I'm looking to connect to other young adults dealing with tube feeding/gastroparesis. I have a history of POTS also, if anyone actually knows what that is, lol.
I'm looking to connect to other young adults dealing with tube feeding/gastroparesis. I have a history of POTS also, if anyone actually knows what that is, lol.
Hi Nikki,
I am on a liquid diet and I don't know what POTS is, but I wanted to welcome you to this site. Many of my friends here are dealing with tube feeds.
This is a great group of people with a huge variety of issues relating to the GI tract.
-Nancy
Hi Nikki,
I'm 32, have gastroparesis and am on tube feeding. I've never been told the specific name of POTS but dr's have frequently commented on the postural changes in my blood pressure and pulse . Especially when dehydrated.
Welcome
Hi Nikki: I'm on tpn for gastroparesis. Not sure what POTS is-can you fill us in. I did look it up but I'm not sure I understand. Have you always had this or was it recently diagnosed?
Hi!
Not sure if I am "young" enough but I am tube [enterally] fed via a PEG!
Is POTS something like postural tachycardic syndrome? Might be way off course but dragging it from the dark recesses of a brain cell!!
Speak soon
Chris
www.mypeggypeg.blogspot.com
Hi Nikki,
I'm 26 and have gastroparesis and POTS. I'm on TPN and some j-tube feeds. I've got sick right before graduating from college when I was 22.
I am 27 and just got diagnosed with gastroparesis. It happened when my surgeon damaged my vagal nerve during a Nissen Fundoplication (they think) I would love to know how you are all dealing with this. I am not doing very well. What is POTS? I see that most of you are on tube feeds. Did you try other procedures first, or did your doctor's put you on tube feeds right after you were diagnosed? My doctor's are talking about several different procedures. I don't know what to do.
Hi Niki,
I am 30 and I have progressive autonomic neuropathy that has caused dysautonomia, including POTS. I also have gastroparesis and receive TPN and also have a pacer (doesn't do much for me). I have also recently been dx'd with two movement disorders and I am being evaluated for a mitochondrial disorder. I Look forward to talking with you.
Sheridan
I am also looking to meet young people who have an idea of what I go through. I am not familiar with your condition but would love to hear about it and how it affects you. You seem like you area vary strong person who keeps fighting.
I have a J tube that I use for enteral feedings and a G tube that I use to drain/vent my stomach. I became sick with GP symptoms right after gallbladder surgery. It is speculated that my vagus nerve was cut during the surgery. I weighed 215 lbs before getting sick and am now down to 130.
I have looked into other treatments but the pacer is on hold right now. There is slow motility in my intestines now so the doctor said getting the pacer was not possible right now. They did a gastric emptying study on me and that is how they found out that I had GP
Hi Nikki,
It's nice to meet you. I have a g-tube for venting and a j-tube. I'm currently on TPN for gastroparesis. I have also done j-tube feeding in the past, but I have trouble because of intestinal dysmotility as well.
The TPN seems to work the best for me and I currently don't qualify for the pacer surgery because my intestines are affected. My GP developed after my gallbladder was removed for biliary dyskinesia. I was evaluated for autonomic dysfunction at Mayo Clinic in 2002 but they didn't find much. I sometimes have dizziness and BP changes, but it is never consistent and tends to come and go so not easy to diagnose.
I hope you are doing as well as you can be. THis is a great community.
Take care,
Jen
Nikki,
I'll be 22 next month and have a GJ-tube, the g for venting and the j for meds and feeds. I spent 3 years on TPN, because I couldn't tolerate feeds, but because of getting a pacer I can now tolerate feeds(most of the time).
I hope to hear more from you. It's always nice to be able to talk to someone who knows how you feel.
Char
Hi Nikki,
My name is kerri and i doubt i'm young enough but i feel younger than i am, 37 yrs old but act like i'm 27, been sick for 5 yrs and you can look at my profile to see my illnesses. They are quite the list. if you need a friend i'm here.-kerri
Hi! I'm Gillian. I'm 22 and have motility problems, too. I am on and off tube feeds. I have an appendicostomy because my intestines and bowels don't work. I take Reglan so my stomach empties quicker, and it works pretty well. I also would like to talk to other young adults. Some of my friends have POTS because the have CFIDS like me. I have chronic pain and GERD, too. It's good to hear that they're so many people in similar situations!
Hi Nikki!
I'm not really a young adult - I'm 36 years old, but I'm in a similar boat. I have autonomic neuropathy and POTS as well as gastroparesis, malabsorption, colonic dysmotility, celiac artery stenosis (actually, re-stenosis - I had surgery for it but it has returned), and a j-tube. I can only really tolerate liquids. The most solid thing I can tolerate is egg whites that I fry up sometimes. I never get hungry. I'm also allergic to all corn products so I'm very limited in even the liquids I can take. I've been sick for 2 years now. I've spent most of those two years in the hospital. I just recently had my third j-tube inserted because the other two got infected. This time the infection spread to my blood - I had 5 different bacteria in the blood. I'm very immunocompromised. I've been on TPN multiple times and have developed hepatitis and/or pancreatitis each time. I've also had multiple PICC line infections while on the TPN. I take things one day at a time. I'm only 85 pounds (normally I'm 118 but the last time I weighed that was in early 2006). My life is not as active as it used to be but my family and friends (and boyfriend) have been excellent support for me. I hope you can find support from family or friends, but if not, I'm here for you if you have any questions or want to chat!
Mimi
Wow, you guys are all awesome. I would love to chat more with you all. Perhaps we can set up a yahoo chat or something some time?
Anyway, thank you all for reaching out and telling me your stories. I would love to talk to anyone!
I agree! we should set up a yahoo chat or something
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