g-tube

[torikat32]

Does anyone have a g tube?  Due to severe dysphagia and weight loss  I may have to have one put in and wondered how people are coping with it any problems .

thanks
Kat

[torikat32]

Hi JJ  my last barium swallow showed severe motility issues the food just sits in my esophagus and wont go down and I feel it there no matter what I do eat even a grain of rice is stuck all day regardless of amounts of liquids I drink. Speech therapy recommended a soft diet and ground meat which still gets stuck. Soft food like pudding I can still feel residual but not as bad like a steak.

GI doc ordered a endoscopy for oct 8th to make sure no structurel problems exist but she dont believe it will show anything. After that there isnt really anything she will be able to do and I dont want to go to a puree diet.


if I have the tube I will still be able to eat but I am losing 5lbs a month and now down to 128lbs at 5ft8 its not healthy. My nutrionist said a bmi under 18% is considered malnourished ans I need 1800 calories a day and eating once a day I am npt going to get the calories I need.

have you had a speech eval done? Maybe there is something they could do to help you.


Thanks
kat

[supermum_ms]

Hey Kat,

I have weight loss issues, it's always been far too easy for me to loose weight (my dad was the same) but since developing speech issues, oral muscle fatigue, 24/7 tremor etc it's made the last few years even more of a battle. I'm naturally a skinny petite but i've gotten quite bony this winter, with 5 months of issue after issue after issue.

I don't actually know my exact weight at the moment, i'd been hovering at 45kilo (99 pounds) 18% body fat for a couple of years, which was already 4-7kilo (10-25 pounds) under where i'm suppose to be but i just couldn't get it higher. I know i'm less now because i've definitely lost what curves I had, I'm honestly too chicken to get on the scales and find out where it is, so i'm using how my clothing fits instead of scales.  

I already focus on high calories, iron/protein high nutritional input, take mini vitamins and additional liquid supplements and have had to get creative finding ways to produce easy to make meals, that gives me what i need nutritionally as well as giving me less chewing etc. My body doesn't make sense, my blood work will be perfect but still i'd be loosing weight, though i do think the fact i haven't stopped moving since 09 hasn't helped matters for me, the speech issues only adding to the problem.  

I'm genuinely interested in what's got you to the point of a Gtube being a considered option, realistically it could end up being a long term solution because of the why's behind it, anything invasive is a serious step to make and usually one of last resort, and i hope your not there......    

Interesting information you might like to read, i had a couple from medscape but somehow lost them, i'll find them if you want them, just let me know.

http://books.google.com.au/books?id=uwhuHXeL4hgC&pg=PA129&lpg=PA129&dq=MS+and+G+tube&source=bl&ots=cBlNxAzz1c&sig=bmFMrk9FWAkHxRf0sN4LMwMLTUI&hl=en&sa=X&ei=7X4nVMTQOtXp8AWBvIKQBw&ved=0CEEQ6AEwBA#v=onepage&q=MS%20and%20G%20tube&f=false

Hugs............JJ

[karryon55]

Hi Kat,

I don't have first hand experience with G tubes but I have had some gasonastric tubes before that go into the nose to your stomach. These were fine for short periods only.

I do know of someone who had to have this done for another condition & it was really important to get the nutrition into their body as they were losing so much weight. They got used to it & their new normal. I'm sorry I don't have any brilliant information to help you.

I'm sure you have a good Speech Therapist that has been working with you & you have tried everything else. If this is what is needed I would get it because if you lose too much weight your health will decline.  

I hope it all goes well for you & gentle (((hugs))) to help you along this journey.

Karry.

[Corriel]

Hi Kat, I do not have any words of experience or wisdom to share. It sounds like you really need the tube, so hopefully it works out for you.

Corrie