Repeated misdiagnosis almost killed me
Thinking realistically about my potential and ability to support myself, I couldn't see myself as a bank teller, cashier, secretary or other job women typically do. Numbers were not my friend! For the first two years I worked as a laborer on a high rise roofing crew as a penetration technician sealing pipes and skylights installing rubber roofs. Then I got my class B CDL and worked as a truck driver. I drove dump trucks, oil tankers, garbage trucks that pick up dumpsters, freight trucks, school and motor coach buses. When I couldn't work anymore due to rapidly deteriorating health, I started taking care of clients with disabilities in my home. There I could manage my energy better and on difficult days when I could barely function, I was home where no-one would know.
My ability to function decreased with each passing year. I had numerous colonoscopies and nineteen different doctors told me, "You have IBS. Go home and learn to live with it." That diagnosis basically means, "I haven't a clue what's wrong with you." My bowels were irritable, but not for the reasons they thought. I got so backed up in my early 30's, I couldn't eat for a week at a time, while waiting for my elimination system to catch up. I wouldn't eat until something came out. The longest I went without eating was 28 days and still, I had no bowel movement. I developed terrible hemorrhoids and a fissure in my anus (it tore). I began having the worst pain. It was like someone stuck a sword up my butt and was twisting it. It brought me to my knees. I thought, "What's happening to me?" More than a decade passed and I gradually lost a lot of weight. Nightly enemas, where I was spending two hours in the bathroom every night, took me away from my family and after a while they didn't work. How strange that the only time my intestines would move was after I rode my horse! The motion and bouncing caused my peristaltic movement to work. Then that didn't produce results after a while.
With my clients in respite care, my family and I went to an amusement park for a 3 day vacation, but it wasn’t fun for me at all. I could barely walk. The pressure in the bottom of my pelvis was so intense that it restricted the circulation to my legs and my sciatic nerves were being pinched. I pushed a folding stroller-style wheelchair, which held all the meals and beverages I would consume during the day. In an attempt to reduce the weight and pressure of my upper body on my pelvis, I rested my elbows and torso over the wheelchair when we stopped walking, and I laid-down as often as I could during our trip. It was agony, but I persevered. Every day I could feel that time was running out for me. Would I live to see my 50th birthday?
I had to wait 6 months to see a surgeon who I was told is the best at what she does and would be well worth the wait. They ran every test they could imagine on me. I didn't think I'd live long enough to make the appointment. Finally, there I was sitting in her examining room, hoping to hear how she would make my nightmare go away when I heard her say, "I feel there is more wrong with you than the tests indicate and I don't feel comfortable operating on you not knowing what that is." I went home and collapsed on the floor in a puddle of tears.
While at church one Sunday, I happened to mention my dilemma to my new friend Kelly, who has Cerebral Palsy. She suggested I go to the GYN surgeon who did her hysterectomy.
Searching for a Surgeon who will believe me
At first Dr. Skipper said, “I find nothing unusual.” I asked him to examine me standing up; not lying on my back. I reasoned in my mind that gravity contributes to the downward force of my internal organs, as well as having full intestines, so examining me standing up would recreate the natural conditions I experience during my waking hours. Dr. Skipper confirmed part of my self-diagnosis (uterine prolapse) and scheduled me for a partial hysterectomy and pelvic floor mesh implant in September 2008. You don't know how far something has fallen until it is put back where it belongs. For the first few months after surgery it felt like he gave me a major "wedgie." That only fixed one quarter of what was wrong inside me. I still had 3 other prolapses; cystocele (bladder), rectocele (rectum) and entrocele (intestines), all at the same time.
I had become incontinent. I didn’t even know I had to pee, and I was. It was so incredibly ridiculous! In my travels, I had to duck behind dumpsters or open both doors of my SUV, while parked beside another car, and hide myself from view at a moments notice, so I could avoid an accident in my clothes. Having had a hysterectomy, I traded in my maxi pads for incontinence pads. The doctor I waited six months to see gave me a referral to see a Urogynochologist. He said, "If you just cut your fluid intake in half, you won't have to urinate so much. He gave me a referral to a rectal specialist. I didn't go because I could imagine hearing him say, "Well, if you just stop eating you won't have to do anymore enemas." I knew what was wrong with me! I just couldn't operate on myself.
