Exhausted and still no answers

[hercules25]

I am on my 14th year of abdominal pains, on and off diarrhea, extreme fatigue, vision problems, nausea, increased heart rate, and so on.
I have had 2 pill cams (normal) 3 Colonoscopies (1st one showed inflammation where small and large intestines meet up), 2 after that showed clear, 3 endos (All clear), Cat scans all clear, Barium test all good.
I am positive for both Anti-Saccharomyces cerevisiae antibodies (ASCA) test but DR said that he cant diagnose me with Chrons due to that cause all my other blood work is fine. He said most people with Chrons show levels of CPR or white blood increases.
The only positive blood work is my HLA-DQ2 gene, Low protein levels (sometimes), positive ANA SCR (SSA AB), High Vitamin B6, contracted Camplabacter jejuni a couple years ago.
I have been tested by every Dr out there for every disease and nothing. I have been to Gastros in FL, GA, and Texas. One gastro said he thought maybe Chrons and placed me on meds, I have been on Asacol, Entrocort, and now Pentasa. I am still sick. I never throw up and I never see blood in my stool and I never lose weight without trying. The highest fever I ever ran was 99.4. I have been tested for Celiac and antibodies are neg but that was after i was gluten free. Even after all this the pain is getting worse and worse but there is no one to go to anymore and all test have been done. I have no idea what to do anymore. I am 36, and mentally and physically exhausted.
Any advice or thoughts would be great.

 

[Spooky1]

hi hercules,

I have had crohns for donkey's years, your symptoms of extreme fatigue, nausea, abdo pains etc i can identify with, mine is crohns and i've had my surgeries. i don't really know what to advise you really, cos i feel exactly the same way, and frankly, if there were meds out there to help, well, i've tried them all. i have a liquid feed through my gastrostomy, sip feeds and little nibbles occasionally.

but i understand you. its so hard for you, and people like me to live any kind of lifestyle. my life consists of me and four cats and rarely get out, due to bones, crohns, and that bloody awful fatigue and nausea.

we are an understanding bunch of humans and i do wish you luck. i cried a lot yesterday cos i am so poorly at the moment. admittedly i do feel better for it but sometimes some of us find it hard to get through our lives. it is mentally and physically exhausting.

Best Wishes

Diane

 

[mikeyarmo]

Welcome to the forum hercules25.

I am sorry to read about the health problems you have had to deal with for the past 14 years. I do not have any specific advice but I hope you will find benefit in the forum. Please consider using the forum's search function to find posts on topics that will be helpful for you.

 

[afman]

sound like my case. doctors keep calling in ibs since all test come back fine except my blood work shows the raised crp and something else associated with crohns. i have daily abd pain nausea joint pain. my gi np has given up and referred me to the actually doctor to see if she has anything else that can help me.

 

[xJillx]

Hi and welcome! I am so sorry you haven't gotten any answers after so many years. This disease can be so difficult to diagnose, but I'd say your case is a bit longer than most.

Have doctors suggested any other cause for your symptoms? Have they retested your for Celiac? If you were gluten free with the first test, that would alter the results. Granted, I would imagine the endoscopy and biopsies would have showed evidence of Celiac. But I would test again; it's better safe than sorry.

I sure hope you get answers soon!

 

[hercules25]

I started eating gluten again today so I can retake the Celiac antibody test. I am positive for the prominent gene for Celiac (but that does not mean I have it). Yeah they have suggest other things but they are all negative too. AAHH

 

[Trysha]

Hi Herc,
Sorry you are having so much pain and I share your concerns.
You reported that your ANA is positive ---have you been checked over by a rheumatologist, and also have you been checked for thyroid levels?
ANA can be indicative of an inflammatory disorder., among other things.
You also report a finding of inflammation at the junction of small and large intestine, this could suggest Crohn's., which never goes away on its own.
Is it possible for you to be seen at one of the Mayo clinics?
Wishing for you to feel better.
Lots of hugs
Trysha

 

[hercules25]

Hey Trysha
Yeah I saw Rheum but I am seeing another one next month. Yes my thyroids have been checked and nothing and I have been cleared of Lupus and Sjorden Syndrome. The inflammation they found was one my first scope but the 2 after that showed clean but the systems are still the same. My insurance will only pay 50% for Mayo Clinic. I have active duty military insurance that covers everything else but only 50% for Mayo Clinic, Go Figure. Thanks for thinking of me. I look for all angles possible.

 

[Trysha]

Hi Herc,
There are other good places like Johns Hopkins would the insurance be good there?
It would mean a journey from your area though.
Trysha