Confusion about budesonide....need a little help

[Lou Ann]

Hi, so glad to to read about people with MC....I was diagnosed 15 years ago and back then was given lomotil to take before breakfast and a good luck and pat on the back....second try was the cholestyramine which helped but constipated me quite quickly.....a couple weeks ago I had my third colonoscopy, same result...obviously.....my GI put me on budesonide 9mg.....I again was constipated within a few days, so he cut me down to 6mg ...and here's the confusion....he told me to take the "magic drink" .... Miralax, benefiber, and Metamucil, equal parts twice a day to relieve the constipation.....everything I read on here says fiber is a no no....I feel like the doctor is just pulling ideas out of a hat so I quit complaining, but going from doing the 50 yard dash to the toilet and knowing every bathroom in a 10 mile radius to not going for 4 days straight is making me nuts....I don't even know what normal is supposed to be, but running for years and years to not moving then wants me to reach for a laxative.....I'm sure someone, anyone can relate...should I do what he says and take the steroid and magic drink, or stop the 8 weeks of a steroid and keep trying with diet control? I'm not really into taking medicine that just covers up the problem....unless it works without all the constipation.....sorry for this rant, but I am confused....any input would be appreciated! Thank you...

[Gabes-Apg]

welcome Lou-Ann

Yes i agree, i think the doctor is pulling ideas out of a hat!
taking his magic drink is a bad idea...

what some people here have done is done a low dose of the budesonide - 3mg each day or even 3mg every second day or every third day.
so that there is no Diarrhea/short notice urgency and as you have experienced, avoiding constipation.

if you were having loose urgent BM's prior to the colonscopy then there is something either in your diet or your environment that is triggering you...

Not sure how much reading you have done today - histamine is a common issue for many MC'ers. another option that may help better if you are having histamine issue is using some anti-histamine medication rather than the budesonide

the other question - how are your Vit D3 levels? have they been tested recently? ongoing inflammation depletes Vit D3.

[Lou Ann]

Thanks for replying Gabes....
When you say anti hystamine, do you mean something like claratin or Benadryl?
I live in Pittsburgh Pennsylvania....my vitamin D is low every winter, but normal in the summer I just started taking supplements for that....
I also was floored reading raw veggies are terrible....my GI really never said it was a diet issue...
I stopped the dairy products and artificial sweeteners, and now will eliminate the raw veggies and go from there I guess.....
I will also play around with the budesonide dose....I just have a gut feeling (no pun intended) when I stop them the D is coming right back....
Thanks so much for your input!

[Gabes-Apg]

yes, claritin, or benadryl or allegra

regarding the Vit D3 - people with IBD's use more than 'normal people' so we encourage people to be in the upper ranges of 'normal' in their blood tests.

there are not many GI's that will discuss or recommend diet changes as a main form of symptom management. As you will see by the success stories and various discussions here, we have figured out what works and what doesnt...

keep reading... you will see lots of discussions about histamine...

happy healing...

[brandy]

Hi Lou Ann,

Welcome to the forum. I was an entocort user. When you get constipation you simply step down to a lower dose. Do not take magic drink.

8 weeks of a steroid

Eight weeks is generally not long enough on entocort (budesonide). Eight weeks gets you high risk of relapse. Here on the forum we find 3-1/2 month, 4, 5 or 6 month generally works well and reduces/eliminates relapse when you get off. Entocort does not heal us. Entocort helps us manage the disease while we work on diet. Diet modifications heal us. We find long slow taper at low end works well when you are getting off of Entocort. At the low end think one pill every other day for a month, one pill every third day for a month and then you get off of the drug.

[tex]

Hello Lou Ann,

Welcome to our Intenet family. The reason why the conventional medical approach to treating MC doesn't work very well is because doctors believe that MC should be treated similarly to the other IBDs, and they don't really know how to threat them either. They treat IBDs in the only way they have been trained to do, by throwing drugs at them. And after that approach runs out of steam, they try various other random ideas that sometimes work for a while. By treating the symptoms instead of treating the cause of the inflammation, they do their patients a grave disservice because when chronic inflammation is allowed to continue, it opens the door to the development of additional autoimmune diseases. All AI disease is caused by chronic inflammation, and so is cancer, heart disease, and most other diseases for that matter. I apologize if you're already aware of this, but in case you are not, here's a quick explanation of why diet changes are essential in order to treat MC. This is why you always relapse after a budesonide treatment is ended — because the inflammation is still being regenerated with every meal.

The first thing to understand is that in virtually all cases when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and this causes a problem of increased intestinal permeability (aka leaky gut) that opens the door to additional food sensitivities. The immune system produces antibodies against these foods and the continued ingestion of the foods results in an increase in T cells in the epithelial lining of the intestines. The increased T cell activity causes a condition of chronic inflammation.

