There are days, and then there are DAYS; memorable days; unforgettable days. Yesterday, and into the early morning hours of today, was one of those unforgettable days. I have had a lot of bad, really bad, awful days over the past three years. Thanks to gastroparesis, fibromyalgia, and degenerative spine disease, every day is challenging. Most days are normal, but there are other days that stand above what has come to be my “new normal.”
About 7:00 pm last night, my battle with nausea kicked into overdrive. My goal is to avoid vomiting. I took some Zofran, hoping it would ratchet the nausea down to normal levels. An hour later, I realized that the medicine was not going to work (it usually works quickly). I finally felt that awful feeling, the call to bow before and worship the porcelain God. I slowly rose from my recliner, picked up my cane, put my right hand over my mouth, and made my way to the bathroom. I quickly knelt before the toilet and up came the contents of my stomach. I repeatedly vomited for what seemed like eternity. Once I determined that I was “safe,” I got up off the floor, washed my face and beard — which was covered with chunks of vomit — and returned to the living room. I still felt nauseous, so I took more Zofran, hoping that I wouldn’t have to throw up again. The medicine quickly kicked in. All praise be to Loki and modern medicine.
Surely, this is enough for one day, right? Right? I mean, right?
Polly came home from work at 2:30 am. She asked me if I wanted anything to eat. I told her nnnnnooooo! We watched a bit of TV and then headed for bed. The time was 3:45 am. Polly did her usual bathroom routine while I arranged my side of the bed in preparation for yet another titanic struggle with pain. I took my nightly medications, including Vicodin, Zanaflex, and Trazodone — all meant to reduce my pain so I could sleep. At 4:15 am, I told Polly “good night” and told her “I love you.” As is her custom, Polly gently patted my side and told me “I love you too. I hope you have a good night.” In a matter of minutes, Polly drifted off to sleep. I started watching a new series on Netflix, hoping to join Polly in dreamland one to three hours later.
Surprisingly, I fell quickly asleep, only to wake up an hour later. What could happen in an hour, right? Due to the excruciating pain in my back and neck, I typically sleep on my right side or on my stomach. This night, I started out on my side. Sometime during the hour I was asleep, my right leg fell off the bed (a common occurrence). When I woke up (the first time), I was alarmed to find that my leg and right arm were totally paralyzed (not numb, paralyzed — a first). It took me about ten minutes to get my leg back on the bed. I suspect the nerve (s) controlling my leg and arm had gotten pinched. Once I was properly situated on the bed, the paralysis eventually went away.
Surely, this is enough for one day, right? Right? I mean, right?
As I wrangled my body on the bed something didn’t feel right. Why do my back and legs feel wet? I stood up by the bed and surveyed the blanket and sheets. Water, maybe? Nope. Shit. Lots of shit. I had lost control of my bowels. Worse, in trying to get my body settled, I had rolled in the shit. The “wet” on my back and legs was shit. Think: vanilla ice cream cone rolled in chocolate. I said to myself, “are you fucking kidding me?”
Surely, this is enough for one day, right? Right? I mean, right?
As I made my way to the bathroom to get a wet washcloth and towel, I noticed I was really weak and lightheaded. Halfway to the bathroom, I passed out for a second, sending me careening into a white folding table in the living room. Fortunately, this broke my fall.
Surely, this is enough for one day, right? Right? I mean, right?
Nope. You see, when I used the table to break my fall, my glasses were on the top of the table, Of all the things I could have hit, I put my full weight on my glasses, bending them to such a degree that I can’t wear them.
I finally made it to the bathroom, got the towels I needed, and returned to the bedroom to clean up my mess. Amazingly, Polly slept through all of this. I didn’t feel I needed to wake her up, though I could have used some emotional support. “My shit, my problem,” I told myself.
After cleaning the bed, I sat on the side of the bed for 30 minutes or so, head in hands, wondering if I could go on. I finally decided I could, and snuggled back in bed next to Polly.
Surely, this is enough for one day, right? Right? I mean, right?
Finally, I can say yes.
Bruce Gerencser, 66, lives in rural Northwest Ohio with his wife of 45 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Two years ago, I had my diseased, inflamed gallbladder removed. I had put off surgery for years, but my primary care doctor insisted I have it removed, fearing it could rupture at any moment. After my gallbladder was removed, the surgeon told me that my gallbladder was so large that he had to enlarge the incision to get it out. Not long after, I started having serious stomach and bowel problems. After spending several days in the hospital — a nightmare experience — Dr. Matt Cooley, a local gastroenterologist, determined I had gastroparesis. I had several endoscopies and colonoscopies to make sure that some other problem was causing my symptoms. These tests confirmed Dr. Cooley’s diagnosis.
