Living with Chronic Pain: My IBS Story. #Stories4Health

I was fourteen when I had my first flare-up – that is what they call it. When it hurts so bad and nothing seems to make it stop. I was in class when a sharp, throbbing ache gripped the left side of my stomach and nausea floated the beans and posho I had just had in my mouth. It was like nothing I had ever experienced before; an indescribable pain that gradually spread all over my abdomen. Little creatures were cutting up my intestines and tying them up in little knots. The nurse was uninterested. She gave me two Panadols and sent me back to class. I do not know how, but I managed that lesson. That was the first in a series of engagements I would have to sit through while stomaching (all puns intended) debilitating pain. The little creatures attacked again three days later. More Panadol. During that school holiday, I had my first ultrasound which, along with the blood, stool and urine tests revealed that I was in perfect health. That would be the story until eight years, tens of doctors, hospitals and home remedies later, when I was diagnosed with Irritable Bowel Syndrome (IBS).

I spent the better half of my fifteenth-year between school and hospitals, consulting this and that doctor. That was also the year I last got any kind of relief from pain killers. It would creep up on me, the pain; in the middle of a Biology lesson, at the lunch table, during Saturday afternoon choir practice, during dances. It still does. I barely made it through three of the final examinations, because, as I later confirmed, the brain cannot multitask with pain. I begged the invigilators to let me out of the claustrophobic exam room because someone had cut open my stomach, poked holes in my intestines and was rubbing red peppers on them. At least that is how it felt.

At sixteen I joined a new school, made new friends and started playing basketball. This was the year I first experienced consistent bloating, flatulence and unpredictable (and dramatic) bowel movements of high intensity. Picture this: it is the middle of night prep; the silence of a graveyard and my stomach won’t stop grumbling. Forty boys and girls are reading, speaking in hushed tones, passing the time. The sound from my stomach can be heard all the way at the back, where the laughter begins but I am in too much pain to be embarrassed.

A few days after my seventeenth birthday I had what was to be the most agonising episode yet. A group of friends and I were discussing the Keynesian theory in class when it struck. There had been no warning; the initial dull aches and nausea that I had gotten accustomed to did not present, only a thick, solid pounding in my left side. My mind came from absorbing Economics to complete numbness. I felt defeated. I was in excruciating pain; I could not sit straight, I could not walk, I wept as three girls carried me to the dormitory. I was in perfect health the next morning.

At twenty I went on an elimination diet to try and work out what was causing me so much grief. For six months I ate nothing but boiled potatoes and matooke, cabbage and greens, peas and fruits. I drunk only water, fruit and veggie juices. While I dropped half a kilo and my skin glowed, nothing else changed. I bought a form-fitting dress for a friend’s birthday but did not get to wear it that evening because my stomach had distended from all the gas I had run out of ways to expel.

On my twenty-first birthday, my friends and I put our freakum dresses on and went to the bar. It promised to be a good night; the DJ was right, booze flowed and the dancefloor was mine. A tiny discomfort at the base of my stomach quickly turned into a thick hot stone. I held it together for a bit; for my party, for my black and gold mini dress and stilettos, for the fun night we had anticipated for weeks. I spent the rest of the night in the back of a car, waiting to feel better so I could retake my place on the dance floor.

At twenty-two, I was diagnosed with IBS by a gastroenterologist. I sat in her elegant, white office listening to her interpret the results of a battery of tests and painful, invasive procedures I had done. I had previously come across IBS on Google but it had not occurred to me that it was something I could have. It felt so far removed from me, so unreal, out of context, like going to the moon or walking in the snow. I believe this denial was, in part, because none of the doctors I had seen in eight years had mentioned it. They had mentioned intestinal obstructions, hormonal imbalance, kidney disease, liver disease or nothing at all. She said it was a diagnosis of exclusion, a condition that did not have its own tests and protocols because it was still enigmatic. I learnt that the pain was a result of an imbalance in the bacteria of the gut, poor communication between the brain and digestive system, uncoordinated spasms in the large intestine and a host of psychological factors like anxiety and sadness. It could not be treated, but it also was not fatal. It could only be managed with dietary changes, hydration, exercise, stress management, and an occasional Mebeverine and probiotics.

At twenty-three I had my first pain induced blackout. It was band night and the action had barely started when it flared up. The pain and anger rose in equal proportions; angry at my body for doing this weird thing where it hurt almost every day, angry at science for not having a solution to it, angry at my terrible luck as everybody sipped their drinks and swayed to the band, angry at myself for being angry. After the anger came sadness; for needing to leave, for being such a predictable inconvenience, for being in pain all the time. I do not remember the point at which I passed out, only that I came to as we approached a hospital. And so, it continued. 

There have been some bizarre moments. Sometime in my twenty-fourth year, a lunch of groundnut sauce and matooke had me spending the rest of the afternoon lying in the back seat of a work mate’s car.

It begins in waves on a typical day. Subtle discomfort that steadily grows into violent throbs and a full-on emergency by the top of the hour.

Towards the end of my twenty-sixth year, I travelled 400kilometres to visit family. It was a wonderful, heart-warming weekend filled with love and stories of my father’s childhood. I had made a bargain with my stomach to give me just that one weekend and I had done everything right; had my meals on time, three litres of water a day and relaxation exercises. I didn’t want any interruptions. It had obliged until the second night when it forced me to leave a room full of relations to lie down and abate the pain. It was raw and unforgiving; vengeful, it felt personal. Even worse, I left the food untouched, something of an abomination. I woke up the next morning to find my aunt cooking herbs that would make me feel better. I was touched. I longed for healing, even more, her love and care would not be in vain.

Accepting this diagnosis took time. I did not want to believe it, so I did not. I continued to bask in denial, refusing to be sick, to have this thing looming around my body. I desperately wanted to be okay, to not have a condition that would never go away. I carried on with my life, I just had these nasty stomach aches that sometimes rendered me useless. It hurt when I was hungry, it hurt when I ate. It hurt when I drunk a glass of water, it hurt when I guzzled a beer. It hurt when I exercised, it hurt when I did not. It hurt when I ate a mango, it hurt when I ate pizza, it hurt when I ate anything, everything and nothing. It hurt when I was excited, it hurt when I was anxious. I got used to living with the pain, my friends and family got used to me being in pain.

 I am now recovering from a three-week flare-up. The fact that COVID 19 was everywhere I looked did not help much on the anxiety and stress front, but I survived. I continue to survive, day by day, flare-up by flare-up.

Photo by Clip Dealer.