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Not sure if I was misdiagnosed - anyone else had the same experience as me?

Ok so here is my story - I was 16 when I was diagnosed and am now 30. In that whole time the only indication I have crohn's were the symptoms that prompted me to seek help when I was 16 - strong cramps after eating. That was it. I had these symptoms for 3 months, went to the doctor's, got diagnosed with Crohn's, took medication, it cleared up and I haven't taken anything or had any symptoms since.

I got diagnosed via a barium x-ray; I never had a colonoscopy or any other invasive procedure. Additionally, the symptoms came on during an extremely stressful period in my life when I had very recently lost a close relative.

Do you think it's possible I was misdiagnosed?

Thanks!
 
Hi there,

Have you had a follow up/ check ups? In the UK its guideline that a check up should be done annually to check how things are going. Are you under the care of a GI?

Unfortunately I can't comment regarding mis-diagnosis, it is possible but did they explain what prompted the diagnosis from the barium and swallow? What medication did they treat you with? Sorry so many questions come to mind
 

valleysangel92

Moderator
Staff member
Hello there

A mis diagnosis is possible, but it is also possible that the barium test was simply enough to give the doctors what they needed. Colonoscopies are invasive procedures and they do carry risks so if a doctor is able to avoid using them then they will do so.

Crohns can be triggered by stress, many people will find that symptoms are worse during times of emotional upheaval or when they are under intense pressure.

There are cases of crohns where a person will only have one flare up and then not have any for a very long period of time or maybe even never again.

I think you should seek a follow up though, crohns is a sneaky condition and can flare up out of the blue. It is possible that it is causing damage without your knowledge.
 
Wow! I would get a second opinion! If it IS Crohn's, I'm very jealous of you! You are very lucky! I wish you the best!!

Katie
Diagnosed 9-2001
Crohn's Disease
Too many meds and procedures to mention....
 
Thanks for all your replies. Was just curious as my friend who is training to be a doctor said that they only way they could have diagnosed it for sure is via colonoscopy. But perhaps she is wrong.

I have not had a single check up since I was first diagnosed and was never informed I needed to go for any. Since then I have simply not bothered as I had no symptoms and felt fine.

I actually cannot even remember the medication I was put on it was that long ago...

From memory the barium x ray showed inflammation.

I know that crohns can be symptomless for years after one flare up, but I have never heard of anyone going this long without symptoms before. Longest I've heard of is 10 years. Just wondered if anyone has had a similar experience.
 

valleysangel92

Moderator
Staff member
Usually a colonoscopy is used to confirm but there are a number of possible reasons for not using one, it may of been that the inflammation was severe and had caused your intestine to narrow to the point where they didn't think a scope would be viable. It might of been the doctor simply didn't feel that a scope was necessary, knowledge has developed a lot in the past few years and it may of been that when you were diagnosed it was accepted to diagnose on imaging. It could also be that the inflammation you had wasn't in your colon since crohns can affect any part of the digestive tract it is possible for the inflammation to be in the small intestine which is out of the reach of a colonoscopy.

No symptoms doesn't always mean no inflammation, at the very least you should be having bloods every so often to make sure there's nothing getting missed.

Although personally I have not experienced this I do know of people who have. Jennifer, our administrator is currently on year 15 of remission. Someone I know from work experience has a father with crohns who hasn't had a flare up since diagnosis around 20 years ago.

While what you are describing isn't that common it is certainly possible, but I would urge you to take care.
 
Thank you everyone. You have freaked me out a bit though as I am now worried I am doing myself all sorts of internal damage without realising it!
 

valleysangel92

Moderator
Staff member
I don't think you need to worry to much, it wasn't my intention to scare you. Just make sure you're vigilant and maybe think about organising to have some bloods or a stool test now and then so if it does creep back in then you'll know about it before it gets too far.

Let us know if you have any questions
 
I was diagnosed via biopsies taken from a Colonoscopy. I really don't think it sounds like you have Crohn's, but that's my un educated opinion!

Hugs to you!
 

my little penguin

Moderator
Staff member
Don't get too worried
Just get a follow up with a Gi and they will probably take it from there with scopes and bloodwork .
Better to know than not know either way
 
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