Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 Hi, all-- I have a (probably odd) question for you. I've been reading quite a bit in this group about people who are experiencing severe-to-profound dysphagia and significant weight loss as well as other problems related to achalasia. I was just wondering why I don't seem to see people who have gotten a gastrostomy. Mic-key buttons are pretty low profile and offer a good insurance policy against malnutrition. One isn't restricted to canned feeds, either; it is possible to make more healthful foods that are normal to the rest of the digestive tract. This is just something I'm curious about. My 8-yo son who is suspected of having achalasia is functioning okay right now, but I have a 4-yo who has had a Mic-key button since age 2 (because of dysphagia from a brain tumor, thankfully in remission right now). Maybe before cancer treatment, the idea of a feeding tube was pretty horrifying, but it's the only thing that I'm going to miss when he grows out of needing it. I'm sort of coming about this backwards from the perspective of somebody who has dealt with 100% inability to eat by mouth, where we had no choice in the matter. If anything, I pushed our team to do the gastrostomy sooner because I realized the ng-tube was miserable and he wasn't going to start swallowing effectively any time soon (two years, as it turns out). What I'm trying to say is not that I am advocating gastrostomies for achalasia but trying to understand why it seems they aren't a tool that is used in achalasia cases. This is a very different disease, so I'm sure the approach is totally different. Cheers, Tamiko, m/o Aidan (suspected achalasia, manometry with videoscopy scheduled for 2/28) www.caringbridge.org/visit/jediaidan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 >gotten a gastrostomy No way, no way, I am doing fine and love to really eat! That is for someone near death or very young. Just add butter a fat which opens the LES, the butter makes it slop down or Olive oil lets the food slip through also. Ray CA OC 81 old as dirt. > > Hi, all-- > > I have a (probably odd) question for you. I've been reading quite a bit in this group about people who are experiencing severe-to-profound dysphagia and significant weight loss as well as other problems related to achalasia. > > I was just wondering why I don't seem to see people who have gotten a gastrostomy. Mic-key buttons are pretty low profile and offer a good insurance policy against malnutrition. One isn't restricted to canned feeds, either; it is possible to make more healthful foods that are normal to the rest of the digestive tract. > > This is just something I'm curious about. My 8-yo son who is suspected of having achalasia is functioning okay right now, but I have a 4-yo who has had a Mic-key button since age 2 (because of dysphagia from a brain tumor, thankfully in remission right now). Maybe before cancer treatment, the idea of a feeding tube was pretty horrifying, but it's the only thing that I'm going to miss when he grows out of needing it. > > I'm sort of coming about this backwards from the perspective of somebody who has dealt with 100% inability to eat by mouth, where we had no choice in the matter. If anything, I pushed our team to do the gastrostomy sooner because I realized the ng-tube was miserable and he wasn't going to start swallowing effectively any time soon (two years, as it turns out). > > What I'm trying to say is not that I am advocating gastrostomies for achalasia but trying to understand why it seems they aren't a tool that is used in achalasia cases. This is a very different disease, so I'm sure the approach is totally different. > > Cheers, > Tamiko, m/o Aidan > (suspected achalasia, manometry with videoscopy scheduled for 2/28) > www.caringbridge.org/visit/jediaidan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2012 Report Share Posted February 14, 2012 Not odd at all. I've wondered myself. Part of it is that the GIs don't tend to think of Achalasia as any kind of emergency, and aside from which they tend to believe it's " just " GERD for months or years, despite what *we* keep telling them. I'd self diagnosed years earlier as " dysmotile esophagus " and I knew there was virtually nothing to be done for that. When the Achalasia really accelerated in the spring/summer, I was actually beginning to *long* for a feeding tube. I felt awful, was losing about a pound a day, was weak and wobbly. And scared to death. That said, we have a real horror of the *idea* in this culture. In my reading about tube feeding (AFTER I nearly starved to death), it became clear that there were people who would actually rather die than get one (ALS patients come to mind). The fear is NOT rational, but after you read here about the fear of " going under the knife " and what people will do to avoid it, well. . . . Funny, too, if you consider how hated the manometry is: an ng tube is like a permanent manometry, lol! At least you can forget (pretty much) the mic-key in between feedings. And, yup: it's much