CSS: Always searching for answers

Joan Miles
Pennsylvania

July, 2006You know when you feel like everything is right with the world, everything is going the way it should, everyone is happy, etc? I think if/when you hit that point in your life, you’re bound for some troubling news. We’re put in these situations to really make us stop, and really think about how things REALLY are.

I’m going to make this as short as possible, because, like most of you, I’ve been dealing with health problems for quite some time. Hopefully someone, somewhere, will read this and have something in common with me. Just know that you are not alone, there is hope and hopefully this too shall pass.

I’m 37 years old and have been dealing with health problems since 1999. I am the mother of 2 very healthy and energetic boys. Connor is 7 and Zachary is 4. Connor is my marker. Everything started a couple of months after he was born. My symptoms started with heartburn. After endoscopies, 24 hour pH study, manometry testing and a laporoscopic nissen fundoplicaion, that problem was resolved.

Around the same time this was happening, I had 3 trips to the ER with breathing problems (after having taken Advil, Motrin, any aspirin product). You all know the drill of prednisone tapers, etc..it just took 3 visits to get one of the doctors to tell me that it’s common for someone with asthma to be allergic to aspirin products. Diagnosis: Aspirin sensitive asthma (2/00)

Following my lap nissen surgery in 4/00, I noticed that my ability to smell and taste had vanished, but just wrote it off as a bad cold. When it hadn’t returned for several months, I started to get a little worried. So, I found an ENT. He told me that I had polyps all over the place and with my history, have Samters Triad (asthma, aspirin allergy, nasal polyps). I had my first polyp surgery at this point in 3/01. Diagnosis: Samters Triad.

In June 2001, when all of the “I don’t knows” started coming at us. I got very ill with GI problems, lost a great deal of weight, was hospitalized with a high heart rate. Ultra sounds, stress tests, EKGs, the whole nine yards were performed, but everything came back negative. Even had another endoscopy to make sure that the lap nissen didn’t come undone, which it hadn’t. Had blood tests run every day for the week I was inpatient, but nothing was discussed in this regard, so we thought nothing of it. We would learn 3 years later that I had a slight increase in eosinophilia, and elevated amalyse and lipase. This would later come into play. I was released from the hospital on a prednisone taper.

Diagnosis: Allergic reaction to medication.

I became pregnant with Zachary in September 2001. Sinuses were absolutely horrible, going through about 3 boxes of tissues a week. Other than that, my health was great and Zachary came into the world quite quickly and healthy as ever.

My sinuses never improved from that point as my nasal polyps continued to grow so I went through my 2nd polypectomy in January 2003. Looking back on everything now, it seems that I had a remission, though without diagnosis of anything, and it was all without being on any medication. 2003 was the last I remember being drug free and symptom free. 2004 was definitely the year that I would love to forget, but it was also the year when I went through so many doctors scratching their heads wondering what was going on with me, that they finally took some time to research and notice that something rare could be happening.

Having gone through an awful digestive problem in 2001 part of what started happening to me in June 2004 felt like a déjà vu. I was unable to eat, had horrible pain in my right side, felt extremely nauseas and just knew something was going on, just didn’t know what. I took a trip to the ER (we were out of town), they did tests to check for appendicitis, turned out negative, sent me home with pain medication. Long story short, I didn’t get better, in fact I got much worse. I felt like I was in labor, so I thought it might be GYN related, so saw that doctor. Negative. More tests, more pain killers but no answers. Diagnosis: Unknown.

I got to the point where weight was dropping and pain was so intense that my doctor sent me to the ER. Here they did some blood work that showed I had pancreatitis and elevated LFTs (liver function test). Admitted me and I remained for 2 weeks, only to return off and on for the next 2 months. While there, I went through too many tests to mention looking for answers that caused my pancreatitis. They removed my gall bladder, gave me TPN (artificial nutrients), tried everything. Until, one blood test showed my eosinophil count was elevated to 64%. FINALLY, my doctor decides to do a prednisone taper and I get better within hours. Diagnosis: eosinophilic gastroenteritis? Idiopathic pancreatitis? Primary sclerosing colongitis? Pancreatic divisum?

I went through my 3rd polypectomy in November 2004. If anyone has been through this, you know that prednisone is taken before and after surgery. So, for about 3 months I was symptom free. Once I was off of the steroids, my pancreatitis came back as well as high eosinophils and elevated LFT’s. What in the world is going on? I had 2 ERCPs performed and got pancreatitis both times. The second one was successful and they had to put stents in my bile ducts to open them. It was interesting that I started getting a rash at this point (April 2005). At first they biopsied the rash and it came back as an allergic reaction. Next time it comes back and it shows vasculitis. Taking me to my CSS diagnosis in November 2005. YIPPEE!

This is quite a Cliff’s Notes version. I definitely have some sort of GI involvement with my CSS. I would hope that someone that reads this has the same, or similar experience. I think that the hardest part of this disease has been the time of uncertainty and the unknown. That look on the doctor’s faces when you show up and say, “Hi, my name is Joan Miles and I have Churg-Strauss Syndrome.” And they look at you like you are speaking some foreign language to them. We can really educate them and be advocates for this. Sometimes, we know a lot more than they do.

I know for a while I was so concerned about getting a diagnosis. I wanted a name for what I was going through. My doctors would tell me a possibility of what I could have, I would come home and look it up on the internet and immediately get scared out of my mind. I kept thinking, this is it. I’m going to die and no one is going to figure out why. I definitely had my low points. But, now I’m well managed with medication and will hit my one year mark of being in ‘medical remission’ on September 2, 2006.

I feel very blessed. I feel very fortunate for all of the people I’ve met along this journey, the doctors I have met and educated, and other CSS patients. I’m currently on 5mg prednisone and 2g Cellcept and symptom free! There is hope, there is happiness and I know some day there will be a cure. But for now, it’s great to be enjoying life and knowing that I’m never alone.

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