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We were so grateful to be home with Faith. She was thriving with her ileostomy, but it was a brand new world for us both. My husband had never seen an ostomy before. I only had slightly more experience than him. I had a friend who had an ostomy after he was paralyzed from a gun shot wound. I watched my friend change his bag in the past, and helped him with it a few times when he wasn’t well. But that was it. Neither of us were prepared for the road ahead. It was rocky at first. It seemed like no matter what we tried, we couldn’t get the bag to stay on more than a few hours. We knew this wasn’t good. The constant changing of the bag was hard on her skin. Through trial and error, and the help of our ostomy nurse, Shannon, we finally got the hang of it. Now, almost two years later, Faith’s bag can stay up to five days!
Once we got used to it, I found the bag easy to handle. We got into a grove changing and emptying them. Often I felt that the bag was easier than having to change poopy diapers. Don’t mistake this! I would have much rather changed poopy diapers than my daughter’s illeostomy bag. Yet, it became simple.
Our lives revolved around poop (and still does). HD is very individualized. As I said before, what works for one, doesn’t work for another. To top it off Faith has TCHD. Which is a totally different animal than HD. People with HD that still have part of their colon often struggle with constipation. So the concern is often what foods or medicines will help relieve this. Yet TCHD people have lost their entire colon. Some, like Faith, have also lost part of their small intestines. In these instances, loose stool is the concern. The colon helps pull water out of our waste helping the stool to form. Without a colon, the stool is loose or mushy at best. We are excited if Faith’s poop is the consistency of mashed potatoes or oatmeal! Aaahhh! Those are great poop days!
We were told to try adding Benefiber or Metamucil to her diet to thicken her stool. Well, Benefiber has the exact opposite effect on her. And she hated the taste of the Metamucil. When I finally found a way to get her to take it worked some. But, it substantially decreased her appetite. So, that was a no too. We then tried Imodium. It seemed to slow her poop down. Faith almost always poops. There is always poop in her bag. The Imodium slowed her down, which in turn thickened her poop a little.
The other thing we tried was pectin. The kind you get at the store was awful. It was difficult to mix on her formula. It would climb up. I read that you need to mix it with a little water and heat it up on the stove first to help it dissolve. The it co of be mixed into formula. Now, kudos to jr parents that are able to do this. But it was just too much for me. The. I heard of Pacific Pectin brand. Now this is an awesome product! It mixed right in her formula with no taste. It works wonders in thickening and slowing her stool. Between the Imodium and the pectin our little sweetie has had plenty of mashed potato poops that we have applauded! Who knew I’d become so obsessed with someone else’s poop💩!