More on Bile Acids (an important piece of the MC puzzle?)

crervin · Post by **crervin** » Sun Sep 13, 2015 10:02 am

Good info Tor! That is promising! Actually I am hungry, right now while I feel nausea. Maybe I just need to make sure I have keep a full stomach! I worry about the vitamin issue as well. My top priority is remission right now though. Thank you again!

Polly · Post by **Polly** » Mon Sep 14, 2015 8:31 am

Hi Martha,

I noted in another thread that I have not had nausea with cholestyramine. Your point about feeling queasy as the bowels start to work normally again is interesting. I think that is possible, especially when going from a long period of watery D to firm stools. I always wonder if the colon has forgotten how to work and maybe needs some start-up time again. Also, as I noted on another thread here, do not give up, even if you continue to have nausea. There are a number of similar preps that you can try that may be fine for you.

Polly

Kari · Post by **Kari** » Fri Sep 25, 2015 3:39 pm

I have been following this discussion with great interest, as I've tried just about everything to "normalize" my stools. I have been dealing with colitis for 15 years, and a little over 5 years ago figured out the diet angle. I have stabilized my condition to some extent with diet alone and occasional imodium, but Norman remains illusive. I took my first dose of Cholestyramine this morning, and have felt slightly nauseous ever since, but that will not stop me from continuing. I will update here on my progress.

Polly and Tex - thanks for your relentless search for answers to explain and control this frustrating disease.

Love,
Kari

dfpowell · Post by **dfpowell** » Fri Sep 25, 2015 4:14 pm

Kari,

Yes keep us posted on your experience with cholestyramine. I have been on it for 2 months, and still doing well. I take 1 scoop 2x/day and last week I tried lowering my dose by decreasing the amount I take each time. After several days I started experiencing more gas and loose stools, so I increased back to the full dose and my gut went back to normal. I find that I still get some gurgling and I have added psyllium husk powder which seems to quiet my gut down. I have not experienced any nausea, hope that gets better for you. I know we are all different, but just thought I would share my experiences.

Post by **tex** » Fri Sep 25, 2015 8:13 pm

Good luck Kari,

I certainly hope that this turns out to be the final key to your solution.

Love,
Tex

Polly · Post by **Polly** » Fri Sep 25, 2015 9:12 pm

Kari!!!

Nothing ventured, nothing gained. Keeping fingers crossed that this may be a piece of the puzzle for you. It took several weeks for my gut to settle down, altho I never experienced any serious nausea or gas. After a number of weeks now (taking the same dose as Donna) it feels quite settled. Are you taking it with a meal? I would recommend that if you aren't.

Good luck, and I will be following your updates with great interest.

Love,

Polly

Kari · Post by **Kari** » Sun Sep 27, 2015 8:39 am

Donna, Polly and Tex - thank you for your encouragement. I'd like to write a more detailed update, but I'm in a rush to get out the door, heading to the mountains for a couple of days. I will know more when I get back, so will update then.

The nausea is almost gone - thank you for the hint about taking it with meals Polly - it has helped. At this point in time, I'm cautiously optimistic

.

Love,
Kari

mzh · Post by **mzh** » Thu Oct 01, 2015 5:46 pm

tex wrote:Ok, I'm going to make a wild guess here, and guess that those who have bile acid malabsorption have type A, B, or AB blood.

And my second guess it that my first guess is wrong (but if if the first one happens to be correct, that opens the door to an interesting possibility).

Tex

Yes, I am AB or B! I am now on Welchol, Entocort, and LDN and am getting better by the day. I had terrible setback in September because I couldn't take LDN during knee surgery recovery and I actually forgot about Entocort. The LDN kept me off Entocort for 14 months! My bowels were perfect that long! Even better, my GI doc is VERY interested in LDN. He said just today that he is desperate to find a way to get people better because the standard methods just aren't working. I'm stunned; I figured he'd blow it off like most other docs do. No - there's hope!

Tex, your and Polly's posts are incredible. What great minds you have!

crervin · Post by **crervin** » Thu Oct 01, 2015 8:18 pm

Just curious are you also avoiding gluten? Also I'm not familiar with LDN, is that something you will have to always take?

