Even though life with an ostomy has been great, there can still be issues. Having an ostomy is not a cure for IBD. I don’t want to worry or alarm anyone with an ostomy, but there is a small chance that a minor complication may arise. Wound Care Advisor did a great post about stoma complications that you can read.
Let’s go back to February 2015, about 7 months post ostomy. I was starting to have leaks all the time, occasionally it happens, but I could barely go anywhere, and on top of that I was having a bit of a flare-up. Not a fun time. I was supposed to run a half marathon around that time and I ended up dropping out and giving my spot away.
I assumed the many bag leaks were due to the flare. A higher output, especially a more liquid formed stool, can compromise your seal. At one point, as I was cleaning my stoma and I noticed it looked smaller. It was practically beneath the skin, which makes it impossible to put a secure seal on. For the record, a normal stoma protrudes about 2 – 2.5cm above the skin. A quick google search confirmed (AND a trip to my surgeon) that I had a retracted stoma.
A retracted stoma is usually caused by obesity, a significant change in weight, tension of the intestine, poor stoma placement or a thick abdominal wall. We weren’t really sure what caused mine, it had nothing to do with my weight.
My surgeon sent me to a wound care nurse. The first option is never surgery, you must exhaust all other avenues first. The wound care nurse was very helpful, however, didn’t really provide me with any new tricks. I was already doing everything that one could in that situation. Thanks, friends on twitter! However, I don’t want to discredit her, please don’t miss an opportunity to speak to a healthcare provider over advice you find online.
I spoke to Hollister and they sent me a bunch of different wafers to try out. There are different cuts and shapes that are designed for smaller/retracted stomas that can help “push” it out. I always use a convex wafer since my stoma was small post-op. I tried different rings, paste, anything and everything I could get my hand on. I was a mad scientist of ostomy supplies.
Changing your bag too often can irritate your skin. Just think, you are pulling off the adhesive from your skin, it’s going to do some damage. My skin is sensitive, so it wasn’t long before it was irritated. Problems on top of problems because now it is impossible to put a new bag on. I would use a prescription ointment (Which is a big no-no, your wafer will not stay on), dab it down. Then apply stoma powder to absorb the ointment, remove the excess powder, followed by a skin barrier prep to cover the powder. This would allow me to get the bag to stay on for a day or two, enough time to let the ointment heal my poor frail skin.
It was a nightmare, I would honestly hold the bag down when I felt output coming out. I remember being at a lunch meeting and worried about a leak. It was mentally exhausting. I retreated from public life for a bit, why would I risk a leak out in public. I would go to work and then home, which is my typical behavior when I’m sick (or trying to save money).
After about 6 weeks I went back to my surgeon. He had hoped that the stoma would protrude on its own, which is the case for most people suffering from a retracted stoma. Since my stoma failed to pop back out, I had to undergo another surgery. Groan. The good news was that this would be a minor surgery, two days in the hospital top with no major incision.
A month later I was preparing for my fifth surgery. I had to do the usual pre-op check (blood work, EKG, chest x-ray) and a bowel prep (I did the Miralax prep). My surgery was early in the morning on a Thursday in May 2015 and I was out by Saturday afternoon. I didn’t even need pain meds for home, it was no big deal. Well, it was surgery, so kind of a big deal, but the ordeal itself was nothing.
Following surgery, my stoma was HUGE but went down because the enlarged size was due to post-op swelling. Life is so much better when you can trust your ostomy, you can go and actually have a life.
If you have any questions about retracted stomas hit me up!