The only way to stop the continued production of the inflammation that perpetuates the disease is to change the diet to avoid the foods that cause the production of antibodies. This will allow the inflammation to fade away, and the clinical symptoms will resolve as the intestines heal. Anti-inflammatory medications can mask the symptoms, but they cannot stop the generation of new inflammation, so even in cases where a medication helps, when the treatment program is ended, the symptoms soon return, unless certain diet changes have been made earlier in the treatment program.

The obsolete blood tests used by all mainstream MDs will not detect the type of non-celiac gluten sensitivity that causes our reactions. The antibodies are produced in the intestines (not in the blood), so that rarely do enough of them leak into the bloodstream to produce a positive blood test result. Furthermore, the tests they use are so insensitive that they are pretty much worthless even for diagnosing celiac disease unless the disease has been damaging the small intestine for so many years that the villi are almost totally destroyed (a Marsh 3 level of damage). But many celiacs never reach a Marsh 3 level of damage. Because of such poor sensitivity, many authorities claim that only about 1 in 20 celiacs are ever diagnosed, despite having severe clinical symptoms (doctors can be rather dense when they want to be, because liability risks sort of force them to "go by the book"). Here's a medical research reference if you don't believe me:

From page 108 of the book Microscopic Colitis:

One such study looked at 115 subjects with biopsy-proven celiac disease and found that only 77 % of those who had total villus atrophy showed a positive serum anti-endomysial antibody test result.6 Furthermore, in this particular study, only 71 % of the total number of subjects had total villus atrophy, and for those who had partial villus atrophy, only 33 % showed a positive anti-endomysial antibody test result. As the research report so eloquently pointed out, “Serologic tests, in clinical practice, lack the sensitivity reported in the literature” (Abrams, et al., 2004, p. 547).

Here is reference 6 from that quote:

6. Abrams, J. A., Diamond, B., Rotterdam, H., & Green, P. H. (2004). Seronegative celiac disease: increased prevalence with lesser degrees of villous atrophy. Digestive Diseases and Sciences, 49(4):546–550. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15185855

As poor as the sensitivity of those tests are for detecting celiac disease when total or near-total villus atrophy has already developed, anyone who has a lower level of damage is out of luck — the tests absolutely will not yield positive diagnostic results for them, so their doctor is forced to officially declare them to be "not gluten sensitive". And most of us are not even celiacs, so our level of intestinal damage is less than Marsh 3 (we typically show a Marsh 1 level of villus damage). A Marsh 1 level of damage is consistent with the inflammation in the colon that's used as a diagnostic criterion for lymphocytic colitis (LC). Therefore our chances of being diagnosed as gluten sensitive by a mainstream doctor are close to nil (unless they stray from the official diagnostic guidelines), even though virtually all of us are just as sensitive to gluten as the average celiac.

A lot of people try the GF diet for a few weeks, decide it isn't working, and go back to eating gluten again. Short term gluten avoidance is typically just an exercise in futility. It takes a while to get our antibody levels down to a level at which we stop reacting. The half-life of IgA anti-gliadin antibodies is 120 days, so if our antibody levels are high when we begin the diet, it can take a long time for them to decline down to a normal level. And the big catch is that if we do not also exclude all of our other food sensitivities while we are avoiding gluten, those foods can prevent us from ever reaching remission. We have to do virtually everything right (not just most things right) in order to control this disease, because it can be very unforgiving. We have to be just as determined to kick it to the curb as it is determined to ruin our life.

Also, please be sure that you are not taking one of the many medications that are known to trigger MC, because as long as you are taking it, achieving remission will likely be impossible, no matter what else you might do with your diet or anything else.

As Gabes pointed out, MC causes serious nutrient malabsorption problems, and patients soon become deficient in vitamin D and magnesium, and eventually deficiencies of some of the B vitamins can occur, leading to neurological problems. These deficiencies tend to make the clinical symptoms significantly worse, and weaken the immune system so that it can't function properly.

That said, if you prefer to use medications to control your symptoms rather that to use diet changes, (or if you use a combination of diet changes and medications) the key to preventing constipation when using budesinide is to reduce the dose anytime constipation begins. And the key to preventing a relapse of sympotoms when ending a budesonide treatment is to taper the dose very, very slowly after the dose gets down to 1 capsule per day. A very slow taper prevents/reduces the very inflammatory mast cell rebound effect that typically occurs when a corticosteroid treatment is ended.

And in order to understand why fiber is contraindicated for MC patients (and maybe not good for anyone), please read the enlightening article written by Dr. Eades at the following link. Dr. Eades shares my views of the overhyped benefits of fiber.

A cautionary tale of mucus fore and aft

That said, soluble fiber can help to bulk up stool, but again, as is the case with any medical condition, the best way to treat constipation is not to treat the symptoms — the proper way to treat it is to prevent it (in this case by reducing medication doses).

