My phone’s calendar alarm sounded again this morning, this time to remind me that today is the 2 year anniversary of the creation of my ileostomy. Again, I set event alarms like this to remind me of what I’ve gone through, how far I’ve come, and that, like storm clouds, my body and mind are ever-changing.
I made the decision after 5 minutes of discussion with my surgeon in his office, not even having considered the possibility beforehand. I was there because 8 daily 35 minute bathroom visits were demanding most of my waking hours, and because further progression of my colonic myopathy was requiring forceful straining, causing serious hemorrhoids, both problems pushing me deeper into pain, isolation, and depression. My surgeon listened to my account of how I was struggling through my days since my rectal-sparing colectomy nearly 3 years before. Without hesitation or physical exam, he plainly stated, “the only way to get you out of the bathroom is with an ileostomy,” and that I was going to “simply have to think of my pain in a different way and just get on with life.” Right. But the ileostomy bit was logical, so I quickly consented and we scheduled the surgery in 2 weeks. As I spent one of my 8 daily sessions in his office bathroom before Danusia drove us the hour home, I could only shake my head in disbelief at what had become of my life and how my surgeon had nonchalantly dismissed my pain as something I could control by merely flipping a switch in my head. Doesn’t anyone think that if that were possible I would have done it 5 years ago? I don’t think I uttered more than 3 words to Danusia the entire ride home.
A week before surgery, Danusia scheduled Mary, a WOCN (Wound and Ostomy Care Nurse), to drop by for an ileostomy show-and-tell with all the props and products, to teach us how to change and manage one, and to measure for the surgical placement of my stoma so that its position wouldn’t interfere too much with clothing. I was sick and anxious that day, but I do recall Mary being very energetic yet patient, and saying she was an equestrian. I wanted to talk about the local trails, where I spent my free hours riding before getting sick, where she would be riding too, but talking at that time was deeply draining and a sure trigger for nausea.
After the hour’s drive, Danusia and I arrived at the hospital an hour before my scheduled surgery at 11:00. By 12:00 there were no more interviews, forms, IVs, stoma markings, or patient dos and don’ts to do. I was cold, weak from being without calories for 18 hours, in pain, and getting increasingly irritated at the delay. 13:40 — I quietly demanded of my nurse, “Am I going to have my surgery today, because if not, I need to eat now and leave.” Much scurrying began around me and outside my curtained cubicle. 13:50 — the anesthesiologist finally gives me a calming, memory-freezing squirt of versed mixed with a nausea-swallowing shot of zofran. 14:00 — I am somewhat relieved from the medicine and from watching the ceiling quickly reel past above. 14:08 — “Can you slide across to the OR table and bring your blankets with you?” “Sure. Can you go get the surgeon so we can start today?”
16:30 — In recovery, Danusia handing me juice, nurse asking if I’m ready to leave recovery for my hospital room. I reach underneath the blankets and feel the ileostomy pouch on my right lower abdomen. I look at Danusia pleadingly, silently wondering if I’m going to be ok, if the surgeon was happy with his work, if I’m ever going to get something of my life back. The next three days were exercises in sleep deprivation, force feeding, mess control, and bearing my thin, naked body to all eyes of the rotating care team. I would have to buzz the nurse in every 2-3 hours to empty my pouch, as I was bed-bound and straight-jacketed by monitors, tubes, and IVs. Most nurses were fastidious and kept things (me) clean, while others were hurried and commonly spilled the pouch contents on me or my sheets, which would then have to be changed, at least a 10 minute ordeal.
The day of my discharge home, the hospital’s WOCN came to change my wafer and pouch. She completed the change and our education in about 15 minutes. It hurt, but seemed easy.
Not to be the case.
Ileostomy appliance changes the ensuing months were awful most every time. Worse, the others. It could take 20 minutes or 90. The longer it took, the more skin we eroded from repeated cleanings, the more it hurt, the longer the recovery. That, on top of my usual symptoms of illness, were dividing my mind and body into enemies, deepening my soul’s struggle, and deepening the depression. My psychiatrists loved to run wild in my body’s pharmaceutical playground. Why not, they could leave the grounds anytime and might just luck out and actually help me for simply having played there.
