Ulcerative Colitis - Support During The Remission?

[Asya_D]

Hello! I'm so excited to find this forum, and Georgi, thank you so much for all your amazing work.

I would like to share a little story about my husband and ask your recommendation.
My husband is an ex-marine, workaholic, studied at GAtech and worked 2 jobs and kept drinking coffee on empty stomach and eating junk food. Subsequently, he developed Ulcerative Colitis in 2011, and the doctors were able to put him into the remission with sulfasalazine and prednisone (PS. He only met me in 2013 after he graduated and I fed him right :)

Throughout the years he was on and off the flare, we saw from "Star GI doctors" to VA doctors, tried all sorts of medication: Humira, Remicade, Entyvio.. he always developed antibodies, and then just stopped responding to medications.

2 years ago my husband's GI doctor said he can no longer help him. He wasn't responding to any medication, and prednisone wasn't an option anymore. The doctor said: the surgery (colectomy) was the only way for him to start living a normal life.
My husband had a surgical consultation and was ready to set the date for the surgery.
After doing extensive reading on colon, microbiota, and the immune system to the best of my ability at that time - I asked him to hold off the surgery. I asked him to try every other alternative treatment option and only after failing them - go for the surgery.
I offered to try FMT (Fecal microbiota transplantation), but unfortunately (in this case), he didn't have C.Diff, so we couldn't do in the States, and we were too chicken to try it ourselves.

At that time, my husband's weight was about 120 pounds (5"10 height), he was running to the bathroom 20 times a day, bleeding, hurting, and he wasn't able to sleep through the night. His colon was severely and entirely inflamed.

After doing more search, I only found a few places in the world which perform FMT - Buenos Aires and Sao Paulo! But a friend of mine suggested looking in Russia (I'm from Moscow), and I've found a hospital in Moscow that does experimental FMT procedures.

Long story short, we were in Russia and my husband went through 10 sessions of FMT procedure along with the medication and diet adjustments. His Russian doctor insisted that he gave up gluten, sugar, and nightshade vegetables - the doctor said, autoimmune diseases and these food items are just not compatible. But most of all, he told him to reconsider the connection between his thoughts/mind and the body. It sounds so simple, but it was a sort of revelation for my husband at that point. I don't know what exactly helped, but he got slowly better.

Fast-forward to the present time:
My husband is currently 140 pounds, sleeps through the night, has almost regular bowel movements like normal human.
He follows a gluten free and nightshade free diet and mostly sugar free.
He is almost off his medications except for 1 pills of Mesalamine, he even stopped taking imuran.

Based on my limited knowledge, I give him a cocktail of: NAC, L-glutamine before breakfast; Vitamin D + K, CoQ10 with PQQ, Omega 3 and Mesalamine 1 pill after breakfast.

Occasionally, I give him Sodium Ascorbate, vitamin A, Methyl Folate.

He notices how his stress affects his body: tension in the stomach, tension in the mind, thoughts. He immediately tends to his needs and wants now, changes his pattern and that makes the whole difference.

It seems this regimen is keeping him in remission. Is there anything I should take into consideration? I'm waiting for hubbie to get new bloodwork to see if he has any deficits.

I'm looking at MitoLipin - Liquid Saturated Phosphatidylcholine (PC) Mix to purchase, it seems it fits to his needs and condition. Am I in the right direction?

 

[Asya_D]

@haidut sorry, I'm new to the Forum, should have tagged you when I referred to you! Thank you!

 

[dreamcatcher]

Well cooked white button mushrooms eaten daily and excluding vegetables for the time being might provide great help!!
I had a history of gut issues with loose stools and diarrhea for over 8 months. The suggestion above was advised to me by Ray Peat.

 

[Creative Nature]

If you look up @charlie's posts on ulcerative colitis, you will find valuable information on benefits of B vitamins for UC.

It's a safe bet that Ray Peat would not recommend taking fish oil for UC (see Peat's article, The Great Fish Oil Experiment).

