Never thought I would be delighted to be diagnosed with LC!!

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olivermb
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Never thought I would be delighted to be diagnosed with LC!!

Post by olivermb »

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tex
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Post by tex »

Hi Mary,

That's good news that it wasn't UC. It's certainly possible that you might have a "light" case (whatever that is), but please be aware that your doctor is confused, because research proves that there is no correlation between the markers of an inflammatory bowel disease and the severity of clinical symptoms, so there is no way that he could tell whether or not you have a "light" case. Only you can determine that.

As you have already discovered, most GI specialists know so little about this disease that they feel very insecure about it and they typically become quite defensive when they encounter a patient who seems to know more about the disease than they do.

Bismuth sybsalicylate turns "everything" black. I'm not aware of a way to prevent or remedy that. If you want Entocort (budesonide) for the trip to China, you can order generic budesonide (Budez CR) from a pharmacy in India without a prescription. Shipping takes up to 3 weeks, though, since it has to go through Customs, but ordering it promptly is probably the only way that you will have it before your trip (assuming that your departure is not sooner than that). A 90-day supply (the largest amount that you can legally order at one time), costs $121.50 plus shipping. An equivalent product in the U.S. costs between 30 and 40 times that amount. And yes, it works as well as the high-priced name brand stuff.

https://www.alldaychemist.com/1447-budez-cr-3mg.html

Good luck with your treatment.

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.
olivermb
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Post by olivermb »

Hi Tex,

Thank you!! Yes, I think I'm going to go ahead and order the Entocort. I totally know that this will hack off this GI, and I'll give it a couple of weeks on the PB to see, but I need to have a back-up plan, I think.

I don't know what the initial dosage should be since I would be doing this on my own. If people have strategies, please do let me know.

Right now I actually have a very dear friend in India who may be able to help me get the ball rolling a little faster...

Any other suggestions are much appreciated. Today when I was in my local health store, I was SO HAPPY to think off all of the resources that are available now. And in Wegman's too.

Thanks everyone, and again, all insights, suggestions, etc. for a newbie are more than welcome!!!

Warmly,

Mary
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tex
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Post by tex »

I wouldn't tell him what I was doing, because he would probably become irrational. Who knows -- the Pepto may work just fine, and you won't even need the Budez, but it's cheap insurance, in case you need it to prevent your symptoms from getting out of hand on an important trip.

If you need to use it, the labeled starting dosage for budesonide is 3 - 3mg capsules per day, taken first thing in the morning.

Tex
: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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Post by Leah »

Well mary, at least you know what you are dealing with. Like Tex said, I don't understand the "light case" thing, but your symptoms will tell you how light a case you have. Maybe when you come back from China, you can think of doing the Enterolab testing to tell you exactly what you shouldn't be eating. Seems like you should stay away from dairy.

I hope that your trip goes smoothly and that you only need to use the PB, but if you do have to start on the Entocort, please know that you shouldn't just start it and then stop. It needs to be slowly weened out of your system.

Good luck
Leah
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Post by MaggieRedwings »

Good luck on your trip and follow what you think is best. Light Case? GI without a clue.

Love, Maggie
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CathyMe.
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Re: Never thought I would be delighted to be diagnosed with

Post by CathyMe. »

olivermb wrote:Hi All,

FINALLY got the call from my GI this morning to tell me that I have mild LC. I have been SOOOOO worried about this, as the colonoscopy was potentially scary for UC. Scared, scared, scared. He said it was mild, and I have to hope so. Tex, you were absolutely spot on right on the money.

I also have been off Zoloft now for about 15 days, so I'm hoping that ultimately it might have been medically induced. Any idea of how long it would take to go away if it was the Zoloft? Would it go away suddenly (hasn't happened) or slowly (kind of happening).

I want to thank everyone for the good vibes, and thank you in advance your advice I know I'll be following in the future. You all are trail blazers.

Leading up to this diagnosis I had found that PB was very effective in stopping my sypmtoms. I haven't taken it for the last several days, and things seemed to be improving little by little, but my body doesn't seem to like lactose AT ALL.

So I know that this won't come as a big surprise to anyone, but my doctor recommended that I do the pepto bismol treatment. He knows I'm headed to China soon, but he though this might work. I asked him to give me Endocort to get me through this period, and he made a snide remark that I'm already familiar with the drugs for this even though I just learned about the diagnosis. He seems a little miffed that I'm a high information seeker. Predictably, he also said I could get tested for celiac disease.

Anyhow, that's where I'm at right now. Scare but relieved at the same time if that's possible. Don't know what to think about China and if PB is going to help me make it through that time.

Also, any suggestions on how to minimize the black-tongue effect? Does brushing my tongue several times a day help?

Thank you!!!

Warmly,

Mary
Your GI must be a colleague of mine, LOL!! Mine too, told me my case was "mild" even though I was experiencing 15-16 bouts of explosive WD, could not leave the house, almost lost my job, etc.....PB did not work @ all for me, neither did immodium. I hope you find some relief! I could not even think about traveling when I was @ my worst and have since gone to Mexico and other places but I had my diet and symptoms under control.
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Post by Gabes-Apg »

Mary
hope you are feeling better after your scope and confirmed diagnosis.

For your trip to China, where abouts are you travelling? Shanghai?

the company i work for, we have a chinese born gent, who spends half of his time in Australia and half his time in China.
If you want any information on particular cities or Chef cards or other items translated, he would be more than happy to do it for me.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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