This is a discussion on Please Help Me Cope With A Disease. within the Member Meeting Place forums, part of the The Back Porch category; I was recently diagnosed as having Ulcerative Colitis. My Doctor is treating the disease with a combination of Asacol, Ameprazole, and Prednesone (a steroid.) I'm ...
I was recently diagnosed as having Ulcerative Colitis. My Doctor is treating the disease with a combination of Asacol, Ameprazole, and Prednesone (a steroid.)
I'm interested in hearing from any member with this disease who would like to share their experience. How are you coping with it, especially any side effects of any medication, and how are you and your Doctor managing the disease? Are you following a particular diet? My Doctor says I can't have any dairy products (milk, cheese, ice cream, etc.) and alcohol in any form (no more pizza and beer,) but otherwise, I should just follow a "normal" diet.
Thanks in advance for any responses.
When you’re wounded and left on Afghanistan’s plains,
And the women come out to cut up what remains,
Just roll to your rifle and blow out your brains,
And go to your God like a soldier.
:( Sorry to hear that, Captain. I don't have a lot of experience, but I was on pred once -- didn't like it at all. I gained weight like a sonofagun, about 10 lbs in 5 days, and it gave me really REALLY weird dreams. Though as soon as I went off it, things were back to normal in just a few days. They say everyone tolerates meds differently though.
Sucks about no pizza-and-beer. Okay, yes, it sounds GROSS, but have you tried soy cheese? It's not...that...horrible.
Hope the meds work and you feel better ASAP! :)
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My dad was recently diagnosed with that as well. I could ask him your questions if you want.
Don't know what I'd do without my pizza. But no Guinness, not sure how to respond.
Here's to hoping your meds work right.
"Without fear there can be no Courage!"
I was watching one of the Discovery channels the other night, and a guy was diagnosed with Colitis, and given steroids to suppress his immune system response (the inflamation, etc...) and it turned out he had a type of worm in his intestines that had been in his body ever since he was a child. (The guy was in his 60s, and from Bangladesh I believe, and the worm comes up through your feet).
Short of it, the guy died, because the steroids weakened his immune response to the point that the worms invaded everywhere, and killed him. This guy's daughter was a critical care nurse too.
Doubtful you got worms from Bangladesh, but, if you take a turn for the worse, go see doctor # 2.
His doc is doing good.
Uh, he could have gotten worms if he was in Bangladesh and I would think it important to mention that possibility to the doc if not already done. Many here never see parasitic diseases these days.
But, until we have reason to know better, he is getting the correct treatment for ulcerative colitis.
I'm not much help here, but my FIL just endured quite a few tests for colon problems, dairy was affecting him extra bad during all of this. Ultimately nothing really showed up conclusively as a result of all his tests. The only med he's taking right now for his symptoms is Wellchol (sp?) and he just started those. Actually the doc thinks it is all due to chronic stress, which he has had PLENTY of.
I wish you good luck with your treatment. I'm only familiar with Prednisone, though I 've never had to take any myself.
BTW, regarding the beer, my FIL has been advised not to drink any alcohol, so he drinks a non-alcoholic beer ever so often, and said they weren't too bad at all. Regarding the pizza, tell 'em to make you one w/o cheese, just pizza dough, red sauce, vegetables/meat, etc wouldn't be too bad?
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Do you know what it is about dairy that you have to avoid - the protein or the lactose? I'll go look it up. May be able to give you some tips and recipes.
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So sorry to hear that sir.
It takes a college degree to break'em;
and a high school education to fix'em!
Sorry about this diagnosis. I believe that God is good and even when things are hard for us, He has a good reason for allowing or causing it to be. Somehow, someway, God is using this for his good purposes.
My wife had/has Chrohns disease. I think it and UC are related, here's my story.
She was being manly and not going to the doctor but finally succumbed. Long story short... she was diagnosed in late September and followed a no fiber, no residue diet. This meant no corn, nuts, seeds, brocolli, basically things that don't digest down to mush. She followed this until Christmas time when she started having some real bad stomach area pain. She drove herself 150 miles to the specialist (did I mention that she's stubborn) and drank some barium and they did a scan (I don't remember what it was called) and doctor admitted her to hospital for surgery to remove infected portion of small intestine and a large absess. She has a 9 inch vertical scar on her abdomen and that kind of surgery is tough to recover from. A few weeks later she had some pain again, went to ER, drank more barium, scan, ambulance ride to Wichita, but luckily small enough post surgery infection to treat with antibiotics. She's been doing great, they felt like they got all of the diseased portion of the intestine removed and there were no signs of any other problems. The disease is an autoimmune disease, basically your immune system thinks there's a problem and tries to fight it. With my wife the small intestine would get inflamed which would cause a restriction/blockage and after a while a tear, then infection. The disease can come back anywhere from the entrance to the exit, but we're keeping our fingers crossed. That was a very scary time in my life, my wife going into a major surgery like that, wouldn't wish it on anyone.
Captain Crunch, I wish you success in dealing with this damn disease. I hope you are seeing a gastrointestinal specialist and taking advice that they give you. Be strong, eat better, exercise (this helps the meds work better I hear). I'm praying for you and your family.
For other reasons, I ate a very restrictive gluten and wheat free diet for about a year. It was awful for about the first two months, but I actually ended up with a lot more energy and I lost a lot of weight. Good luck!
Prednesone is a scary thing. My wife has been on it sence she was 12. she is 44 now. the standard dose for her is 10mG a day. up near the 80-100 she grows a big chip on her sholder and anything can set her off. Luckly that has only been once that the doc has set it that high and only for 2 days.
watch the high doses, they can change your personality.
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