Caregiver Stress
Wed, December 03, 2014 12:30 AM
Help!!! My husband has been sick for six years. He was finally diagnosed with Crohn's disease last year. He felt better for a few months on Humira, but then it stopped working. He tried Cimzia and Methotrexate, which have not helped. Next week, he will try a new medicine, Entyvio. Last week, his face was a pale gray/yellowish color, and he was absolutely miserable. I am very scared of losing him. I know that my worrying will not help him, but I don't know how to stop. Suggestions welcomed.
Joined Dec 2, 2014
Tue, December 16, 2014 11:01 PM
Reply posted for sickspouse.
Thanks you so much for responding. What are the treatment options for people who don't respond to the medications? I don't know what would happen to my husband if he didn't take anything to combat the inflammation. If he is this sick on medicine I don't want to know what would happen to him without it.
Joined Dec 2, 2014
Tue, December 16, 2014 10:57 PM
Thanks for responding. My husband was diagnosed with ulcerative colitis when he was 19 or 20 years old. He had his entire colon removed in his early 40's because he had precancerous cells in multiple places. He did very well for about 5 years after the surgery then started having trouble. At first, he was told he had "pouchitis" (he has a J-pouch), and surgery was mentioned as an option (to have a permanent bag). We went to the Mayo Clinic in Jacksonville, Florida for a second opinion, and that's when he was diagnosed with Crohn's (that place is amazing, and I highly recommend it). After a couple of months of steroids, he took Humira and did well for a few months, but then it stopped working. He took Cymzia and Methotrexate for awhile, and that didn't work. He had his first dose of Entyvio eight days ago and will have another dose next week. We are hoping for the best but this sure is scary. His facial color is better now (pale pinkish instead of pale yellowish/grayish). I wish y'all the best and hope y'all find something that helps.
Joined Dec 2, 2014
Sun, December 14, 2014 3:37 AM
Reply posted for wife.
Don't lose hope and try to worry about what's in front of yall right now, not what may happen in the future. My wife is not able to take any of the regular meds and hasn't for years. Last year she had %90 of her colon removed and has an illeostomy and has been in the hospital as much as not this year. Seems that way and it's not far off. She's been sick since '94, and with all that she's not terminal I guess is the term. It can be fatal but really drs can do a lot for folks that don't respond to treatment and fatalities are rare and follow many years of living with Chrohn's. Many. Sure we all worry about losing our loved one that's dealing with chrohns but really a whole lot would happen before that point. Rest easy in that regard. God knows you both have enough trying to cope as it is.
sickspouseJoined Dec 14, 2014
Fri, December 12, 2014 7:38 AM
Reply posted for wife.
I'm so sorry all of those medications aren't working for your husband. Has he been in the hospital or had any surgeries?
My husband has also tried most of the medications and just recently had surgery. The recovery hasn't gone well and I'm wondering if they'll try another medication as well. It feels like We're running out of options.
Joined Dec 12, 2014
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