MC lightbulb... Journey begins

[Daniel512]

Hey All,

I just read Tex’s book & am exploring this great site.

In 2017 I had a viral flu that nearly took me out. Eventually I beat it & recovered my strength, but my colon became aggravated and basically never came out of it.

It got crankier over months until I was reacting to most foods, reactions of all sorts: stomach, small intestine, colon… due to texture, fat content, allergic quality… Colon pain & irritation, WD, bloating, occasional constipation. Eventually other symptoms like joint pain, dry eyes, brain fog, fatigue, and systemic reactions to fragrances like essential oils. I dropped from 145lb to 112lb, until figuring out my "safe diet" and getting back to 145.

I eat the foods that I tolerate best, same each day: Cashew milk enriched with bovine collagen powder & fructose powder, and 100% buckwheat soba noodles (homemade) with HB eggs and chicken bone broth, coconut oil, sea salt.

I’ve worked with various alternative doctors (Ayurveda, Naturopath, Homeopath) and ruled out pathogens & parasites, but I react to most herbs / supplements / medicines, and those I tolerate have not helped.

I’ve always felt that my condition is “more inflammatory than IBS, but less bloody than Crohns & UC” - so when heard about MC a lightbulb went on. I haven’t had a colonoscopy/biopsy.

I just started with a local integrative doctor (conventional & naturopathic). We ordered compounded Bismuth 8doses/8wks (I colon-reacted to Pepto but it has a ton of ingredients), as well as compounded slow release Budesonide. She also wants me to try l-Glutamine.

I ordered the EnteroLab A1+C1. Losing any foods would be concerning, but better to have the data.

A few questions:
- If I react to bismuth & budesonide, should we try bypassing my gut reactivity by injecting steroids to achieve initial remission? And maybe transition to budesonide afterwards… Has anybody done this? With what steroid, and what protocol?

- Has anybody had luck with l-Glutamine 10g/day? The repairing leaky gut concept is appealing…

- If I can get my doctor to continue treating empirically, is there any need for the colonoscopy/biopsy? It seems like the wrong thing to do to my colon right now.

Thanks,
-Daniel

[tex]

- If I react to bismuth & budesonide, should we try bypassing my gut reactivity by injecting steroids to achieve initial remission? And maybe transition to budesonide afterwards… Has anybody done this? With what steroid, and what protocol?

I'm not aware of anyone who's tried injecting a steroid. The closest I can come is a member who used a short prednisone treatment to shock has immune system into remission.

It took me a while to find this old post, but I finally located it:

viewtopic.php?t=4794

- Has anybody had luck with l-Glutamine 10g/day? The repairing leaky gut concept is appealing…

A few people have tried it, years ago, but I don't recall anyone reporting any impressive results.The intestines heal very slowly. After the inflammation is stopped, with a squeaky clean diet, the antibody levels will slowly decline, and the intestines will heal, but it takes years for them to completely heal. That doesn't mean that we won't reach remission much sooner than that (usually in about 2 to 3 months, but some of us take six months to a year or more, to reach remission.

- If I can get my doctor to continue treating empirically, is there any need for the colonoscopy/biopsy? It seems like the wrong thing to do to my colon right now.

It appears that you've pinpointed the problem, so I don't see any reason why you would need a colonoscopy, unless your family has a history of colon cancer.

At least, those are my thoughts.

Tex

[Gabes-Apg]

Daniel

Prior to my MC issues - I used liquid herbs frequently. Once MC came along, I can not do any liquid herbs, even after periods of stable remission I still can not tolerate them

In regards to healing leaky gut, there are lots of products /ingredients that claim to heal leaky gut.
What I have observed in the 13+ years being part of the forum is that healing takes TIME and patience. You can't fast track gut healing. there are some ingredients that help more than others but no one item works for everyone.

The other observation is there is no one single mineral/vitmain that is involved in healing, for the body (gut) to heal you need a combo of elements
- minimised inflammation. (not just foods, but also external triggers and stress)
- balanced immune system
- right nutrients, amino acids, Vit D, magnesium, Vit C, zinc are the ones most key to healing/balanced immune system


I agree with Tex, you are on the right track already. Unless there is a reason to have formal diagnosis, I would pass for now. The prep for colonoscopy is not easy. Anesthetic can be quite impacting to the body.
One thing to keep in mind with your functional practitioners, MC is not like other IBD's. the function supplement /treatment protocols that work for UC or crohns rarely work for MC

hope this helps

[Daniel512]

Thanks Gabes & Tex for the great replies. I'll post an update soon.
-Daniel

[Daniel512]

Hi Tex & Gabes,

I'm on day 11 of compounded Bismuth, which I tolerate better than pink Pepto, but it is still giving me some increased colon pain.

Since there's been no benefits, I'm feeling like stopping and moving on to trying Budesonide. But I wanted to get your opinion on whether I should stick it out for longer, in case benefits arrive eventually..? I've done 11 days, 6 doses/day, as a double-dose taken in the middle of each of three meals. Buffering mid-meal helps me avoid stomach reactions... I could try adding an AM dose as well, apart from meals, though there's some risk of a stomach reaction.

My sense is that 6 doses/day for 11 days with no benefits and mild exacerbation of colon pain, means it isn't likely to help, and to move on... But again, if I should stick it out for multiple weeks or push to get up to 8 doses/day, I could do that... Curious to hear your thoughts.

Thanks,
-Daniel

[tex]

It's your call. In the original published trial that verified the efficacy of the Pepto treatment, the average time to remission was two weeks. Here's the link, so you can review the trial study yourself:

https://pubmed.ncbi.nlm.nih.gov/9428215/

Tex

[suzieq]

Hi Daniel,

I'm currently dealing with a colitis flare. I started Pepto Bismol (pink pills) on July 7th, 9 pills a day. I take it with Colestipol, 6 pills a day and I get Entyvio infusions. On about July 17th I started having "normal" bm's. I'm entering week 6 of the 9 Pepto's a day and I average 1-2 "normal" bm's a day. Next week I reduce Pepto to 4 pills a day for 2 weeks and then 2 pills a day for 2 weeks. I will continue taking the colestipol. This is the 3rd time for me on Pepto, it worked the first time but not the second time and I'm happy that it's working this time. I just wanted to share that Pepto can work.

Susanne

[PattyD]

Hi Daniel,

I'm currently dealing with a colitis flare. I started Pepto Bismol (pink pills) on July 7th, 9 pills a day. I take it with Colestipol, 6 pills a day and I get Entyvio infusions. On about July 17th I started having "normal" bm's. I'm entering week 6 of the 9 Pepto's a day and I average 1-2 "normal" bm's a day. Next week I reduce Pepto to 4 pills a day for 2 weeks and then 2 pills a day for 2 weeks. I will continue taking the colestipol. This is the 3rd time for me on Pepto, it worked the first time but not the second time and I'm happy that it's working this time. I just wanted to share that Pepto can work.

Susanne

Thank you for this. I am going to try it.

[Daniel512]

Thanks everybody

I'm going to try increasing to 8doses/day, and continue for another 1-2wks.
I think it may not be doing much, but want to make sure I give it a fair shot.

[Marcia K]

Thanks for sharing, Suzie. I'm a Pepto success story as well.