Posted 10/13/2013 7:51 PM (GMT -7)
I wanted to share my story in hopes that maybe someone has gone through the same kind of stuff I have. So far, my case has been so complicated that I have been ''passed'' around from doctors to doctors as they cannot figure out my case and what the issue really is...
It all started in April 2011 when I started having bad cramping in the lower right quadrant of my abdomen. One night, it was excruciating to the point that I could not get up from my knees. As over-counter medicine wasn't doing anything, I found no other option but drag myself to the emergency room. Once there, they ran a bunch of tests and discovered I had accute appendicitis and performed emergency surgery on the spot. The doctors said my appendix was very inflammed and also very small. They removed it, and I thought that would be the end of the problems.
Since then, it has been nothing but hell. I have had pain in the same area on an almost daily basis. I have passed a numerous amount of CT scans, MRI's, blood tests, colonoscopies, and I am sure I forget some. Shortly after my appendectomy, I suffered from a rectal fistula, which I had to have surgery for. the doctor who performed the surgery also did a colonoscopy and CT scan and found no evidence of Crohn's disease.
The problems kept coming and I still had excruciating pain in the lower right quadrant. I found another doctor,
and they came to the conclusion that I suffered from Cronh's. I was in denial of the diagnosis for most of the two years (and still kind of am) because the only symptom I had was pain in the lower right quadrant. He put me on some medication (cant really remember which one, but might have been Pentasa), and that didn't help. Pain persisted and it was starting to ruin my life.
So I found another doctor that I was referred to by someone sometime in 2012, and he confirmed the Crohn's and prescribed me Mercaptopurine. That medication did not help me either. In fact, it nearly killed me. The doctor who prescribed me the med, failed to check my blood levels while I was on medication, and failed to tell me I should be checking it. As a result, a few months later, I found myself with a severe headache and neck pain, and went to see my primary physician. He ran a simple blood test (CBC) and rushed me to the ER, where I was diagnosed with Pancytopenia. My white and red blood cells, hemoglobin and platelets were all so dangerously low that nurses had to double check my file matched the person in the room, as they expected to meet a half-dead person. I was even told by one of the nurses that she had seen someone with same levels die shortly after. I needed 6 blood transfusions and was hospitalized for a week. Needless to say, I stopped that medication and also stopped seeing that doctor. He retired a few weeks later.
Following this, I went to my primary physician, crying and desperate for help. As I am not from the US, I didn't have a clue about what doctor to go see, and the last ''referral'' I got from someone ended up a disaster. My doctor referred me to another GI, who I saw for almost a year. He too confirmed the Crohn's disease and tried putting me on Apriso. That did not work and even gave me cramping. He then suggested I started Remicaid as my body had failed any other medication. I hesitated at first, as I was still in denial in regards to my diagnosis, and wasn't ready to make such a big commitment, kinda scared of the side effects. A few months later, in April 2013, I was again hospitalized due to a golf-ball size abcess that was growing in my abdomen (lower right quadrant again-illeum). They performed surgery to remove it, and discovered I had a fistula from my intestin to the outside of my skin. They also wanted to remove the illeum as it had been causing me so much pain, but during the surgery noticed how swollen it was, and felt it was too risky to do so. As I recovered from the surgery, doctors started suggesting that I started taking Remicaid. As I was feeling worse and worse, and sinking into depression, I took the plunge and started Remicaid. I have been on Remicaid since, and I don't feel like it has done much for me.
Since my surgery in April, I still have an open wound that drains stool from the fistula. The wound is not closing and neither is the fistula. I have had a colosomy bag for a few weeks, but went down to gauze shortly after that as the amount decreased. It's still very uncomfortable and a pain in the neck.
To this day, nothing has helped me with the pain so far. The only symptom I really have, and have had for the past two years, is pain in the lower right quadrant (around my illeum) and extreme fatigue. The doctors advised my intestins seem to absord about 30% of my nutrients, so I have also gone from being 145lbs to 115lbs.
I feel extremely tired all the time, and in pain, but I have never had any other symptoms such as diarrhea, bloody stool, fever, cramping, etc.
My doctors keep suggesting the surgery, but I am afraid that my illeum is still too swollen to reconnect, and the last thing I want to do is have to carry a bag of poop with me, especially because of the nature of my profession (I work in a law enforcement agency). My relationship with my live-in boyfriend has also suffered from all this, as he is also a very active person, and I am obviously not anymore. It has come to the point where when we go out to do something, whether it's golf, going out for a movie, drinks or dinner, beach or boating, I have to take pain medication in order to enjoy what we are doing. Otherwise, it's completely miserable for me, and probably for him too.
This has been a very depressing journey for me. I was an athlete all my life, played college sport, have been a very active person, and all of a sudden I am this boring person who has a hard time walking half a mile and can barely walk her dog due to the pain. I am always tired, and never want to go out with friends, because I am always in pain. Whenever my illeum starts hurting, it also hurts all the way in my lower right back, where I also have herniated discs. I always felt like maybe these two pains were related as they always come together and leave together. The doctors tell me it does not matter what I eat, that everything will hurt when going through the illeum.
The doctors don't know what to do with me. My last doctor who put me on Remicaid pretty much told me he was referring me to another GI doctor because my case was too complicated and he was out of solutions for me. I see my current GI doctor again in November but I feel like there is no other solution but surgery. I am dreading it, but maybe it will be for the best.
I apologize for the long post, but this has been the story of my life these past 2-3 years. If anyone has experienced the same, I would love to hear from you and what has helped you.