Back on Entocort

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DJ
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Back on Entocort

Post by DJ »

:shithitsthefan:

I put forth my best effort to resolve a relapse without Entocort and now I'm back on. Just as Tex had mentioned in my cholestyramine post, my gastroenterologist wants me to start at the full 9 mg dose and work my way down again.
Yesterday was day two on Entocort and I felt extremely tired and had a low-grade fever. I remember feeling extremely exhausted while on Entocort but now that I'm doing it a second time, I'm seeing a strong connection between the medication and the feeling.
In any case, the Entocort toned things down once and I'm hoping it will happen again.
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tex
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Post by tex »

Good luck. I hope it works well for you.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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DJ
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Post by DJ »

Thanks Tex. Today was much better than yesterday. I feel tired but less so and the low grade fever is gone.
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DJ
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Post by DJ »

Today is day 31 on 9mg of Entocort daily (for a relapse). My BMs are sometimes formed but not quite normal and are brown, non-watery D about 1/3 of the time. I have worked my way up to eating a small amount of cooked veggies again but cooked veggies cause cramping and D.
I would like to reduce to 6 mg to avoid the bone loss I experienced with my first regimen of Entocort but I'm worried that it's too soon. Does reducing from 9 mg to 6 mg seem reasonable even though I have not progressed very far with resuming eating cooked veggies?
Thanks.
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tex
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Post by tex »

DJ wrote:Does reducing from 9 mg to 6 mg seem reasonable even though I have not progressed very far with resuming eating cooked veggies?
:shrug: Not really. But maybe that's just me. I wonder what's causing all the inflammation. Are pollen allergies still at high levels in NY?

If you take plenty of magnesium and vitamin D, you shouldn't lose any ground to osteoporosis. According to my research, corticosteroids cause osteoporosis by depleting both magnesium and vitamin D. That means that if we are taking a corticosteroid, we have to take way more than the RDA.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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DJ
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Post by DJ »

Hi Tex.
I think it's too soon to reduce also. I will increase my current magnesium supplementation and maintain my already high vitamin D supplementation.
You've made a huge difference in my wellness over the past 2 1/2 years.
Thank you. :sun:
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Post by Erica P-G »

HI DJ,

I had a HUGE flare the month of April.....was going along great, decent normans and then WHAM! It came out of nowhere, I did not expect it, I thought I had done something terribly wrong with my diet....but forged ahead going thru plenty of aches, pains, sinus, WD and deduced it was all Allergen related all of it.

I upped my Magnesium, doubled my VitD3 (and will need to continue with this protocol for a few months per Dr.) and took allergy med every morning and also nightly for a period of time too (getting as much good rest as possible). I still take the allergy med for day, but in the last 3 weeks all symptoms have backed off, the last one to slow its ugly head was the WD, and I am just starting to see a better version of myself coming out the other side.

I guess what I'm trying to say is I think pollen, allergens etc... have a much bigger effect on us than I ever realized...I don't know what to do about it, but ride the wave. I refuse to take a med for this outbreak, I have done nothing wrong except become a victim of my environment. It has saddened me that I have potential to just flare at any given moment due to allergens and my bodies immune response to it all. I wish I understood more about all of this.

I wish you the best :smile:
Erica
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DJ
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Post by DJ »

Hi Erica,
I agree that it's difficult to face such life-altering consequences while we are going to great lengths to keep a challenging disease under control. I'm happy to hear that you are regaining your balance without steroids! I have never had problems with seasonal allergies and I have been struggling with a relapse for a year. After my recent regression to pooping WD and chewed food, I went back on Entocort. It's certainly not ideal but I felt it was time.

Hi Tex,
I took another look at my current, very limited diet. I live in a GF home and I am eating only food from my home. I am currently eating meat, fish, potato, rice, quinoa, veggies, coconut, potato chips, corn chips, coffee, and a particular mayo and margerine. The mayo and margerine contain pea protein. Prior to my relapse, I was not able to tolerate pea soup (a large quantity of peas) but could eat a small quantity of cooked peas.I avoid most legumes but was eating green beans and snap peas before my relapse. The pea protein in my mayo and margerine is the only suspect. I will eliminate the mayo and margerine to see if that's the problem.
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tex
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Post by tex »

DJ,

I definitely believe that is worth a try. Pea protein is risky for anyone who is sensitive to soy, even if they seem to be able to tolerate certain types of peas or beans.

