Knock on wood, she hasn’t been sick sick sick, as far as her UTIs or anything like that – but now she’s having trouble with her bowel. We try to follow advice from the different people and it’s just not working. And she’s sixteen! I can’t be saying, “All right, you should be taking this Metamucil, you should be doing this, and yada yada yada,” because she’s not. And the only other option is the operation.
Mother of Elizabeth, age 16
This doesn’t seem right
He’s had constipation problems all his life. I always knew something was wrong, and at first my primary doctor was like, “More prune juice, more prune juice,” and I’m like, “Well, this doesn’t seem right.” So we went to a GI specialist up here, and they put him on Prevacid (Lansoprazole) and Pepcid (Famotidine), the reflux drugs, and MiraLax (Polyethylene Glycol-Electrolyte Solution). The doctor just thought Patrick was withholding for about two years, and he just kept getting backed up – like, we’d go in for an X-ray and he’d be all packed full. So we actually said, “That’s it, we’re going to go to Children’s.” It took us awhile to get into Children’s, and then insurance didn’t approve the colonoscopy, which was what he needed. We found out he was backed up in the month of December-January, and then we didn’t get into Children’s until July, so that was frustrating. But anyways, it turned out after all the tests that they did that his colon was not working at all, and they weren’t expecting that either. So they decided to do the ileostomy. That was the only option.
Mother of Patrick, age 2
There are some things suggested that she just won’t do
Before she had the blockage operated on, she’d get constipated a lot. Now she doesn’t get constipated per se – it’s gotten too loose. With everybody else, you eat, then there’s a waiting period, but a lot of time with her it’s just, whoosh! And it’s just her anatomy is really, really different.
Of course, I’m thinking, “Don’t drink the dairy, don’t do this, because that’s making it worse!” It’s just common sense – people with irritable bowel syndrome can’t do that. So I always think of that, but her dad keeps saying, “It’s her anatomy; she can’t control it.” We went to the test: her sphincter is not like ours, it’s not as strong. I forget what percentage it is, but she can’t hold it as long. She cannot hold it. And again the GI doctor suggested exercises or something, and she wouldn’t: “No, I’m not, no, no.” If it involves sticking things in your anus, then no. So there are things that are suggested that she just won’t do.
Mother of Elizabeth, age 16
The biggest challenge is the ileostomy
Right now the biggest challenge is the ileostomy. We had a lot of problems with it when we first came home. We finally met with the skin care specialist, who we didn’t get to ever see at the hospital, but she’s the only one that we felt like, “Okay, she knows what’s going on here.” I guess that the pouch that they had sent us home with was for a baby, but Patrick has such a high output that it kept leaking and coming off. So the first few days, we were constantly changing the bag every few hours and that was just really, really stressful. But once we finally went in to see her, she told us, “You know, you need an adult-sized pouch for him because of his high output, and try these Eakin rings, and try this and that,” and that was so helpful. And she told us how to take care of any rash that he got around his stoma. So things aren’t too bad now, because we’ve got everything under control. He goes back to get tested for his colon again in July…hopefully it will work and we can reconnect everything, but we’re just kind of taking it day by day now. Right now he knows he has to have the pouch to make his belly feel better, and I think he thinks everyone has one.
Mother of Patrick, age 2
He’s okay with where he’s at
At one point they talked to him about trying to reverse the ileostomy and he looked at me and said, “Why? I remember the pain. I’m not going back!” So to him this is normal. This is just part of a normal life. And he said, “So people do it the other way – I don’t!” and that’s just fine. So he’s okay with where he’s at right now.
Mother of Robert, age 16
She was for seven years on laxatives everyday, and then they push it to a point where she was having diarrhea like everyday, and it didn’t change anything urologically…she’s been to the gastroenterologist – three gastroenterologists, to tell you the truth. That’s what they told me, to try to put her back on all those laxatives, because for them, it’s not the problem. But when you go to Urology, “Oh yes, it’s the problem,” and then you’re in the middle.
I even went to the CUB Clinic, so here I got them both together, so they need to decide on something. They’re still in one room and in the other – one says yes, the other says no.
Mother of Naomi, age 10
Constipation
I think Ditropan (Oxybutynin) also causes constipation, and she already has constipation. She’s been on Laxate (Lactulose) and MiraLax (Polyethylene Glycol-Electrolyte Solution) and Ex-Lax (Senna), but still she is not regular. And again, same thing, she can’t control her bowel movement, so sometimes she is okay but then sometimes there’s an accident. And that is kind of not going good. That’s actually the main problem these days…She was on MiraLax after surgery for like six months, and now after drinking MiraLax she feels nausea…so we might ask the doctor for some other medicine. Usually on the weekend we try to do the MiraLax or Ex-Lax, so that on the weekend she’s completely cleared, clean. So that’s like every week she’ll clean out, and after a couple weeks she’ll have more problems, like nausea, because of constipation.
