Hello,

I no longer have a colon (since 1984) and I seem to have continuous (chronic?) c-difficile.

I do not have exceptional or abnormal  diarrhea. I only experience bad stomach cramps and difficulty going to toilet (possibly from narrowing / partial blockage). Lots of gas pains.

Antibiotics (I have been on  vancomycin for 4 weeks now) are not helping. I still have c-difficile. I have formed stool since I started taking antibiotics.

In fact, c-difficile is rare in small intestine as it typically appears in colon.

The pain I have is moderate to severe at times.

Anybody have suggestions to get rid of this and hopefully feel better? Any advice would be greatly appreciated.

Thanks!

Solomin

Original Post

C. diff seems to be all too happy to take up residence in J-pouches. The state-of-the-art for cases that resist clearing up with vancomycin is FMT (fecal microbial transplant). It’s remarkably successful, and reasonably straightforward, though you have to get past the “yuck” factor.

I took S. boulardi after the c.diff was finally vanished from my j-pouch and never had that problem again. It took 8 months and around 5 prescriptions for Flagyl. I can no longer take Flagyl due to it's affect on my perpherial neuropathy. I wish I could have taken vanco. There is a hospital in Iowa, Mary Greely Hospital in Ames, that has pioneered fecal implant treatment.  They have a good donor and have frozen doses.  I assume they can be shipped on ice/dry ice. Just throwing this information in as you might want to check into it.  

This wasn't available when I was battling it. I think after vanco there isn't anything else unless you get it via IV.

Solomin, how are you doing now? I see you had been on Vanco for 4 weeks on the 17th. Has your Dr ever discussed the Fecal transplant with you?

I have C diff for the first time with the K-pouch. Symptoms seem the same, but it’s just been a week. 

Hope you get some more input on this, it’s a scary thing. Can’t imagine having this persistently.

The best to you!

Jan

 

 

 

Very glad to hear you are now negative!  Can see why you are still concerned, having it before.

Do you have stool tests only or blood tests also? Any scoping ? 

Sorry don’t want to seem too questioning, just no information out there for pouches.

It’s different with the K , makes intubation very hard with the gas in the pouch, most of the time I need to be lying down. And I set the clock to be sure I don’t sleep past 3hrs , as that makes it worse with gas and bloating 🥴

I had 2 prior J’s and the K 16 months now. Sure is different. 

Tolerating the Vanco well and will get a scope in a few weeks.Don’t really feel too bad. The suggestion for Xifaxan to prevent it has been given to me. Have you tried that? Have to take out a loan for it though 😆 haha.

Glad for you, always happy to hear good news for people, and you stay healthy for the Holidays 

Jan

 

 

Jan and Solomin,

Good to hear you are both doing better.  I can understand how you might be wondering if it is gone for good Solomin. There were several times when we thought it was over only for it to rear it's ugly head again. 

Xifaxan was one of the antibiotics I was rotating to treat pouchitis.  I tolerated it better than flagyl but it wasn't enough to keep pouchitis at bay.  Have you checked Cosco's price? A friend of mine got a different medication that was quoted at the insurance price of $400 per month at Walgreens.  She obtained it for around $50 at Cosco without running it through her insurance.

Some said we couldn't get it in a j-pouch and that was wrong. Getting it in the K-pouch doesn't surprise me either. They removed our colons but the part of the intestine that's acting in place of them takes on some of the same problems. I think it is the wicked U.C. continuing to attack us. 

First, to answer Jan's question (I do not mind answering anything), I had my stool investigated for c-diff. 

I have been fortunate to have been relatively healthy with my pouch. I originally had surgery, in 1984 at the age of 17, in the local children's hospital here in Montreal.

Fast forward 25 years later and I was having issues. Stomach pain and discomfort. It was discovered that anatomy of my pouch was all wrong and that a pouch reconstruction was recommended. I ended up going through the bag (1 year) and re-connection. Along the way, due to  incompetence, I developed compartment syndrome in both my legs during the 10 hour surgery. I had two fasciotomies (one per leg, legs sliced open), and damage was kept to a minimum.

I am relatively healthy now, although I experience constipation. No blockage, but it is hard for me to pass stool when more solid than liquid. Hopefully my pouch shape is okay. This is to be investigated.

 

 

Hello,

So , last day on the Vancomycin, hope it worked🥴 Will get a scope soon to check status.

Also came down with yeast issues. Terrible thrush, first time I’ve ever had a brown mouth, like a tobacco chewer,ugh.

on 200 mg Diffulcan once a week and Nystatin oral swish 4 times a day . 5 days now. Still ugly!

Any suggestions?

Jan

 

 

 

Hi Solomin, How are you doing? Still well I hope .

And can you give me some good examples,  I have tried the the normal routes on prior episodes of yeast, such as yogurts and probiotics. I have severe food allergies so that limits a lot of options.

I appreciate your input. Thank you

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