I found Dr. Harry Johnson. at the University of Maryland, in Baltimore in July 2009. Keep in mind what the Uro-gynocologist said. The tests that Dr. Harry Johnson’s assistant did, revealed that I had anatomical and neurological incontinence. There is a HUGE difference between cutting back on fluids and this diagnosis! That visit with Dr. Harry Johnson was such a relief. He said words I thought I would never hear, “When would you like to get that fixed?” In September 2009, I had surgery to repair my prolapsed bladder. Now keep in mind that my rectum and intestines were still laying on my bladder, but he did such a good job, that it wasn’t as much of a problem as you’d expect.
The vaginal/uterine prolapse and bladder prolapse were only half of the problem, and not the most difficult aspects of my multiple diagnosis to live with. What remained was that my intestines and rectum had fallen. Everything that suspends the internal organs; the fascia (the stringy parts that I cut away from the abdominal wall whenever I gutted a chicken I had butchered), had torn away inside me, leaving my organs unattached and totally unsupported, so that they just fell into a heap at the bottom of my pelvis.
My search for a GI surgeon, who could put my intestines and rectum back where they belonged, led me to Johns Hopkins University in Baltimore. I thought to myself, “People come from all over the world to J. H. University, because they are well known for having superior staff and the latest diagnostic tests and medical treatments. I live here, so I should avail myself of the opportunity!” Dr. G, at Johns Hopkins, ordered the usual colonoscopy, endoscope and Sitzmark study. I was supposed to do a Fleet Enema prep before the procedure, which involved taking a pill the night before and doing an enema the next morning to get my intestines completely empty. I knew that wouldn’t even come close to getting the job done and explained to Dr. G that I’d have to stop eating for 5 days prior, do enemas every night and then do the Fleet Prep. She thought I was exaggerating, but I wasn't in the least. That’s exactly what I did and still, I doubted that I was completely empty for the tests. It was all for nothing, because the tests revealed absolutely nothing, which was no surprise to me!
It is very well documented in hundreds of research studies and peer-reviewed medical journals that the quickest way to stop the symptoms of most autoimmune diseases, like IBS, Crohn’s or Colitis, and put the patient into remission, is by fasting. So it makes perfect sense to me why my colon looked relatively normal after fasting for 5 days and doing enemas. So, I begged Dr. G, “Please send me for an MRI!”
To begin with, she didn’t believe that anyone could have all four prolapses at once. She said if that were the case, than I should be falling out the bottom. I told her, “Aside from the fact that I feel like I could give birth to my insides through my butt, I have fused pelvic bones, which is common among the women in my family.” She ordered the MRI.
Dr. G stood there, with the results of my MRI in her hand, and with a straight face she said, “You need biofeedback and psychiatric help.” I said to her, “Which of those professions has the ability to put my organs back where they belong? You may make 6 figures a year, but you are fired! You are not the right doctor for me!” I couldn’t have been more disappointed! And yet, a big part of me was aware that every time one of these doctors told me something stupid like that, the reality was that God was protecting me from incompetence and keeping me safe from further harm.
I took the paper that Dr. G had in her hand, and I handed it to Dr. S, who did my partial hysterectomy and pelvic floor mesh. He took one look at my MRI results and said, “You need abdominal sacral coloplexy, and you need someone who does it A LOT!” He didn’t know who did my bladder repair and referred me to Dr. Harry Johnson at University of Maryland. He was the doctor who did my bladder repair the year before. I gave that same piece of paper (MRI results) to Dr. Johnson and he said, “You need abdominal sacral coloplexy, and I DO THAT A LOT!” I smiled inside, because I knew that God had given His stamp of approval, and with a touch of humor too.
Dr. Johnson told me he couldn’t guarantee that I would be able to have normal bowel movements after surgery. By that time, I had come to hate the sound of the word “guarantee”. I said to him, “If you do half as good a job as you did on my bladder, I will be fine.” Again, within two weeks, he had me in surgery. It was September 2010. I was still in recovery when Dr. Johnson came out to my husband in the waiting room. With a look of astonishment, he told my husband, “It’s no wonder your wife couldn’t have a bowel movement. She had a large abdominal hernia, in addition to having rectal and intestinal prolapse!”
