Long recovery with cdiff "gifts"...

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
sevla
Regular Contributor
Posts: 338
Joined: Mon May 25, 2015 11:30 am

Long recovery with cdiff "gifts"...

Postby sevla » Fri Oct 07, 2016 3:13 am

Here I am, up again unable to sleep becauss my face is on fire and I cannot stop itching it..

It took me four months to get rif of cdiff (four months until FMT). I am 13 months out and greateful that I am this far out. So why am I venting or complaning? The recovery has been brutal and the gifts that came along with cdiff life altering.

I have had PI IBS since August 2015 (when I had FMT). Some days really suck, still have mucus on occasions (less and less frequently), but I am used to it by now. I no longer give it a second thought if I poop 6 times a day (which is most days).

However, I am have a terrible time with allergies and my doctor is almost certain I have mast cell issues as a consequence of the massive infection. I am itchy 24/7, have had a permanent rash behind my years for over a year, have a cold allergy and can't be exposed to cold (get terrible hives from even washing vegetables in cold water)..and for the past 2 weeks I have not been able to sleep as my face is on fire all night long. I did some more reading about it, and most people with mast cell issues have a hard time at night because it's when the body tries to recover itself and the immune system goes into overdrive. I take antihistamines every day (which I also worry about), but very little help from it.

I am at work clawing at my face for the past fee days, it literally impacts how I go about my day.

I hate cdiff and all things related to it. I hate thst our bodies suffer so much after it... i hate to be afraid of infections every day and to have a phobia towards medical facilities..

Just sharing my experience and what I have read and found out about mast cells activation disorder so far. When madt cells are in overdrive they overproduce histamines which makes the body react to many things. Some symptoms include upset stomach (D), fatigue, depression, eczema, etc. This is something to keep in mind during your recovery because sometimes we don't have answers why the body is acting so crazy after such major infection.

Sorry for my rant..

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Long recovery with cdiff "gifts"...

Postby NanciT » Fri Oct 07, 2016 9:49 am

Hello Sevla

Sorry to read you have continued to have these problems. The post IBS can be difficult. I did not have an FMT, just treatment for 10 months and I continue with symptoms. As I was reading your post, I wonder if you have had a second opinion on the itchy rash? Just a different set of eyes that may have a different treatment for you? I have found my POST CDIFF problems are understood by...few! Just yesterday I saw my endocrinologist and had to explain the post cdiff symptoms have been terrible...she just brushed me off. It was clear she had no idea what I was talking about. Very frustrating.
It seems some go on and do great, other's it takes time to overcome complications from the infection.
Hope you feel better soon!!
NanciT

sevla
Regular Contributor
Posts: 338
Joined: Mon May 25, 2015 11:30 am

Re: Long recovery with cdiff "gifts"...

Postby sevla » Fri Oct 07, 2016 2:21 pm

Thank you, Nanci. Yes, doctors have no clue. This has really been an eye opener. So sorry that you are also among those with a rough recovery. I wonder if a long course of Dificid as we did can be part of the problem. Anyway, cdiff itself is like an atomic bomb that goes off in your gut - the most important organ in regards to immunity. That's why so many of us have all those other problems being triggered after this monster infection. It's amazing though, how some are fine after it and others not at all. I really believe that it is connected to our gut health prior to infection and overall bacteria and viral composition in the gut.

I read SOOO much about the gut and how it impacts everything in the body..all organs, including the chemistry in the brain, skin, adrenals, food intolerances, etc. My Integrative Medicine doctor has been great to really tackle the problem from a holistic approach and connecting the dots. However, the other doctors are almost useless. I went to 3 dermatologists for my skin issue (including the permanent rash behind the ears). They all say the same thing: seborrheic dermatitis..."here is a steroid cream and use it for 2 weeks and then as needed"... I never used it for 2 weeks, not even a week as I am too afraid of the systemic absorption and the impact in the gut flora.. it's like a catch 22..The same with the mast cells problems, you are supposed to have a super low diet on fermented foods so that the body does not produce as much histamine, however, for cdiff patients, we need to eat lots of fermented foods.. it's like a mission impossible to avoid one thing that triggers the other that then does not help the other, etc..! :-(

The other frustrating thing is that doctors do not think beyond their little square..they dont talk diet to you, just give you steroid cream.. If people dont know much about cdiff, mast cell stuff is another whole black hole in the doctors world. We have to be our own advocates and learn as much as we can from the world wide web and other sufferers.

Hope things get smoother for you as well!


Return to “Got a suggestion or complaint? Want to vent?”



Who is online

Users browsing this forum: No registered users and 24 guests