Thank you

mzh · Post by **mzh** » Fri Oct 02, 2015 5:56 am

crervin wrote:Just curious are you also avoiding gluten? Also I'm not familiar with LDN, is that something you will have to always take?

Thank you

I do avoid gluten but do have a beer once in a while or a piece of pizza, for example. But when I do that I use a digestive supplement that is specifically made to digest the gluten. It works very well.

Yes, I will apparently have to take the LDN forever because when I stopped it for 3 weeks when I had a knee replacement I had a terrible MC flare. Never again.

The name of the supplement is Gluten Enzyme DG (BioCore DPP IV) by Vitacost.

Polly · Post by **Polly** » Fri Oct 02, 2015 8:04 am

Good morning All!

It seems that there are at least 4 of us who are having good results with a bile acid sequestrant (Donna, Tor, mzh, and me). And the jury is still out with Martha and Kari (and maybe Deb E). I do believe that bile acid diarrhea (BAD) is much more common than we realize and especially in those who have more difficulty achieving remission. Tex and I are talking about adding some info on BAD to the newbie's forum.

Thanks for the kind words, mzh, about Tex's and my brain! Tex and I are always searching for new knowledge, but I think something unique that he and I have in common is an interest in trying to make associations/relationships between the pieces of info we find. It means we can probably be laughably off base at times, but it also means we can hit pay dirt too! LOL. That's super that you have had such success with the LDN!

I am still finding success with the cholestyramine! Yay! I have noticed that I am able to eat some foods that I wasn't able to before starting it, especially foods with a lot of fiber, like nuts and beans even. I have also had hard cheese on a number of occasions recently without any problem (of course, I realize that after many years of avoiding dairy, it will take a while for the antibodies to build up).

Polly

crervin · Post by **crervin** » Fri Oct 02, 2015 12:14 pm

Polly,
So glad to hear you are still doing well. I will let you know in a week or two. I started welchol 2 days ago.

I am having histamine issues currently. Headed to the beach so hoping that helps. I still feel like that is my main problem (among several) and hoping it doesn't keep me from remission.

You take care!

Polly · Post by **Polly** » Fri Oct 02, 2015 9:24 pm

Martha,

Good luck! Will look forward to your updates.

Polly

robinc2525 · Post by **robinc2525** » Fri Oct 02, 2015 10:41 pm

Hi Polly, count me in on your list of people who filled in the missing piece of their puzzle by using cholestyramine. After reading your first post about sequestrants I asked my doc for a prescription and I am very happy with how well I do on it. It has helped me more than any medication I have tried (Uceris, Lialda, Apriso). I am working hard to figure out the "why" though, as in what causes the BAM to begin with. I have tested positive and been trying to get rid of SIBO since this can be one cause of BAM. Supposedly when the SIBO is gone my terminal ileum will heal and the BAM may go away. I am not sure if that will happen though, since I just finished 2 weeks of an Elemental Diet and the BAM got worse during that time. My gut is telling me it's a separate issue but we'll see. Anyway, thanks so much for that initial post. I had read about sequestrants in the past and wanted to try them but didn't think my doc would agree. You gave me the push I needed and the link to MC to follow up on it!

Robin

Polly · Post by **Polly** » Sat Oct 03, 2015 2:59 pm

Hey, Robin!

So you are another "BAMMER"....welcome to the club! Glad to hear that sequestrants are helping you, too.

I welcome any ideas you might have as to the "why" of BAM. That question also intrigues me. According to that original article I posted on BAM, the majority of people who have it have no underlying identifiable reason. (A large number of them have been diagnosed with IBS). Of course, there is a problem somewhere (even if it's at the cellular level), but we just aren't able to pinpoint it yet. It does seem to me that something must be negatively affecting the terminal ileum and preventing it from absorbing bile acids properly. In your case, it may be the SIBO, but maybe not as you said. Interesting that the BAM worsened on the elemental diet. Any idea why? My last B 12 test showed a value at the lowest end of normal. (Of course, B 12 is absorbed in the terminal ileum).

Have you noticed that you have been able to eat more of your sensitive foods while on it? I will not eat gluten, but I have tried some other foods with success. I have been thinking that it would be a good thing to get more variety in my diet after so many years of food restrictions. I worry that I have greatly reduced the variety in my gut biome because of limited diet.

I'll be interested in your updates.

Polly