Just in need of some advice/kind words

[Awalter5110]

Hello all, I am new to this site. Have had crohns colitis for 9 years now (i was 16 when I was diagnosed). I was on tons of meds when first diagnosed (entocort, pentasa, 6mp, iron, vitamin) and eventually got down to a maintainance dose of 6mp with a vitamin. I was in remission for years and felt great. Last year, I had a bad flare and was put on prednisone and lialda. Unfortunately I nevet did my research on lialda and I think that may have been my demise. It is a drug for UC, NOT crohns. My GI was convinced I had UC. Needless to say she was utterly wrong and now i've never been the same. Had a bad flare again in june after she did a colonoscopy/EGD on me and ended up in the hospital. GI docs there were convinced I had cdiff and treated me with vancomycin. WRONG again. Ended up back in the hospital (different one this time) and my GI told them to give me IV solumedrol for a few days and that should do the trick. Strike 3, shes out. Literally, I got a new GI. Ended up back in for a 3rd go, got a new GI, she did a flex sig and said my colon looked like raw hamburger meat. Yum. So more solumedrol and finally remicade. Ive been home for a few weeks now, have had 2 infusions so far, plus oral prednisone which has me looking like a fat hairy circus act. Had 2 abscesses on my bum and a surgeon put me on flagyl. Now since I started taking it my symptoms which had finally gone away have returned. Anyone have issues with flagyl? I went to the ER last night and they said my inflammation markers were finally in normal range (halleluja) so it could just be a little flare. I just really think it was the flagyl. Anyone else have this issue with flagyl? And anyone willing to offer advice or words of wisdom I am open to it. Thanks!

 

[glum chump]

Hi Awalter

Good for you for firing your GI! What a nightmare you've been through. I'm glad you finally got someone who can at least correctly diagnose you.

Flagyl. What can I say? I've been on it for long term, and like you, also had issues with abscesses, fistulas, fissures. Yes, many of the side effects of antibiotics like Flagyl can mimic the symptoms of Crohn's and I had a tough time on it. How long are you to be on Flagyl? Are your abscesses healing?

Remember to take Flagyl on a full stomach. The symptoms are way worse if you haven't eaten. Also, I found it helpful to eat little bits to constantly keep my tummy feeling full. Sometimes, Flagyl feels like it's scraping along your stomach in the same way hunger pangs do, and that feeling would send me straight to the bathroom.

I hope the symptoms subside really soon for you.

Take good care,

Kismet

 

[wendell]

Hello I am new here and have a question,I was recently diagnosed with crohns and am having some pain on my right side.Is this something I should be concerned with?I didnt know how to post my story either so any help on that to would be appreciated.Thanks much!!!

 

[Keepingfaith]

Awalter I'm so sorry your GI didn't treat you right(literally) :ywow: I'd be pretty dissapointed too!

As far as Flagyl goes, I love it and hate it. It is great for fistulas but mine always come back within months after treament. The Flagyl its self can also cause inflammation in the colon(oximoron, I know). That could be causng some of your symptoms. I hope you have been taking probiotics when put on Antibiotics. Also, lower your sugar intake, particularly when you are on Flagyl. It will wipe out the good bacteria and the bad bacteria FEED off sugar.


Take care! :heart:

 

[glum chump]

Wendell:

Click on "Your Story" subforum. You will notice a button that says "New Thread". Click on that and you'll find yourself on a page that allows you to give a title to your story and then write your story up. And then click on "Submit New Thread" to post your story.

Hope that helps...

Kismet

 

[wendell]

Wendell:

Click on "Your Story" subforum. You will notice a button that says "New Thread". Click on that and you'll find yourself on a page that allows you to give a title to your story and then write your story up. And then click on "Submit New Thread" to post your story.

Hope that helps...

Kismet

Thanks much:thumleft:

 

[EthanPSU]

Hey, another PA person, nice. I was the same with the Liadia. I have crohns and was put it and it did absolutly nothing. Couldn't stand that GI. I'm currently on Humira and its working like a charm. Anyways sorry to hear about the crap you've been going through. This forum is a great place to relate with people in the same boat!