gutless_mystery
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I Love YaBB 2!
Posts: 57
INDIANA
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First I'll start off with my health hx: Crohn's disease diagnosed in 99 when had to have emergent bowel resection. They took my entire ileum (end portion of small bowel) and cecum (beginning 6 inches of large intestines). Since then I've had a lap removal of gallbladder, lysis of adhesions, and abdomenal abcess removal x2 (which was subcutaneous with removal of stiches from bowel resection that never dissolved...they removed these sutures at the time). Other health issues include: migraine headaches, gi bleeding, daily abd. pain but stopped taking Crohn's meds 5 years ago without too many problems, elevated bp at times but never dx with htn.
I am a hard working 32 yo man who has always worked no matter how sick I've felt...even worked day after surgery.
In January I started having outbreaks of hives all over my body with intense itching and burning. It happened several times a week and for no apparent reason. I tried to tie it to food or environmental exposures and couldn't find any correlation to these outbreaks. My wife is a nurse and had me take Benadryl and that seemed to take care of it. In Feburary they started coming on more frequently and more intense...my hands and feet started feeling like they were on fire and swelling. Then they progressed to angioedema where my ears, face, tongue, and throat swelled....so finally off to the family doctor I went. He gave me a Rx for epi pen and set me up with an allergist and immunologist. I got into see him in March. He did all kinds of labs and allergy testing. I am not allergic to anything per scratch test and per blood testing. He put me on several antihistamines, prednisone, inhaler as he thought I had asthma and thought it would fix me. Well, it really didn't help entirely but it did decrease my episodes to weekly instead of almost daily. I started trying to pay closer attention to when they happened and what I ate, did, ect. The only thing we could connect it to was that after eating if I had to poop and couldn't get to a bathroom fast enough I'd have severe abd cramping. Then my ears would start burning and swelling and then my whole body was on fire inside and out, I would start to have tongue and throught swelling and difficulty breathing...sometimes with wheezing and sometimes without. The doctors were all confused because they weren't sure why the meds weren't controlling this. So every time I went to the doctor we added new meds....did I mention that I hate taking meds and if I weren't frightened for my life I wouldn't be taking anything? They started looking into things more and more lab tests. Luckily on one of my office visits I had a reaction while in the office and they actually witness my anaphylaxis and could dx it. They drew a histamine level right then and it was sky high....not sure now why they didn't draw a tryptase level. So then we started trying to rule out all of the bad boys (carcinoid, pheocromocytoma, masto). He dx me with IA but said it was peculiar that he couldn't get me controlled with all the meds and that my gi involvement was strange too. He had me go back to my gi who I hadn't seen for 5 years to get a colonoscopy.
So....after all the testing we found: 24 hour for metanephrines were elevated 24 hour urine 5hiaa normal WBC always high- range from 12-20's PLT's on higher end of normal HGB normal liver enzymes elevated bilirubin elevated tryptase less than 20 histamine x1 sky high, other times normal upper enoscopy=gastritis (H. Pylori neg) colonoscopy- no active crohn's but one small ulcer at anastamosis site ct abd during spell- swelling and narrowing at anastamosis site and free pelvic fld octreotide scan neg mri brain neg except sinusitis anti IGE receptor and serum IGE= high vit D 25 hydroxy 32 with 30 being low end of norm complement ch50 = high c4 complement=normal
Have been to the ER for anaphylaxis between 5-10 times since April and have not gone to ER unless epi pen and (extra med care package of 50 Benadryl, 50 prednisone, clarinex, albuterol inhaler) was hospitalized due GI prep prior to colonoscopy--threw me into anaphylaxis due to abd cramping hospitalized for a week and during that week had 4 anaphylactic episodes (one on admit during intense abd pain (partial bowel obstruction from swelling) x2 from bowel prep for octreotide scan, and x1 from Xolair injection.
From there I was sent to Cleveland Clinic where I saw allergy/immunology and endocrine....more lab tests and clonipine supression test....alll coming up normal testing for all kinds of autoimmune disorders ect. had an anaphylactic episode on way home from cleveland and ended up in ER again...this was end of October. I went on histamine depleted diet for 3 weeks and just did a 24 hour urine histamine and serum histamine..awaiting results and then had yet another reaction last week. They wqnt me to see a GI doctor at Cleveland but can't get in until Jan.
Meanwhile I found this site and today my wife called and made me an appt with dr. Cem Akin for Jan. We are gonna make the 14+ hour trip to see him to hopefully get answers.
Meds I'm on: Prednisone since April now 30mg qd Gastrocrom qid zyflo 600mg po bid singulair 10mg qd zyrtec 10mg qd advair inhaler 2 puffs qd albuterol tabs 4mg qd loratidine 10mg qd ranitidine 300mg qd phenergan 50mg qhs omeprazole qd probiodic qd
for flares: 50 benedryl, clarinex x1, 50mg prednisone, albuterol inhaler prn, epi pen
IV flds, pepcid, benedryl in ER generally helps
Allergic to iv contrast dye, ibuprofen, aspirin, and xolair
Anyone have any ideas or help for me?
I'd like to find out if there are any tests I should have done prior to Jan for my appt with dr. Akin
Sorry so long....I think I even left a lot out...I rarely get hives anymore and it goes straight to anaphylaxis....really scary for me wife and 5 young kids.
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