5 months post FMT

If you have had or are considering an FMT please share your experiences here.
Spector
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5 months post FMT

Postby Spector » Sun Nov 06, 2016 11:00 pm

Hi all,
I posted here at the start of the year when I had an active c-diff infection - viewtopic.php?f=7&t=16548

I thought I would give an update and share my experiences as well as asking some questions. I ended up (after many more rounds of the same antibiotics…) getting referred to a public hospital which put me into a clinical study and gave me an FMT via colonoscopy – this was done in May. They have only done this to about half a dozen patients in Perth, Western Australia. My c-diff was cured fairly quickly; I tested negative 2 weeks after the FMT.

I followed up with the gastroenterologist at this hospital as I was still having a lot of issues – infrequent diarrhoea, cramping, pain, bloating, gas, mucous, sometimes blood, nausea. I ended up getting put on amitriptyline and they recommended I see a psychologist as I was still having severe sleep problems due to a lot of these symptoms.

5 months down the track, although I have certainly been cured of my c-dff, I have made no improvement in terms of general well being. All the symptoms above hinder my ability to have a normal life. I’ve been told this is just post infectious IBS and seen multiple other doctors at the same hospital who think it will just take time. I’ve managed to ween myself off the Nexium, currently taking 25mg of amitriptyline but no other treatment has been offered.

I have seen a dietician and been on a low FODMAP diet for about 3 months – I believe this has not really given much improvement. I’ve also barely been able to put on any weight.

The last doctor I saw at the hospital wants to make our appointments more infrequent (3 monthly) despite suggesting I may have SIBO. He said that it can only be treated with antibiotics and I would be too much at risking of getting c-diff again such that it would be the lesser of two evils…

I am at a bit of a loss as to what to do next. I am happy that I can actually leave the house as my chronic diarrhoea has been cured, however, I still have almost every other symptom and almost feel like I am getting worse. I have also tried various probiotics but none seem to agree with me, the doctors have also recommended not taking.

Does anyone have any advice? I’ve read a lot of the posts on this forum that are similar so thank you to all the other posters for sharing their experiences.

beth22
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Re: 5 months post FMT

Postby beth22 » Sun Nov 06, 2016 11:19 pm

I had terrible SIBO after c diff and FMT. I did have to treat with Xifaxan, but it did not bring the c difficile back. In fact, it is given as a chaser to vanco sometimes to treat c difficile. However, any antibiotic can potentially cause c difficile, so it is something to consider. There are other ways to treat SIBO too with diet. But, it seems you are already on a semi-diet. I would get a breath test for SIBO to see if that is what you have before you even consider treating it.

Spector
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Re: 5 months post FMT

Postby Spector » Sun Nov 06, 2016 11:35 pm

Hi Beth, thanks for your response. I think that my part of the world is a little bit behind the times when it comes to recognizing and properly treating all these issues. I am going to try to get a referral to another specialist to attempt to get the breath test for SIBO done but it didn't look like my previous doctors through the public system tested for it. Did you have any other things you did that tried to improve SIBO without antibiotics?

amyc
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Re: 5 months post FMT

Postby amyc » Sun Nov 06, 2016 11:45 pm

Look up mast cell disorders and post infectious ibs. You could ask for low dose Xanax to help with sleep issues. I couldn't take sleeping pills because they were way too strong for me but one small Xanax a night works great.

beth22
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Re: 5 months post FMT

Postby beth22 » Mon Nov 07, 2016 2:27 am

Unfortunately, some of the things that are helpful for c difficile make SIBO worse, like probiotics. I had to try various probiotics before I found one that did not give me GI symptoms (VSL#3) and I can only take a small amount - part of a capsule. You might try something that we have here called IBGard. You may not have it there by that name, but it is encapsulated peppermint oil capsules. Those help some. Some people do well by cutting out gluten. I did not have much problem with gluten, but could not tolerate dairy at all. Foods that had fiber, like fruits and vegetables were difficult for me. Meats, poultry, fish were fine as were rice, potatoes and pasta. It varies by individual.

You might want to keep a food diary for a few weeks and see what seems to provoke symptoms. It is different for different people. Xanax that Amy mentioned helps some people and some have taken antispasmodics like Bentyl or Levsin. Amytryptyline in a small dose has also helped some. You could try an antihistamine as Amy suggested, but ask your doctor first about any of these things.

georgina
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Re: 5 months post FMT

Postby georgina » Mon Nov 07, 2016 2:28 am

Amitripitile works great for sleep disorder , although sometimes the dosage needs to be raised. I have a really hard time with the insomnia as well ,but since I've been put on a low dose of Carbamazepine (for head aches) my insomnia got better although I still have days (rare) when I'm struggling to get asleep , I'm using one Zopiclone pill and it gets me asleep in less then 1 hour.
It seems like you are left with terrible IBS , you can also discuss with your doctor about trying some antispasmodics or Enteragam along with the Amitryptiline and see if there is any improvement.

