How long did it take to get a diagnosis?

[mommyoftwo]

I am so unbelievably frustrated and am just wondering how long it took you all to get diagnosed with Crohn's? I am not diagnosed but it is something that my new GI doc is thinking of. I have lost about 40-45 pounds in less than a year, can hardly eat due to pain and nausea, have severe diarrhea (3-7 times per day min and it is pure water). This has all been going on over a year and it is getting worse and worse. I am just so frustrated. I had a barium enema today to check for a fistula and based on what the person doing the test said, I assume everything is fine there. I just don't know what else to do and was wondering how long the process can take. It has been going on over a year but getting significantly worse within the past 2 months or so.

 

[2thFairy]

It took me 18 years. Lots of folks have had to wait several years to get a diagnosis, while others got it on their first scope.

Do you feel confident in your GI?

Hang in there! We are here for you.

 

[chrisnsteph1022]

I got mine very quickly-during my first scope, 6 weeks after symptoms started.

 

[Catherine]

Sarah gi believes she had crohn for up to 3 years, symptoms were severe in 2 months prior in dx.

 

[tots]

I have had symptoms since I was five. I had problems all along but, didnt have a "major" flare until I was 28. I did experience diarrhea and weight loss prior to my DX. It took my Dr about 6 months to figure out what was wrong with me. And I worked for him at the time. I
will never understand why it is so hard to get a Dr to commit to a Crohns Dx.

I hope you get relief soon.

Lauren

 

[mommyoftwo]

Ugh...that is scary that it can take so long. My symptoms were too bad up until the past 2 months or so and now they are getting pretty bad so hoping the new doc will be able find something even if it isn't Crohn's. I just need some relief!

Thanks.

 

[abbyleigh]

I got diagnosed about 5 months after I first started seeing a GI doctor but my symptoms had been going on much longer than that. Just hang in there, I know it can seem futile but getting a diagnosis was so validating and then you can focus on getting into remission!

 

[Sailorluna]

It took 16 years (and a series of wrong diagnoses) before they diagnosed me with crohns on the operating table.

 

[mommyoftwo]

Can I ask what other diagnosises you were given prior to Crohn's? I assume IBS was thrown out there but anything else?

 

[2thFairy]

I was told IBS and major depression, sent to a psychiatrist and put on pain meds.

 

[Sailorluna]

dairy allergy, gallbladder problems, gastritis, ibs

 

[tlc-x]

Never give up! I'm undiganosed and been poorly for around four years now, whereas my cousin woke up one day, found she felt rather poorly, thought it was a tummy bug so just chilled at home as best she could, lost a load of weight but because it was just a bug, she didn't worry too much. Then a few weeks later she found blood in her stools so went and saw a doctor, they got her a colonoscopy in the next few weeks, they diagnosed her with colitis and then she got put on something.. not sure what it was and after a year she went in to remission and she's been fine ever since and this was about.. 5, 6 years ago.

Everyone else in the family spent years getting diagnosed, even longer finding the correct medication. Some people are luckier than others. Just never give up, stay strong and you will get there eventually.

 

[DanHerefordshire]

Four years for me...i could of been diagnosed straight away had they tested correctley... and the longer undiagnoses goes the more severe and dangerous the condition gets

 

[HorseLover!!]

I was diagnosed within a year and that was when I was 3 years old and I am still not in remission even now .

 

[marjory2020]

It took 16 years (and a series of wrong diagnoses) before they diagnosed me with crohns on the operating table.

Sailorluna that is absolutely unreal! It took me 5 years to get an official and I thought that was a long time!

 

[mommyoftwo]

It seems like longer is definitely more common than shorter. I really have no idea if that is what I have or not but it is very discouraging to know that I could have years to go before being diagnosed.
How did you all control the weight loss? I started off slightly overweight but now am on the thin side and if they don't figure out what is wrong with me soon I am going to be too thin with all of the weight loss.

 

[HorseLover!!]

It does take quite a while to be diagnosed but for some people not long at all. Hopefully it won't be to long before you get diagnosed I say to myself think positve and keep smiling even if you are having a bad day . Not really sure how I managed to control my weight, but then again thinking about I haven't really been able to I have either dropped a little or dropped alot and maybe put a little bit back on again but that was only with the help of the doctors at the hospital as when I was first diagnosed I wasn't able to put on any weight at all to start of with but as they started to put me on better meds it started to come back but I do still loose it.

 

[iamahilton]

I am so unbelievably frustrated and am just wondering how long it took you all

 

[iamahilton]

I was finally diagnosed in 2000 while having a small bowel follow through for a different problem. If you haven't had that done, talk to your dr. There are lots of medications to try and last spring I took Lialda and it seemed to have an effect. It's very expensive, but Shire is one of the drug companies that offers patient assistance for people who can't afford it.
Good luck

 

[Tommy21bn]

It took me 17 years to get a diagnosis

 

[Cathwilms]

All of the answers to this question is scary! At 64, I may not live long enough for a diagnosis!

 

[December's flower]

It took me 6 years they found out during an emergency abdominal surgery due to a Crohn's related abscess ...-
Should have just had a colonoscopy since I was suffering from regular diarrhoea but I wanted to believe it was just ibs

 

[Anna's Bandit]

I was finally diagnosed in 2000 while having a small bowel follow through for a different problem. If you haven't had that done, talk to your dr. There are lots of medications to try and last spring I took Lialda and it seemed to have an effect. It's very expensive, but Shire is one of the drug companies that offers patient assistance for people who can't afford it.
Good luck

I was on Lialda for my UC for a few years. I had good health insurance at the time. But in 2012 I had no health insurance and applied at Shire Cares for assistance. Got my Lialda for free for a year. I had no job and no money at the time, so that was a life saver.

 

[Anna's Bandit]

Was told I had IBS in 1998.
Lost 60 pounds in 2006.
Was severely depressed and thought the weight loss was due to my depression.
2006 diagnosed with UC.
2018 diagnosed with Crohn's.
It's the gift that keeps on giving, that's for sure.