Since then, I have lost 110 pounds, dropping ten inches in my waist and three shirt sizes. My weight loss has leveled off thanks to me (and my drill sergeant wife) forcing myself to eat. I rarely have to drink Ensure these days. I am nauseous every day, without exception. I wake up with nausea and endure it throughout the day and evening hours. As you might imagine, it is hard to eat when you are nauseous. At times, I have bouts of vomiting. Thanks to taking Zofran, a drug that is often given to chemotherapy patients, I have been able to largely control the vomiting. Yet, there are days when Zofran doesn’t work and I end up vomiting. I retch when I vomit. This causes all sorts of other problems thanks to the herniated discs in my back and neck. Not a fun experience.
Since being diagnosed with gastroparesis, I have had to deal with several physiological changes. I am now anemic. Two years of B-12, iron, and vitamin C supplementation have helped, but blood tests show I am still anemic. The biggest change was to my vision. I got my first pair of glasses fifty years ago. I was decidedly nearsighted, with dramatically different vision in each eye. Over the past eighteen months, I have been dealing with blurred vision and aching eyes. I first saw my optometrist. After numerous eye exams, it became clear to me that she was incompetent. I then saw an ophthalmologist. He quickly determined that my body was having a hard time adjusting my glucose levels due to me being diabetic. This was affecting my vision. This doctor determined that I am now farsighted. I have, for the most part, stopped wearing glasses. I have an appointment with a new ophthalmologist later this month. I am hoping my eyes have settled down enough that I can get a stable prescription for glasses.
Outside of the non-stop nausea, the biggest problems I have are bowel related. I take fiber supplements and oral fiber medications twice a day, yet I have bouts of horrific constipation. My general rule is that if I haven’t had a bowel movement in 48 hours, I give myself an enema to get things moving. I will also have bouts of loose stools, including diarrhea. There’s no rhyme or reason for my bowel problems. I closely monitor what foods I eat and how they affect my bowels, but I have yet to find any food or foods that make a difference. Typically, my bowels are sluggish, with food often taking 3-7 days to traverse my intestinal tract. I track the speed of elimination by eating certain foods that I know will show up in my stools.
One positive effect of having gastroparesis and losing 110 pounds is that my blood glucose levels have dropped thirty percent to around 5.5. A side effect of this is that I have an increasing problem with low blood sugar levels. I have had several instances where my levels dropped to fifty, near diabetic coma range.
On occasion, I am asked what “caused” my gastroparesis. Did having my gallbladder removed play a part? My gastroenterologist believes that my gastroparesis is diabetes related. Determining the “cause” doesn’t matter that much to me. The treatment is the same, regardless of the cause.
I had a procedure done early on where the doctor using an endoscope (under anesthesia) injected the muscle at the bottom of the stomach with botulism, hoping that this would paralyze and relax the muscle. The procedure did not work. There are other procedures that are experimental in nature that can be tried, but after reading the literature on these procedures and their risks/complications, I decided against having them. I have reached the “live with it” phase of my battle with gastroparesis. I know there might come a time that I might have to have a feeding tube put in (if I choose to do so), but so far I have been able to manage my symptoms with medications, diet, and cognitive behavior therapy. There’s no cure for gastroparesis, so the only thing I can do is figure out how to live with the disease.
Recently, a friend of mine asked me for tips on how to deal with gastroparesis. His wife was recently diagnosed with the disease. What follows are my suggestions. This should not be construed as medical advice, though, quite frankly I know more about the disease than some of the doctors I have interacted with since my diagnosis. Gastroparesis is a rare disease. Many doctors are not educated on the disease, which I can easily spot when I have a consult with them. Nothing worse than a medical professional trying to bluff their way through an appointment.
Gastroparesis, also called delayed gastric emptying, is a disorder that slows or stops the movement of food from your stomach to your small intestine. Normally, after you swallow food, the muscles in the wall of your stomach grind the food into smaller pieces and push them into your small intestine to continue digestion. When you have gastroparesis, your stomach muscles work poorly or not at all, and your stomach takes too long to empty its contents. Gastroparesis can delay digestion, which can lead to various symptoms and complications.
How common is gastroparesis? According to NIH, gastroparesis is not common. Out of 100,000 people, about 10 men and about 40 women have gastroparesis.
