FROM CHOLESTYRAMINE TO BUDESONIDE!

[Cmarlene]

I’ve always thought I had IBS and had mild flair-ups over the years. However, end of March I thought it was a normal one…take one Imodium as usual and next day would be a normal day. Didn’t happen. From then on it just kept getting worse. Up to as many as 7 or 8 WD and urgency even with Imodium which was not working much for me. Won’t go into all the stuff I tried over the next five months and how without any guidance from my Nurse Practitioner, and a colonoscopy referral maybe years away, I was feeling lost and didn’t know where to turn.
Yes, this is Canada and our healthcare system is in crises. Finally, mid-August I travelled to Montreal and got a colonoscopy at a private clinic. Results were BAM and some biopsies which revealed Lymphocytic Colitis. First, before getting the results of the colitis, I was prescribed Cholestyramine. After the first week it didn’t seem to be working that well so I increased my one powder dosage to two. It’s now been almost a month on it and it’s working great. One normal movement in the morning and no pain, bloat or urgency all day. I had lost about 15 pounds over the five months but was now regaining energy and a better appetite, still no or not much weight gain, but it’s only been a month on the medication. Gaining weight takes time.
About two weeks ago now, I got the results of the biopsies and was told to abandon the Cholestyramine and start on Budesonide for a course of 12 to 16 weeks, starting with 3 capsules for four weeks, 2 capsules for the next four weeks and weaning down to one capsule for the next four weeks. However, I am having second thoughts on Budesonide. I have read there are many side effects or could be. I’m very afraid of osteoporosis which I don’t have now. I plan to increase my calcium/magnesium/vit D from one pill a day to 3 to try and compensate. I have had no instructions from my doc as to what supplements if any to take.
My question is: If I’m doing well on the Cholestyramine now, is it wise to quit it and change to Budesonide and actually be starting over? I was told I might have some diarrhea the first week or so and if so, to take Imodium. I want to follow my doc’s instructions as he's a very good doctor, however as the old saying goes, if it ain’t broke don’t fix it. I might be totally wrong about this and it might be that by taking the cholestyramine I am fixing or helping with the bile acid situation, but I am not correcting the inflammation from the colitis. And, perhaps I need to try and correct that. It just worries me and I am to start the Budesonide tomorrow. I guess I am to just quit the cholestyramine cold turkey tonight. Any advice would be comforting.

[tex]

Hi,

Welcome to the group. I'm not a doctor, but in my opinion, if the cholestyramine is working that well, it would be mighty foolish to quit taking it And switch to budesonide, because budesonide is only a temporary treatment. True, it's an anti-inflammatory, but that's only true while you're taking it. It will not cure microscopic colitis, it only stops the inflammation as long as you continue to take it. Roughly 80% of MC patients who respond to budesonide relapse soon after the treatment is ended. That would put you back at square one, and each time that a budesonide treatment is stopped and restarted, published research shows that budesonide becomes less effective, until eventually, It will provide no significant benefit.

If the cholestyramine continues to work, that's proof that BAM is indeed the issue, and your LC is in spontaneous remission. If the cholestyramine stops working, you can always try the budesonide then, if you want, but rather than do that, we've found that by avoiding gluten (and casein and soy, if necessary), microscopic colitis can be put into remission, and kept there.

I hope this helps. Again, welcome to the group, and please feel free to ask anything.

Tex

[Cmarlene]

Tex, Thank you so much for your reply. I agree completly that if Cholestyramine is working, why change things? And I also agree that if it stops working then I can try the Budesonide. I guess I just wanted to hear from someone more experienced whether I was on the right track or not.

I have not posted before and only joined in August. But, I have become an avid reader of this forum and learning so much. Before this, I never knew that miscroscopic colitis existed! Believe me, I am getting an education. I believe I will stay on the Cholestyramine and see how it turns out, knowing that I have a backup in the form of Budesonide. Thank you again, for a speedy reply to my questions. I will be sure and post my updates as the time goes on. Greetings to you and all the fine folk here.

[tex]

Thanks, we appreciate those who share their successes (and their failures) in their journey back to health. We learn from each other.

