After my emergency stoma and ileostomy 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, without sticking the bag onto it constantly.
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 happen 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.
Hi, I also have a Mucas Fiscula, however mine is not joined to my Back End. I have a Rectal Stump, and therefore not output is produced except for the occasional amount of Mucas.
My Loop Ileostomy is connected with my Fiscula and I have the remaining Bowel washed out every 3 Months or so, just to keep things moving.
My Ileostomy performs as it should on the Output end.
So many combinations?
Thanks for sharing Chris – it does appear that the way they do it differs for everyone. From what I understand, it can also be impacted by how severe your disease is before surgery, and the placement of the mucus fistula (mines in the crease of my stomach, but some are placed higher up, and effectively seem to ‘seal off’ after a while). It’s definitely interesting and not talked about enough! Appreciate you sharing your experience. All the best, Imali
Hi I have had my mucus fistula with iliostomy for nearly a year now. Had uc for 10 years previously and had to have op a year ago as was very ill with bowel perforation. Thank you so much for your info as have found so little on the MF.
Most of my problems have been with the fistula. In fact it all started when I came out of hospital and had to have district nurses as my fistula was infected always leaked and smelled and they dressed it which lasted 5 min and couldn’t understand why it didn’t heal and close!!! It took my stoma nurse (after 3weeks of me constantly crying, and my husband and I becoming experts in putting bigger and bigger dressings on it) to explain it shouldn’t close and she then gave me a bag for it.
Mine is situated below my stoma just above my public hair line and looks like another belly button.
My problem is leakage I use a Salts neonatal bag which leaks regularly. When the mucus comes out sometimes it doesn’t go into the bag but sits on top of the join and then unsticks and leaks. I understand as there is no Stoma to go into the bag it’s more difficult. I would love to wear a cap (have tried), but my output is too much and it would leak even more than the bag does.
Had a flexible Sigmoidoscopy (have 8 inch rectul stump left) last week and apparently I still have Proctitus and active UC . I am going to try Pentasia suppository’s in the hope they reduce the output. I also regular pass mucus from my rectum.
Sorry this is so long winded but I have cut a lot of my story out.
Any comments or ways to reduce the leaking would be gratefully received.
Thanks you so much for being there.
Lee.
Hi Lee,
Thank you for taking the time to comment – I’m sorry to hear that you’ve had a rough time of it, and hope that other than the issues with the mucus fistula you’re feeling a lot better!
You’re right, there’s so little information out there about it, and none of the ostomy companies really make products designed to help us with them, so we end up ‘making do’.
The care (or lack thereof) that you received after your surgery in regards to not being told why it wasn’t healing sounds terrible and traumatic – it’s dreadful the amount of people in the medical profession who call it a ‘wound’ when it’s not designed to close!
I too have active UC going on in my bowel, and find I loose a fair amount of mucus daily. I tried the stoma caps, but like you found, that they leak within minutes. I have also tried the Salts bags, which I know have rave reviews, however, I haven’t found them to be useful in my case. Sometimes I find that the sticky adhesive either peels quickly or melts into my skin so much I can’t get the bag off. It’s a shame, because I like the design of the Salts bags! Not sure if it’s my skin, or just a quirk!
I have ended up settling on using the Coloplast, Sensura Mio small pouches – these were originally introduced to me to use with my ileostomy, for times where I didn’t want a full size bag, but I quickly found that they work well for the Mucus fistula. Similarly to you, I find that the mucus doesn’t go into the bag, but gathers around the entrance – with the Sensura Mios, the adhesive pad is big enough that it remains well stuck for 24 hours at a time, so I don’t have leaks often anymore.
Having said that, I do change the bag everyday (in the morning) and sometimes I can see there’s been more output than others… Most of the time I find it works out ok! There’s always moments though.
Hope this is helpful – Pentasa suppositories aren’t too bad – just rather large.
If I can answer anything else, please let me know, or if there’s any other posts you’d like to see from me.
Imali 🙂