8 days following FMT, just ready to feel better

Since c-diff is a disease of the "lower half", so to speak, we find that many of our members cannot refrain from discussing what comes out the bottom end. If you must do it, please do it here.
MrsM25
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8 days following FMT, just ready to feel better

Postby MrsM25 » Sat Jan 13, 2018 8:14 pm

Hello, 8th day coming to an end after my FMT last Friday. Fevers have been gone for 2 days now which is a relief. Flu like symptoms have definitely subsided although I am still feeling off and a bit drained. Things were going in the right direction with my bowel movements but today has just been a drag. If it’s not one thing, it’s another. Woke up with some gas pains and had a mushy bowel movement. It’s been just a recurring thing all day today. I’ll be ok for a little while and then gas pain and a small bowel movement, nothing completely formed. Some mushy, some try to be formed, one was just some mucus. I’ve probably gone at least 8-10 times today but all are small amounts and I feel like I could keep going sometimes but nothing else comes out. Sorry for TMI, I just can’t figure out what is normal anymore. I daydream of the good old days before c diff. I was a gym rat and an active and fun mom for my kids. Now I just feel miserable all the time and like a hermit. Sometimes I could just sit and cry but it doesn’t fix anything.

Is it normal to go so many times in one day after FMT? Including the cramping and the mucus?

roy
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Re: 8 days following FMT, just ready to feel better

Postby roy » Sat Jan 13, 2018 9:01 pm

I have moved this to the TMI forum, (we prefer not to have daily poop reports).
All sounds normal.

MKW
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Re: 8 days following FMT, just ready to feel better

Postby MKW » Sat Jan 13, 2018 9:39 pm

Hi, I can tell you since I've been reading posts on here since August of 2016, I have seen people experience a crazy spectrum of GI symptoms following FMT. I would say what you are describing could just be IBS, but I would report to your doctor what you are experiencing. This is very TMI, but for me, the "mushy" stool experience was something I never had before C Diff. I either had formed stools, or D. To this day, 10 months post FMT I randomly have unformed mushy BM's. I can tell you nothing about my BM's, even intestinal sounds and sensations, is like before my FMT, still now. Nothing is "normal" to me, I feel like I have a stranger's intestines. Before my last recurrence I had gone about a month off vanco and my BM's were just like they had been for the last 20 years. So, it was the FMT that changed everything. I am thankful my FMT worked, and feel blessed for that. But, it has not been perfect for sure. I also have food intolerances post FMT that I never had before. I believe people just have a variety of reactions to the donor stool, and the donor bacteria may keep C Diff in check, but it is not natural to your physiology. Also, I want to tell you I have seen posters have lots of D post FMT and their FMT work, and others with minimal problems relapse. So, don't be afraid it's an indicator of failure. Also, drugs like Levsin or Bentyl can really help if you are having spasming and cramping. If your doctor thinks it's just IBS like symptoms, you could inquire about an antispasmodic, it might help some.

MrsM25
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Re: 8 days following FMT, just ready to feel better

Postby MrsM25 » Sat Jan 13, 2018 11:50 pm

I just feel like I keep going and going today, it’s progressively getting worse and the abdominal pain just stays now. I’m not sure if I should call the on call or wait it out a little longer. I’m sitting with my heating pad on my stomach.

beth22
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Re: 8 days following FMT, just ready to feel better

Postby beth22 » Sun Jan 14, 2018 2:50 am

I would keep a food journal and write down what you eat. I got many, many food intolerances after my FMT, but I actually got them whenever I went off vanco. I don't think it was so much the FMT as the vanco in my case. I not only got IBS, but I got a very bad case of SIBO and wound up having to treat it with Xifaan. After that things got better. It might be that you had a virus all along and that is what gave you the fevers and flu like symptoms and perhaps this is a result of that. Try to eat fairly bland for a few days. I had many off days like that and others have described it too.

MrsM25
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Re: 8 days following FMT, just ready to feel better

Postby MrsM25 » Sun Jan 14, 2018 11:00 am

Well, I slept with my heating pad last night. I got up twice to go to the bathroom. My husband let me sleep until 9 and he got up with the kids. So far my stomach doesn’t hurt which is a miracle since it was non stop last night. I’m hoping it’s something I ate like you said or a bug. I still don’t have a fever or flu feeling like I would with relapse. It’s so weird because when I had the fevers and flu feelings, I wasn’t going to the bathroom much and now that the flu like feelings and fever are gone, I’m going to the bathroom like I would with relapse. But usually the combo of the 2 means relapse for me. I’ll try to eat super bland today. I’m scared to eat anything right now.

Bobbie
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Re: 8 days following FMT, just ready to feel better

Postby Bobbie » Mon Jan 15, 2018 2:01 pm

It took weeks before my FMT worked but it finally did. It is a miracle cure for some - - not for others. Give it more time. Know how stressful this is. Hang in there.

Heating pad has always been my "go to comfort."

