12 days post colonoscopy FMT and having issues

If you have had or are considering an FMT please share your experiences here.
Roberta
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12 days post colonoscopy FMT and having issues

Postby Roberta » Mon Mar 28, 2016 6:49 am

Hi everyone,

I had my FMT via colonoscopy on the 16th and my GI Doctor told me to resume all normal activity. Regular diet, exercise, etc. He did say to hold off on probiotics to allow the donor stool to work naturally. The first two days I had a lot of gurgles, gas and loose stool which I assumed was normal. It passed by the third day and the only issue I had was bleeding and burning when using the washroom which I am fairly sure was a bleeding hemmoroid or little tear. No blood in my stool or toilet. I was ok for the days following (still not 100% of the way I felt prior to c diff but ok). Then day 10 I started to get pain in my lower colon area and rectum which seemed very similar to when I had c diff. It moved to my stomach and up under my ribs. Feels like constant stabbing gas and I'm very boated. Lots of gurgling and some heartburn. I was expecting to start passing M again which would have confirmed my assumption that the c diff is back but nothing so far so I'm remaining hopeful. I never suffered from the D that many have. Just pain, urgency to go and lots of M when I was active with c diff. Prior to my FMT I relapsed three times on several long doses of all the typical antibiotics to treat this. To my knowledge I did not develope IBS with the c diff but now not sure what's going on. I plan to call the doctor today.

My question here is I know FMTs have a high cure rate and those that are cured may not necessarily be reading or posting on the site any longer. I am certain I have read and re read every posting, success stories etc.

Is there anyone who has relapsed after a colonoscopy FMT without taking antibiotics ( as I have read several posts where relapse have occurred due to that).

I am getting anxious which I am trying to keep under wraps here but I really will not know what to do if the FMT did not work. What would be next? Do some people require a repeat and does the repeat work? The GI Doctor's assistant told me during her follow up call last week that if a FMT did not work I would be placed back on antibiotics and go that route again.

I do hope one day I can post under the Success Stories.

Lisa33
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Re: 12 days post colonoscopy FMT and having issues

Postby Lisa33 » Mon Mar 28, 2016 10:06 am

Hi Roberta - I am so sorry you are experiencing GI issues. I did not have an FMT, so cannot offer any personal experience. However, I just wanted to say that it seems like almost every poster on here that has an FMT has experienced GI issues after. It seems to be more common than not. I think we all think that FMT's are the miracle cure, and I have read that you can instantly feel better right after. But evidence on this site, does show otherwise. I can't even recall one poster who felt completely normal afterward. I feel like many do think they are relapsing because of the symptoms that they still feel. I can say that most do test negative, and that it seems that your colon, gut and body just need time to heal and to take to the new bacteria from the FMT. However, you should definitely see your doctor, and maybe you can retest?

I believe that there have been a few posters who have relapsed after one FMT, but were cured after having another. A recent poster, skizamii, had several FMT's, and he just posted some positive news that the last one that was top down and bottom up did the trick. He had a very long road, but he is proof that even the most resistant of c-diff is curable.

Try not to get too anxious as experiencing GI issues after an FMT seems to be the norm on this site. Talk to your doctor, and keep us posted.

Lisa

Roberta
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Re: 12 days post colonoscopy FMT and having issues

Postby Roberta » Mon Mar 28, 2016 9:40 pm

Hi Lisa,
Thank you so much for your encouraging words. My GI doctor is out of town this week, but I was able to speak with his nurse. She suggested to take Gas X which I took tonight and it helped with the pains in my chest and stomach. Suggested a BRAT diet until my stomach pains settle down. She said that some people have IBS symptoms following. More from c diff damage than the FMT. I told the nurse I didn't really have IBS with the cdiff and asked if it will pass. She said it most likely will but from reading the posts I see it can be a long road. The GI doctor did say before my procedure that if I didn't have IBS before the FMT, the FMT would not solely cause it. I just pray it's not the cdiff coming back. I am a bit constipated so will only have a better idea when I go if I see M again. The nurse said to call immediately if that happens. I went to the gym tonight and had a good workout and it helped also with the the stabbing gas pains. I see Bobbie has encouraged exercise as well and I think it's great advice.

Hopefully this will improve. This site and all of you who take the time and caring to help us along is a real lifeline.

Thank you again.

