Living With Chronic Disease: Taking the Time to Whine

Patient Expert

This isn't going to be a terribly informative post today. Rather I'm going to whine and moan for a bit. If you have any chronic health condition like IBD, IBS, or any other, then I'm sure you'll get where I'm coming from and forgive my lapse in keeping a stiff upper lip just now.

So, here it goes. . .

If you're a regular reader of mine then you know I have colitis and IBS and have had to be gluten-free for the past year and a half and I was treated six years ago with radiosurgery for an Acoustic Neuroma (AN) - a benign brain tumor. Typical symptoms of an AN are hearing loss because this tumor tends to grow on the hearing nerve. Well, since I seem to be anything but typical, my tumor is on my balance nerve and the only symptom I have ever had with it is vertigo - think anything from a woozy-board-a-ship feeling to bed spins that don't stop for hours or days or week. Even though the treatment has stopped the tumor's growth I can still get bouts of wooziness or dizziness.

But, I've gotten ahead of myself. Let's back up to this past Friday when my husband and I drove from our home in Colorado Springs to Steamboat Springs to visit with a vacationing friend we haven't seen in a year. This is a very good and long-time friend who is fighting cancer and I don't think I, or my husband, realized just how emotional and exhausting this trip would be.

Anyway, even though any kind of travel can be harrowing when you're never sure of what your gut is going to do or where the next bathroom is going to be, our trip went off without much of a hitch. Bathrooms were found. Lunch was eaten. And we only made one wrong turn that cost us 40 extra miles. So, we got to Steamboat by 7PM, settled into our hotel, and half an hour later we were ready to go find some dinner. Note to self, and any readers headed to Steamboat, restaurants here close at 8PM. So, not only did my crazy eating complicate things - you know,  gluten-free (GF), nightshade vegetable-free, spicy-food-free, cow's milk-free, yada, yada, yada - but now our choices were limited to Mexican, a late-night pastry shop (Not), or a pizza joint that touted gluten-free crust.

We chose pizza and for my first GF 'za I have to say it was pretty darn tasty. After dinner we decided to relax for a bit in a wine bar my husband had spied on our walk to dinner. I hunkered down at the bar with a glass of water while the hubby sipped a Spanish Jumilla. About ten minutes into our experience I had to go to the bathroom. The first restroom I found was occupied - of course! - but thankfully the second one, a floor down, was free. And what was to happen next? You guess it! Loose poop!

"Are you joking? Why?" I wanted to scream, but didn't.

At that moment, all my relaxation techniques and knowledge also went down the toilet. I refused to risk having to run back-and-forth to a possibly occupied bathroom so I went back to the bar and told my husband I'd meet him back at the hotel, and left. And yes, he did offer to leave with me, but I insisted he stay and drink his wine. He knew I hated having an audience when my gut let loose so he stayed for another half hour or so before returning to our room.

Thankfully our hotel was only a block away because by the time I got there I had to go to the bathroom again, and again, and again. By the third bowel movement I started to shake, first my right leg, then my right arm, then both legs, then my whole body. I had to be dehydrated, I reasoned. We were only at 7,000 feet, a mere 600 feet higher than our own home, but we'd had to go travel over a number of 10,000 foot passes to get from point A to point B and dehydration seemed the most logical cause for my shaking. So, I drank anything I could find - bottled water, Gatorade, and herbal tea - in-between bathroom calls.

By 11:30PM I was in the ER of the local Steamboat Springs hospital. I gave them my medical history and my current problems. In return, they took my insurance card and four vials of blood before hooking me up to an IV and wrapping me in blankets.

"I'm not cold," I told them between tears as I removed the blankets then dashed off to the bathroom trailing my IV buddy behind me.

When I got back I noticed I was the only patient in the entire ER and I had the on-call doctor and nurse in my room talking to my husband.

"Are you stressed?" the doctor asked me.

"I guess so. These bouts always stress me out a bit," I told her. I had become so accustomed to stress in my life because of my gut that it just seemed normal so it was hard to tell if I was a little stressed or very stressed.

At this point my husband spoke up and told them why we were in Steamboat. At which point I just started to cry and blabber about how hard it is not to be able to eat normally, or drive in a car without worrying about the next potty stop, or just be any semblance of normal and not actually think about my gut. By this point my blood tests came back and all was normal and good. A relief, yes, but frustrating all the same. What in the heck was causing all the shaking and pooping, then?

As I calmed down and wiped my eyes, the doctor said, "I think this is anxiety." She explained how adrenaline can cause tremors, or shaking, in the body. She also noted that I seemed quite stressed and anxious to her. "You think?!" I shouted in my head. Needless to say, they gave me some medicine for the nausea I had been experiencing as well as some to calm me. An hour later we were back at our hotel and asleep.

The next two days with our friends were emotional but nice. And by Monday we were back in the car headed through the 300 miles of mountain roads toward home. I was feeling pretty well until today, the morning after we arrived home, when I woke at 5:30AM with bed spins. The vertigo is back. Frustration then tears then anger then the bathroom. That's about how my day has gone today. I've talked to the neurosurgeon and have been told the same thing he's told me in the past, "the tumor is shrinking but that can cause a change in your balance nerve which can cause the dizziness." Which in reality is good, but once again my life is on hold and the more I write this the faster my head spins and the more I have to go to the bathroom.