's good, but it could get worse. Good idea to have your ostomy nurse take a look.
Thanks it looks like same stoma just bigger and yes it is still working fine. This could be the new normal but I will ask my surgeon next week about the prolaspe possibility just to be on the safe side. This is all new to me so a learning experience for sure
Mine started life round, protruding about a half inch. Then 4 weeks later it was a beast. Now it's oval shaped and protrudes an inch and a half. Plus I developed a hernia that pushes the stoma to the side a little. Output has remained good. No pain. I showed it to my surgeons, and stoma nurse. They all said:If it works properly, you have no pain, your appliance fits and seals well...don't worry about it and get a support belt. A little prolapse is far better than retraction. I searched the internet for prolapse and hernia pictures. HELLO!I was stunned. Some poor folk have huge hernias and prolapse. Take care of your parastomal skin and keep an eye on the stoma. Any pain or change in color... See a Stoma nurse or doctor ASAP.
Good advice. I can imagine what those pictures of prolapses look like, don't need to look. When I had my colostomy (pre ileostomy), mine prolapsed about five inches! I've never been so freaked in my life!
No, it did not go in by itself!It required a trip to the ER, via water-taxi ambulance as I was on a rather isolated island at the time. They had to put me under twice to get it back in, but they finally did. It was only a matter of time before it happened again, so I had another surgery, this time got my ileostomy, which works perfectly, no blockages or prolapses and it's been two years. I can't say I ever learned to love my stoma when I had the colostomy, because it caused me nothing but grief, but I do love my ileo stoma. You will get there, but it's natural to feel what you are feeling now. Hang in there.
I'm perplexed:I'm assuming there were other issues requiring you to get an Ileostomy, and not just because of the OMG prolapse. I sure as hell hope that doesn't happen to me. Thanks for sharing your story.
Hi Dan,Yeah, sorry, I wasn't very clear was I?There were lots of reasons why I ended up with an ileostomy, the prolapse was the icing on the cake. I got my colostomy due to a bowel perforation which in turn was caused by years of chronic constipation. Turns out my bowel didn't work any better with the ostomy than before. It was due to colonic inertia, and I spent almost a year in and out of hospital with blockages. By the time I had the prolapse I think the decision had already been made to give me the ileostomy. But, to be clear, living with the probability of ongoing prolapses like the one I had, would have been enough in itself to make me go ahead with the surgery. It was extremely painful and stopped all output. I was very close to having to have surgery just to make it go back in. I wouldn't wish that on anyone. My life since the ileo has been great.
Thanks Terry ! I'm still new to the stoma game. Now 7 months post op and still learning how to deal with it both physically and emotionally. I have access to stoma nurses but they are always reticent to provide advice or care. When I visit, they quickly pull off my bag/wafer, take a quick peek, then install a new one and send me on my way. I'm there maybe 10 minutes. I've learned more on this website than anything else. Always better to hear from others who have "been there, done that."
This website has been a life saver for me too, in many ways. I'm sorry to hear you aren't getting much help from ostomy nurses. It seems strange they would be hesitant to give advice, (isn't that what they are there for?) but I have learned that not all ostomy nurses are created equal either!I have a favourite one who seems really knowledgeable and then I've seen some who have given me advice that has turned out to be wrong. Everything you read on this site won't be right either, but then we aren't claiming to be professionals!The best thing to keep in mind is that everyone is different and that what works for one won't necessarily work for another.