Diaries of a Pouch Bearer

Hello World!

Hi there, I am Nav; a 30 something diagnosed with Ulcerative Colitis (commonly referred to as UC) in 2008 and now living with an internal pouch for the past 13 years. What is Ulcerative Colitis you ask? Without boring anyone with the anatomy, let’s dive in and familiarise ourselves with a condition that affects more than 500,000 people in the UK.

What is Inflammatory Bowel Disease (IBD) and Ulcerative Colitis?

To quote the NHS website, IBD is a term used to describe conditions that cause severe tummy pain and diarrhoea. The most common types are Crohn’s disease and Ulcerative Colitis (UC). Although this blog will predominantly focus on UC and my love affair with it; there will be some overlap with Crohn’s disease (more on that later). 

IBD is sometimes confused with Irritable Bowel Syndrome (IBS), owing to the similarities in their symptoms. However, it is important to note the distinctive features, as treatments vary. 

The purpose of this blog is to inform and raise awareness, not to delve into the differences between conditions and their respective treatments. As such, please use the following NHS link should you wish to learn more about IBD and IBS:

https://www.nhs.uk/conditions/inflammatory-bowel-disease/

What is an Internal Pouch? 

An internal pouch is required when conventional treatment fails to control your condition. A pouch is created following a two or three-part surgery to remove your large intestine and rectum and create a ‘J pouch’ to offer “normal” bowel function. 

Please click on the following link and watch the helpful video to understand this process better: 

https://www.crohnscolitisfoundation.org/what-is-ulcerative-colitis/surgery/j-pouch-surgery

While stoma surgery is ordinarily considered a complication of your IBD, the creation of a pouch is becoming increasingly common with abdominal complications linked to cancers, diverticulitis, and trauma to the abdomen, resulting from a car accident or major injury.

About

This blog would not have transpired were it not for the unending and unwavering encouragement of my wife, Sahiba. Yes, the title refers to an individual; but this a collective effort and certain elements of this blog are a public display of affirmation towards my better half.

The Aim

I’ve sat on the idea of writing a blog for more than two years; unsure of my reasons and what would motivate me to make my story public. Now, my hope is to use this blog to reach out to those suffering in silence and create a network of support for patients and caregivers alike. 

Living with a chronic condition, IBD or otherwise, can be extremely debilitating and isolating. This blog is to assure you, patient or caregiver, you are not alone. This is a forum to discuss topics and share advice – as IBD is mostly prevalent in under 30s, I feel it’s imperative to share my experience and assist anyone riddled with doubts and weighed down by internal struggles. 

I understand the toll it takes to live with a hidden condition; to be in your early 20s and be bed bound, rather than enjoying university or travelling the world. 

It sucks. I get it. But with 17 years of experience and wisdom, I can confidently say, “this too shall pass” (pun truly intended 😉).  

While there are always exceptions, the South Asian community remains an unwelcome environment to speak openly about chronic illnesses. Be it stigma around the condition, unnecessary whispers, or your parents’ concerns about finding an appropriate match; it has been difficult to own your truth. 

The new Gen Z crop are more open to talking in a public domain and less concerned with judgment – I have them to thank too. I hope this blog can resonate with the millennials, Gen X and boomers in the community. We need to strive to create a community where being ill isn’t tantamount to being weak. 

So, let’s embark on this journey of learning from one another and being more comfortable talking about 💩