It is essential to have competent medical care. Don’t be afraid to seek out a new doctor, one that has a working knowledge of gastroparesis. Doctors cannot be all things to all people, and their knowledge in one area doesn’t mean they are knowledgeable in another. At a bare minimum, you need to have a gastroenterologist on your medical team. Over time, you might find that your primary care doctor can handle your ongoing care and prescription refills. Don’t be afraid to change doctors, if necessary. Your care comes first.
There are various medications that are used in the treatment of gastroparesis. I tried several medications before landing on a regimen that works for me. Your mileage may vary. Untreated nausea will wreck your life, so don’t be afraid to ask for drugs such as Zofran, Phenergan, or Reglan. I have taken all three. Zofran works the best for me. You will likely have to use these drugs for the rest of your life.
Food. Before being diagnosed with gastroparesis, I rarely thought about the food I ate. Having gastroparesis forces me to think about food all the time. How will eating ________ affect me? I am nauseous every waking hour, so my goal is to make sure that I am getting sufficient nutrition. On days when I simply cannot bear to eat, I try to drink two Ensure drinks per day. This is not a long-term answer. Two shakes = 700 calories. This will help short-term, but the typical person needs about 1,200-1,600 calories per day. You might need to take supplements, but don’t do so without having your blood levels checked. Taking too much of a vitamin or mineral can cause you problems. Have your doctor do baseline tests to determine your blood levels. Once you have these numbers in hand, your doctor can then prescribe the proper supplements. I take B-12, iron, vitamin C (to increase Iron absorption), and potassium. I have my blood levels checked several times a year to make sure the supplements are doing their job.
Only eat what you can. You might have to push yourself on some days to eat, but don’t feel guilty if you can’t eat all of the scrumptious meal your spouse made especially for you. There are days when I can only eat 25-50 percent of the food Polly puts on my plate. There are days when I will take one or two bites and I am done. I encourage Polly not to take this personally. This is truly one of those “honey, it is me, not you.” I used to feel guilty over this, but my counselor has helped me to understand that this is not my fault. It still upsets me when we go out to a nice restaurant on a date, only for me to leave most of the food on my plate. Ugh, but there’s nothing I can do about it. The psychological price of not going out with Polly is much higher than the cost of food not eaten. Change what you can, and live with the rest. It’s not your fault.
Do whatever you need to do to maintain regular bowel habits. This, by far, is the most frustrating and challenging problem for me. If you are having problems with constipation, take fiber supplements. Don’t be afraid to up the dose until you have a normal “shit.” You might have to take fiber supplements for the rest of your life. I use psyllium husk powder twice a day. I hate drinking this stuff. Sometimes I gag, but I know if I don’t drink it, I will be constipated for sure. I also take a stool softener and laxative twice a day. All these things taken together give me tolerable bowel movements — most of the time. And when they don’t cause a bowel movement, I use enemas, either pre-filled Fleet bottles or a bulb syringe. During times of diarrhea, I stop taking fiber supplementation. Over time, you will learn how you read your body. You will become an expert in “shitting.”
Having gastroparesis will wear on you psychologically. It’s a disease you can’t get away from. It’s an ever-present reality in your life. It is not uncommon for gastroparesis sufferers to battle depression. It’s important that you seek out a competent secular counselor who has experience in helping people with serious health problems. I see a psychologist weekly. She is literally a lifesaver. Her first question every week is “how are you feeling?” She doesn’t let me get by with saying “I’m fine,” “super-dooper,” or “present and accounted for” — my typical responses. She presses me for all the gory details of my past week.
While there are gastroparesis groups on the Internet you might find helpful, be careful. As with all such groups, you will find a lot of woo and bad advice. I found this to be true with both gastroparesis and fibromyalgia groups. People mean well, but consider the source. Educate yourself about gastroparesis. Check out well-regarded medical sites. Read the scientific studies. Your goal is to know everything your doctor knows, and then some. Ask questions. Talk to fellow sufferers. None of this will “cure” you, but knowledge is power.
If I can ever be of help, please let me know. I am not a doctor, but I do know “stuff.” And as someone who has an intimate relationship with gastroparesis, I understand what you are going through. I want to help you in any way I can.
Bruce Gerencser, 66, lives in rural Northwest Ohio with his wife of 45 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Warning! This post talks about bodily functions, especially vomiting and shitting.
