Join Date: Apr 2010
| | Mastocytic Enterocolitis, Rare Disease
So I guess I should actually take the time to fill everyone in, so we're all on the same page, and maybe there is someone else out there that can help me? Back in November of 2006 I was in a pretty bad car accident. I was injured to the point where it was hard for me to find jobs, caused me to lose jobs, and lose my social life completely. I had a herniation that touched my spinal cord in the middle of my back, scoliosis, and reverse curvature of the neck. This, caused so much pain and discomfort, and made it hard for me to continue doing the things that I loved. I saw many doctors, giving me many different medications to ease the pain. Then, as the years went by, I started getting noticeably ill, possibly from all the different meds? I mean, I was on some pretty strong cocktails of meds, some that could really do damage. Then I reached a point where my lower back began to hurt, causing 'sciatic' pain down my right leg. Lets just say, I was in so much pain, I would cry, not be able to walk, and have the hardest time performing normal life activities. I got so stressed and became scared to even go out with friends and family anymore, for the fear of what I thought was side effects of the medications that I was on. Experiencing one of my attacks: violent stomach cramping, vomiting, crying, cold sweats, and blacking out from pain, nearly everytime I eat something. This became eventually, an everyday symptom, along with lower back pain. As years pass coming into this year, my attacks become more frequent. I had already seen Nuerosurgeons, chiropractors, general health care providers, all tell me that through the MRIs and Catscans, there was nothing to be seen in my lower back that should or even could be causing the lower back pain that I 'said I was in.' They began to implant in my head that this whole condition of my pain was in my head. Well, I began to get more ill over the last couple of months, 2-3 months before my wedding. I was unable to eat a lot of foods, constant painful attacks, vomiting, I lost 30 pounds before my wedding, my dress didn't even fit me correctly. About a month ago, I began having more severe attacks, and I started barely being able to eat, and I was spending a lot of time in the bathroom, losing a lot of nutrients and my sanity. I was diagnosed previously with General Anxiety Disorder, and my Gastro doctor was pretty sure that I had Irritable Bowl Syndrome. Crohn's disease and IBS runs in my family, and at the rate I was losing weight and the symptoms I was having, I was practically wasting away. I was tired of all the meds, all of the doctors, the lack of time out with friends, etc. So finally, I set up a colonoscopy, which was an entirely fun procedure let me tell you! But I will leave that for another time....I had this procedure done on a Tuesday, and by Saturday, the 'side effects' had not seem to wear off, but to have gotten worse. I was in so much pain, and I was too the point of not eating anything but green sugar free jello. I had my doctor paged, and when I talked to him, he put me immediately on meds and told me no dairy products and only eat soft foods. I had to wait to talk to my doctor on Wed, and on my way there, I was scared, because nothing was said about my condition, just that my doctor sounded concerned. Well, I have been diagnosed with a very rare autoimmune colon disease called Mastocytic Enterocolitis. I am the first one in the area to be diagnosed with this (go me!) and most doctors have never even heard of it. My doctor had to spend a couple of days researching and making phone calls, just so he could know how to explain to me what my condition was. So, what is this disease and what is my verdict? The technical aspect of this disease is this: Mastocytic enterocolitis (entero=small intestine, colitis- colon + -itis= inflammation) is a newly discovered disorder defined by the presence of increased mast cells in the intestine. Mast cells are a type of immune cell. They are involved in allergy reactions, infection fighting and nerve regulation in the body. They have numerous granules that contain a variety of chemicals that mediate body reactions i.e. chemical mediators. Histamine is one of the main chemical mediators in mast cells that are released when mast cells are triggered. Mast cells present in the superficial intestinal lining or mucosa in small numbers except when there are parasites, food allergies, increased stress or the presence of other chronic inflammatory bowel diseases such as Crohn's disease or ulcerative colitis. When mast cells release histamine and other chemicals, this irritates or inflames the bowel making it more permeable or leaky. This can set up a vicious cycle of pain and further gut injury.
Basically, I am allergic to food, and I have a low immune system, so I can't be around others that are sick, it could hospitalize me. I am on medications that I have to take 2 times a day for the rest of my life. It is a chronic illness, and can be painful, but can be expected to live a somewhat normal life, just have to change what and how I eat and of course, take my meds. This disease also effects my bladder and other organs in my body, so sometimes making plans will be hard since, I will now be living day by day. This disease has only been talked about for 2-3 years or so now, and a lot of research still has to be done. My doctor just wants me to keep in touch on a monthly basis to keep him in the loop, so as new break throughs come through, maybe one day I could be completely symptom free. It's very hard for me to go far from my house or places with bathrooms, etc. so I am sure you can see where this would be difficult.
I would like to know if there are others out there. And, what medications are you on, what can you eat? Special diet? Are other body parts/organs effected as well? How old are you? Hold long have you been dealing with this disease? Etc. Thanks!