Problem Stomas

Personally, I have had three stomas over the past 30+ years. One was from retraction, and two were because of the reoccurrence of the disease. The first was a revision of a retracted stoma. At the time of my first surgery, I was extremely underweight. I have no idea how much weight I gained within the first year after my surgery. I ate everything in sight and enjoyed every morsel. With every pound I gained, my friends and family rejoiced. I had been so sick that I missed many celebrations and gatherings and felt like I had a new life now. My daughter was two, and I could finally enjoy her in a way I couldn’t before my surgery. I was living it up one slice of pie at a time!

However, by the time my second stomaversary rolled around, I was looking at another extensive surgery. My stoma had retracted, and I had gained a lot of weight, a terrible combination. It was also way past the time that I had the proctectomy done, making my ostomy permanent. The months leading up to this surgery were the worst. I changed my appliance 2-3 times daily; my skin was raw, and my emotional state was rocky. I was a wreck, afraid to leave the house, but I had to work. This was a low time for me. Without an ostomy nurse to consult, my dad helped me navigate my problems with pouching. He would call ostomy supply companies and tell them all our problems, and they would send samples. We would try those and then call them back and tell them what was working and what wasn’t. It was a tedious process that ultimately would end in surgery.

Professionally,  I have learned much about pouching difficult stomas through my education and practice. I work at a large university hospital that cares for some of the most challenging patient complications. To say that I have worked with some difficult-to-pouch stomas does not capture my experience. Some of my patients who have these difficult-to-pouch stomas are also not candidates for stoma revision, which means that a poaching solution has to be found.

Here is one of the most common questions I get from my patients. “How long should you wear an appliance”? The answer is the same and different for everyone. My answer is, when it needs to be changed, change it. The most common indicator is when it becomes itchy. The itching is a sign that the parastomal skin is becoming irritated. Now, if you are a person who changes your appliance every Monday and Thursday and this works for you, then great, continue with that schedule. If you are someone who does not have insurance or is underinsured and is trying to make a pouch last as long as you can and keep it on for eight days without hurting your skin, then do that. Changing your appliance predictably will always yield the best experience. By this, I mean that if you constantly change your appliance on Mondays but feel itching on Sunday, change it on Sunday. I guarantee you will have a blowout, or you will have to treat your skin when you do change it if you wait. If you always leak on the fourth day, change it on the third day. See what I mean?

I often see patients with problematic stomas trying to stretch the pouch time out; this always ends poorly. The best thing to do when you have difficulty keeping a pouch on is to see your ostomy nurse. If you do not have one in your area, you can contact Convatec, Coloplast, and Hollister, who all have professional resources to help you find an appliance that will work for you. You can find links to these sites under the resources tab.

Over the years, I have made several YouTube videos demonstrating pouching techniques for difficult stomas. The link is at the top of the home page.

I hope this helps 🙂

Becky