The Surgery Struggle is Real. Trust your instincts.
Last updated: March 2022
I began to experience urgency as a small child in the 1950's. I mostly hid the few accidents I had. Then through high school I smoked pot and didn't experience symptoms. When I hit college I stopped smoking pot.
My first major flare
When I was 20 I experienced my first major flare up. This was in 1974. The doctors could not figure out my symptoms. My blood count was too low to be appendix but too high to be just viral. I DO NOT run fever EVER, and did not when admitted to the hospital after severe pain and not being able to hold any food or liquid down for an entire day. In 1974 they did not have the diagnostic tools that they do now. They thought maybe I had a cyst on my ovary. An exploratory surgery was done and my appendix was removed after finding no abnormalities. In those days it was common to remove the appendix during abdominal surgery. They also didn't feed me and kept me in the hospital for a week and I guess whatever was happening cleared up on it's own, mostly.
Continued symptoms and many misdiagnoses
After that surgery I began to experience many symptoms. If I went to dinner and ate too much, I would throw up within half hour. I could only have small portions. Diarrhea became a big problem. I went to several doctors until I was diagnosed 20 years later. I went to a lot of Doctors. The first said I had acute gastritis caused by allergies. It should be noted all my allergy tests came back negative. The medication he gave me didn't do a thing and I threw it away after a month. I dealt with symptoms and periodically went to a new Dr. when symptoms got worse. Many misdiagnoses followed. One Dr suggested "it was all in my head". It should be noted I don't internalize and I am not an anxious or nervous person.
Elimination diet to manage symptoms
I began to search for a solution on my own. I kept track of everything I ate and my symptoms. I eliminated different things from my diet to see if there was a change. I found one thing that affected my symptoms. DAIRY. I eliminated dairy from my diet before lactose intolerance was a thing. I never liked milk as a child. I guess my instincts were spot on. At different points I eliminated sugar, bread, wheat, pasta, meat, nuts. If I felt good nothing bothered me (except milk), If I felt bad everything bothered me even if I ate rice all day the symptoms remained.
I worked during these years. I lived in NY, not a bathroom friendly place at the time. I learned every public bathroom that allowed use on Long Island and in NYC. I developed iron control. The best and most plentiful and cleanest were in McDonald's. It should be noted I never liked or ate their food. Coffee is good.
During these years I had several miscarriages. Ob/Gyn ran all the tests and found nothing wrong. I was blessed by a son in 1980 and boy/girl twins in 1987. Symptoms disappeared during all my pregnancies and I felt better than any other time, but still lost a few.
My doctor said I had a bacterial infection
In 1984 I went to work at 8am feeling fine. Co workers looked at me and asked if I was ok during the first hour. Puzzling. I felt fine. By noon I had lost my breakfast, felt nauseous and dizzy. I left work and a friend offered to bring son home from daycare. I passed out at a light on the way home and tapped the bumper of the car in front of me. The driver was nice, no damage. Somehow I stayed awake to get home. My husband woke me when he got home looking for my son. I told him a friend was bringing him home. The next morning he dragged me out of bed and brought me to the doctor. When walking to the exam room I passed out again. Doctor asking me questions. I told the doctor, no I didn't throw up, husband said yes I did. Doctor said I had bacterial infection and wanted to put me in hospital. I refused. He medicated me and made me take 2 weeks off from work. It cleared up. I don't remember the meds I took..
In 1996 I went to a Pow Wow labor day with a friend. Halfway through the day I began to experience the same symptoms as when I had my appendix out over 20 yrs before. The next day my doctor sent me for an ultrasound to see if I had kidney stones. No stones but tech noticed a shadow on my Gallbladder. New ultrasound revealed a gallbladder full of stones which were removed in October 1996.
My EYE doctor mentioned Crohn's disease
Easter 1997, again began to experience appendix symptoms. Doctor thought maybe scar tissue from gallbladder surgery 6 mos earlier may be causing blockage. No. Doctor did colonoscopy and took a tissue sample from the end of my ileum. Crohn's disease. 2 weeks before that my eye Doctor had mentioned it. I was telling him some symptoms that had become troublesome, and he said "I hope you don't have Crohn's disease." First time I had ever heard of it. I asked about it and he told me his son had it and gave me some info. I worked at a hospital so I began asking more questions. I knew this was going to be bad.
Acute Pancreatitis caused by Asacol
My Doctor put me on Asacol. For 3 months I was in and out of the hospital. I used up all my sick days and vacation time. I pointed out to my doctor that they didn't give me my meds in the hospital, but when I began them again when I got home I got sick. They finally figured out that I was experiencing acute pancreatitis each time I went to hospital. I had been going to a different hospital than the one I worked in. During this time he sent me to the head of gastroenterology at North Shore University Hospital and every test imaginable was done on me. I was overnight computer operator at a hospital. I showed up at work one night after returning from a couple of days off for illness. I was there for a half hour before I collapsed. I went to the ER in my hosp in severe pain. I was in so much pain couldn't walk there. I got in my car and drove around hospital to get to ER. My BP had dropped to 60 over 40 and I was admitted to CCU. After that I went on temporary disability until my issues were solved. After all the tests it was determined that I was experiencing acute pancreatitis caused by the medication I was taking. Asacol. As a result I can't take any meds classified as A-S-A's.
