A good news. Is this real? Anyone with the same experience here?

Symptoms & Treatment Complementary Therapies
1

Dear All,

I am sharing my experience, I know everyone is different and I know it might be only me. But I thought it worth sharing anyway.

I joined this group a few months ago following my son’s (15yo) diagnosis of stage 2 PSC and UC, back in October and December 2017.
As you can imagine, we felt hopeless as doctors were saying there is no treatment and reading all the things that are on the internet, we were just overwhelmed… I posted a couple of messages here and enjoyed support, tips and understanding of great people here…
I posted this link as well and got few feedbacks… thanks to everyone.

Doctors prescribed Sulfasalazine for him and he suffered from side effects and flare-ups.

Now, what I would like to say:

We decided to do something about it, we stopped the drug, planned a natural healing process and kept the points described in the above video in mind:

1- Fix the leaky gut by food (one-month-long process)
2- Cultivate good bacteria in the gut using the most potent probiotic available and all kind of cooked organic prebiotics, lots of fruits and cooked vegetables.
3- Avoid any kind of bad, fast and fried food, gluten and dairy products (even kefir).
4- taking 2000IU liquid vitamin D
5- Removing almost all sources of stress.

We had several tests in the last month and our review with our hepatologist and GI doctor in the hospital yesterday and the results to our surprise:

1- MRE results showed, improvement in CBD (from 12mm to 7mm, almost normal) all other things back to normal, no signs of IBD anymore!
2- Blood work almost normal, all enzymes either in the range (near the upper limits though) or slightly above the range which doctors were saying “don’t worry about them”.

Both doctors were surprised, they said: “keep doing what you are doing (!!!), stop all the medication and just take Vitamin D and come back in 6 months for another evaluation”. The reaction of our hepatologist was very interesting, he said: “I don’t know what happened but it is a good news!”…

We are very happy now, I do not know if it is a temporary thing or not, and I do not know if anyone else has or had such experience.

Your comments are appreciated,

9 Likes
2

That’s wonderful news! I know gut health is very important and I’ve heard many people with IBD have had success with a similar plan/diet. I don’t have IBD, so I can’t speak to that, but I’m happy to hear that it is helping your son!

2 Likes
3

I started a whole foods plant based diet before my diagnosis. I limit oils as much as possible. I’ve just started taking extra d, 5000 iu/day. My enzymes still swing, but there not as bad as others I’ve seen here.
This post gives me some validation and hope.
Thank you for sharing!

2 Likes
4

My 15 year old son was also diagnosed last octuber with UC and PSC. I was devasted. He is on vancomycin now and doing well. Keep us uptated on your son’s progress, please.

1 Like
5

Hi Leonora,

Thanks for your reply, I am not a medical professional or expert by no means, and I am just educating myself.
I recommend you get hold of Science magazine dated march 9th, 2018. Pages 1097 and page 1156 (for copyright reasons, I cannot share my copy, but the magazine is available either online or at most libraries), here is my understandings form those articles:
1- Vancomycin kills a bacteria called E-Gallinarum in the gut which is suspected that once leaked to blood stream from gut, would causes autoimmune reaction in the liver.
2- It looks like Ampicillin (which is much cheaper than Vanco) has almost the same effect on mice, (talk to your doctor! vanco is bloody expensive!).

My theory which I applied to my son (we could not find any doctor to prescribe vanco) was first stop leaking (preventing the bad bacteria to escape from the gut) and to out number those nasty germs by good germs in order to kick them out of his gut (using high dose probiotics with plant based prebiotics- all organic)… we stopped Sulfasalazine (Non-Steroid Anti Inflammatory drug) since it (like Aspirin) is suspected to make the gut even leakier!

I am afraid of antibiotics since they kill good and essential bacteria as well.

Again, I am not a medical professional and I am not in anyways giving a medical advice here, but I am just sharing my experience, hoping that helps others and helping myself as well with receiving comments and experiences form other people with similar conditions.

3 Likes
6

Hi Bob,

Thanks for your reply. Would you mind sharing what probiotic you give your son?

2 Likes
7

Please check your private message box, I do not want to advertise a specific brand or product here.
Did you get it?

1 Like
8

Hi Bob,
Great to read, thank you!
I’d love to hear what probiotics you use. I take them daily and have for some time, but I’m curious. I also eat a lot of fresh fruit but find that I’m very sugar intolerant, so looking to cut back on fruit a bit.

Hope you keep coming here with updates - very happy for ALL of you!
Best,
Jennifer

3 Likes
9

Please check your private message box, I do not want to advertise a specific brand or product here.
Did you get it?

10

Bob 07
Bob that is fantastic news for your son. The article is very interesting and is something researchers have been playing with for ages. I had UC and now have PSC. I lost my entire colon to a massive infection (toxic megacolon) some time back and was then diagnosed with PSC. In your research, is the use of probiotics and your diet still worthy if you dont have a colon (gut) no more since does your small intestine leak like your old large (colon).

The reason I ask, was that an old remedy offered a few years back was a “floral” infusion. This turned out to be less appealing that what the procedure is made to sound. Basically they inject a mixture of healthy “stool” back into your colon to repopulate your healthy bacteria thus giving them a fighting chance to fight the bad ones. They told me then it was worthless since I didnt have a large colon.

What are your thoughts/ research.

1 Like
11

Bob07
Could you also private message me the probiotics name as I might start my kids on them before they get sick. (I dont know how to send a private message) so hopefully I can open it.

12

Hi GazfromAus,
I am sorry but I am afraid to say that I do not know, I have not done a research on this specific topic, if I come across something, I’ll let you know.
But I am well aware of Fecal microbiota transplant (FMT) or simply stool transplant and entertained the idea of doing it for my son but we didn’t.
From my research, one should do 2 things at the same time:
1- Prevent (heal) leaking from gut
2- Out number and starve bad germs
That’s what I have learned and it is working so far…

1 Like
13

Hello again GasfromAus,

I sent you the PM, please let me know if you have got it.

14

Hi, could you share the probiotic you give your son with me also. Thank you. Kim

1 Like
15

Just sent you a PM, did you get it?

16

Hi Bob,
Can you PM me with the info as well? Great news. Interesting link.

1 Like
17

Just PMed you, did you get it?

18

yup…thanks

19

Bob,
It’s fine to share the name of the probiotic in this post if you wish. It certainly has sparked interest. Thanks.

Mark

2 Likes
20

Hi Mark,

Sure, name of the probiotic is VSL#3…

I have to say, we started from a less potent one and gradually got to full dose…

Best Regards,
B

1 Like