Ramendra Kumar who has previously shared his experiences with colon cancer and believes in the power of humour, writes about the challenges of learning to live with the stoma bag.
Read the first part of Ramendra's cancer story and the second part here.
When my daughter Ankita was born, I made it clear to my wife Madhavi that I would not change her nappies (Ankita’s nappies, fortunately Madhavi had far outgrown that stage!) I told my soul mate that I would, in every other way, care for our little bundle of joy. I would feed her, sing lullabies – though I admit, I am the second worst singer on Planet Earth ( the worst, by far, being my father!) – I would give her a bath, tell her stories, dance to her gurgles….anything and everything except cleaning her poop. Crap completely grossed me out.
Who knew then that three decades later I would be wallowing in my own shit both figurately and literally.
Gobsmacked! Let me explain. In November 2021, I was diagnosed with Colon Cancer – Stage 2. After several cycles of radiation and chemo therapy, the daadi of all surgeries (Colostomy) was performed on 16th March 2022. I was decolonised – my colon (large intestine) was removed. The small intestine was brought out and a stoma bag was fitted to collect the faecal matter. Though the surgery took eight hours there was no major issue and I was released from the hospital in three days. Since the doctors felt I had handled it like a champ they decided to go in for the Ileostomy closure on 6th April. This basically meant reconnecting the small intestine to the rectum and doing away with the stoma bag.
This was a much, much simpler operation but turned into a complete nightmare. 3 septic shocks and two surgeries later I was back with the stoma bag. The ‘crap collector’ which I thought would be an itinerant visitor had returned like a prodigal– this time for keeps!
And, my unwanted guest was not a well-mannered boarder. It was a reckless profligate to say the least. The last two surgeries had resulted in a long and deep cut in the middle of my abdomen which took a long long time to heal. As a result, the base plate of the stoma bag would get soggy due to the discharge from the adjacent surgery site and peel off and its ‘precious’ contents would spill all over.
Replacing the visitor with a new avatar, or to put it simply, changing the stoma bag needed professional expertise and we had to engage paramedical staff. Due to the traffic congestion and the distances in Bangalore, the nurse would take time to reach and I would be stuck with the muck.
The leakages continued randomly, and usually at the most inopportune moments. Even though I experimented with different types of em’body’ments, my body continued to ‘settle’ on my ‘stool’. On some occasions the fault was the material (the quality of the bag), on others it was with the man (the nurse) but in the end, the trauma was all mine! I seemed to be drowning in my shit and ‘owning’ that of others’.
In the initial stages even emptying the stoma bag was not easy. I was very weak and Madhavi had to help me out. After a while, I slowly learnt draining it on my own though I found the whole process disgusting. It was also mentally disturbing having the stoma bag always attached to me. It served, and still does, as a constant reminder of my, far from normal, condition.
I have been trying my best to get used this new attachment, a tough task by any standards. I have to empty it around 7 to 8 times during the day and a couple of times at night. Since I am a very, very light sleeper I can sense when the bag is full and needs to be cleared. This, naturally, is a deterrent to proper sleep.
Necessity, it is said, is the mother of invention. I never found this cliché ring truer than when I started groping for solutions to managing my Stoma bag.
I did a lot of research and zeroed in on a ‘Ostomy Bath’ apron. To my relief I found that the stoma bag fits quite snugly inside it. The apron is quite easy to wear and has enabled me to travel without the stress of the bag leaking. Of course, I did have to make a few adjustments of the sartorial kind. I can no longer tuck my shirt in. Either I wear it out or don a blazer, weather permitting of course. This is a small price to pay for the relief and the freedom. The ‘Ostomy Bath’ apron coupled with a tweaked wardrobe has helped me in keeping my trysts with storytelling and public speaking. I have even gone on stage and danced, and for a few evanescent moments, drained cancer out from my sensibilities just like I empty the stoma bag.
My son, Aniket, also indulged in some due diligence and bought me an Ostomy swim wear from Spain. I make sure my stoma bag fits cosily into it first, then wear my normal swimming costume over it. This way I have been able to swim, a passion which has provided emotional, mental and physical succour.
Another major breakthrough has happened, courtesy Madhavi. Over a period of time, she has learnt to replace the stoma bag. In fact, she is doing a far better job than the nurses. This has come as a huge relief. Now I no longer have to depend on an external agency and the vagaries of the weather and traffic snarls. Support is right beside me in the form of my ‘Rock’ing Angel!
So finally, after more than a year of ‘sleeping with the enemy’, I have finally succeeded in morphing the adversary into a Siamese twin who needs to be accepted and managed, not fought against or ignored.
Dancing at his book launch
Listen to Ramendra share the first part of his lived experience here:
