The medical view of Eosinophilic Colitis:
WHAT IS EOSINOPHILIC COLITIS?
Eosinophilic Colitis (EC) is any colitis that becomes worse rapidly. In addition to the diarrhea, fever, and anemia seen in colitis, the patient has severe abdominal pain and presents a clinical picture similar to that of septicemia, where shock is present. About half of patients require surgery.
WHAT ARE THE SYMPTOMS?
The signs and symptoms of coli tides are quite variable and dependent on the etiology (or cause) of the given colitis and factors that modify its course and severity. Symptoms of colitis may include: abdominal pain, loss of appetite, fatigue, diarrhea, cramping, urgency and bloating. Signs may include: abdominal tenderness, weight loss, changes in bowel habits (increased frequency), fever, bleeding (overt or occult)/bloody stools, diarrhea and distension.
HOW IS EC DIAGNOSED?
Confirmation of Eosinophilic Colitis requires a test to visualize the large intestine. Flexible tubes inserted through the rectum (sigmoidoscopies and colonoscopies) permit direct visualization of the inside of the colon to establish the diagnosis and to measure the extent of the colitis. Small tissue samples (biopsies) can be obtained during the procedure to determine the severity of the colitis. Signs seen on colonoscopy include colonic mucosal erythema (redness of the inner surface of the colon), ulcers, bleeding and eosinophils present in a biopsy.
WHAT ARE THE TREATMENTS?
Both medications and surgery have been used to treat Eosinophilic Colitis. However, surgery is reserved for those with severe inflammation and life-threatening complications. There is no medication that can cure Eosinophilic Colitis. Patients with Eosinophilic Colitis will typically experience periods of relapse (worsening of inflammation) followed by periods of remission (resolution of inflammation) lasting months to years. During relapses, symptoms of abdominal pain, diarrhea, and rectal bleeding worsen. During remissions, these symptoms subside. Remissions usually occur because of treatment with medications or surgery, but occasionally they occur spontaneously, that is, without any treatment.
Irritable Bowel Syndrome, a separate disease, has been called spastic colitis. This name may lead to confusion, since colitis is not always a feature of irritable bowel syndrome. Since the etiology of IBS is currently unknown and possibly multifactorial, there may be some overlap in symptoms between IBS and the various forms of colitis.
WHAT IS EOSINOPHILIC COLITIS?
Eosinophilic Colitis (EC) is any colitis that becomes worse rapidly. In addition to the diarrhea, fever, and anemia seen in colitis, the patient has severe abdominal pain and presents a clinical picture similar to that of septicemia, where shock is present. About half of patients require surgery.
WHAT ARE THE SYMPTOMS?
The signs and symptoms of coli tides are quite variable and dependent on the etiology (or cause) of the given colitis and factors that modify its course and severity. Symptoms of colitis may include: abdominal pain, loss of appetite, fatigue, diarrhea, cramping, urgency and bloating. Signs may include: abdominal tenderness, weight loss, changes in bowel habits (increased frequency), fever, bleeding (overt or occult)/bloody stools, diarrhea and distension.
HOW IS EC DIAGNOSED?
Confirmation of Eosinophilic Colitis requires a test to visualize the large intestine. Flexible tubes inserted through the rectum (sigmoidoscopies and colonoscopies) permit direct visualization of the inside of the colon to establish the diagnosis and to measure the extent of the colitis. Small tissue samples (biopsies) can be obtained during the procedure to determine the severity of the colitis. Signs seen on colonoscopy include colonic mucosal erythema (redness of the inner surface of the colon), ulcers, bleeding and eosinophils present in a biopsy.
WHAT ARE THE TREATMENTS?
Both medications and surgery have been used to treat Eosinophilic Colitis. However, surgery is reserved for those with severe inflammation and life-threatening complications. There is no medication that can cure Eosinophilic Colitis. Patients with Eosinophilic Colitis will typically experience periods of relapse (worsening of inflammation) followed by periods of remission (resolution of inflammation) lasting months to years. During relapses, symptoms of abdominal pain, diarrhea, and rectal bleeding worsen. During remissions, these symptoms subside. Remissions usually occur because of treatment with medications or surgery, but occasionally they occur spontaneously, that is, without any treatment.
Irritable Bowel Syndrome, a separate disease, has been called spastic colitis. This name may lead to confusion, since colitis is not always a feature of irritable bowel syndrome. Since the etiology of IBS is currently unknown and possibly multifactorial, there may be some overlap in symptoms between IBS and the various forms of colitis.
