Can you introduce yourself? 

Hi NPF Family! I’m Shruthi Shankar and I’ve stepped into my 35th this year. My hometown is Bengaluru, in India, and I spend a good chunk of my time in Bengaluru and partially, in Dubai. I have also lived in the UK and UAE for a few years. My education, passion and professional experience have been in the food and beverage sector. I freelance as a consultant in that sphere when my health permits; write content, cohost an environmental awareness oriented podcast and curate family recipes on my Facebook page, when time permits.

How old were you when you first had a pancreatitis attack?

I experienced my first pancreatitis symptoms when I was 27. With the exception of severe and radiating pain in my upper and general abdomen region, I did not exhibit any other clinical symptoms. My only observation at the time was that antacids had no effect and pain killers would only work for a few hours and they could never really address the pain completely.

Did doctors know it was pancreatitis right away? If not, what did they think it was?

Pancreatitis was never really suspected at this juncture. In 2013, after a battery of tests, except for high WBC and ESR counts, all other parameters appeared normal. Blood tests, endoscopy, colonoscopy and ultrasound scans revealed nothing significant. Every diagnostic test performed ruled out suspected cardiac concerns, severe gastritis, ulcers, diverticulitis, etc.

The painful flare-ups visited me every few months and every blood test revealed high WBC. So I was treated with antibiotics, painkillers and with adequate rest, it would subside after a few days. I was hospitalised twice for severe pain that could not be controlled with oral painkillers by this time.

In 2014, during another ‘pain attack’ more investigations were conducted and by the process of elimination, the cardiologist my family doctor (general and colorectal surgeon) referred me to, passed my file to the gastroenterologist. I developed nausea, vomiting and lack of appetite as added symptoms during this particular ‘pain attack’. The MRI and CT scan results said that my pancreas was visibly inflamed and there was also calcification. I was finally given the diagnosis of pancreatitis although my amylase and lipase levels weren’t excessively elevated.

After a subsequent MRCP, he told me that the cause was Pancreatic Divisum. I was advised to go on low fat and low protein diet. A stent was suggested if it kept recurring.

How did you find a specialist that diagnosed you correctly and have you done genetic testing?

Since the attacks kept recurring, my family doctor advised visiting the Asian Institute of Gastroenterology (AIG) in Hyderabad, India, a specialist centre with field experts, before considering stents. The pain and the duration of the attacks kept increasing with each ‘episode’. The clinical Pancreatologist at AIG ruled out Divisum based on endoscopic ultrasound images and put me on specialised antioxidants and digestive enzyme supplements.

I have not undergone genetic testing. The Pancreatologist told me that no matter the result of the genetic testing, the treatment would remain the same. He also mentioned that in the Indian population, there is no established hereditary influence and that it could just be based on my genetic makeup, without being hereditary. I decided not to do the test as it was expensive and would not make a difference to my treatment modality.

After further tests, the pancreatitis was categorised as Idiopathic and as being recurrent acute. I was informed that there is no cure for this particular condition based on the cause.

What was your life like before and what is your life like now?

I was a happy-go-lucky 27-year old when I had my first encounter with pancreatitis. Since then, I’ve visited numerous doctors, specialists and hospitals. I’ve been hospitalised multiple times (over half a dozen times and ranging from 4 days to more than a week).

Pancreatitis took away my ability to have a full-fledged professional career and a life with some sort of predictability. It took away every semblance of control a normal human being has in their life choices, including something as simple as planning a vacation without being afraid as to what might go wrong. A little 6-inch organ that I did not know very much about, took centre stage and demanded every bit of attention I could provide.