You wrote: "But most of all, [the Russian doctor] told him to reconsider the connection between his thoughts/mind and the body. It sounds so simple, but it was a sort of revelation for my husband at that point. I don't know what exactly helped, but he got slowly better."

For the benefit of readers (including me) with an interest in this topic, can you please tell us what the Russian doctor told your husband about the mind-body connection?

 

[Tristan Loscha]

Very soft boiled eggyolks, high protein/as much as it is tolerable, all vitamins.

 

[Steven]

Hi Anastasia,
I've colitis for 6 years now and I've tried a lot of things but nothing was so convincing as topical progesterone dissolved in vitamine e. The brand I use is progest-e. The trick is not to be afraid of bigger dosages than normal. I rub like 10 a 30 drops on my skin around the inflamed area. After an hour or so I experience better breathing (CO2) which means it's working. I'm doing this now almost everyday and I 'm planning to do it less frequently in the hope to be fully cured without taking anything anymore in the future. Now I even don't have to use the beclometason klysma's anymore and I take less oral mesalazina. If you take a big dosage progest-e, it works just as good.

 

[Asya_D]

Well cooked white button mushrooms eaten daily and excluding vegetables for the time being might provide great help!!
I had a history of gut issues with loose stools and diarrhea for over 8 months. The suggestion above was advised to me by Ray Peat.

I have done so much reading on the subject, and still finding new info! Thank you, I will look into the white button mushrooms!

PS. I apologize for the late response!

 

[Asya_D]

If you look up @charlie's posts on ulcerative colitis, you will find valuable information on benefits of B vitamins for UC.

It's a safe bet that Ray Peat would not recommend taking fish oil for UC (see Peat's article, The Great Fish Oil Experiment).

You wrote: "But most of all, [the Russian doctor] told him to reconsider the connection between his thoughts/mind and the body. It sounds so simple, but it was a sort of revelation for my husband at that point. I don't know what exactly helped, but he got slowly better."

For the benefit of readers (including me) with an interest in this topic, can you please tell us what the Russian doctor told your husband about the mind-body connection?

I read at least few threads here on UC, but I will look into Charlie's posts, thank you!

I was just listening to one of @haidut 's podcasts about Dementia and heard about the contradiction of Omega 3! And here I thought it was the safest supplement.

First of all, the doctor said: "if you think that FMT wouldn't work - it wouldn't"; he wasn't saying that FMT wouldn't have any effect biologically, it would. But our thoughts/belief will make it work better (in the way placebo works, I guess? sorry, I'm not gonna pretend I'm smart enough :)
He also suggested that my husband should go and talk to a psychotherapist and dig deep into psychosomatic reasons for the disease. My husband talked to this specialist (again back in Russia) for 3 hours and she was digging quite deep into his understanding of cause and effect (I was helping with the translation as my husband grew up in the US, his Russian skills are not that advanced)

So sum it up, the Russian doctor's main message was - understanding the cause of the conflict/psychological issues is the first step to resolve the disease in the body.

It's been 2 years since then, and I found few sources on the topic matter:
1) super basic and maybe too "spiritual" - Louise Hay's heal your body - don't call it lame! :) every time I check the disease and the reasons for it - it matched the person and his/her troubles
2) more academic - Dr Gabor Mate's "When the body says no". The chapters on Ulcerative Colitis and RA (my mom) literally described my husband and my mom's childhood issues
3) Even more academic and biological - German New Medicine and the theory of unresolved conflicts and its effects on the organs

Believe it or not, the more me and my husband discussed the above sources, psychosomatic reasons of diseases - the more my husband started being "in tune" with his thoughts/feelings and reactions in the body

PS. Sorry for the late response!

 

[Inaut]

Hydrogen rich water. Might help @anas

 

[Asya_D]

Hi Anastasia,
I've colitis for 6 years now and I've tried a lot of things but nothing was so convincing as topical progesterone dissolved in vitamine e. The brand I use is progest-e. The trick is not to be afraid of bigger dosages than normal. I rub like 10 a 30 drops on my skin around the inflamed area. After an hour or so I experience better breathing (CO2) which means it's working. I'm doing this now almost everyday and I 'm planning to do it less frequently in the hope to be fully cured without taking anything anymore in the future. Now I even don't have to use the beclometason klysma's anymore and I take less oral mesalazina. If you take a big dosage progest-e, it works just as good.

