How bad is too bad?

If you have had or are considering an FMT please share your experiences here.
cdaleguy
Contributor
Posts: 67
Joined: Sun Jan 01, 2017 3:40 pm

How bad is too bad?

Postby cdaleguy » Tue Mar 07, 2017 11:11 pm

Friday I will be three weeks post-FMT. I was still c diff negative on Friday.

I guess I don't understand how bad I'm supposed to feel. I am back to having all D every day. Everything about it is the same or worse as with active c diff. I have now started to have upper GI issues like reflux and stomach bloating. I went to the ER because I thought I was having a cardiac event but it was reflux or spasms making me unable to get a good breath.

My GI is a personal friend but I'm frustrated with him telling me this just may be my new normal. How can that be? He is still wanting to do a flexible sig with one bottle of magnesium citrate and a fleet enema but I don't think I should do it. It's causing frustration on my part and his because he says it's no worry and I say, yes, the studies show that it can wipe out my good flora.

I took the Librax for four days before my wife and I agreed I needed to stop it. Cognitive issues and sedation were way too much for safety right now. Bentyl didn't give me any trouble but didn't seem to help. I haven't asked about questran yet because I've not had a chance and I'm a bit scared of the malabsorbtion issues I've read about.

I know many of you have struggled for far longer. I guess I just still haven't accepted this bring my life going forward. I was a young, healthy dad until c diff. I'm feeling like giving up. I won't. But I feel like it. I feel like everyone thinks I should just get better and it's all in my head. My wife is due anytime now with our baby and she told me Friday she can't stand this anymore and that it's changed how she looks at me because I've cried and struggled so much. She said she doesn't blame me for the illness but that she needs care right now and I don't give it because I'm absorbed with how I feel crappy.

Thanks for letting me vent.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: How bad is too bad?

Postby georgina » Wed Mar 08, 2017 1:34 am

So sorry you are having such a hard time , you should really do that scope to see what is going on in there and also it might be a good idea to be check for other pathogens and SIBO as well. I know that you had a top-down infusion and that , unfortunately , can give you SIBO. Don't be afraid to take Questran , it's just a binding agent , snd stop worrying about Questran giving you malabsorbtion as it seems like you are already dealing with it.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: How bad is too bad?

Postby amyc » Wed Mar 08, 2017 4:35 am

I take colestipol tablets every evening, which are basically questran in tablet form, and have no malabsorption issue at all. My doctor started me at a higher dose twice a day but I was able to ween down to a smaller dose once a day pretty quickly.

I know your GI is a friend, but you may need to find another doctor. Have you seen the ID who did the FMT again? You really should be doing better by now.

Your wife is huge & pregnant & full of hormones, but I have to laugh about her saying she needs your attention. My husband was military when our kids were born, and, um, even though it's only been a little over 20 years since the youngest, it just wouldn't have crossed my mind to insist upon special care pre-childbirth. My mother and women from her generation would tell her off! That said, stop crying. Start fighting. Find another GI and another ID. If you have to travel to Mayo or Hopkins or a similar facility for treatment, do it! Tell your wife that you can't function like this, and certainly can't provide strength and security when you are so ill. But communicate that to her without crying.

I had two kids under 17 months of age, no family anywhere near, had just moved to a new state, and my husband deployed. I survived, the kids are happy, healthy, successful young adults. Your wife needs to support you too. But, again, stop crying.

Try Xanax and an antidepressant if you need it.

Roxanne
Regular User
Posts: 56
Joined: Tue Jan 24, 2017 12:10 am

Re: How bad is too bad?

Postby Roxanne » Wed Mar 08, 2017 8:30 pm

So sorry to hear everything your going through. There is hope, you just have to hang in there. I agree with what Georgina said. Get a complete test done, check for parasites and other issues. C-Diff can give you a false negative. I read three tests should be done. Great idea for the scope.

cdaleguy
Contributor
Posts: 67
Joined: Sun Jan 01, 2017 3:40 pm

Re: How bad is too bad?

Postby cdaleguy » Wed Mar 08, 2017 8:38 pm

I'm going ahead with the scope of both ends. I take your advice seriously. He's agreed to making me drink the one bottle of mag citrate and one fleet enema in the morning.

I've had no food since last night and, while I am definitely hungry, it has felt good not to have my stomach torn up.

I have had a full set of fecal tests for giardia, parasites, etc. I had a stool culture done for all kinds of things I'd never even heard of.

I'm really hoping for some answers. I'm wondering about celiac but I really hope not. I'm hopeful he says I'm not permanently damaged in any way.

Thank you guys for sharing your insight and letting me vent. My wife is doing much better now that I'm making more of an effort not to make every conversation about me and how I feel.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: How bad is too bad?

Postby georgina » Thu Mar 09, 2017 1:31 am

Agree with Amy , it seems like you really need to calm down , you are under to much stress and stress will only aggravate GI symptoms . Stop crying , get help from a psychiatrist or a therapist , do not put anymore pressure on your wifes shoulders , she is already going through a rough time , being pregnant is no fun , especially when you are at the point of giving birth. If I were so ill and my wife needed help and I couldn't do it, I would ask someone close from family to come and give us a hand.
Try to get checked for SIBO as well , you had a top-down infusion and those can put you at risk for SIBO.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: How bad is too bad?

Postby beth22 » Thu Mar 09, 2017 1:34 am

I got horrible food intolerances after c diff and my FMT. What kind of diet are you following? I could not tolerate fruit, vegetables, dairy (even butter). I had a lot of tests done too, including sigmoidoscopy, but what I had was SIBO. One of the worst cases the doctor had seen and he is an expert in SIBO. If they don't find anything, then maybe ask to be tested for that. It is a breath test. Good luck with the tests.

Tsc1964
Regular Contributor
Posts: 239
Joined: Tue Nov 29, 2016 1:18 am

Re: How bad is too bad?

Postby Tsc1964 » Thu Mar 09, 2017 12:27 pm

Dale,
So sorry to hear your struggling so much. It is very hard an frustrating for our loved ones to see us change so much with this illness. My husband us a fixer an its frustrating him so much. Ive never been so sick for so long in my life an weakness is unreal. Ive tried to be sure that when hes talking about work or whatever that i focus on him. Its hard because we are living this. I agree with other posters get help from friends an family. My kids are grown an they have pitched in to help. Not sure if you've had complete nutrients blood work up. I just did an very low on d an calcuim an i also started celexa last week. Needed something get my mind functioning better. I cant imagine having new baby coming an going thro this my prayers are with you. Also alot poeple around me have said so much as there has to me something else wrong an cant understand why i feel why i do. I been to rheumotoligist neurologist surgeon cardilogist my pcp numerous times an GI several er visits. My pcp told me yesterday my body been fighting this an the meds are strong . Makes sense logically but living it cant help wonder if theres something else.


Return to “FMT Discussion”



Who is online

Users browsing this forum: No registered users and 8 guests