My surgery recovery is going GREAT! No pain, stoma works (erratically, but that’s a young stoma for you), and I feel better than I did before surgery. There are other things that are going not so great. I’m having Prednisone withdrawal problems and I am now the new owner of yet ANOTHER auto-immune problem.
I had been on Prednisone off and on for about 10 moths. Mostly on. I spent four months at relatively high doses. I took it to reduce inflammation in my intestines. It does that very well. However, long term Prednisone usage can cause high BP, high blood sugar, osteoporosis, weight gain, facial swelling, and delicate skin (among a ton of other problems). The sever side effects together can be captured under the umbrella of Cushing’s Syndrome. Unfortunately, taking such high doses can make your body lazy at making it’s own corticosteroids (especially cortisol). You end up in withdrawal. That’s why it is important to not go “cold turkey” when you’ve been on steroids for awhile.
Your body makes the equivalent of 5-8 mg of the Prednisone per day. I started having issues around 10mg – horrible body aches and pains. I was also exhausted. I went through 10 days feeling like I had the flu. Also, every day it felt like I woke up with a different joint injury. One day I couldn’t close my hands all the way without pain. Another day my elbows would hurt. It took concentration to shampoo my hair! My shins always hurt and my feet felt like I was walking on rocks all the time. I called my surgeon’s office and they had me contact my GI (GI’s deal with Prednisone tpaering a bit more often) for a better taper schedule. I was put back up to 12.5 mg. And instead of tapering by 5 mg every 10 days I’m tapering at 2.5 mg every 10 days. That means I will be on that horrible stuff longer, but I am functional again! I just hope I continue to be functional when I taper back down to 10mg in a few days!
In addition to the Prednisone problems, I also had a sore develop below my stoma. It started as a little red bubble looking thing. It then grew into an ulcer. I went to a WOCN (Wound, Ostomy, & Continence Nurse). They specialize in stomas among other things. The ostomy nurses deal with ostomies constantly. They are experts at dealing with stomas. They see all of the unusual stoma problems, stoma shapes, skin irritation, and ulcers. I had the ulcer silver nitrated (aka burned). A week later, the ulcer was bigger. I again went back to another WOCN and they silver nitrated it again. Over the next week, I noticed that it was burning and hurting lots more. In addition, an area away from the ulcer was hurting. About a week after that last appointment, I changing my stoma appliances and noticed that the sore looked a bit..disturbing. Ok, it freaked me out. It had grey and purple edges. It was also oozing quite a bit. I rubbed it the wrong way and it started leaking quite a bit of blood. I took a bunch of pictures. I compared them to pictures I had taken a few days before. I could visually see how it had gotten much bigger. Since I was changing my ostomy appliance at night, I ended up emailing the pictures and an email to the nurse at 1:00 in the morning!
I received a call at 9:00 a.m and they thought I needed to get it looked at that day. So off to Cleveland I went (7 hour round trip). I ended up having two ostomy nurses, the surgeon’s nurse, and a surgical fellow looking at it. I felt like a science display! Actually, the surgical fellow was there to give a second opinion about whether they would need to do any skin cutting.
During the appointment, the first ostomy nurse and the other nurse were looking at my stomach going “does that look like pyoderma to you”… “yeah, look at the yellow along the edges.” Now, I had looked up various peristomal sores before this appointment and pyoderma showed up as one of those things that you do NOT want to deal with. It’s hard to get rid of and painful! It also makes pouching difficult. They asked me “didn’t this hurt quite a bit?” I told them yes, but I had no idea what in the world goes on with an ostomy in general! I thought maybe an ulcer was supposed to hurt that badly? Plus, I thought I had just pinched the skin strangely in the other area.
Well, the two WOCN’s, the surgeon’s nurse and the fellow all agreed that I had Pyoderma Gangrenosum. Pyoderma Gangrenosum occurs when the body attacks the skin. My PD looks very similar to this (Warning, ouchy picture appears. The little red circular thing on the right is the Stoma, the rest of it is the sore.). PD sometimes shows up with IBD’ers, generally on the legs. I was strange in that I developed it while already on steroids. One of the treatments is oral steroids. One source put the incidence rate at 3% of UC’ers. In general, the disease affects 1 out of every 100,000 people (keep in mind that UC affects 1 out of 1,00 people -my mom told me that I need to play the lottery). Fifty percent of the people who get PD already have another auto-immune condition. Another source said that 0.6% of ostomates get it. I just have to say that I was glad I kept going back to the doctor and that they have some highly experienced people in Cleveland. The sore was only about the size of a quarter – it can get soo much bigger.
The treatment is fun! I first got some pain killers injected directly into the wound. Then they injected steroids directly into the wound. Those stung! I also got a much softer ostomy system (along with some powder, some seaweed called Acquacell, and a barrier). I have to say, after the first treatment and the new ostomy system I feel sooo much better. I’ll have to return to Cleveland every two weeks for treatment until the PD is healed.
So, overall right now I feel pretty good. These two small rough patches have been handled (and they are “small” compared to some of the issues I could face). I feel like I’m once again returning to a somewhat normal life.