Hello all-
I apologize for not checking in for ages. That's actually a good thing. I believe my last post was addressing cholestyramine and Betaine HCl.
I originally found y'all in 2008 when I was diagnosed by biopsy. I did Enterolab then and more thoroughly in 2016. Was functional for years being gf/df/sf...functional people, not perfect!!
Wheels fell off with stress/death of husband (and more-would make a compelling LIFETIME movie..) in 2016 and I hit the skids..missed 2.5 months of work in 2017, dropped 25# and weighed 100# (not good at 5' 6"). Anyhoo-life is better and I feel like I need to encourage others who aren't being managed with diet to experiment a little. Those of you who are at rock bottom...I was there in 2017. Thought plenty about dying and how that probably would be happening soon. I was one of those people whose Enterolab test was like all 2/3's. Nothing was safe. I ate like a Plains Indian (my coworkers terms..) for years (lamb bone broth, lamb/turkey, sweet potatoes and overcooked squash) and never could really tell you WHAT WAS SAFE TO EAT...didn't seem to matter.
I have stumbled onto a formula that seems to work for me. I have to have Sandoz brand cholestyramine. Par brand doesn't work!!! I also HAVE TO TAKE DIGESTIVE ENZYMES AND BETAINE HCL!!! Got better on the cholestyramine but not great. Read an article about Betaine HCL and tried it. To the tune of 5 capsules with lunch and dinner as those meals for me were "meat and potatoes" HEAVY duty!! Less with breakfast (like 3). Took a bit but I felt better and the urgles/gurgles went away. I have experimented with varying amounts of all of the above, actually stopped both for a bit and regretted it!! I am believing that with me stress decreases stomach acid production!!!
I have also experimented with all forms of magnesium. Have settled on lotion 2x/day. Lots of it 2x/ day. The brand I like is Elepure...I get it on Amazon. 300 mg of Mag per teaspoon. If I don't use it, I get "twitchy" and feel awful/don't sleep. I am so glad to not be slathering myself with mag oil anymore like I did...icky.
I now sleep. I have put on 18# in the past year!! Yay!! I don't look like I'm 90 anymore!! I have also started eating food again. Not craziness people, just eating things I didn't for years. Once someone tells you that you react to everything except water, you get WAY gun shy. I still haven't had the guts to try rice again as that was the 3+ thing!!! I think bile acid malabsorption was my big thing (mom is better since I've gotten her on cholestyramine, it's her family that has the "gut issues"). I've cut the Betaine HCl down-mostly do 3 capsules with lunch/dinner and 2 with breakfast.
I just want y'all to know that there can be a light at the end of the tunnel. My poop still doesn't look normal mostly and I tend to run more towards the "deer pellet" end of things...but I will take that over diarrhea any day. I took Entocort 2x over the years and I don't believe it ever did much for me.
What I got from here was support and knowing that I wasn't alone. Y'all understood me when no one else could!!! That meant the world!!! I just encourage you to try something else if nothing is working.
Laine
Update-Cholestyramine and Betaine HCl
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Update-Cholestyramine and Betaine HCl
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Laine,
What a great story and you made it a fun one! How wonderful that you have found what works for you and have gained weight and are feeling better.
I have my first box of Sandoz cholestryamine packets but haven't used one yet because I started with Colestipol tablets. What I have found is that one may be too many or not enough and via Polly's post, I figure I can titrate better with the powder. The tablets have given me lots of gas and nighttime upper gastric pain. Fingers crossed that I can figure this out.
Kudos to your success.
Susan
What a great story and you made it a fun one! How wonderful that you have found what works for you and have gained weight and are feeling better.
I have my first box of Sandoz cholestryamine packets but haven't used one yet because I started with Colestipol tablets. What I have found is that one may be too many or not enough and via Polly's post, I figure I can titrate better with the powder. The tablets have given me lots of gas and nighttime upper gastric pain. Fingers crossed that I can figure this out.
Kudos to your success.
Susan
Laine,
Great update, that's awesome news that you've got a treatment that works, and you've been able to gain some weight back.
I hope you have continued success.
Tex
Great update, that's awesome news that you've got a treatment that works, and you've been able to gain some weight back.
I hope you have continued success.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Gabes-Apg
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Laine
so happy to see a post from you and totally chuffed that it is GOOD NEWS!!! sleep, gaining weight (and that you have helped your mum!)
to be realistic, i dont think my poop is consistently normal - there are always variations. long term I see remission as minimal symptoms most of the time!
so happy to see a post from you and totally chuffed that it is GOOD NEWS!!! sleep, gaining weight (and that you have helped your mum!)
to be realistic, i dont think my poop is consistently normal - there are always variations. long term I see remission as minimal symptoms most of the time!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes, I like what you said. "Remission as minimal symptoms most of the time!" That has certainly been my goal and my poop, too, is not consistently normal.
My GI doc is a very good guy although he doesn't totally buy into food sensitivities or allergies in relation to MC.. He does listen and is never derogatory. When last I saw him he told me that the aim of GI doctors is to control the diarrhea because MC does not have the same serious consequences as Krohn's or UC. I've learned from this forum that not only do we wish to control the D (duh!) but to also heal as best we each can.
