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wendyw
@wendyw

Posts: 48
Joined: Nov 05, 2017

Fecal Matter/Microbiota Transplant FMT

Posted by @wendyw, Tue, Apr 3 6:59pm

I have been researching this procedure and the success occurring with C Diff and now some success with curing ulcerative colitis.
My 43 year old son has severe recurring kidney stones ( lithrotripsy every 8-10 weeks) and he had medullary sponge kidney and ulcerative colitis, both of which can cause kidney stones.
Our hope is that if the FMT cured his ulcerative colitis, and IF that was the cause of his kidney stones he may be cured. Does anyone have any experience please?

REPLY

Hi @wendyw,

Thank you for reaching out to the Connect community with such an insightful observation!
Although research regarding FMT is still ongoing, there are a number of published studies which explore the role of gut bacteria in stone pathophysiology. Here are a few you may wish to read:

– Microbial Community Transplant Results in Increased and Long-Term Oxalate Degradation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5155304/

– Manipulating the gut microbiota to maintain health and treat disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315778/
"Oxalobacter formigenes is the key bacterium responsible for the degradation of oxalate in humans, and an accumulation of oxalate is the main case of kidney stone formation. Patients suffering from calcium oxalate kidney stones are less likely to be colonized by O. formigenes. The bacterium is sensitive to many commonly used antibiotics and is less abundant in individuals who have undergone antibiotic treatment at some point in their life. Oral recolonisation with Oxalobacter has been successful (52), although it is not permanent. Identification of specific substrates to boost existing numbers of O. formigenes would be a viable alternative therapy, but the preliminary microbiology work has yet to be done."

I was also wondering if you were aware of Mayo Clinic's comprehensive, multidisciplinary kidney stone program? Here's more information: http://www.mayo.edu/research/departments-divisions/department-urology/kidney-stones

I'm tagging @concernedmtnmom as she has discussed FMT, and may have more information.

@kanaazpereira

Hi @wendyw,

Thank you for reaching out to the Connect community with such an insightful observation!
Although research regarding FMT is still ongoing, there are a number of published studies which explore the role of gut bacteria in stone pathophysiology. Here are a few you may wish to read:

– Microbial Community Transplant Results in Increased and Long-Term Oxalate Degradation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5155304/

– Manipulating the gut microbiota to maintain health and treat disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315778/
"Oxalobacter formigenes is the key bacterium responsible for the degradation of oxalate in humans, and an accumulation of oxalate is the main case of kidney stone formation. Patients suffering from calcium oxalate kidney stones are less likely to be colonized by O. formigenes. The bacterium is sensitive to many commonly used antibiotics and is less abundant in individuals who have undergone antibiotic treatment at some point in their life. Oral recolonisation with Oxalobacter has been successful (52), although it is not permanent. Identification of specific substrates to boost existing numbers of O. formigenes would be a viable alternative therapy, but the preliminary microbiology work has yet to be done."

I was also wondering if you were aware of Mayo Clinic's comprehensive, multidisciplinary kidney stone program? Here's more information: http://www.mayo.edu/research/departments-divisions/department-urology/kidney-stones

I'm tagging @concernedmtnmom as she has discussed FMT, and may have more information.

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Thank you so much for your valuable information. Since finding about the effects of FMT on patients with C diff (99% cure ) and the ongoing research with other conditions I have been seeking more information on the procedure in Australia where we live.My son also have severe anxiety and I was very interested to find that serotonin is 95% produced in the gut. I wonder how an imbalance in the gut could affect both kidney stone production and anxiety?At present his kidney stones are forming more rapidly than they can be removed so the constant procedures and pain are debilitating.I will follow this up with the overseas patient dept at Mayo. If any other members can help with information I’d be very grateful.

Hi @wendyw,

I'm tagging other members who have had experience with kidney stones to share here: @kimh @trishanna @ella2000 @rosemarya @charlena @jkellyjones @mklapperich. I also recall that @2011panc had mentioned keeping a list of foods with their oxalate levels, and may have some thoughts as well.

