New Here; My Story

If you have had or are considering an FMT please share your experiences here.
lkbeck
New User
Posts: 14
Joined: Mon May 08, 2017 11:25 pm

New Here; My Story

Postby lkbeck » Tue May 09, 2017 12:28 am

Hello everyone,
I am a 23 yr old female. My name is Lauren, I have always had many health problems growing up. Been on and off antibiotics for 4 years of my life, this last March was when I was first diagnosed with C-diff. It was a rare and odd occurrence that happened in my case. It was not the classical case as it is for most people. Back in December I was put on 2 rounds of Amoxicillin and then after that Cipro for ten days due to a Bronchitis infection. Fast forwarding to March then all the sudden one night I got extreme pain shooting up and down from my chest to my pubic bone. Every 30 minutes these pain spikes would come. I ended up with 3 hrs of sleep that night. The weirdest part, was it was like having diarrhea but constipation at the same time until I went to the bathroom 4 times. The next day I went to the doctor telling her how terrible it was, she laughed at me stating it was food poisoning. The week progressed and I had this strange constipation well form painful bowl movements, they then had blood and mucus on them. I ended up in the ER they did a CT scan and thought it had been appendicitis. Found out I had a cyst on my right ovary and the doctor told me I believe you have C-diff. Test results came back and it was positive. First round was Fagyl, this did not work and a week later it was back. Second round was Vanco. This did not work, week later it was back again with finally the real diarrheal episodes and virus on top of it with fevers of 103. Put on Vanco still and now transitioning into getting a FMT. I have my first appointment with my doctor May 23 and hopefully I can have the FMT ASAP. My questions are what to expect, how painful it is, do they put you under, what % rate after the FMT is it possible if you HAD to be placed on antibiotics would be that you would have C-diff return? I have been fairly depressed and feel that this illness is a disease more then a infection. Due to the fact that you have to worry about it for the rest of your life. How is this not classified as a disease? Also what kind of diet should I be on while having c-diff? Should I still be taking kefir and yogurt to help my gut? This illness has made me so depressed and feeling helpless, and I know no one who can relate.

beth22
Long Time Contributor
Posts: 9396
Joined: Tue Apr 07, 2009 2:23 pm

Re: New Here; My Story

Postby beth22 » Tue May 09, 2017 1:51 am

Hi Ikbeck and welcome to the site. Please read the first forum for posting guidelines and more information.

I, too, had the C and D mix when I was first sick with c difficile and after trying many rounds of vanco because of relapses, I got an FMT. FMT does not guarantee that you will not get c diff again if you take antibiotics for something else. I did and got a terrible relapse. Some people need more than one FMT. I did.

The FMT is not painful. I assume you will be getting one via a colonoscopy. It is the same prep as for a regular colonoscopy. The worst part is the prep and drinking the laxative solution and having to clean out your intestines. You are sedated for the procedure. I woke up clear-headed and did not remember any of it. Diet is individual. Some people can eat dairy like yogurt and kefir and others can't. I could at the beginning, but then was unable to tolerate any dairy. Later, I had problems with fruit and vegetables. I never had issues with meats or starches.

You are right in that c difficile should be considered a disease because it affects your body a lot. Many people get vitamin and mineral deficiencies, have trouble sleeping, suffer from depression, have heart palpitations, among other things. We totally understand your feeling isolated and depressed. Not many people have heard of c difficile and think it is just like having a stomach flu, but it isn't.

I hope you feel better and that you are able to get your FMT. Write down all the questions you have for your doctor so that you don't forget to ask them and see what he/she tells you.

