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Gastroenterologist Referral Time is Different for Everyone

When it comes to diagnosing Crohn’s disease and colitis, there is no normal. These diseases can take anywhere from a week to decades for doctors to write a referral and for a specialist to make the diagnosis.

It is our hope for the community that the more word spreads about these diseases, that the referral and diagnosis times decrease significantly.

To learn more about what the process has been like for members in our community, we reached out and asked on the CrohnsDisease and UlcertativeColitis Facebook pages: “How long did it take for a referral from a primary care doctor to a gastroenterologist before diagnosis?”

Here’s what you had to say about the length of your journey.

Years until a Crohn’s or UC diagnosis

“Took 2 years.”

Unfortunately, many of you in the community shared that years passed before a doctor could tell you with certainty what your diagnosis is. That journey included trial-and-error and suffering with symptoms for far too long. It is our hope that by publishing articles like this one that awareness for these diseases increases and those others don’t need to wait years before learning of their diagnosis.

“Back in 1972, it took 4 years—and a cardiologist diagnosed me.”

“Took 2 years of dealing with local gastros to get a referral to Mayo.”

“I was diagnosed with just about everything, just not with what I had, and mostly because my PCP wouldn’t give a referral.”

Grateful for a quicker diagnosis

“I feel I was very lucky…it was 7 months.”

Several of you who received a diagnosis in less than a year mentioned feeling grateful. The field of medicine can be a sad place indeed when suffering occurs for more than half a year and the sufferer feels grateful that it wasn’t longer! Those who were lucky to get a diagnosis quickly often had a friend or family member who was an advocate pushing for tests, such as colonoscopy.

“I feel I was very lucky. My stepdad has Crohn’s, so when he heard what was going on, it was 7 months from the onset of symptoms to having a colonoscopy with a diagnosis. Will be forever grateful for his insistence to go and ask to be seen by a specialist!”

Diagnosed after only a few months

“About 2-3 months.”

A few of you shared that your journey from the first symptoms to the first answers was only a few months. We are happy that you found a diagnosis so quickly. The only downside is that even just a few months of suffering from Crohn’s or colitis with no help can lead to major problems, including drastic and unhealthy weight loss.

“About 2 to 3 months from first visit to colonoscopy and doctor.”

“Had symptoms for several months and lost 20 lbs.”

“I was diagnosed a few weeks later.”

Diagnosed with Crohn’s or UC after an emergency

We are glad that there are those in the community who received a diagnosis so swiftly! Sadly, this does not seem to be the norm. And, many of you who did get a diagnosis quickly mentioned that the ER played a part in your story. If only there were an easier way to get a diagnosis so fast without having a medical emergency!

“My GI doc thought it was just lactose intolerance at first. My wife, a nurse practitioner who used to work with him, was firm in requesting a lower endoscopy (I was hoping to not have one). Sure enough, lower endoscopy and tests showed UC and IBS. I have been journaling and found my trigger foods, too. So relieved after diagnosis and good journaling.”

“It took 2 weeks to get the first appointment with my primary physician. Then another week after that appointment to schedule and have a colonoscopy.”

“I was admitted from the ER. GI doc on call decided I needed esophagogastroduodenoscopy and colonoscopy, and scheduled both for the next day and I was diagnosed a few weeks later.”

“I was referred to a specialist during an ER visit. I had to wait a month before seeing the specialist.”

No referral required

“Thankfully, I didn’t have to wait at all.”

Several of you in the community shared that you have excellent health coverage and did not have to wait at all to get a referral. We are happy that the journey has been so smooth for you! We wish more insurance companies would follow suit.

“My primary doctor’s office didn’t think anything was wrong, but I knew there was. Luckily, my insurance did not require a referral to see a gastroenterologist.”

“Thankfully, I didn’t have to wait at all. The insurance we had at the time didn’t require a referral.”

“Still in the process!”

In the process of getting a dignosis

Some of you are still in the middle of the process. We wish you success sooner than later.

“Still in the process! So far, 3 months.”

We want to say thank you to everyone in the Crohn’s and ulcerative colitis communities who opened up about their stories. We value your honesty.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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