Doctors Can't Figure it Out

[cantfigureitout]

I have had almost every test that I can think of and no one can figure it out...

Initial Symptoms: Lower Abdominal Pain on the Right Side, Fatigue, Dizziness Spells, Increased Sensitivity to Cold, Extreme Constipation (Close to 10 days without going), Chills, Lower Back Pain (Disappeared after emptying my bowels for colonoscopy using GoLYTELY), Experienced Pain in My Joints All Over my Right Side Last Saturday (Seems to have resided)

Now: Along with other symptoms, Nausea & Vomiting (Dry Dark Blood, mucus like), Fatigue and Dizziness Spells have gotten very bad, Chills have escalated, Haven't had a bowel movement since my colonoscopy with a feeling of needing to go always lingering. Pain is still present in lower right abdomen (comes and goes, can be severe, but usually just hangs around being tender) but not as severe. I just want to sleep and in a way not wake up.... I don't want to go on feeling this way. Also, I have noticed my face is breaking out recently with mostly cystic like pimples and even some around my lower back.

Blood Test Outstanding Results: TSH - 5.88 and elevated white cell count (Sorry, don't have the exact for that)... Also can't see if they did a CBC... looks like only a WBC
CT Scan: Nothing Abnormal detected
Small Bowel X-Rays: Inflammation of last part of small intestine
Colonoscopy: Mild Iletis and Erythema in Proximal Ascending Colon

I have maybe had four full meals in the past week and a half due to the fear of what may be going on in my system and how it may exit.

I am beginning to lose hope... Now the docs want a stool sample to test for Shiga Toxin 1 & 2, CDIFF, Cryptosporidium, and Giardia... The problem is that I can't produce a stool sample (unless they make me drink that GoLYTELY crap again). Also, these diseases that are mentioned usually cause diarrhea and I can tell you that I do not live in unsanitary conditions.

After the colonoscopy they said Crohns, however, due to the lack of granulomas in the biopsies they are ruling it out as of right now. I was hoping we were finally getting somewhere with the diagnosis but I guess not.

Any ideas guys and gals? Starting to loose my mind. I hate being at the hospital and do not want to be labeled as a hypochondriac. I just want to start feeling better.

Other abnormalities noticed: Severe sensitivity to raw vegetables

 

[Clash]

Welcome to the forum I'm sorry to hear you are struggling. I would maybe ask for a second opinion as even though granulomas are the icing on the cake for dx'ing CD they are not found in all cases:

The diagnosis of Crohn’s disease depends on multiple clinical, imaging and pathological criteria (1). An epithelioid granuloma, detected on microscopic examination of an endoscopic biopsy or surgically resected specimen, has been considered an especially reliable marker of Crohn’s disease. Indeed, a number of histopathological classification schemes list criteria for a definite, probable or possible diagnosis, with the presence of epithelioid granulomas indicating definite Crohn’s disease (2–5). However, in most patients with Crohn’s disease, granulomas are not detected

My cell phone is being ridiculous and won't let me post the link. But Google PubMed crohns and granulomas.

I hope you find answers soon

 

[wildbill_52280]

if you are not eating, then that may explain why you don't have bm's.

what are you eating when you did or do eat?

 

[buttER]

Dear cantfigureitout
Hang on in there. That sounds horrible. I can understand the docs wanting to rule out any bacterial or parasitic infection (but why didnt they do that first before all the invasive tests?).

I don't know where you are but it sounds like a very conservative way of treating. I had a similar story: inflammation found in the colonoscopy but because nothing was confirmed on the biopsy the doctors told me there was nothing wrong with me and sent me home.

Eventually I managed to see the doc who did the colonoscopy (an unofficial appointment), and he was very surprised I was not given any treatment. He made recommendations to my primary GP to start treatment for IBD.

Most of the battle is finding a doctor who takes you seriously and is willing to treat you. You might have to find a different doctor, or as I did find one who you have seen and you think may help you. If you think some results are being ignored or you are not happy with the standard of care there may be (should be?) a person in the hospital who is there to represent such patients, and you may be helped that way (that is how I got my unofficial appointment with the endoscopist).

I know it is so tiring and takes up alot of energy that you don't have. Please don't give up. Have you got someone to support you?

Let us know how you are getting on.