MUCH superior to what a lot of peeps here have gone through (including me). Good luck with your little one. May it turn out to be something more amenable to cure than Achalasia. . . . HugZ, in Wild and Wonderful WV > > Hi, all-- > > I have a (probably odd) question for you. I've been reading quite a bit in this group about people who are experiencing severe-to-profound dysphagia and significant weight loss as well as other problems related to achalasia. > > I was just wondering why I don't seem to see people who have gotten a gastrostomy. Mic-key buttons are pretty low profile and offer a good insurance policy against malnutrition. One isn't restricted to canned feeds, either; it is possible to make more healthful foods that are normal to the rest of the digestive tract. > > This is just something I'm curious about. My 8-yo son who is suspected of having achalasia is functioning okay right now, but I have a 4-yo who has had a Mic-key button since age 2 (because of dysphagia from a brain tumor, thankfully in remission right now). Maybe before cancer treatment, the idea of a feeding tube was pretty horrifying, but it's the only thing that I'm going to miss when he grows out of needing it. > > I'm sort of coming about this backwards from the perspective of somebody who has dealt with 100% inability to eat by mouth, where we had no choice in the matter. If anything, I pushed our team to do the gastrostomy sooner because I realized the ng-tube was miserable and he wasn't going to start swallowing effectively any time soon (two years, as it turns out). > > What I'm trying to say is not that I am advocating gastrostomies for achalasia but trying to understand why it seems they aren't a tool that is used in achalasia cases. This is a very different disease, so I'm sure the approach is totally different. > > Cheers, > Tamiko, m/o Aidan > (suspected achalasia, manometry with videoscopy scheduled for 2/28) > www.caringbridge.org/visit/jediaidan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2012 Report Share Posted February 15, 2012 I have a Jejunostomy feeding tube and am not to bad using it either. Had the oesophagectomy back in October 2004 but continued to loose weight. My doctors decided i would be better and more healthy using a jejunal feeding tube. My latest tube has been in place now since 2 years last November and right out of the blue i had a phonecall from my stoma nurse to arrange a tube replacement in the next week. You see being able to use the tube for night feeds only has given me the confidence and the ability to regain some on my weight and i now find myself enjoying life more. And yes i can now relax enough to be able to eat a little a couple of times a day so i cna't loose. There is support out there for me should i need it. from the UK ________________________________ From: mer <ray_me_99@...> achalasia Sent: Tuesday, February 14, 2012 10:06 PM Subject: Re: gastrostomy question  >gotten a gastrostomy No way, no way, I am doing fine and love to really eat! That is for someone near death or very young. Just add butter a fat which opens the LES, the butter makes it slop down or Olive oil lets the food slip through also. Ray CA OC 81 old as dirt. > > Hi, all-- > > I have a (probably odd) question for you. I've been reading quite a bit in this group about people who are experiencing severe-to-profound dysphagia and significant weight loss as well as other problems related to achalasia. > > I was just wondering why I don't seem to see people who have gotten a gastrostomy. Mic-key buttons are pretty low profile and offer a good insurance policy against malnutrition. One isn't restricted to canned feeds, either; it is possible to make more healthful foods that are normal to the rest of the digestive tract. > > This is just something I'm curious about. My 8-yo son who is suspected of having achalasia is functioning okay right now, but I have a 4-yo who has had a Mic-key button since age 2 (because of dysphagia from a brain tumor, thankfully in remission right now). Maybe before cancer treatment, the idea of a feeding tube was pretty horrifying, but it's the only thing that I'm going to miss when he grows out of needing it. > > I'm sort of coming about this backwards from the perspective of somebody who has dealt with 100% inability to eat by mouth, where we had no choice in the matter. If anything, I pushed our team to do the gastrostomy sooner because I realized the ng-tube was miserable and he wasn't going to start swallowing effectively any time soon (two years, as it turns out). > > What I'm trying to say is not that I am advocating gastrostomies for achalasia but trying to understand why it seems they aren't a tool that is used in achalasia cases. This is a very different disease, so I'm sure the approach is totally different. > > Cheers, > Tamiko, m/o Aidan > (suspected achalasia, manometry with videoscopy scheduled for 2/28) > www.caringbridge.org/visit/jediaidan > Quote Link to comment Share on other sites More sharing options...
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