A Message From The Past

PJ · Post by PJ » Fri Oct 26, 2012 6:30 pm

Interesting how we all have different reactions to Pepto. After my MC Dx in August, I immediately went GF, DF, SF, EF and started the Pepto regimen as recommended. I never used it for the 7 1/2 years of undiagnosed MC and constant bouts of WD; rather, I always turned to my friend, Immodium. In any case, I had zero symptom relief for a month of Pepto therapy and was so dehydrated from the WD that I nearly had to be hospitalized. When the budesonide arrived, I took the 3 pills and the gurgling and impending doom of another WD attack stopped immediately. I haven't even had a grumble until I reduced it down to 2 pills. I know the budesonide is only a short term solution to temporarily halt the WD, but I definitely need time for my gut to heal with the new diet and probiotics to kick in.

Thanks for posting Dr. Fine's update, Tex. I truly appreciate all you do for us.

Cheers,

Pam

grannyh · Post by **grannyh** » Fri Oct 26, 2012 6:36 pm

For me, entocort was not short term.. took it for about 6 years.. until I finally weaned off of it. Tank heavens for insurance that made it possible for me to keep taking entocort.
grannyh

tlras · Post by **tlras** » Fri Oct 26, 2012 8:29 pm

Hi Pam,

I was just diagnosed shortly before you were. I'm sorry that the Pepto didn't work for you. Glad you found something that did. And you can take that a lot longer than the Pepto. I can't imagine having to go into the hospital for dehydration.....sorry you had to go through that. This is such a nasty, hard to control disease.

@Grannyh...how long have you been off the Entocort? Just curious. I'm still kinda new here. What do you eat now? I read an old post of yours the other day that had me cracking up. Still browsing the forum.....so much information.

Terri

grannyh · Post by **grannyh** » Fri Oct 26, 2012 8:40 pm

Terri,
Other than having to take entocort for a couple of days a couple of times.. I have been in remission for two years.

I eat anything I want to eat.. in moderation. If I try anything new that gives me a problem, I don't eat it again:) If something I usually eat.. gives me any discomfort.. I wait awhile before I try it again.

I was hospitalized several times for dehydration.. before and after diagnosis and they always tried to get me to admit to being an alchoholic or drug addict.. since they were sure I was going thru withdrawal from one or the other. Granted I looked horrid by the time I ended up in hospital and hubby looked great when he checked me in.. they figured he was such a saint to put up with an addict! He would try to explain.. but they thought he was in denial... sigh..

grannyh

Sheila · Post by **Sheila** » Sat Oct 27, 2012 7:26 pm

Tex, is there a way to access Judy Malinowski's old site? It helped me get my mother tested by Enterolab and a diagnosis of CC. I bought your book and downloaded it to my kindle before you reformatted and the link doesn't work.

Thanks, Sheila W

Post by **tex** » Sat Oct 27, 2012 8:20 pm

Hi Sheila,

I'm not sure if there's a way to download a corrected version from Kindle or not. Kindle uses the MOBI format for their digital readers. Most other brands of digital readers use the EPUB format, but Sony uses a different format. I'll send you an email and attach the corrected file. Don't ask me how to install it on your Kindle, though, because I don't have one. Kindle uses a protected version, which makes installation more difficult. The one I send will be unlocked, so it should be easier to install.

Or do you use an iPad, or a Nook, or some other type of digital reader? If you'll tell me what type you have, I'll send the proper format.

In the meantime, here's a link to Judy's old CC/MC Club archives. When the page opens, just click on the Newsletter Archives link and you will be able to select any of the newsletters to read. I believe they are all there, but I don't know that for a fact, since I wasn't a member back when her LISTSERV was still active.

http://web.archive.org/web/200305060159 ... olitis.htm

The newsletters that are available go from August, 1995 to February, 2003

You're most welcome,
Tex

Sheila · Post by **Sheila** » Sun Oct 28, 2012 6:32 am

Thanks, Tex. I originally downloaded your book to my Kindle. When I got an ipad I was able to transfer the book to the ipad but it is the same format as on the original Kindle. I did find the instructions on re-downloading but couldn't get it to work. I will bookmark the website for the blog and hope I can find what I'm looking for.

My youngest son is showing all the signs of MC and is resistant to trying gluten free. He KNOWS he needs to do it but the symptoms aren't quite bad enough to force the issue. He doesn't cook at all and, as we all know, eating out is very tough. I'm hoping his girlfriend, hopefully soon to be wife, is willing to cook gluten free. All of the information I can present to both of them about MC and what his grandmother and mother have gone through should help him to make the GF decision.

Sheila W

Post by **tex** » Sun Oct 28, 2012 8:44 am

Hi Sheila,

I just sent you an email with some attached files — the "epub" file is for your iPad and the "mobi" file is for your Kindle. If either or both don't work correctly on the respective devices, please let me know.

Good luck with trying to convince your son to change his diet. I have a similar problem with a family member. Unless the symptoms are debilitating, no one seems to be interested in serious diet changes. They would rather put up with the symptoms than change their diet.

Tex

grannyh · Post by **grannyh** » Sun Oct 28, 2012 9:07 am

Getting someone else to change their diet... is like getting most doctors to understand microscopic colitis.

Reminds me a saying my hubby is fond of.
Never try to teach a pig to sing.
It just frustrates you
and irritates the pig.
grannyh

Sheila · Post by **Sheila** » Sun Oct 28, 2012 7:26 pm

Hi Tex,
I didn't find an email from you in my aol mailbox. Did you send it there?
Sheila W

Post by **tex** » Sun Oct 28, 2012 8:45 pm

Hi Sheila,

Yes, I sent it to the address listed in your profile, which is an AOL address.

Since it contains two (actually, three) attachments, I'm sure that AOL's spam filter kicked it out of your mailbox.

Is there a way that you can access AOL's spam file to search for it? Or is there another address where I can send you the files? Unfortunately, I can't send attachments with a PM. At one time I considered adding that capability to the board, but it required an incredibly huge amount of code additions and changes, so I dropped that idea, since adding/changing that much code is asking for trouble (it only takes one character out of place to bring the whole works to a screeching halt).

I suppose I could send them to you on a CD, if there's no way to get past the AOL bottleneck.

Tex

Sheila · Post by **Sheila** » Mon Oct 29, 2012 6:23 am

Hi Tex, Yes, the aol spam filter is pretty effective. I looked through the filter and your e-mail was not there.

I have a gmail account that is the same address except for "gmail" instead of "aol". I am sorry to bother you with this. I have the most important part of the book, your written content, and I can do without the rest of it.

Thanks, Sheila W

Post by **tex** » Mon Oct 29, 2012 9:09 am

Sheila,

The updated version is so much easier to use, because the links work and the unnecessary blank spaces are removed. I'll try sending the files to your gmail address. Surely that will work.

I appreciate your patience,
Tex