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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You're welcome, Heather - I look forward to the IBD board when it's up and running.
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I was diagnosed with Crohn's disease about a year ago, and remember feeling exactly the way you do. I was so sick and weak and scared to death that I wouldn't be able to work. Adding to the problem was that my first doctor gave me the impression that I would completely recover and this would all be in the past. Luckily with the help of a new doctor, I learned to accept that this was something I would have to adjust to for the rest of my life, but that I would eventually feel better. I remember lying in bed and not even being able to keep water down, but eventually with the right medication and gradually introducing safe food into my diet, I was able to eat again. Heather recommended the fish oil supplements, and I have read this also. I never used it, but for some reason the one food my body always seemed to accept when I was sick was tuna. I think in some way my body knew what it needed. I hope you are starting to feel better by the time you get this post, but if not trust me it will get better.
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Thank you SO much for your reply! I really need the encouragement - the IBS / colitis double-whammy is not too much fun. I'm taking Asacol for the colits and dicyclomine for the IBS / spasms. I'm still eating a very limited diet - and have been craving tuna! I really love tuna patties (better than veggie burgers) but I've been afraid to try any type of tuna. I'm going to be brave and try them this weekend - modifying the recipe, of course. I'm training for a call-center job right now, at FedEx, and it's very stressful - but I would love to be hired permanently there. The people are very nice, but I just pack my cooler and eat in my car - besides the limited diet, I need the extra rest in the middle of the day. Mornings are my worst time, typically, and it's hard to adjust to the new, early hours. Again, thank you so much for your reply - and it was actually a "gift" - today's my 51st birthday! YAY!
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I know this is totally off topic...but do you have a stiff screening process for Fedex because I have never
met an ugly FEDEX guy! We have the best FEDEX delivery man! Ooooolala!
Every week we ship a package to the US and he always comes in! I am beginning to love Thursdays LOL.
Lana_Marie
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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I'm taking Colazal for my Crohn's and Librax for the IBS. I've started to decrease the Librax and my doctor says I should be able to stop it eventually and only use it when needed. Make sure you take your Pentasa as directed everyday. I made the mistake in the beginning of my Crohn's diagnosis of not always taking my meds and I paid for it. I have the most trouble in the mornings too, and I read somewhere that it's because we've been inactive while we sleep. I find that if I push my self to do a little physical activity, like walking or even just straightening up the house, I start to feel better. Stress is also a huge factor for me. I moved about 6 months after being diagnosed and when I needed to get a new job, actually decided to take something that was less pressure. I'm also a big control freak and I had to accept that I can't control everything, and need to make adjustments and change accordingly. My husband just had a kidney transplant about a month ago, and I actually got through the surgery, hospital stay and his recovery without any major problems. I've accepted that my house may not always look perfect and I may not be the star employee at work, but after feeling as sick as I was a year ago I realize that those things are not really that important.
I read the book that Heather suggested on your first year w/ IBD. It's very informative and covers a lot of topics I hadn't even thought about.
Hope the tuna works out for you, and I hope you had a great birthday!
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Thanks so much for the reply! My birthday was great - flowers from nieces & nephews, along with a lot of cards!
About the meds - Is Pentasa the same as Asacol? Also, I asked my doctor (primary care - not GI) about Librax, because I had been given that about 25 years ago, when they called it "spastic colon". She wouldn't prescribe it. I think I'll look into it and ask the GI doctor when I see her in a couple of months. Regarding jobs and stress: the first week of training at FedEx is almost over, and each day has been a little worse - more bloating, and today, near the end of class, I felt warm and faint - and tonight I had to take Imodium after dinner because I recognized the gurgling, mild cramping & soft BM as a warning sign that tomorrow might not be so great! And, I absolutely have to show up every day during training - which will be another 3 weeks, then on-the-floor coaching for 60 days! It's definitely not a low-stress job, but the pay is better than average and so are the benefits. Right now, that's a huge consideration for me! The job market is so tight here. Getting physical activity is a definite challenge now, too - seem to need more rest! However, FedEx has a tiny fitness room with a treadmill and recumbent bike which I can use. Maybe I could use it a few minutes before work - that might help in the morning.
Anyway, thanks again for sharing your info and for the birthday hello!
