Help with Fistulas and Healing, Please

Hello there

I have been coming to this site for several months and found you all very helpful, although I have only posted replies a couple of times. I have some questions about fistulas and how they heal and how people cope with them. I apologize in advance for the long post, but any help would be appreciated.

I had an emergency ileostomy in March due to an abdominal lymphoma causing a blocked bowel. I had several post-op complications, including having to have the bottom 8 of 58 staples of my wound removed early due to supposed infection. What actually happened was that the wound burst open on removal of the 3rd one, and loads of stuff just like the stoma output poured out. I had not been warned that this was a possibility and freaked out. After some investigation, it seems there is a leak somewhere under the stoma, and it has tracked along to the wound. It has also been referred to as a fistula, but I don't think it is one in the true sense of the word. I have had pediatric stoma bags on it to collect output.

Between chemo sessions, I repeatedly developed cellulitis around my stoma and on one occasion, the above-mentioned wound hole, which had just recently closed, burst open again with lots of yuckiness coming out - despite an ultrasound 6 hours earlier saying there was no fluid collection.

During a further bout of cellulitis, a hole on my abdomen about 1 cm wide burst open about a centimeter to the right of my stoma, again with stoma output coming out. This has also been referred to as a fistula, coming again from the supposed small leak under my stoma. To manage this, the hole cut out of my bags was cut with a bit sticking out of the side (the hole in the bag looks a bit like it has a beak-like shape sticking out of the side). This seems to work, but of course, the skin between the stoma and hole that is always exposed to output is sore, especially when the output is watery.

The output from both extra holes has much reduced, especially since my chemo finished, and both holes have reduced in size and appear to be healing, although the wound one is at the bottom of a dent in my stomach like another tummy button.

I am now usually able to cope with a Mepilex plaster and Aquacel on the wound hole as long as I change it daily. Mostly, the output from both looks more like pus. My stoma nurse saw it several weeks ago and said that is what comes out when it is healing. Still, some watery output clearly from near the stoma sometimes as I see things like strawberry seeds on occasion. I had a scan with radioactive fluid that said there was no connection between the bowel and the wound hole, and I used the presence of strawberry seeds to dispute the test results!

The hole by the stoma was getting much smaller but has now turned into what looks like a red sore bubble of raised flesh about 5mm wide. A little fluid still comes out of it regularly and sometimes gas/foam, which feels very odd but not as painful as it used to be. When the hole first burst open, all the edges were really painful to touch.

What I would like to know is if this sounds normal or like other people's experiences of fistulas and their healing, how people cope with the output and sore skin.

I am also worried about blocking the fistulas because although I chew everything for ages, if a fistula is healing, can't even a tiny bit block it? How would I know? My abdomen is generally sore, swollen, and hard under and around my stoma due to inflammation and scar tissue caused by the lymphoma.

Any help, tips, advice, or just experiences would be most welcome.

Thanks in advance

Sam

Hi Tigerlily, I too have several fistulas that haven't healed. The holes close up and reopen elsewhere. The pus-colored stuff for me is the enzyme that the bowel uses to break down food and is alkaline, hence the burning to the skin. I don't know what to tell you except it's going to take time to either dry out or you will need further surgery. By the sounds of things, it looks like yours is healing. I was told that what generally happens is the scar tissue tightens to a point it seals the fistula. I hope this is the case for you. For me, it's been a long line of frustration and I am seeing the surgeon again this month to make a decision to try and fix it surgically or persevere. For me, the difficulty is the management of the wounds. I hope you continue to heal and you're in my thoughts.
Trish

Yes, I had a fistula after the first surgery (colostomy), but I was not allowed to eat or drink any fluids - they had me on TPN and only ice chips for 5 1/2 months. My fistula was only corrected when they did the second surgery (changed colostomy to ileo and a bunch of other things). Don't know if this helps you out or not - let us know how you make out.

What has your surgeon had to say about the fistulas? Can they be drained? I have an area under my stoma from where they took granulomatous tissue and it has not healed after a year and a half. I now use a material called silver, use a q-tip to push it into the wound in place; if the skin is broken out use an antibiotic powder, not a cream, put on stoma powder then spray, doing this x2 before placing a softened ring around my pouch opening. I push this ring down around the opening, using more of the ring where the soreness is the worst. I had several fistulae when they did my surgery. So far, knock on wood, I have not had a recurrence. So in that respect, I cannot help you but I would think your surgeon would be interested to see you. Good luck.