I was first diagnosed with Ulcerative Colitis in August of 2001. I remember I had gone to see the gastroenterologist with my mom when I first got the news. I sat there and a million thoughts raced through my head. How was I going to deal with this? What was my family going to do? How would my friends react? It is indescribable how it feels to find out that you’re sick and that its something you’re going to have to deal with for the rest of your life. My doctor told me that with medication I’d be able to lead a happy, normal life, but that hasn’t happened yet.
We went home and told my family and I remember both of my siblings breaking down and crying. My dad didn’t react much because he didn’t know how to, he was in shock. Most people don’t know how serious Ulcerative Colitis can be and how much it affects a family’s daily routine. It’s deceiving because from the outside we look normal but on the inside is another story. My family has had to deal with just as much as I have on an emotional level. They’ve tried to understand what I’m going through on a physical level but there is only so much they can comprehend.
At first it only affected us in small ways. My diet had to be changed so mom would cook separately for me. If we had family outings we had to make sure there were restrooms nearby. Even though the daily routine was interrupted it was something that we could all deal with. But then my symptoms started to get worse and my disease progressed very quickly. We had tried all medications that were available for Ulcerative Colitis and had no luck in alleviating my symptoms. I became ill to the point that I had to have my entire colon (large intestine) removed.
To this day I think about all the things I’ve missed out on because of my illness. In October of 2002, my little sister was getting married and I had just had a total colectomy. I weighed 75 pounds and couldn’t do much for myself physically. Being from India weddings are a huge celebration and preparations begin taking place months before the wedding. We had gone to the bed and breakfast where my sister was getting married and I remember her wanting me to see the room that she and her husband would be staying in. I couldn’t walk upstairs by myself so my brother-in-law picked me up and carried me up the stairs. My family did whatever they could to make me feel like I had been included. Two years later my sister gave birth to a son. I remember his first birthday. I was in the hospital again and she called me crying on the phone. She wanted so much for me to be there for his first birthday party and there was nothing I could do. We’ve all been most affected by the bigger and more important events that take place in ones life. So much has been taken away, not only from me, but from them as well. Other things I missed out on were small family activities and outings. I didn’t think much of it until I realized how important it was to my family that I be there with them. Even though these things may have been small they had largely affected us. They tried to look happy on the outside for my sake but on the inside they cried more often that I knew.
This example is an extreme since my case is unusual and has become very complicated. Not every family will have to deal with the things that my family did. But there will be times that you will feel overwhelmed and it will take a toll on your family. It is important to sit down together and discuss your disease and the affect its going to have on your daily routine. With a family that is supportive and understanding it shouldn’t be hard to come to an agreement about the adjustments that need to be made in order to facilitate your disease. Ulcerative Colitis should not be something that you allow to dictate your life. Be confident in knowing that if you learn about your disease and are positive and optimistic about it you can lead a normal life.
I think this has been the hardest for my mom. Being a female and at the age that I am, my father couldn’t do a whole lot to help out with my physical needs so my mom was left to take care of me. After having my colon removed I lost control of my bowel, suffered from incontinence and was back to wearing diapers. Although she did it with a smile on her face, she endured agony on the inside watching her grown child go through this humiliation. She would sleep with me in my bed so that she could take care of me throughout the night. This disease was now upsetting my parents’ relationship as a couple. They did their best to deal with what they could and no matter what happened they supported each other so that I wouldn’t have to suffer. More than anyone else parents sacrifice the most when there is a child in the family with Ulcerative Colitis.
My family and I have come to accept that this is something that is not going to go away. We all know that whether we all live in the same house or we live apart and may not see each other every day, it is something that we all have to deal with. Ulcerative Colitis can take a major emotional toll on a family if you let it. Its important that a family come together to understand what this disease is, how to deal with it on a physical level and learn how to cope with it on an emotional level. A lot of families are torn apart because they can’t deal with it emotionally. In my family I know that there have been days that I couldn’t deal with things and I lashed out at them when they hadn’t done anything wrong. I would lash out at my dad, he would get angry for my being disrespectful then my mom would get angry with him in defending me. It’s easy to become angry and take things out on each other when no one is really at fault.
I’ve joined a support group where I can talk to people that are going through the same things that my family and I are going through. By sharing the knowledge that I gain from these support groups with my family helps them to see that there are other people out there dealing with this disease and that there are positive and productive ways to lead a normal life. The support group is an online community where people with Ulcerative Colitis and other forms of Inflammatory Bowel Disease come together to discuss their daily lives and what they do to cope. This community can be found at www.ostomates.org. The Crohn’s and Colitis Foundation of America (CCFA) also offers a list of support groups throughout the nation.
Amber J. Tresca, “Gastroenterologist.” About.com
Carol Ashby, “What Is the Function of the Colon and What Does It Do To Keep You Healthy?” Colonhealth.net