Guest Blog Post 6 – Enterocutaneous Fistula (ECF) By Donna B.

18 Jul

I know I’ve said this before but it is still very true and poignant. We don’t plan for illness and when it happens we are too busy trying to pick up all of the pieces that it’s difficult to pay attention to the details.  

I recently received an e-mail from a lovely new acquaintance I made through my blog. Donna wrote to me to share her healthy story and how she was diagnosed with Enterocutaneous Fistula (ECF) and what she has to go through between diagnosis, prognosis and treatment. She was inspired and motivated to share her story because of her 8 year old daughter.

The reality is none of us, including me, would ever plan for a health issue. We don’t foresee ourselves or our loved one incurring a life altering medical condition so when it hits us we’re almost always unprepared.  I want to help bring awareness to the topic of external fistulas (specifically ECFs) and help others who are suffering to get help and feel comfort in reading a story from someone who’s been there.

The good news is we’re not alone. I’d like to share a few external resources I discovered that might help someone with ECF.

No insurance/co-pay assistance:
Patient Advocate Foundation
421 Butler Farm Road
Hampton, VA 23666
Phone: (800) 532-5274
Fax: (757) 873-8999

On Sunday Dr. Stanley spoke on the topic of Impact vs. Impression.  He put it in very plain terms…. an impression is what a person leaves behind like when he brags about his possessions or lifestyle. Often something people tire of hearing about. An impact is something that changes another’s life. We don’t always remember all the specifics of what the person did but we know that they impacted our lives in a positive way.

So how can we make an impact? We are to “Bear one another’s burdens” (Gal. 6:2)

It’s my hope that his message will encourage someone who has been diagnosed or living with ECF.

Guest Blog Post 6 – Enterocutaneous Fistula (ECF) By Donna B.

My name is Donna and I am a stay-at-home mother, going to college online, fulltime alongside my husband of nearly 10 years. I was motivated to write and help others because I believe in sharing my story; others who are in the same boat as I am will feel better about their personal situation and know they are not alone.I must let you know that I am not a cancer survivor. I have not been diagnosed with having any kind of cancer, at least not yet. There has been talk that I might have some sort of cancer, but after blood tests, endoscopies, CT scans, bronchoscopes and a colonoscopy, nothing has been determined, there is no known cause for my fistulas and I am still losing blood somehow. My doctor now thinks that I might have an autoimmune disease, but because I don’t have insurance I can’t go get blood tests done. My situation is unique because I had two enterocutaneous fistulas erupt, the first one in September of 2010 and the second one a few months later. The second one started out much as the first, a hard spot and the original fistula was misdiagnosed as ‘cellulitis’ and was treated with antibiotics which did nothing because it was not ‘cellulitis’ obviously as less than a week after I was treated with the useless antibiotics and more than one kind, mind you, the spot expanded up (like a balloon being blown up) and erupted during the night, spewing blood, pus and human waste onto my bed sheets. I woke up the next morning to it, knowing full well to expect it. I know my body really, really well.  

At that time, since I didn’t know about ostomy bags, I used gauze pads and tape to cover the opening and did that for a while until I found a new doctor (after going to the emergency room for it) and started seeing him on a regular basis for this new journey I had begun. A few months later, another hard spot developed below the original site, I went and saw my doctor. He was as befuddled by my situation as was the first doctor, but, instead of doing nothing about it; he went and got a bottle of what I am guessing was a local anesthetic and a syringe. He filled the syringe with the liquid and proceeded to poke and inject around the site, all the while I am screaming and crying in pain. Once the site was numb, he withdrew some pus and said it was just a site that didn’t tract down far and sent me to the hospital for a CT scan to determine if it was a fistula or not. The CT confirmed it was not a fistula. Well, that turned out to be incorrect about 4 months later as I started spewing pus from it and now it is a gaping hole, bigger than the top one. Still spewing pus, but that’s it, so far. I now wear two ostomy bags and I hate them. But they are much better than gauze pads and tape – which only cause the skin to break down and I would be in much worse shape than I am now, so I am very grateful for them. 

I will not have any kind of surgery to correct them, because to this point I have had 6 major abdominal surgeries, am not a great candidate for more, and I am afraid that the remaining three feet of small intestines that I have left would end up being taken out and I would end up in much worse medical shape than I am now. I have an 8 year old daughter who needs me to be in the best mental and physical shape as possible and I can maintain that, with an internal pouch or something other than what I have now, I am not so sure. So… 

As for valid resources, I would say contact your local American Cancer Society. They have free ostomy supplies and support. I found a local ostomy support group in my area through United Ostomy Associations of America, Inc. (UOAA). I also have an online support group called C3Life and another one with the Oley Foundation. I still haven’t joined the Short Bowel Syndrome support group; however I did find them on Facebook. I never knew there were so many different places that offered support and free or nearly free supplies for ostomates who have limited or no insurance.  Thank goodness, too because without these places, a lot of people would be in dire straits and that is no way to treat your fellow human beings. 

My inspiration and motivation for sharing my story is my 8 year old daughter.I am surviving this for her. Granted, I don’t have cancer, but I am suffering and am in pain every day. Until I get my insurance back and am on pain meds. 

Thank you for allowing me to share my story.

If you would like to write to Donna with questions please send your letters to me with subject line “Questions for Donna”.

With love and God’s Blessings,

Dee Dee

Email Me:

E-mail the techie behind the Chat With Dee Dee (Blog, Facebook & Twitter pages) who happens to be my daughter.

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Posted by on July 18, 2011 in Christian Faith, inspirational


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