What I experience whenever I have an ‘attack’ because of pancreatitis includes-unbearable and debilitating pain in the abdomen area and the back, constant nausea even on an empty stomach, vomiting, zero appetite and high infection levels within the body. I’ve had over 18 severe attacks like this in the last 7 years. Some were months apart, some of which were weeks apart and some chronic pain episodes stayed on for more than 10 months at a time. I’ve had pseudocysts, pancreatic stones and a chunk of my pancreas has now atrophied. In addition to the attacks, owing to the organ progressively degenerating because of the disease, I deal with insulin-dependent diabetes (2015 onwards) and rely on oral digestive tablets whenever I eat or drink.

I’ve been pricked and prodded for diagnostic and follow up tests so many times that I have lost count of the bruises and bandaids I’ve had over the years. My body’s day to day functioning is now heavily dependent on medicines. I have to deal with repeated fungal infections whenever I consume antibiotics or with diabetes mismanagement. I have contracted colitis and herpes (near my eye) owing to hospitalisations/procedures and compromised immunity. It can be complications galore even when I’m trying to look after myself in the best way possible.

This disease requires me to keenly observe possible triggers every day and be ready for a health crisis at any given time.

What have you found works for you? What has helped you the most in managing this disease?

I’ve researched, studied, understood and experienced the benefits and limitations of Allopathic, Ayurvedic and other alternative forms of medicine applicable to this disease. I’ve experimented with different diets and lifestyle habits to complement medical therapies. I’ve educated myself wherever I needed to and sought help from medical experts and therapists to help me manage this debilitating disease that eats away any quality of life I can have.

Awareness of the organ and its function within the body and the impact our daily lifestyle habits and the foods we eat can have on the disease is key, in my opinion. It has been my saviour thus far.

Any illness will take a toll on you mentally and physically. For patients that are living with a rare disease, what piece(s) of advice would you tell them to help them get through this?

  • Pay attention to signs your body gives you when it is struggling. Take a pause, give it the rest and recuperation it needs and look after this beautiful machinery you get to live in.
  • Educate yourself on what is good for your body and what isn’t. Cut them out of your life if it isn’t serving you positively.
  • Seek competent medical help when you need to and follow through on advice that helps you recover.
  • Invest in good medical insurance. I know this would mean different things in different countries but the intention is to ensure that your medical care doesn’t suffer based on your financial ability. Diagnostic tests, hospital visits, medicines and hospitalisations can cut very deep into our pockets. Ensure that you are covered in the best possible way for all of this. It is the best investment you can make. Also, if you’ve already been diagnosed, ensure that the insurance covers pre-existing conditions.
  • Carry any daily and emergency medicines in a pouch whenever you travel. Keep them with you at all times. A few extra grams of luggage can save the day if and when you need them.
  • Keep a medical file/journal with all your test reports and discharge summaries. Keep them organised by month/year. When you visit doctors/hospitals, this can be a great aid especially if you are distressed.
  • Meditation can be an amazing tool in helping us recover and heal. Take advantage of it.

For you personally, what has helped you the most during this ordeal? Do your friends and family members understand what pancreatitis is?

Undoubtedly, my family. Without my mother and her dedication, I would not be alive today. Having a support system is key for survival. Having open conversations about my needs, about the nature of the disease and being mindful towards the impact it can have on us and our loved ones are essential in effectively managing this condition. If I didn’t let my family or friends in, the isolation could have been catastrophic. Nobody knew about the condition and asking them to google only makes things worse. They understand the organ and the disease after our numerous conversations and discussions and the conversations keep evolving.

Even though you have pancreatitis, how are you not letting it control your life and goals?

All of my life goals took a serious hit owing to the unpredictable nature of the disease. I’ve had to reassess my professional strengths, skills and build capacity to work in a sphere that doesn’t require a 9 to 5 office set up. I pursue activities that calm me and bring positivity into my life and I do my best to be prepared and organised in all my endeavours. Finding my life’s purpose has been less confusing owing to this life experience so, I and committed to making the best out of a bad situation. Although having pancreatitis increases my risk of developing pancreatic cancer, with the help of my support system and some courage, I’ve committed to looking after my body, mind and soul in the best way possible.