I've recently had good success with a bile acid sequestrant, cholestryamine by Sandoz. I had tried the pill, Colestipol, but it was too large a dose for me and you can't cut the pill. The gas side effect with the pill, which not everyone has, really hit me! Because I have always reacted to most medications, I have found that 1/2 packet of the powder every other day works well for me and I may be able to take it every third day. Time will tell.
It's interesting that the Mayo Clinic microscopic colitis trial is a measurement of fecal bile acids and a bile acid sequestrant.
Susan
My GI doc is a very good guy although he doesn't totally buy into food sensitivities or allergies in relation to MC.. He does listen and is never derogatory. When last I saw him he told me that the aim of GI doctors is to control the diarrhea because MC does not have the same serious consequences as Krohn's or UC. I've learned from this forum that not only do we wish to control the D (duh!) but to also heal as best we each can.
I've recently had good success with a bile acid sequestrant, cholestryamine by Sandoz. I had tried the pill, Colestipol, but it was too large a dose for me and you can't cut the pill. The gas side effect with the pill, which not everyone has, really hit me! Because I have always reacted to most medications, I have found that 1/2 packet of the powder every other day works well for me and I may be able to take it every third day. Time will tell.
It's interesting that the Mayo Clinic microscopic colitis trial is a measurement of fecal bile acids and a bile acid sequestrant.
Susan
The bile acid sequestrant, cholestyramine by Sandoz has to be by prescription. Talk to your doctor.
I continue to have wonderful success with the packets. I only take 1/2 packet every-other morning mixed well in water. I then wait at least four hours to take vitamins and other supplements. Everyday I now have one large, normal stool! I have been able to eat more fiber, too. Not lots but certainly more than I was.
What I've learned is that everyone has to experiment with the dosage they need. If I know that I am going to eat a fatty meal, I may take another 1/2 packet at that time as a precaution.
Susan
I continue to have wonderful success with the packets. I only take 1/2 packet every-other morning mixed well in water. I then wait at least four hours to take vitamins and other supplements. Everyday I now have one large, normal stool! I have been able to eat more fiber, too. Not lots but certainly more than I was.
What I've learned is that everyone has to experiment with the dosage they need. If I know that I am going to eat a fatty meal, I may take another 1/2 packet at that time as a precaution.
Susan
Sorry to not follow up with questions. The digestive enzymes I order off Amazon and are vegetarian. Take one before every meal. Betaine HCl is available at like Whole Foods or vitamin type places. I’m taking 2 with every meal, 3 if it’s crazy protein heavy meal. Again, this has gone down in the past year.
Bless you folks who can take very little cholestyramine...I’ve fiddled with it for 2.5 years and have to take 4.5 packets a day. Mom takes 3 a day. Please don’t think it’s something that works overnight...cause it doesn’t! I think you have to just keep inching up with the stuff to see if it helps.
And honestly people...I eat most things now. Dairy, gluten, soy. And rice! That said...I’m so used to avoiding that stuff...I don’t eat it everyday. I probably will never eat lamb, turkey, elk, sweet potatoes or mushy over cooked veggies again..
I wanted to post this update to give others hope. We are all different and that’s the thing. Entocort was not the miracle drug for me...M & Ms probably would have been as effective.. and diet changes alone weren’t doing it.
At some point you have to go a different direction if what you are trying isn’t working..and that takes guts..but if that’s your only choice then you have nothing to lose.
I quit my job a year ago, sold my house and moved to Arizona! I bought a house down here with my brother..spend time with my mom and have a permanent job with benefits after floating between different hospitals for a year. So life is good and I hope my story helps someone...even if it’s just one person
Bless you folks who can take very little cholestyramine...I’ve fiddled with it for 2.5 years and have to take 4.5 packets a day. Mom takes 3 a day. Please don’t think it’s something that works overnight...cause it doesn’t! I think you have to just keep inching up with the stuff to see if it helps.
And honestly people...I eat most things now. Dairy, gluten, soy. And rice! That said...I’m so used to avoiding that stuff...I don’t eat it everyday. I probably will never eat lamb, turkey, elk, sweet potatoes or mushy over cooked veggies again..
I wanted to post this update to give others hope. We are all different and that’s the thing. Entocort was not the miracle drug for me...M & Ms probably would have been as effective.. and diet changes alone weren’t doing it.
At some point you have to go a different direction if what you are trying isn’t working..and that takes guts..but if that’s your only choice then you have nothing to lose.
I quit my job a year ago, sold my house and moved to Arizona! I bought a house down here with my brother..spend time with my mom and have a permanent job with benefits after floating between different hospitals for a year. So life is good and I hope my story helps someone...even if it’s just one person
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Well said.Laine wrote:At some point you have to go a different direction if what you are trying isn’t working..and that takes guts..but if that’s your only choice then you have nothing to lose.
Thanks for the update.
I have a hunch this (stress relief) has more than a little to do with your stable remission. Thanks for the insight, and best of luck to you.Laine wrote:I quit my job a year ago, sold my house and moved to Arizona! I bought a house down here with my brother..spend time with my mom and have a permanent job with benefits after floating between different hospitals for a year. So life is good and I hope my story helps someone...even if it’s just one person
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.