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

Polly · Post by **Polly** » Sun Aug 16, 2015 7:37 am

Hi Friends,

As you know, I have become increasingly interested in the role that bile acids play in our disease. Some estimates are that at least 1 in 100 have bile acid diarrhea, with up to 40% of MCers having it and at least a third of those diagnosed with IBS. Those are big numbers!

It is thought that Bile Acid Diarrhea (BAD) results from a deficiency of a fibroblast growth factor (FGF 19), whose role is to help reabsorb bile acids in the terminal ileum. When this deficiency occurs and less bile acid is resorbed, too much bile acid then goes into the colon, irritating/inflaming it (colitis) so that it can't properly remove excess water and causing increased motility.....with the result being diarrhea.

Researchers are working on a drug (obeticholic acid) to increase FGF - see below:

http://medicalxpress.com/news/2014-10-c ... rrhea.html

Also note at the end of the article the relationship between bile acids and gut microbia. This is interesting, since the reason for "colitis" in the first place is an altered gut microbiome (according to Dr. Fine). Also, note the reference to cortisol's role in bile acid metabolism. This is interesting, since we know that stress depletes cortisol (from the adrenal gland) and certainly makes MC worse.

It seems to me that we may be getting closer to an understanding of the etiology of MC, which can only help lead to more effective treatments.

Polly

Erica P-G · Post by **Erica P-G** » Sun Aug 16, 2015 10:44 am

Hi Polly,
I posted a bit earlier a moment ago before I read this....could it be that even after making proper diet changes (for lets say the last 90 days) seeing some positive change but then within the last couple weeks a digress of changes and seeing more yellow in the toilet, back to 6-7 Bristol scale from a 5 (that didn't last nearly as long as I'd hoped) that I could potentially be dealing with a lowered FGF-19?

Would my Dr. grade probiotic help at this point? Or perhaps increased external Magnesium (I think I need to back off the internal kinds for a few days to see if I am reacting to more in the gut than it can handle).

How do we help the liver produce better FGF-19?

Thanks for this insight :-)
Erica

dfpowell · Post by **dfpowell** » Sun Aug 16, 2015 6:28 pm

Polly,

Thank you for this interesting research information on BAD. I used the research articles from your original post "A New Way to Look at MC" to talk with the PCP about trying the medication. I also noticed on the Mayo Clinic website they recommend it as a medication to use for MC.

I have benefited greatly since starting the medication 3 weeks ago. I have had normans since the second day, I started on 2 doses/day and now take 1 1/2 doses/day, so I have been able to decrease it slightly.

Polly · Post by **Polly** » Sun Aug 16, 2015 9:21 pm

Hi Erica,

You could be certainly be dealing with an FGF 19 deficiency. Unfortunately, at the present time, I don't think there are any readily available meds to increase the FGF 19. The best way to manage BAD is to use cholestyramine......if you respond to it, then you will know that you have BAD. It is a safe and relatively cheap med. Not sure about the probiotics....they have never done much for me, but my GI doc now recommends them......but only once the gut has responded some to diet/Pepto/cholestyramine. If you are regressing, it might be best to wait until you have seen some improvement. Yes, I would be careful with any oral magnesium during a set-back. Have you checked out the low FODMAPS diet? I have found it to be helpful.

I hope things turn around soon.

Donna,

Great news about your success with cholestyramine! I am finding that I need the same amount as you.....1 1/2 packets/day. Do you mind it? Apparently some people find it distasteful (it is a little "gritty"), but it doesn't bother me at all. I like the citrus flavor and don't need to put it in juice.... I just mix it in a few oz. of water.

Polly

Erica P-G · Post by **Erica P-G** » Mon Aug 17, 2015 10:57 am

Thanks Polly,

I'm taking this week and experimenting with no supps, only external Mag and spray D3 with some sun hopefully if all this smoke in our state will lift (Washington).

cheers
Erica

dfpowell · Post by **dfpowell** » Mon Aug 17, 2015 1:27 pm

Polly,

I don't mind the cholestyramine, I am using the Sandoz citrus flavor and shaking it in a small jar, which helps put it into suspension, then I don't notice the grittiness.

DebE13 · Post by **DebE13** » Tue Aug 18, 2015 4:50 pm

I have my annual visit in a couple weeks and plan to ask if I can try it again. I took it when I was first dx and it didn't help. Is it worth trying again now that I have a more limited diet? Will they allow me to continue with entocort? I tracked it so they have a better idea of what I'm actually taking and it's about 6-8 pills a month. Without it I have issues at night.

dfpowell · Post by **dfpowell** » Tue Aug 18, 2015 5:52 pm

Deb,

It could be worth a try, you will need to take your meds and supplement at a separate time. I am not sure how it would work with Entocort, but cholestyramine is easy to stop if it doesn't work. I have been taking my thyroid meds and supplements in the morning and cholestyramine at noon and every other day at dinner. I started out with 2 doses/day and have been able to decrease to an average of 1 1/2 doses/day. I shake it in a small jar and find that this helps decrease the grittiness. I found information on the internet that people prefer the effectiveness of the Sandoz brand vs Par, which I started with and switched to Sandoz the next month. If cost is an issue, the cans are less expensive than the packets.

