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collagenous colitis -- please help

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Old 02-23-2003, 10:58 PM   #1
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Join Date: Feb 2003
Location: Pennsylvania , USA
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ppeach HB User
Unhappy collagenous colitis -- please help

Hello all! I was diagnosed with collagenous colitis about 6 months ago, and I am having an awful time with this. I have been sick off and on, but mostly on...missing work, feeling terrible and weak almost all the time. I have tried different treatments with pepto, asacol, and several other medications with no help at all!! I really am at wits end with this and am wondering how any of you cope or any suggestions. I am 27 years old and pretty much have become a hermit due to the embarrassing and uncontrollable diarrhea. I feel so alone in this battle and need to know if anybody has had success in treating this illness. Please help!

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Old 02-26-2003, 04:29 PM   #2
Join Date: Feb 2003
Posts: 7
Tali HB User

Hi P,

I've recently been diagnosed with cc as well. I am able to live a normal life(uncomfortable at times) with fiber supp's, probiotics, betaine for low stomach acid, and staying away from my allergenic foods--eggs, milk, chocolate, alcohol, etc. Will try going gluten free one of these days...could take a year to make a difference.

However, I still have 2-5 episodes per day, in the am most of the time. I've been considering the pepto bismol treatment of 8 chewable tablets daily for 8 weeks. This is supposed to stop the diarrhea for 8 out of 9 people. It's supposed to last if consuming no gluten. Is this the pepto treatment you tried? How was your experience?

Thanks for sharing,

Old 02-27-2003, 05:08 AM   #3
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Sarah68 HB User

I would urge a note of caution with taking Pepto Bismol for long periods. This contains aspirin and can make your stomach a whole lot worse over time.

Old 02-27-2003, 12:15 PM   #4
Join Date: Feb 2003
Posts: 7
Tali HB User

Thanks for the caution & info. I really, really don't want to take the PB--but this treatment protocol for cc is successful for most, so I'm just going to grin and bear it. Just for 8 weeks. It's better than taking steroids, anyways.


Old 02-28-2003, 03:50 AM   #5
Join Date: Feb 2003
Posts: 7
Tali HB User


If you come back to this board, please check out these links. Especially the newsletter archives. Many people tell of their successes or failures or just different things to try. Also, I'm really curious about your pepto experience! I've changed my mind again and am going to hold off on trying the that protocol.

The links-- [url=""][/url]
(*newsletter archives)
(cc and gluten-free links)
(Dr. Fine--specializes exclusively in CC/MC/LC)

Old 05-31-2003, 02:33 PM   #6
Join Date: May 2003
Location: Port Orange
Posts: 1
mygenie HB User

I too have recently been diagnosed with Collegenous Colitis after 2 years of going to different doctors before getting a diagnosis. Asacol did not work for me. Neither did Cholestromine. I am now taking Entecort which works some times. I have recently stopped eating anything Chocolate (Ouch!) Don't know yet if I am between episodes or if chocolate is my problem

Old 06-13-2003, 04:55 PM   #7
Join Date: Jun 2003
Location: S.C.
Posts: 1
Jbug HB User

Hi everyone I to have Collagenous Colitis. I just got this news yeaterday...oh boy....I have tried a gammit of otc's and several prescriptions up to this point. As in my case, some work for a few weeks and some do not work at all...the trial and error system. I've only been sick a year. I have cut out all cafine and lactose I think that no dairy, lactose, has helped. I'm on a new medication and the bismuth so far I'm doing some better, I did sleep through the night last. thanks for listining...I hope to learn more here. Good luck all, take care and may God Bless you.

"HOPE is the song in your Heart that sings it's tune without the words and NEVER stops."
"HOPE is the song in your Heart that sings it's tune without the words and NEVER stops."

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