(Image courtesy Google)
We celebrate so many special days throughout the year like Mother’s Day , Father’s Day, Earth Day, International Literacy Day, World Cancer Day, so on and so forth. It’s a noble idea to celebrate occasions or create awareness on important issues.
19 May is marked as World IBD Day. For the uninitiated, IBD stands for Inflammatory Bowel Disease and occurs as two serious chronic digestive diseases, Crohn’s Disease and Ulcerative Colitis. To keep it very simple and short, Ulcerative Colitis or UC is the disease of the colon or the large intestine whereas Crohn’s generally affects small and large intestine though it can occur anywhere in digestive tract from mouth to rectum.
There is no known cause for it (though genetic, environmental and some races are being pointed out), no cure at present (difficult to find solution when you don’t know the problem at hand) and most importantly very little public understanding and awareness of the pain and every day struggles in the lives of courageous IBD patients.
Unfortunately, I happen to be a one living with UC. This write-up is dedicated to millions of brave hearts world-wide who despite being pushed to the edge of the cliff, find courage, grit and determination to fly. There are many brave stories that inspire and make us proud. It’s my small attempt to get IBD patients out of the closet, throw some light on their lives and share my personal experiences.
- IBD patients are not contagious :- IBD is an auto-immune disease that is when the body’s defence mechanism,(WBC’s) start attacking the good bacteria in the colon mistaking them to be pathogens as a result of which the lining of the colon gets inflamed and starts bleeding.
IBD patients are not social outcasts. Their need for social intimacy and acceptance in their hard time is probably greater than others. IBD does not spread by sitting, talking or socializing with those who suffer from it. Instead families and friends can play an important role in reducing the stress around it by showing support and love.
- We don’t need sympathy but understanding :- No one has to be a biology wizard to understand IBD patients. Their struggles in coping up with every day of their lives and leading the lives as normal as possible is no mean task. The periods of remissions and relapses are erratic and fluctuating. The helplessness that comes from not knowing if you will be fine the next morning can be very emotionally and physically draining. The least IBD patients want in their environment is pity. Instead , show solidarity and applaud them as they take bold strides in living their dreams
- Do not remind them of their shortcomings :- Most IBD patients are advised to avoid spicy and dairy products though it is highly subjective. My aunt suffers from Crohn’s and maintains a fairly high lifestyle with no dietary restrictions. On the other hand I had to totally give up dairy, never eat out and on hard days have to push the limits even further. It is just so insensitive to continuously ask, prod and remind them. It was heart-breaking initially when I had to give up my favourite dishes, or was not able to be part of my children`s parties or family eat outs. Necessity is the mother of invention and we devised our own means to enjoy the precious moments of life.
- Being Human :- Between colonoscopy, biopsy, insufferable abdominal pains and unwarranted weight loss, there are bouts of anger, despair ,depression and stress. There is nothing anyone can do to cure IBD but families and dear ones can lend support, a listening ear, show compassion on rough days and shower them with a message that they mean a lot to them and are accepted as they are. It is equally tough for the families too to cope up as family schedules, outings and vacations have to be altered and custom made and what is more agonizing than seeing a loved one suffer helplessly.
- IBD is not same as IBS :- While the symptoms of inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) can be similar, both diseases are different. IBD is an autoimmune condition that causes inflammation of the GI tract and there is no known cure. IBS seems to result from digestive problems and increased gut sensitivity and is also a long term condition where symptoms come and go with periods of remission and relapses but unlike IBD it does not cause any damage or inflammation of the GI tract.
Next time when you come across someone from IBD community, reach out to them , encourage and motivate them. Remember the tenacity and braveness behind that smile and zest. Be a part of their daily schedules, involve yourself so that they feel loved and cared and most of all listen to them.
Don`t brand them as different ; we are as normal and full of life as others.
Remember, empathy, love support, respect and understanding can make IBD patients` journeys lively and easy.
Live and let live.