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My name is Nancy, and I live in Eastern Canada. I have always considered myself to be a healthy, active, productive person. I loved to bike, walk, swim, drive, and craft, and took great pride in my home and keeping it clean. I am trained as a secretary, but have done many other things over the years to pay the bills - I am also licensed to drive straight truck, I have worked as a waitress, dishwasher, and taxi driver, I have done telemarketing, and I recently completed a correspondence course in computer repair.
I first became aware of fibromyalgia as it affected me in 2003, but since then, I have begun to suspect that it has been a part of my life for much longer. My battle with adhesions began in 1962, although my life was not seriously impaired by pain from adhesions until 1998.
It all started in 1962 when I underwent emergency surgery for appendicitis in a small-town hospital. There were complications – no “mitts” before surgery, no one in the recovery room to watch me after surgery. While waking up, I removed the bandage, and pulled the sutures through the surrounding flesh. I was then placed in the infants ward in a crib, with no one in constant attendance. If I needed to use the washroom, I climbed over the side of the crib, which further traumatized the site of the surgery. At that time, parents were not encouraged to visit their children regularly.
As I was growing up, I recall the doctor mentioning the possibility of adhesions from this surgery numerous times, due to the thick, crooked scar left, but nothing was done about it. I proceeded through adolescence and puberty, into young adulthood, suffering with enuresis until age 16, dysmenorrhea from age 12, and slow bowel all my life. I underwent a cystoscopy and hydrodistention of the bladder at age 12 to attempt to stop the enuresis, with no effect.
My life proceeded in what I considered to be a normal manner – severe PMS symptoms, migraines, mood swings, sleep disorders, allergies, etc. I had a normal pregnancy, with natural childbirth. My doctor at the time expressed the hope that I would have to have a Caesarean, as he intended to remove the old scar tissue in the process. Fortunately (or unfortunately considering my state of health now), my labour and delivery proceeded smoothly, and surgery at that time was not necessary.
In 1988, I was involved in a car accident while wearing a seatbelt, which caused numerous soft tissue injuries to my neck and back. In 1989, I was involved in another car accident while wearing a seatbelt, and also underwent a laparoscopic tubal ligation 9 months later. No mention was made at that time of adhesions.
In August 1998, while driving taxi for a living, I began experiencing severe lower back pain. At first I blamed it on the long hours spent behind the wheel and the lifting involved with the job. The pain progressed from being back pain when I was tired to being a constant problem aggravated by exercise of any type. The pain in the lower abdomen/pelvic region was getting so intense that I would lose the feeling in my legs. I was seeing a chiropractor at that time for upper back and neck pain resulting from the two car accidents 9 and 10 years earlier. The chiropractor could do nothing to relieve the lower back pain, so I went to my General Practitioner. She sent me to physiotherapy, which seemed to increase the pain levels.
As 1999 began, the pain was spreading from the lower back around the top of both hips to the lower abdomen and groin areas, and I was experiencing numbness down both legs. Intercourse, exercise, stretching, housework, all aggravated the pain. I started on the rounds of doctors (general practitioner, gynecologist, urologist, psychologist), testing (no abnormal results were found on any of the tests), and medications (most of which actually increased the pain and problems.
Finally, an exploratory laparoscopy to check for endometriosis found “severe, dense adhesions” connecting the pelvic tissues and organs, mostly stemming from the appendectomy scar tissue, but in all likelihood aggravated by my pregnancy and two car accidents as well as the laparoscopic tubal ligation in 1989. Once again, I began the rounds of doctors and medications. Soon after that, I was referred to a local general surgeon, who was of the opinion that "adhesions don’t cause pain", and prescribed meds to treat irritable bowel syndrome, which again increased the pain levels to where I could not function. I was then referred (at my request) to a second local general surgeon, who at first agreed with the previous one. When I questioned him on the validity of that statement based on research I had done on the Internet, he then confirmed that adhesions can cause pain, but "we don’t operate until they (adhesions) cause a complete bowel obstruction because further surgery only causes further adhesions."
My family doctor voiced the opinion that my relationship was at the bottom of my pain problem, and gave me 2400 mg of Ibuprofen daily to control the pain. I ended the relationship with no change in severity of pain, and only slight lessening of frequency. I attended Mental Health for assessment at the request of my family doctor. Mental Health stated to me that they felt I was dealing with my state of health in a perfectly proper way, and that there was nothing they could do for me.
My bowels were no longer functioning properly. and my family physician suggested that I try mineral oil and bowel retraining. It did not help. Occasional use of Exlax did not always work, nor did adjusting my fibre intake. I had gotten past the point where 2400 mg of Ibuprofen daily would control the constant pain, and any more than that upset my stomach. I was actually taking 5000 mg per day at one point in an attempt to remain working.
