Notice: For Anyone Taking Entocort In Multiple Doses

[Stephanie]

I don't have an answer for you, but I feel your pain of trying to keep up with all that powder as well other meds. I tried Olystr instead of budesonide but not together so I'm not sure if you can or not. I am sure someone here will know though. Good luck!!

[nerdhume]

Welcome Ed.
I had almost the same timeline, gall bladder removed, 6 months later bile dumping and given Welchol, 2-3 years later dx MC.
I'm not sure if anyone else takes both meds I stopped the Welchol when I began Uceris.

[JFR]

I am not even ready to begin any of the diet changes, as I am just trying to work on being freshly diagnosed with MC.

I can't give you any help with your questions about medication but I do encourage you to think about the dietary changes. For almost all of us here dietary changes have been the key to attaining remission. Gluten, dairy, soy, and eggs, in that order, are the 4 major offenders. In the long run and maybe even in the short run, removing the foods that are causing your symptoms of MC is the best route to take. At best, medications are only a temporary fix, helpful to slow down symptoms but not a permanent fix. Many people here have started out not wanting to make any dietary changes, but over time have discovered that it is the only way to get their health back.

Jean

[edreggi]

JFR -

I completely agree about the dietary changes being something long term and even short term that needs to be addressed for me. I am already dairy free due to lactose intolerance since birth. At this point, I am trying to find a way to function since removing the Cholestyramine from my body has resulted in violent episodes of Bile Dumping for 72 hours. Everything I eat is causing a chain reaction of D with the majority being bile. When I was using the Cholestyramine for the last 2-3 years, at the very least I still had D but the bile was "neutralized" and not as painful of a BM.

Is what I am experiencing normal when people transition off Cholestyramine to Budesonide? If so how long does this take to see the Bile Dumping taper off?

I have a call into my liver doctor this morning. Oddly when I spoke to his nurse yesterday, I asked if I should slowly gradually go off Cholestyramine and if I should continue to take Nexium in the evenings. She asked the doctor and said Nexium is fine to take with Budesonide; however, in some of the my readings on MC there are claims that Nexium and other drugs like Prevacid can actually cause MC. This is all so confusing and troubling since I have been on proton pump inhibitors for my acid reflux for nearly 3 years.

[nerdhume]

I feel your pain. Those of us that have had battery acid WD understand.
The first thing you need to accept ... most doctors know less about MC than those of us on this board. That's because nobody that doesn't have it can understand all the issues. There may be rebound if you stop the Nexium, but indeed you should get off it. And it may have contributed to the MC you have now.
There are many here way more knowledgeable than me, they will be along to offer more detailed information.

[tex]

Hi Ed,

Welcome to our Internet family. I'm sorry to read that you're still having bile issues 4 years post gallbladder surgery. I agree with Theresa that the Nexium is probably one of the causes (if not the primary cause) of your continued digestive system problems. Here's why:

Normally, unused bile fatty acids are absorbed in the terminal ileum (the last segment of the small intestine, connected to the top end of the cecum, which is the valve that controls flow from the small intestine into the large intestine, and it prevents backflow of contents from the colon into the ileum). After reabsorption, the bile salts are normally recycled by the body to produce cholesterol which is used for other vital body functions (such as the production of vitamin D in the skin when exposed to sunlight). The fact that your excess bile salts are going into the toilet, rather than being recycled, significantly increases the risk that you have a vitamin D deficiency.

I have no idea why most doctors are so in love with prescribing PPIs to patients, but PPIs are some of the most iatrogenic drugs available today. They are known to cause MC, osteoporosis, increased risk of hip fractures, C. diff infections, malabsorption problems, and several other issues that I can't think of at the moment. Yet doctors continue to prescribe them as if they are actually harmless to our health. PPIs can cause many adverse effects, but the ones of interest specifically in your case are:

1. Altered gut microbiome

2. Malabsorption issues resulting in the severe malabsorption of fat (which is why you can't absorb the bile fatty acids)

3. Vitamin/mineral malabsorption, specifically vitamin D, vitamin A, vitamin B-12, vitamin B-9 (folate), magnesium, iron, calcium, and zinc

All of those items are documented by medical research to cause serious health problems that may appear to be unrelated to the cause, so doctors typically miss the cause of the problem, and try to treat the symptoms instead (instead of discontinuing the use of a PPI). The inability to absorb the bile fatty acids in your terminal ileum is the reason why you are still having bile dumping problems. If the bile was properly absorbed in the terminal ileum, only a fraction of the total amount would reach your colon, and it wouldn't cause symptoms.

