To be honest, I'd been worried about stomach pain since November 2019 and my doctor thought it might be IBS (Irritable Bowel Syndrome) but, at the time, it was not as important as getting the herniated disc in my neck fixed. The pain didn't happen all the time, or even after eating the same foods, so I wasn't too concerned about it myself.
Then around February I started tracking when I had stomach pain in my bullet journal. I combined this with stepping up food tracking in my Weight Watchers app - to see if I could determine causation. I was also experiencing severe back pain and trouble sleeping, which I thought was unrelated to the stomach pain. K and I even went so far as to buy a new mattress to help improve our mutual back problems - his improved and mine did not. I was thinking I might have another disc problem but in my lumbar this time.
In March and April, I started to see a correlation between bowel movements and stomach pain. This wasn't really a surprise to me, I've been concerned about not having enough fiber in my diet ever since my gall bladder was removed ten years ago. So I started stepping up the fiber routine to help with the constipation pain I thought I was having. Towards the end of April, the stomach/back pain got much worse and I realized they must be related somehow - maybe kidney stones or some kind of infection. So I scheduled an appointment with my Primary Care Doctor.
But before I could get to my first virtual appointment to address the issue, I had the worst pain I'd experienced since my gall bladder went bust. It actually felt a lot like that pain, except it was lower in my stomach and radiating out to my back. I could even time it, like with my gall bladder, and know that within a half an hour of eating I would get an attack of pain.
After one sleepless Friday night, I went to Urgent Care. They diagnosed me with GERD (Gastroesophageal Reflux Disease) and sent me home with pills to control the acid in my stomach. I knew it couldn't be GERD, but thought maybe I had an ulcer or something that could be relieved with the stomach acid pills. They didn't help at all and I spent the next two nights in pain until I finally realized if I stopped eating by 8:30pm I could at least lay down at bedtime.
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| PICC Line |
My doctor sent me for a CT scan and I was willing to pay the out of pocket cost to be seen on Wednesday instead of waiting a week for insurance to approve it. I have never been so glad I made that decision. It turns out, I had two abscesses in my intestine and a fistula had formed between them. My doctor sent me to the ER and I spent the next week waiting to see what the official diagnosis would be.
The doctors at the hospital put me on an antibiotic and a no food/no drink diet. I had a PICC line inserted into my right arm - for those that don't know, because I certainly didn't before this happened, it's a tube that is inserted into a vein in your arm (or leg, or neck) that goes all the way to an area near your heart. So it's important to keep it clean and make sure there aren't any bubbles in the tubing. There is a fork in the tubing that allows for two points of entry - one was dedicated to TPN (Total Parenteral Nutrition) and the other was used to draw blood or inject medicines. The hospital used this to feed me - using TPN which looked like a weird milkshake in a bag.
TPN is a mixture of sugar (dextrose) for energy and protein (amino acids). Sometimes they add Fats (lipids), Electrolytes (such as potassium, sodium, calcium, magnesium, chloride, and phosphate are also included), and other vitamins/minerals as needed. It contains everything a human being needs to survive. The nursing staff tested my blood regularly to make sure I was getting everything I needed for normal bodily functions and adjusted the mixture from day to day to meet those nutritional goals. The bag would be delivered every day at 8pm and would run for 24 hours.
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| TPN Bag |
What the TPN did was to allow my bowel to completely rest by not digesting any food at all which, in turn, allowed the abscess to begin to heal. The first day was pretty miserable because my brain was still sending hunger signals to my stomach, but after a while everything righted itself and I didn't have the feeling of being hungry all the time. In combination with the hospital no visitor policy, it made me realize was how much of an event eating food really is. It's not just about nourishing your body - it's a social event and an activity to stave off boredom all rolled into one.
The whole week was spent mostly alone, except for the doctors and nurses who would stop in, and running all kinds of tests to rule out what was causing the abscess. My partner, father, and step-father, were all able to drive by and wave to me through the window - K even brought our puppy for a walk where I could see her for Mother's day - but it isn't nearly the same as being able to be in the same room with the people you love. I know that it was equally as difficult for my family to not be able to visit me and they felt helpless while I was going through all of this.
The Gastrointestinal(GI) Team at the hospital ruled out a troubled appendix very early and mentioned it could be a form of IBD (Inflammatory Bowel Disease) but needed more tests to determine for sure. I suggested, in vain, that my father had diverticulitis and maybe this was something related. What I wanted was something that could be treated, healed, and then forgotten - like I'd done with my Gall Bladder, Tonsils, and already the replaced disc in my neck. What I didn't want was something I'd have to worry about the rest of my life - like diabetes, cancer, or some other disease.
The final procedure to determine my final diagnosis was a Colonoscopy. For those that have the tremendous fortune to never have been through this process, please count yourselves the luckiest SOBs on the planet. It's less about the procedure and more about the preparation for it. I had to drink a gallon of what I can only describe as stagnant seawater that had been filtered through a jock strap and infused with celery. I'm pretty sure it was straight out of the tank where they kept the Sea Monster in The Shape of Water. Thankfully, I'd already been on TPN for 6 days and there wasn't a lot to cleanse out of my system.
The Colonoscopy - about eleven years earlier than I had anticipated having one - wasn't as bad as I thought it would be. There were, however, complications that have now made me impervious to public embarrassment. My period had started a few days earlier, because of course it did, and I had to use the large medical sanitary pads the hospital had stocked. So I had to keep my underwear on and then shimmy them down to my ankles right before the procedure in a room. And, of course, the Colonoscopy team that day was all male.
Otherwise, it wasn't unlike the outpatient procedures I had for my tonsils, gall bladder, or ACDF surgery. They wheeled me back, told me they would put me under and to count backwards from 100. Then the next thing I remember is being wheeled back out to the recovery room to fully wake up. The nurses in the recovery room were very attentive and kind. They offered me a ton of literature on IBD - specifically Crohn's Disease - and a low-residue diet. So this was the first confirmation that I was going to be diagnosed with Crohn's and it felt like being blindsided even though the GI team had mentioned it as one of the items they wanted to test for.
The doctors has taken a piece of tissue during the Colonoscopy to biopsy - because that was the only way to definitively diagnose Crohn's Disease. I held onto that for the rest of my hospital stay - hoping and praying that the biopsy would show something else and we'd have to cross Crohn's off the list. Unfortunately, I didn't get the official diagnosis until two weeks later when I went for my follow-up exam at the GI's office. Even then, I insisted on a second opinion to be sure.
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