By May 2001, I was in a new relationship, and I was no longer able to continue working due to the increasing pain levels and being unsure of my ability to walk from day to day. My family doctor tried me on Codeine which was totally ineffective and she finally prescribed a combination medication, which did get it under control to a point. Early in 2002, I finally managed to get an appointment with a pain clinic three hours away, the closest to this area. The trip was a waste of time, as they concluded that I would benefit from psychological counselling (which I had already been for), and that I needed to discontinue the medication which was controlling my pain.
My GP then put me on a controlled release medication and I achieved some measure of control over my pelvic pain, as long as I watched what I was doing. I was no longer able to work as I needed to be able to lie down when the pain levels increased. I could no longer drive as sitting in that position aggravated the pain. Sweeping, scrubbing, vacuuming all aggravated the pain.
Since late 2001, I have dealt with recurring bouts of flu-like illnesses, nearly constant sinus problems, migraines, sleep problems, and all-over body pain. I now depend strongly on my partner to do the majority of the housework, as I cannot lift or stretch, and there are days when I cannot even stand to wash the dishes. I have started using a cane when I have to walk, as I sometimes lose the feeling in both legs and fall. I have borrowed a wheel chair for the really bad days when walking is a total impossibility. I having few side-effects from the medication prescribed to control the pelvic pain, but it does not help with the whole-body pain. I see my GP once a month for follow-up and refills. My GP has learned that I am a responsible person about my medications and not abusing them. She has referred me to a rheumatologist for assessment of the problems that I’m having that appear to be fibro, and all testing done recently has come back normal, ruling out other possible causes of the symptoms I’m dealing with. The rheumatologist felt that the all-over pain I was experiencing was caused by a lack of sleep, yet several different medications to help me sleep have been ineffective in reducing the frequency or intensity of the soft tissue pain I feel all over my body.
Some days I am extremely helpless, to the point that I need assistance to get out of bed, to get dressed, to sit down and stand up. I force myself to do as much as I possibly can in spite of the increase in pain so that I don't become a victim of chronic pain, even though I seem to be a victim of the "but you don't look sick" mentality
Over the past few years, I have been told that I have to learn to live with the pain. . .that there is nothing that can be done for me. . .that the pain is "all in your head". . .that "adhesions don't cause pain". . .that fibromyalgia is a “wastebasket diagnosis”. . .and that the professionals do not want me to get addicted to pain killers. I cannot run and play with my step-son or my grandson, because it aggravates the pain levels. At two years of age, my grandson had already learned that if he wanted to cuddle with me, he had to climb up onto my lap, because I could not lift his 28 lb. body. My stepson takes my arm to help me in and out of our vehicle so that I don't fall. I cannot carry groceries or scrub floors. My home is no longer the showplace it was even 5 years ago when I was working full-time, even though I seldom leave the house.
I have never liked taking pills, and I now find myself taking many more than I would like. As long as I am extremely careful about what I attempt to do, my pain is fairly well under control. I spend hours on end, when I am able to, crafting to make myself feel productive and useful because so many of the things that I used to enjoy are now forbidden to me unless I want to suffer the consequences in increased pain levels. I also volunteer as Resources Secretary for my adhesion support group, Bombo Beach. As a result of my research for Bombo, I have come to believe that things I have dealt with all of my life were actually signs of fibromyalgia, including the adhesions that were the original cause of my battle with pain. I am currently waiting to see what the rheumatologist and my family doctor decide to try next to manage the fibromyalgia symptoms that will not aggravate the adhesion pain. As yet, I have not had a medical professional tell me that he/she thinks I might have fibro, and I have been refused disability assistance twice, in spite of the impact that these symptoms and my illnesses have had on my lifestyle and social activities.
Life goes on.
Updating The Saga
I recently realized that it has been a long time since I originally created this site, and indeed a long time since I had written my story up to include here. It has been long enough, in fact, that I have had another surgery and recovery.
In the summer of 2005, I was planning to spend 3 weeks in Columbus, OH, with my best girlfriend, partly so that I could attend the Bombo Beach Gathering on July 29th, partly just so that I could spend the time relaxing with no responsibilities and to help my friend become acquainted with the joys of grandmotherhood. I travelled by car to the Boston, MA, area, where I spend 3 or 4 days with my buddy Jan before I flew out to Columbus to be with Anty. After a pleasant visit with Jan and a safe flight, I thoroughly enjoyed the Gathering, in spite of being doubled over with pain in the upper left corner of my pelvic area.
