Getting listened to by doctors and a diagnosis

[Swardy]

I will keep this short otherwise would be here for a long time!
My partner has had many symptoms going on for many months and after being passed from department to department, ignored, told to go home and various other outcomes he has come to a dead end.
The gp believes there is crohns going on hence the referrals but after horrid treatment and incomplete scans there has been nothing abnormal sp far to see despite some worrying symptoms.
We believe that the only option left is a pill cam as contrast cts etc cannot be completed due to severe pain.
I'm wondering how you go about getting a pill cam though? Currently the gastro has supposed to have referred to an ibs specialist when we all know full well it isn't ibs due to certain symptoms. Can we be referred back to the gastro by the gp with a recommendation for a pill cam?
Simply cannot go on any longer with pain and no life along with all the other associated problems

 

[Anna's Bandit]

Swardy. Welcome !

Sorry to hear that you are having to go through all those tests and doctor problems. I guarantee that everyone here has been through most of the same things you have.
I dont have the answer to your question though. I was just diagnosed with Crohn's this year. Yeah, they told me IBS 20 years ago. UC 12 years ago. Now Crohn's.
You don't say where you live ? Folks here are from all over the world, but the main countries I have seen is USA, UK, Canada and Australia. Health care is different in all countries. I live in the USA and my PCP does all my referrals, but everything really depends on your health insurance and how it works ?
Here are the tests I had before my diagnosis. Blood tests, stool tests, CT scan and colonoscopy/ endoscopy. Then I got a diagnosis of Crohn's. Inflammation and stricture in my terminal ileum. My treatment is Humira and 6mp pill. I would think your doctors would give you a full range of tests before getting to the point of having a pill cam ? Someone should come around shortly who has had experience with the pill cam.

Lynda

 

[Lady Organic]

Hi and welcome.
what are the symptoms your partner experience that make you think its crohn's and not IBS?

Cam pill exams are done under the supervision of a GI. If the current GI doesnt want to do it, Im affraid you would have to go to another GI.

What about a colonoscopy? A colonoscopy with biopsies is the gold standard test to diagnose most cases of IBD. This is the test to go for.

 

[NuttyGuts]

Hi Swardy,
Sorry to hear your partner is enduring such pain. If a stricture is what is causing pain, a pill cam may not be the right test if it can't make it through. I was diagnosed with Crohn's in 2014, and have had a colonoscopy, a blood test, a CT scan and an MRI. I had asked my GI about the pill cam, and he said it would never have made it through the strictures I have in my small intestine. You may want to try to get a CT scan and/or MRI. If the pain is too great, maybe a temporary course of prednisone will get your partner through the tests til a true diagnosis can be had.
I am relatively new to the forum, but there's lots of good info here, and some wonderful supportive folks as well- welcome!

 

[steve5424]

Sorry to hijack, I am in the same situation.

Been suffering symptoms for years to varying degrees and now going to my GP he is sure its IBD, specifically Crohn's. However the Gastroenterology specialist, has seen me once and done a stool test and is not taking it any further.

My inflammation in the sample was 103 which he said was higher than normal but nothing to worry about and I just probably have IBS.

I have sever stomach pains, constant upset stomachs, anemic, Vitamin D deficiency. Night sweat, clammy or sweaty at any time of the day. Shivering at the slightest cool temp. Lower back ache when I have a flare up. Constantly tired and muscle fatigue That's just some of them.

Specialist hasn't even done a colonoscopy either, however my GP is pushing to try and get them to do one. I am fed up and just want a proper diagnosis.

 

[Anna's Bandit]

Steve, a scope sounds like it is absolutely neccessary for you at this time. Maybe a CT scan or an MRI too. How can they diagnosis you based on just a stool test ! Without a proper diagnosis you cannot get the right treatment.
I guarantee that all of us here on the forum understand your frustration.
There is a thread here too for the undiagnosed.
Take Care.