This is my personal journey with Sphincter of Oddi Dysfunction and chronic pain.
“That is it!” I yelled across the room, “I am done. No more.” I was snarling and ready to bite off your head if you argued with me one bit. “I have had enough,” I screamed. I was in full blown breakdown mode. Being sick had taken its full toll on me, and I felt like something, anything needed to change. It was one of many upsets, and the sad part was, not much would change. Except for how I interpreted and viewed my situation.
My name is Faith. I have S.O.D or Sphincter of Oddi Dysfunction. Yes, I know. When I first heard it I thought it was some evil mythological creature too. Unfortunately, it is not. It is a disorder. A disorder that I have. The best way I can explain it is that my sphincter muscle by my pancreas located in the common bile duct spasms involuntary. It causes an immense amount of pressure and is known to be exceptionally painful. So, in summary, my doctors went in for an E.R.C.P (Endoscopic Retrograde Cholangiopancreatography) measured the pressure in the duct to confirm my sphincter dysfunction and then sliced the muscle to stop it from spasming. Unfortunately, this procedure is not always so successful, and as an ill side effect of the disorder and procedure, you can get pancreatitis. I also suffer from chronic pain syndrome as a result of my Sphincter of Oddi Dysfunction.
I had two E.R.C.Ps the first they cut my sphincter muscle, and I got a case of pancreatitis. I recall being rolled out of the operating room on the gurney, barely awake asking, “did they find it?” to which a nurse confirmed my disorder. I sobbed at the point in time. I just sobbed and sobbed. They were tears of happiness. I was happy to be sick. I know it sounds different. However, I had spent a year prior not being believed by doctors. They would deny me access to care I needed based on a psychological history with depression. “You are having anxiety!” I would hear or better yet, “That is just a panic attack,” when in fact my symptoms did not even make the grade for a panic attack or anything of the sort.
Unfortunately, this was not the end of my dealing with horrible doctors and hospitalization. That is also not to say I do not love my current team of doctors; they are quite honestly amazing. I truly appreciate what each of them has done for me.
After that bout of pancreatitis from the 2nd E.R.C.P., I began to get recurring episodes of pancreatitis. I found myself in the Emergency Room and Hospital just as much as before. Except for this time, it was worse, the levels of pain were excruciating. If you’ve ever had appendicitis, you know what I’m talking about regarding pain. Now, multiply that as if it were occurring every other day. That is the kind of discomfort I have to deal with daily.
That was until they decided to do something radical. Suddenly, I was expected to stop eating and to subject myself to a feeding tube procedure to help quiet the activity from my pancreas. It was explained to me like this, “if we can feed you through a tube that reaches your jejunum bypassing your stomach, we can help your pancreas in such a way where it is not working very hard or at all because there are no enzymes from the stomach producing signals to your pancreas to work. After your pancreas gets a break, you will be able to eat again normally.” Desperate, out of luck and just plain old disgusted with everything that had happened, I opted to have this tube placed. At first, they wanted to make sure it would get me out of pain & off my pain medications. For eight full weeks, I was on an NGTube or Nasogastric Tube, that’s right, they shoved a feeding tube up my nose & it reached right down my throat, through my stomach to my small bowel. I could not remove this tube & had to keep it in 24/7 for eight weeks. I had to sleep in an upright position at all times and boy was that difficult. I slept haphazardly on the couch while this thing pumped liquid food through the tube up my nose to my intestines.
They had promised me that the tube would be removed in 4 weeks, but as time went on and week five and six quickly approached, I became more and more anxious. I would be starting what would be my last term in school and like heck I wanted to go to class with a feeding tube up my nose. So, since the “treatment” was working, I decided to have it removed from my nose to get an abdominal J-tube placed. I went to a surgeon, and he cut a hole through my abdominal wall into my intestines to put in a tube that was held to my skin by some black stitching.
The whole thing looked pretty archaic to me. I was completely devastated to have this thing sticking out of me, but at least I was able to hide it under baggy clothes and go to class without some monstrosity hanging from my face and nose. Getting to class was simple, I’d just disconnect from my pump, tape the tube to my skin and put a baggy shirt on to hide it. Eventually, I got a special belt to tuck the tube away and that gave me so much more freedom.
At first it was awesome. I managed to get through school and graduate, finally. Things were looking up too, until, the whole thing got infected. So, I made the decision to remove it. My skin culture tested posted for seven intestinal bacterias. It was red, inflamed, and smelled so gross. The doctors made the decision to remove my feeding tube, and I attempted to eat again.
However, that didn’t last long. Eating made me incredibly ill, and thus a new tube was placed two months later with a different doctor and technique. This feeding tube was much better than the one I had prior, but it still left me with a disconcerting feeling of hunger and emptiness.
I remained tube fed for three full years. It wasn’t until recently that the tubing came out and I could enjoy the taste of food again. However, my relationship with food has remained strained. I cannot tolerate rough vegetables, red meat, or fats. This is my special Sphincter of Oddi Dysfunction diet regime.
Being chronically ill with chronic pain is overwhelming, and despite getting better it still affects my life in so many ways, it’s hard to know where to start. You can always begin with the facts or go through a specific timeline of how things occurred. Doing this feels as though I’m leaving a huge part of my story out. It means I am leaving out how I feel about what has happened to me. It’s a simple question:
“How does chronic pain & your illness make you feel?”
The answer that comes to mind is that I do not know how that makes me feel. I know what it’s like, but I don’t know how to feel about being ill because I don’t remember anymore what it is like to not be sick. The last five years have been incredibly painful, traumatic, and quite strange. Over these years my thoughts, values, and identity have all drastically changed. I am not the same anymore.
What most people don’t realize is that not being the same, is not necessarily a bad thing. I have learned to appreciate the little stuff. Keeping a gratitude journal is one way I’ve been successful at maintaining happiness. Another thing that keeps me sane is staying engaged with friends. Just because, I can’t go out that day doesn’t mean I cannot ping you on Facebook or text you.
Finally, knowing I am not my illness is helpful too. I am many things other than my illness. I am a daughter, sister, cousin, niece and granddaughter. I am a friend. I am social. I love my dog. I am a nail art fanatic. I enjoy doodling and adult coloring books. I have a soft spot for modern music. I am an alumnus of an excellent school. I am extroverted & so much more. At the end of the day, I believe, as cliche as it sounds, what doesn’t kill you only makes you stronger & having Sphincter of Oddi Dysfunction has made me much stronger despite the E.R.C.P’s and feeding tube.
TWEETABLESWhat doesn't kill you only makes you stronger is cliche but true. #Strength Click To Tweet Being chronically ill isn't necessarily a bad thing. #ChronicIllness Click To Tweet Faith is my middle name. #ForReal #Love #Hope #Faith Click To Tweet
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