Madhura Balasubramaniam, 25 from Chennai tried everything to manage Crohn’s disease, getting past the grossness of it. She considers the PEG tube as the best gift she has received and takes life one day at a time.
I am Madhura, a 25-year-old from India. I have a Master's degree in Development Studies and I am an independent researcher learning more about the Tibetan exile community in India and studying refugee rehabilitation.
Please tell us a bit about your condition - when were you diagnosed, the early symptoms? Is there a family history?
I was diagnosed with Crohn’s disease in 2019. Crohn’s disease belongs to a class of autoimmune conditions called Inflammatory Bowel Disease (IBD). IBD is a chronic condition that causes chronic inflammation of the gastrointestinal tract. The cause of IBD is not completely known and IBD cannot be cured. Patients go into periods of flares and remission. Crohn’s disease and Ulcerative Colitis are two of the most common types of IBD. IBD is a hard disease to manage and it can be severely limiting at times. More about IBD here: crohnscolitisfoundation.org
I have a history of bowel issues since my childhood and I’ve suffered from constant diarrhea, vomiting, stomach pain, skin rashes and did not meet my weight or height targets. At 10, after a battery of tests, I underwent my first endoscopy and the doctors found duodenal scalloping. Though my biopsies were inconclusive for celiac disease, I was instructed to remain gluten free. Being gluten free brought my bowel symptoms under control and I have been on a strict diet for the last 15 years. Towards the end of 2018 and the beginning of 2019, I found a relapse of symptoms – particularly diarrhea and stomach pain. I initially assumed that I’d accidentally consumed some gluten or that I had contracted stomach infections since I was traveling quite frequently. However, over a period of a few months, the symptoms kept getting worse despite my best efforts to be careful about my food. I also had many narrow misses with faecal incontinence, lost weight quite quickly and experienced a lot of fatigue.
At this point I met a gastroenterologist and I was diagnosed within a period of 6 weeks. This was much faster than many people in the country where low awareness among patients and endemic TB (intestinal TB can mimic symptoms of Crohn’s) make diagnosis challenging. In my view, the gastroenterologist I met had a high index of suspicion which is crucial in an IBD diagnosis. When I got worse on the antibiotics he’d initially prescribed, he immediately ran a wide battery of blood and stool tests to check for among other things Ulcerative Colitis, Crohn’s and celiac disease. I underwent an endoscopy and colonoscopy and was given a diagnosis. Additionally, I underwent imaging tests and a capsule endoscopy to determine the extent of my disease.
I don’t have a family history of IBD to the best of my knowledge.
How has the management of your condition evolved time?
The management of my Crohn’s has multiple aspects to it. I believe finding a doctor you trust completely and you are 100% comfortable with is key to managing this disease. It took me sometime and I am very glad to be able to have found a doctor who is concerned with improving my quality of life and encourages and supports me to learn more about my condition so I can be a more informed patient.
Secondly, the goal of medical management is to find medication that will put the disease into remission. Though I was diagnosed very early, the medical management of my disease has been trickier. I was initially started on 5 aminosalicylates (5 ASAs), mild anti-inflammatory drugs, but they were not effective in controlling my inflammation. I took steroids in varying doses and different formulations for almost a year. I also tried and failed an immunomodulator, Azathioprine and I have recently been moved to weekly injections of an immunomodulator called Methotrexate. I am still not in remission and hoping that Methotrexate will be the drug that helps me.
In addition to medication, making dietary changes is very important. IBD is a very individual disease and it is critical for each person to understand their food triggers and eliminate them accordingly. I was already gluten free and had drastically reduced my dairy consumption at the time of my diagnosis. Based on my doctor’s advice, I also eliminated nuts, corn, dals and eggs from my diet as I was showing some degrees of intolerance to these foods. At this time, I started and continue to maintain food diary and this has, over time, helped me identify and eliminate trigger foods. Since last September, I am on partial enteral nutrition (PEN) delivered through a PEG feeding tube.
Why the PEG tube?
I was given the option of getting a PEG tube at a very difficult phase of my Crohn’s journey. My inflammation was persistent despite being on the highest permissible dose of Budesonide, a steroid. I was down to 34 kgs and was unable to eat without being in severe pain and was experiencing multiple episodes of diarrhea and vomiting every day. This made it very difficult for me to get out of bed and I struggled to do even basic everyday tasks without help.
