I’m Leah and I’m a 34 year old single mother of 2. I was diagnosed with UC when I was 20. I have been on the SCD for about 7 months, and have seen great improvement. Because of uncontrollable circumstances, I am currently off the diet and in a mild flare. The main symptom this time is the painful cankles I have developed.
Current symptoms: REALLY swollen and painful right ankle, going to the bathroom about 6 times a day, fatigue, anxiety.
I have been battling UC for at least 15 years, although I think my problems began much, much earlier than that. I have had my ups and downs. My worst flare up happened about 4 weeks after I had my first daughter 8 years ago. At the time, I had a massive headache that nothing would touch, my face actually swelled up to the point that my eyes were closing. I had a fever and all the symptoms of the UC as well-bloody, mucousy, frequent diarrhea. When my fever got to 102, my husband took me to the ER. Even though I told the hospital several times that I have Ulcerative Colitis, they insisted on putting me in a room and run scans on my face and head, call in an infectious disease doctor, do two spinal taps to check for encephalitis, etc. I had to call my gastro from my hospital room, because none of the docs at the hospital would believe that these symptoms might have anything to do with the UC.
When my gastro got to the hospital, he looked me over, ordered a steroid drip, and voila! All better within 6 hours. All the swelling and pain went away, and I got to go home to my baby. The doc said the strain of the delivery had been too much for my body and threw me into a flare. Thus began my long term relationship with prednisone.
I have been on some dosage of
prednisone for the last 8 years.
This year I began the SCD and have been able to decrease my dosage significantly. My main goals in starting this diet was to feel better and to get off the prednisone. I was down to 5mg every other day. Then disaster struck, literally. I live in West Virginia, specifically, Fayette County, West Virginia. We were hit with a derecho (crazy winds, crazy thunderstorms) on June 29. My power was out for 7 days, there were no stores open, there was no way to cook (other than a charcoal grill) or keep food, there was no ice to be found. So, my kids and I had to eat what we could get, which unfortunately means mostly non-perishables. I tried to stick to my diet the best I could, but was limited to mostly canned foods and dry goods. As a result, I find myself in a mild flare.
At the moment I am having some bathroom issues, 6-7 times a day in there, not really diarrhea, but def not normal either, not a whole lot of blood, but i see it occasionally. My biggest problem is my joints! My right ankle has swollen to twice it’s size. It is very painful to the touch. My left wrist is also swollen and painful. My back between my shoulder blades began hurting today.
I currently do not have a GI. I got a divorce a year and a half ago and lost my insurance. My GI would not give me the tests and such that I need without insurance. He also gave me a prescription of prednisone and told me to adjust the dose to how I was feeling. So, that’s what I’ve been doing, but I won’t be going back to that guy. He sucks. Luckily, I now have a job with insurance, but am waiting for a referral from my GP for a new GI.
My questions are:
Does anyone else experience swelling and pain to this degree?
How do you deal with it when you do have pain and swelling?
Does anyone else get red, sore lumps on their legs? I’ve got some of that going on too.
Is the joint pain a sign of the UC or is it from being on such a low dose of pred? Should I power through it or increase the pred? Will it go away by itself if I wait it out?
Where I’d Like to be in 1 year:
Off the Prednisone. Forever.
Prednisone works great for stopping flares, but it sucks when you can’t get off it.
written by Leah
submitted in the colitis venting area