Struggling....

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jillian357
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Post by jillian357 »

Afternoon guys and gals,

My appt with the gastro went better than expected, for the most part. He seems to think I'm in the middle of a bad flare, and gave me a 10 day course of Prednisone to settle it down. At this point he doesn't suspect gallbladder, but isn't going to rule it out either.
if after taking the Prednisone I'm not feeling 100% better I'm to go back in for more testing, probably at least another endoscopy. Fun.
He also said I'm rather rare in the fact that I'm not responding better to the full dose of Entocort.......lucky me I guess.

We chatted at length about running, and much to my surprise he fully supports me, and is willing to work with me. Perhaps we are finally getting familiar with one another, and he realizes how stubborn and passionate I am when it comes to running.
I feel a bit more optimistic than I did earlier this week. I just want this stomach pain to STOP, I've had enough! (ok...whining is over now. :grin: )

Hi Wayne!

First of all, thanks for the tip on the HIDA scan. I'll remember to ask if we delve into gallbladder issues more.

I LOVE to talk about running anytime, anywhere, so feel free to ask away! I'm proud of you for setting your 5k goal.....awesome! It's a great feeling when you cross that finish line, you'll see for yourself soon.
Thirty minutes for 3 miles is GREAT! I'me just starting my third year of running and am just now under a 10 minute mile....hence the Turtle icon. I'm slow but steady! :wink:

I've learned that everyone is VASTLY different when it comes to running....and don't compare yourself to other runners. You ARE a runner no matter how fast or slow you may think you are. You ARE an athlete when you are out there.
Take it at your own pace, and don't overtrain...most importantly, if you hurt yourself, STOP. I made the mistake of totally overtraining for my half marathon last year and almost didn't make it to the starting line. It's better to be a little undertrained than overtrained. Trust me on that one.

I don't know if you have ever heard of John Bingham a.k.a. The Penguin...but he's got some terrific books on running, especially for beginners. I followed his training plan for my half last year and will follow it again for a full this fall. I know he's got some plans listed in his books for 5k's as well.
Also, if you google C25k (couch to 5k) you'll find some great plans to follow as well. My friend followed that plan and had great success as well.

Again, I'm proud of you for getting out there running. It's a wonderful challenging sport. It's a bit tougher for you and I with our MC, but it can be done. Karen (moremuscle) gave me a lot of hope with her success, so believe me when I say you can do it!
I hope your MC is under better control than mine right now...but even when I am flaring like I am now, I'm still going to run. I have a one mile loop around my neighborhood that passes my house, and I'll repeat it 4-5 times just in case I need to make a pit stop. It's boring, but we do what we gotta do!

GOOD luck and keep me posted on your 5k!

Love,
Jill
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tex
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Post by tex »

Jill,

Good for your doc! It's great to have a doctor who understands, isn't it.

Since there is a risk of OD'ing on the corticosteroids, I hope that he either throttled back your max dose of Prednisone, or advised you to back off the Entocort for a few days, before starting the Prednisone. (The body builds up a residual level of the corticosteroids, and it takes a few days for it to degrade).

One of our members had a doc who ignored the fact that she was already taking Entocort, when he wrote a prescription for a back injury that she suffered while cleaning the garage, and she went through a life-threatening situation for a week or two. She now has to take pills for the rest of her life, to stabilize her blood pressure. I'm not exactly sure just what the statistics are, and that doesn't necessarily mean that it will happen to you, but it is something to be aware of.

Anyway, :thumbsup: on the appointment - he seems to have done a lot to improve your outlook, and that's a big help in itself. That's the way you should feel, after a trip to visit your doctor.

Love,
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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angy
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Post by angy »

Jillian, sorry if this post is a little late...and i hope your flare gets better soon, if it hasnt already.

I had the same problem over christmas and new year, had a huge flare up and i wasnt eating any bad stuff either...then i got the flu for a week then candida...im now slowly recovering..took a month..

take care xx
Angy ;)
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jillian357
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Post by jillian357 »

Morning Tex & Everyone!

Quick question---any idea on how long before I should be noticing an improvement with the Prednisone? I took 40 mg yesterday and 40 again today. As of this moment, NO change whatsoever.

I'm impatient, I know....I was just curious if there was a guideline on when I should expect things to calm down a bit. I should have asked the doc, but forgot.

thanks!

Love,
Jill
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Post by starfire »

Back when I was first diagnosed, Prednisone gave me almost immediate relief from the D. We are all different though, so I'm not sure if that was unusually fast. Also, I was diagnosed rather quickly compared to a lot of people here so that may have had some bearing on the med working so quickly with me. Perhaps not as much damage involved. I don't know......... just guessing.

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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tex
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Post by tex »

Hi Jill,

I believe that Shirley's experience is typical of a normal response to Prednisone. From what I've read here, most members get results within a day or two, (if it is going to work for them). Like other treatments, it doesn't work for everyone, unfortunately. Like budesonide, (Entocort), Prednisone is effective in about 60 to 70% of IBD cases, For a report on how well it worked for one member with a very difficult case, see this thread:

http://www.perskyfarms.com/phpBB2/viewt ... prednisone

Note that the reason why your doc started you out on 40 mg of Prednisone, (rather than 60 mg, as in Bob's case), is because you already have significant amount of budesonide in your system, so you probably have roughly the same level of corticosteroid in your bloodstream, as Bob did, at the start of his treatment.

When this treatment doesn't work, that of course raises the question, "Why?" Remember that both Prednisone and Entocort fight inflammation, but they have no anti-bacterial action, nor are they effective against any parasites, nor any other pathogens. If you don't start seeing some results after another day or so, it may be time to start looking for another cause of the D. I believe that I would begin by asking to be tested for C. diff, and if the test result is negative, I would ask for the test to be repeated with another stool sample, because C. diff culturing is notorious for false negative results. I would probably finish the course of Predinsone, though, before making a decision, as it's certainly not impossible that it could still work.

Love,
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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Liz
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Post by Liz »

Hello Jill,

I would give the popcorn a big miss. I can't eat corn in any form but when it is popped it really goes to towm, so you may be having the same sort of reaction. I don't know why your doctor would tell you that Lomotil is dangerous because I have been taking it for years & my doctor gives me plenty of repeats so that I always have it on hand.

Prednisone was very effective for me but I will never take it again because of the side effects. Entocourt is also good and has less side effects but very expensive here. I find that most of the time Lomotil & sometimes Gastrostop keeps me fairly ok so that I can get on with my life. after many years of constant D I now seem to have a flareup now & again which is usually fairly easily controlled.

Liz
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