The area around my stoma is one huge mess and has been for months. I am now living with pee pads (dog training pads), baby diapers, and paper towels to hold in the poop because my stoma area will not hold a bag for any longer than an hour.
This situation has been going on since late June 2019, and I am at my wit's end.
I had an ileostomy last October 2018 due to rectal cancer (stage 1) surgery and had few problems with ostomy bags (Coloplast) until I started developing a hernia directly underneath the stoma area. This is where and when the problems began with fitting and leakage. Coloplast one-piece bags were suiting my body well, I had no leakages for the first 3-4 months, then slowly they kept sliding off and I was unable to wear them due to the vinyl flange edges.
Next, I started experimenting with Convatec (different convex styles 1pc. and 2 pc) and because of their fabric type flange edges, they were working much better, yet slowly they began leaking. The more I tried putting stoma bags on, the more my skin was getting irritated. Long story short, it got to the point where a sort of mucus was forming around the stoma area and NO bags were able to stay in place. I am on blood thinners, so, therefore, I am encountering an increase in blood around the area also.
Despite applying Eakin seals, paste or whatever methods - nothing was working. I was becoming bag-resistant and the pee pad situation began.
A wound/ostomy nurse stepped in whom I had consulted with from my hospital surgery stay. She tried the following:
- Asthma inhaler/puffer (steroid to get the swelling down) and applied it each time I was cleaning up my messes
- A MedLine product (5 mg small powder bottle which contains silver) used to clear up the mucus
My stoma was in horrible shape when I turned up at the Emergency in late June and was admitted to the hospital immediately. Where I live, the actual hospital emergency department itself is useless to go for help folks if you have an ostomy problem, as they appear to only depend on a wound/ostomy nurses for help. But it was on a weekday, and as soon as the ostomy nurse saw how dire my stoma situation was, I was admitted. The area was an angry red, bleeding, and about the circular size of a CD disc., confirming that I would be unable to take of this on my own. After 4 days, the swelling did go down, yet it was still difficult for any bags to stay on.
After discharge, I received home care, however, only a few community RPN's RNs are trained in the ostomy area. It was difficult seeking out a qualified home wound nurse.
I tried another product for the surrounding stoma area called Karaya 5 powder made by Hollister. This worked better than the Medline product and the inhaler. The Karaya powder soaked up the mucus, the redness began to decrease, but I repeatedly had to keep applying it after each attempt at a bag change or clean up of my feces mess. Patience was a virtue as it took many days to clear up. I was then able to apply a bag, but unfortunately with short success.
This has been a routine over the summer. I have seen the ostomy nurse three different times at the hospital and even she is stumped. I have now decided to go for a reversal.
The cleanup has left me weary, frustrated and unable to leave my house. It's messy and I constantly smell.
I await my final test (CT scan) to see if it ok to go ahead with a reversal and feel I have no choice. I'm terrified.