DebE13 · Post by **DebE13** » Tue Aug 18, 2015 6:42 pm

I didn't think sbout the timimg. I take my thyroid meds at 7am and my second dose of T3 at 1pm. Coordinating with eating and other meds will be challenging. I take my Vit D, proferrin, magnesium, and B vitamins with dinner.

My son used to take the sandoz brand. I don't particularly care for it but would be willing to take anything if it actually helped. :) i do remember stomache aches when taking it but maybe that was food related since I ate anything and everything at that time. Fortunately, my health insurance is very good. Only one way to find out.......

Polly · Post by **Polly** » Wed Aug 19, 2015 7:45 am

Deb,

It's worth a try, IMHO. What was your experience when you tried it before? It can take up to several weeks to see the results. Also, it takes a while to "titrate" it - i.e find the right dose. They recommend taking other meds either one hour before or 4 hours after the cholestyramine so that absorption is not a problem. You might start by taking the cholestyramine in the evening - either after dinner or before bed. (It can be mixed with applesauce if you don't like the gritty drink). Some find that the evening timing helps with the "morning rush". After a few days, you can add another dose during the day if you haven't yet seen an improvement. Good luck.

Polly

DebE13 · Post by **DebE13** » Wed Aug 19, 2015 5:44 pm

It was one of the first meds tgey tried when I was dx in 2007 so it's been a while. I don't recall it made any difference. Nothing I've tried really has. It's been so long now it's become one long blur of never ending D. After reading your post it made me think just because it didn't work the first time around doesn't mean it may not work now. So much about my health has changed.

Thanks for the evening suggestion. That would be an ideal time for me. I wonder if it would help tame my immediate need to use the toilet as soon as I wake up. It's dangerous to linger in bed after I start to wake. I also tend to see oils/grease floating with the D. Maybe it would help that too?

I would gladly drink grit if laid out the welcome mat for Norman or anything close to it!

Joefnh · Post by **Joefnh** » Wed Aug 19, 2015 8:18 pm

Hmmm Polly I wish I read this post earlier.

As some of you know I just had a 2 month adventure in the hospital where my : is now a ; Sorry I could not resist. I'll go into details in another post but basically I had a colectomy with the removal of the sigmoid colon now making my colon a semi-colon.

During the hospital stay I had a lot of testing on just about every part of the digestive system. One of the tests used live MRI imaging to watch my digestive tract at work, One comment came up about 3 times is that I produce a significant amount of bile,when that was stimulated.

The premis that the bile may result in inflammation also is supported by the positive response to Entocort by many MC sufferers. I wonder if there is a way to test for this condition.

Polly do certain foods cause more or less bile to be released?

DebE13 · Post by **DebE13** » Thu Sep 03, 2015 5:06 pm

I met with the nurse and she actually suggestion trying the colestipol (in pill form) before I had a chance to ask her about it. She agreed that it would be worth a try even if it hadn't previously worked. She wants me to take it twice a day. The before bed 9pm will be easy but I'm struggling with the other time. I just had thyroid labs today to see how I am responding to the cytomel (generic) 2 times a day. My endo was opposed to this but allowed it. I'm a bit nervous about what my numbers will be. I feel less brain fog now so that is progress.

So my question is: can I take my 1st dose of colestipol at dinner time- 5 pm and the second at 9pm?

I know it's not ideal but I don't want to screw around with my thyroid meds. Eating, not eating with them is a bit tricky. I get up at 4:30 am and have to be to work at 6 am. I eat a light breakfast around 5 am so I can use the bathroom 4-5 times BEFORE I leave for work. Most the time I'm not hungry but will get the shakes and mighty crabby if I wait til break to eat. I take my synthroid and cytomel (both generics screened for gluten, dyes, and other fillers that may be problematic) at 7 AM and eat a piece of fruit and a Lara bar at 9 am. I eat lunch at noon and at 1 pm take my second dose of cytomel. I eat dinner around 4:30-5 pm and take all my supplements with dinner. That includes vit D, magnesium, B12, and iron. The colestipol will fit in before bed but where does the second dose fit in?

I asked the pharmacist and she shrugged her shoulders and told me to call my GI.

dfpowell · Post by **dfpowell** » Thu Sep 03, 2015 6:38 pm

Deb,

Could you take your supplements at 9 am with your Larabar or noon with your lunch?

I take my cholestyramine between 12-1 pm and 5-6 pm, so not much of a difference in the time range that you are looking at taking your meds.
I take my supplements in the morning with my breakfast so the cholestyramine will not bind them.
I hope you see some improvement, keep us posted.

Jonas · Post by **Jonas** » Fri Sep 04, 2015 1:42 am

I read about cholestyramine on "swedish fass" that all swedish doctors use.

Be especially careful with Questran

- If you have inflammatory bowel disease.

- The very long-term treatment because it may decrease the absorption of fat-soluble vitamins and vitamin K can increase the tendency to bleed. Vitamins A , D, and K may in some cases need to be given prevention.

- If you have constipation.

Is this safe to take if you have MC?