Unbelievable coincidence

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

Post Reply
m
Gentoo Penguin
Gentoo Penguin
Posts: 264
Joined: Mon May 30, 2005 4:57 pm

Unbelievable coincidence

Post by m »

One of the people I work with was just recently diagnosed with MC! Can you believe it? Her doctor has told her to do the usual - add fiber, stay way from caffeine, yada yada yada. I gently told her that she should go ahead and try it but not to be too surprised if it doesn't work or even makes it worse. I also told her to skip the other meds and go straight to Entocort. She's aware of my diet restrictions but I don't think she's mentally ready to consider that as a "treatment."
m
User avatar
Peggy
Moderator
Moderator
Posts: 1844
Joined: Wed May 25, 2005 8:13 am
Location: Vancouver, BC Canada

Post by Peggy »

Just my humble opinion here, but if something like Asacol works why suggest she try a steroid (mild as it is, compared to others anyway)?

Luv
Peg
:pigtail:
harvest_table
Rockhopper Penguin
Rockhopper Penguin
Posts: 1509
Joined: Wed May 25, 2005 6:29 pm
Location: Fergus Falls, Minnesota

Post by harvest_table »

Whoa, what are the odds of that?

Be sure to tell her about the board m! It's an invaluable resource to network with others who have MC and cycle through what options we have. That would in fact, be the best advice I think you can give your co-worker at this point.

Love,
Joanna
Jean
Moderator
Moderator
Posts: 510
Joined: Mon Jun 20, 2005 5:55 pm
Location: Okemos, Michigan

Post by Jean »

m,

Wow! Considering that one in 250,000 people have MC (or are diagnosed with it) the coincidence is unbelievable! I figure 3 people in Lansing have it.

By all means, let her know about this board. I don't think any of us were ready to hear about the diet right away. I know it took me a month, and a month is a long time when you're running to the bathroom 15 times a day.

Football season is just around the corner!

Love, Jean
Be kind to everyone, because you never know what battles they are fighting.
Polly
Moderator
Moderator
Posts: 5185
Joined: Wed May 25, 2005 3:34 am
Location: Maryland

Post by Polly »

WOW, Melissa!

That is amazing! I think she is very lucky to know you. I hope we meet her on the board.

Love,

Polly

P.S. Nice photo, Peg!
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
User avatar
tex
Site Admin
Site Admin
Posts: 35071
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Maybe this is a gender thing, but I had been sick off and on, (getting progressivly worse), for about a year, and had been through every GI test that the local clinic offered, and had been told that there was nothing wrong with me. 14 months later, (August 18th, 2001), while I was sitting in my vehicle, (with the seat reclined part way, to ease the pressure on my bloated gut, because I was pretty sick that day, and had to quit working for a while), I was reading the Wall Street Journal, when I came across an article about a new camera that could be swallowed to record it's passage through the GI system. The article mentioned that it was handy for diagnosing celiac sprue. I thought, "What the heck is celiac sprue?"

When I got home that evening, I looked it up on the net, (hey, I was totally ignorant about this stuff back in those days), and I immediately noticed the symptom match. When the sun came up the next morning, I was 100% GF. I wanted relief! To be honest, I never even considered "thinking about it a while". Doesn't that sound like a gender issue?

It took almost a year and a half, (til late January of 2003), before I figured out the rest of my intolerances, and stopped getting sick regularly, but up until that point, I never considered giving up the diet, just because I was still getting sick occasionally. If cutting out the other items, (corn and dairy), hadn't brought remission, I might have given up the diet after a while, but that soon became a moot point, when I stopped getting sick, (except for slip-ups).

A few months later, about the 20th of June, I found Sally's board, after I came across the term "collagenous colitis", in an article I was reading while trying to figure out why I had all those other intolerances, if I was a celiac. Bingo! Everyone there was just like me--it was truly an epiphany for me. Two weeks later, (on July 4th), I finally got up the nerve to post.

So here I sit, suddenly having trouble typing, because the tears are welling up in my eyes as I recall the indescribable joy of finding a family that I didn't even know existed. That was truely an awesome event for me.

Okay, so the tears are not gender specific, but I strongly suspect that the tendency to just jump right into the GF diet without hesitation may be a male thing. Or am I wrong? Maybe it's a personality trait characteristic of certain personality types. I really wonder why some of us jump right in without a second thought, while others find it totally unpalatable, and unacceptable.

We are truly a diverse group, but there has to be a logical reason why we have such varied, (and such intense), attitudes about the diet. Obviously, everyone has good reason for their personal approach, or they wouldn't feel the way they do. I suspect it's something that we may not have much control over. IOW, it's a part of our personality, that we may not be able to change, even if we want to.

