Gina

If you have IC, you need to be seeing a urologist (one who specializes in treating IC patients - -not all urologists are that knowledgeable about IC) ....had IC for over 10 years, been through lots of ups and downs, but have a good dr now...also if you are having bloody stools that are not going away, you need to see a GI specialist ASAP (pronto, girly!)  and they will likely give you a scope just to make sure you are ok in your GI tract.  If your general practitioner is not referring you to these drs. and getting you in, you likely need to find a new GP.  Do you have to have referrals for your insurance?  You sound like a mirror of me as far as problems go!  I see an immunologist, a urologist, a obgyn who is knowledgable about IC, a GI dr, a pain specialist...know it sounds like a lot of drs., but you have a bunch of problems going on that need attention!!!!    Good luck and get the help you need, its going to benefit you even though it is easy sometimes to just want to throw your hands up (been there too).

Hello -

Well, I think you're both right - I need a new GP. I actually haven't seen her in almost a year. I just see the nurse (not my choice).

So, here's the scoop - I think this was on the old forum somewhere . . .

Two GP's ago and three years ago, I was having bloody diarrhea (along with GERD, non-allergic rhinitis, hives, flushing and joint pain - the last few were nothing new).  

That old doc told me to eat yogurt.  Sigh. So, I found my current GP. She gave me a CT scan that came back almost completely normal.  She also gave me a HIDA scan (which I had 10 years earlier). So, like a decade before, she sent me to (ironically) the same surgeon to once again have my gallbladder removed. And once again based on all of my symptoms, he wouldn't do the surgery.  He referred me back to my old GI that I had 10 years ago for a colonscopy. According to him, my colon 'looked great' and he sent the sample for microscopic testing - which came back with a high count for mast cells.

He then called me two weeks later and referred me to an allergy/immunology doctor. I see him now every six months. My GI has never had me back.

The good thing about the nurse at my GP is that she does know of other people with cutaneous mastocytosis.  She's the one that prescriped Gastrocrom for me and got me an epi pen (I have really bad reactions to just mosquito bites). She also is the only one that thinks I have systemic masto but doesn't understand why I would need a bone marrow biopsy.

But, my immunology doc and my GP both say I would be a lot more sick if I had sysemic mastocytosis. The GI thought I had the systemic version - that's why he referred me.

So, I don't know what to do.  Just this year- January was three weeks of horrendous sneezing and running nose; a week of diarrhea (bloody towards the end); February was almost three weeks of urinary pain; March started off with a bad bout of acid reflux and finished with what reminds me of the ulcer I had awhile ago; April brought severe joint pain and swelling - which was ironically relieved by a bad case of vomiting and diarrhea (my bowels try to swell shut). So, the GP initially gave me a course of prednisone (I also had erythmous nodosum nodules on my legs, too), then the joint pain came right back, so she refilled my Entocort rx; that wasn't quite cutting it, so then she gave me 80 mg dose/shot of Kenalog.

As for Rx, I take gastrocrom, fexofenadine, loratidine, singulair, ranitidine and hydroxyzine.  I also take loestrine and I'm supposed to take vitamin d and iron supplements.

That's it in a very big nutshell. I just don't know what to do or who to call when I'm not feeling well.  The closest specialist would be for me to go to Mayo in MN. My health insurance recently added them as in-network. But, I would like to still have a GP that I could trust them working with.

Thanks for the help! My immunologist wants me to come in next week.  While the nurse at my GP at least understands mast cells, she has a tendency to just blame everything on them.  I suspect that happens to a lot of us?  She and the other nurses don't seem to know how to read blood work and lab tests. That's kind of a concern. I have tech reports where it says further testing should be done - and they just scroll by the notes and say everything 'looks great.'  Plus, it's been 5 weeks since they were going to refer me to a rheumatologist and 3 months since they were going to refer me to a urologist.  

In case you want to know what meds I take: 180 mg fexofenadine, ranitidine (150 3x/day), 10 mg singulair, loestrin, 100 mg gastrocrom 4x/day, veramyst, 10 mg loratidine, 25 mg hydroxyzine, 3 mg entocort 2x/day. I also take 1000 iu of vitamin d/day and I'm supposed to take iron supplements 2 x/day but I don't.  

What can someone take for pain when you can't take NSAIDS? Extra Strength Tylenol is not cutting it.

Thanks again for everything, Gina

Ramona -  light bulb went off when you mentioned the sulfate in conjunction with the iron.  I always have problems with sulfates.  No wonder. Ok, that must have been some brain fog! I've just been trying to eat more meat - but I have always had a hard time with it.  Take care! I'm ready to put my feet up too!

Gina

Gina,

Have you read anything about Mastocytic Enterocolitis?  It sounds like you have already been diagnosed with it, although I don't know if they called it that.  There is a regimen for clearing it up.  Here is the link to my doctor's website.  He's been pioneering treatment for this along with Dr. Miner in Oklahoma.  It's recently been added to the Rare Diseases section of the NIH website, but I suspect it isn't really very rare!

The treatment I did for ME following a parasitic infection, was:

2 vials gastrocrom, 4 times/day on an empty stomach, if possible
60 mg. allegra, 2-3 times/day (a.m. mid-day, and at night, if needed)
10 mg. cetirizine (at night)
20 mg. famotidine (at night)
Align (probiotic) once/day
Bromelain, 2000-2400 gdu before meals

I also followed a low-histamine, low-acid diet.  Dr. Lewey says that he has proven evidence of this disorder in 400 patients so far, and that he finds a nearly complete reversal of symptoms in 8-12 weeks.  Of course check with your doctor before starting anything new!