Jameus’ colostomy bags cover his stomas and are there to collect the waste his body expels. A stoma, according to WebMD, is an opening that connects the colon to the surface of the abdomen. A lady who was in line behind the Fowlers thought the sight of Jameus’ colostomy bags was abhorrent, so she shrieked at Fowler and demanded to know why Jameus was disfigured. Fowler told the woman in brief of the colostomy bags that "his colon didn't finish forming so he needed them.” The other lady didn't care for Fowler's explanation, so the mom bid her farewell and went to another line to check out.
Upset about the woman’s lack of understanding, Fowler posted an account of her experience on Facebook. She said in the post that she decided to tell her story to the world because she wants people to be more tolerant of each other and their situations. She wrote, “Please be kind and choose your words wisely, especially should you choose to comment about something that is none of your business. Everyone is fighting a battle you know nothing about, and my son is winning his.”
Jameus has Hirschsprung's disease, a condition that causes problems with the large intestine, according to the Mayo Clinic. Because of his condition, he has had 20 surgeries, and he will have to have more. Fowler has set up a crowdfunding page to help defray the costs of the surgeries and treatments that Jameus has to have. If you’d like to help Jameus, visit his GoFundMepage.
Tonight, we were in Walmart standing in a long line waiting to check out. My sweet 2 year old wanted me to hold him. As I picked him up out of the cart, his shirt came up exposing his two stomas and bags on his stomach. Typically, I have a onesie underneath his shirt but tonight I just got him dressed quickly to run to the store. The onesie helps to keep his bags in one place and makes it harder for him to tug and pull them off.
There was an older woman in line behind me who caught a glimpse and shrieked a little before she said to me "why in the world would you let someone do that to him?"
I turned around speechless and just looked at her before she continued and asked why he had them. I gave her the short version and basically said "his colon didn't finish forming so he needed them." I left out that he had a rare disease called Hirschsprung's disease because I was a little annoyed from her first statement. She then goes "well I am sorry but I just think that is so 'repulsing', can you please keep his shirt down?" At this point I just wanted to shake this woman and scream "what is wrong with you?!" But instead, I told her to have a good night and went to another line.
So now I'm sharing this picture, because there is nothing repulsive about my son. Stomas and ostomies seem to be a taboo, when in reality, over 500,000 Americans have one. My sons disease may be rare, but his stomas are not.
So here's a little education for anyone who doesn't know about stomas and ostomies. An stoma is an surgically created opening that allows body to expel waste. Both of my sons are from his colon, but stomas can be from your ileum (small intestine), or bladder. Was this the first choice of a life I would have chosen for my son? Absolutely not. But this was his only shot at life. When he was 2 weeks old, his colon ruptured. It left him with a life threatening infection that nearly killed him. His stoma saved his life. There is a very good chance he will have these for the rest of his life and if he does, it will be my job to teach him a positive body image. (As its all parents jobs to do that). It will be my job to teach him to love himself, and his bags. Had he been a couple years older and been able to understand the ignorance the lady was spewing in line behind us, how much of a negative impact do you think that would have had on him?
See what that woman doesn't understand is, when my son is healthy, he is no different than any other 2 year old. He runs, plays, swims and goes to daycare. When he's healthy, you wouldn't be able to look at him and know he's had over 20 surgeries and procedures. You wouldn't know that he's got more ahead in his future. You wouldn't know he gets painful home dilation and irrigation treatments twice a day every day. You wouldn't know that every day a catheter is put into his stoma to "feed" it stool twice a day in the hopes of growing his colon. He's my heart. He is so funny, and full of personality. He is sweet and loving and kind but also a little ball of fire.
Please be kind and choose your words wisely, especially should you choose to comment about something that is none of your business. Everyone is fighting a battle you know nothing about, and my son is winning his.