Two years ago, I was diagnosed with an incurable, debilitating stomach disease called gastroparesis. As a result, I have lost 110 pounds. Constant nausea, lack of appetite, fits of vomiting, erratic glucose levels (mine dropped by 30 percent, changing my vision from nearsighted to farsighted), and chronic bowel problems are a few of the common symptoms. (Many gastroparesis sufferers end up on feeding tubes.) Bowel movements are often life’s greatest adventures. Will today be the day I shit? Gawd, that was the mother of all turds. Diarrhea? Really? I was constipated yesterday. Bowel movements every day for a week, and then no bowel movements for days. Gastroparesis, also called stomach paralysis, slows the movement of food from your stomach through your intestinal tract. Sometimes, food takes 4-7 days to make it through my system. My problems are further complicated by the fact that I also had my gall bladder removed several years ago.
I am nauseated all the time. There’s not a day when I am not nauseated. The nausea is such that there are days when I don’t want to eat. Polly is a superb cook. She will whip up awesome meals, only to have me say “I can’t eat” or after eating a bite or two I say, “I’m done. I can’t eat anymore of this.” Typically, I apologize to Polly for my lack of appetite, for making her “feel” like she’s to blame for my lack of appetite. I remind her, “it’s me, not you.” We will go out to eat at an upscale restaurant, only to have me not be able to eat my meal. Or worse yet, I will eat a $20 to $50 meal only to rush to restroom and throw up. There’s nothing worse than throwing up in a “pristine” public restroom. I mean nothing . . .
Late last night, I became increasingly nauseated. I’ve become good at judging my nausea, whether I can just tough it out or whether I will end up face down in the toilet. As my nausea became increasingly “challenging,” I took 4 mg of Zofran — a drug given to chemotherapy patients to combat nausea. Zofran is a quick-acting sublingual drug. Typically, Zofran lessens my nausea in 5-10 minutes. Not this time. I decided to take 4 mg more of Zofran. “Surely, this will tamp down my ‘nausea’ to tolerable levels,” I thought to myself. Unfortunately, my nausea only got worse. Soon, I knew it was time to head to the bathroom.
As I haltingly shuffled to the bathroom, I put my left hand over my mouth, hoping to quell the gag reflex that was telling me to vomit right then and there. I made it to the bathroom without incident, knelt down, and violently vomited. And I mean “violently.” After ten or so minutes, I got up off the floor, washed out my mouth, and washed my face. I also had to wash my beard since it’s long enough that it drops into the toilet water when I am vomiting. Gastroparesis, a gift that keeps on giving.
I shuffled back to the living room, plopped down in the recliner, and started watching the Big Ten Men’s Basketball Conference Tournament again. (Ohio State lost. Damn you, God.) I had Bethany get me a glass of room temperature water, hoping to remove the taste of regurgitated food, stomach acid, and bile from my mouth and ward off the dehydration that was sure to come.
Typically, once I have vomited I do not vomit again. Unfortunately, on this Mother of Gastroparesis Day, I repeated my first bout of vomiting. Afterward, I checked my blood pressure. It was 180/100 and my pulse rate was a racing 120. People can and do have heart attacks or die from violent bouts of vomiting. I took 100 mg of Hydralazine to drive down my blood pressure. Worse, the muscles in my abdomen, chest, and back were screaming. The muscles in my abdomen were so stressed and inflamed they were protruding. I saw and felt numerous knots in my abdomen, the direct result of the toll the two bouts of vomiting took on my body. Today I feel as if Polly beat me with a baseball bat.
What I have shared above alone would be a top-of-the-charts day. This night, however, was only getting started. Earlier in the day, I had a bowel moment. Somewhat normal, not too much work. Yea! A couple of hours later, I had another bowel movement, and a while later yet another one. These shits were looser, but still within the normal range. (People with gastroparesis spend a lot of time thinking about eating and shitting.) In the early morning hours, things changed. I had two successive bowel movements that were watery, smelly, and oily. Not a good sign. Thinking things were somewhat under control, we headed for bed. It was 4:00 am. Polly had come home two hours early from work to care for me. I was weak and unstable. I rarely ask her to come home, but I needed her help.