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Gee, I haven't noticed "good-looking" as a requirement! All the couriers I've met so far are women! But it reminds me of something funny: one day, I was volunteering to sit at the reception desk at church, on a Monday, and I didn't know the new secretary well at all. A UPS driver came into the office, with a bouquet of roses! He said he had a delivery for "Joanie" - well, she came out of her cubicle and walked up and took the roses - and then she wrapped her arms around him and gave him a long kiss! I didn't know what to think! When they turned around and saw me, they burst out laughing - that's when I found out they had just gotten engaged over the weekend! They said "if you could have seen your face!" - I was sure I was on Candid Camera! I'll keep my eyes peeled for the good-looking FedEx guys now that you've brought this to my attention! At my "advancing" age, not sure I'm too interested - but always nice to see a "good face" as my little niece calls it!
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I'm not sure, but I think that Pentasa, Colazal and Asacol are all in the same classification of drugs. I used to take Pentasa but then my doctor switched me to Colazal. I think it might have something to do with where your inflamation is located. I also took Entocort for awhile which is a steroid, but does not have all the side effects of prednisone. The Librax has helped me some, but I'm trying to get off of it because it makes me sleepy. I know the meds are important for the IBD, but I find the diet is more important for the IBS.
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Happy birthday to you, happy birthday to you, happy birthday Kaybee C! Happy birthday to you (and many more)!!!!!
*hugs*
Ruchie
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Formerly known as Ruchie
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Thank you so much! What a nice board this is! As for the "many more" - I hope time goes a little more slowly for the 2nd half!
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Thanks for the nice reply - I forgot that Librax causes drowsiness, and that's probably why she won't prescribe it since she wants me to be on an antidepressant.
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KBC - Happy birthday. Are we now considered "over the Hill" when we are in our 50's??? To me (I'm 58) old is 90. When I was a teenager, old was 25!!
Here's a site on crohn's and ulcerative colitis: http://www.ccfc.ca/en/info/ibd.html
Did your doc say you had ulcerative colitis? Just curious.
Sharon
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Sharon
"Anything Chocolate"...that is all!
Edited by SharonMello (04/11/03 04:26 PM)
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Ruchie - you just kill me!!!! You're always so UP!! I love it.
Sharon      
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Sharon
"Anything Chocolate"...that is all!
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Thanks for the greeting, Sharon! No, we're definitely NOT over the hill! As for the colitis: the doctor didn't specifically say "ulcerative" - just "mild acute colitis" - I have to see her in about 8 weeks and get the details. Right now, I'm just taking the meds and praying that I can keep my new job (actually, I have to pass the training classes first - will know middle of May).
Blessings to you,
Kaybee
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KBC - I noticed a while ago you were job hunting. What kind of job did you find?
Sharon
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Sharon
"Anything Chocolate"...that is all!
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Hi, Sharon -
I'll bet you're a treat to know! You certainly have the gift of encouragement.
The job is in a FedEx call-center. It's the "door-opener" so to speak for FedEx - but the training alone is really stressful. I'm functionally deaf and wear "in-the-canal" hearing aids (Meniere's Disease plus neuro-sensory hearing loss), so just trying to keep up in class is a challenge. On the job, I would be wearing headphones which direct the sound directly into my hearing aid microphones, so it wouldn't be such an issue. Being tied to the chair/computer on a very structured schedule may be the bigger challenge - along with not being able to miss any days the first two months. Just praying for no attacks during the day! During my marriage (15 years together, separated for 5 ), I really only worked a few years at the beginning, so my skill-set isn't as broad as employers are looking for right now. I'd love to go back to school to finish my degree and / or learn some quantifiable skills - but just need to pay bills right now.
By the way, I enjoy flower arranging - have been making the table / stage decorations for a monthly graduation banquet for a drug & alcohol rehab residential program for about 3 years - one of the most rewarding, enjoyable things I've ever done. When I have time, I'd like to take a course in floral design - I'm running out of ideas! Actually, I probably won't be able to do the banquets anymore - I'm on a leave right now - because of my job. My former employer let me have the day off each month for the banquet. (That was a great job - researching destinations and helping plan / prepare itineraries at a very prestigious travel agency. Lost it ten days after 9/11).
Blessings,
Kaybee
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I'm down to only oatmeal, frozen vegies, & chicken breast.
& still get ill on these! what do you suggest?
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Fonda,
Do you have UC? The only thing that helped me get well again...no meds or symptoms, was changing my diet/lifestyle. In a nutshell, I eliminated all grains, alcohol,sugar and processed foods for a period of time. Now I eat all foods again, but the foods listed above in moderation. Your question may be more suited for the Crohn's/colitis forum as the IBS diet is different than what I mentioned here. Email me if you wish. Don't want to confuse any IBSers here.
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