I'm actually posting on behalf of my husband. And this is my first post, so if I'm doing it wrong, please forgive me, not sure how to list his meds correctly. He's probably had ulcerative colitis for years, but it was finally diagnosed 3 years ago with a colonoscopy. He has been on Endocort since then, 3 daily, then 2.
He tried Lialda but it caused severe arthralgia pain and he had to discontinue that.
He has been in a major flare since the beginning of November. It was brought on by Vimovo which his family MD said was safe for his U.C., unfortunately, she was wrong.
To date, he has lost 34+ pounds, down from 200 to 164.
Back in Sept. of 2011 he weighed 309, started Weight Watchers and did quite well, (his goal was 199 which he reached) but when he got this flare, really had no fat stores to fall back on.
Because so much seemed to trigger the gas and cramping, he pretty much stopped eating and drinking. His most recent albumin was 1.5, drawn this past Thursday. Hemoglobin was 9.4, but is probably much lower as he was dehydrated. Has not been hospitalized only because he is stubborn.
Bleeding has stopped over the past 3 days (finally). Cramping and gas is better over past 2 days, so I think he is finally healing.
It has been a long road for him. He has been working until the past 3 weeks, although has taken time off a few days here and there, then a week over the Thanksgiving, then 2 weeks over the Christmas holiday, then he went in last week and the GI MD told him no more work until he gained some weight and strength as his reserves were nil.
Back to my question, anything better than Ensure?
Right now he is on a low fiber diet. I'm watching his fat intake (keeping it as low as possible as that seems to trigger the cramping), no carbonated drinks, no caffeine. While doing WW he drank no milk, but started craving it when he started losing so much weight. I think because his protein and calcium levels were down so low.
His meds currently are: Prednisone 10 mg. 2 q a.m., 1 q p.m. (weekly taper); Librax TID; Levbid BID; Krill Fish Oil 1 daily; D-3 1 daily; B Complex 1 daily; Lactaid 1 daily; Digestive Advantage Gas Defense Formula (probiotics) 1 daily; Tramadol q 4 hrs. prn; multivitamin with iron bid; gax-x prn. Anucort suppositories, he has difficulty retaining them so stopped using them. No enemas were suggested.
The Ensure I'm using are the High Protein, the Clear Ensure and another Ensure, but that one is higher in fat and does seem to trigger the cramping.
I'm so happy to have found this forum. I've read so many of the posts and appreciate what you all have shared.
I haven't gotten him to read the posts, but as I'm his caretaker...also, his mom had ulcerative colitis and she had an ostomy bag back in the 1970's. He has a cousin with it also, so strong family history.
He's had 2 CT's scans, last one this past week, all showing the extensive ulcerative colitis. I haven't seen the reports, but when we go in for his appt. this week to his GI in Louisville, I'm going to request copies of his scans and his labs.
Also, his GI has told me that there is no need for him to see his family MD and I disagree with that. I'll like some input from anyone on that subject too if you don't mind?
I've had to add the vitamins and supplements on my own, including the probiotics and the Lactaid, suggest having the chemistry panels checked, and had to beg the GI to send him to the ER for the initial CT scan. And he is a good GI specialist, but the lab numbers don't lie.
My husband is severely malnourished despite my best efforts and I do not know what else to do. He has no fat stores left, and his CPK's are also very elevated from his muscle wasting. Thanks for your time.
Post Edited (BobbyzGirl) : 1/21/2013 11:48:51 AM (GMT-7)