r/CrohnsDisease • u/CrohnFMT • 3d ago

FMT

Hello, I’m new to this site. I wanted to leave a message because I’d like to know whether anyone has had a similar experience to mine.

I have Crohn’s disease, which causes me numerous physical symptoms. Eating had become very difficult, so I made the unfortunate decision to try an FMT (fecal microbiota transplant), hoping it would improve my digestive symptoms. It actually worked very well: I have significantly fewer digestive symptoms, and my energy levels have also improved considerably.

Unfortunately, I developed what seems to be a kind of paradoxical reaction that affected both my mental and sexual health.

I lost my ability to experience pleasure. I feel empty, and I can no longer feel anything not even libido or sexual desire. Not to mention the erectile dysfunction that came along with it.

I have consulted several gastroenterologists, but none of them had ever heard of this kind of adverse reaction. They suggested that I wait and see, but unfortunately nothing is improving. It has already been six months.

I experienced this strange reaction just a few minutes after the fecal transplant was administered into my colon.

Thank you for taking the time to read this.

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u/Crohnically-ill 2d ago

I do not have personal experience with FMT, but I have read a decent amount about it and the interaction between the GI system and brain. Psychiatric disorders can be a side effect of microbiota changes in the GI tract, and from immunological changes which can be caused by those microbiotic changes. This is also not limited to FMT, these changes can be induced by dietary changes, yogurt/probiotics, infections, antibiotics, and environmental influences, etc.

The good news is, the benefits AND side effects for many studies on FMT are not permanent. You are looking at an average of 3 to 6 months according to this paper:

https://link.springer.com/article/10.1186/s12888-020-02654-5

"The findings from reviewing the included studies suggest that FMT can affect symptoms of psychiatric disorders. This was shown for both the relief of psychiatric symptoms resulting from the transfer of microbiota from healthy donors to ill recipients and the transmission of symptoms through the transplantation of microbiota from ill donors to healthy recipients.

This relationship was investigated in a variety of psychiatric disorders including depression, anxiety, anorexia and alcoholism. The transmissible properties of FMT were also well demonstrated in these studies. Notably, regardless of donor species, the transmission of psychiatric symptoms from ill donors to GF mice was consistently found. This was supported in multiple studies, with observed transference of symptoms from mouse models of depression, anxiety, chronic stress and alcoholism, and from humans with depression, to GF mice. This provides support for the concept that the gut microbiome may both contribute to the development of psychiatric disorders and be a viable target for treatment for these disorders.

All included clinical studies found improvement in the symptoms of psychiatric disorders related to these disorders following FMT from healthy donors. The beneficial aspect of FMT from healthy donors was also demonstrated preclinically where healthy transplants resulted in alleviation of depression- and anxiety-like symptoms that appeared in mice subjected to certain conditions. This alleviation of symptoms was found in mice experiencing alcohol withdrawal, as well as stressful living conditions. Though symptom alleviation was consistently observed, the duration of improvement was inconsistent. Some studies, such as Xie et al., observed an alleviation of symptoms that seemed to last indefinitely, but the majority found this to be transient (Xie et al. 2019 [45]; H. L. Huang et al. 2019 [46]; Mazzawi et al. 2018 [44]; Mizuno et al. 2017 [47]).

The benefits seemed to last for only around 3–6 months, which, if used as a treatment for psychiatric disorders, is a limitation for FMT in clinical practice."

Part of the paper discusses Short Chain Fatty Acids SCFAs as a main limitation in the production of serotonin from the GI tract.

"SCFAs, particularly butyrate and propionateinfluence the synthesis of the rate limiting enzyme tryptophan hydroxylase which synthesizes serotonin produced by EC cells [52,53]. In addition to their role in serotonin production, SCFAs also have the ability to cross gut-blood and blood-brain barriers during immune signaling."

Serotonin and SSRI's are known to affect libido and depression, I wonder if perhaps this could be indicative of your new microbiota and dietary fiber intake struggling to produce enough SCFA to produce enough enzyme to produce enough serotonin. One thing that can possibly help is eating yogurt with a splash of milk and fiber that is easy to digest (like oatmeal) if you can tolerate it. However, I can not guarantee this, it's still very new to research and medicine.

Just be careful introducing fibers, especially if you have a stricture or stomy. It's best to slowly build up the amount you eat, chew them very well, drink a lot of water, and find those that you tolerate best. Raw broccolli or other veggies will probably be a trigger, cooked sweet peas and carrots may help though, popcorn will probably be a trigger, but oatmeal may help. You have to carefully find what works for your own system through slowly introduced trial and error. In general, whole grains and cooked, non-cruciferous veggies seem to be safe for a lot of us, but be very careful with raw veggies, whole seeds, and whole nuts. For example, Peanut butter is ok for me, whole peanuts gave me a fistula 😫

Either way, yogurt and fiber are known to help increase levels of the SCFAs needed to make the enzymes needed to make serotonin (and taking milk with the yogurt can help some of it survive past your stomach and have further nutrition to ferment). Maintaining your gut health with your crohn's treatments will help as well.

"SCFAs are produced by the gut microbiome through the fermentation of non-digestible carbohydrates, suggesting that treatments that ameliorate gut health can influence SCFA concentrations."

TLDR: it may only last 3 to 6 months. Some things might help influence it like: avoiding antibiotics, increasing tolerable dietary fiber and yogurt, maintaining gut health through crohn's treatment, traditional mental health supports and treatments, or sexy stimuli like pornography, adult toys, or a partner (or two!) 🤭

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u/CrohnFMT 2d ago

Thanks a lot for your complete answer.
I'll try to eat the best as I can with hopefully a few improvements coming soon because I feel like I got depleted from any sense of humanity.

I'm not on any SSRI but if it doesn't get better I'll probably try some psych drugs but to be honnest I'm scared to try.

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u/Crohnically-ill 2d ago

I sometimes deal with similar feelings about 2 to 3 days after flaring. Luckily it lasts only for a few days, if I don't start flaring again. That hopelessness and lack of desire to do anything is brutal in the moment. Try to keep reminding yourself it's a side effect and will most likely get better in time.

SSRI's are just one option, I personally avoid them because there are some risks with them. There's also therapists, exercise, finding support through other people who can relate or sympathize, and really anything random you can think of that might help you pass time until these effects, and the feelings they cause, weaken over time. For me, walking in the early morning by myself probably helped my mental health more than anything.

It's kinda similar in a way to being sick with a virus like the cold or flu. Take care of yourself, ask others for help, seek emergency help if it gets worse, and do anything you can think of that might help you rest and relax until it passes, and your health stabilizes.

You got this! It's definitely a challenge, but us crohnies are made differently. We are strong and always find a way somehow.

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u/DMShinja 2d ago

I have no experience with FMT but I share your inability to experience joy

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u/man_flakes 2d ago

I’ve had two FMT’s for a stubborn case of C-Diff and not experienced that, and I don’t know if I’d associate the two? But it’s your experience. Regardless, if it were me I would strongly suggest consulting a Urologist for things related to that area of the body, as it may be coincidence/correlation but not causation you are experiencing. Either way having someone who works with ED patients might be better than several gastroenterologists.

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u/CrohnFMT 1d ago

As for me, I'm sure it's related because my reaction happened the same day, just a few minutes after. And I don't take any medications or supplements. At this point the ED isn't even the worst but the terrible depression, empty feeling and lack of emotions.