Entocort dilemma....

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C.U.B. girl
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Entocort dilemma....

Post by C.U.B. girl »

Hi all,

I've been able to control the symptoms of CC pretty well with diet changes even before the actual diagnosis came back via a colonoscopy about three weeks ago (figured it was some form of MC, thanks to all the info on this forum! :smile: ). GI doc wants me to take the Entocort anyway, even in the absence of symptoms, because I guess there was inflammation visible on the colonoscopy, and "they say" it won't go away on its own. Meanwhile, the bottle of Entocort is still sitting in the bottle on the counter, untouched. Am debating whether or not to take it at this point, since I'm not having a flare -- anybody else have any input on this? Will inflammation reverse itself in the absence of aggravating foods? Would it be wiser to go ahead and take it now, or wait until I'm symptomatic again? I have a real aversion to taking any prescription meds unless they are absolutely necessary, so I'm pretty hesitant here, as you can tell....
Thanks for any advice...
Cindy
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2008 Celiac disease
2012 Collagenous Colitis
Family history includes ALS, ulcerative colitis, Lyme disease, mild epilepsy
beni
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endocort

Post by beni »

hi, I take endocort as if I dont my MC comes back with a vengance even though I am gluten free and have stopped eating anything that I know irritates me,ie, citrus, lettuce, onions, aubergine etc but if I was in your position I would leave them on the shelf as diet seems to be doing well for you alone, with or without endocort your gut will take a VERY long time to heal, Beni
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tex
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Post by tex »

Hi Cindy,

I agree with Beni. Frankly I can't see any valid reason to ever take a drug when there's no obvious reason to take it. Entocort cannot prevent the inflammation from being regenerated, anyway -- it can only suppress inflammation after it is formed. The only way to prevent the inflammation from being regenerated is by avoiding the foods to which you are sensitive (and also avoiding any drugs that might cause a reaction). As long as you carefully avoid all those foods (and drugs), the inflammation will slowly fade away, and your intestinal cellular histology will return to normal. As Beni pointed out, healing takes a long time (except for those who are very young), and believe it or not, it is well known in medicine that corticosteroids (including Entocort) actually slow down the healing process. They most definitely do not bring faster healing.

Doctors are notorious for treating symptoms while ignoring the underlying disease, and I can see how that can be justified, in terms of patient comfort. Treating the absence of symptoms is a new one on me, though. Why on earth treat symptoms that don't exist? :headscratch:

Treatment by diet changes is always far safer than treatment involving the use of drugs. All drugs have side effects -- the GF diet has no side effects, (other than improved health, and for some individuals, weight reduction).

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 Gloria »

I agree with Tex and Beni. The people who take Entocort usually can't control their symptoms by diet and use Entocort as a last resort. You aren't in that category; you're fortunate that diet is managing your MC successfully. I would leave the Entocort on the counter if I were you.

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Post by C.U.B. girl »

Thanks y'all - I have wrapped the bottle of Entocort in its very lengthy paperwork full of warnings and side effects, and tucked it away in a drawer in the bathroom. At least it's there if I should ever really, truly need it.....
Cindy
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2008 Celiac disease
2012 Collagenous Colitis
Family history includes ALS, ulcerative colitis, Lyme disease, mild epilepsy
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Post by Leah »

I'm happy for you Cindy, that you have no symptoms right now. I hope you never need to use the Entocort, but if you get a bad flare, then at least you have some on hand :)

Leah
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Post by DebE13 »

I wish I were in your shoes right now! :smile: That's great news that you can control your MC by diet alone. I hope to get to that point sooner than later. I have to use the entocort to help control the D. I'd keep it hidden away just in case you hit a rough patch. Then you won't have to go through the frustration of scheduling an appointment and getting the RX while every minute without it seems like years.
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Post by Mim18 »

Hi Cindy,

I wish I was in your position --- no obvious symtoms. I agree with everyone, that if you can keep things under control by diet, that is the way to go. Perhaps someday I will be able to say that I am also contolling things with diet. I hope so.

Marion
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Deanna in CO
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Post by Deanna in CO »

Cindy,

I too have a bottle of Entocort sitting in the back of my cabinet untouched. I'm not fortunate enough to have no symptoms, but mine have improved being on the diet (GF, DF, mostly egg and soy free, and all the other stuff). I like being able to tell when I'm reacting - and when I know I didn't react to something - and from what I've read Entocort interferes with that. I also prefer to avoid any potential side effects. So for now I'm staying off it, but keeping the option open if I should need it.

Deanna
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