Remicade to treat collagenous colitis

[mini]

Hi Erin

I really do believe in a link between Prozac and flaring with D. I had been off Prozac for some time and my recent flare seem to start the same time that I went back on that medication. Although this illness has seen the level of depression increase at the moment I am avoiding all anti-depressants. A few years back when I was told it was IBS one of my GP's put me on Dosulpin a tricycle now this did seem to work very well the D eased back a lot and also my sleep improved.

[Pat]

Cheryl,
Be careful not to take any antibiotics unless you have the tests first. My previous doctor just had me take the Neomycin without testing me and it made me 10 times worse. If he had just done the tests which I later did. He would have found I did not have the bacterial overgrowth and did not need the antibiotics. It is a good idea to get tested.

Mini,
Thanks for your response. I guess time will tell about the side effects.

Pat

[mini]

I would agree with Pat on this one.

[mini]

[quote="tex"]Erin,

FYI, the leg and foot cramping, and crying too easily, must be a part of the "side benefits" that we get from MC. I have never taken any cortocisteroids, and yet I had all those symptoms, and they were pretty significant, too.

I've been in remission for several years now, but I still find that just reading a lot of the posts here, will make me all misty-eyed sometimes, or worse. Before the advent of my symptoms, I never cried, and I do mean never, (well, except as an infant, of course). I firmly believe that MC makes permanent changes not only to our bodies, but to our mindset, and our way of thinking, as well.

Tex[/quote]

LOL Tex I like that one the 'side benefits from having MC'

[ccruicks@shaw.ca]

Thanks friends.
The Immodium X8 per day has not helped one iota, nor has the ratio codeine, except to ease the cramping, which us not what it's intended purpose is.
I hate waking up to this pain and having to go to the toilet during the night. Wayne suggests a gluten-dairy free diet may be the only answer.
Anyways I'm off for more lab work and am supposed to be in touch with the gastroenterologist.
I really feel that this condition stems from harmful bacteria I have ingested through drinking water and food poisoning. As a kid, I drank well water at school that tasted like cow dung, as the cows were pastured in the schoolyard. I also recall being violently ill after stopping to drink from a mountain waterfall as a teen. I was treated with flagell for possible giardia.
Over the years the breaks between have been few.
In the past I also have tried a live bacteria probiotic called VSL #6, which provided a short lived remission.

[mle_ii]

Thanks friends.
The Immodium X8 per day has not helped one iota, nor has the ratio codeine, except to ease the cramping, which us not what it's intended purpose is.
I hate waking up to this pain and having to go to the toilet during the night. Wayne suggests a gluten-dairy free diet may be the only answer.
Anyways I'm off for more lab work and am supposed to be in touch with the gastroenterologist.
I really feel that this condition stems from harmful bacteria I have ingested through drinking water and food poisoning. As a kid, I drank well water at school that tasted like cow dung, as the cows were pastured in the schoolyard. I also recall being violently ill after stopping to drink from a mountain waterfall as a teen. I was treated with flagell for possible giardia.
Over the years the breaks between have been few.
In the past I also have tried a live bacteria probiotic called VSL #6, which provided a short lived remission.

This was my thinking. An antibiotic like Xifaxin while taking VSL#3 and then continuing VSL#3 for awhile post anti-biotic along with a prokinetic such as a nightly low dose Erythromycin might just kick this problem to the curb. You might have to get the Erythromycin compounded as this drug normally comes with a bunch of other junk you don't need and this junk can be problematic for us. It's pretty cheap, I was qouted at $45 for a 3 months perscription. The Xifaxin is NOT cheap though. :(

More info here on Erythromycin and Xifaxin:
http://en.wikipedia.org/wiki/Erythromycin
http://en.wikipedia.org/wiki/Xifaxin

HTH,
Mike

PS. I'd add in what Tex mentioned as even if you don't have antibodies to gliadin/gluten they can still be problematic in leaky gut as well as food for bacteria.

PPS. This sounds a lot like Post Infectious IBS, which the prokinetic might help get back into normal gut function once you clear up the overgrowth which it sounds like you have.

