Seraphina, I’m so glad I was able to cheer you up, even just a little. Don’t ever feel bad about ‘whingeing’!! you are not whingeing, not one bit, what you’re going through is so difficult, and the fact that you can’t just tell people so easily makes it even harder (in my experience). Your abscess sounds like it may have been in a similar position to mine, on the ‘cheek’ but close to the entrance.... my abscess was big, and the wound felt huge, I literally felt like I had a ‘gunshot wound’ (as others described it). I think if its draining that’s great..... mine would drain more as I moved around too, and the sitz baths will help it drain even more. I think you’re doing all the right things. I know how scary it is – when I had my first surgery and then it began to hurt again, I knew something was up, and to hear the news that I would have to have a second surgery, like you did, it was devastating, because during the first surgery I kept telling myself ‘it can only get better from here’.
Fistulas and abscesses are horrible things..... I wouldn’t wish one on my worst enemy! You are doing really well though – how are you going pain-wise? Are you sitting ok?
Exit 4 – hello!! I’m glad I can give someone hope, because I know how hopeless it can feel, it is so frustrating when your body doesn’t want to heal its self as fast as you would like it to. When do you find out about your next treatment option? I know for me the surgery wound started healing freakishly fast after I started remicade, but it did take many infusions before it was no longer raw and started turning into ‘normal’ skin colour again. My wound is not completely closed either, but I am loving the fact that I don’t have to look at it every day (do you get a mirror and flip with your head between your legs? I was always scared someone would catch me doing that!).
I know how horrible it is also to have the fecal matter problem – words can’t describe how yuck it makes you feel. I found that babywipes were fantastic (you can get flushable packs of wet-wipes now, packs of 20 which can fit easily into a trouser pocket, I still use these at work), and a little piece of 2x2 gauze (you can buy these from the chemist for wound dressing) folded and placed carefully helps absorb anything that comes out after a BM– so you don’t have to worry as much because you can just flush the gauze if it gets messy. These are all measures to deal with things in the short term though, I hope your GI gives you some answers regarding your next biologic option. That was the clincher for me. I felt like I was never going to heal and would never again sit flat on my butt but after a long long wait it finally happened.
You’re both being super-brave, and I’m glad I can give you some hope, the experience definitely made me stronger and more understanding.... please please please keep posting and let me know how you are going....