As I am at home recuperating, and because I can’t drive, sit properly or go out, I decided to write a post about my complications of stoma surgery.
( great to get those TED socks off )
JUST A WARNING OF STOMA PICS THAT HAVE ISSUES IN CASE YOU DON’T WANT TO LOOK.
My latest ramblings about surgery started many many months ago with a barbie butt. I had my rectum and anus removed in November 2016 and it went fairly well I thought. The pain wasn’t so bad ( if having your bottom removed had something to compare to) I struggled to find a comfy spot but felt I could cope.
For two years things were not as straight forward. I developed a persistent perineal sinus tract that was a nightmare. A hole had appeared that constantly leaked fluid from my pelvic cavity. It was uncomfortable and mentally challenging. I would go out with friends sometimes, and leak through the dressings. As you can imagine, it wasn’t a barrel of laughs. I had an MRI to check how deep etc, then the waiting for results and hospital appointments and decisions what to do with me took TWO years. Does anyone know the psychological trauma of leaking constantly through your non bottom does to you?
Anyway, it was decided I may need a flap of muscle to transfer into the wound, but my surgeon then decided to open me up to check first and see if he could clean it out. In May this year I had this done.
I woke up to a wound that was big enough to fit a fist in and a sanitary pad stuck to my bottom. I was sent home with absolutely no aftercare at all except to get my GP nurse to change dressing ( i.e sticking another pad to my arse).
My nurse was confused as the wound was a gaping cavity and she felt it should be packed. She rang the hospital ward who didn’t really have a clue but said it didn’t say to pack it. I was in limbo with a wound you could lose your plunger in. My consultants secretary was off so I couldn’t ask him. I didn’t get to see a doctor when I left the hospital. So my nurse just did as she was told and I just continued to leak. I rang my surgeon who booked me to see him and he explained that the cavity was too big to heal without flap surgery and he would book me in asap. I really like my surgeon, but really???
After about two months my sinus decided to stop leaking as much ( bloody typical) and wasn’t as painful, the hole had shrunk.
Two months later I went down to surgery after seeing a plastic surgeon too, and woke up without the flap surgery once more. They had opened me up and noticed that the end of the sinus that led to my pelvic cavity was healing, so they tidied me up and sewed me shut. I was pleased that it was all over now, and that I hadn’t needed the more complex surgery, although I have some reservations about it returning.
For example, the consultant that came to see me the next day said ” I always tell my patients not to worry at all if the hole returns, it might do because there is still a cavity but you can then go to your GP nurse to get it packed so that it can heal from the inside out.”
I feel some concerns here.
Since my original surgery I have also been plagued with a stomal fistula. This is another abnormal tract but from my small bowel through to my skin right next to the base of my stoma, you really couldn’t get any closer. This meant that when my stoma poo’s, the fistula poos too, that’s fun. I managed with it for these last two years fairly well. But it can be painful and awkward. As you can see from the pics, I have a very sore patch where the output touches the skin. As you can see, it has stripped my skin there so when any output gets onto it, which is most days, it is agony with pain and itchiness like nothing I have experienced.
The bag has started to lift when it poos so that my skin is unbearably sore, and I have leaked about 5 times in a few weeks. once at work (you just stand there for a second not knowing what the hell you are going to do ), and another time in my uniform but after I had got in from work. The rest was all in the night, the most recent the night after I got home from hospital. I tried to get out of the bed quickly but remembered that I had had surgery on my bottom so was unable to leap gracefully out, I kind of rolled onto the floor. I stood, wobble a bit and felt it run down my leg. This was not fun at 5am with a bruised stitched arse.
I was cursing and yelping with pain from my middle and bottom but didn’t manage to wake anyone for moral support, I felt putting the “big” light on and stomping around might be a step too far, so I got on with it and sorted myself out.
I have been advised to get the surgery and now feel the time is right. I am so not happy with it at the moment, the thing has got bigger and therefore more output comes out of it, and then more leaks and soreness. This surgery should then be it I hope. Would I go through stoma surgery again under the same circumstances? I have to say yes because these are smaller issues than the bigger picture, and yes it is hard but life with IBD is no walk in the park.