Introduction to Mrs. Huds:
I’m Mrs. Huds and my husband of 8 years has been diagnosed with UC for at least the last 4. Our 5 year old only knows a sick daddy.
What Led Me to Believe Something Was Wrong?
His tummy was ALWAYS hard. For most people, that’s a good thing. It was weird because he looked about six or seven months pregnant, but his tummy was hard as a rock. Well one day we were in the bathroom talking while he was “handling his business”. You have to understand, I grew up in a house with treetop boys (if you’re wondering about “treetop brothers” you must read her comment below!) and one real bathroom, so this is not unusual for me. Ok, so I happened to look (I don’t know why) and the bowl was full of bright red. I freaked. I told him that wasn’t normal. He said it was normal for him. I told him that in no alternate version of ANY reality was that normal.
He went to the doctor and they scoped him for the first time. I don’t really know why nothing happened with that. We moved away and he never said anything until we were in the bathroom again, this time I was showering and happened to look. He got scoped again and was diagnosed in 2008 with UC. They put him on Llialda and a ton of omega 3 and prednisone and to make matters worse, while he was in the hospital, he contacted C-diff. It wouldn’t go away no matter what the docs threw at it. This was all in 2008.
We, then spent the next year in and out of the hospital. He goes into the hospital at least twice a year. He has been on remicade. Has low bone density. Now he’s getting IvIg, which I don’t think is working. He has been referred to the doctors at Vanderbilt and there are so many different doctors, who I am not too sure are all talking to each other. He’s going to get scoped Friday to see if the IvIg is working. If it’s not, they are talking about removing his large intestine, but keep telling him he’s too young.
As a result of his sickness, he has lost his job. He has lost himself. He has lost his patience. He is losing hope, and now I feel helpless. I’m the only one working and taking care of him and a small child. So I’m kind of getting tired. The last time he was in the hospital, he passed out in an elevator 2 hours from home. All because he keeps saying:
“I’m fine. I’m ok. I’m doing the best I can.”
I’ve encouraged him to talk to a professional because I know he’s having a hard time coping with his life right now. He is surviving right now on watered down Powerade and yogurt. For almost two or three years, if it’s not one thing, it’s another. The last blow was his being diagnosed with some sort of Pemphigus in his mouth. This is causing his tissues to separate leaving him unable to eat. This has been going on for so long that I’m sure I’ve left something out. During the work week, the only thing that gives me hope is that he wakes up everyday to turn off his alarm. He has gotten so weak that I’m really afraid. Sorry it’s so long. I’m using Swype on my tablet, so sorry for the “Swypos”.
written by Mrs. Huds
submitted in the “Somebody I Know Has UC Venting Area”