Ulcerative Colitis - Support During The Remission?

[Asya_D]

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.

Sending you a virtual sympathy hug!
No matter how hard I tried, until this Russian doctor came along - my husband didn't listen to me much - it feels like he really needed to hear it from the third person and not me; but it coincided with him hitting the rock bottom with his health (when he literally was talking about dying young (he is 35 today, so he was 33 back then) - so it was also the right timing, I guess.

I truly hope your hubbie would hear - if not you, at lease someone else!

 

[solomon]

I had UC before, I have four things to say:
1, cyproheptadine
2, Cascara Sagrada: taking it for longer time made my gut like a steel and helped me handle large amount of milk, oranges
3, gelatin food every day
4, magnesium: taking this for the first time stopped the symptom within hours.

I started from the usual ray peat recommendations, like lots of carbs, high quality proteins, thyroid, aspirin, coffee, avoid easily undigestable foods

 

[Wilfrid]

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-Extension-Super-90-Softgel/dp/B07RL1J9BV/ref=sr_1_1_sspa?crid=2O17MCZ74HI10&dchild=1&keywords=life+extension+super+k+with+advanced+k2+complex&qid=1606832206&sprefix=life+extension+super+k+wi,aps,166&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUFMMlQ5ME1SRVZUNDcmZW5jcnlwdGVkSWQ9QTAzNDAzMDYxWTRGWlc3TDhPTVQyJmVuY3J5cHRlZEFkSWQ9QTA3NjE3NjgzUUZHM0kyRElUMTQwJndpZGdldE5hbWU9c3BfYXRmJmFjdGlvbj1jbGlja1JlZGlyZWN0JmRvTm90TG9nQ2xpY2s9dHJ1ZQ==
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?)

Yes, this is the correct one but I think that the 4 billion one will be even better.
Goat milk is a very good alternative to cow’s milk providing the goat have access to non-allergenic food supply.
So far, I did not find a safest vitamin K supplement that I would take via oral route other than the Jarrow’s.

 

[Ben.]

2, Cascara Sagrada: taking it for longer time made my gut like a steel and helped me handle large amount of milk, oranges

Wow, that sounds great. Aren't there downsides to cascara? How and how often did u use it? and for how long?
I've read like every "laxative" it can cause potassium deficiency and it also can result in a black/brown colouring to the colonic mucosa (w/e that means)?

Castor oil for 1-2 weeks every other day caused serious issues for me for example.

Ofcourse i've read the Article on ray peats website but perhaps i should search the forum for more detailed informations in terms of usage etc.

 

[Asya_D]

I had UC before, I have four things to say:
1, cyproheptadine
2, Cascara Sagrada: taking it for longer time made my gut like a steel and helped me handle large amount of milk, oranges
3, gelatin food every day
4, magnesium: taking this for the first time stopped the symptom within hours.

I started from the usual ray peat recommendations, like lots of carbs, high quality proteins, thyroid, aspirin, coffee, avoid easily undigestable foods

All of your points made sense to me except for 2. I did quick search and it seems like it's literally the opposite of desired outcome (laxative)

3 -> another point I forgot to mention, I literally was cooking bones daily for hubbie, that soothed his tummy
4. Do you remember which magnesium form you took?

Coffee seems also counterintuitive, at lease for my hubbie - he right away feels like he needs to run to the bathroom even now

 

[Asya_D]

Yes, this is the correct one but I think that the 4 billion one will be even better.
Goat milk is a very good alternative to cow’s milk providing the goat have access to non-allergenic food supply.
So far, I did not find a safest vitamin K supplement that I would take via oral route other than the Jarrow’s.

Couldn't find 4 bil, we will start with 2!

By the way, thank you again for the PDF link. This is the best thing I've read throughout the years. I so wished I had this 2 years ago!

 

[Creative Nature]

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!

Thanks very much for describing the Russian doctor's view of the mind's role in healing and listing the resources you've found useful for understanding this topic. I'll check them out.

I can't say I've had any huge breakthroughs yet in fixing my health using mind-body techniques, but some of them definitely help me, and every so often, I get a tantalizing glimpse of their power. Very glad to hear they're helping your husband. I wish him continued success.

 

[Asya_D]

Thanks very much for describing the Russian doctor's view of the mind's role in healing and listing the resources you've found useful for understanding this topic. I'll check them out.

I can't say I've had any huge breakthroughs yet in fixing my health using mind-body techniques, but some of them definitely help me, and every so often, I get a tantalizing glimpse of their power. Very glad to hear they're helping your husband. I wish him continued success.

Please take a look at the PDF file @Wilfrid shared! It also explains a lot about psychological part of the issue.
Thank you so much for your kind words!

 

[solomon]

Wow, that sounds great. Aren't there downsides to cascara? How and how often did u use it? and for how long?
I've read like every "laxative" it can cause potassium deficiency and it also can result in a black/brown colouring to the colonic mucosa (w/e that means)?

Castor oil for 1-2 weeks every other day caused serious issues for me for example.

Ofcourse i've read the Article on ray peats website but perhaps i should search the forum for more detailed informations in terms of usage etc.