Polly quickly fell asleep. Damn, I am so jealous. I would not fall asleep until 10:00 am, six hours later. Thanks to the herniated discs in my upper back, I have to lie on my right side, with my head propped up with four pillows. Typically, I put my iPad Pro on the nightstand on my side of the bed — 12 inches away. I put on my MPow Bluetooth headphones, turned on the Apple+ app, and started watching The Mosquito Coast series (which is nothing like the 1980s movie with the same name — one of my favorite movies). Two episodes in, I felt a sudden urge to use the bathroom. I stood up, and as I did, my bowels exploded. I shit all over the bed and floor. As I made my way to the bathroom — twenty feet away — I plopped shit on the carpet and on the bathroom floor. My backside and legs were covered with smelly oily shit. I sat down, said WHAT THE FUCK, and emptied my bowel. Or so I thought I was emptying my bowel, anyway. Once I was done, I reversed my steps, cleaning up the mess I made. Thirty minutes later, this happened all over again. Then, at 8:00 am, I would have the mother of all bowel explosions.
After my second mess and clean-up, I brought two bath towels to bed and put them on my side of the bed. Back to The Mosquito Coast. Around 8:00 am, I felt an overwhelming urge to shit. I mean right now, do not pass go, do not collect $200. I stood up and then it happened. I said NOOOOOO!, grabbed one of the bath towels and put it up to my ass, trying to stop the mess that was coming. I ended up with shit on the bed, floor, wall, curtain, nightstand, and iPad charging cable. along with shit on the dining room carpet, bathroom floor, and toilet. I later washed up my backside.
I finally fell asleep around 10:00 am, waking up at 4:00 pm. Polly came into the room and said she needed to strip the bed so everything could be washed, including our electric blanket. I am washing our bedding now. The oily shit permanently stained our padded bed cover. It now smells clean, but it sure looks like shit — literally. 🙂
I asked Polly to take a look at my backside to make sure I was shit-free. She started laughing. River Shit had cut a course down the back of my right leg. In between my toes and on the bottom on my feet were covered with shit too. Polly said, “Buddy boy, you need a bath.” I replied, “ya think?” We both laughed, and off to the bathroom I went to take a steamy hot, bubble-filled bath.
My life is back to “normal” today. Outside of a stained bed cover and lots of abdominal muscle pain, all is well. Or as I tell my counselor when she asks how I am doing, “I’m fine, wonderful, awesome, super, present and accounted for.” 🙂
Bruce Gerencser, 66, lives in rural Northwest Ohio with his wife of 45 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
Two years ago, I was diagnosed with an incurable, debilitating stomach disease called gastroparesis. As a result, I have lost 110 pounds. Constant nausea, lack of appetite, fits of vomiting, erratic glucose levels (mine dropped by 30 percent, changing my vision from nearsighted to farsighted), and chronic bowel problems are a few of the common symptoms. (Many gastroparesis sufferers end up on feeding tubes.) Bowel movements are often life’s greatest adventures. Will today be the day I shit? Gawd, that was the mother of all turds. Diarrhea? Really? I was constipated yesterday. Bowel movements every day for a week, and then no bowel movements for days. Gastroparesis, also called stomach paralysis, slows the movement of food from your stomach through your intestinal tract. Sometimes, food takes 4-7 days to make it through my system. My problems are further complicated by the fact that I also had my gall bladder removed several years ago.
As I typically do, after watching Around the Horn and Pardon the Interruption — two sports news programs — between the hours of 5:00 pm and 6:00 pm, I propped myself up on the couch so I could do some writing. Due to the herniated discs in my back and neck, I am no longer able to sit in my chair in the office and work, so the couch has become my new “office.”
I always hope that my bowels (or bladder) will leave me alone while I am writing. It’s no small feat for me to get situated on the couch to write, so I prefer not to move until I am done writing. Today would not be one of those days. All of a sudden, I had painful cramps, urgently calling me to the bathroom to make a delivery. I painfully got up from the couch, grabbed my cane, and shuffled off to the bathroom.
Before sitting down, I grabbed the latest issue of Orion Magazine that was sitting nearby. I always like to read something — anything, including the ingredients in the air spray — when I am taking care of business. My cramps suggested that I was fixing to give a massive offering to the porcelain god. Surely, I thought, this won’t take too much work. Boy, was I wrong! This day’s bowel movement took a lot of pushing, straining, and swearing (keep in mind that I take soluble fiber and bowel medication twice a day), causing increased pain in my upper back. Have painful herniated discs in your back and you will quickly learn how often you use your back for the basic daily functions of life.
After five minutes or so and one short Orion story, the deed was done. I turned around to look at what took so much effort, only to find a golf ball-sized turd. With nary a thought, I said out loud to the turd: that was a lot of work for that! 🙂
Bruce Gerencser, 66, lives in rural Northwest Ohio with his wife of 45 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