Father of Jaya, age 8
Bladder or bowels
The Ditropan (Oxybutynin) we think makes her a little bit constipated, so she’s on MiraLax (Polyethylene Glycol-Electrolyte Solution), but less than a full dose. She’s on like half a teaspoon, so it’s not a whole lot, and that and the cone enema tend to keep her moving relatively well. If she overeats, she’ll get crampy, and sometimes we have a hard time telling whether its her bladder or her bowels, so we cath her, see if that makes it better, and if not, go do a cone, see if that makes her better!
Father of Siobhan, age 9
Achieving a balance
We were really struggling to come up with sort of a bowel program for him, a balance between not wanting to have accidents and also being able to not get constipated. So for a while he was on stool softeners and all of that, and then we stopped all of that. We found that it created little accidents all the time, so it was better not. And we just really kind of managed it with diet – you know, a lot of fruit and fiber and vegetables, things like that.
Mother of Henry, age 12
Mother of Henry, age 12
Five different GI specialists
He would get so obstructed that he would curl up into a little ball and just completely strain for, like, 15 minutes. At one point, when he was a little over a year old, he got so obstructed it took him a little over a week to pass a stool, and that was after they gave him three suppositories and two enemas! They said he wasn’t eating enough fiber, he wasn’t taking enough fiber in his diet, but he was eating spinach, he was drinking prune juice, they had him on Sorbitol (Mannitol), he was having mineral oil in his bottle…but he always had problems with his bowels. Even to this day, no one has diagnosed him with any type of bowel issues, and he’s seen about five different GI specialists.
Mother of Ethan, age 13
I try to do it dietary
This summer she’s been eating so many strawberries that constipation hasn’t been a problem. Once school starts I try to do it dietary, because I’ve tried MiraLax (Polyethylene Glycol-Electrolyte Solution), I’ve tried Colace (Docusate), and what happens is, she’s got okay rectal tone but she tends to have a spastic colon – she tends to be constipated, but when she has to go, she doesn’t feel like she really has to go until it is right in her rectum. So she doesn’t really have a lot of time, so if her stool is too soft, that’s not good. That doesn’t work out really well!
So she’s better off being a little bit on the constipated side so that she can manage the bowels a little bit better. But it’s a fine line. I use popcorn a lot, and if it seems like she hasn’t gone in a couple days I’ll give her an enema. Like if we’re going to go on a trip – like sometimes we visit my family out on Long Island for the weekend, and a lot of people get irregular when they travel anyway – so before we go I usually say, “Let’s do an enema and make sure you’re all cleared out and you have a good BM, and that way if you don’t go for a day or two because we’re traveling and stuff, it’ll be okay. We won’t be in the car trying to drive five hours in the middle of New Jersey in the midst of traffic and you have to go every five minutes.” So that seems to work out okay.
Mother of Kayla, age 14
It was just so unpredictable
Well, the very first thing we tried, way back when, was suppositories. At one point, maybe five, six, seven, he said to the GI doctor, “I really don’t want to do this anymore.” She said “Okay, we can change it, but you’ll have to take medicine by mouth.” And he said “That’s fine.” And she said “You’ll have to take it every day.” “That’s fine, I’ll take it!” And at that point he switched from Dulcolax (Bisacodyl) to MiraLax (Polyethylene Glycol-Electrolyte Solution), a stool softener, which worked good for a long time. But at that point, when we were doing the Dulcolax, I could control his symptoms better, so that he could empty out in time for a pool party and stuff. Then when he got onto the MiraLax, it was just so unpredictable that if the day came for the party and he didn’t go to bathroom, he would get really upset because he didn’t want to go to the pool in case something happened while we were there. So it was a really difficult period of time.
Mother of Alex, age 17
Just being patient
They had to take part of the colon for the augmentation…The doctor said, “No, you have to use the colon for the bladder because we’ve already used the appendix for his bowel surgery.” Had they known at the time, they could have done both of them with it.
The surgery messed both systems up, which we weren’t anticipating. We didn’t really talk about that possibility with the doctor. It was just like, “Yep, I’m gonna take part of the colon, make the bladder, dadadada, so many days in…” It never ever came up that he’s taking part of the colon and that whole thing, you know? The recovery was more a problem with the colon than it was the bladder augmentation…he kept getting really backed up with the bowel and stuff. And it was quite painful for him to do a bowel flush, so at one point he didn’t want to do it. They said that because they cut the colon and put it together, there was a dead spot in there – plus his doesn’t work as well anyways, so add that dead spot, that’s where he was having the problem. It’s just being patient. You know, the doctors said, “Once it heals, it’s going to get going again,” and it did.
Mother of Alex, age 17