All of the malabsorption issues are significant, but for example, a vitamin D deficiency is known to be associated with many health problems, and the ones of interest in your case are specifically:

1. An increased risk of developing or perpetuating GERD

2. An increased risk of developing an IBD (such as MC) and additional autoimmune diseases, because of a weakened immune system

My guess is that you may have been deficient in vitamin D initially, and that led to your development of other issues, because without adequate vitamin D, the immune system cannot function properly, and disease resistance can decline drastically. Our experience has shown that gallbladder issues are commonly associated with MC, so gallbladder issues might also possibly be associated with a vitamin D deficiency, though we don't know that to be a fact, since it hasn't been proven (or even studied) by medical research. In addition, IBDs (including MC) deplete vitamin D supplies, so we need much more vitamin D than the typical official RDAs indicate. And if we take a corticosteroid (such as Entocort), these drugs further deplete vitamin D supplies, so we typically need even more vitamin D.

I'm not a doctor, so this is certainly not intended to be medical advice, but if I were in your situation I would wean off the PPI, and begin taking significant amounts of vitamin D. That should allow you to eventually be able to do without the cholestyramine. It's always a good idea to test vitamin D levels occasionally, and adjust our supplemental use accordingly, if necessary. Weaning off a PPI can be difficult, because the drugs tend to cause the very symptoms that they are prescribed to treat, resulting in a rebound of symptoms when the drug is discontinued, so you may need to take normal precautions to prevent reflux problems after you begin to wean off the PPI. Information on how to do that is available on this board. Just ask, if you can't locate it, and someone will be more than happy to discuss how to go about it.

Since cholestyramine reacts with virtually everything else, timing precautions would need to be observed if it were taken concurrently with Entocort (budesonide), but as far as I am aware, there is no significant interaction risk, otherwise. IOW, the primary risk with cholestyramine is malabsorption. I'm kind of surprised that your doctors haven't figured out why you are failing to absorb the excess bile salts, but maybe they just don't understand how the digestive system works (or how PPIs work).

Again, welcome aboard, and please feel free to ask anything.

Tex

[Lilja]

Hi Ed,
The fact that your excess bile salts are going into the toilet, rather than being recycled, significantly increases the risk that you have a vitamin D deficiency.

Tex

Tex,
How does one know that bile salts are going into the toilet? Does it have a color, or does it float, or do we smell it? Or, is this a test result from the laboratory?

Lilja

[nerdhume]

Not sure if this is fact for everyone...my experience Bile Acid WD was green and felt like acid (removed the skin from any place it touched).
When WD 20 times per day started my PCP thought it was excess bile again. I told her it wasn't. She asked how I knew. I said if you have ever had acid coming out your butt you don't forget what that is like.

[tex]

Lilja,

Theresa's explanation is right on target.

Tex

[Gabes-Apg]

When I had a bad bowel twist, the nurse didn't reconnect the suction properly on the NG tube.
I spent 2 hours vomiting bile acid. Worst 2 hours of my life. Other people in the hospital thought I was dying.

[Lesliejhart]

I discovered this site today. I was diagnosed with lympocitic colitis 7 months ago. I took a round of prednizone then within two weeks had diahrrea again. Three weeks later I started Budesonide and again found relief although I would occasionally still have D. I was able to determine dairy was a problem and knew that leafy greens were also a problem. From reading this forum, I suspect taking a SNRI antidepressant the past three years might have contributed, although I have taken antidepressants for over 30 years. Two questions. Is it harmful to take a low dose of Budesonide for long term maintenance? Also, how did you determine so precisely the things you could not eat, like grapes. I don't see vegetables mentioned much, but suspect many of them.

