Oley Foundation Support Community

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suction machine advice??

By Murel_Monster_Slayer · New reply yesterday at 10:54 pm
Discussion in Home tube feeding (HEN, enteral nutrition) · 2 replies
I got a portable suction machine to use in my home and when I am out. I don't have a trach but do choke on my saliva because of my paralyzed vocal cord. I never get a protectected airway and the vocal ...

wait and see

By margamouse · New reply yesterday at 10:51 pm
Journal · 1 reply
Wait and see is difficult for me. I have a tendency to look ahead and prepare for what I may face. So, trying not to worry about the possibility that my entire tract has slowed greatly and more to what ...

trying to find a MIC-KEY button for emergencies

By prettykitty · New reply yesterday at 10:38 pm
Discussion in Home tube feeding (HEN, enteral nutrition) · 4 replies
My GI doctor recently told me that I should keep 1 or 2 MIC-KEY buttons on hand just in case my GJ tube fell out. This way, I can keep the hole open before I can get to the hospital. I can't find where ...

hospital frustrations

By matt_chrs · New reply yesterday at 7:25 pm
Journal · 10 replies
I have already told multiple nurses that my tract has formed for my gtube and hence can guarantee that it's in my stomach. Hence if they try and shoot air into me I will, make a formal complaint to the ...

new nutrition drink

By matt_chrs · New reply yesterday at 6:46 pm
Discussion in Home tube feeding (HEN, enteral nutrition) · 15 replies
Hey everyone. I saw an add for ensure clear on tv today. Basically looks like coolaid but with lots more good for you nutrition. Anywyas what I want to know is, how thick is it? my hope is that I cqn ...

Steroids/give yourself a hand!!

By Cindylouwhoo · Posted yesterday at 3:28 pm
Journal · 0 replies
So glad I went to the rheumatologist today! I am steroid dependent, because of years of severe asthma, and now inflammatory rheumatoid arthritis. Of course since my gut shut down a couple of weeks ago ...

Dry Mouth from radiation

By BobandPaulette · New reply yesterday at 11:55 am
Discussion in Home tube feeding (HEN, enteral nutrition) · 1 reply
Does anyone have problems with dry mouth from radiation for oral cancer. Husband has been dealing with this for 10 years now but has gotten worse the past 3 years since he cannot take anything by mouth ...

Dating with a tube

By Ktmichelle · New reply yesterday at 4:50 am
Discussion in Home tube feeding (HEN, enteral nutrition) · 18 replies
So... I'm 25, single, and can only be fed through my tube. I really want to get back in the dating world, but I'm not sure how my dates might react to the tube... I am probably meeting a guy for coffee ...

Feeding tubes for Brides weight loss

By lilpeeps · New reply yesterday at 4:02 am
Discussion in Home IV feeding (HPN, parenteral nutrition) · 23 replies
I saw this on GMA this morning and was completely appalled that people are doing this to fit in a wedding dress. Do they not know that we use this just to SURVIVE! http://gma.yahoo.com/k-e-diet-brides-usi ...

neck iv

By stirk · New reply yesterday at 3:40 am
Discussion in Home IV feeding (HPN, parenteral nutrition) · 3 replies
i would like to know a lot more on insertion of iv in the neck ...

Oley Conference -- Don't Miss It!

By oleyfriends · New reply yesterday at 3:38 am
Discussion in Oley Annual Conference · 1 reply
Don't miss this chance to learn and socialize with other patients, families, and speakers involved with IV and tube feeding. It's truly a life-changing experience. People will be joining us from all around ...

Granulation tissue or what is it?

By TheTinkie · New reply yesterday at 3:37 am
Discussion in Home tube feeding (HEN, enteral nutrition) · 3 replies
Two months have passed since the last g tube was placed in my husband . Since November, he has had 4 g tubes starting with size 24 French, followed by an 18 Fr and now a 20 Fr (the current one). Granulation ...

pregnant with a GJ Tube?

By Helloimbree · New reply yesterday at 3:31 am
Discussion in Home tube feeding (HEN, enteral nutrition) · 10 replies
i was wondering if anyone has heard of someone carrying out a full term pregnancy with a GJ tube? is it possible ...

Gj tube placement pain

By Csmissingtexas · New reply yesterday at 3:20 am
Discussion in Home tube feeding (HEN, enteral nutrition) · 7 replies
I had a gj Tube placed 7hours ago and have been bawling in pain since. I don't cry either. Am I just week or do I need pain meds? How Long does this pain last? How do I care for it? They said to not eat ...

Just getting started

By Cindylouwhoo · New reply May 15, 2012
Journal · 4 replies
Hope to "meet" people on a similar journey. I first started on gtube feeding about 8 yrs ago, then 6yrs ago went to jtube feeding. Jtube feeds have made me nutritionally much better! I still have times ...

From Crohns Disease to a Bowel Transplant - how did it happen-140512

By qpr · New reply May 15, 2012
Journal · 4 replies
I thought that I would up date you as tomorrow's breakfast has just been delivered. It will be the first time that I have had breakfast in ages. I always thought that one of my first breakfasts would ...

TPN and life

By Karalyn · New reply May 15, 2012
Discussion in Home IV feeding (HPN, parenteral nutrition) · 8 replies
HI, My husband just received his first TPN last night and the pump broke. Waiting on a new one today. Was wondering about limitations with the port cath and TPN. He loves to ride his dirt bike and work ...

Really Happening...(Questions on procedures and how to handle this)

By mmarieb328 · New reply May 14, 2012
Journal · 7 replies
I went to the motility specialist I had been waiting to see for 4 months for a follow up for my GP. In that four months, I lost 10 more pounds, barely can eat, can't drink much, severe pain at times ...

The Death Of Pedro

By alovelyfall · New reply May 14, 2012
Discussion in Home tube feeding (HEN, enteral nutrition) · 3 replies
So I woke up this morning at 2:17 and my pump, I had named it Pedro (I name all my pumps), and it had shut off. I tried to turn it back on, nothing. I am really annoyed because that's all my feeds and ...

Swelling on left side/skipping heart beats

By ekcarroll3863 · Posted May 14, 2012
Journal · 0 replies
Hello everyone, I have had this going on for a year now, the swelling is bad on the left side of the body arm, hand, leg, ankle. My heart is also skipping beats, and the doctor I saw while in the hospital ...

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The Oley Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Oley Foundation, an Inspire trusted partner.