The patients view of Eosinophilic Colitis:
Stacey says:
Starting in high school I had the urgent need to use the restroom...all day...every day. I had teachers who wouldn't allow bathroom passes...I lived in constant pain and fear of humiliation if I were not able to make a bathroom in time. The chronic diarrhea continued to get worse and by my thirties I had diarrhea everyday, typically using the bathroom 10-12 times by noon. Later, as an outside sales representative who drove 2500 miles per month I would starve every day until the pain from not eating was no worse than the pain from eating was going to be. When I switched to a job close to home, I was unable to drive the 2 miles to work without having to stop and use a public restroom. Sometimes I didn't make it....the horror of being a grown adult who couldn't control her bowels was devastating. Worse, doctors kept telling me it was stress which made me feel like a crazy person. Many family vacations were marred with the memories of me ruining everyone's fun because I would get so violently ill I had to get to the nearest restroom immediately and they would have to wait outside for close to an hour before I was well enough to leave. At age 38 an amazing doctor diagnosed me with EC. While my quality of life has improved since diagnosis, my life will never be normal as my food allergies limit what I can eat and even when I watch what I eat I still have flairs that can happen any time. Watching people eat what I can't or having people always accommodating my dietary restrictions make social interactions extremely stressful. I love to travel, but I have to starve in order to be able to do so without fear of getting sick. EC means always being surrounded by sights, smells and tastes that make your mouth water but you can't indulge...always having to explain why you can't eat...always feeling different or like an inconvenience...living with the anxiety and fear of getting ill in a public place or in front of a date or an employer or a client...being a burden to your family and friends...trying to be your best at work after a sleepless, pain filled night.
Melina says:
EC is something that defines me, my body and my life. It is something that has always plagued me growing up but I thought it was just "me being me" and that it was normal to feel that way and have so many GI sx. I found out later as an adult that my sx were not normal and was something caused by allergies and a rare disease called EGE and EC. My life changed forever then. Each day is different. I never know from one day to the next what my body will react or flare too. I feel I have come to accept what I have been dealt with but I wish I didn't have too accept it at all. This can be a very isolating disease. I miss eating foods that I love but which cause me pain and other symptoms. My body is always on edge, ready to attack. It is time to find a cure so we can stop the attacks and win the never ending battle against eos!
Noel says:
I don’t really look sick but I am. I have eosinophilic colitis (EC) a rare form of EGID. I got my diagnosis in July of 2011, should of made me happy to know what was wrong with me but honestly it has caused more questions then answers. Living a day with EC requires lots of medication (I take over 20 pills a day during a flair up, and several forms of daily steroids to just try and stay in remission), planning, reality(on my part), and be surrounded by forgiving people. Even learning too forgive yourself for the let downs and broken promises you cause, I have had a lot of those lately.
Too avoid embarrassments I must plan to have my last solid food item anywhere from 6-12hrs from when I need to leave. Yes, that means I often will go 3-4 days without solid foods just to try and accomplish things I need to do, to be a mom and functioning, productive adult. I also know that I need a few extra hours in the morning before going anywhere to hopefully save some of my rapidly shrinking dignity. Even with all that well planning I often have to cancel at the last minute or just decline offers to go places from the get go. (Imagine how long many of your friends would handle this) I avoid friend’s homes that only have one bathroom; I turn down almost all invites that include food because living with EC, food (yes that thing we need to survive) is my Kryptonite. Nothing beats being the hungry, drooling and tummy rumbling girl. While everyone else is eating and not even thinking twice about anything other then yummy food, I look for the closest escape route to a bathroom and at my empty plate.
Even with all of that I try to remember I make my own silver linings with this disease. I got involved with a fantastic support group to no longer feel alone. We are now a family, but the best kind we don’t judge each other and understand what I mean when I say it has just been a bad day. I must fight for fair treatment as an adult with an EGID. Eosinophilic diseases are in the infantile stage of research, so I must research and read any article I can get my hands on, to try and connect any dots so I can to help speed up my own remission. It is not an easy life but I will make it the best I can till there is a cure.
Angela says:
EC means never knowing, if something is going to be safe to eat, or somewhere is going to be safe, or a day is going to be a good day or if everything is going to set me off. A car trip that would normally take one hour, might turn into two hours or longer on a bad day, depending on the road and the number of available bathrooms.
It also means sympathy, the real kind, fake kind, and the kind where people think you are making stuff up to get more of it. So I've grown to dislike all three kinds, even the true kind, even through it might not be fair to the person who truely feels it. At least I'm being honest.
EC has made my life very complicated, and I'm very happy to have people in my life to help me deal with it. I don't know what I'd do with out them :)
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LARGE INTESTINES
e.I.N.F.O.R.M.E.D.
DIARRHEA
EOSINOPHILIC COLITIS
DIAGRAM
