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Crohn's Disease ForumsGeneral & SupportStruggling with this "tentative" diagnosis
09/05/2011 08:02 PM
lmoore
 
Posts: 6
New Member

Hiya. I am a 42 year old woman who recently switched primary doctors after 15 years because I didn't feel heard, regardless of test results. I was immediately heard and referred to a GI specialist.

The specialist said that I had textbook symptoms of Crohn's. She estimated that I've had it for 10+ years. She seemed very irritated at my original primary for sending me to an internist, and discounting the plethora of other symptoms (I hadn't had a solid bowel movement in over three years!!!!). She told me that, of course, I had strictures. I had to after being untreated for so long.

I am waiting on a referral from insurance for another colonoscopy. I need a test for a definitive diagnosis so I can get medicine to help.

I am utterly sick and tired of being sick and tired.

I am furious at my old doc for treating me like a headcase and a drug seeker for complaining of pain. All I want is better.

I am frightened of never feeling healthy again.

I've done a little research online. How discouraging.

Oy vey. How do I cope?

Reply

09/06/2011 12:08 AM  Top
starshine
starshine
 
Posts: 850
Senior Member

Cool Welcome to the crohns family! We will be here for you to listen and

exchange information. After years of living with crohns and the arthritis it gave me, I have learned the only way to deal with it all, is living in the moment...not dwelling on the past, or worrying about the future, but living in the "now"....This has become the only way, for me, that I can cope with all of the issues it brings..

Blessings


09/06/2011 05:47 AM  Top
kildare56
kildare56
 
Posts: 2667
VIP Member
I'm an Advocate

You will find that people such as my friend Starshine make a great support system too.
May I be guided to accept others who may differ from me and always separate opinion from fact. I insist that others put the benefit of the group before anything else, regardless of a well meaning agenda. If what you say is a fact, you can back it up. If not, it's opinion and should be called that. The safety of members is paramount.


Only our weaknesses give us real strength.
Only our failures grant us victories.

"When fascism comes to the United States, it will be wrapped in the flag and carrying a cross." Sinclair Lewis 1935

09/06/2011 06:45 AM  Top
lmoore
 
Posts: 6
New Member

I used to be teased about being so positive about EVERYTHING. I so want to be there again. Thanks for the encouraging words. It's hard to be the one who needs help and not be super mom/wife/friend. Today I believe I'll get to a place where I'm okay again.

What a humbling disease this is.

Good for the soul? Wink


09/06/2011 08:21 AM  Top
kildare56
kildare56
 
Posts: 2667
VIP Member
I'm an Advocate

You will be amazed at how quickly you become the one greeting others and assuring them. You will continue to be the super friend because you will have the perspective that lets others know you really do understand. It is more of a silver lining than you might think. This is an amazing community.
May I be guided to accept others who may differ from me and always separate opinion from fact. I insist that others put the benefit of the group before anything else, regardless of a well meaning agenda. If what you say is a fact, you can back it up. If not, it's opinion and should be called that. The safety of members is paramount.


Only our weaknesses give us real strength.
Only our failures grant us victories.

"When fascism comes to the United States, it will be wrapped in the flag and carrying a cross." Sinclair Lewis 1935

09/06/2011 09:41 AM  Top
lmoore
 
Posts: 6
New Member

Honestly, after perusing the discussion boards, I feel less alone. And soooo much better mentally. Laughing

09/06/2011 12:41 PM  Top
WildFlowerWv
 
Posts: 62
Member

Hello Imoore,

Welcome to our haven! I know its mine anyway. I like you have been sick for many years and was just diagnosed last month with Crohns. I swear your words above could have been written by me. Some days are a struggle, but others are ok. Everyday, before I open my eyes, I wish that its a good day. But, when its not I fight through it. When I am having a moment, I log on here. Sometimes I dont post anything, just read what others have written. This last month would have been so much harder without this place. Welcome and look forward to knowing you.


09/06/2011 01:01 PM  Top
lmoore
 
Posts: 6
New Member

I think maybe I should stop with the research. I just learned that what originally sent me to a doctor (calcific tendonitis, tendon insertion pain, wrist, elbow, shoulder pain) are yet one more indicator of Crohn's. I need to get past the misdiagnosis anger. I know it's not healthy or helpful. Maybe it's a time thing?

09/06/2011 01:04 PM  Top
lmoore
 
Posts: 6
New Member

On a positive note, I've found this community. I so appreciate the words of welcome and the upbeat postings.

09/06/2011 02:57 PM  Top
zaftig
zaftig
 
Posts: 516
Member

Welcome to the club, Crohnie! The misdiagnosis roller coaster is going to inspire all kinds of emotions, and there is absolutely nothing wrong with putting your positive attitude on the shelf for a little while to process the anger of suffering needlessly for years.
Just another patient trying to chase down some good health.
Reply

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