Shifting perspective on IBS - ScienceNordic article

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LauraAnn
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Post by LauraAnn »

I've been waiting to respond to this thread to see how cholestyramine was going to work for me. I have become a bit "superstitious" about speaking up too soon. It seems that when ever I think all is well MC reminds me it is not! But now after a month of one scoop of cholestyramine at night I am convinced it is realllllly helping. The first night I took it I slept all night without waking for the first time in a very long time. After a month of good sleep and improved energy the bm' s have gradually become more and more normal and I am feeling like my old self again. I have become a big fan of this product. I call it my "magic elixir." 😋

Tex, Gabes and Erica's explanation makes perfect sense to me. I too was at a stand still on getting to a better place and more Normans in my life. This was the little kick I needed to move forward. My weight loss has stopped and food is becoming a little more interesting. I'm still very careful about my diet and supplements--I guess old habits are hard to break!

So thankful to you all for sharing this information. How else would I have known to even try something like this if not for this place? Hope everyone is having good holiday times and that you have a Happy New Year!

🎉🎉🎉🎉🎉
Laura Turner
.........
"There is a crack in everything. That's how the light gets in". - Leonard Cohen. 1934-2016
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Post by deharlz »

Thank you for this article on IBS Erica. I have a pet theory that hopefully these scientists will prove. That it is not 'all in our heads'. I am not normally an anxious, depressed or fearful person. What brought those feelings on was the abnormality of my gut. Having to live with foul smelling gas and urgency can drive a person freaking over the edge. We live in a society that would rather ignore any bodily elimination. Hence bathrooms are a luxury in a lot of instances. The low FODMAP diet has been a godsend for me. Hopefully the medical profession has read this article as well.
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tex
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Post by tex »

Laura,

Thanks for the great update. I hope it continues to work for you and the New Year will bring smooth sailing.

Tex
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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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Post by Gabes-Apg »

Fantastic news Laura!!!

that is a great way to start 2017.

hope the wellness and improvements keep happening
Gabes Ryan

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Post by EUROPEU »

Hello I´m new at the forum, but I have been reading lots of posts here before register in and find it realy useful and want to give thanks to everyone here for all the information you give.

I´m 66, and was diagnosed LC. 8 months ago after a colonoscopy. I was put on mesalazine with no good results, then on Entocord for two months, relapsing eight days after I stopped taking the pills. A month ago, according what I had seen in the forum I tried cholestyramine and after finding the right dose for me, 2,5 grs a day, before breakfast, I´m ok (1or two solid BM a day) and next month I´ll try to taper the dose to 2 grs.a day. I think that is good to take cholestyramine same time every day, if I don´t ,some days I have had more BM.

Today I have seen my Doctor.He doesn´t know too much about LC, but he has told me to continue for two months with cholestyramine , since it is working so well for me.

My diet is chicken,turkey,fish,pork,rabbit,carrots,cauliflowers.potatoes,sweet potatoes,GF bread, honey, bananas,avocado, GF noodles ,rice and eggs.
I´m not allergic to Gluten, Lactose nor Frutose accordingly to my blood tests.

I would appreciate someone here answered the following questions :

In case of a travell , do you think it would be good to double the amount of cholesteramine I take dayly.Would it be safer?
Can I introduce hard cheese and yogurt to check if I am intolerant to casein and lactose as proposed in the elimination diet?
Do you think that cholestyramine can hide bad effects of eggs, cheese or yogurt, interfering with my healing process?

I would appreciate any commentary to this post.

Sorry for my bad English, I have not written nor spoken it for 40 years.

Thanks again, queridos amigos
:grin:
EUROPEU
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tex
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Post by tex »

Hello EUROPEU,

Welcome to our Internet family. Your diet appears to be well-designed, and your recovery seems to be going well.

To answer your question about cholestyramine, I would continue to use the dose that you have found to be the most effective, even for travel. Too much cholestyramine can cause cramps and constipation or other unpleasant side effects. You may be able to eventually wean off the colestyramine, or it might be necessary to continue to take it in order to maintain remission. Whether you may continue to need it depends on the exact cause of symptoms. And the cause of symptoms is typically difficult to determine, but if your symptoms begin to return when you try to wean off the colestyramine, then your body is telling you that it needs the medication in order to remain in remission, at least for a while longer.

There's no published research (that I'm aware of) about whether cholestyramine can mask the symptoms of a sensitivity to eggs or dairy products, but my best guess is that it probably is not capable of masking or hiding those sensitivities. However, cholestyramine can interfere with healing by preventing the absorption of important nutrients needed for healing by the immune system, such as vitamin D and magnesium. If you are very careful to take the cholestyramine 4 hours apart from meals (or supplements), then those effects should not be a serious problem. But you will probably need to take vitamin D and magnesium supplements in order to prevent the development of severe deficiencies. Most of us here are deficient in vitamin D and magnesium, even though we are not taking cholestyramine. Those deficiencies are a side effect of the disease, caused by the malabsorption problems associated with the intestinal inflammation that causes the disease.

Incidentally, the book Microscopic Colitis (Colitis Microscópica) is now available in Spanish, if you have not already read it, or if you know of anyone who might be helped by reading it. It's also available in digital form.

https://www.amazon.es/Colitis-Microscop ... 985977264/

Incidentally, your English is very good.

Again, welcome to the forum. I hope that some of this is helpful.

Eres muy Bienvenido,

Tex
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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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Post by Gabes-Apg »

welcome Europeu

glad you joined and you are posting (and your english is very good )

Regarding your diet and your question
Can I introduce hard cheese and yogurt to check if I am intolerant to casein and lactose as proposed in the elimination diet?
I would hold off for now, dairy is inflammatory to everybody. and that amount of inflammation from the dairy, will make reactions to other foods more intense.
Are you taking Vit D3 and magnesium?
My diet is chicken,turkey,fish,pork,rabbit,carrots,cauliflowers.potatoes,sweet potatoes,GF bread, honey, bananas,avocado, GF noodles ,rice and eggs.
my only suggestion re this is not too much GF bread (processed flours can be an issues in the early stages of healing)
and only have small amounts of honey, too much sugar can also be an issue.
what types of drinks are you having?
Gabes Ryan

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Post by Erica P-G »

Update...

It takes about 6-7 days now only taking cholestyramine at night for some bristol symptoms of 6 to return....so back to the drawing board and I will keep continuing the binder - I started the binder early August 2016 ...it appears it takes a couple more days for me to react again since the last testing so I am healing....it's just going to take a good spell longer before I test myself again (I know I said I'd wait 6 months beyond December before testing again, but after visiting the NTP I gave it a try to get another baseline :wink: My NTP is still learning all about this cholestyramine thing, I think she would like to see me in a more natural healing state....but sometimes healing goes at its own pace.
:grin:
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Dx LC April 2012 had symptoms since Aug 2007
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Post by Gabes-Apg »

but sometimes healing goes at its own pace.
Erica
this is not directly MC related, but it is a great example of how long healing can take for some
based on my reading and research of the past 5 years or so, I am very certain i was born with;
- nutrient deficiencies
- methylation issues
- bad gut issues (bacteria etc along with birth defects)
- excess toxins/heavy metals

through the journey of a stressful life, the nutrient deficiencies got worse and the toxins and heavy metal load got worse.
to the extent that I was severly deficient in not just in Vit D3 and magnesium, but in my case Zinc and B6 - to the extent that i never menstruated as a teenager.
Mainstream medicine for this was to put me on contraceptives at age 18.
at various time in my adult life (before MC dx at age 40) I tried various treatments and approaches to resolve the hormone issues - no luck, i never had functioning cycle. best I could achieve was spotting once every 6 months, sometimes up to 18 months.