MKW
Regular Contributor
Posts: 341
Joined: Mon Sep 26, 2016 9:49 am

Re: New Here; My Story

Postby MKW » Wed May 10, 2017 10:55 pm

Hi Ikbeck, you made a very wise statement that this should be considered a disease. I am 10 weeks since an FMT and still doing well, but I certainly feel like I have a permanent condition. Knowing that I will inevitably have to take an antibiotic again sooner or later, and could have to go through this again is beyond distressing... and that's if I have made it out this time. I just got a new Primary Care Physician and had to explain my whole situation to him. I discussed the anxiety with him, and he says I seem to have symptoms of PTSD. Really. ... I want to tell you I had a great experience with my FMT all in all. I am a 45 year old female, was treated with Flagyl twice, and Vanco with taper twice over a 7 month period. I decided to do the FMT at the end of my last Vanco taper. The procedure was fine. It was done by colonoscopy with the donation from OpenBiome. I was worried about the bowel prep but got through it without any weird symptoms or pain. They put me out cold with propofol. When I woke up I was lucid, and able to converse with my doctor and such. I was given Immodium after the procedure, and I was alert and felt well. For me, I felt amazingly well immediately after the procedure. Based on my personal experience, I feel it is a crime this procedure is not done sooner for recurrent sufferers. I have felt healthy since, whereas on the Vanco I didn't... I just had the absence of D. That's not a state of health and that doesn't mean you are healing. My doctor told me my entire colon was inflamed, yet I had been on Vanco for 8 weeks. I feel I have healed since the FMT. I have had some bad days, and D a few times and freaked and went and got tested... but no C Diff recurrence so far. So, just try to tell yourself it's going to get better soon, and that the success rate with FMT is very high. Make sure you get enough Vitamin C and E each day which are important for your immune system function. We end up with so many food intolerances, that we don't end up with proper nutrition with this. Also, I believe with all the research into it, that at some point we will see formulated microbiome restorative pills or enemas that are FDA approved for people like us.

lkbeck
New User
Posts: 14
Joined: Mon May 08, 2017 11:25 pm

Re: New Here; My Story

Postby lkbeck » Thu May 11, 2017 2:25 am

Thanks Beth! Well thats upsetting to hear, was it the first time after you took antibiotics from having the FMT? Thats what I am terrified about most, and its almost impossible to never have to take them again. This is my exact point as to why I believe it is a illness that we continue to have to live in fear and whenever I have brought this up to a doctor they are smug and say well its not part of your DNA. But it basically is once you contract it... Do you know how long it takes when you see the infectious doctor to get the FMT set up? I never had problems with dairy so now I am concerned I won't ever be able to eat dairy again. With my food allergies its one of the few things my body does not have problems with. I noticed I have been having heart palpitations but I was not certain on whether it was the Vanco or not. Is that an after effect? I am so upset because when I did talk to my GI he told me that there is no problems and after effects that C-diff has on people. It makes me angry because how can a GI say this? Are they all not aware of what C-diff can do? I definitely will do that!

Thank you MKW, you make me feel like I am less crazy, I too feel continuously anxious for the future even after I can get this transplant. What is immodium? Is this another drug? I totally agree also I feel like this should altogether be treated with FMT's. What would you recommend for brand supplements that you use? Thats what I fear I already have so many food allergies that I feel I will be able to eat nothing after this done with if ever.

MKW
Regular Contributor
Posts: 341
Joined: Mon Sep 26, 2016 9:49 am

Re: New Here; My Story

Postby MKW » Thu May 11, 2017 1:48 pm

Hi, Immodium is just an over the counter anti-diarrheal. They give it to you so you can retain the stool transplant as long as possible. Ask about this if you end up scheduled for an FMT. Some doctors give it before and after the procedure, and some only after.
Probiotic supplements that many people take are VSL 3, and Florastor. Florastor is a yeast probiotic so is not killed off by the antibiotics. Personally, I drink Organic Lifeway Kefir. Lots of it. I started doing this during my first Vanco taper. Kefir is loaded with good bacteria, and 99% lactose free. I have never had any digestive issues with it, although some people do.
I have dealt with several ignorant doctors since the beginning of my C Diff. They just have no experience with it. They are guessing. When I read posts from people on here who have received their care from doctors experienced with recurrent C Diff, I get so envious. I had to go out of town to find a competent doctor and one who performs FMT's. Your doctor is probably trying to get you to not worry and think the worst. But many people end up with post-infectious IBS and food intolerances, and other issues like anxiety. This doesn't mean you will, but it certainly happens. And that doesn't mean those issues will be permanent, but it may take months or more to heal.
As far as how long it takes to get scheduled for an FMT if the doctor decides to go that route, it can be weeks to months. It all depends on how busy they are, and from what I've seen on here it really varies. I've seen 2 weeks to 4 months from posters on here. I was kept on a Vanco taper until 48 hours before my procedure. FMT's are most effective if performed following a medication round that has kept the C Diff under control.


Return to “FMT Discussion”



Who is online

Users browsing this forum: No registered users and 1 guest