I have seen chronic pain and I wouldn’t wish it on anyone.
(my father’s fight with interstitial cystitis)
The doctors had given a list of foods that were triggering. Mama had read it again and again, memorizing every single ingredient to avoid in Baba’s meals. No spices, no tomatoes, no garlic. Nothing sour. Definitely no caffeine. It was restrictive, to say the least. But she tried her best to work within the new bounds, coming up with creative dishes that might satisfy his tastebuds and doctors’ orders.
On this occasion though, her attempts fell short. It was Aysha’s birthday and we were all sitting in our kitchen nook, ready to eat lunch … one of her favorites — biryani. It was also one of Baba’s favorites but Mama had prepared something for him with less trigger ingredients. Baba wasn’t happy. His round, chocolate eyes looked tired. He had aged fifteen years in the past five. Why was she subjecting him to eat this, he asked. Nothing was working. It had been years. He felt horrible anyway so why was she taking away the little joy he had left in his life.
“We have to stick to the list. I don’t want things to get worse.”
“I don’t give a shit.”
“But Baba you have to at least -“
“Just be quiet!”
He started yelling. About how he was tired of the food, tired of us, tired of this life that he felt painfully, tortuously slipping through his fingers. We had heard it all before, but it got louder and louder and louder.
And then my father, my big, strong Baba, absolutely broke down. Sobbing. Bawling. He laid his head on the table and covered it with his hands, as if that would somehow make the pain stop. We all broke down with him, letting out years of stress and worry, and piling on top of him, as if that would somehow protect him. Somehow make the pain stop. Make the damn pain stop. But the pain, of course, didn’t stop.
Flash forward a few months. Aysha’s graduation ceremony is in forty minutes and we haven’t left the house yet. We are waiting, as is our routine, on Baba. He has been in the bathroom for over an hour. We knock to check in and he says to go without him — today’s a bad one. We calm him down, telling him we are waiting and there is no rush. It is ok. He will make it to the graduation, we will make sure of it. He says okay, he is going to try.
We check in on him a few minutes later and find him sitting on the toilet, face in his hands, crying. Crying that he is ruining such a special day. Crying in defeat. Crying in pain. We cry with him.
I will never forget how I felt in these moments, watching my father struggle with his mortality for the first time. It was such a specific feeling. Like my heart had a million pound rock placed on top of it, the strain almost too much to bear. Like I couldn’t breathe. I guess this is what heartbreak must feel like.
Maybe five or so years ago, my father noticed that he was experiencing some retention of his urine, so he went to the doctor to see what might be going on. The doctor’s first thought was that he had benign prostate hyperplasia (BPH), a fairly common condition affecting older males which involves the enlargement of the prostate. The prostate is a small gland that the urethra, the tube that connects the bladder to the outside world, runs through. Enlargement of the prostate gland would lead to obstruction of the urethra, preventing urine from flowing through.
His main symptom and his demographics checked out. No other noticeable concerns. It was a simple case — medication was prescribed to help shrink his prostate and he was sent home with assurances that things would be better in no time. But things did not get better; in fact, they got much worse. I remember the retention becoming so severe that we had to run to the ER on more than one occasion to find a way to empty out his bladder. And there was a pain that had popped up along with the retention, intermittent throbbing and burning, that forced him to go back to the doctor for more answers.
And so started the quest to diagnose Baba’s mystery illness. Multiple urinalyses, urodynamics tests, cystoscopies, ultrasounds, TURPs, TURBTs, and a couple of doctors later, we still didn’t have an answer. No diagnosis. Urinalyses showed no infection. The prostate looked normal. The bladder looked fishy in one of the ultrasounds and there was a cancer scare, but the tissue taken in the TURBT showed only inflammation — no malignancy. So what could it possibly be? Some doctors felt that the symptoms might be explained by diabetic neuropathy. As a diabetic (whose sweet tooth knows no bounds), my father is at risk for nerve damage (due to mechanisms that I won’t bore you with here). This can manifest itself as decreased contractions of the muscles of the bladder, which might explain some of his symptoms. Other doctors felt that this could be chronic prostatitis which is less likely to show active infection in diagnostic tests. We tried various therapeutic tactics to help alleviate his symptoms including long courses of antibiotics; bladder muscle relaxants; neuropathic pain medications; physical therapy; homeopathic medications; and trigger food reduction. Some worked better than others but in the end, he was still left struggling for hours in the bathroom trying to void, and managing the worsening associated pain.
Around this time we had started seeing a new urologist, Dr. K, who decided that Baba’s bladder needed a break. Dr. K strictly prescribed the utilization of straight catheters every time Baba needed to void. The short term goal was to allow the bladder some downtime with the longer term goal being the regeneration of the damaged nerves (given proper blood sugar control). The self-cath method helped with the voiding aspect, but worsened the pain through constant mechanical trauma to the urethra. The catheterization also led to UTIs which only added to the pain. But as the pain worsened, his bladder was less able to handle holding even small amounts of urine and so the catheterization frequency increased. Thus began a vicious spiral downward that eventually brought my father to a place without any hope in sight. On more than one occasion he told me that his life did not seem worth living anymore. I started having nightmares of coming home to find that Baba had succumbed to the depression and darkness that had enveloped his entire being. He couldn’t take it anymore. We couldn’t take it anymore.
We reached out to his urologist and asked him to take it out. End the misery and remove Baba’s bladder. Dr. K wasn’t too keen. My father also had a very extensive cardiac history, with multiple heart attacks, including one that occurred one day after a bladder procedure, perhaps due to the cessation of anticoagulants to prevent excessive bleeding during the procedure. He was a high risk patient for surgery, the surgery had life-altering implications, and there was no guarantee that the surgery would be the end of the pain.
Interstitial cystitis (a diagnosis of exclusion, with a very poor understanding of the etiology) had been thrown out throughout the years as a possible cause of Baba’s symptoms. Dr. K wanted to try bladder instillation therapy before thinking about surgery. Bladder instillation therapy involves the injection of a cocktail of medications (in my father’s case — heparin, lidocaine, and bicarbonate) into the bladder through a catheter. The medications sit in the bladder for as long as the patient can tolerate, and then they are voided. It is done weekly for six weeks followed by maintenance treatments as necessary. It is a treatment used for patients with interstitial cystitis with variable efficacy, working surprisingly well for some and not at all for others.
This is what the urologist prescribed for him, along with strong NSAIDs to help in the interim. We left, thinking that this would be yet another one of the dozens of therapies we had tried over the past five years that would ultimately do nothing, and bring us back to the same place — surgery. But still, it was worth a shot. He had his first instillation on Feb 13, 2020. He felt a bit better that week but nothing miraculous. We continued the instillations for the next six weeks with bated breath, preparing for the worst. It was so difficult to keep hope alive when we had been let down time and time again. But in absolute shock we witnessed Baba slowly begin to heal, both physically and mentally. His symptoms lessened and his outlook on life brightened, more than we had seen in a long, long time.
Aysha’s wedding was on March 27, 2020. This time there were no visits to the bathroom, no pain, and only happy tears.
My father really encouraged me to share this piece publicly, telling me that when he was suffering through all this, he used to scour the internet for answers, and more than that, for people who could relate to his experience. He wants individuals who are enduring something similar to know that they are not alone. And that there is hope, always.