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misdiagnosis

Hi i have been dealing with lower right abdomen stomach pain for close to 3 years.....had spigellian hernia surgery and appendix removed.....many special tests and scans and always listed as "questioning crohns" symptoms first 2 years massive lower right pain every couple of months including visits to er. finally got to gastro specialist in January...still no diagnosis...camera pill showed stricture and possible chrons 3 weeks ago......going to send me to Cleveland for possible exploratory surgery...massive flare up saturday am...er doc says ct scan shows massive flare up and stricture with large thickening of small bowel...issues pain killers and steroids and basically says doctor is an idiot and sends me for 2nd opinion.....cant get opinion till august...call gastro dr and tell him of er visit and proof of chrohns...havent heard from him since.. so i have a stricture with heavy thickening of wall...chrohns that not only showed up on this ct scan but last 4 over year and a half but was "missed" but pain is all the time..severe every 4 or 5 days and i am losing weight and not functioning..... i dont know what to do next....im in pain always..cant seem to get a response from current doctor...cant get in to second opinion doctor and no idea when i can get to special clinic in cleveleand.....do i just wait a few days for flare up and hope its bad enough to hospitalize me then maybe something will be done...any help or advice would be appreciated...im at wits end..sorry for typos but im just lost as to what to do...er doctor says its obvious chrohns for last 2 years why cant anyone see it and deal with it?
 

David

Co-Founder
Staff member
Hi Andrew,

Welcome to the community though I wish it was on better terms. I'm so sorry to hear what a rough time you're having and my heart goes out to you.

Unfortunately, we do see stories like yours on occasion.

One idea you may want to consider as you try to get seen by your doctors is to go on a liquid diet of enteral nutrition. It alone has put some people in remission while helping ensure sufficient nutrient intake and staving off that weight loss.

Others will hopefully have other ideas for you.
 
Hey Andrew,

I dealt with being misdiagnosed for almost a decade my original Doctor diagnosed me as having a mild form of ulcerative colitis and all my future doctors went with that blindly even when my symptoms were ridiculously severe and it wasn’t until I had emergency surgery to have my colon removed due to toxic megacolon and they took biopsies they realized I have a very severe form of crohn’s.Going through that period made me feel like I was going crazy when everyone is telling me that I’m fine when I clearly wasn’t.
 
Hi Andrew
Welcome to the forum sorry to hear your bad time it is one of those diseases that have no easy answers unfortunately hope you manage to sort it out
Hugs sent your way
 

my little penguin

Moderator
Staff member
I know for kids ...
Some parents go the hospital Er where the Gi they want their kiddo seen at - whenever the kiddo is bad
Sometimes it gets a referral in faster

Can your pcp call Cleveland for a faster appt?
Doc to doc referrals also move faster.
 

Honey

Moderator
Staff member
Hi Andrew, and welcome. So sorry you are feeling rough just now. There are no set symptoms for everyone with Crohn's , so it takes time to diagnose, often when symptoms become severe as yours has. I understand how hard it will be for you as I was misdiagnosed too. Keep seeing your Doctor, especially if you are getting sicker. Look forward though to better days. I too was on Steroids as they help to reduce the inflammation, which causes that pain you experience. It is where they start treatment. I hope you feel better soon. Best wishes.
 
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