Hi Steven! Thank you so much for the reply!Again something completely new I found out today. We definitely will try if the flare comes back

 

[Asya_D]

Hydrogen rich water. Might help @anas

- honey, what do you want for Xmas?
my answer will be "hydrogen water maker"

 

[Inaut]

- honey, what do you want for Xmas?
my answer will be "hydrogen water maker"

Hahaha I'm not involved with this company in anyway but I can recommend the H2 Nano water generator by Hydrogen For Health :)

 

[Asya_D]

Hahaha I'm not involved with this company in anyway but I can recommend the H2 Nano water generator by Hydrogen For Health :)

I didn't even have to ask! Thank you, I just started looking for the brands :)

 

[Andman]

glycine powder got me out of a bloody colitis flare up around may 2019 very quickly when nothing else seemed to work

 

[Asya_D]

glycine powder got me out of a bloody colitis flare up around may 2019 very quickly when nothing else seemed to work

Thank you! I forgot to mention that we used amino-9 acid powder&L-glutamine+whey protein isolate mix during the flare up - that helped a lot. I will keep in mind your comment if flare comes back!

 

[Zpol]

Have you heard of the Specific Carbohydrate Diet? It's quite helpful for inflammatory bowel disease. I wouldn't do the whole protocol but the main effective thing about it is the elimination of all starches and gum additives (for basically the same reasons RP recommends against them). I personally have had profound success with eliminating these foods. Avoiding gluten, dairy, and nightshades helped but was not enough to quell my bowel inflammation personally. My inflammation was due to Celiac but the SCD was created for UC and Crohn's primarily. Within a week of eliminating starches, the constant pain in my guts reduced by about 85%. Best thing I ever did for my health. Additionally, I needed digestive support and started taking a bovine pancreas supplement. I don't know if these things would help your husband but maybe somethings to consider if things get bad again.

 

[Asya_D]

Have you heard of the Specific Carbohydrate Diet? It's quite helpful for inflammatory bowel disease. I wouldn't do the whole protocol but the main effective thing about it is the elimination of all starches and gum additives (for basically the same reasons RP recommends against them). I personally have had profound success with eliminating these foods. Avoiding gluten, dairy, and nightshades helped but was not enough to quell my bowel inflammation personally. My inflammation was due to Celiac but the SCD was created for UC and Crohn's primarily. Within a week of eliminating starches, the constant pain in my guts reduced by about 85%. Best thing I ever did for my health. Additionally, I needed digestive support and started taking a bovine pancreas supplement. I don't know if these things would help your husband but maybe somethings to consider if things get bad again.

Yes I have and we have :) I omitted few facts from the story, but we (I say "we" because I'm the chef) have tried vegetarian path, SCD, FODMAP and AIP; I introduced AIP right before our trip to Russia for 40 days, but unfortunately, my beloved better half cheated with Burger King in between... somehow the words of this Russian doctor had a tremendous effect on him, and since then he stopped eating the listed items and never ate junk food again.
After the elimination diet, my hubbie realized he is very good with rice, potatoes and when the inflammation was less severe - he intuitively introduced walnuts into his diet (he is Armenian, so walnuts is a staple food for the nation); but it turned out, his intuition was on point - Dietary Walnut Supplementation Alters Mucosal Metabolite Profiles During DSS-Induced Colonic Ulceration - it was really beneficial for him, he felt better!

