Diagnosed with Mastocytic Entercolitis, Bile absorpers make me sick, help!

[rollingrfarm]

Hello:
I was diagnosed with mastocytic enterocolitis about 5 years ago. My gastro doc, who is now retired put me on chloestyramine. It worked great until about a year ago when I started getting terrible stomach aches and gut paralysis after taking it. The pain and paralysis (which I followed with milk of magensia which caused additional problems) got so frequent that my family doctor put me on oral solutions of cromolyn sodium. It would kick in by about 2pm but I would have 6 episodes of sudden D before then. I went back to my gastro clinic only to find my doc was retired and the new kid was not very familiar with ME. He put me on welchol. The first morning I took only 1 of the 2 pills and got a terrible stomach ach and nausea. I'm searching for relief as my job requires me to often leave the house early in the morning and work in areas where toilets are not available. Currently I am taking the cromolyn sodium 4 times a day, Zyrtec, benedryl at night, ranitidine and famitidine. I desperately need to be able to get up at 4 am and leave the house and not have my gut give me 30 seconds to find a toilet!:sign0085:

 

[David]

Hi there and welcome

Wow, it seems like you were likely one of the first people in the world to be diagnosed with ME.

Have you tried psyllium husk as an absorber?

It's good to have you here

 

[rollingrfarm]

My gastro doctor took a sample during my colonoscopy and told me I had 2-3x the number of mast cells. When he was examining me, he was very surprised at the amount of bile in my colon. I also have chronic sinusitis and a skin disorder on my feet which is likely mast cell related.

I never heard of psyllium husk. I live in a very rural part of our state and am basically 2 hours from a real city. Where can I purchase psyllium of the proper quality? I will see what I can find out about it here on the site. I have ended up here when I realized that there were no doctors that could help me, and more importantly that seemed interested in helping me.

Any suggestions on where to seek help in Little Rock, or if need be, Memphis, would be appreciated.

 

[David]

None of the doctors in our doctor directory from Arkansas are member reviewed yet, but you could try calling the ones close to you and asking if they are familiar with mastocytic enterocolitis.

As for psyllium husk, there's always this option. But first give that thread I linked in my first post a full read through if you haven't

 

[David]

I see from the psyllium husk thread that it's working so far, that's great! You requested addition support, what else can we do for you?

 

[rollingrfarm]

Gosh, I didn't know I requested additional support, I apologize. I would like to help others with my condition just as you have helped me with such a simple solution. Thank you.

 

[David]

Nothing to apologize for! If a thread gets 3 or fewer replies we coded it so that you get an email asking if you want additional support. You must have clicked on the yes link No big deal though!

 

[kgiles]

Hi! My daughter (19) was just diagnosed with mastocytic colitis. She has had stomach pain and d for about 5 years. She also tires easily. She also has had chronic hives since she was about 12. Could ME have anything to do with the hives?

 

[David]

My first question would be, have they evaluated her for Systemic Mastocytosis?

Mastocytic Enterocolitis is characterized by too many mast cells in the intestinal tract. Mast cells release histamine. Hives are often the result of an allergic reaction and are the result of cutaneous mast cells releasing inflammatory mediators that include histamine. That she has both makes me wonder about Systemic Mastocytosis.

 

[kgiles]

Thank you so much for responding. After reading more about it. I wondered also. This is new so there's a lot to learn. How would they test for systemic? How would it be treated? Is there a difference in mastocytic entercolitis and just mastocytic colitis or is it the same thing? Thank you.

 

[David]

Mastocytic enterocolitis and mastocytic colitis are the same thing. As for systemic, I'm not versed enough on it to answer your other questions. I just know the symptoms as I like to know all the potential differential diagnoses for the diseases we see here. Sorry