One of my bestie’s, a beauty blogger, said to me that writing is cathartic, it gives a sense of relief, and i completely agree with her! Usually I try to keep my cool at all times especially in front of people but lately maybe due to stress and negativity people try to create, I’d become edgy. This thing bugs me because that’s so not me! Writing saved me! I finally found a place to unwind, to be me and it feels great! Ever since my daughter came into this world I wanted to document each and everything about her but never got around to doing it. The web is a great place since it connects people with similar likes and also provides a host of info. After reading stories of many affected parents around the globe, I reached the same conclusion as other parents had reached already : To make a difference and raise awareness ‘I’ had to do something and hence, this blog came into effect!
Seeing my daughter whining with pain was a very heart wrenching sight. Yusra is tough and brave but the first night after surgery even in the presence of painkillers was painful for my eight months old baby. When the surgeon had briefed us about HD it was just a new piece of info, however, when she was moved to ‘step down’ (a room equipped with various machines to keep a check on seriously ill patients) that was the first time I was introduced to that soft mouth of the functional intestine which was sticking out of Yusra’s tummy. That was the first time I had heard the word ‘Ileostomy’!
What is an ileostomy? As mentioned above, it is a functional portion of ileum (small intestine) which is severed from the non-functional portion and through surgery is joined to the abdominal wall in such a way that its mouth sticks out of the tummy and a stool collection bag is attached to it to collect ever oozing stool. Not normal eh? But its a life support and a very important one!! If only a portion of colon (large intestine) is involved then its called a colostomy. Now you would ask what becomes of the other bad portion of the gut. Well its mouth is also attached on another part of the tummy and it’s called ‘mucous fistula’. For some months the mucous fistula oozes out whitish mucous and then seals for good.
Surgery to treat HD is a multiple step process. At first a reversible ostomy (ileostomy or colostomy) is created. Then we wait for the gut to get stable and for the child to gain required weight for the next more complicated surgery. Next comes the reversal or pull-through surgery which is more complex and involves closing the temporary ostomy and joining it directly to the anus. Although parents like to think or are made to believe that pull-through surgery is the ultimate most normal solution but the reality is quite different. I’m not going to go in that detail now because for one I’ve not yet experienced life after pull-through so I can’t comment on it and for the other, the experience of every HD parent is different.
So ileostomy was it! The temporary solution to my daughter’s problem. We were told that in six months time or when my baby reaches 10kgs weight, her pull-through surgery would be performed. Until then here’s what I was taught on ileostomy management by the most reputable hospital in town. Since in the small intestine the food is in it’s early stages of digestion, it’s pretty much in the same consistency and shape as it’s original form, i.e., if Yusra took milk, the output was watery, if she took semi-solids then the output was a bit thick and so on. Solids could mean constipation and in the early days post-op when the gut was tender and getting accustomed to this new normal, i had to stick to semi-solids. I was told to keep a gauze pad directly on the stoma (the mouth of the gut sticking out) which would absorb stool and change it at the first sign of spotting. Meanwhile, I was told to keep the area around the stoma covered with zinc oxide or any other bottom rash cream so as to avoid rash formation. For seven days after the surgery I did my job quite efficiently and the surgeon was very happy to see that this gauze pad method was working. Slowly and gradually rashes started to break out. Just as Yusra had no control over her stool, things started slipping out of my hands too. I’m was as vigilant as I possibly could be but I’m only human who also needs to eat sleep and pee n poo. It was in those times that the very acidic stool would get past the thick lining of the rash creams and spoiled her skin. I wish i’d become an insomniac so that I could keep a check on my daughter at all times. Those two months were the hardest and most painful for Yusra, Alan and me. I was by her side all the times, her clothes would get spoiled all the time because of that gauze pad, and we hardly went out. Every time we took Yusra to her surgeon for the ever growing wound that was forming around her stoma and eating away her good skin, her surgeon would tell us its no big deal that her body would get accustomed to this pain. BULL SHIT!! Another bad advice by AKUH Head surgeon cost my daughter all the more pain. Never did he once mention that there are ostomy bags in the market which are stuck around the stoma to collect stool! If I was a parent living in States I would for sure have sued him.
I’m not done with this issue yet. My kids are up from there afternoon nap so better get going before they drive me crazy !!
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