Hello, This is all new to me - joining a support group!

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

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tex
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Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Jenny,

I didn't get a chance to welcome you when you joined, (due to a little unpleasantness going on with my colon, at the hospital), so :welcome:

My guess would be that the test kit is hung in customs at the UK port of entry. I recently imported a PDA/phone from Cloves, in the UK, and it took about two weeks to receive it, despite using the fastest shipping method I could find. All but a few days of that time was spent while it sat in customs, waiting for someone to process it.

Once you get the sample back to the lab, you will be able to receive your test results by e-mail, so that will save having to wait for a letter to get through the mails, at least.

Again, welcome aboard, and good luck with the test.

Tex (Wayne)
:cowboy:

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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Polly
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Joined: Wed May 25, 2005 3:34 am
Location: Maryland

Post by Polly »

Hi Jenny,

I agree with Shirley and Dee.

Of course it makes sense to remain longer on the Entocort, especially if the next med. the doc plans to use is more powerful than the Entocort. What is it, BTW? Good for you for going GF and DF - hopefully you will begin to see some improvement even before you get your test results back. Don't be surprised if your doc tells you to forget diet because it won't work. WRONG....as we here can attest. :wink:
We have even had folks who improved markedly on diet and were told by their docs to stop it. Now why would anyone argue with success, do you suppose? Could it be those big GI egos? LOL!

Love,

Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Inconvenienced
Posts: 9
Joined: Thu Feb 04, 2010 6:19 am
Location: Pershore, Worcestershire

Post by Inconvenienced »

Hi Dee
I was very interested in your explanation as to how Entocort is released in the bowel and not into the bloodstream so much. It makes me happier about taking it, though it doesn't seem to be having much effect at the moment. My specialist did tell me that for every 500 patients he has with Ulcerative Colitis he will only have 7 with MC. And of those 7 the 'majority' will benefit in the 12 week Entocort course he gave me. I am now on the repeat course but gather it is of popular belief that it still will not be long enough?
I also favour getting to the root of the problem and treating the cause rather the symptoms and am still waiting for the testing kit to arrive. Apparently it's going to take 3-4 weeks to get here (so why I had to pay $25 for postage, I don't know - must be all that pigeon food!!)
In the meantime I am struggling with a gluten/dairy free diet and trying to avoid spicy food (which I find difficult). On the upside I did make gluten/dairy free pancakes yesterday and thoroughly enjoyed them.
Could anyone out there let me know if there is no improvement after the first 4 weeks on 9mg Entocort is there any point in continuing with it?
Thanks for your time

Love Jenny
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ant
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Joined: Sun Jun 28, 2009 11:59 pm

Post by ant »

Dear Jenny

If you have not already seen it you might find this string of posts useful to read. It provides a good debate on Entocort use.

http://www.perskyfarms.com/phpBB2/viewt ... t=entocort

Love, Ant
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Inconvenienced
Posts: 9
Joined: Thu Feb 04, 2010 6:19 am
Location: Pershore, Worcestershire

Post by Inconvenienced »

Thank you Tex for the info on Customs (I hadn't thought about that) and I hope that you are much better.

Hi Polly, The next lot of drugs the GI mentioned are Azothiaprine or Asacol/Pentas. I did mention to him that I had gone on a GF diet (didn't mention DF - too scared!) and he responded well saying that it was a good idea and that it wouldn't do any harm. So perhaps there is hope that he will be open to suggestions.

Dear Ant - My head hurts! :mallet: Thanks for the link, very interesting and I shall read it again later. I don't know if my brain can cope with all this new information I am having to learn. Onwards and upwards..............

Bye for now

Jenny
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harma
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Location: amman

Post by harma »

Hello Jenny, I see you live in the UK, I live in the Netherlands, so not so far from you. when I ordered the Enterolab testkit, it took about a week before it arrived. So no idea why in your case it takes up to four weeks. Like Tex is saying maybe hung in Customs, but for heaven seeks it are just an empty bowl and some pieces of paper in a box. And did you pay 25 dollar to get it sent to your home address? Or do I understand this wrong? Maybe new policy of enterolab To get it shipped to the Netherlands didn't cost me any extra (included in the test kit price). To send it bacc was not included cost me about a 100 dollars.

Hope your entocort is working again and you start to feel a bit better
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