Have you seen these discussions:
– Low Oxalate low Sodium diet https://connect.mayoclinic.org/discussion/low-oxalate-low-sodium-diet/
– Kidney stones https://connect.mayoclinic.org/discussion/kidney-stones-1/

@wendyw I am so sorry for you and your son's conditions. I learned something new from you; that poor gut health causes a reduction of serotonin. It does not surprise me that serotonin is produced in the gut, even though it is used in the brain. It also is no surprise that he may be low on serotonin based on the gut/colon problems he is experiencing. His anxiety, in my opinion is directly related to his long-terms and highly invasive treatments. I would not be surprised if he were also placed on an antidepressant. I have no experience with any of his diagnosis, but do have Stage 3 Kidney Disease secondary to long-term uncontrollable diabetes and a pancreas transplant. After testing at Mayo we discovered that my kidney disease is caused, in part, by Oxalates. I was changed to calcium citrate rather than oyster shell calcium because the oyster shells enhance oxalate formation. I also began a low oxalate diet, which I received from Mayo. There have been significant improvements to Mayo's oxalate diet since the first one I received. It just gets better and better, now not only listing better to worst foods, but also the amount of oxalates in the foods listed. This worked so well for me that I was removed from the kidney transplant list and I have been able to steadily improve my kidney function and keep it stable for 3 years; even though I am still very near the line of being returned to the transplant list.

I am praying for peace, understanding and healing for you and your son; as well as inspiration for your physicians to treat your son to a good resolution.

Just i case you or your son feel resistance to using "mental" prescriptions (as many do), please remember that medications are only prescribed when needed and will not be continued if his physical healing resolves his anxiety and possible depression and they become unnecessary. Chronic illness is very debilitating to both your physical self and your mental and emotional health. Blessings to you and your son.

Thank you @kanaazpereira for the link.

Thank you for your reply. From what I understand the serotonin produced in the gut is used throughout the body, but not the brain. The brain produces 5% which it uses. But who knows if you body is not a healthy place for serotonin if that affects your brain as well? Yes he is on antidepressants and accepts he needs them. I have found ( I think) that people with UC are lacking whatever it is that stops oxylate from causing problems. So I hope that curing the UC could fix this problem. Fingers crossed. I’m trying to find as much information as I can and have also got my son to go on the international patient list at Mayo.
Did you have kidney stones? It sounds like you have had a really tough time, and thank you for still finding kindness towards others, I wish you all the best

@kanaazpereira

Hi @wendyw,

I'm tagging other members who have had experience with kidney stones to share here: @kimh @trishanna @ella2000 @rosemarya @charlena @jkellyjones @mklapperich. I also recall that @2011panc had mentioned keeping a list of foods with their oxalate levels, and may have some thoughts as well.

Have you seen these discussions:
– Low Oxalate low Sodium diet https://connect.mayoclinic.org/discussion/low-oxalate-low-sodium-diet/
– Kidney stones https://connect.mayoclinic.org/discussion/kidney-stones-1/

Jump to this post

@wendyw, My only experience with kidney stones is that a tiny one was observed on a CT scan. My only treatment right now is to drink lots of water. The kidney stone specialist suggested that in my case, no treatment is needed now. My kidney transplant team will keep an eye on it.
I am sorry that I don't have anything to share about your particular situation.
Rosemary

@kanaazpereira

Hi @wendyw,

I'm tagging other members who have had experience with kidney stones to share here: @kimh @trishanna @ella2000 @rosemarya @charlena @jkellyjones @mklapperich. I also recall that @2011panc had mentioned keeping a list of foods with their oxalate levels, and may have some thoughts as well.

Have you seen these discussions:
– Low Oxalate low Sodium diet https://connect.mayoclinic.org/discussion/low-oxalate-low-sodium-diet/
– Kidney stones https://connect.mayoclinic.org/discussion/kidney-stones-1/

Jump to this post

I’m glad to hear that, you have enough to contend with already

@kanaazpereira

Hi @wendyw,

I'm tagging other members who have had experience with kidney stones to share here: @kimh @trishanna @ella2000 @rosemarya @charlena @jkellyjones @mklapperich. I also recall that @2011panc had mentioned keeping a list of foods with their oxalate levels, and may have some thoughts as well.

Have you seen these discussions:
– Low Oxalate low Sodium diet https://connect.mayoclinic.org/discussion/low-oxalate-low-sodium-diet/
– Kidney stones https://connect.mayoclinic.org/discussion/kidney-stones-1/

Jump to this post

I have not had kidney stones…

@kanaazpereira

Hi @wendyw,

I'm tagging other members who have had experience with kidney stones to share here: @kimh @trishanna @ella2000 @rosemarya @charlena @jkellyjones @mklapperich. I also recall that @2011panc had mentioned keeping a list of foods with their oxalate levels, and may have some thoughts as well.

Have you seen these discussions:
– Low Oxalate low Sodium diet https://connect.mayoclinic.org/discussion/low-oxalate-low-sodium-diet/
– Kidney stones https://connect.mayoclinic.org/discussion/kidney-stones-1/

Jump to this post

My only experience with kidney stone was minor and the stone was zapped by laser. Did have stones in my saliva gland, but that experience also would not be of help. Very interested in yourdiscussion of FMT and the role it's playing
Wish you well and I will continue to monitor.

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