Tex

[Cmarlene]

Hi all,
So, I'm still on the Chorlestyramine and starting on Sept 16, I reduced my dosage from two packs a day to just one at bedtime. No change in BM, no change in anything. And, it seems that so far I am able to eat a lot of things. I do try to use (whenever I can get it) lactoid free milk, next milk or almond milk. Unfortunately it is not as widely available to me as regular milk. Also using a lot of gluten free products. But if I eat something not gluten free it doesn't seem to affect me, as far as I can notice anyway. So, I intend to stay on the one powder dose at bedtime for a while longer and maybe try and reduce the dosage a wee bit like 3/4 pack or half and if there is no change I will stay there at that dosage for quite sometime. I like to do things slowly as to not stir up or irritate anything in my gut. Who wants to go backwards?
Every day I wonder if things are going to keep going this way for me and still scary to eat certain things and just hope for the best. So far...so good. Good luck to everyone here on this journey we are on.

[tex]

Thanks for the update. Your plan definitely seems to be working. Almost always, if we listen to carefully to our body, it will tell us what we need to do.

Incidentally, you mentioned in your first post that Canada's healthcare system is having problems. Apparently that's true for probably most of the healthcare systems of the developed countries. Here in the U.S., our healthcare system is the most expensive in the world, but the healthcare itself has deteriorated to a shadow of its former self. Almost all of our primary care doctors have disappeared, and have been replaced by fresh graduates of med school, PAs, or NPs.

Tex

[Cmarlene]

Hi Tex,
I had no idea that the healhcare system in the US included a shortage of doctors. That is one of the main issues in Canada as well. Makes me wonder, where are the doctors going? In NS where I live and probably the same across Canada, the doctor shortage is being blamed on a number of doctors retiring, especially during the early Covid days. Also, I don't believe enough money is being filered into the universities to encourage or help younger people who wish to become doctors. Although it's been said that specialist training is far more popular for emerging medical students than a general practicioner, we are not seeing an overflow of specialists in our area. In fact where I am living there are only two gastroenterologists that I can find and it's a fairly large area. Also there is just one dermatologist who serves this whole area and also works in the city which is about 100 k or 60 miles away. This also goes for at least one of the gastroenterologist. This is totally unacceptable and over 160000 people are currently without a doctor at all. I am lucky I suppose, to have a nurse practicioner. Life is tough when it comes to our health, and not being able to access proper healthcare in a timely fashion is again, unacceptable, and yet we are told to accept it. Sorry for the rant.

[tex]

I''ve written an article on that topic for my blog, but due to a backlog of articles, it isn't scheduled to be posted until November 22. I'll email you a copy. If it doesn't show up in your mailbox, please let me know, and I'll send it some other way.

Tex

[Cmarlene]

Received it and digested it. Some of it is so familiar to events in Canada. It seems that the problem(s) are universal. Your article has prompted me to write one of my own and to move forward with my desire to 'do something' and try and get more people involved in speaking up. I presently call it, Patient Input Coalition (PIC) How I will move forward is yet unknown to me since I am currently dealing with my own health issues. But, I believe that the only way things will improve in the health care system, no matter what country, is through voices of the people. Thanks for sharing the article; the info there is invaluable.

[tex]

Best of luck in your efforts.

Tex

[Cmarlene]

My Update on BAM/MC journey
It's been a month since I was last here. Trying to figure out what causes microscopic colitis and whether my BAM is a result of it or whether the MC is caused by the Bam. Would be some easier to try and figure out how to deal with this if there was a possibility of knowing which came first the chicken or the egg.
So, to start here’s an update on my MC and BAM situation. After diagnosis of both in August I have been taking Cholestyramine. At first one sachet and then two. After about one month I felt almost normal and decided maybe I’d try and cut back to one sachet a day. After a week or so of that, I found that instead of one BM a day I was often having two. No WD just two normal BMs. Barely any gas or pain but some irritation with hemorrhoids indicating to me still much inflammation.
I decide to go back to two sachets of Cholestyramine a day, one at 11 am and the other at 11pm, keeping them twelve hours apart and spacing for meals and meds. That’s where I am now. But I am still now noticing a day or two here and there of two BMs a day. Only thing has changed in the meds is that now I am taking Cholestyramine light because the others without the aspartame is not available. I do believe the regular Cholestyramine was better. I’ve been told to keep checking in hopes that it might become available soon. Things are not that bad and very livable this way but still I am working on the diet part. With BAM one is to keep the fat low. With MC fat is encouraged. How does one handle that? Which one to listen to? If I could figure out which came first, which caused the other, then I’d have a better idea what to eat.
Now, it seems though even if I am trying to go gluten and lactose free, I don’t always do it. And, I find that even if I do eat foods with either or both of them, it doesn’t seem to make much difference. So, I saw a dietician who said what I was eating seemed to be going okay and didn’t have much to contribute except to encourage me to eat more protein and try and increase my weight which hasn’t moved since August. I do eat decent meals, enjoy eating and eat a good supply of cooked vegetables, potatoes, white rice, pasta, sometimes gluten free, make gluten free pancakes, eat oatmeal and use almond or next milk, along with chicken, ham and fish. I also take Ensure plus and the dietician said to increase to drinking two a day. I really don’t think that adding those calories is helping much. This time I could only get extra protein Ensure which I am not liking or it’s not liking me.
So, I asked this question to the dietician about whether to eat fat or not eat fat. (I know we need some fat) but my dilemma was over how much fat. She said that since I seemed to be controlling the BAM with the Cholestyramine, I needn't worry about how much fat I eat. Therefore, I decided to eat more as she had suggested. Two things I had not eaten for a long time were minced beef and mackerel. (In the same day) I found the next day not to feel as well, stomach was a bit angry and of course two BMs. Now I’m wondering is one of these a culprit? I am still trying to figure that one out.
Anyway, although I am still doing well, I hope to do better and I really wish I could gain a few pounds. Hoping everyone here is making headway in the journey to better health.