At night I was having acute dyskinesias, rapid involuntary movements of large muscles as in restless legs syndrome. But I had a sensory component involved in the dyskinesias as well. After going to bed, it would start: phase in of a slow neuro-electrical burning sensation radiating from my spine’s center outwards through my chest and arm into my hand, summating in my left arm tossing itself 180 degrees across my torso. This would happen about every 7 minutes for an hour or so. I would also have whole body dyskinesias from which I would sense the burn of electric fences starting as hot coils around my spinal cord and radiate along every nerve root through my anatomy to their very ends in my skin. The metaphor extends to experiencing the type of muscle contractions generated by electrocution from a fence, from which you can’t let go. Or it won’t let you go.
Of course, my psychiatrist wanted to prescribe drugs for the dyskinesias, while taking me off the one that could be the culprit, then add in a few to cover that deficit. Complicating matters, I had started having panic attacks and recalcitrant insomnia, and he observed me to be withdrawn and increasingly despondent. I just couldn’t mentally break free of my body and its unwelcome appendage.
Soon, I again entered the full time search for pain control, seeing a highly recommended pain specialist 9/22/10 and having her surgically implant a spinal stimulator in my back 3 weeks later, another post in itself. My first visit with a pain specialist was 8/12/08. I was sick, he was 45 minutes late. No apology, just a 35 minute lecture on my prospects, failings, his education, and self-promotion. I managed 1 question to Danusia’s 10. Then he showed us the battery control units he would slip under my skin that would join electric leads threaded in the epidural space along my spinal canal. I left with one thing, and it wasn’t confidence in him or the device. It was an appointment with a pain therapist, who saw most of the pain doc’s patients. Her office was an hour from our house and Danusia would have to take the day off and drive me there, wait an hour on my session, then drive us home. The in person sessions consisted of the initial “how are things?” analysis, then 45 minutes of clicking answers to multiple choice questions from personality inventories. We never discussed my ileostomy in person. Maybe we should have.
The ileostomy was terribly difficult to adapt to: after changing my appliance, my stoma site would burn and itch under the plastic adherence plate, the wafer, for days. Often, my stoma bled into the bag, a common occurrence with stomas, but disconcerting to see nonetheless. Learning how and when to empty the pouch was like a childhood chore, one that can never be finished. Sleeping was stressful, to use a word. I couldn’t sleep on my stomach. Sleeping right side down would push on the wafer, which feels like shearing a large band aid off your skin. I would sleep even lighter than usual, fearing I wouldn’t awake before the bag overfilled, bursting its contents all over me and the bed, fortunately something that I haven’t experienced. My wardrobe wouldn’t do — pants would cut off pouch flow or compress my stoma site and it seemed as though my pouch could be seen bulging out beneath all my shirts. I tried stoma guards, like sports kneepads, to protect my stoma from unintentional bumps, to hold all in place during activity, and to keep seat belts from exercising their restraint directly on my stoma. But the guards were very uncomfortable and cumbersome, and would migrate into a more uncomfortable position when I sat or stood up, regardless how tight I’d cinch the belts. I could go on, but . . .
It’s just the weather again. As expected, mind and body have changed again. Today, I cinched the belt of my riding knickers over a new ileostomy appliance I had just changed, by myself, without shaking from anxiety, and in under 5 minutes. Then was out the door for an hour on my bike, like last Sunday, and many Sundays before that. I’m adapting and starting to accept the fact that my ileostomy, despite our rough beginnings, has my best interest at heart. It’s allowed me to nourish myself, reclaim 5 hours a day back from the bathroom, get out of bed and ride my bike again, and make many lasting fantastic ostomate and chronically ill friends. I still have to wear my windbreaker often, but now I can say having ileostomy surgery was life-saving, literally.
I have no pictures of my stoma, but after a year and 10 months, I found the courage to make this how to video as a contribution to the Ostomate community that did the same for me:
© Cary Gossett and Rollin With Outta Colon, 2012. All Rights Reserved.