New User. 24 Y/O Male with Crohn's and C.Diff

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TheAska
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New User. 24 Y/O Male with Crohn's and C.Diff

Postby TheAska » Sun Feb 04, 2018 2:40 pm

Hello,

I'm new to this forum. I just wanted to share my story with all of you. I have Crohn's Disease and an active and recurring c.diff infection. I have my Crohn's under control at the moment.

My story: Got c.diff when I was 16 the first time. I got into an accident and lost a couple of teeth, but put them back in my head. My doctor gave me amoxicillin for my first op on my mouth, then clindomycin for my second. Shortly after taking the second pill, I got severe diarrhea. Blood, extremely painful gas and bloating, loss of senses etc. It was bad and I thought I was going to die. I took Flagyl and it cleared away after about 12 days. I finished the pills at day 10 and still had symptoms, but they eventually just went away, temporarily. I had bowel troubles ever since.

Fast forward four years:I got diagnosed with Crohn's at age 20 after severe arthritis kicked in and had lots of bowel trouble. Scope revealed Moderate Crohn's. Took Remicade for a long time and felt great. Life was good for a long time. However, September of last year, I got very sick. Having green diarrhea every 45 minutes to an hour, so about 15 times a day I was going. I couldn't stop going. I got tested for c. diff and got Flagyl again. Felt a lot better, but symptoms returned three days after stopping them. I got put on Vancomycin for about 15 days and felt okay for about 2 weeks, then symptoms returned. I thought it was Crohn's because I tested negative, so I played it off. I took cholestyramine daily and it put everything back together. However, it got worse as expected over time. It took a whole week to get my dificid because my pharmacy wouldn't accept such an expensive medication. I found another one that did. I'm currently on Dificid but I don't think it's working. I also got Zinplava, along with still taking my Cholestyramine. I have been off my Remicade infusion for the past two weeks now.

I'm afraid at this point that it's going to never go away or that it will end up killing me in the long run. I don't have a fever currently, but I'm going, a lot. It's all steatorrhea (fatty, floaty and smelly stools). I'm getting tested soon, but I might need a taper dosage or an FMT. I would have to travel an hour away for an FMT, plus the prep which is going to be disastrous for me. Is this going to kill me?
Last edited by TheAska on Sun Feb 04, 2018 4:31 pm, edited 2 times in total.

roy
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby roy » Sun Feb 04, 2018 4:21 pm

Am I reading this correctly? are you still taking clidamycin!
If your taking clinda the chances of curing c.diff are probably close to ZERO.

TheAska
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby TheAska » Sun Feb 04, 2018 4:26 pm

No no, I was on it when I was 16. That's how I got it the first time. I would never take that horrible pill again!

Apologies, it was a typo. I fixed it now.

NanciT
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby NanciT » Sun Feb 04, 2018 6:30 pm

Hello and Welcome to the site Please read the first thread for all new posters

I thought the same as Roy, glad to hear you are NOT on Clindamycin. The history and current treatment of Crohns can complicate things and I hope you have an excellent GI that is working with you.
How long have you been on DIficid? For many of us it can take more than the 10 days and often a 30 day taper is used. Dificid worked for me after 5 relapses with Flagyl and Vanco, and 10 days DIficid. I went on a long taper and it finally worked. Check with your GI about it.

Many GI's and ID don't actually test, mine never did and went by symptoms. I also knew when it was back.
Difcid can be harsh and I am not clear on why you think it has not worked. While on it, call your GI about an actual taper

NanciT

beth22
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby beth22 » Sun Feb 04, 2018 10:39 pm

We had a poster a few years ago (bback) who had Crohn's and c difficile. She, like you, was on different medications for the c difficile. She finally had an FMT and last we heard from her, she was rid of the c diff and her Crohn's was in remission and not bothering her anymore. You might try to look up her old posts and send her a pm.

georgina
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby georgina » Mon Feb 05, 2018 2:09 am

Sorry you are having so many issues. As Beth said , there were quite a few posters (no necessarily on this site) that had both IBD and Cdiff and after several courses of meds they received FMT ( some of them more then one ) and they were finally cured of CDiff and IBD was in remission. Agree that the prep is the worst part but is crucial for the success of FMT. Also I have noticed that you had a infusion of Zinplava , that takes awhile to work and it only disables toxin B , it won't do anything if you have toxin A forming Cdiff. You could ask your doctor about a long course of Dificid , long courses of Dificid were successful when Vanco courses were failing.

TheAska
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby TheAska » Mon Feb 05, 2018 5:02 am

I have been on Dificid for about 5 full days now. Haven't shown too many signs of improvement. Sure, I'm going a little bit less than usual, maybe like 2-4 times a day with the Cholestyramine, but not 100% relief which was what was promised for me. I will try the taper and see how it goes.

Beth, I hope that can help out my issues if it comes to that. I will reach out to her!

Georgina, I hope I can get a taper if my insurance ok's it. I just want to be better. I finally have a great job and I could very well lose it due to being sick all the time.

roy
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby roy » Mon Feb 05, 2018 6:37 am

Dificid is a fairly new drug and there's not much info about taking it at the same times as Cholestyramine but it's fair to assume the info is the same as for vanco.
Cholestyramine binds Vanco as well as c.diff toxins, Cholestyramine stops Vanco working.
Cholestyramine is highly likely to bind Dificid.
If you take it you should space it between Dificid doses.
Cholestyramine is not a cure, it removes the toxin but the bacteria still multiplies.

TheAska
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby TheAska » Mon Feb 05, 2018 7:46 am

Do you think that may be the reason as to why I am not better?

I also take the Cholestyramine about 3 hours after taking the Difficid. My doctor said two hours in between, but I do 3 just to be safe.

NanciT
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Re: New User. 24 Y/O Male with Crohn's and C.Diff

Postby NanciT » Mon Feb 05, 2018 12:01 pm

Dificid did not make me feel 100%, I did continue with D while on the first 10 days, after relapse and I started once again it began to improve but slowly. I did not feel well on it, or off it for quite some time but it did rid me of CDIFF.
Everyone's experience is different. Review both FMT and Dificid with your GI and come up with the best plan for you.
NanciT


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