On Tuesday, one of Anty's daughters had surgery for pelvic pain (which turned out to be adhesions from an appendectomy)in the morning, and in the afternoon, her other daughter gave birth to her first child, a girl. I was still fighting the upper left pelvic pain, convinced that I could work through it - but that was not to be.
By Wednesday morning, I couldn't keep anything on my stomach, not even my pain meds, and I finally agreed to let Anty take me to the ER. After x-rays and a CT scan, the ER doc was going to discharge me, but Anty called her surgeon in for a consult. After examining me, he decided to admit me for emergency surgery, which took place the following day.
When he opened me up, he discovered that the upper left pelvic pain was being caused by the sigmoid colon being "tethered" in the lower right by adhesions, effectively putting a kink between the transverse colon and the descending colon. Once he freed that up, he discovered that a portion of my small intestine and large intestine were tied up in a "ball" with adhesions. Since there was a risk of perforating the intestine if he attempted to cut the adhesions down to free up all of the intestinal tract, he chose instead to do a bowel resection, removing approximately 18 inches of small bowel and 8 of large bowel. He then applied an adhesion barrier product called SepraFilm, placed a Jackson Pratt drain, and stapled the incision.
After a surgery that was scheduled to be approximately 45 minutes long turned into an hour and a half, I was taken to recovery, where my kidneys tried to shut down, and I spent the next 8 hours in recovery. When I was finally released from there, they took me to a "step down unit", where I would have a very high nurse/patient ratio and therefore be closely watched. I was in a fog the day after surgery and remember very little about the day, other than recognizing that I had tubes just about everywhere! I was "blessed" with a PICC line (because my veins wouldn't stand up to an IV line), a heart monitor, pulse/oxygen meter, catheter, NG tube, and a Jackson Pratt drain (otherwise known as a monkey ball). The PICC line provided me with medication through a patient-controlled pump. I don't recall much more of the second day post-op, but on the third day after my surgery, the nurses came in and removed the NG tube - and a few hours later, I began vomiting so forcefully that I was "going" at both ends. Of course, that happened in the middle of the night, and when I first awoke to go to the bathroom, my PICC line was wrapped around the side of the bed, and I nearly pulled it out before I got it loose - by which time I had already vomited and defecated, being unable to control it. I rang for the nurse from the bathroom, and she and the nurse's aide came in to get me cleaned up, get the room cleaned up, and get me back into bed. The story remained the same for the next 36 hours, with x-rays and testing showing no complications to cause the vomiting.
On the fifth morning after surgery, when the surgeon came in to see me, I begged him to put me back on my oral meds. I felt that I was not getting sufficient pain control from the meds through the pump, but I also felt that I might be reacting to the meds, thus causing the vomiting and diarrhea. He agreed, and a short while later the nurse brought me in my oral meds. Two days later, it was decided that I could be discharged into Anty's care,and the nurse came in to start removing the rest of the drains and tubes. When she went to remove the Jackson Pratt drain, I felt a BIG "tugging" sensation in the area of the bowel resection, but I was just glad to be going home!
Eight days after discharge, I returned to the surgeon to have the staples removed and to get the clearance to fly back to the East Coast. My abdomen was still bruised, though not nearly as bad as it had been when I was discharged. I flew back to Boston, where Jan took great pleasure in caring for me for a further 10 days before she brought me a little further up the coast to meet my partner to come the rest of the way home.
So, it has now been three years since my last surgery to remove adhesions from my pelvic organs. I do still have pelvic pain from adhesions, as I had new adhesions form after the surgery, partly from trauma from the vomiting and partly from the drain tube being adhered to the bowel anastomosis. But the pelvic pain levels are reduced enough most of the time that I don't have to reach for the break-through meds nearly as often as I did before the surgery, and I do not have the problems with bowel function that I had.
With the pelvic pain reduced, I now feel the pain from fibromyalgia more frequently and more intensely; however, since I don't need the breakthrough meds as often for the pelvic pain, I can now take them for the fibro pain with some degree of success.
I know that eventually I will have to undergo surgery to remove the adhesions again, but hopefully I can put that off for a long time yet, possibly until there is some barrier developed that will prove to be 100percent effective for all patients. But I have accepted that until that day comes, this is as good as life gets, and I have to make the most of each day as it dawns.
I have come to accept several things. Trying to do everything on my own will come back to bite me and increase my pain levels. Surgery will likely always cause more adhesions (and thereby more pain) in my body. There is no magic bullet, and the pain will always be here.
Life STILL goes on.
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