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

Tex

[dhouts]

Thank you for explaining why we should not ingest the powdered fiber. I was told by my former GI doc to use it and I questioned the wisdom of her advise. I thought because I had WED that ingesting that fiber would only add to the violence my gut was already experiencing. She said no, that the powdered fiber would fill up the space of the water, returning things to normal. I informed her that my first GI doc said not to use it when flaring, but she disagreed and insisted that I use it. I never bought it. I never bought her idea and I never bought the fiber. It didn't seem like a good idea and now I'm really glad that that I listened to my inner voice.

[tex]

Diana,

You made a wise choice. Many physicians mistakenly think that fiber will help MC patients because it sometimes helps "IBS" patients (I use quotation marks because I don't consider IBS to be a disease — IMO "IBS" is a collection of symptoms of one or more undiagnosed diseases). Gastroenterologists correctly believe that it sounds so much better to say, "You have IBS", than to have to say, "I don't have the foggiest idea what's wrong with you, but don't forget to make arrangements to pay my outrageous bill on your way out.

But as Dr. Eades discussed, fiber works to "promote regularity" (as fiber fans love to claim) by irritating the cells of the mucosal lining of the gut. Fiber actually physically tears these cells and when that happens the immune system marks those cells for destruction and replacement, because it is easier to replace them than to try to repair them. Once the cell is marked for destruction (a process known as apoptosis), it dumps all of its mucin supply immediately. When combined with water, mucin makes mucus, which helps to lubricate the inside of the intestines, and this speeds up motility to induce a bowel movement. And this thrills fiber fans because it prevents them from having to track down the problem with their diet that is causing constipation in the first place. I would point out that there are 2 very common causes of constipation — dehydration and chronic magnesium deficiency. But magnesium deficiency is a primary cause of dehydration, so that leaves chronic magnesium deficiency as the main cause of constipation.

The main point here is that the last thing most MC patients need is faster motility and another bowel movement, and they certainly don't need any additional damage in their intestines. Most MC patients have more than enough intestinal damage already, so thank you very much, to all the misguided physicians who advise MC patients to take fiber supplements, but no thanks.

Your inner voice knows what it's talking about.

Tex

[Lou Ann]

Thank you Tex, I don't know how I missed these last few posts but I did....I usually get an email saying someone responded.
I stopped the budesonide and never did take the "magic drink" my GI suggested.....it was just not sitting well with me to take a pill to constipate me and drink something to make me go....no thanks.
A question I have is what kind of doctor are you suppose to see if a GI has no clue what to do about MC besides feed you drugs?! I could go on about that forever, but I won't. Something caught my eye about what you said about if you are taking a certain medications anything that you are trying to do to heal your MC won't work anyway… I was wondering what medications you are talking about? And also is it vitamin B 6 specifically that I should take....I have been taking B12..... I am also a migraine sufferer so I did buy the magnesium lotion to try and also the supplement that Gabes suggested ...... I am anxious to see if it works. I sure hope so! Thanks again everyone…

Lou Ann

[Gabes-Apg]

Something caught my eye about what you said about if you are taking a certain medications anything that you are trying to do to heal your MC won't work anyway… I was wondering what medications you are talking about?

This is along the lines, that the medication procotols recommended for MC either reduce inflammation or slow motility - this is not healing. Medications will help reduce the symptoms, but for the body to 'heal' you need the right nutrients.

I hope the magnesium works for you, be patient, it takes time to resolve deficiencies.

[Lou Ann]

Thank you Gabes, I thought when Tex said this........."Also, please be sure that you are not taking one of the many medications that are known to trigger MC, because as long as you are taking it, achieving remission will likely be impossible, no matter what else you might do with your diet or anything else"
He might have meant taking certain otc meds or prescription meds might be causing inflammation.

[Gabes-Apg]

my apologies, Yes - There are meds that have been known/linked to cause/exacerbate MC and that is separate to needing the right nutrients to heal

One thing to keep in mind, it is not black and white that these medications will cause all people to get MC. There are many other factors that contribute to inflammation triggers.

There are currently approximately a dozen known types of microscopic colitis (including the most common forms, collagenous colitis and lymphocytic colitis). Any of them (they all have similar etiologies, symptoms, and treatments) can be caused (in some cases) by the use of antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, tricyclic antidepressants, bisphosphonates, statins, calcium blockers, and a few other medications.

[Lou Ann]

No apologies please!
I am on statins..... That's a big bummer to me because heart disease runs in the family , so if that is contributing to the MC what is one to do? ugh....so frustrating.

[Gabes-Apg]

make changes to accommodate both...

Remind yourself, we cant do everything totally perfectly -
we can do our best, based on what is actually happening (not what might happen)
does that make sense

[Gabes-Apg]

There has been quite a bit of mainstream articles questioning the viability of statins
also - more and more mainstream research confirming that cholesterol doesnt cause heart disease - inflammation does.

Things like MC coming into our lives is the chance to research, review and tweak things a bit

is taking statins the only thing that will protect you from heart disease? not really
diet changes, and lifes style changes, keeping inflammation at a minimum are more likely to protect you.