help understanding my PI-IBS

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MKW
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Joined: Mon Sep 26, 2016 9:49 am

help understanding my PI-IBS

Postby MKW » Wed Jan 17, 2018 10:13 pm

Hi, I am hoping others here who have suffered with PI-IBS following C Diff treatment might be able to give me some input to understand my condition better. No matter how much I research, I do not understand what has happened to me.
I had a successful FMT in March 2017. I was basically fine and could eat whatever I wanted for two months. I had one day I had a problem due to green peppers. That was it.
Thereafter at about 8 weeks post FMT, I started with IBS symptoms and food intolerances. I was prescribed Levsin and tried to avoid possible problem foods for 4 more months.
I experience incidences of alternating D and C, bloating, excessive gas, and regular painful cramping in my sides and lower abdomen. It is debilitating at times, and many days I barely get through work.
At 6 months post procedure I started have panic attack symptoms, and what I call bad butterflies all the time, like feelings of dread in my abdomen.
I had made it through C Diff 4 times, an FMT, coped 6 months post FMT, ...why was I suddenly starting with all of these abdominal nervous stomach symptoms when I was fine? So I went on a low dosage of Klonopin. It helped with my IBS symptoms some and anxiety a lot, and I continue to take it.
In November I tried Amitryptilline but couldn't tolerate it. It made me too altered and wired. I couldn't eat or sleep. I can't take SSRI's either. I have an unusual response to antidepressants. Amitryptilline makes most people sleepy.
I take Levsin occassionally for pain, but hate how it makes me feel. It's action is short lived, then I seem to have more of a problem when it wears off. I take Immodium when I have D, if I have concluded I am not showing signs of C Diff.
Over the last two months I have increasing food intolerances and lost several pounds. I have been sticking to a low FODMAP diet which helps. It is definitely carbohydrates that are my problem. I seem to have no problem with any meats or dairy.
I just had a bunch of blood and stool tests done - all negative. No pathogens, no pancreatic enzyme problems, no signs of IBD in blood or stool, no hyperthyroidism, and my extensive metabolic panel was all normal. C Diff negative too :-)
So, my question to anyone who reads this is - WHY AM I GETTING WORSE? why is my IBS worsening over time with increasing food intolerability, weight loss, incidence of D, ...instead of better.
I had scheduled with an Integrative / Functional Medicine specialist to try for alternative treatments, waited 6 weeks, and my appointment just got canceled a few days ago because the doctor is moving. I have found another one, and have put a call in, but it will likely be a long time before I can see him.
If anyone has any ideas for me, please, please, please let me know what you think! Thank you - Melanie

justme
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Re: help understanding my PI-IBS

Postby justme » Thu Jan 18, 2018 12:06 am

Melanie:
I can definitely relate to your issues with PI-IBS. I struggle with it also. I had C. Diff 5 years ago and did not relapse. However, the remnants of the disease still seems to plague my body. I've become quite sensitive to a variety of food that never bothered me before C. Diff. Now, the 3 "S"s are primarily the cause of my IBS - sweets, salads, and spices. Anything within those categories give me an IBS reaction. I do consume them from time to time even knowing I'll have a reaction (except for spicy food - that I avoid completely). I take Bentyl and 1/4 -1/2 of a Xanax whenever the IBS hits. It works for me and my GI doctor agrees that it is a good combination to use. I am trying to get my body back to normal by introducing different types of food into my diet. Sometimes, it turns out well, sometimes it does not. I am fortunate not to have had the problems you have had (no recurrence of C.Diff and no D or C). It has also been a much longer time since my encounter with C. Diff. I have about 3-4 reactions daily, sometimes without knowing what it was that caused the reaction, but usually I can pin it down to a known culprit (like a salad I ate, that piece of red velvet cake, etc.). I would suggest that you very slowly add trigger food back into your diet and wait it out. It hasn't been that long since your encounter with C. Diff and sometimes it can take years for the body to normalize. If you know the trigger foods, avoid them at all costs. I've come to the realization that I may never be able to eat like I did before C. Diff and enjoy certain types of food. Unfortunately, an encounter with C. Diff. can change your life, but don't let it ruin it.
Aloha,
Anne

MKW
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Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: help understanding my PI-IBS

Postby MKW » Thu Jan 18, 2018 7:37 pm

Thank you for your story Anne! I get so frustrated sometimes. I want for there to be a way to get better and a way to improve. I wish we all had more answers to what we go through with this! My whole life I have healed myself and kept myself strong with healthy foods. My body can’t digest those foods properly now, so I feel lost.

NanciT
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Re: help understanding my PI-IBS

Postby NanciT » Thu Jan 18, 2018 8:12 pm

I understand and it is really different for everyone who gets this illness. Some go right back to eating and don't have IBS but there are also many of us left with IBS as well as other health issues we did not have before. It can take a toll on the mind and body.
It can also take a long time, I often don't tell anyone I am 3 years out still watching what I eat. But if I don't, the IBS comes back. I feel nearly 90% but with IBS I did not have before all of this. I think all the medications are hard on the gut. That is my own personal belief and my experience. I went very slow adding foods and now can eat salad( this I missed the most!) which is thrilling with no issues. I still cannot eat any red meat. I have carefully tried on 4 different occasions...not good. I will try again the future.
I wish I had some magic advice on this, it can just take time.

NanciT

roy
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Re: help understanding my PI-IBS

Postby roy » Thu Jan 18, 2018 8:23 pm

My theory.
We acquire around half of our gut flora species during birth, then it takes 2 years to pick up the rest and for it to mature.
During those 2 years a child's BM can at times be poop from hell!
Remember the crying with colic and the diapers that leaked up to the armpits?
A baby crawls around the floor and everything goes in it's mouth and the bug cocktail becomes a big part of it's immune system.
When we take antibiotics to cure c.diff we probably eliminate at least half of our gut bacteria so it seems reasonable that it can take at least 2 years to return, although in our super clean world where us modern adults reside there's not so much contamination so it might take even longer!

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: help understanding my PI-IBS

Postby MKW » Thu Jan 18, 2018 9:52 pm

Thanks for the input! I appreciate it.
Roy, I regularly wonder if I have adult colic of sorts. That my ups and downs are my microbiome evolving.
My second child who was a c section and not exposed to my bacteria therefore during birth, went through months of colic as a baby.
I would like to believe this will just take time.

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: help understanding my PI-IBS

Postby MKW » Fri Jan 19, 2018 11:19 am

Maybe I need to look at this like I shouldn’t eat anything I wouldn’t feed a two year old :-) and keep my dietary expectation level at that.

roy
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Re: help understanding my PI-IBS

Postby roy » Fri Jan 19, 2018 11:29 am

I have actually said that in some older posts.
if you would not feed it to a 2 year old it will probably upset a fragile adult gut.


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