I’m going to try to start this all over again. I haven’t been very good at keeping up with this blog and I haven’t even tried to keep up with it at all. But I’ve had quite a lot going on personally. So this blog post is to reintroduce myself to blogging and to tell you what’s been going on. This is by no means a short explanation and I think I am posting this more for me than anyone else’s use. If it somehow helps someone or lets someone know that there’s someone else out there with these problems then that’s just an added bonus.
When I was 15 I was diagnosed with chronic ulcerative colitis. Basically, if you don’t know about it, during a flare I have ulcers all over my large intestine and almost all foods are off limits. And the majority of my life is spent in the bathroom. It sucks majorly.
I had my initial flare when I was diagnosed at 15 and that was somewhat easily and quickly controlled. I stayed in remission for a good long time. It was almost like I never had a problem. My second flare was a couple months after I had my daughter. That was also quickly controlled. Not as quickly but knowing what I could have gone through, it was swift. But that flare was a lot more severe and wreaked havoc on my body. It was to the point that they were thinking of throwing me in the hospital. But having a four month old baby dependant on me made them hesitate. There was also talk of surgery but they put it off with a lot of medications, some that didn’t agree with me. But it somehow all worked out.
Then came this last flare. Last summer I was having a lot of swelling and pain in my feet. At first there was swelling in my arches. So, doctors thought that I was suffering from fallen arches so they told me to stay off my feet for a couple days. Kinda hard when you work on your feet for a living! But I did it and that swelling went down but the swelling migrated to the rest of my feet. It was excruciating to be on my feet at this point and ended up having to take more time off of work and seeing more doctors. I went through a bazillion tests and x-rays. I was put on steroids to get the swelling down but it took a couple rounds of that to finally get it under control and for somebody to realize that I have arthritis brought on by my colitis.
This whole time my colitis wasn’t cooperating. It wasn’t a problem at first but one of the first meds they gave me was Ibuprofen even though I made it clear that I had colitis and Ibuprofen is a big no-no. I don’t know if I was going to get sick anyways or if the Ibuprofen set it off but I was definitely getting sick again.
Fast forward to the start of this spring. I started getting these red bumps on my left leg that, at first, looked like they were pimples or ingrown hairs. Gross, I know, but that’s what it looked like. They got bigger and more popped up. It once again began to be very painful to walk. It hurt to even get out of bed. It hurt to walk up and down stairs. It hurt to just stand. My doctor gave me yet another round of steroids to calm the inflammation down. They almost went away then popped up worse than ever after I was done with that round of steroids. I returned to the doctor and he put me on antibiotics not sure of what the problem was and when that didn’t do anything he sent me to a dermatologist that knew exactly what it was the second she looked at my legs: erythema nodosum. Another condition due to my colitis.
I seem to have it under control right now but only cause I am now on my seventh round of steroids in less than a year. Long term use of steroids does not agree with the body and apparently my colitis has gotten too out of control for the meds that I’ve been on. My doctor now has me starting Remicade soon. I haven’t taken it lightly since Remicade is really expensive and one of those medications that you hear has side effects that include cancer and death. I’m hoping that this works because this is really my last option.
Assuming that the Remicade will work and make me all better I am going to take this summer and work on some things that I’ve been meaning to experiment with or perfect or just play with. And if I’m a good little girl I will post my results, good or bad, here.