All of your points made sense to me except for 2. I did quick search and it seems like it's literally the opposite of desired outcome (laxative)

Coffee seems also counterintuitive, at lease for my hubbie - he right away feels like he needs to run to the bathroom even now

4. Do you remember which magnesium form you took?

I started from very low dose by breaking 250mg capsule into 10, and work my way up to 500 mg a day. This is because taking the whole capsule at beginning had very laxative which may look it is aggravating the UC symptoms. But, Seeing my tolerance increase to cascara as I up the dose is how I gauged my gut was improving. The same thing goes for coffee; I was never coffee drinker, and was unthinkable when I had the UC. I started very low dose.

There are safety concerns for long term usage of Cascara, but this is only happening when taking very high doses like more than tea spoon a day if I remember correctly.

I believe the idea of remission is only concealing the symptoms without treating the underlying issue. When I was treating the UC symptoms using predinsolone, remicade, entyvio what not from doctors prescriptions, I got on remissions, but this did not last when I go off of it. I was experiencing many side effects which is not sustainable for long term. It felt like revving up a car engine 150km/hrs for longer period. It was only when I correct the issue from bio energetic view that I felt there is no going back to sickness.

I used magnesium glycinate. Now days, I just take bath using MgCl mineral.

 

[Asya_D]

I started from very low dose by breaking 250mg capsule into 10, and work my way up to 500 mg a day. This is because taking the whole capsule at beginning had very laxative which may look it is aggravating the UC symptoms. But, Seeing my tolerance increase to cascara as I up the dose is how I gauged my gut was improving. The same thing goes for coffee; I was never coffee drinker, and was unthinkable when I had the UC. I started very low dose.

There are safety concerns for long term usage of Cascara, but this is only happening when taking very high doses like more than tea spoon a day if I remember correctly.

I believe the idea of remission is only concealing the symptoms without treating the underlying issue. When I was treating the UC symptoms using predinsolone, remicade, entyvio what not from doctors prescriptions, I got on remissions, but this did not last when I go off of it. I was experiencing many side effects which is not sustainable for long term. It felt like revving up a car engine 150km/hrs for longer period. It was only when I correct the issue from bio energetic view that I felt there is no going back to sickness.

I used magnesium glycinate. Now days, I just take bath using MgCl mineral.

Thank you, @solomon! I have glycinate form at home, so will add this to my hubbie's diet -as he doesn't take bath that often!

Fascinating about Cascara. I have a mental note now in case we need it in the future!

 

[GorillaHead]

I had full blown UC. Colonoscopy diagnosed. Biggest symptom was streaks of blood all the time. Second symptom constipation. I attribute the problem To pounding 2 mass gainers a day and a hypersensitivity to milk

mesalamine did not work. I stopped all pharma drugs after that. I spend probably 2000 hours of my life researching it. I avoided milk started high dose niacin therapy. Then started using Apple pectin fiber and then fucoidans. I now no longer do any of these therapies and I can drink milk.

ive been symptom free and diagnosed free of any visual issues in my colon for almost 2 years now. I eat whatever I want.

i believe the cause was a combination of gut disbiosis. Deficiencies and oxidative stress

 

[Asya_D]

I had full blown UC. Colonoscopy diagnosed. Biggest symptom was streaks of blood all the time. Second symptom constipation. I attribute the problem To pounding 2 mass gainers a day and a hypersensitivity to milk

mesalamine did not work. I stopped all pharma drugs after that. I spend probably 2000 hours of my life researching it. I avoided milk started high dose niacin therapy. Then started using Apple pectin fiber and then fucoidans. I now no longer do any of these therapies and I can drink milk.

ive been symptom free and diagnosed free of any visual issues in my colon for almost 2 years now. I eat whatever I want.

i believe the cause was a combination of gut disbiosis. Deficiencies and oxidative stress

Agh, @GorillaHead, can imagine your anguish! seen it firsthand.

I read few forum threads here about Niacin! Fascinating, and I deeply appreciate you sharing your experience as well.
I thought I had Apple pectin at home, but just opened my pantry and only saw inulin, acacia fiber and psyllium. Gotta add pectin then :)

My husband still takes 1 pill of mesalamine a day (1200 mg)(that's the only medication he takes) - partially he still thinks it keeps him "going", but I'm not knowledgable enough to know or be sure.

 

[GorillaHead]

Agh, @GorillaHead, can imagine your anguish! seen it firsthand.

I read few forum threads here about Niacin! Fascinating, and I deeply appreciate you sharing your experience as well.
I thought I had Apple pectin at home, but just opened my pantry and only saw inulin, acacia fiber and psyllium. Gotta add pectin then :)

My husband still takes 1 pill of mesalamine a day (1200 mg)(that's the only medication he takes) - partially he still thinks it keeps him "going", but I'm not knowledgable enough to know or be sure.

Inulin for me was a no go. It just gave me lots of gas and solved nothing. I really think you should have your husband think about the time before he developed symptoms. Think about what his diet was like. Doctors will tell you its not diet related i believe this to be a massive lie.

my sister was a researcher in gastroentology at a renowned university and she told me probiotics almost never help so avoid those. I suggest PREbiotics. Also try everything for a week at least. Everything safely! Have him use his best judgement. But i have like 2000 dollars worth of supplement all 80% full. I tried eevrything like a guinea pig. Above all Don't give up.

hope you find success

 

[Ben.]

