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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 6 replies, 4 voices, and was last updated 5 months ago by Halsey Blocher.

  • Author
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    • #22619
      Crystal
      Participant

      IDK how to lead into this topic so I’m just gonna say it: I have a severe bloating problem. Part of it is due to the laxative medicine I have to take because I can’t go to the bathroom on my own. Then I think it’s also because I swallow a lot of air throughout the day. The fact that I’m always bloated it seems is annoying but I’m used to it now. My main beef with the problem is that I can never seem to relieve the gas I have while I’m sitting up and I don’t know why. I think it’s because of how turned my body is due to scoliosis. I even researched it and came to that conclusion. But I still don’t know what to do about it. I can’t lay down every time I feel bloated. And sometimes I honestly can’t tell if I’m bloated or if I actually need to go poop. Like right now I’m about to ask my mom to put me on the toilet even though she just asked me if I had to use the bathroom and I said no. I’m so tired of this and I don’t know what to do about it. Any suggestions? We already talked to the doctor and he said there was nothing he could give us. How can I relieve the gas while sitting?

    • #22620
      DeAnn R
      Keymaster

      Hmmm…I know with a feeding tube a lot of people talk about venting to get extra air out. Not sure if you can do that somehow with the ng tube? Otherwise maybe something like Gasex (not sure on spelling) or Beano?

    • #22621
      Alyssa Silva
      Keymaster

      Hey Crystal. This isn’t embarrassing at all! I struggle with bloating too. In fact, I have a bad bout of it right now from eating too much dairy. For me, Mylanta works wonders. If you have never had it, I’d experiment cautiously. The high level of magnesium softens my stools, and because you’re already on a laxative I wouldn’t want you to aggravate your intestines. But, it really does work for me— almost instantaneously. And because I don’t have a g-tube to let air out, I feel this is my next best option.

      Please don’t ever hesitate with questions. That’s what we’re here for!

    • #22628
      Crystal
      Participant

      Thank you guys! To be honest, I’m trying not to go the route of medications since I already take so much and plus, the last time we tried medicine for the problem, I got this bad rash on my leg. But what is venting? I’ve never heard of it before.

    • #22632
      DeAnn R
      Keymaster

      Crystal, I can’t give you much info, as I don’t do it myself, but venting is a way to let excess air out through your feeding tube.

    • #22635
      Crystal
      Participant

      Okay. I’m gonna have to look into it. Today I was extremely bloated. 😑

    • #22637
      Halsey Blocher
      Participant

      I’m actually not sure if venting works with an ng tube. With a surgically placed tube you attach a specific extension that goes a little deeper into the tube to release air. But there could be a way to do it with an ng tube that I’m not aware of? I hope there is.

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