MrsM25
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Re: 8 days following FMT, just ready to feel better

Postby MrsM25 » Mon Jan 15, 2018 7:24 pm

Thank you everyone. It’s been rough. After Saturday, I seemed to improve yesterday. I went all day without going to the bathroom after 2 trips first thing in the morning and then 1 at bedtime but nothing crazy. No abdominal pain or anything. I was good today most of the day as well until about an hour ago. Now it has hit me again, abdominal cramping, diarrhea, mucus. Going every 15-20 minutes. I called my on call doctor and they said I need to get retested again. It’s been 10 days since my FMT. I feel so defeated and I feel like I’m never going to feel normal again. I’ll be so devastated if it’s positive.

MKW
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Re: 8 days following FMT, just ready to feel better

Postby MKW » Mon Jan 15, 2018 9:13 pm

Hi, I just wanted to comment that if your retesting process through your doctor takes days, you may want to inquire if a local hospital lab can get results faster. If you’ve gotta test, better to just go ahead and know. I HATE the mental anguish of awaiting test results myself. Ibs can have very erratic and fairly severe symptoms. It’s really hard for people who experience this post treatment, because you just can’t relax and tell yourself you are ok. C Diff is the most stressful medical problem I have ever been through. I fell out of a swing once and fractured my sacrum. I hurt for months and couldn’t walk properly, couldn’t sit even, and had to go through Vicodin withdrawal in the end. That was like a walk in the park in comparison. So you are tough to have coped so far!

MrsM25
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Re: 8 days following FMT, just ready to feel better

Postby MrsM25 » Tue Jan 16, 2018 6:31 pm

Oh MKW, I swear, it is the toughest thing to deal with mentally! The abdominal pain and D/M subsided about 10PM last night. I had 2 loose BM’s this morning and then nothing since again. It’s been about 8 hours now. The GI office called and the on call doctor who is my GI’s father had said he wants me to do a stool retest but my GI said he wants me to wait longer because I could get a false positive and he would be forced to treat me in that case. This whole process is so stressful and it’s so confusing to know if it’s CDiff or PI-IBS. I keep saying to myself that it wouldn’t stop if it’s cdiff but maybe I’m wrong, I don’t know. I’ve been eating super bland today. I also started a food journal. I’m having a hard time knowing what to eat too. I know the basic things like toast, baked potatoes, I just don’t know what I can put on them like peanut butter or butter? Do I just eat plain potatoes or plain toast? I’m just so unsure of everything. I also got some peppermint tea today to try. What about adding benefiber? Will that give me worse IBS symptoms or will it improve them? So confused and so hungry, lol

roy
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Re: 8 days following FMT, just ready to feel better

Postby roy » Tue Jan 16, 2018 7:52 pm

Sounds like your on the way to a perfect recovery!
Listen to your Dr and avoid testing unless copious watery D returns several times a day.
Your recovering well so don't change or add anything for a few weeks, if its not broke don't try to fix it!
So far everything your describing is normal recovery but if you keep on calling the Dr they will test just to pacify you!
A "false" positive is likely and as your Dr said they would be obliged to treat and that will undo any benefit of the FMT.

Try and keep to one thread, it's difficult keeping track if you keep starting new ones.

MrsM25
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Re: 8 days following FMT, just ready to feel better

Postby MrsM25 » Tue Jan 16, 2018 9:44 pm

Thanks Roy. I’m trying to keep things in perspective but when you get those symptoms, you think this is it, I’m relapsing. It’s mind games. I do take your advice seriously though. I keep repeating to myself, 3 day rule, 3 day rule when I feel myself panicking. I will continue to hold off on testing unless something more terrible happens. The GI office is mailing me a stool study script but my GI says to wait it out longer. Today was my first full day with my food journal. Again today, I was fine. I will see how I am tomorrow since the pattern has been every other day with the symptoms but I tried to eat very bland today.

Sorry about the double post. Will do

beth22
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Re: 8 days following FMT, just ready to feel better

Postby beth22 » Wed Jan 17, 2018 2:47 am

I had a lot of trouble with fruit (couldn't eat at all), vegetables and dairy. Even butter bothered me at first. Try eating rice, potatoes as you have done, baked chicken breast or turkey. Some people can tolerate bananas - I couldn't. Add new foods gradually and one new thing at a time because otherwise if you have a problem, you won't know what food caused it. I ate Rice Krispies wtih rice milk for breakfast. Benefiber helps some people and not others. For me any fiber just made things worse, but for others it helps. If you try it, try just a small amount and see what happens. Good luck and keep us posted. Hopefully, you will improve as time goes on.

roy
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Re: 8 days following FMT, just ready to feel better

Postby roy » Wed Jan 17, 2018 6:38 am

when someone says a small amount it means ONE SPOONFULL. not a bowl full!

MrsM25
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Re: 8 days following FMT, just ready to feel better

Postby MrsM25 » Wed Jan 17, 2018 10:17 am

Maybe I’ll hold off on the benefiber for a few days and just continue with the super bland diet and see if I can get my BM’s to regulate a bit. Then I’ll get a little more daring again, haha. This diet stinks but hopefully it doesn’t last forever. My 30th birthday is on the 25th and my mom keeps asking me what I want for dinner that day but I literally cannot even think about that right now. People who haven’t been through this just don’t understand. My family is very supportive, believe me, but they just don’t quite know the daily struggles.


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