Hi, here is a question I would be embarrassed to ask anywhere else but here.........
My EnteroLab test kit finally arrived a couple of days ago (about 10 days by first class post from USA to Hong Kong). This morning I collected the sample. The instructions say to capture one complete BM. Which is what I have done (it was a "soft scoop" style MB). I would say it filled up about 25% of the container. Is that enough? It is now in the freezer and I am planning to fedex it next Monday morning, but I want to make sure they have enough for testing. Does anyone have the scoop (pun intended) on this?
By the way, I decided to up the challenge a bit in the last few days before collecting my sample by including gluten and more diary in my diet. I am pretty sure (due to some mild gurgling, gas, softer BMs and even one or to loose but not watery BMs) that, had I not been on 3 Entocort a day, I would have gone into a D flare as a result). I will therefore be very surprised if the tests do not confirm that I am sensitive to Gluten and Diary. Now I have collected, I am back on to GF, DF and SF and hopefully an improvement in healing process.....enough of self inflicted challenges I think!
I remember reading somewhere in their literature that you needed about 1/2 cup for the sample, so most likely you have enough . . . .no need for a double or triple scoop
Oh, I wish you hadn't added gluten back for the test - it wasn't necesary. Hope it didn't give you a setback.
Thanks, it was about a full normal coffee cup size. So should be ok.
You are soooo right to have wished I had not tested myself with gluten. Since my last post, I just had D. and I can sense that my stomach is a little less stable than last week...I hope this is just a one off....
But the good news is that now when I next see my GI doc (next Monday) I can look him in the eye and say that I am certain that diet has an effect not just Entocort. (since I have been getting better and then declined sligtly while all the time staying on the 3 pill dose of Entocort.)
In the last conversation I had with him 3 weeks ago I said I was trying a GF, DF, SF diet as well as taking Entocort and he said fine but "do not restrict yourselves too much". Well, now "we know" what happens if "I do not restrict myself too much" and I can justify my decisions to go ahead with EntroLab tests without messing up my relationship with him. (I plan to tell him about doing the tests when I see him). I need to keep my relationship with him smooth because the next thing I will likely need to "negotiate" with him is to stay on Entocort for longer then the standard two months. My little self-test should help provide an argument for that too.
It's always a crap shoot when determining how much information to share with your G.I. doc. Mine is not on board with the diet approach to remission for M.C. Had to fight to just get a prescription for Entocort (had to show him a trial report from the Journal of Gastroenterology) I am not looking foreword to trying to have my prescription extended beyond the trial length.
Some times I think that he does not want to "cure me" because He would loose me as a patient and the income that I represent. I know that that's an awful thing to say but, it has crossed my mind.
Instead of telling him that you are on a restricted diet. Ask him his opinion of that type of treatment. if he seems open minded then go for it. If he says it has no effect then it might be better to keep your information to yourself. This is only my opinion though. YMMV Good luck!!
FWIW, I agree with your advice on approaching the subject of diet with a GI doc.
If your GI doc won't renew your prescription for Entocort, try your GP. Many members have gone that route. Once you have an official diagnosis of an IBD on your record, most GPs won't hesitate to prescribe Entocort, if a "regular" patient requests it, especially if the patient has ever had a script for Entocort from their GI doc.
So how are you doing these days?
Tex
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.
Thanks for your post. Sounds like I am lucky enough to have a better GI doc than you. (e.g. after not succeeding with Pepto B, he put me on Entocort without any prompting). I am hoping he will be open minded when I tell him how I have reacted to being off- and on- gluten. I will take your advice and ask what he thinks about that first and gauge his response, before jumping in with the EnteroLab test.
I, like you, do not want to be cynical, but it is ridiculous we even have to think about playing such games to ensure no stone is left unturned in the search for a way to heal. As far as I can see there is no medical risk in going on a GF, DF, SF diet (in fact the contrary) and there is no risk in checking out the EnteroLan tests. So why would this not be encouraged. There are costs but that is up to me to pay.
I wish you all the best in getting your prescription extended. Let me know how it goes.
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.
Well after reading your posts regarding your numbness, b.p. and other seemingly non related medical issues........I'm doing pretty damn good. Thanks for asking.
I'm glad you are feeling better. The fact that you can't get a definitive diagnosis is troublesome. It's like that intermittent car problem that we have all experienced, that goes away when we try to show it to the mechanic. My hope is that your doctors have overlooked something and that time will present the true nature of your reactions. The urination problem is also very strange.