The Head of Gastro gave me a list of foods to avoid. I explained it's not what I eat, it's how I feel. Doctors now agree with me. Many people know what affects them individually but the foods aren't one size fits all. Blanket restrictions no longer apply.
I returned to work. I was again functioning on no medication. I was working nights and barely functioning due to chronic fatigue. My twins were 10 and I wasn't getting enough sleep during the day. In January 1998 I switched from overnight computer person to accounts receivable manager during the day, with my 17yr old son watching twins after school til I got home.
Admitted into the hospital for 24 days
In Sept 1998 I was experiencing a lot of nausea and diarrhea. When this happens I tend to switch to a liquid diet as if I had a virus. The last Wed in Sept I was ravenous for some real food. I ate lunch in the coffee shop in the hospital. Burger and fries. By the time I went home I had severe pain and the throwing up had hit me. I took off Thurs and went to the doctor. Cat scan ordered Fri morning. I called doctor an hour later looking for results. Doctor was off. I told girl on phone to please get another doctor to look at results. She tried to put me off til Monday. I told her I would be DEAD by Monday and begged her to have a doctor get the results. I was called back and told to immediately go to the hospital to be admitted.
Surgery to remove 22cm of my intestine
Three more Cat Scans were done to locate the problem. The contrast I had to drink was leaking into my abdominal cavity obscuring the problem. The head of xray finally located the abscess. I was told it was the size of my thumb. I didn't have a choice about surgery. It was surgery or death. It ended up being the size of a grapefruit by the time the surgery was done. I had 22cm of intestine removed. I was fortunate that I did not need a colostomy bag. I was put on a morphine drip the first 3 days after surgery.
I didn't remember people who visited, but saw flowers and cards and my kids told me about silly conversations that took place while I was on the drip. On the 3rd day it was taken away for use elsewhere. My temp and blood was taken every 4 hrs. That day a new girl came to draw blood. She kept putting head of bed down and I kept putting it up saying I couldn't breathe with it down. I was in the room right next to nurses station. She tried to put it down one more time and I shouted "NO!". A nurse passing by came in to see what the issue was. The phlebotomist was sent away and some kind of suction machine was brought in to clear my esophagus of mucus that was choking me. The lady in the bed next to me had a lot of machines hooked up. I had to be moved to another room because there weren't enough outlets. I also had machines hooked up. One for my legs to prevent clots, one for my IV and now I needed one for the suction machine. As I said before I DON'T RUN FEVER. No one realized I was developing an infection. Later my bloodwork showed that my white cell count was up to 30,000. My torso had been filling with fluid and it was causing pressure on my lungs. I was so swollen that I was bigger than when I was carrying my twins. It was becoming more painful and harder to breathe. I was brought to xray and a procedure was done to open and drain the fluid. I couldn't even drink the liquid I was so full. The head of xray did the procedure and was requesting more and more containers to collect the fluid. I was put in another room with a drain to collect more fluid. I was supposed to go home that Monday, but ended up staying 2 more weeks. A temperature finally arrived and spiked at 100.5. I was put on high volume steroids. I tried to refuse but doctor said I would die without them. I had always been slender(not skinny), It was explained to me that I wasn't absorbing my nutrients and had malnutrition. I was finally sent home 24 days after being admitted. The distension in my belly from the infection caused an incisional hernia which had to be repaired a year later. I didn't return to work until the last week in December.
My son totaled my car on the way to hospital to pick me up on discharge day. Equal fault, there were no signs indicating right of way at intersection. My little Taurus was hit by big pickup truck. A coworker of mine brought me home.
Small bowel resection was my scariest surgery
There have been many surgeries since, but, I would rather not scare people with my experiences. This small bowel resection was the scariest and most life threatening of them. I had another 6 years later, a week in hospital, no infection. Easy. There are many side diseases/issues that present more frequently in people with Crohn's. I've found over the years that no 2 experiences are the same. There are a wide range of symptoms that many do not have. It should be noted that I worked at the Hospital for 8 years at 2 different jobs, as a computer operator and accounts receivable manager. Everyone knew me and I received excellent care. I have had symptoms for 48 years, but it took over 20 to be properly diagnosed. Many of the things the doctors told me at first were incorrect because this was a fairly unknown disease at the time. The doctors say I'm Atypical because I don't run fever(only ran during first resection) and never catch contagious diseases, even though I've been advised that the medication I am now taking makes me more susceptible. It took a lot of trial and error to find a medication that didn't make me sicker. Many medications did nothing at all.
Trust your instincts.
You know your own body better than anyone else. Get a second opinion, or a third, etc. Don't let people accuse you of being a hypochondriac, or lazy or any myriad of negative things because you are struggling. Be proud of your accomplishments.
As a side note. I moved to FL in 2005. After switching gastroenterologists a few times, I finally settled on an excellent doctor. His name seemed familiar. I've seen so many doctors over the years it took me a while to place him. He is the son of the gastroenterologist who did all the tests at North Shore University Hospital the year I was finally diagnosed properly.
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