That upcoming appointment has me thinking about a few things, as always. On some level, I've been thinking about how Tatiana being able to poo is still as amazing as the first time - and believe me, the stench is equally amazing, although extremely unpleasant! I've also been thinking about how certain topics, especially surrounding our health and medical issues, are often kept tucked away, hidden, and silenced to a degree.
That has me thinking back to why I made the decision to put our story out there: I wanted to share our story to inform our family, friends, and supporters of Tatiana's condition and progress, while reaching out to others who could benefit from our story in so many ways. I remember my sister asking me if I planned on filtering what I was willing to share, if it was okay to tell others about our story, and if she could share with them where to read more. I was thankful that she had the courage to ask what so many others were thinking. I decided early on to be as transparent as possible about my feelings, Tatiana's conditions, and the journey that has been quite a ride - emotionally, spiritually, and physically. I stand by that decision, but I do wonder if there will be repercussions of exposing pieces of myself, and of my family, through such an open and public domain. It’s a risk I’m willing to take.
If you haven’t been following us from the start, allow me to fill in the gap: Tatiana didn’t quite have an opening for her poop to leave her body, so one had to be surgically created for her. From what I understand, she had the right piping, but no exit. Sounds like a joke, I know, but it really did happen – and apparently, it happens in 1 of every 5,000 births. The fancy terminology is “imperforate anus.” Well, she had her surgery to open up her bottom sometime in August of ’09 and her colostomy (an opening created on her left side to let the poop out) was closed up in January of ’10 (during this surgery her intestines were reconnected to allow the poop to travel to her fully functioning bottom). It was a great feeling when she was finally able to poo into a diaper, but then came the aftermath.
Her body had to learn how to adjust to these “normal” bodily functions. I remember she had such a hard time, and she would get these terrible rashes. She would wring her little hands in pain from the effort of trying to push waste out from her body. I felt like we tried every diaper rash ointment and home remedy you can imagine: Triple Paste Medicated Ointment, Boudreaux's Butt Paste, Aquaphor Baby Healing Ointment, Vaseline, Balmex, Desitin, Burt's Bees, Aveeno Diaper Rash Cream, A+D, Mustela Stelactiv, ConvaTec Aloe Vesta, Critic Aid, Ilex Paste, and several combinations thereof, as recommended by the docs of course (including a combo of equal parts gyne-lotrimin, zinc oxide rash ointment and an antacid, like Mylanta); arnica, chamomile, aloe vera, and cornmeal/corn starch . . . that’s a pretty desperate list. The rash would just fade a little and come back full force.
I felt so bad for her, and at times I caught myself wondering if we would have been better off leaving the colostomy intact.
It turns out that aside from the skin on her bottom having to adapt to her new “abilities,” her poop was impacted, or built-up creating a blockage. This blockage was creating some issues for the on-going poop that she was trying to push out, and it basically had to make its way around the blockage. I guess that would explain the sticky, tar-like consistency and the horrible stench of her bowel movements! Her skin was adapting, but it was also being severely irritated by the residue of the old poo. Go figure.
Her surgeon recommended we try a pediatric enema – fun times. As unpleasant as that experience was, it cleaned her right out and within a day or so, the rash started to go away. If you don’t know what an enema is, it’s basically “the injection of liquid into the rectum through the anus to [cleanse and stimulate] evacuation of the bowels.”
But, it worked wonders. She was doing so much better after that . . . and then, a week went by, and we were back to square one. Oh, the uncanny frustration!
I think we were both wringing our hands at that point. We talked to the surgeon and he recommended we try giving Tatiana MiraLax, a polyethylene glycol 3350 powder, which “draws water back to your colon, replacing what was lost, and allows you to have a normal, easy and complete bowel movement. As it works, it provides more comfort and less straining without uncomfortable side effects.” As your poo makes its way out of your body, moisture is drawn out from it. In Tatiana’s case, the longer the backed up poo stayed stuck in there, the more moisture would get drawn out from it, and the harder it would be to get it out. Kind of like a violent cycle.
The MiraLax worked like a charm, for the most part.
We still have some moments, like discovering there was a recent recall on MiraLax. I checked, we’re fine.
Or, like this past week. Tatiana is having a hard time pooping again. I’m sure we’ll address it at her upcoming appointment. For now, I’ll just have to adjust her MiraLax dose to help her body adapt and get through it.
Adapting . . . and getting through it . . . sounds like so many other aspects of this experience. It certainly has been a journey with so many lessons in flexibility and no shortage of surprising twists along the way, but at the end of the day, there is always a silver lining: we get to experience the joy of Tatiana in our lives.