Love,
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.
Sally
Rockhopper Penguin
Rockhopper Penguin
Posts: 885
Joined: Sat Jun 18, 2005 3:22 pm
Location: Wilsonville, Oregon

Post by Sally »

Thank you, Wayne, for your lovely thoughtful letter. And an special thank you for taking over this Board. I just couldn't do it anymore the way things were going. This is such a peaceful haven to come to everyday and you'll never know how much I appreciate it.

Lots of love,

Sally
Mitakuye oyasin
(Lakota for "We are all related")
:earth:
cludwig
Rockhopper Penguin
Rockhopper Penguin
Posts: 647
Joined: Mon May 15, 2006 9:52 pm
Location: Seattle

Post by cludwig »

Hi Tex,

I'm thinking it's a personality type because I was the same way. I had been so sick for months..was having moments when I was wondering if there was a way "out" without hurting my family (luckily for me I was in such a deep brain fog I couldn't come up with a way). Then I stumbled on Dr. Fines' website and immediately went gf....even tho I'd insisted many times in the past to be tested for celiac disease....and the tests always came back negative. I'd go to bed with a print out of the testimonials from his site, pray, and cry myself to sleep. Then I found you guys..I felt like I had won the lottery. My husband had gotten to the point where he would only let me search the web for an hour a day as I would end up crying reading about how there was nothing to do for MC...except wait for a remmission...which may or may not come. So when I was crying after I found you guys, I had to explain to my husband that they were tears of hope now and that it was okay.

Without you all of you I don't know if I could mentally take all the ups and downs of this "crap". Thank you thank you thank you.

Love,
Cristi
starfire
Moderator
Moderator
Posts: 5198
Joined: Wed May 25, 2005 5:48 am
Location: Pennsylvania

Post by starfire »

:grin: Talk about tears in eyes..............Here I sit. Your posts were so moving. I don't know what I would have done without you guys either. It certainly made it more tolerable knowing what was happening (and likely to happen). I was lucky.........I had a diagnosis quickly.........I found you guys before I got a diagnosis (I asked what the biopsies were for and was told Microscopic colitis). I immediately started looking MC up on the net and found this wonderful family.

Thank you all!!

Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
harvest_table
Rockhopper Penguin
Rockhopper Penguin
Posts: 1509
Joined: Wed May 25, 2005 6:29 pm
Location: Fergus Falls, Minnesota

Post by harvest_table »

Ah Shucks...I'm :cry: too!

I also consider myself very fortunate to have found Sally's board right after my DX. What a relief to find others with MC. Although I noticed folks talking about diet I kept the blinders on and cycled through the med route (with your help) and since nothing worked for me that I was comfortable taking long term I deduced, (with your help) that diet was my only saving grace. It took me about 5 months to reach that conclusion.

Asacol was the first med prescribed by my GI and I often wonder if that had worked for me where I would be at in my recovery today. I mean, wouldn't we all really rather take a harmless pill than follow a retrictive diet?

Also, just for the record: It has been mentioned time and again by some folks that will remain nameless that this board tends to be too pushy about dieting. In the 28 months I've been hanging around here I have never felt that to be the case- at all.

It is indeed a FACT that MC'rs have sensitivities to gluten- period. It is also an unfortunate FACT that many of us have other sensitivities- period. So if you can't find a med that works for you that your comfortable with taking long term the glaring obvious thing is to address ones diet- period.

Okay, off my soapbox now. :oops:

Love,
Joanna
m
Gentoo Penguin
Gentoo Penguin
Posts: 264
Joined: Mon May 30, 2005 4:57 pm

Post by m »

The reason I say my coworker is not ready for considering a diet change is because I know her and her other medical problems. She tends toward denial. I will offer gentle support but will not push her in any one direction. It's also a little awkward since I'm her boss.
m
Jean
Moderator
Moderator
Posts: 510
Joined: Mon Jun 20, 2005 5:55 pm
Location: Okemos, Michigan

Post by Jean »

m,

Maybe some of her other medical problems will be solved by going gluten free. Regardless, this is still a great site no matter how you decide to manage your MC. Tell her we're looking forward to meeting her, and if we don't, I'm coming to your museum and plugging up all of the toilets, LOL!

I remember that I read everything I could on GI disorders and not one of them was what I had. When my GI called and said I had MC, I punched out of work and immediately went online. I think Sally's site was the first that I found. I was so excited to read the description of all of my symptoms. Within a day I was on the board. It took me a month to decide to go GF. My doc had only prescribed Asocol and to see him in 6 weeks, so I thought I should listen to him. Oh yeah, back then I listened to doctors. After a few weeks with no results from the Asocol, I decided to go GF and I never looked back.

I never could have done this without all of you. I probably never would have found the gluten link or how to go about eliminating it. I may never have figured out that I was multiple intolerant either without the stealth work of those who came before me!

:grouphug: Love, Jean
Be kind to everyone, because you never know what battles they are fighting.
Post Reply

Return to “Main Message Board”