 

[Zpol]

Yes I have and we have :) I omitted few facts from the story, but we (I say "we" because I'm the chef) have tried vegetarian path, SCD, FODMAP and AIP; I introduced AIP right before our trip to Russia for 40 days, but unfortunately, my beloved better half cheated with Burger King in between... somehow the words of this Russian doctor had a tremendous effect on him, and since then he stopped eating the listed items and never ate junk food again.
After the elimination diet, my hubbie realized he is very good with rice, potatoes and when the inflammation was less severe - he intuitively introduced walnuts into his diet (he is Armenian, so walnuts is a staple food for the nation); but it turned out, his intuition was on point - Dietary Walnut Supplementation Alters Mucosal Metabolite Profiles During DSS-Induced Colonic Ulceration - it was really beneficial for him, he felt better!

Interesting. Glad he was able to determine some safe foods.

Your situation is a bit like mine with my husband who has cardiovascular disease. I do the cooking as much as possible (and the research!); he'll eat what I cook but outside that he still has junky stuff sometimes. Maybe he just needs to hear to hear it from someone other than me like with your husband and the Russian doctor.

Very inspiring story! Glad you shared it here.

 

[Wilfrid]

You may find valuable informations (therapeutics, supplements, useful explanations ect....) about IBD in this article:
https://sci-hub.st/downloads/2019-11-16/91/hedayat2019.pdf
If tolerate, milk and its fermented derivatives (cheeses, strained yogurt ect...) are probably the most effective and therapeutic agents (best food source for stimulation of intestinal alkaline phosphatase (a powerful intestinal anti inflammatory agent), as well as calcium, protein and thyroid support) long term. Ray’s cooked potato juice recipe. Raw carrot is one of the safest raw fiber around as well as one of the most therapeutic food for intestinal health.
Depending on its availability in your country, a spore forming probiotic (with a solid historical medical utilisation) like Enterogermina (made by Sanofi) is very safe and strongly therapeutic. It has been used in Italy since the 50’s for infants and adults and its therapeutic action is wide.
A good vitamin K supplement, once a week, can help tremendously as well.
By good vitamin K supplement, I mean one made with safe ingredients and/or excipients.
Jarrow formula K-Right is one of those. Piercing the capsule, mixing and incorporating it in food (like in the cooked potatoes juice I mentioned above) are the best way to take it.

 

[Asya_D]

You may find valuable informations (therapeutics, supplements, useful explanations ect....) about IBD in this article:
https://sci-hub.st/downloads/2019-11-16/91/hedayat2019.pdf
If tolerate, milk and its fermented derivatives (cheeses, strained yogurt ect...) are probably the most effective and therapeutic agents (best food source for stimulation of intestinal alkaline phosphatase (a powerful intestinal anti inflammatory agent), as well as calcium, protein and thyroid support) long term. Ray’s cooked potato juice recipe. Raw carrot is one of the safest raw fiber around as well as one of the most therapeutic food for intestinal health.
Depending on its availability in your country, a spore forming probiotic (with a solid historical medical utilisation) like Enterogermina (made by Sanofi) is very safe and strongly therapeutic. It has been used in Italy since the 50’s for infants and adults and its therapeutic action is wide.
A good vitamin K supplement, once a week, can help tremendously as well.
By good vitamin K supplement, I mean one made with safe ingredients and/or excipients.
Jarrow formula K-Right is one of those. Piercing the capsule, mixing and incorporating it in food (like in the cooked potatoes juice I mentioned above) are the best way to take it.

Thank you so much for the tremendous amount of useful information!
I start Anatomy class next January here in Michigan, so this PDF is going to be super helpful and handy.

Just to double-check - do goat milk and derivatives also have the same mechanism as cow milk, right? He only tolerates goat milk/yogurt/kefir very well, one of favorite foods!

I started my day with the carrot salad today, hubbie said he'd join me tomorrow (he wasn't mentally prepared this morning LoL); the potato juice is something new, I will read into it today.

I found this on Amazon - https://www.amazon.com/Enterogermina-2-Billion-20-Vials/dp/B07H7QTPCM looks like this is the item you are describing.

I've been giving this vitamin K supplement along with vit D - https://www.amazon.com/Life-Extensi...jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==
But Jarrow formula seems to have better ingredient list! (Life extension has cellulose and maltodextrin - I know they are not that bad, but why add?)