Spector
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Re: 5 months post FMT

Postby Spector » Mon Nov 07, 2016 4:07 am

I've kept a plain diet, all the foods you suggested Beth. It's hard to get enough fiber into the diet though. I've tried psyllium husks and this seems to make things worse as well...

I've tried going up to a higher dosage of amitriptyline (50mg) but I am just too drowsy from it and it still doesn't help me sleep when symptoms are bad. I will investigate some of the other suggestions mentioned above - thank you all.

Spector
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Re: 5 months post FMT

Postby Spector » Sun Dec 04, 2016 9:48 pm

I've been asked to take a low dose of doxycycline (50mg) for suspected SIBO. Does anyone have any experience with this antibiotic?

A bit worried about taking it but I guess the risk is always going to be there and I am not really improving.

beth22
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Re: 5 months post FMT

Postby beth22 » Sun Dec 04, 2016 10:55 pm

I go to the doctor who figured out what SIBO was. Usually what is given is Xifaxan, not doxycycline. Do you have SIBO with constipation or D? I have taken doxycycline short term without a relapse, but it is always a possibility. It does not work against c difficile, whereas Xifaxan does for most strains.

georgina
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Re: 5 months post FMT

Postby georgina » Mon Dec 05, 2016 12:41 am

Don't know how Doxy would help with SIBO , can't answer that, but i tried Rifaximine 10 day per month for three month and everytime i was on that course of meds i felt a little improvement.

Spector
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Re: 5 months post FMT

Postby Spector » Mon Dec 05, 2016 3:50 am

I have SIBO with constipation mainly.

I am not sure why this was prescribed over those other antibiotics. Maybe this is a cheaper drug so they prescribe this one first? Or perhaps this doctor isn't aware of the other drugs? It seems to be hard to find a really good doctor that is up to date with these things over here... the previous doctors that treated my C Diff with FMT would not treat SIBO with antibiotics.

The doctor that has prescribed me this wants me to go on a long term low dosage

Cdiff
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Re: 5 months post FMT

Postby Cdiff » Wed Feb 22, 2017 5:01 pm

Hi Spector
I'm in Melbourne and 2 months post-FMT. I'm having the same symptoms and getting no response from the specialist who seems to think it's all good. Just wondering how you are going and what you have tried since your last posting.

Spector
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Re: 5 months post FMT

Postby Spector » Mon Feb 27, 2017 3:43 am

Hi Cdiff,

Sorry for the delayed response, I only check the forum semi-regularly.

I am still having quite a lot of issues. The course of antibiotics did not seem to do much and I tried them for about 6 weeks or so.

The specialist I am seeing found I have inflammation in my small bowel through blood tests (also found I have some other gene deficiency that makes me susceptible to infection!) and as such put me on a tapering dose of steroids for 2 months. On top of that I have been trying a probiotic (life space 100 billion probiotic), colese and pentasa. I tried Lyrica for pain relief / sleep but this made my issues worse. I would say that I am still very up and down and perhaps my less bad days are perhaps a little bit better than previously, however, overall it is hard to tell of any improvement. I am due to have blood tests in a couple of weeks and follow up with the specialist.

I am also having a small bowel MRI later next month (this does not look like a very nice procedure).

I've basically stopped seeing the other specialist who also thinks everything is "all good" as well.

I am starting to wonder if this is just going to be the "new normal" and something I have to get used to...

Cdiff
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Re: 5 months post FMT

Postby Cdiff » Thu Mar 09, 2017 1:26 am

Hi Spector,
so sorry that I haven't checked your post for a reply. I'd given up but I'm glad you found a specialist who has investigated further and identified the other problem. It is so hard to know what to expect with the post-infectious IBS. Like you I have been referred to a dietitian for a fodmap diet. Was told to take degas for bloating and movocol and bisalax daily for constipation. Also peppermint tea. I asked the specialist about SIBO but he didn't think I have it. I'll see him again in 3 months. Just having to adjust my expectations to a long slow recovery, up and down all the time.

I've also started seeing a naturopath who is a also a pharmacist. She gives me Repairase, a combination minerals and vitamins and antioxidants. She has also suggested Gastro AG a prebiotic, something called Rascally and Curcumin. I'm starting one at a time on very small doses. Will see how it goes.

Good luck with the MRI. Hope it goes well for you and sorry again for not catching up sooner.


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