Thank you for the time you devote to this forum!

Leslie

[tex]

Hi Leslie,

Welcome to our Internet family. I don't understand why GI specialists still prescribe perdnisone to treat MC, because the symptoms always return soon after the medication is discontinued, and prednisone has too many serious side effects to be used for long-term treatment. Budesonide is a different matter. While it is still a corticosteroid, less than 20 % of it is absorbed into the bloodstream, and so side effect risks are far less than with any of the other corticosteroids (except Uceris).

Long-term risks of taking budesonide at low rates are minimal. We have many members of this discussion board who have been using it for 5 years or longer, without any apparent adverse effects. Since the most significant of the risks appears to be a slightly increased risk of developing osteoporosis (or adding to existing osteoporosis damage), long-term use is more suitable for older people than for younger individuals, especially if the plan is to take budesonide for the rest of one's life. Unfortunately some doctors don't understand the differences between budesonide and the other corticosteroids, and so they are overly-cautious about prescribing it for long-term use.

The bottom line is that there are risks involved with using any medications, but for most people who have an IBD, and who are unable to control their symptoms by diet alone, the long-term use of budesonide will typically result in a much more satisfying lifestyle than they might have without it. That said, IMO budesonide should only be used long-term if complete resolution of symptoms cannot be maintained by faithfully following a diet that excludes all food sensitivities (and all medications) known to produce symptoms.

Regarding tracking down problem foods, early on I kept a food/reaction diary. For some foods I was able to use EnteroLab stool tests to verify which foods were safe and which were not. Of course stool tests for foods such as grapes are not available, but that one was easy. Approximately 3 hours after I eat grapes they will clean me out in a hurry, every time. It could be the sulfites, or the sorbitol content, or the combination, but grapes definitely don't work for me.

Regarding leafy greens, virtually all of us have to avoid all raw vegetables and fruit (except bananas) while we are recovering. If we peel the vegetables, and over-cook them (and keep the serving size reasonable so as to minimize the amount of fiber) we can digest them much more easily while our digestive system is inflamed. Iceberg lettuce is the worst (most irritating to the gut). Most of us are able to eat vegetables (well-cooked) such as squash, carrots, broccoli, green beans, and sweet potatoes. Some of us can handle white potatoes, but others have trouble with them, at least while they are still recovering. After we recover, we can usually eat most raw fruits and vegetables again without any problems.

Again, welcome aboard, and please feel free to ask anything. And thank you for your kind words.

Tex

[Adelaide]

All this information is very helpful. Today my GI doctor prescribed Budesonide. I have to take it as a single dose and after reading this I will make sure I take it in the morning. Does it matter if I take it with or without food? Also while on this medication, what dose of Vitamin D should I take? I was a bit nervous about taking this medication but you have set my mind at ease Tex. Thank you

[tex]

Hi Linda,

Budesonide can be taken with or without food. 5,000 IU of vitamin D is a good, safe starting dose for anyone. That is the average amount used each day by an average person. Since you have MC, and since you will be taking a corticosteroid (both of which deplete vitamin D), you may need more, especially while you are taking budesonide, and especially if you know that your vitamin D level is low to begin with. I would probably take something like 7,000–8,000 IU per day if I were taking budesonide. If you get a lot of mid-day sun exposure on your skin you may need less vitamin D supplementation. On the other hand if you get less than an average amount of sun exposure you would probably need a dose in the 7,000–8,000 IU per day range or more while taking budesonide.

You're most welcome,
Tex

[Adelaide]

Thank you so much Tex. I was already taking vitamin D but I will up my dosage. I will also take into account the sun exposure. It is pretty hot and sunny here at the moment and I have been conscious of spending a little time outside to absorb some vitamin D. Thank you again. I love being able to come on this support site