[tex]

Lactose is not the problem with dairy products — It's casein, the primary protein in all dairy products. If we're sensitive to it, we have to absolutely avoid all traces of casein, which means avoiding all dairy products. Most energy drinks such as Ensure are loaded with casein derivatives, and soy derivatives.

You say:

I am trying to go gluten and lactose free, I don’t always do it. And, I find that even if I do eat foods with either or both of them, it doesn’t seem to make much difference

it's no wonder that you can't reach stable remission, because our diet has to be 100% free of any foods that cause our immune system to produce antibodies against them, and we have to be 100% free of those foods all of the time, not just now and then, at our convenience. It's surprising that you are doing as well as you are with such a casual attitude toward food sensitivities in your diet.

The reason you can't pinpoint whether certain foods are bothering you, or not, is because gluten antibodies (anti-gliadin antibodies) have a 120 day half-life. That means that our immune systems can still be affected by anti-gliadin antibodies for weeks or months after we remove all gluten sources from our diet. And as long as those antibodies still affect us, we can't tell for sure which foods we are reacting to, because gluten dominates our immune system. The length of time required for our antigliadin antibodies to decay to a level where they no longer dominate our immune system can vary from a week or so to months, depending on how high that antibody level was when we removed gluten from our diet, and whether or not we have been re-exposed to gluten since then. Since we're all in different situations, our symptoms can vary all over the place depending upon our individual situation.

That said, for some people, two bowel movements per day is normal. In general, if we have MC under control, our bowel movements should be very similar to what they were before we acquired the disease. They may not be identical, because our diet has changed, and diet has a major effect on bowel habits. So the question to consider is, "What about your other symptoms?" If virtually all of your MC symptoms have faded away, you're in remission. If you still have symptoms, your MC is not in remission, and there's still lingering inflammation that's preventing your immune system from returning to normal, and your intestines from heating.

I hope this helps,

Tex

[Cmarlene]

Thanks Tex, I agree I have been bad with the diet. I am sure I am paying for it lately. The last few days I’ve had an angrier stomach and hemorrhoids off and on. Bathing with Epsom salts seems to help along with H medication. To me that indicates that I still have a considerable amount of inflammation. I’ve been checking back on my food journal and can’t see that I’ve eaten anything different or added anything. One thing I did eat that before all this I was able to without a problem, was sweet potato. Other potatoes are fine. So, I have to keep a watch on certain foods like that. I am concerned that the Cholestyramine I am taking which is the Light kind with aspartame might not be working as well for me as the one I was taking back in Aug/Sept, with sucrose. But there is nothing I can do about that because the pharmacy cannot get the other cholestyramine right now. I will keep asking though and if they are able to get it, then I will ask for a switch. I notice the C light is not as grainy and much finer than the other one which was harder to take but I’d do it if it gave me better results.
I am still trying to figure all of this out and although I’m much better off than I was before August I want to be better still. I guess it takes time and much of it. I must get better with my diet for sure. But one good thing happened and that is that I gained a couple of pounds which tells me I can gain and I realize how long it takes to even gain a few pounds so I am being patient with that. There is a FB page about BAM and their motto seems to be 50 percent diet/50 percent binders. Not sure what that all means but I’m happy to stay on Cholestyramine if it keeps me feeling normal, but I know I need to clean up my diet as well.
Here's to the continuing saga of living with MC and also BAM for me

[tex]

Most of us react to artificial sweeteners, and aspartame seems to be the worst of them all.

Tex