Sometimes we have to pull out all the stops to track down a problem. Processed foods such as mayo and margarine can be inherently risky because some of their ingredients tend to push the envelope for some of us. I cut them out long ago and don't miss them, but many people seem to really crave them.

Also, I find that after being OK with them for a long time, potato chips and corn chips now cause me to have a belly ache and sometimes D. The problem is presumably too much oil. I also find that I can no longer tolerate more than a tiny amount of sugar. In my case, I believe that sugar causes leak gut, because I'm relatively certain that it was the cause of my leaky gut in the first place — I used to be a sugarholic, back in the good old days before MC.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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DJ
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Post by DJ »

It's worth a try :pigtail:
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Post by Gabes-Apg »

agree with Tex
i cant do anything that is remotely like Soy...

my other thought is maybe the combo of green beans with pea protein has built up to a level that has caused reaction
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Hello

Post by Kpietryka »

Hi everyone, I was diagnosed with Microscopic colitis 2 years ago. It all started
When I was under a tremendous amount of stress..and have PTSD. Anyway,
I'm very grateful to have found this group as I feel so isolated having this and can't seem to get any answers from the doctors about it. One doctor told me to have acupuncture, which I've had 2 sessions of so far. I also started budesonide 9 mg today. My questions are, does anybody else get nauseated with this? And what time of day should it be taken? Also I've lost 22 pounds in the last 2 months because I feel nauseated all the time. Any recommendations for the nausea? And what can o have that's dairy and gluten free that will help me gain my weight back? Thank you so much for your help
Kathy
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tex
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Post by tex »

Hi Kathy,

Welcome to our Internet family. We consider ourselves a family because no one truly understands this disease unless they actually have it.

Members here who have tried acupuncture typically find it to be helpful and relaxing.

Budesonide works best when it is taken all in one dose, first thing in the morning, or right after breakfast.

Nausea is very common with MC and roughly a third of MC patients have some degree of nausea at various times while they are reacting. The budesonide should help your appetite and help you to gain weight, but most of the weight gain will occur after you get your symptoms under control and your digestion improves. Most of us have a malabsorption problem as long as we are reacting, so we don't absorb the nutrients in our food very well.

Believe it or not, your nausea is probably a sign that you are magnesium deficient. All IBDs (because of the diarrhea and malabsorption problems) cause magnesium deficiency. And corticosteroids deplete magnesium, so the budesonide will probably make the problem worse unless you take steps to increase your magnesium intake. Many other medications also deplete magnesium. The safest way to supplement magnesium is by topical applications of magnesium oil or lotion, or by Epsom salt foot soaks or adding Epsom salt to bathwater. Oral magnesium supplements can be taken but we have to be careful not to take too much or it can cause diarrhea. The safest type of oral magnesium to take is chelated magnesium (magnesium glycinate).

Most people believe that the morning sickness that occurs with pregnancy is caused by hormonal changes, and it is. But the hormonal changes don't cause morning sickness directly. They do it by preventing the absorption of magnesium from food. The nausea is actually caused by a magnesium deficiency because without adequate magnesium in circulation, the autonomic nervous system is unable to work correctly and as a result many of the critical body functions that it regulates cannot work properly.

I didn't know that back when I was recovering, and I had an almost constant problem with sometimes-debilitating nausea. As the old Dutch saying goes, "Vee get too soon olt und too late schmart!"

I'll leave the diet suggestions to others.

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

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Kpietryka »

Thank you so much Tex,

I do have a magnesium lotion that I put on the bottoms of my feet when I go to bed. It's by Ancient minerals. I haven't been taken an oral one for about a month now. I have the magnesium glycinate, so at least I have the right one.

I do believe the acupuncture is helping. I took 1 dose of Chinese herbs this morning that were prescribed the accupunturist...they actually helped relax the gut right away, but it also made me very sleepy and have some pretty crazy dreams..at least that part was pretty cool.
Thank you very much.
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