In addition to my intestinal symptoms not abating, I developed a extra-intestinal skin manifestation from my Crohn’s called pyoderma gangrenosum, a condition where the skin develops painful nodes that become open ulcers. Given all of this, my doctor decided to escalate my therapy and wanted me to get some live vaccinations done before starting immunomodulators and eventually biologics. However, I had to wait for 8 weeks before I could be cleared to begin the new therapy. The PEG tube was recommended to help me control the weight loss, gain weight and to reduce the inflammation while I waited for my clearance. My doctor described enteral nutrition through tube feeding as having a similar healing effect as steroids but without the nasty side effects. I had also read earlier that enteral nutrition had been successful in inducing and maintaining remission in children with Crohn’s disease.
I agreed almost immediately and it has been the best medical decision that I have made. Within three weeks, I stopped having regular episodes of diarrhea and vomiting and my weight started to stabilise. My inflammation markers fell dramatically within a few months and I was able to come off steroids for the first time since my Crohn’s journey began. I regained a lot of independence. I was also able to take care of my daily tasks without help and also start working on my research again. Most importantly, I was able to get nourishment without being in terrible pain and that was a real blessing for me. I continue to be tube fed and I am now out of dangerously low weight levels.
Challenges – medical, physical, emotional, social
My journey with Crohn’s so far has definitely been quite a challenge. Physically, the disease really has taken a toll on my body. The constant inflammation in my GI tract means that I struggle to digest food, must stick to an extremely restricted diet and deal with nutritional deficiencies. The diarrhea, vomiting and weight loss is very tough on the body. Many people think Crohn’s is like having food poisoning or a stomach ulcer. But this is not the case. Imagine having to be in the restroom multiple times every single day and planning your day around this, fearing leaving the house because we don’t have clean and accessible public washrooms, carrying a spare set of underclothes, a change of clothes, wipes and diapers whenever you absolutely have to leave the house, not being able to keep down foods that even babies can handle and not seeing an end to this for months on end.
Thrown into this mix is the experience of chronic pain. Through my Crohn’s journey, pain has been a constant companion. There were many days where I have been unable to stand straight and I have just laid down in bed, alternately sweating and shivering, being unable to sleep and unable to move. Even today, I do deal with some amount of pain though my quality of life has improved tremendously on the PEG tube. In addition to the intestinal symptoms, Crohn’s takes a toll on the whole body. I experienced a lot of fatigue to the point where I was extraordinarily tired even after sleeping for 10 hours at night and taking a nap in the afternoon. I also experienced significant brain fog. I was not able to even write a few sentences. While these symptoms are improving now, they were terribly limiting. These physical limitations have also taken an emotional toll on me.
I have had challenges with the medical management of Crohn’s. I experienced a number of side effects from steroids and the side effect that was hardest to manage was nocturia (frequent night time urination) since it disturbed my sleep and made my fatigue worse. Over the last year, I also developed allergies to multiple medications including anti-emetics, antibiotics and even some antihistamines. The most difficult experience I have had was with Azathioprine, an immunomodulator. I developed very itchy rashes and hives all over my body, severe nausea and episodes of diarrhea when I was on the medication. My brain fog also got substantially worse in this period. Once my doctor confirmed the allergy, I was taken off the medication and was put on Methotrexate. So far, the side effects have been very minimal.
Impact on life choices, on family dynamics, social choices
Crohn’s is definitely having a big impact on my life. I am rethinking my future plans since my disease makes it very hard for me to pursue my plans of doing a PhD in anthropology. I have also been unable to work on my research in a sustained manner through the last year. I am now grappling between the expectations I have of myself in my career as an academic and the reality of managing a difficult disease that has proven hard to manage. But I do believe Crohn’s has helped me build a kind of resilience that I would not have developed otherwise. I think this strength stands me in good stead to manage whatever challenges are thrown my way.
With regards to family dynamics, we are all in a survival mode and we will have a lot to process once I ride out the storm of this first flare.
In terms of social choices, the only conscious choice I have made is to talk more about my experience with Crohn’s and with my feeding tube especially. I found that a lot of people, even in the hospitals, were treating my feeding tube with a lot of pity. They viewed the tube as a last resort intervention that only bed-ridden or terminally ill patients are given and as something that cannot be managed without round-the-clock nurses/caregivers. I found that extremely troubling and I wanted to share how my tube had vastly improved my quality of life and gave me so much freedom and independence. I began sharing photos of myself and my feeding tube on my Instagram page and I do hope to be able to talk about this more.