Maddy
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Re: 12 days post colonoscopy FMT and having issues

Postby Maddy » Mon Mar 28, 2016 9:57 pm

Hi Roberta,

Thank you for your posts. I had an FMT five days ago and am experiencing gas too, especially in the afternoons. So far, things have been fairly normal otherwise.

I have noticed a very strong odor though, has anyone else experienced that?

Roberta
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Re: 12 days post colonoscopy FMT and having issues

Postby Roberta » Mon Mar 28, 2016 11:24 pm

Hi Maddy, yes I noticed the bad odor too.

Maddy
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Joined: Fri Jan 22, 2016 3:34 pm

Re: 12 days post colonoscopy FMT and having issues

Postby Maddy » Mon Mar 28, 2016 11:28 pm

Thanks for replying Roberta. It helps to know that someone else has experienced this too.

NikaNik
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Re: 12 days post colonoscopy FMT and having issues

Postby NikaNik » Thu Mar 31, 2016 12:03 pm

Hi, Roberta,

I hope things settle down and you get to feeling better soon. It can take time for the gut to heal. I do want to point out that we've had several posters pass just M - and while sometimes it's part of c diff, for others it was a part of recovery and an IBS symptom.

Nikki

Bobbie
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Re: 12 days post colonoscopy FMT and having issues

Postby Bobbie » Fri Apr 01, 2016 12:14 am

Hi Roberta from another Roberta,

I had a FMT four years ago at a well-known facility with a well-known doc. I kept the infusion in for two days. However, it was not a miracle cure for me. I had pain and off and on diarrhea for weeks afterwards. Traveled to the UK for my older son's wedding. After three kids, I Was not going to miss it! Was miserable the entire time but got through it - one more way c diff has screwed up your life. The only time I felt decent was during the dance at the reception when I danced for three hours. Better than sitting and thinking about how lousy I felt.

My PCRs were all negative and I eventually felt better. My husband was my donor, and although he passed all the tests, I have always wondered if this was the reason. I had IBS after every bout of c diff and stil have it occasionally. Damned bug!!!

Hang in there. Same to you, Maddy. Give it some time.

Maddy
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Re: 12 days post colonoscopy FMT and having issues

Postby Maddy » Fri Apr 01, 2016 5:05 pm

Hi Roberta and Roberta ; )

I was given the ok to resume probiotics a few days ago (I was told to hold off on them for one week post FMT.) I resumed taking Florastor, culturelle, and drinking kefir and I feel much better. The diarrhea has resolved and the cramping is much less. I realize that correlation does not equal causation, but I believe that the probiotics helped my condition to improve. Perhaps you've already done this?

I wish you both excellent health.
Maddy

Roberta
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Re: 12 days post colonoscopy FMT and having issues

Postby Roberta » Fri Apr 08, 2016 6:04 am

Thank you everyone for sharing your experiences. This past Wednesday marked my 3rd week post my FMT. As you will see I had a few bumpy patches and perhaps it was recovery. I am improving considerably and don't want to jinx myself but I would say I'm pretty much back to normal. I seem to be able to eat anything without much issues. I had some moderate food intolerances prior to cdiff and I would say that's about the same now. I have a routine follow up appt with my GI Doctor this coming Monday and hope he will also tell me I'm out of the woods. I don't know how many weeks we need to be symptom free to say we are cured. In my mind I am targeting 4 weeks. When I relapsed all of the other times from antibiotics treatments it happened within 7-10 days. I'm at 21 days and no c diff signs.

I hope I will be able to post in the success stories soon. This has been the worst experience of my life. I do hope I am finally on the other side of it. This support network has carried we through this difficult journey. Thank you Bobbie (the other Roberta) for your support as well. Your story has been a tough one too!

Roberta

Lisa33
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Re: 12 days post colonoscopy FMT and having issues

Postby Lisa33 » Fri Apr 08, 2016 12:23 pm

I'm so glad things are going well for you, Roberta. Thank you so much for sharing your positive news. We need more positive news on this site! I wish you continued health.

Lisa

Maddy
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Re: 12 days post colonoscopy FMT and having issues

Postby Maddy » Fri Apr 15, 2016 10:12 pm

Great news Roberta. I wish you continued good health. I am 22 days post FMT and am having some IBS like symptoms, but they are somewhat mild. I am glad and encouraged by your success.

Best,
Maddy


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