My name is Leah, I am 34 years old. I was diagnosed with UC when I was 20. In that time, I got married, had two beautiful daughters, got divorced, and have recently started a new job. I am currently in a flare that seems to be getting worse daily.
Leah’s Colitis Symptoms:
Erythma Nodusm….has anyone else dealt with this? i woke up last Sunday and my right ankle was so swollen I couldn’t walk. Since then, it has stopped hurting so bad, but bright red, painful, hot lumps have sprung up on my lower legs. Joint pain….I feel like I’ve been in a car wreck. Running to the bathroom about 10-12 times a day. Sometimes bloody, sometimes not, mostly just mucousy and disgusting.
Leah’s Colitis Story:
I hate UC. I am currently in a flare, which is no surprise, because it seems that my flares usually happen in summer, specifically July. I don’t know why that is. I have been doing the SCD since January and was noticing real improvement, so had begun tapering down on my prednisone. I have been on this ridiculous, horrible drug for a very long time. Every time I try to come down to 10mg and below, I have joint pain that lasts a few days. At the end of June we had a major storm that put our power out for over a week. Stores were closed and it was really hard to get bare necessaties, let alone the fresh stuff I needed for the diet. So, I ate what I had because I had to. I ate a pop tart and almost immediately knew that I had screwed myself up. I’ve tried to go back on the diet, but think I need to start on the intro again, because I’m still having a very hard time. Last week my legs and ankles swelled and were so painful I could ba rely walk. Now I have lumps all over my legs and they hurt and are hideous.
I do not currently have a GI doc. The last one I went to (before I had insurance) did not run tests on me or barely even touch me. He heard that I had no insurance and pretty much told me that he wasn’t going to scope me because of that. Then he re-upped my prescription for prednisone and told me to adjust it to how I was feeling. I have asked my GP for a referral, but they haven’t called back.
It is so disheartening. I feel like no one I talk to understands. They can’t imagine how I can be up and normal one day, and the next day feel like I am on my deathbed. Why can’t I just be normal? It is so hard to live like this and have no one to help me, and to be the mother of two kids who still depend on me for pretty much everything. I worry about what having a mother who is sick is doing to them psychologically. I have such guilt about not being able to do more for them and with them.
I just wanted to rant a little bit. I know it will get better eventually, it always does.
Where I’d like to be in 1 year:
Off prednisone forever.
Colitis Medications I’ve Taken/Taking:
Prednisone 10mg, 5mg on alternate days.
written by Leah
submitted in the colitis venting area