Getting past the “gross” factor
As a very squeamish person, Crohn’s is teaching me to embrace what I consider “gross”! I very quickly got over my discomfort with discussing bowel movements and vomiting. Maintaining a poop diary is a very important way for me and my doctors to understand my response to drugs and it also gives us early warning signs of worsening symptoms. Doing this as a daily activity helped me tremendously in getting over my discomfort. Pyoderma gangrenosum, managing my feeding tube which regurgitates the stomach contents on me from time to time and the granulation tissue around the stoma have been a bit harder for me. What really helped me was my mother’s sense of humour about all of this. We cracked a lot of jokes about each of these issues and that helped me cope much better. We’ve ended up naming my tube G. Spewak after the philosopher Gayatri Spivak because my tube is just as prolific in its output as Spivak is! I also have learnt my limits and when the PG or the granulation tissue is flaring, I ask for help with dressing changes, applying barrier creams and ointments to reduce the granulation.
Has it been difficult emotionally to cope with your condition? Did you see a counsellor to help cope with the emotional distress?
Yes, it has taken an emotional toll on me to cope with my condition and its impact on so many aspects of my life. I do hope to see a counsellor soon so I can work through some of these challenges.
What does a typical day look like?
I have a strict schedule based on my medicines and feeding cycles. This is what it looks like
7.30 am: Medicine
8.30 am: Medicine
9.30 am: Breakfast + medicine
11 – 12.30 pm: First feed
1.30pm: Lunch
3.00-4.30 pm: Second feed
5.30 pm: Medicine
7pm: Dinner
8.30 pm: Medicine + third feed
Within this framework, I do my everyday tasks, go on a walk and do some work/read if I am feeling well.
What is the hardest part of living with the condition? What were some of the challenges you faced and what is your advice to patients who face similar challenges?
For me, the hardest part of this condition was understanding its chronic nature. As a person in her 20s, I was always used to my body bouncing back from illness. Even with going gluten free as a child, I saw results quite soon. It has been a very difficult experience to see my symptoms persist despite all of our best efforts and to accept that this is chronic. I wouldn’t say I have fully gotten over this and there are days when I feel very low thinking about how my life was before the diagnosis and about the things that I can no longer do.
I don’t really have advice but on these low days, I remind myself of something my mother said: “There is no going back to the way things were. We only move forward”. It reminds me to think of the future rather than wallow in the past and take each day as it comes.
Have you learnt anything in managing in your condition that you wish you knew before?
I wish I had understood what it means to live with a chronic illness that flares and ebbs. While I knew the facts, it didn’t really register till six months after my diagnosis. I was sure that if I made the requisite dietary changes, lifestyle changes and took my medicines on time, I would be in remission. It really affected me deeply when I was not in remission even after a year of treatment. I now try to not think too much about the future and take one step at a time and focus on the task at hand.
How has your family supported you? How did your friends treat you? How does your diet change and lifestyle change impact your social engagements?
I have had an incredibly supportive family. My mother has been my pillar of support, has advocated for me and has stood by me and all my decisions. My grandmother and grandaunt have also been very supportive. My uncle, who is a GI and metabolic surgeon, has been very critical in my care and I am really grateful he took my concerns seriously and made sure I got the best care possible. I have a wonderful mentor and a best friend who is like family and both of them have really helped me to cope with Crohn’s. I am also really thrilled to have made new friends, through patient support groups, who also live with Crohn’s disease, really understand the everyday challenges that the condition poses and create an empathetic and safe space for me.
The better part of my Crohn’s journey coincided with the Covid19 pandemic and I have been maintaining strict physical distancing. I think I will have a better sense of how my social engagements change once the pandemic-related restrictions ease up. I don’t think anything will change dramatically though.
My motto in life: One day at a time
I was inspired by: my fellow IBD patients who manage and live with this disease with a lot of grace and dignity
The strangest comment/reaction I received: There are a number of these. The most recent one was a relative telling me “oh you studied too much/too hard. That’s why you have Crohn’s now”.
The funniest moment was: I woke up from the PEG procedure to see a long tube that was taped around my stomach and declared I needed a plumber not GI doctors. We all had a good laugh!
The most annoying moment: is when people blame me and say my actions and choices caused my disease. I refuse to accept this.
The best thing someone said: I have your back and we’ll get through this together
I love: learning more about the latest research on IBD that is being conducted around the world
I hate: the stigma around IBD and life-saving interventions like feeding tubes and ostomies
I fear: that my flare might get worse and I might fail treatment options currently available in India
My biggest support: My mother
The best gift I got: Spewak, the PEG tube
I wish: There is greater awareness about IBD in India and concerted efforts towards making treatment accessible to all patients.
