I've been a member of this board for five months now. I wonder what my life would be like if I had only doctors to help me through this. I wonder how many more tests and medications I would have subjected myself to. How would I have learned that all of my decades of GI problems are related and would improve - and they have. I certainly know that the buckets of pills I was prescribed only made matters worse!
From what I can see, the help I needed doesn't exist in the medical world yet. There are new studies surfacing right now indicating how damaging non-celiac gluten sensitivities can be but clear direction will come late for those of us who are struggling NOW.
The support of others has made a world of difference for me.
Things Would Be More Difficult For Me Without This Board
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Well said DJ. By the time I found this board I had given up on the notion that doctors could help me. All they had managed to do was drain my pocketbook. Also by the time I found this board a lifetime of gastrointestinal problems had turned into symptoms so severe that I was housebound if not bathroom bound. This board gave me my life back and I will be forever grateful. I don't even have a diagnosis of MC because I didn't see the point of going back to a doctor and getting a colonoscopy. I simply instituted dietary changes and had the Enterolab testing. This forum saved me from a life of misery.
Jean
Jean
I totally get it, Jean. I've had many colonoscopies and gastroscopies with accompanying anesthesia and associated risks and my doctor initially thought I should return for ANOTHER colonoscopy three months after my MC diagnosis to learn if the MC had cleared up. What difference would it make? None! The course would still be the same. As I've mentioned on other occasions, my doctor recently attended training on MC and related topics and has not mentioned a repeat colonoscopy since. In defense of my doctor, I feel that she is interested in my recovery, is helpful in whatever way she can be, and she supports my path.
With the limited information the medical field has to offer, my path to recovery is best found on this board. Not only have I found a path to stabilizing my health, I am also among people who help me stay on track!
DJ
With the limited information the medical field has to offer, my path to recovery is best found on this board. Not only have I found a path to stabilizing my health, I am also among people who help me stay on track!
DJ
Me too DJ. I found this board the same day I had my colonoscopy. When I woke up the surgeon said to me "I suspect you have lymphopathic colitis, because everything looked good...just based on your symptoms. I took biopsies and those will confirm it". Thank God for him! My husband drove me home, I headed to bed, grabbed my laptop and found this site. I went gluten free that afternoon knowing that if this many people found remission that way, why would I be any different? I had already stopped dairy. My GP started me on prednisone then about 4 weeks later I started Entocort. Several weeks later I dropped soy. The rest is history.
Although my GI doc told me she believed diet definitely plays a role in MC, I think without this site I would have gone through the cycle of flaring as soon as I stopped Entocort, getting back on Entocort and either staying on it or continuing to be off and on. Before my GI doc cut me loose she said "I'm just so impressed with your progress", so I'm thinking it wasn't typical. She was very open to what I was doing, loved the poop and food log I kept, looked at research I brought and wanted to see this site.
But this site gives us clarity and direction and someone knowledgeable to talk to day or night, who is also living with this disease. That simply can't be beat.
C.
Although my GI doc told me she believed diet definitely plays a role in MC, I think without this site I would have gone through the cycle of flaring as soon as I stopped Entocort, getting back on Entocort and either staying on it or continuing to be off and on. Before my GI doc cut me loose she said "I'm just so impressed with your progress", so I'm thinking it wasn't typical. She was very open to what I was doing, loved the poop and food log I kept, looked at research I brought and wanted to see this site.
But this site gives us clarity and direction and someone knowledgeable to talk to day or night, who is also living with this disease. That simply can't be beat.
C.
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I spent years trying to figure this out on my own and ended up making things worse. I did not start making progress until I came here. Everyone has always been very respectful, non-judgemental, and genuinely concerned for my well being. I've noticed not all support groups are like that. I had no idea CC fit under the umbrella of MC so all my internet searches using CC were very generic. I wish my GI would have referred me here......I could have avoided some very difficult hurdles had I not spent over four years going down hill. At least when I was dx with thyroid cancer my endo gave me a card and brochure to the ThyCa website and support group that gave me tons of useful information.Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
DJ
like carol, i found this forum within 24 hours of getting my Dx, I followed the path of the majority and attained pretty good management of the MC within 9 months
for me, finding this site, and all these wonderful people was like a HUGE hug.
All the symptoms that had been occurring for 5-10 years now made sense; there were others who had had digestion issues and other niggly health issues for most of their life; and I found many like minded people who have become friends;
and that I was diagnosed in an era that has google, and world wide internet so i could easily access information that would enhance my wellness.
like carol, i found this forum within 24 hours of getting my Dx, I followed the path of the majority and attained pretty good management of the MC within 9 months
for me, finding this site, and all these wonderful people was like a HUGE hug.
All the symptoms that had been occurring for 5-10 years now made sense; there were others who had had digestion issues and other niggly health issues for most of their life; and I found many like minded people who have become friends;
and that I was diagnosed in an era that has google, and world wide internet so i could easily access information that would enhance my wellness.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
things would be more difficult...
Hey Friends,
Not wanting to be redundant, I echo all of your feelings!
Monique
Not wanting to be redundant, I echo all of your feelings!
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania