I Need your help...how were you diagnosed

Hi my name is Katie I am now 28 I was diagnosed with Crohns In 2006 when I was 22 I already have hypertrophicardiomyopathy and have an AICD and had open heart/ cardiomyectomy in 2009.
In 2006 I had just spent 2 yrs helping with my father who had coloncancer I was home from his funeral for all of 1 month and my husbands little sister at age 20 was very unexpectantly diagnosed with lymphoma and died with in 2 weeks. I started having extremely bad constipation and horrible pain in my bowels and ulcers in my mouth and throat( which I have gotten since I was a child)nausea, gloating and of course my bowels inflamed to the point where when I have a flare up I can feel it in my back with my fingers it's that swollen and it is excuriating. After 2 clean colonoscopied and a battery of barium exams and gluten, dairy allergy blood tests...my doc came in the room and was like well you with your symptoms and the fact that we found grandulomas in your spleen it means 1 of 3 things....tuberculosis, cancer pr crohns...
I was so emotionally overwhelmed I tuned out. I know she wrote me a prescription but I left. A few days later I asked my primary doc to schd a standard food allergy test and found out I was allergic to 13 different foods 2 of which I ate at just about every meal onions and white rice. I cleaned up my diet and did research and for a time convinced myself that I didnt have crohns especially cause I was about 180lbs and very rarely had diarrhea.

Things were good for a while until 3 months ago when another flare up started and I didn't have medical insurance. 2 weeks ago I started having pain in my right leg it started while I was sleeping and lasted for about 10 days I did research about Uric acid and crohns...
I started taking probiotics, fish oil and a vitamin and that helped me drastically with my constipation, I started this 2 weeks ago. Still in alot of pain and feeling drained.

I have an incredibly high tolerance for pain so I know this really bad because it make me freeze in place and sweat and hard to breath sometimes.

I will have medical insurance again as of 01/01/2013 and will be seeking out a new doctor mainly do to bedside manners. I live in Hawaii so my options are limited.

Please tell me what I should ask and how you where diagnosed. I know when I was 17/18 years old there were tests and the docs thought lupus at that time. I just want to be diagnosed correctly! Thank you all for your help!

Hello an welcome to the forum.

Just to confirm are you doubting the initial crohn's diagnosis and think Lupus is more likely? Have you ever been on any meds for crohn's and if so can you recall what you were given? One thing I would ask the doc is to have a new round of tests arranged so an up to date look of things can be done, also to have your vitamin levels checked. I take it currently that you are still following a diet based on the foods you are allergic to?

For me once my GP was assured I didn't have an eating disorder (blood tests gave an inflammation marker of over 180) diagnosis came fairly quickly and easily, I was referred to a gastro doc and based on my appearence and symptoms alone I was started on steroids as he was sure I had crohn's - I had severe stomach pain, diarrhoea, mouth ulcers, round purple blotches all over my legs and had lost a lot of weight and looked awful. The tests that confirmed the diagnosis was a colonscopy,a barium scan and another scan where they took a load of blood and seperated the white cells and then re- injected them with a substance attached which then showed on the scan so the doc could see where they then went to in my body - a spot over to the right side of my abdomen which I now know is where my small bowel met the large.

I hope this helps and please keep us updated on how you get on.

AB
xx

Hi KTGirl wow you have had it rough lately. I would first like to send my condolences at the loss of your family members and secondly give you hug for all the things you are dealing with health wise.

I know that CD can cause mouth ulcer but the fact that you have had them since birth peaked my interest. I have a autoimmune disease that causes inflammation of the blood vessels anywhere in your body and can look exactly like CD, it is called Behcet's Disease or Syndrome. Its hallmark sign is that you have recurrent mouth ulcers at least 3 times a year, it can also cause heart problems as well. Here is a link to it if you would like to read more about it. http://www.crohnsforum.com/wiki/Behcets-Disease

I was diagnosised with CD by the Prometheus test, the inflammation that they saw on my colon and upper scopes was non-specific. My GI is not sure of my diagnosis right now because of the scope results. My rheumatologist said it could just be that my BD is just really attacking my intestine right now. Either way it goes the treatment is the same. I take Remicade infusions for both of them.

Hope you get some answers and relief soon.

Just an update

Yeah I have medical insurance again!

Well I have been to a doctor diagnosed me with a sinus infection and a UTI that I can feel in my kidneys.
So are UTIs common with Crohns? Or is diabetes common with Crohns?
Also the doc ran a ton of blood work the things that came back out of the normal range were
HDL of 33 norm is >34
CHOL/HDL is 5.3 apparently 4.4 is norm
HGB A1C %, HPLC was 4.8 Norm is <5.7
HBA1C 6.5% norm is <5.7%
And the doc refereed me out to a cardiologist for pacemaker and a Gastroenterologist, can wait to go for those tests (note sarcasm)

Hoping the doc calls me back into go over tests, I read it as diabetes which scares me. Maybe the UTI gives a false positive? IDK
Any advise or thoughts would be appreciated, I am a bit terrified at the moment.

I am glad you have insurance again so that you can get you health under better control. Why do they think you need a pacemaker? U have diabetes and a heart disorder that causes my heart rate to run high all the time.

I hope that you get some answers soon and the meds to send you into remission.

@ Earnellzwifey
Hey there I actually have a pacemaker and defribulator due to genetic disease my bp is really good 110/70. I haven't been told I have diabetes but I think the results indicate that I do.
Can wait to have some answers

I have heard of UTI's with crohn's so this could be what you have, definetly chase the doc if you don't hear from them today.

i really hope you stopped eating white rice, it contains little to no vitamins, and no anitoxidants, its about as nutritious as cardboard.

they will need to perform a colonoscopy to diagnose you correctly as far as i recall, thats how i was diagnosed.

i got diasonoised with a colonoscopy. Told me then and there the results combined with my blood results.

Hope you get sorted soon x

I had a colonoscopy a year ago for routine checkup (when you're in your 50's they're recommended to check for colon cancer). Doc said I had a lesion on my intestines that looked like crohn's - but I had no symptoms. A year later, I started getting symptoms, went back to gastro doc and he ordered an upper and lower GI barium x-ray and blood test. He said if that didn't show anything, he would order an endoscopy. The GI barium x-ray showed "definite crohn's because of stricturing of the small intestine" and I think the blood test showed something but I don't know what specifically.

Good luck finding out!!

Based on my symptoms, my GI ordered a colonscopy, then did a biopsy on the tissue from the lesion/ulcer he found, was told back then that this was the only way to know for sure it was Crohn's or not.

mine was traditional... a colonoscopy and a lot of blood work...

My son was diagnosed via endoscopy (ileitis found) and elevate CRP and anemia along with clinical symptoms of diarrhea and weight loss.

You report two hemoglobin aic tests, one is normal and one is elevated. An elevated level would suggest elevated blood sugars, but since once is normal and one is elevated, I'm not sure. Were these two results taken at the same time? If you had diabetes, you'd have an elevated blood sugar fasting. Have you had fasting blood work or other chemistries that included a glucose?

I am confused by your report of splenic granuloma. Did they take out your spleen for some reason?

I live in Hawaii and have Crohn's and see dr. Scott Kuwada. I like him but like all specialists in Hawaii, very busy and often unavailable. I typically check in with another gastroenterologist in Seattle when visiting family. My doctor, Elisa Boden at Virginia Mason is fantastic and is quick to call me back when I have concerns or questions.

Now that you have insurance again you may want to ask for Humira and see what they say. My Rhuematologist was able to get me the assistance from the mfg. if you have insurance they will pay all but $5 of the co-pay. Also since you just can't stop the meds they will continue to provide them to you at no cost if you are to lose coverage again. They really just want the insurance $. I haven't gotten sick with a cold yet so I'm still a little afraid of what will happen without an immune system. But hey I won't be my own worst enemy for awhile.
My prayers to you.
Crohns, sjogrens, Rhuematort Arthritis, and now I'm on my 3rd round of testing for lupus. Not really wanting the biopsy.