Been a Tough Summer - Still Struggling

[Pam V]

Hi All,
After enjoying several years of remission, I reached out to you in the Spring as I was having a hard time getting a flare under control. With the advice of you all, I tried doing the Pepto regimen but it seemed like when I was taking a lot of Pepto, I was getting really itchy feeling at night. When I tapered off the Pepto (had been doing it for about 10 days, things seemed a bit better). That was pretty much my summer - "mostly better". I kept Imodium on hand when needed. For about the past month or so though, most mornings I wake up to sludge. There have been a few close calls as well. Imodium is a daily ritual (taking 2 most mornings, which typically keeps things in control until the next AM). I tried restricting my diet to the very basics for awhile (bone broth, banana) - I gave up my morning coffee with almond milk and have been drinking plain green tea and lots of water. My weight dropped down about 8 -10 lbs. to my junior high school weight of 112 lbs. I started eating foods that have been "safe" in an effort to get my weight up and get some nutrients as well. Just ground turkey, salmon, ground beef, rice, plain red or yellow potatoes (no vegan butter). I'm still dealing with morning sludge (at best), and watery stuff other times. I'm due for a colonoscopy in late September, which I am dreading. My GI makes me very nervous - kind of odd, I've been thinking about possibly reaching out to her for another round of Budesonide. Your thoughts? Can you take Imodium and Pepto at the same time? The think with the Pepto routine - it didn't stop me from having to go the way Imodium does. Also to top it all off, my GP has strongly encouraged me to start taking Risedronate Sodium for osteoporosis. I've been putting osteoporosis drugs off for a long time but I promised him that I would start after another bone density test showed further thinning of my bones. I appreciate any input/suggestions that you might have. Thank you so much.

[tex]

Hi Pam,

Sorry to see that you're having problems. I can't keep up with various treatments that everyone has tried, so I don't remember if you've tried treating BAM, in case that's the problem. Trying it early on in your treatment right after diagnosis, doesn't count, because unless you've been on the diet long enough, treating BAM with bile acid sequestrants won't work, for most of us.

I've written an article describing how to treat difficult cases of MC that don't respond to conventional treatment, and it will probably appear in a future newsletter published by the Microscopic Colitis Foundation. But at the moment, I have no idea when it will be published, so here's a quote from The article regarding treating BAM, in case that might be helpful:

If everything else checks out, consider BAM.
If nothing suspicious can be tracked down, after carefully considering everything that goes into our mouth, or on our skin, and we don't currently have any major stress issues, it may be time to consider another possibility, namely, bile acid malabsorption (BAM). Published research shows that in a trial involving 27 collagenous colitis patients who were refractive to conventional treatment, 78% of them achieved prompt remission after they were treated with a bile acid sequestrant (Ung, Gillberg, Kilander, and Abrahamsson, 2000).8

And now, there's a simple blood test to detect BAM.
Until now, doctors have had no medical diagnostic test capable of detecting diarrhea due to bile acid malabsorption. Now, however, researchers at the University of Copenhagen, in Denmark, have developed a blood test that will detect BAM (Lewinska, et al., 2023).9 They refer to the issue as bile acid diarrhea (BAD), but it's the same problem that we refer to as BAM.

Why not treat BAM initially?
The reason we don't recommend attempting to treat BAM initially (for MC patients), as some gastroenterologists attempt to do, is because unless gluten has been avoided for six or eight weeks, in order to allow the antigliadin antibody level to decline to levels below the threshold at which a reaction is triggered, treating BAM prematurely, in most cases, will not be successful, because the immune system will be dominated by the antigliadin antibodies, so that it continues to react against them. But after 6 to 8 weeks of faithfully following a gluten-free diet, gluten should no longer be dominating the immune system, so if no improvements in diarrhea symptoms are noted, then there is a very good chance that treating BAM will bring remission (assuming that BAM is the issue preventing remission).

Treating BAM is not always easy.
Although BAM sometimes responds to the labeled dose recommended on the bile acid sequestrant
that our doctor prescribes, in many cases (probably most cases) the ideal dose will have to be determined experimentally, by trial and error. Too much will cause cramps and constipation, and too little, will not resolve the diarrhea. It takes approximately two weeks for the effects of an adjusted dose of bile acid sequestrant to completely stabilize, but estimates of how well the dose is going to work can usually be seen sooner than that. An ineffective, or partially effective dose is usually too small, and by continuing to experiment with the dose, we can eventually find a dose that controls our diarrhea to our satisfaction.

For the worst cases of BAM, a specific brand may be required.
Many of the members of our discussion and support forum who need to use a bile acid sequestrant, seem to have the best results using a cholestyramine product that was originally sold under the brand name Sandoz, and is now branded Epic. Apparently, Epic was manufacturing these products for Sandoz, prior to the name change. For anyone who might need to seek out these particular products, they are:

42806-266-95 Orange 60 USP packets
42806-267-97 Orange Can
42806-270-95 Light Orange 60 USP packets
42806-271–97 Light Orange Can

Typically, those who are unable to successfully find a dose of cholestyramine that will resolve BAM, either haven't waited long enough for their antigliadin antibody level to decline sufficiently before attempting to treat BAM, or the dose of bile acid sequestrant they are using is insufficient. As many as eight packets, or the equivalent dose, may be required in severe cases (thanks to Laine for that tip).

