Prednisone, oh Prednisone how do I love/hate thee? Let me count the ways… Of all the freaking side effects that I tolerate on this fucking stupid drug, this newest one is not going over well with me at all.
I went to the doctor the other day and it turns out I have a parastomal hernia. (Don’t google that, you’ll lose your lunch fair warning!) This isn’t serious or anything, but it does explain my complete misery and discomfort lately. I guess hernias as fairly common with a loop ileostomy, and that mine is also likely due in part to my soft EDS tissues (great) and my Prednisone. Prednisone makes your tissues softer and makes healing more difficult. Thank you, Prednisone.
Trouble is, the only way to fix the hernia is with surgery. Surgery is complicated right now though because I can’t have it until we get whatever autoimmune disorder I have under control. The doctor I saw yesterday said she also would ideally like me to be completely off of the Prednisone before we went ahead with surgery or at a very low maintenance dose, because I’m still on a very high dose in her opinion. Having surgery while on high dose steroids is riskier and even though hernia repair surgery is not a particularly serious OMGWTFBBQ surgery or anything, you don’t want to add more complications than needed to it. (Of course.)
So I’ll continue my “no pressure” taper, wait until I can get in to see the Rheumatologist in December, and on Monday I’m going to an appointment to get fitted for a special belt that will let me wear my ostomy bags still while supporting the hernia. Ugh. The doctor said that the hernia can cause blockages and that if the blockage became complete they would have to operate regardless of the Prednisone, so if I start vomiting to let her know. Hopefully it doesn’t come to any kind of emergency surgery though, and hopefully the belt helps a lot.
I’m not usually one who has trouble with pain, but this is so bad that by the end of the day I am unable to stand up straight, I can’t walk to the bathroom easily, and even talking or clearing my throat is a challenge. This.. Is not fun at all. Do not want.
My fear is that I’ll be stuck like this for quite a while. I see the Rheumatologist next month but I do not know how long it will take to get my blood work under control or what will happen at all.
So meanwhile I’m pretty bummed about this whole thing. It’s not serious surgery, but it’s still surgery that I will definitely need to get at some point in the future and that is kind of a bummer. I don’t really like the idea of more surgeries but a hernia will not fix itself and over time it will only get worse. I am already having difficulty in my day to day and this is making things a lot harder. I think it would be day surgery, but then it’s about six weeks recovery at home, but since I have Ehlers-Danlos it’s twelve weeks recovery at home because you have to double the healing times and being laid up for that long depresses me to think about. Not that I could live this way forever either, but.. Ugh! Even minor surgery sucks hairy donkey balls.
I can’t wait to get the belt though. I really hope it helps. I’m not even sleeping well.