My name is nannyboz and I'm today's KosAbility diarist. I'll be talking about hypereosinophilia and the form I have as named in the title of the diary ( didn't want to have to type it again!).
KosAbility is a community diary series posted at 5 PM ET every Sunday and 5 PM every Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Hypereosinophilia is defined as having too many eosinophils, part of the white cell count, in the blood. While there are numerous manifestations of the disease mine attacks my small intestine. Let me tell you about it and then we can have a discussion.
For as long as I can remember I have had a "nervous stomach". I always figured it was just me and worked around it as best as I could. When I was in my early twenties I had a prolonged episode of sudden onset diarrhea and a med student neighbor told me I really needed to check into it. In the course of being worked up I was told I had Eosinophilia but nothing more was said or done about it and no one connected that to the ongoing diarrhea. The symptoms eventually subsided and I figured it was just that good old nervous stomach finally settling down.
This type event happened many times over the years and I had more upper and lower GI studies than I can count always being told everything was normal and that I had "Irritable Bowel Syndrome". In other words, I was a little nuts ( never spoken but always intimated ). I also had a bone marrow study during that time to determine if the eosinophilia was coming from that source as opposed to parasites ( I didn't have them ) or some other outside source. My bone marrow was found to be the source of the disease.
As time went on testing began to include sigmoidoscopies and colonoscopies which also came back normal. Not to brag but one Gastroenterologist told me I had a "beautiful" colon! How could a girl resist such a complement? One physician even treated me twice with Flagyl, without testing my stool for parasites, telling me I shouldn't travel so much!
Finally, I had a terrible flare up of diarrhea, twenty five times a day or more, which almost put me over the edge since I was an OR nurse and it was horribly difficult to be in surgery and have to keep running to the bathroom. I became so dehydrated that one of the surgeons actually gave me IV fluids in the Pre-op area during the work day. I was totally humiliated because there was no reason for all of this, or so I had been led to believe.
Another colonoscopy was scheduled but a new, young partner was going to do it since my regular doc was going to be out of town. This wonderful man saw my "beautiful" colon which looked absolutely normal but decided to biopsy it in case something microscopic was going on. God bless him! He called me a few days later to tell me I had "collagenous colitis", that it was not fatal or a precursor to cancer and that I needed to see a specialist.
This is when my life changed. The specialist, a Gastroenterologist who dealt with rare diseases, was going over my history when I mentioned the hypereosinophilia, as I did to every physician I ever saw during first visits. His eyes widened and I asked if that mattered and he couldn't wait to look at the microscopic slides made from the biopsy of my colon. He called me to come to his office the day he received the slides and showed them to me. The colon was prolific with eosinophils which were causing the diarrhea. Once I stopped crying with relief to discover I wasn't crazy I began to learn from him about my disease and what the treatment would entail.
First off, the disease I have manifests itself in what are described as "flares or flare ups". These most often occur in spring and fall which explains why I wasn't experiencing symptoms all the time. Other symptoms are an itchy rash on the abdomen, a dull ache in the lower right side and arthritic like pain in the joints, without swelling. I had every one of these and never connected them. Once again, since I figured I was a bit crazy I thought these symptoms were part of the outward signs of that. Hypereosinophilic colitis is "very rare" however this doctor wonders about that because so often biopsies are not taken on what appear to be normal colons and you MUST have those results along with an elevated eosinophil count to make a proper diagnosis.
Newly diagnosed and not crazy the doc worked out a treatment plan for me. Initially I took Gastrocrom and Prednisone which totally controlled all the symptoms. He taught me how to assess my symptoms or lack of and to basically communicate to him where I thought I was and what I thought I needed to do. For example, if I had been on the meds for awhile I could let him know I wanted to wean off them and see how I did. This worked beautifully and still does. I no longer take Prednisone because a new drug, Entocort, became available and limits the cortisone to the intestines rather than the bloodstream which is a lot safer for bone health ( Prednisone is a major contributor to osteoporosis ).
Since being correctly diagnosed nine years ago I have come to understand that I will always need to be on Entocort and Gastrocrom. I am unable to be off them for more than two weeks without symptoms reappearing. Some people are able to discontinue the meds but it isn't known why since so little research is available about this disease. I am blessed to have healthcare coverage because there are no generics for these two drugs and if paying out of pocket would cost me in excess of twelve thousand dollars a year.
So, here's what to do if you think you may have this or are simply curious about it and the other manifestations of hypereosinophilia:
- Google Hypereosinophilia, there is a ton of info
- If you have the symptoms I have described, even if not all of them, and have been diagnosed with IBS ask your physician to do a "CBC with differential" to see if your eosinophil count is elevated.
- If the count is elevated and you have the symptoms talk to your doc about a colonoscopy with a biopsy.
- Never do what I did and assume you are the problem and your nervous stomach is how that shows up. There are reasons for ongoing diarrhea and stomach rashes and achy joints and dull pain in your right side.
- Let me know if I can help in any way, I'll give you my email addie.
Thanks for reading and letting me share. I never considered myself disabled, still don't, but this disease sure does impact your life in painfully negative ways and if this information can prevent that for even one person I would be thrilled!