Where do I begin?

[Amanda-Amanda]

I am new here and as of now undiagnosed. It all began last year around thanksgiving. I had a couple experiences where I almost didn't make it to the restroom on time. I never really thought too much of it. I just had my 4th child a couple months prior, this was my 4th c-section delivery. During which my bladder was taken out and had to be re-routed. The symptoms began getting more severe and more frequent over time. I would experience explosive diarrhea atleast once a week accompanied with severe abdominal pain, gas, bloating, and fatigue. As the months went on I've experienced one 2 week break from these symptoms. My symptoms are more severe now and I experience no relieve through the use of immodium. My most recent symptoms include joint pain, severe headaches daily, and severe fatigue. My lymph nodes are almost always swollen as well. Just 2 weeks ago my mother was diagnosed with liver cancer and crohns disease. This I what prompted me to look into this further. I honestly have accepted my symptoms a normal and have sadly altered my life to avoid the embrassment. I have an appointment tomorrow with a leading gi doctor in Dallas. I am hoping to figure out what is wrong with my although I already have a good idea what it is. I can no longer live like this. This has put a huge strain on my life, as time goes on it's only getting worse.

 

[David]

Hi Amanda and welcome! I'm so sorry to hear of your trouble and about your mom's diagnosis as well

That you have the symptoms you do AND your mom has Crohn's Disease will no doubt make the GI suspect it as well. So I'm sure you're going to get the necessary tests to see what's going on. Let's hope it turns out to be nothing but we're here for you no matter what.

We have an undiagnosed club full of amazing people going through what you are. You may want to check it out.

Please let us know what the GI says and if there's anything we can do for you.

Good luck!

 

[Angrybird]

Hello Amanda and welcome to the forum. I too am sorry to hear you have not been doing well and about your mum's recent diagnosis, my thoughts are with you both and your family :hug:

Please do check out the above mentioned forum and keep us updated on how you are getting on.

AB
xx

 

[Astra]

Hiya Amanda
and welcome

So sorry to hear about your Mum. Hope you find comfort here with us. Lots of friends for you over in the undiagnosed club.
Lotsa luv
Joan xxx

 

[Amanda-Amanda]

Well, my appointment yesterday got me no where fast. Why do doctors automatically assume they know more about your body then you do? He basically said sounds like you have IBS, sorry but sadly IBS was not what I wanted to hear. That does not help me, nor help me explain my other symptoms. Felt my stomach and did blood work. Wants to do a colonoscopy but I cannot afford it because my insurance bills it differently due to my age 28. I am so fed up. Fed up of not having anyone listen to me and fed up of all the pain. To top it off he yawned the entire time and when I complained of my frequent headaches he blantely told me that he wasnt a headache doctor

 

[David]

:facepalm:

I'm so sorry Amanda

Did you tell him that your mother was diagnosed with Crohn's Disease? If so, with everything else you said including the "I'm not a headache doctor" then I have to call his "leading GI" status into question although at least he was willing to do a colonoscopy rather than diagnose IBS and send you on your way.

Are you able to appeal your insurance company not covering your colonoscopy? That doesn't make sense to me. Or is it a deductible thing? Maybe see if there's any GIs out there who can do a payment plan?

What blood work did he do?

 

[Amanda-Amanda]

Yes, he knew that my mother was recently diagnosed. That really didn't seem to matter. If i have a colonoscopy done with my primary care doctor then the hospital will pay my deductible and i will make monthly payments. The doctor in Dallas does not offer this option so I would have to pay in full. I should have got a copy of the bloodwork order but I didn't, I do remember a CBC, a metabolic panel, and something to do with a protein. I dont remember the rest at the moment.

 

[David]

I was thinking about your case a bit. Since the doctor thinks IBS and you think IBD, you may want to look into a fecal calprotectin or fecal lactoferrin test. It would not be elevated in IBS but usually is in IBD. It might help you decide what to do next.