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Mastocytic Enterocolitis Girl

Hello everyone. My name is Amber and I am from Florida. I am now 26 years old, have been dealing with ME for 3 years now, was the first in my area and as of now I still believe that I am the only one. I am so excited to have FINALLY found a group here that has at least heard of my disease and some with experiences.

Crohn's disease runs in my family and I have always been a sickly child lol. Always stressed about everything (for the fear of getting sick). I always had mild stomach problems as a child, contributing it to just the stress.

When I hit about 22 years old, I started to experience EXTREME stomach pain every time I ate something, I would be in the bathroom for up to 45 minutes. My first 'attack' as I refer to it, was at a local Walmart, in which I vomited, had severe D, and passed in and out from the pain. After it passed I was fine. Just really tired from the experience. Months passed and I started to experience this same onset every once in a while.

Then, it hit me. Seemed like everytime I ate something, especially greasy, fried, fatty, or acidic, I would get sick. I lost 30 pounds in nearly 2 months. I started not leaving my house in fear I would have an attack in public. I finally got insurance and went to see a local GI doctor. After one visit, he wanted to do a colonoscopy. He suspected IBS, but the extreme weight loss and exacerbated pain made a red light pop up that something wasn't normal.

I was very sick. I cannot stress this enough, I seriously thought I was going to die. I had my colonoscopy and 24 hours later, I could not eat ANYTHING. I had to have my doctor paged bec to me this had turned into an emergency. He told me over the phone he couldn't discuss over the phone with me, but what I had was very rare and he had never diagnosed it before. He told me to only eat bland foods and go to store to pick up Zantac 150mg and Allegra. 2 Times a day. I finally saw him days later, in which he had time to research the disease and educate me on it. Not that he could really tell me much more then I could have found on the internet.

The medications seem to help somewhat, but I still do seem to have bouts. Stress is a big trigger, but the doctors said I developed general anxiety disorder due to the constant fear of having an attack. I still deal with that. I have not found a great diet as of yet, and unfort. back injuries from a car accident dont allow me to exercise like I would like. Sorry this is so LONG! I just wanted to tell my story and share and hopefully someone can help me deal with this. Tricks, hints, ideas, suggestions, lol would all be great. Thanks!
 

mikeyarmo

Co-Founder
Welcome to the forum Amber! We are glad you have found us also :).

Are your symptoms similar in any way to your other family members?

I am glad that medication and diet are helping you somewhat to deal with your symptoms. Stress is a major trigger for many people and I know it is not always easy to manage.

Are you able to walk without pain? That is a low impact form of exercise that can also help reduce stress.

We look forward to seeing you around more. There is a lot of content throughout the fourm so that is the best place to look initially for tips and ideas, but we are happy to answer any other specific quesitons.
 
Welcome to the forum Amber! We are glad you have found us also :).

Are your symptoms similar in any way to your other family members?

I am glad that medication and diet are helping you somewhat to deal with your symptoms. Stress is a major trigger for many people and I know it is not always easy to manage.

Are you able to walk without pain? That is a low impact form of exercise that can also help reduce stress.

We look forward to seeing you around more. There is a lot of content throughout the fourm so that is the best place to look initially for tips and ideas, but we are happy to answer any other specific quesitons.
Unfort. I am the first in my family to experience this. My grandfather has Crohn's disease very bad along with other problems; general anxiety disorder, panic attacks and back/neck problems.

I can walk sometimes, just depends on how my neck/back are acting.

I was in a serious car accident in 2007, messing my back and neck up permanently. I am still in process of having a doctor dx me with fibromyalgia.
I was on some serious OPIODS for a while. I believe the stress from this really aggravated my condition as well as the meds.

On a rare good day, I can zumba to an extent. But that has not gone well lately with this new arm weakness and neck pain. I can walk a small distance, I use the dog as an excuse and necessity to at least breath lol.

I just picked up some new stuff today to try.... Stress B-12 Vitamines and Metamucel and see if this will help things on top of my other problems.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome :)

I've read up on Mastocytic Enterocolitis quite a bit, not that it takes very long with the information that is out there. What likely happened is your doctor did a biopsy, they stained it to check for mast cells, and it came back that they were high so they diagnosed you. Frankly, I'm not at all a fan of the ME diagnosis unless everything else has been excluded. For example, have you had your small intestines checked for active disease via a pill cam, CTE, MRE, or other means? ME is a diagnosis for when there are no other reasons for there to be chronic diarrhea. If they haven't been thorough, especially since there is Crohn's in your family, then I would ask them to evaluate your small bowel.

All my best to you!
 
I wasn't having a lot of the signs of Crohn's and no I have not had the other tests. I do know that as soon as they started giving me the zantac and allegra, 80% of my symptoms went away. I still deal with constipation and sometimes stomach pain with D, but I have never been in the pain I was in before I was diagnosed. I was also explained to that the stains that they use are specific to ME, not just mass cells. Mass cells are mass cells I think no matter where they are. I have not had the need I suppose to really to seek my GI again since the diagnosis and meds. I honestly think I need to just work on my diet and get my neck and back into shape, so I dont have to take OPIODS that I think add to my stomach ailments. I just never questioned the doctor just bec the meds worked immediately.
 

David

Co-Founder
Location
Naples, Florida
If you're comfortable with the diagnosis, that's great :) I'm also super pleased to hear you're feeling so much better!

Opioids can also lead to constipation if nobody told you that.
 
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