I have just had my fourth surgery in four months. First one in December for hiatal hernia repair. Two days later, for ruptured bowel. January, another for bowel obstruction. Three weeks ago, bowel obstruction. Obstructions were caused by adhesions from prior abdominal surgeries. All in all, I've had 68 surgeries, starting with ectopic pregnancy during which they removed a fallopian tube, one tumor(benign) and one cyst. Two years later, I lost three feet of intestines due to adhesions from the prior surgeries. In that instance, they kept send ing me home from ER, saying X-rays showed nothing wrong with me. I told them to call in an exorcist then, because it felt like a demon was trying to claw its way out. My husband was with me while they had put me in a room because I was disturbing the other patients. Jis ex- wife just happened to call right then and he told her what was happening. She told him to tell them to operate immediately. The daughter of a friend had died the month before from adhesions. They could be seen on x-ray. He was an attorney and gave them his card and relayed this info from his ex-wife. When I awoke, the anesthesiologist was standing by my bed. He told me that it was the most sickening surgery he'd ever witnessed. My intestines had tied in a knot and turned gangrenous. He said if they had waited 30 more minutes, I would have died. I lost three feet of intestines that time. Soon after recovery from that, I had to have an abdominal hysterectomy during which they also went through all of my intestines and cut out any adhesions present as I's been having more abdominal troubles.
Two years later, I had another two feet removed due to adhesions. In 1998, I was having severe pain. My GI at the time was testing for colon cancer. ( funny thing here is his last name was Krohn) I eventually went to ER. When I awoke, a different GI was standing by my bed. He held my hand and told me 'you don't have cancer, you have Crohn's.'.
I have also had many orthopedic surgeries, including a severd rendon on ,y left pinky. The finger would just hang. Ortho operated to repair the tendon and within a week, the tendon had adhered to the bone and stuck up in the air. This took fourmore surgeries and the last one they put a machine on my hand to keep it constantly moving and that finally worked to get my hand to work again. I learned that scar tissue is malleable and was shown how to do scar massage. This has helped immensely. Throughout that time, I was in hand therapy every morning to try to stop it from adherring. That was when I began to understand adhesions. They told me that it was the way my body healed and we needed to be aware of this in the future.
Crohn's is an auto immune disease and can attack the joints. Sort of an arthritis.
Since then I have had 3 knee replacements, my little left toe amputated, a septic infection in my shoulder, tendon replacements in hands and elbows and more.
I have broken my neck once, my back three times and my tailbone twice. After healing, I was still experiencing pain in these areas. They told me I had spondykoiodid (sp?), stenosis and more. Went to pain clinics where they did injections and at one time installed apstimulator in my spine up to my neck. That was excruciating and I had to endure it for seven days , even though I begged them to remove it.
All of this was to no avail and they told me it was 'just arthritis'.
The pain is a constant and I've come to accept that it will always be a part of my life.
About four years ago, I went to my primary and told her my saga. That had been saying it was arthritis and sending me away with no solution. She sent me to a rheumatologist. This doctor, on my first visit felt my feet, looked at my twisted hands, watched me walk across the room and told me I had Rheumatoid Arthritis. She prescribed Prednisone and Methotrexate. Ordered blood work and I was to return in two weeks to get results. At that visit, she told me that I was in Stage 3 of RA and must keep on taking the methotrexate. My hair began to fall out and my nails became paper thin. I developed painful nodular acne. I read up on methotrexate and found it is a form of chemo used to treat cancers as well as RA. On my next visit, I told her I quit taking it. My face had cleared, but the pain was the same. She put me back on the methotrexate and prescribed Leucovor to counteract the effects. This did not work. My follow up was six months later and again, I had just stopped taking it. She said I had to go back on it and prescribed Humira injections every two weeks and Hydroxoquinoline. I was to take them all. After taking the methotrexate ona Wednesday, I would have two days every week when I could not stay awake. I had a follow up soon, but I quit the methotrexate and Leucovor as the nodular acne was out of control. During this time, I had sudden pain in one of my gnarled knuckles and actually could see a new lump developing slowly. I talked to my primary and got a new referral for an RA doctor. This doctor was amazing. When I told him my saga and the name of the doctor, I noticed he and his assistant subtly roll their eyes.They did a thorough examination of my joints and ordered blood work, X-rays of hands and feet and ultrasounds of them as well. we decided I would stop the Humira injections and Hydroxyquinoline and did the blood work two weeks later, so we'd get a clearer result. My follow up was a week ago and - they see no signs at all of Rheumatoid Arthritis! They want to wait a month and re-do these tests in case there are lingering meds. There is damage to my joints, but they suspect that it is due to Crohn's Disease, with which I had been diagnosed in 1998.
The first RA doctor was fully aware of my diagnosis of Crohn's, but had me convinced that I was in Stage 3 of RA.
If you've made it this far in my long winded story, please understand, I am not whining nor 'bragging'. I've learned to cope with this to a certain degree and am not asking for sympathy. I simply want to tell my story and maybe it will be useful to someone. I can't be the only one with such an 'adventure'.
Thank you for reading and I wish all the best.