Post 2nd FMT

If you have had or are considering an FMT please share your experiences here.
CDnotME
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Post 2nd FMT

Postby CDnotME » Sun Jan 13, 2019 9:02 pm

Just needing to know this is “normal”. Most says I’m okay. Some days no BM’s, the next day 1 “Normal” BM, then the next I may have a BM with mucus, and a couple bouts of D then back to nothing the next day. Everyone says it can be all over the place for a while- just want to know that others have experienced this too.

I go into PANIC mode every time I have D. Even if it’s only a couple times then goes away. Thinking of going to therapy for PTSD.

My FMT was Dec. 21st and I’ve really only had two bouts Of D. But i can’t help but worry.

THANKS!

okaylo
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Re: Post 2nd FMT

Postby okaylo » Fri Feb 22, 2019 6:27 pm

You are not alone in this. I too have had two FMTs as my first one failed in June 2016 and then had the second in October 2016... My bowel habits were ALL over the map for a good year following the second FMT. I mean, they really still are unpredictable at times due to IBS but it has all gotten better with time. I promise you, it will.

It's not uncommon to panic every time you have D. It's a natural response given what we have gone through. I suffered for 10 months on antibiotics before my insurance agreed to do an FMT and even then needed a second to get well. It has been a long, long hard road and I still freak out when I have D and my mind automatically goes to that place of worry. I have to reason with myself and be realistic and just keep pushing forward telling myself I dont have cdiff.

What has helped me most is eating BLAND. While boring, it helps immensely as your gut continues to heal. Eating things that are hard to digest or hard on your gut just makes it have to work harder. Also, I would highly recommend going to therapy for PTSD. Cdiff is more than just a physical illness and takes a huge emotional and mental toll long after it is gone. Therapy has helped me so much and while it was hard work getting through it, I am grateful that I pushed myself to go because I have come so far from where I was before. To the point of where I wouldn't even pick something up off the floor worried about spores being on it to now now even thinking twice about picking something up most days.

I know your post is over a month old but I just wanted to let you know you are not alone. This site saved me in my darkest hours and I am still friends with many people on here who helped me along the way. Feel free to PM me any time.

Hoping for continued healing and happiness for you!

georgina
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Re: Post 2nd FMT

Postby georgina » Tue Feb 26, 2019 1:48 am

I too have had my second FMT last summer and it did not go well after it , i struggled with D every single day for the first two weeks after the FMt despite imodium and bland diet , it was bad, tests were negative, but eventually it slowed down and it got better although not normal. I still have IBS that can be pretty bad sometimes but as long as it's not Cdiff i can deal with it.Try not get overwhelmed by anxiety ,going into therapy might be a good idea.

Zapper
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Re: Post 2nd FMT

Postby Zapper » Wed Apr 03, 2019 12:01 pm

How are you doing so far? It took me 6+ months to feel "normal" after my 2nd fmt.I can now say I feel very close to how I was and it will be 2 years in May.
It is a long recovery for some.. do not be discouraged!

CDnotME
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Re: Post 2nd FMT

Postby CDnotME » Tue Apr 23, 2019 9:24 pm

April 21st was my 4 month mark. Still having bouts with IBS, mostly around my time of the month. Some days no BM’s and some das 2 or 3 with soft/loose stools. But it always goes back to formed after a couple days and Intry to eat bland. Also doing better with worry. I know post infectious IBS is a REAL thing. I’m so grateful my stomach hasn’t caused me much disruption of my normal life these days. Praying it stays that way and I continue to heal! Please send prayers and good vibes! Any “tips” on helping with the IBS would be so so helpful!

Obreezy
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Re: Post 2nd FMT

Postby Obreezy » Tue Apr 23, 2019 10:52 pm

Congrats on 4 months! I’m also about 4 months out since treatment. The two things that have helped me the most with IBS are 1) adding in more soluble fiber and 2) cutting back on probiotics.

I started taking benefiber about 3 weeks ago and it has helped a lot with my BM frequency and firming things up. I tried metamucil which gave me some gas, so I’d recommend experimenting with the different brands since they have different sources of fiber. Also if you can tolerate it, try eating more nuts/oats/applesauce/beans (add this in slowly though).

When I was first finishing up my antibiotics after C Diff, I was bombarding my system with probiotics to try and fill it with good bacteria. I did this for weeks, taking lots of pills, drinking keifr, eating yoghurt. I had a constant bloated feeling and just felt uncomfortable all the time. Now I eat one yoghurt and take one florastor pill, and I notice my stomach is a lot calmer throughout the day now than it used to be.

I still have problems, but they are slowly getting better with time, and I know that it just takes patience!

beth22
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Re: Post 2nd FMT

Postby beth22 » Wed Apr 24, 2019 1:22 am

There are two products that some posters have used and say that helped them. The first you can get at any drugstore called IBGard. It is specifically for IBS - pepperming oil I believe. The other requires a prescription and is expensive, but the company has a foundation pharmacy where you can get it much cheaper. It is a medical food called EnteraGam and is supposed to help the gut immune system. I have taken some myself. It is a powder that you mix with water. It is also for IBS-D.

CDnotME
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Re: Post 2nd FMT

Postby CDnotME » Wed Apr 24, 2019 1:59 pm

Thanks guys! I was told to not take any probiotics as the “artificial” probiotics would fight with the natural gut flora that was replaced by the FMT. I was also told to avoid Peppermint as it’s considered a natural antibiotic and may kill off some of the good bacteria from FMT. I was pretty much told to eat bland and add fiber very very slowly. It’s hard to eat yogurt as I’ve developed a locators intolerance since having CDiff. I’m going to try and add oatmeal, but nuts and leafy greens or any veggie really sends me straight to the restroom. Been living on rice, toast, chicken, applesauce, potatoes, etc. not very healthy which is a concern to me but...what can I do until my stomach gets back to “normal”. I’d love a good salad, but if i ate that I’d better go ahead and take a couple days off work! I’ve taken Enteragam before aong side of the last round of antibiotics that failed. :/ hoping my bland diet will help things progress faster. Anyone heard of L Hlutamine helping? I’m nervous to try it because of the high sugar content and sugar feeding bacteria. But i heard it really helps the lining of the colon and small intestine heal???

beth22
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Re: Post 2nd FMT

Postby beth22 » Thu Apr 25, 2019 1:29 am

I have read that L glutamine in moderation was okay, but it had some kind of effects that were not good. I thought of trying it myself years ago, but decided against it when I researched it. I would ask the doctor before you take it or do some research yourself about side effects.

Zapper
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Re: Post 2nd FMT

Postby Zapper » Wed May 29, 2019 12:37 pm

So glad all is well. My first year post cdiff was ROUGH. A food journal was the best thing for me. Add a new food every 2-3 days and track the reaction. After 6 months I had a good list of foods I was OK with and slowly expanded from there with little flare ups. The IBS is a pain- post infectious IBS seems to be its own crazy thing.
I remember being 4-6 months after the 2nd FMT and just spirit was broken from all the bouts of D and IBS problems. I just wanted to jump in and make sure you know that some if us have longer recoveries but end up close to back to normal!
I can go out, drink (only a few), and live life like I used to with only a few small changes. But it took 1.5 years to get there. Hang in there! We are all here for you.


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