with the confirmation of Pyrrole, and the research of zinc and B6 deficiency, i have been on very high doses for almost 3 years along with fixing methylation cycle, fixing magnesium deficiency, and clearing the excess toxins and heavy metals, minimising exposure to triggers, regular treatments

long story short - at age 47 for the first time in my life i am having a near normal cycle, every 30 days or so for the past 4 months.
to be realistic, only with the MC Dx just over 7 years ago did I start working on healthy gut, clearing toxins, lowering inflammation.
I had been struggling with wellness for over 10 years.
(keeping in mind I was on minimal gluten, lactose and processed foods for 9 years BEFORE my MC dx)

for some of us - healing and attaining wellness takes a shite load of time! there is no way to fast track it
and it took a huge amount of elements and inputs to make this happen;
healing the gut, fixing dental issues, sticking with the bland eating plan, right supps at right time, various tests to fill in the gaps of the puzzle
lifestyle changes, blind faith etc

in the last 10 years I have changed jobs 5 times, moved house 8 times, (one of these was major interstate move), was made redundant, and so sick I spent 12 months not working and on temporary welfare. its been a tough gig at times. I am still only well enough to work about 20 hours or so a week.
I share this as a reminder to hang in there, be patient and have faith that the body is healing XO
Gabes Ryan

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Erica P-G
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Post by Erica P-G »

Wow Gabes...such an incredible journey!

Thank you for sharing :smile: Yes everyone's journeys are unique to each and everyone of us. I didn't understand that concept right at the beginning because I had a perception that this MC was something that fit into a box....I now know that each of us are like a snow flake and never shall two people experience this quite the same, similar perhaps but never the same :wink:

I'm so glad to hear that your life journey has better stability in it, I feel as humans experiencing things stability can be such a winning feeling.

Big Hugs to you, I certainly enjoy your visits and statements about things :grin:
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Post by EUROPEU »

Tex, Gabes

First of all, thank you for your warm welcome.

I will take your advice. I´m getting the book right now.
I´m already taking Vit D3 and Magnesium Glycinate. I only drink mineral water and Chamomile.
I´ll let you know how I´am doing with Cholestyramine.

I´m so grateful to you for all your help.
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Post by Gabes-Apg »

Europeu
how much Vit D3 and magnesium are you taking?
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Post by Erica P-G »

Welcome EUROPEU :smile:

I have to say that I do not believe cholestyramine is masking or covering up any reactions to proteins. I have been on the cholest for almost 6 months now and the only thing I notice is that I need a bit more elemental magnesium than before I started taking it, so I take 100mg with breakfast and also more external at that point, and a I try to get some Remag internal in the afternoon.

I take the cholestyramine 1.5 hours after breakfast in the morning and about 3 hours after dinner in the evening. This protocol seems to work for me.

Your foods are right in line so keep at it! I take 10,000 vitD3 and try to get around 500-700mg magnesium a day.

You're doing great!
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Post by EUROPEU »

Hi, Gabes
Thanks for your commentaries .
I take magnesium glycinate 302 mg a day and Vit D3 5000 IU 125 ug a day.
One year ago mi level of Vit D was 25,8 ng/ml, now it is 37,10 ng/ml after two months of taking the supplement.
Do you think I am doing well? Should I increase the intake of mag. and vit D ?
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Post by EUROPEU »

Hello, Erica, thanks for your commentaries

I´m great withcholestyramine, the only thing that I´am worried about is gas.
I have a lot. Is anything I can do to reduce the amount of gas ?. Perhaps it is because I take too much or too little cholestyramine?.I take 2,5 grs a day.
Do you think gas will desappear in a matter of time?
How did you notice you needed more magnesium?

Too many questions? Sorry
As you are on cholest for six months you are kind of expert, I have still  to learn a lot about it.


Thanks a lot
EUROPEU
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