One Step: An Informative Introspection on the J-Pouch Surgeries

By Tara Sarathi

"One Step: An Informative Introspection on the J-Pouch Surgeries" is a must read for any Ulcerative Colitis or Familial Adenomatous Polyposis patients who are considering undergoing the J-pouch surgeries as part of their treatment plan. Author Tara Sarathi takes readers through her experience of the surgeries and demystifies the process by providing relevant facts and statistics from the medical literature. Patients with Crohn's Disease or patients with an Ostomy will also find enjoyment in the read.

The process can be daunting for any patient who is faced with the prospect of having to go through the ileal pouch-anal anastomosis, or J-pouch, surgeries. Having to accept the idea of needing surgery already creates a heavy emotional toll on prospective patients, but the number of negative patient testimonies and misinformation found on the internet about the process does little to decrease the anxiety prospective J-pouch patients often experience. This must-read book offers need-to know information for prospective patients so they can make informed decisions with comfort and confidence.

• Language: English
• Publisher: BookBaby
• Release date: Oct 23, 2021
• ISBN: 9781098386924

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Copyright ©2021 by Tara Sarathi

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, write to the author at [e-mail].

Cover and Book Design By: BookBaby Publishing

Editing and Production By: BookBaby Publishing

Print ISBN: 978-1-09838-691-7

eBook ISBN: 978-1-09838-692-4

Printed in the United States of America

First Edition

This is a work of creative nonfiction. All of the events in this memoir are true to the best of the author’s memory. Some names and identifying features have been changed to protect the identity of certain parties. The author in no way represents any company, corporation, or brand, mentioned herein. The views expressed in this work are solely those of the author.

Although the author has made every effort to ensure that the information in this book was correct at press time, the author does not assume and hereby disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether such errors or omissions result from negligence, accident, or any other cause.

This book is not intended as a substitute for the medical advice of physicians. The reader should regularly consult a physician in matters relating to his or her health and particularly with respect to any symptoms that may require diagnosis or medical attention.

Table of Contents

Foreword

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Epilogue

Acknowledgments

Acronyms

Glossary

References

Foreword

Dear Reader,

Thank you for taking the time to read this book. After my physician told me that I would need to undergo the J-pouch surgeries, I struggled both emotionally and mentally to come to terms with what was about to happen to me. I was terrified about having surgery, and as a result I anxiously scavenged the Internet for personal stories detailing the process, hoping to find a story with a happy ending that would alleviate all of my fears and that would factually answer all of my questions. Instead, what I found was a handful of negative patient testimonies and a plethora of medical advice that may or may not have been based on medical facts.

In response to my experience going through the J-pouch surgeries, I wanted to write a book that would serve three purposes:

Provide a positive and relatively smooth J-pouch testimony to those who are anxious about going through the J-pouch process. While the negative J-pouch testimonies that I read online are valid and do reflect the experiences and thoughts of the people who wrote those testimonies, the negativity of those stories often raises the anxiety levels of those who do not know what to expect. As a result, I wanted to provide a positive testimony, in order to assure those who are about to go through the J-pouch process that yes, positive J-pouch stories do exist, and that no matter how hard the process may become, one way or another things will work out in the end.

Provide relevant facts and statistics from the medical literature about the J-pouch process. Part of going through the J-pouch surgeries involves being inundated with new vocabulary. As a result, I wanted to provide a centralized location that utilizes the medical literature in order to accurately define these new terms. Furthermore, after searching the Internet for patient testimonies, I ended up forming a distorted mental image of the what the J-pouch process would be like for me. It was a mental image where I would suffer from nothing but complications. In response, I wanted to provide statistics on the rates of complications to assure those who are about to undergo the J-pouch process that statistically speaking, the rate of complications is relatively low.

Provide a step-by-step, personal testimony of my J-pouch surgery. After having gone through all of the J-pouch surgeries, I want to assure those who are about to go through the surgeries that what you are about to experience emotionally is perfectly natural, and that there are plenty of people out there who have gone through the same process. You are not alone.

Thank you again for taking the time to read this book, and I really hope you enjoy the read.

Chapter 1

His office was a lot bigger than other physician offices that I visited. The walls were covered with academic degrees and credentials, and his desk, which took up half the room, was oddly barren except for a computer. A large floor to ceiling bookshelf, filled with medical books ranging in topics from intestinal diseases to colorectal surgical techniques, lined the wall behind his desk. While I was busy reading the titles of the books, the surgeon walked into the room.

So, you’re Tara. I’ve read all about you.

All good things I hope.