The MRI report said, “At push, intestines and rectum descend 7 cm.” I was laying down on my back for that test, so gravity was not contributing to the downward movement of my internal organs. I had already had the hysterectomy and bladder repair. After my bladder repair, the other two prolapses were collapsed on my bladder and produced increased bladder pressure. Yet, my bladder repair was successful. I had to get all this fixed in pieces, because I couldn’t find anyone who would believe me, but also, I don’t think the MRI would have been able to detect all four prolapses at once, since there was no room inside my abdominal cavity for them to slide while on my back. Having the hysterectomy, made it possible to view the other two prolapses more clearly. The MRI didn’t show the large abdominal hernia! What doctors fail to realize is that these tests do have limitations.
The morning after surgery to repair my rectocele and entrocele, I had the most beautiful bowel movement. In fact, I took a picture of it in the toilet. I know, that sounds gross, but consider all the years I endured being unable to have a bowel movement, and all the weeks I went without eating, because nothing would come out. I often vomited after eating, because food was still in my stomach and there was nowhere for it to go. The word “constipation” doesn’t even come close to what I had been experiencing! To me, that bowel movement was art. To say, "life isn’t fair," is an understatement! For twenty-five years I used my body to care for and make the world accessible to people with disabilities and it made me disabled. I have a life time weight lifting limit of 10 pounds.
I never realized how deeply I believed" my value and usefulness has everything to do with how strong I am and how hard I can work" until that moment. As a child I had to earn my keep. I'm not strong anymore and I can't work hard. Why would my husband keep me? I sat with that discomfort for a while and then realized, I can't earn my value any more than a dollar bill can earn its value. For the first time in my life, I had permission to be a woman. I didn't have to earn love. I could ask for help because I wasn't a burden or liability. I am okay just as I am.
Scar tissue grew into my descending colon from previous surgeries. I had a tubaligation (fallopian tubes clamped) and reversal, followed by surgery to remove two of four ectopic pregnancies in my 20’s. Then 3 surgeries to repair prolapses and a hernia. I told my naturopathic physician it felt like my defending colon was being strangled. He injected something along the scars that dissolves scar tissue. The next morning I felt a tremendous difference. Multiple prolapses, a large abdominal hernia, Systemic Candidiasis and Leaky Gut were the images that appeared on 5 pieces of my health puzzle. I had 3 major abdominal surgeries in 3 years to fix 4 prolapses and a large hernia! The pain that felt like a sword was my pelvic floor going into spasm. I'm not aloud to push or use my abdominal muscles. If I do, that pain comes back and each time it lasts longer. Now it keeps me in agony for 45 minutes each time, but I've figured out if I put Cramp Bark tincture in my enema, it stops. Enemas are required 3x daily for me to have a BM. Sorry if it's TMI. Perhaps someone else is having the same struggle and needs to know these things. My lower GI function will never be restored to what it was in my childhood, but it's manageable and better than it has been the previous two decades.
You know your body better than anyone. Keep searching. Don't lose hope. Get a 20th opinion if necessary. When practitioners give you stupid answers, consider that God is keeping you from being harmed by those people.
Sharon Lynn Wythe said of me, "Johnna's life lesson is she needs to learn to use her mind to get what she wants and not her body." Consider your journey is right for your souls growth and character development. Don't just accept it! When you CHOOSE your story as the best way to grow your character and make you the person you are today, it empowers you.
When I see parents praise their little girls for how strong they are lifting their younger sibling or other children, I cringe with the idea of how that unfolds in the years to come. Our soul is put in the body as a type of classroom where we learn life lessons. We are learning how to do life in our body and in the world in a way that works best for us, or not. My father used to say, "Too soon old and too late smart." That was true for me, I hate to admit. Please learn from my mistakes and don't abuse your body. It didn't hurt, but that doesn't mean serious, permanent damage wasn't being done. I learned, just because you “can” do something, doesn’t mean you should. You can jump off a building, but you should not. You can lift a heavy weight, push your body to its limits and beyond, but should you? And for what? You only get one body in this life. If you wear it out or break it, what else is there? Life is fraught with dangers and people have accidents happen to them. Tragedy comes upon us without warning, but to inflict harm on ourselves goes against our inborn sense of self preservation, survival, and nurturing nature.