Ignore label recommendations to take bile acid sequestrants with meals.
Use of a bile acid sequestrant carries a relatively low risk of any adverse outcomes.. When bile acid sequestrants are prescribed in order to lower cholesterol levels, they are recommended to be taken with meals. However, when using bile acid sequestrants to treat BAM, that rule should be ignored.

Nutrient malabsorption is already a problem with either active MC, or diarrhea caused by BAM, and bile acid sequestrants will only further reduce the absorption of nutrients. So we definitely don't want to take bile acid sequestrants with meals (unless we're also trying to treat high cholesterol levels). Since bile acid sequestrants also tend to significantly reduce the effectiveness of certain medications, and they tend to prevent the normal absorption of folic acid, and fat soluble vitamins, such as A, D, E, and K, we need to be careful about the timing of when we take a bile acid sequestrant.
In order to minimize the risk of losing nutrients or deactivating medications, bile acid sequestrants should either be taken at least 4 to 6 hours before eating or taking any medications or supplements; or at least an hour or two after eating, or taking medications or supplements. If it becomes necessary to bend those rules a little, that shouldn't cause any major problems, we just won't get optimal results.

What if treating BAM still doesn't bring remission?
Although we may be faced with less desirable options, we still have an ace-in-the-hole that can usually be used to bring remission in even the most persistent cases. Since it's impossible to verify that in refractive cases, every option described above has not been meticulously applied, and something has been overlooked, we can't assume that these failures to reach remission are due to human error. And we're well aware that there are exceptions to every rule. Therefore, we certainly can't rule out the possibility that although the vast majority of us are able to successfully use diet changes to control our MC, there may be a very small percentage of MC patients for whom diet changes alone, will not bring remission.
Low dose budesonide can be safely used to maintain remission.

In cases where every attempt to reach remission has failed, if budesonide can be used to bring remission (while maintaining a safe diet), but remission cannot be maintained when the budesonide treatment is completely stopped, it may be necessary to use a low maintenance dose of budesonide (in combination with a safe diet), in order to maintain control of the disease over the long term. In such situations, some of our discussion forum members have been able to successfully use a dose somewhere between one 3 mg capsule per day, and one 3 mg capsule every sixth or seventh day. Published medical research proves that long-term use of budesonide at these low dosages will not lead to any significant adverse effects, in most cases.

Here are references number 8 and 9 from the above quote:

8 Ung, K.-A., Gillberg, R., Kilander, A., and Abrahamsson, H. (2000). Role of bile acids and bile acid binding agents in patients with collagenous colitis. Gut, 46(2), pp 170–175. Retrieved from https://gut.bmj.com/content/46/2/170.full

9 Lewinska, M., Kårhus, M. L., Ellegaard, A-M. G., Romero-Gómez, M., Macias, R. I. R., Anderson, J. B., . . . Knop, F. K. (2023). Serum lipidome unravels a diagnostic potential in bile acid diarrhoea. Gut, Published Online First. Retrieved from https://gut.bmj.com/content/early/2023/ ... 022-329213


I hope this helps,

Tex

[Pam V]

Thank you, Tex - I'm trying to hold off on meeting with my GI but will discuss with her when I see her in September. I also re-read a lot of the info on here about Stage 1 diet and I am going to focus on eating protein with smaller amounts of white rice, red potato, overcooked green beans. Summer vegetables are the best so I have been eating whatever I make for the family (sauteed zucchini/summer squash/onion, roasted brussels sprouts with garlic, fresh corn). When things are going well, I don't have problems with those vegetables but maybe I need to step away even though I will miss out on local produce.

I greatly appreciate your help and the help from this forum. I relied on this group heavily when I was first diagnosed in 2017 and do not think I would have reached remission without your help. So a big thank you to you and this forum!

Best wishes ~
Pam

[HockeyMom]

Interesting about the blood test Tex. I wonder when it will be available in the US. I currently live with my brother who has diarrhea issues but doesn't really want to try cholestyramine. If and when it gets bad enough, I guess he will do something about it!

I only wish it was available in capsule form. Having to drink like 12 ounces of fluid an hour and a half after a meal becomes problematic sometimes. Pain in the rear with my trip to Sweden this summer! Because then an hour after that you are looking for a bathroom to pee!

I take mine typically 1.5 hours after a meal to try and let my body absorb things! Seems to work for me.

Laine

[tex]

Good question. I assumed it might be available by sometime this fall, but I just now did a search, and I can't find any predictions for when it might be available in the U.S. It was originally announced in early July. Here's a link to one of the medical news sites where it was mentioned:

https://www.news-medical.net/news/20230 ... rrhea.aspx

And there's a link to the original research article (published in Gut) at the bottom of the News Medical article.

https://gut.bmj.com/content/72/9/1698

Tex