I solicited a small chuckle from the surgeon with that remark. Since this appointment was a surgical consultation to determine if I would be a good candidate for the ileal pouch-anal anastomosis, or J-pouch, surgeries, I knew my medical records contained anything but good things.

I was first diagnosed with ulcerative colitis (UC) during the summer of 2012 at the age of twenty-two. Before my first onset of symptoms, I thought of myself as invincible. I just graduated from college and was slated to start graduate school in the fall at the Massachusetts Institute of Technology (MIT). In order to live in the same town as my soon-to-be graduate school, I spent the summer working at a startup company in Boston. During the weeknights, I would head to a Taekwondo school, where I would competitively train in sparring with dreams of winning my first noncollegiate Taekwondo match. On the weekends, I would spend the mornings going on long runs. It was a great way to discover new parts of the city while enjoying the beautiful summer weather. During the evenings, I would enjoy attending social events with my friends. Life was perfect, and I thought nothing could possibly go wrong.

Then, one sunny July morning, I woke up to what I thought was a nasty bout of the stomach flu. At first, I had nothing but diarrhea, urgency, and a lack of appetite. By the third day, however, blood started appearing in my stool. I naively believed that over time the problem would clear up on its own, and as a result I continued to go about my life normally for a month. During that time, I grew increasingly more fatigued. At first, the fatigue was only noticeable after exercising. I found myself out of breath at points during a run or during a Taekwondo workout when I normally would not be. By the end of that one month, however, the fatigue became so crippling that I did not have the energy to get out of bed in the mornings. After being convinced by my friends and family that the problem would not go away on its own, I went to the emergency department of a local hospital and was immediately admitted as an inpatient. An emergency colonoscopy quickly revealed an inflamed and ulcerated colon, leaving the attending physician with little choice but to diagnose me with a chronic disease that I had never heard of before. Luckily, a three-day course of intravenous steroids and a few doses of mesalamine made me feel good as new, and I was able to return to my normal life with nothing more life altering than needing to take a few pills on a daily basis.

Because I had never heard of my new lifelong illness before being diagnosed, I wanted to educate myself with basic information about the disease, including information on how common the illness is, what causes it, and what the typical treatment plan is. After reading a few medical journal articles on the topic, I found out that UC, a subcategory of inflammatory bowel disease (IBD), is not an uncommon condition. It has an incidence rate of nine to twenty cases per 100,000 per year, and has two main onset peaks: one between the ages of fifteen and thirty years and a second between the ages of fifty and seventy years (Lynch & Hsu, 2020). While the specific cause of IBD is not known, it is thought to be autoimmune in nature, and there does appear to be a genetic component associated with it. According to an article published by the National Center for Biotechnology Information (NCBI), a patient who has a first degree relative to UC has a four times higher risk of developing the disease when compared to the control group (Lynch & Hsu, 2020).

While Crohn’s disease, the other subcategory of IBD, can affect any part of the gastrointestinal tract, UC usually only involves inflammation of the mucosa layer, or innermost lining, of the large intestines. Depending on the severity of the disease, this inflammation could only affect a small portion of the colon and only be limited to the rectum, or it could extend proximally up through the descending, transverse, and ascending colon and stop at the terminal ileum, or the connection between the small and large intestines (Lynch & Hsu, 2020). Symptoms of the disease greatly depend on its severity and location within the large intestines, but they may include diarrhea, abdominal pain and cramping, blood in stool, fatigue, and weight loss. In addition, extraintestinal symptoms, such as joint pain and eye inflammation, is also not uncommon (Head & Jurenka, 2003).

In terms of a typical treatment plan, at this point in time UC cannot be cured. However, it is possible to control the symptoms of the disease with medication. As a first line of response, physicians often prescribe corticosteroids in order to quickly induce disease remission in patients. However, due to both its short- and long-term side effects, physicians often try to taper patients off of corticosteroids quickly, and replace them with a longer-term medication, or combination of medications, with a lower side effect profile. (Meier & Sturm, 2011). Because each patient’s disease course is different, physicians often prescribe the different Food and Drug Administration (FDA) approved medications in a stepwise fashion. For mild to moderate disease activity, 5-aminosalicylic acid (5-ASA) is typically the first maintenance drug prescribed to patients. In the event that a patient does not respond to 5-ASA, or if disease activity worsens over time, physicians often move toward prescribing the second class of medications: immunomodulators (azathioprine or 6-mercaptopurine). In a similar fashion, if the immunomodulators prove ineffective over time, physicians will move on to the third class of medications: biologics (Meier & Sturm, 2011). Recently, several different classes of biologics have been FDA-approved for use in