I was diagnosed with MCTD 7/2024. I have known for about 20 years that I have an autoimmune disease but my CBC was only slightly elevated, every time. My primary would order the cascade and ANA, THS, and all was normal. I always have rashes, digestive issues, dry eye, and I get horrible laryngitis every winter. I have been on steroids once or twice a year most my adult life to control inflammation.
May 22, 2024 was a normal day. After I ate dinner, I became super gassy and had explosive diarrhea. Nothing slowed it down. After two weeks taking Imodium by the handful chased by bottles of pepto, I went to my primary. My blood work was off the charts.
By July, I had 22 vials of blood taken, 6 x-rays, 2 CTs, and four stool samples. All the tests were negative, no parasites, no infections, no bowel blockages.
By end of July, my blood tests from the rheumatologist showed MCTD & my atypical p-ANCA was 1:40, I was advised I most likely have IBD. I already had a GI appointment.
At my GI I had my esophagus expansion done, I swallow so much better now. I was positive for H. Pylori, no current inflammation but he could see I had past inflammation. I finished my H. Pylori treatment, then had a round of treatment for SIBO.
I still have major gastrointestinal issues. My fatigue got better after clearing my infections. My peeling skin on my hand also improved.
February 2025, at my 6 mo f/u I’m expecting to see improvement with blood work. Nope, now my atypical p-anca is 1:80. My rheumatologist isn’t worried, just looking for something new that I may be positive for.
I hate prednisone and refuse to take it anymore. Since July, I’m only on meloxicam for MCTD, but we discussed switching to an immunosuppressant.
Today, my entire body hurts, every muscle, every joint. I took a two hour nap and feel worse. I’m hot but have no fever, my fingers feel puffy and tight. It’s like 7 degrees out and I want to stick my hands in the snow to help the swelling.
I just want to feel normal. I’m so tired of pooping countless times a day. I quit my job a few months ago and I don’t even want to look for work until I can have a somewhat normal bathroom routine. Most importantly, I want to workout without triggering pooping.
Oh, the best part, since last May, I have gained over 20 pounds. It’s so mind boggling, I’m literally not digesting my food and I’m gaining weight. I’m not eating much because everything upsets my stomach.
Thanks for listening and sharing your experiences. Any advice navigating is appreciated!