Inulin for me was a no go. It just gave me lots of gas and solved nothing. I really think you should have your husband think about the time before he developed symptoms. Think about what his diet was like. Doctors will tell you its not diet related i believe this to be a massive lie.

my sister was a researcher in gastroentology at a renowned university and she told me probiotics almost never help so avoid those. I suggest PREbiotics. Also try everything for a week at least. Everything safely! Have him use his best judgement. But i have like 2000 dollars worth of supplement all 80% full. I tried eevrything like a guinea pig. Above all Don't give up.

Interesting. Dr. Jason Hawrelak whos clinically working with pro and prebiotics said the same thing in a Podcast. Prebiotics and Diet are the most effective way to help with getting the gut in order.

mesalamine did not work. I stopped all pharma drugs after that. I spend probably 2000 hours of my life researching it. I avoided milk started high dose niacin therapy. Then started using Apple pectin fiber and then fucoidans. I now no longer do any of these therapies and I can drink milk.

Cool that you were able to help yourself. How did you end up with apple pectin and fucoidans being the solution? Did you just go trough all kinds of prebiotics and went with how you felt? Also how did you dose it? 4-6 gram per day? What do you think about HMO's and the claim that as they are found in Human breastmilk they are less likely to feed into unfavourable bacteria?

Got some Galacto-Oligosacharide and 2'-Fucosyllactose lying around i didn't get to test yet. fucoidans are usually uncommon in places away from the shore right? Where i live, people dont eat brown algea at all. Wonder if it could still be helpfull for me or others.

You said to check what her husband ate before he developed symptoms ... why exactly? Do you think it was the cause ... or could foods he grew up with lead to healing/restoring the gut?

 

[Julian]

I recently found out about German New Medicine and I just saw this interview. I'm not sure what to think yet, but I thought I'd share.

 

[Asya_D]

I recently found out about German New Medicine and I just saw this interview. I'm not sure what to think yet, but I thought I'd share.

I've been telling my husband about GNM for so long. His symptoms are back a bit, so @Julian , your post couldn't be more timely. Thank you so much. I hope he will watch it today

 

[Julian]

I've been telling my husband about GNM for so long. His symptoms are back a bit, so @Julian , your post couldn't be more timely. Thank you so much. I hope he will watch it today

You're very welcome. I hope it helps him.

What has your experience been with GNM?

I just discovered it and I'm reading and watching videos about it. I find it quite extreme that they basically say all disease is because of these emotional/trauma shocks. But the stories of the results that people get are amazing.

I'm trying to make sense of it all :P

 

[Ben.]

I just discovered it and I'm reading and watching videos about it. I find it quite extreme that they basically say all disease is because of these emotional/trauma shocks. But the stories of the results that people get are amazing.

I'm trying to make sense of it all :P

I am very intrigued by the concept of gnm but i would be careful. On the official site they charge 400$ for online courses and this mike guy you posted does the typical "enlist in the course now for 497$ before its back at 1000$ again!" scam scheme.

While alot of the information presented is huge, the actual practical part is supposed to be dead simple and in no way would learning any of it cost that much and if they had any empathy for suffering people, then the prices wouldn't be nearly that high.

They also do not offer more detailed explanations in identifying "tracks" (which is nothing but a subconscious trigger) and ways to resolve them. Watched a few videos of this mike guy and it basicly is "identify it and then convince yourself its not an issue anymore" ... yeah no ***t sherlock but how if the trigger can be anything from a scent, noice, visual to a dietary ingridient etc....

Basic trauma resolving is what they do, which is nothing new in particular and used troughout psychological therapy sessions and the likes. Reminded me alot on joe dispensa which is basically a guy needing you to follow his cult that requires you to spend tons of money to attend a event to "learn it properly". They use meditation but the idea and principles are very similar.

I find it interesting to apply these techniques to overcome panic attacks, ptsd and other trauma stress responses for other health issues like digestion, tinnitus etc.
But i would refrain from following or buying into these people and look up for resolving techniques that one can find for free and which have been applyed and established succesfullly for panick attacks or ptsd. And its stuff like meditation, disconnecting/resolving the subconcious link towards the trigger and the reaction etc.

---

TLDR:

Safe money and do not buy into gnm products or the courses from this mike guy and simply apply the idea of trauma stress responses and its resolvement towards your health issues as another tool/idea/approach in resolving them.

Mental work and Mental hygiene is very powerful and should be used along other things in the health journey but do not waste money on these people.

 

[mostlylurking]

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?

Please consider the information in this article: When SIBO & IBS-Constipation are just unrecognized thiamine deficiency

In addition, it's important to have good thyroid function; without it the body cannot heal itself. Has he been tested for hypothyroidism? If yes, what tests were done? Did they check free T3 and reverse T3?

 

[Quelsatron]

There was a case posted somewhere in the forum where a woman used coconut oil enemas to basically cure her (I think) UC. you should be able to find it by searching coconut oil enema.