I took 9mg of Entocort for 4 weeks, 6mg for 4 weeks and then tried to go to 3mg. My body did not like that. After 3 days my bm's started to get loose and I felt like I had to go all the time. So back to 6mg. I am going to try to alternate days of 6 and 3mg next. My prescription runs out in 3 weeks so I'm going to call my gi doc soon to ask for an extension. I know my PCP will not do it. She looked in her "book" and said that Entocort was only approved for Chron's and U.C. So she could not give me a prescription.
Sorry that your body is balking at the dose reduction. There probably is some little item preventing you from achieving remission, but as we all know, figuring out exactly what it might be, can sometimes be a full time career.
I think that your PCP is full of you-know-what. Many/most drugs can be prescribed off label, especially if there is evidence that it can be beneficial for the patient, (and there is certainly plenty of evidence that Entocort EC can be beneficial for patients with MC). There are certain drugs for which this is not an option, and certain drugs even require special training and certification before they can be prescribed for any purpose, whether on or off label, (such as some of the anti-TNF drugs, and possibly one or two of the other powerful immune suppressant drugs), but to the best of my knowledge, Entocort EC is not one of those drugs. Your doc is apparently overcautious, (scared to death of getting into trouble), or ignorant, (or maybe she's already in trouble with the state Board of Medical Examiners). Most likely, she is just extremely unfamiliar with MC, and afraid of addressing something that she is unfamiliar with, (and she is unwilling to learn more about it). The fact that she even felt obligated to "look in her book" sort of says it all. That suggests that she has never prescribed it, and probably knows nothing about it. That's sad.
Tex
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.
I think you hit the nail on the head with respect to my PCP. She is unwilling to take the responsibility of any negative consequences of a steroid drug unless it is strictly an "approved" drug. (insurance and legal issues no doubt)
She is young and I am a new patient of hers. My pcp of 13 years is no longer accepting my HMO provider so I had to look elsewhere for my care. OH well, luck of the draw in play here. I'm hoping that my GI Doc. will extend my prescription. He will probably want another office visit from me. ( I think his Mercedes payment is due about now LOL)
When I asked my PCP for a renewal of Entocort, he said "I think I'll let your GI deal with your MC." So much for him helping.
Tex,
I'm glad you're feeling almost back to normal. What an ordeal for you. You must have been (still are) worried sick. I hope you soon find out what happened.
Gloria
You never know what you can do until you have to do it.
Hotrod,
Maybe you could carry a copy of the article on Entecort with you for your PCP.
That should be sufficient documentation for her, and it would probably help other patients. Journal of Gastroenterology is a journal taken by GI's, usually, so there may not have been anything written up in the journals which she reads.
Also, sometimes when you are off a medication, and things go south, you may be able to call back and get a refill due to that fact alone, particularly when it was definitely helping you in the past.
Let's just hope that you'll get that diet perfect and that your gut will heal right away, so you can stay off the medication.
Do you suspect any further foods might be a problem? Dr. Fine's doesn't have tests for all the foods, so a few people here have had to remove a few other things by trial and error. Hopefully, you won't have to go that route.
Perhaps for the time being you should just keep on with what you are doing. Maybe you just need a little more time. Sometimes it is easier to catch something one shouldn't have eaten while not masking with medication. Being off the medication MIGHT just speed up your awareness of how different foods are affecting you -- just a thought.
Further foods may be a problem for me. Right now it is nice to have my life back while on Entocort. I'm following a pretty strict diet. In addition to the intolerances identified by my Enterolab results, I don't eat lagooms, raw vegetables or cooked vegetables other that brockley, spinach and asparagus. I have researched all my supplements and vitamins for intolerances as well. I pretty much follow the advice from Gloria as to what is not acceptable to eat. My only questionable food now is sun flower butter. (o.k. with Gloria)
I started this diet a year ago and have been on Entocort for about 3 months. I think I will need more time before I can ween off Entocort entirely.
I totally agree with your statement that medications mask the effects of our irritants / intolerances. This has been discussed in this forum to some degree before. I like Gloria's approach where she takes minimum medication while eliminating suspected irritants. I don't think that we can figure this out if we are having explosives d all the time. We need to stabilize our gut before we can determine all of our irritants. At least that is the way I see it. YMMV
I am going to try to wean down to 3 mg of Entocort and then see if I can identify any further irritants. Any advice would be appreciated, as always.
....
and I can sense that my stomach is a little less stable than last week...I hope this is just a one off.... 
My little self-test should help provide an argument for that too. 
