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Hello

glum chump

glum chump

I was diagnosed with Crohn's in 2002, although the symptoms started appearing a couple of years before then. I also have MS (which is usually under control but not in remission) which was diagnosed in 1989. Prior to my diagnosis with Crohn's, I had also been treated (successfully!) for cervical cancer (I mention my other illnesses only because I wonder if people on this forum had other illnesses prior to being diagnosed with Crohn's).

I have a really good GI (although he did mention that he has a panic attack when he sees me in his waiting room...gulp!) and he's usually willing to try my "I read this on the internet" treatment schemes. I've tried Prednisone, Asacol, sulfazines, Cipro and Flagyl combination, Clarithromycin and Clindamycin combo, Flagyl and Clarithromycin combo, Remicade, Humira, and on clinical trial for Ustekinumab. Currently, I am taking Imuran and on clinical trials for Adalimumab.

Outside of these treatments, I also take Omega-3, calcium, Vitamin D, iron infusions, multivitamins, vitamin B12, marshmallow tea, cat's claw, and slippery elm.

Not sure what else to do...within the limits of energy and budget, I've tried to do all I can, but no relief in sight.

I've been reading some of the threads on the various forums, and its been nice to read/hear of others experience with this disease.

Thanks.
 
ameslouise

ameslouise

Moderator
Welcome Glum Chump! We hope we can cheer you up so you don't have to be so glum anymore!

Hope the Imuran and the clinical trial is the right cocktail mix for you and you can find some relief soon.

-Amy
 
Astra

Astra

Moderator
Hi Glum Chump
and welcome

No need to feel glum now mucker!! Lots of support here for you, and lots of advice too!
good luck with the Imuran and the trial
lotsa luv
Joan xx
 
glum chump

glum chump

Hi Amy, Joe, and Joan:

Thanks for your warm welcome! Just wanted to let you know that I'm more often a "chump" than glum...and the chump part isn't Crohn's related!

I found out today that I'm being placed on the "non-responsive" arm of the research trial. Not sure how much longer I'll stay on it...apparently, if I want to try another drug, I can no longer continue on the trial. Makes sense...

Joe, I did try the SCD plan...it didn't work for me either! It seems that all the list of "bad" foods are the foods that make me feel better...go figure! According to my last colonoscopy in March, the inflammation is primarily in the small bowel, although the GI saw some signs of it on parts of my colon. The colon isn't too bad, though.

Yes, surgery is an option, but I've been pushing it off for a while, and although my GI brings it up with me when he's feeling all out of options, he hasn't really urged me towards surgery. He did arrange for me to meet a surgeon a couple of years back, and the guy reminded me of a used car salesman ("you really need to get this surgery," "I have an opening next week so we should book you in now so you don't lose that spot" etc.). I did freak out a tad and left rather quickly! The only thing positive I could say about him was that he reminded me of the Count from Sesame Street!

I'll look through the forum boards a bit more, but I'm wondering if any of you have tried VLS#3 and what your experience with it might have been...

Thanks again...
 
D Bergy

D Bergy

You could try Low Dose Naltrexone. A few people here use it.

It works opposite of most Crohn's medications, in that it boosts the immune system instead of suppressing it.

Do a search here on LDN or Low Dose Naltrexone and take a look at the site below.

www.lowdosenaltrexone.org

Dan
 
glum chump

glum chump

Hi Dan:

I tried LDN a couple of years ago, but for MS and not Crohn's (hadn't realized that it was something that worked for Crohn's). I took 3mg, but I ended up having pretty bad involuntary leg spasms and had to discontinue LDN after three weeks. From the link that you pasted, it seems like LDN is something that builds up slowly in order to work, and I wasn't on it for very long at all.

I'll talk to my GI about it when I see him mid-June...my MS is slightly better than where it was a couple of years ago so perhaps this might be a good time to try again?

Thanks again for your suggestion.
 
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