Swati*, 45 from Nagpur has had to battle the odds ever since her idiopathic megacolon condition started troubling her. Her family came apart and her husband deserted her because of her condition. Yet she had the courage to fight for herself and her two sons.
Please tell us a bit about your condition - when were you diagnosed, the early symptoms? Is there a family history?
My Idiopathic megacolon condition was diagnosed in 2011. But the symptoms started showing in 2005 during my 2nd pregnancy. During my Caesarean section my large intestine had got larger, according to the doctor. I was advised to keep more fibre in my diet so that my intestine works properly. In 2008, I again started facing some problems. I had been suffering from constipation for a few days, as a result of which my abdomen got bloated. I was rushed to the hospital because the pain was unbearable. Even laxatives didn’t work. I was taken to the hospital and directly taken to the OT. My stomach was opened up and it was found that the colon had bloated. Post surgery, I was put on the colostomy bag for 15 days. As a result, there was some relief to the abdomen. My colostomy bag was removed thereafter. I had no problem in 2008 & 2009. In 2011 I started feeling the same problem, that is, constipation and stomach bloating. I was scared to have solid food. So for four months I was mainly on liquid diet because my son’s 10th board exams was coming up and I did not want any trouble. But after my son’s exams in 2011, we decided to go to the root cause of the recurring trouble and get rid of it. So I was admitted in Pune hospital under a surgeon.. After studying the details they said it’s idiopathic, which means without any reason my large intestine becomes lazy and does not do any movement. So its better to go for an ileostomy surgery. We eventually agreed to the surgery and my ileostomy bag was introduced..
How has the management of the condition(s) evolved over the years?
Earlier it was difficult to manage the bag, but I gradually got used to it. In the early days, my two sisters played a big role in helping me manage the bag and also my diet. I usually eat everything, but avoid too much of fibre food. I take out the seeds of the vegetables like bhindi or tomatoes. I take care of what I eat when I am going out.
Any tips that you would like to share
You have to understand your own body and what it can accept in terms of food or drinks. For instance, I have noticed this about myself, that whenever I have tea or coffee, I have to go to the toilet. So I avoid tea or coffee when I’m outside the house. But I have seen others with a similar condition not facing the same issue. So everyone’s body is different from the next person’s and one should be aware of that and eat and drink accordingly. But I would advise people suffering from a similar condition to avoid spicy food and junk food. Have fruits more. And it is good to have a protein diet.
What made you decide on a Stoma bag? Explain the decision process
I was tired of my symptoms recurring, and wanted to get rid of my large intestine and solve the problem once and for all. Hence the decision.
Please share some of your challenges – medical, physical, emotional, social. Include side effects of the various treatments.
After a medical procedure, we are usually weak. But this surgery affected me emotionally as well. It is not easy to accept the introduction of an unusual routine in our lives. And suddenly to find yourself with a bag which collects your excretions and you need to empty it out in the toilet was not easy for me to accept.
What has been the impact on life choices, on family dynamics, social choices
My family life was ruined after this surgery as my husband could not accept me with this bag. He had his own views about how his life partner should be. He left me and our sons. While I was still in the hospital undergoing the surgery, he sold his house and moved out of the city. I was shattered. But my mother and my sisters supported me very strongly and I was able to come of a toxic situation. I think God has given me a chance to survive, so why shouldn’t I seize the opportunity.
My strength were my two 2 kids. At the time of my surgery, my older one was 15 years old and the younger one was 7. Looking at them, I found my motivation to carry on.
Has it been difficult emotionally to cope with your condition? Did you see a counsellor to help cope with the emotional distress?
My sister is a psycho therapist in Pune and she has helped me in coping with my situation. She has a big role in helping me overcome all the emotional obstacles.
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?
Hardest: It is difficult to adjust to the bag in our lives initially. Gradually we get used to it and all the paraphernalia associated with it. Where to find bags, how to wear it, how to change etc. In my case, the doctors or the hospital did not help. They did not even explain to me how to go about it. Medicine shops helped. And since I am myself a homeopathic doctor, I knew people who could help and I also had some ideas of my own which helped me in the long run.
Advice to others: You should be very strong with a will power. Since you have been given a 2nd chance in life, welcome it and enjoy your life.
How has your family supported you? How did your friends treat you ? How does your diet change and lifestyle change impact your social engagements?
As I said earlier, my husband did not support. But my sisters helped me a lot. I don’t have many friends.
But society does not accept it. It is a big stigma. I have seen that if there is any problem with a woman, then a man, her partner, finds it difficult to accept. Not so with a woman. A woman usually adjusts to her husband’s problems. A woman’s in laws also find it difficult to accept. As far as other people in society are concerned, they can only shun and sympathise. They often treat you as a criminal too, as though you are to be blamed for what has happened to you. For us, our disability doesn’t show, because it is well covered. Yet we are at a disadvantage. Other people fail to understand this.
My two sons are doing well in their lives and their support means a lot to me.
How does your condition affect:
Attending social functions:
I go to social functions regularly. You can travel with your bag if you follow some rules. You should carry your kit with you always whenever you’re out.
Impact on your wardrobe
After surgery, you need to make some changes in your diet and your wardrobe. I used to wear sari and jeans earlier. But now I wear salwar kameez which I find more comfortable.
Learning to change the stoma bag or requiring help
I don’t need help to change my bag. I do it myself. Earlier it was a little difficult, but now there is no problem.
If you make your stoma bag your friend and not a stigma, then there is no problem. Life is beautiful.
Also, I am independent and self reliant.
Complete the sentence
My motto in life: Live for my children.
I was inspired by: My sisters.
* Name changed on request
As told to Moyna Sen
