A few cyber fistula friends have asked me how I manage my fistula on a daily basis so here goes ……
Firstly of course there are many types of fistula, my particular beast is called an enterocutaneous fistula. Entero meaning it’s related to the intestine and cutaneous means related to or affecting the skin. So in my case the fistula goes from the small intestine to the skin. There are other types that may form internally from one part of the intestine to another or even from the intestine to the bladder or back passage. In a way they are a safety mechanism as it’s your body’s way of dealing with very toxic waste, which without the fistula, would at worst kill you or at least make you very ill. Most fistulas result from an anal abscess. A small number of fistulas may less frequently be caused by other processes such as Crohn’s disease, surgical catastrophe, tuberculosis, cancer, or diverticulitis. Mine was surgical catastrophe and yes what a catastrophe it was. I think everyone who is unfortunate to have one though, struggles as they are not pleasant. Your head cannot process what is happening and your survival mechanism tells you constantly something bad is happening to you. You can’t get away from it as in my case, it’s just there in front of me every minute of every day. The fistula, of course, is probably saving my life but I can’t always see it like that. I’ve had my ileostomy 32 years and I can honestly say it’s been fine, not something you would chose to have obviously but far better than trying to cope with the very debilitating symptoms I had before the surgery. But the fistula – I hate it. I’ve had it almost 3 years now and it’s taken so much from me. But I have to try and move on and live with it as time is passing me by and my life has been on hold really since that fateful day in January 2015 when everything changed for me and my family.
So my daily routine – on a good day, I change the bags once. I usually shower in the evening about 7 and then spend about 2 hours in the bedroom whilst I remove the bags and let my skin breathe for a while, the bags are then replaced and I then have to leave them to settle for a good while or else I find, leaks are more likely. On a bad day thought it’s a different story. If for whatever reason the exudate from the fistula is more, I am more prone to leakages. The stuff that leaks out is sometimes quite caustic and the same enzymes that will digest a fillet steak do a pretty good job of destroying my skin so I have to be very careful. On days like this I tend to stay at home so I can manage it better. I do worry what would happen if I broke my arm, or get dementia or even when I get old as this is it for life now. I try not to think too much about the future management of things. My husband is good with certain aspects of my illness but I don’t think he could cope with this side of things. Besides which I wouldn’t want him to do it, I wouldn’t want anyone to do it so I just hope I stay well enough to manage things myself.
My Tool Kit
So that’s my tool kit, not too bad compared to some. The ileostomy bag is on the right and the smaller fistula bag is next to it. I have to cut the hole in the fistula bag depending on the size of the fistula as they change. This is one of the most frustrating things as they can heal and I feel great! But it never lasts and usually a good week is followed by a bad one when they open up again. In doing so I become ill, shivery, exhausted and back to square one, I find that hard. I have to pack the sides of the fistula bag with a paste which is very sticky and messy – this helps with leaks and then I put the banana shaped thing over the edges, again to stop leaks. The ileostomy bag is easier to manage as a stoma is proud and sticks out, almost like a little spout. The fistula on the other hand is recessed so it’s harder to manage. I am lucky -I have seen people with fistula far far worse than this and I don’t know how they cope, I’m not sure I could. But then again until you are in this situation, you don’t know how strong you are.
So that’s it basically. I’m not your average fistula patient as mine was caused by surgery with no apparent underlying disease, but the jury is out on that one. If there was no disease, it would heal but it doesn’t so to be honest I don’t think they know why this happened and remember I have tried to have it repaired and I nearly died in the process. Seven months ago today I was in intensive care hours from death, I stayed there for about 9 days during which time my lungs had failed and my bowel perforated again and no one really knows why. That’s hard too.