Not the most auspicious start to 2019

For posting new case histories and updates to histories only. Do not post general messages, replies or questions here.
LiamB
Brand New Poster
Posts: 4
Joined: Wed Mar 06, 2019 5:26 am

Not the most auspicious start to 2019

Postby LiamB » Wed Mar 06, 2019 5:41 am

Hello All,

I am a 44 YO male living in the UK married with 3 sons. I have had Crohn's Disease for the last 20 years with 1 surgery but it has been a walk in the park compared to my experience with C-Diff.

Last year I had several courses of antibiotics for sore throats and an unexplained skin infection. I recall things not feeling right with my bowels shortly afterwards but I assumed it was a Crohn's flare as did my longstanding GI doctor who upped the Remicade dose and put me on a prednisolone taper. Needless to say things got somewhat worse with several accidents including one on the train going to work in London and eventually in early December I was diagnosed with C-Diff. I had an initial course of Vancomycin for 10 days and things improved until just before Christmas when intestinal Armageddon happened. I had a trip to A & E where they gave me iv fluids and I was then shortly after started on a month long Vancomycin course as the c-diff had come back for a second time. I went back to work for 3 weeks until 2 weeks ago the symptoms came back with a vengeance, as had the c-diff.

I am now on a 3rd course of vancomycin with an FMT scheduled for the 9th April. I hadn't realised how debilitating this disease can be both emotionally and physically and how it has affected so many people. I have high hopes for the FMT and getting back to some semblance of normality soon.

Thoughts and prayers for all going through this or similar.

roy
Long Time Contributor
Posts: 3530
Joined: Sat Aug 02, 2014 1:05 am

Re: Not the most auspicious start to 2019

Postby roy » Wed Mar 06, 2019 6:04 am

Many UK hospitals dont prescribe Dificid (Dificlir in the UK or generic name Fidaxomycin) it's because of the cost.
You might want to mention that treatment option.
FMT has good results so with average luck it will work.
Normaly you would stay on Vanco untill 48 hours before the procedure, some Drs would prescribe immodium just before and just after the FMT to help you retain it.
Out of interest are you supplying your own donor or are they obtaining a 3rd party bag of poop?
I am in UK.

LiamB
Brand New Poster
Posts: 4
Joined: Wed Mar 06, 2019 5:26 am

Re: Not the most auspicious start to 2019

Postby LiamB » Wed Mar 06, 2019 6:30 am

Hi Roy,

Thanks for the reply and the tips. I am due to finish the Vanco on the 2nd April (28 day course) and then the FMT is on the 9th April. The donor stool comes from Birmingham area so I don't need to supply my own. I live in south Hampshire so the stool bank must cover a wide area. Speaking to the nurse this morning she said that the GI consultant has done 1 previously with another Crohn's/c-diff patient and it has been (fingers crossed) a success so I am cautiously optimistic.

I'm just trying to "keep on trucking" as much as possible between now and then.

Kind Regards,

Liam

roy
Long Time Contributor
Posts: 3530
Joined: Sat Aug 02, 2014 1:05 am

Re: Not the most auspicious start to 2019

Postby roy » Wed Mar 06, 2019 6:58 am

I would be concerned about the 7 days off meds before the FMT.
Typically c.diff has enough time to regrow in 7 days.
Check if they might consider it prudent to put you on another 5 days.
The aim is to be symptom free at the time of the FMT and for the transplanted bacteria to be able to grow faster than the emerging c.diff.
What your Drs currently doing is giving c.diff a 7 day head start!
UK Drs dont do many FMT procedures, US and Australian Drs are more experianced and most do the above routine.

LiamB
Brand New Poster
Posts: 4
Joined: Wed Mar 06, 2019 5:26 am

Re: Not the most auspicious start to 2019

Postby LiamB » Thu Mar 07, 2019 4:00 am

Thanks Roy. I have got an appointment with the GI doctor next Thursday so I will definitely ask as you suggest regarding the Vancomycin.

LiamB
Brand New Poster
Posts: 4
Joined: Wed Mar 06, 2019 5:26 am

Re: Not the most auspicious start to 2019

Postby LiamB » Mon Mar 11, 2019 5:27 am

Hi Roy,

Do you think it would be worthwhile asking the consultant about fidaxomicin as well or am I too far down the vancomycin/FMT road now for that to be a sensible option?

Kind Regards,

Liam

roy
Long Time Contributor
Posts: 3530
Joined: Sat Aug 02, 2014 1:05 am

Re: Not the most auspicious start to 2019

Postby roy » Mon Mar 11, 2019 5:53 am

FMT has the highest cure rate so that would be my treatment of choice.
I would make sure I was taking vanco untill 48 hours before the FMT.
I would be taking a maximum allowable dose of immodium the morning of the FMT. (after the bowel prep has finished working) (that bits super fun :-)))
Check with your Dr, he might think it's a good idea.
Fidaxomycin is considered superior to Vancomycin if it's used as a first line of treatment but posters report good results even if it's used after vancomycin has failed.
If the FMT failed then I would want fidaxomycin so that any "good flora" introduced during the FMT was not destroyed.


Return to “Case Histories and Updates”



Who is online

Users browsing this forum: No registered users and 1 guest