My first post! I'm not diagnosed yet, having trouble talking to my doctor about severity of symptoms

[marinara]

Good to be here! I haven't actually been diagnosed with Crohn's, but I am hoping that you will read my little story.

For a decade I've been having problems digesting food. After eating I would feel fatigue, brain fog, mood swings. But for the last three years, I've lost control of my body. If I ate for instance, a Kentucky fried chicken meal, I would not only have intense brain fog and fatigue, but my heart might "beat out of my chest." I used to have chronic diarrhea but by keeping notes of problem foods I no longer have this problem. I also have extreme thirst and sometimes it feels like my gums or tongue is swelling. I sometimes have abdominal pain after eating hot or salty food.

I'm also quite anxious. And I think doctors are making me anxious! Even though I clearly explained to the doctor the depth of my misery, the first and only diagnosis I've gotten was: "panic attacks." Since then I've seen two other doctors who have repeated that diagnosis, and had assorted blood and urine tests. Notably, I've had increased eosinophils and a positive urine test for bacterial overgrowth. But my current doctor insists that i'm working myself up about nothing, and I'm suffering from an anxiety disorder.

It's important. I feel like I can't get a diagnosis. I'm afraid that even though "getting sick" literally happens 10 min after a meal, I might never get treatment. I also loathe the idea of a mental illness diagnosis.

I'm really bad at talking to doctors. I probably come across as opinionated or negative. I believe i'm in the right place to ask for help from Crohn's disease survivors on how to get past what seems like a glass ceiling.

Thanks,
marinara

 

[Ronald]

REALLY angers me when doctors say people are worrying about nothing or that it's anxiety. You can't fake the symptoms we have. What do we have to do? Film ourselves crapping every 5 minutes and rolling around in pain?

My doctor was wonderful and he said and I quote 'I am very glad you came in today, these symptoms cannot be ignored. It could be something very serious.' and that should be the response of all doctors. He then went on to carry out every test possible. No wonder people have anxiety about visiting the doctor, because too often they get dismissed!

Rant over. I do hope you get a diagnosis and find a doctor that will listen to you! It's true, it does seem impossible, but you have to persist.

Lewis

 

[marinara]

Cheers!

 

[deb123]

Hi Marinara,

So sorry to read about your experiences with Doctors. I think we all to some extent feel uncomfortable telling people about how this disease can really affect us, warts and all!!
I got around this by penning an open letter all about my disease, it really helped and every Doctor who read it were so understanding, one in particular was apologetic.
I also found it therapeutic to get it all out there, and it felt like a weight was lifted from my shoulders that I didn't have to explain to all and sundry!

I hope my suggestion helps, and best wishes to you x

 

[wild_one353]

the inflammatory response can make symptoms of anxiety much worse and be the sole cause of them as well.

the dry mouth could be a symptom of inflammation. some times Irritable bowel syndrome has some inflammation present but not as much as Inflammatory bowel disease(IBD). Hard say with certainty but its possible you coudl have crohn's you should tell them about your history with diarhea and how you eliminated problem foods to control it, otherwise telling them you have diarhea as a symptom is likely what would signal them to perform a colonoscopy to check for crohn's, in addition to blood tests to check for inflammation signs.

If you dont tell them the right things they may not feel there is any reason to do a colonoscopy or blood test, and you may not be properly diagnosed. They may not connect these symptoms(anxiety, dry mouth, no diarhea??) directly to crohn's and push you in other directions. You are going to want to get a colonoscopy.

Mainly they are looking for you to say you have diarhea and maldigestion and mucus and perhaps blood, then they can do a colonoscopy and not look like they are performoing unneeded tests on you. They need these signs to have good reasons to do tests otherwise they could face lawsuits for malpractice of they have no evidence based basis for their decisions. they simply cant give any old joe who comes into their office a colonoscopy just because the patient think's they have crohn's colitis or ulcerative colitis.

tell them everything you can so drugs are an option for you.