After my emergency stoma surgery in March 2024, I woke up with not one bag, but two. One is for my ileostomy and the other is for my mucus fistula. I’ve discovered that there is little information out there about mucus fistulas, and while not everyone with who has stoma surgery will need one, severe cases often require it.
What is a mucus fistula?
A mucus fistula is a small opening that connects the remaining part of your colon to the outside world. It allows your body to get rid of any waste and helps to keep the remaining part of your colon comfortable. In my case, I have 9.8 inches of colon from my bottom, connected to the mucus fistula which had to be left during my surgery. This is disconnected from the rest of my GI tract, so nothing processes through it. Between the lack of use and the suitable exit for waste, this keeps it in fairly good condition (although I do still have some low-level diversion colitis symptoms).
Mucus fistulas can be temporary or permanent, depending on the condition being treated. Mine may be closed one day, if I have my second surgery (proctectomy) but it’s not part of the plan for the moment, as I’ve taken well to the current setup.
Placement challenges
If there’s one thing I wish I had known before my surgery, it’s to think about the placement of the two bags on my abdomen. My mucus fistula is placed very low, in the crease of my tummy, relatively near to my ileostomy. Due to the size of the sticky pad on the stoma bags, they overlap, which made healing my midline incision difficult to heal, without sticking the bag onto it.
Another challenge with having the mucus fistula positioned so low came when I was attempting to heal, as the stitches I had felt tight and they were on-top of my bladder. As my bladder would fill, it would stretch the skin and the stitches which was uncomfortable and took a while to settle.
Body hair in this area has also been an ongoing challenge, as the stoma adhesive will not stick to hairy skin, so it’s important to keep it well shaved.
I have subsequently learnt from my stoma nurse that in some cases, it’s been possible to place a mucus fistula next to an ileostomy, allowing for the output of both to fit into one bag – which is genius! If you have the opportunity to speak to your surgeon before your surgery, I’d highly suggest considering where you want your bags to sit on your abdomen and asking if its possible. Be aware, once a mucus fistula is placed, it can’t be moved.
Can it be removed?
A mucus fistula can be removed, but this generally only able to happy as part of a major surgery such as a proctectomy. This is a massive surgery and takes considerable planning to ensure that you’re robust enough to cope with it, but for some people it’s worthwhile.
In my case, I have been offered a proctectomy down the line, but my surgeon and I have agreed it’s not something I want or need to pursue for the time being. My stoma is permanent, as I’m not eligible for a J-pouch, so a proctectomy would be my only option for long-term removal of the mucus fistula.
What I’ve learned
Day-to-day my mucus fistula has minimal output, so it’s relatively easy to care for compared to my ileostomy. At it’s worst, it’s outputted about 2 tablespoons of liquid per day. Most recently that’s reduced to about half a tablespoon per day.
I’m an open book and aware that there’s not many resources out there about mucus fistulas, so if you have any questions I’m happy for you to leave me a comment! Ask away and I’ll do my best to answer.
If you’re wondering what food I eat following my surgery, I’ve written a blog post which you can read here. Looking for more support? The Ileostomy and stoma support group is a friendly space to chat with other ostomates.