[Pat]

The bacterial overgrowth does sound suspicious but I would still get tested first. I can't tell you how sick I was after taking Neomycin. Well, yes I can. I was very nauseous and finally began throwing up. The D became 10 times worse and continued until recently when I started taking Prednisone. Immodium 9 a day didn't help. The Lomotil (8/day) helped but I also quit Fructose, took Diflucan, started eating gluten, casein, and soy free and VSL #3 ( The VSL#3 I quit recently after finding out it does contain dairy). I know what you are going through. I actually hope for you that it is a bacterial infection. If it is, then the antibiotics will help. Then find an appropriate probiotic.

Pat

[mle_ii]

The bacterial overgrowth does sound suspicious but I would still get tested first. I can't tell you how sick I was after taking Neomycin. Well, yes I can. I was very nauseous and finally began throwing up. The D became 10 times worse and continued until recently when I started taking Prednisone. Immodium 9 a day didn't help. The Lomotil (8/day) helped but I also quit Fructose, took Diflucan, started eating gluten, casein, and soy free and VSL #3 ( The VSL#3 I quit recently after finding out it does contain dairy). I know what you are going through. I actually hope for you that it is a bacterial infection. If it is, then the antibiotics will help. Then find an appropriate probiotic.

Pat

Yes I agree. First neomycin is definitly not the antibiotic I would have said was ok, if anything I'd say Rifaxamin. Second, I'd like to see other options besides antibiotics, I have a couple that I'm working on but need more research. And definitly a good probiotic is best after any antibiotic. In fact a recent study showed that yogurt containing bacteria wasn't good enough, specfically with regards to post antibiotic diarrhea. Only a more potentent probiotic helped.

Mike

[ccruicks@shaw.ca]

It looks like I'm going on Entocort. Has anyone gone this route before? If so, what was the effectiveness and for how long?
Were there any noticeable side effects?
My doc tells me that I won't gain weight or develop a moon face. Will it affect my sleep? moods?
Cheryl

[ccruicks@shaw.ca]

ErinD
HI Erin,
Just rereading the posts.
My doc is starting me on Entocort. Would you mind letting me know about your experiences with this drug?
Thanks.
Cheryl

[greengirl78]

Hi Cheryl,

Not to hop in the middle of a discussion, but I was started on Entocort 8 days ago. I haven't really had too many awful side effects, just a little insomnia. Besides that, the months of the big D have cleared up! (at least for the last two days). I am a little spacy, and have been off balance a little, but that's okay ... so long as the D is gone.

Best of luck to you on Entocort. I hope it helps to clear this up for you, as it sounds like you have been suffering for far too long.

[ccruicks@shaw.ca]

Hi GreenGirl,
The Kenwood Chef and cow sounds have ceased emanating from my gut after about a week on Entocort-truly amazing! My doc has me on a three month supply. Then I don't know what ...
Like you, I'm having major sleep problems, night sweats followed by chills, and my brain feels a little swollen. I have to watch my emotions too, as I find myself a tad more testy.
I'm worried about putting on weight and developing a moon face. My doc tells me that Entocort targets the gut only, so this shouldn't happen.
Thanks for responding.
Keep well.
Cheryl

[greengirl78]

Hi Cheryl,

Oh how I know those awful noises! I thought they were with me for life, however, over the past two days, they have gone missing. Yay! I am on the same treatment plan as you, and it looks like we started on the same day. I think my nurse said Asacol after the Entocort, but I can't remember. (I received the diagnosis over the phone, at work, from the nurse... I was stunned to say the least.)

I have the same issues at night as you are having, you described it to a tee. I did sleep well the night before last, but last night I woke up alot.

Oh, the emotions - I have been finding I am bit more testy too, to put it politely. I am usually pretty quiet, and easy going. Today though, I became a bit angry at work, and let everyone know. Whoops. I guess so long as we are aware of it, we can make efforts to control it, right?

Take care.

[ccruicks@shaw.ca]

Hi GreenGirl,
It's somehpw comforting to know that someone else out there is going thru the same sh___.
I feel much stronger, but still out of sorts, balance wise. I'm actually experiencing constipation for the first time in years. I notice that my body chemistry is changing. I feel and smell differently.
I am a little ore energetic, but my mid-back is aching. I also need to watch my emotions. It's like PMS all over again.
Love your quote.
Keep feeling well.
Cheryl

[ccruicks@shaw.ca]

P.S. GreenGirl,
I was previously on Asacol X8per day. The tablets passed through only partially digested.