Colitis - just diagnosed after colonoscopy & biopsy - starting new med - anyone else with colitis?
#4658 - 03/31/03 03:41 PM
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KaybeeC
Reged: 03/14/03
Posts: 241
Loc: Ohio
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Just got the results of colon biopsy and I have "mild acute colitis." GI doc will start me on Acasol (sp?)tomorrow. I'm a little depressed about this because it sounds as though there's no "cure" - just pray for remission. Please pray I can tolerate the new med and can go to work! Desperate for paycheck! Also, does anyone else on the board have colitis? Can you give me any encouragement? Thanks and God bless!
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KBC - I thought colitis is the old name for IBS? Didn't the doc tell you anything else? What did he take a biopsy of? Were there polyps, etc.? You gotta grill the docs or you won't get any info from them!! They're not God, just doctors and you have a right to know what he foun--in laymans terms.
Let us know.
Sharon
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Sharon
"Anything Chocolate"...that is all!
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Yes - I remember being diagnosed with "colitis" years ago - they also called it "irritable bowel". But it's the same symtoms I now know as IBS. There is such a thing as "ulcerative colitis" which I think is a bleeding colon. Not sure. But obviously much more serious.
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Hi
My husband was diagnosed in 1998. He has severe colitis. Fortunately, he hasn't had a flareup since October.
Here's his recommendations:
1. reduce your stress - don't worry about things you can control!
2. get lots of rest - don't stay up late! Even if you sleep in to make up for it, it still puts unneeded stress on your body!
3. make sure you take your medication. Salofak is much better than Asacol. With Asacol, Lucas developed a buildup in his kidneys and when he thought he was peeing blood was actually the medication. As soon as he went on Salofak he side effects were nearly eliminated. Ask your doctor if you can do that. Are they putting you on steroids? Which ones? He can offer suggestions there as well.
4. your diet is really important. Stay away from the biggies - alcohol, spicy foods, dairy and really oily food
5. yes, there's no cure. But its something that you can control! Eventually you can get off of medication! Lucas has nearly reduced to nothing. We think that by the summer he will be off Salofak. That doesn't mean anything changes - just he doesn't take the pills. His diet stays the same.
I think his biggest challenge was reducing his stress level. It took a lot of time for him to figure out his stress triggers and how to avoid them. He is the biggest worry wart I've ever met and it doesn't help his condition. He now just takes it day by day and focuses on the things he can change and ignores the things he can't.
I would have to say that family can really help you with this condition. I keep his diet in the 'safety zone' and I try to help with the stress. (He helps me with my IBS too!) It's teamwork!!
I hope this information helps. If you ever need to talk or want to talk to my husband we have MSN Instant Messenging. Our email is kimandlucas@hotmail.com . He's been on lots of different medications and has lots of experience in this field because he's a scientist. So he'd be the one to ask. And if he didn't know the answer - he would find a way to get it for you!!
Take care of yourself and don't feel down about your diagnosis. It's a new challenge, a new fork in your life road. You can do this!!!!
Kim
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Welcome to the board! It sounds like you've gotten a diagnosis for ulcerative colitis, which is an inflammatory bowel disease. This is not to be confused with "colitis" or "spastic colitis" which are old-fashioned terms for IBS.
But, the diet guidelines for IBD and IBS are the same, so we can help you there. I'm going to send you to some links for diet info - it's really important for you to pay attention to insoluble fiber, as too much of it could cause a bowel obstruction if you have intestinal scarring from past episodes of inflammation. Also, it's crucial that you avoid red meat as you're already at an increased risk of colon cancer as a result of the IBD. Check this link web page for more info.
I'd add in something like flax oil or fish oil supplements as well. They have omega 3 fatty acids which are anti-inflammatory and can be helpful. Soothing herbal teas like peppermint or fennel will also make you feel better.
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Well that was silly - I didn't mean to say irritable bowel - they use to say "nervous stomach".
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Thanks, Heather and everyone else! And, Kimbo, thanks for sharing your email address. Here's what my doctor found:
During the colonoscopy, she took a tissue sample and had it biopsied and it showed "mild acute colitis" - she didn't use the term "ulcerative" but from what I've read, there's really only that kind. The colon is "healthy" - no stiffening, no polyps, no cancer.
She put me on Asacol and wants to see me in 10 weeks from the date of the colonoscopy. That will be my first meeting with her to discuss the diagnosis / treatment / prognosis. I'll ask her about the other med, Kimbo.
Actually, I'm a little scared now, especially after reading Heather's information. I don't know how to reduce my stress level - I just got a job (temp to perm, the call center position I mentioned earlier) and will start Monday, April 7th. I must work to support myself - and I don't have a lot of skills. Also, I have been having a few panicky episodes lately - was agoraphobic in the 90s, but, praise God, the panic is virtually gone. I'd really just like to ask my grandmother to "support" me for a while so I can go back to school and learn a skill that will let me get a job with great benefits, including disability. And, get the rest of my physical health in a little bit better shape! I've actually lost about 12 pounds in the past month since I started following Heather's guidelines - but I've been so tired, I just eat the same thing: Rice cereal with rice milk, baked potato w/soy butter, baby food fruits, Progresso chicken and rice soup, baked chicken breasts, applesauce, cornmeal mush slices with pure maple syrup, and, of course, bakery French bread. I actually look forward to my Citrucel drinks, but now, after what Heather said, maybe I shouldn't be taking that???? I would like to add some other foods to my diet but I'm afraid to - I can't miss any days of training (four weeks) so I don't want to cause a flare! I love baked / broiled fish and was thinking about adding that.
Having said all that, I want to "Trust in the LORD and lean not on my own understanding." I want to "acknowledge Him in all my ways, and He will direct my paths." (paraphrase from Proverbs 3:5-6). I will also have my friends pray for me and will be asking for a group of people to lay hands on me and pray for healing (which can come Divinely and instantly, or, in the form of modern medicine - however God chooses! He is my Creator and he knows exactly what's going on in my body - He is Jehovah Rophe, the One who heals and makes whole. He also sends wonderful people to encourage me!)
God bless all of you, and I'll keep you posted as to what my GI doc says. Any further comments would be welcome! 
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Hi - The Citrucel should be fine, it's soluble fiber. It's the insoluble fiber you need to be careful with. You can still eat it, but follow the guidelines: cook, peel, mash fruits and veggies, puree beans and nuts, and combine with soluble fiber.
I'm looking into putting up an IBD board for folks. I think there is a demand for that.
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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ThankyouThankyouThankyou, Heather, for your reply! It was encouraging! I will stick with the Citrucel and gradually add small amounts of the cooked, mashed / pureed fruits & veggies (and legumes like lentils, split peas, blackeyed peas, chickpeas??). I need to improve my nutrition!
Regarding the IBD board - GO FOR IT! In between my two posts, I found the Crohn's & Colitis Foundation of America website (www.ccfca.org) and got some information, but your message board is outstanding. I believe one for IBD patients would be well received! Your IBS board, in fact, is the best message board of ANY category I've ever used - so user-friendly and well organized - and, of course, the nicest members! Your personal, hands-on approach, Heather, really makes a difference - you actively contribute to the well-being of everyone who participates and your timely replies are sent from Heaven!
May God bless you and supply all your needs!
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Gosh, thanks! I'm really glad you like the boards - I love to hear that!
I'm going to work on the IBD addition - I have someone in mind for the moderator but I have a web project to work on first, then I'll tackle that.
- Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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