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For Granted

In my latest newsletter, I shared a brief story about an experience in the Las Vegas airport with my daughter Em when she was just 15-months-old. Her g-tube came out while we were in the security line.

For those dealing with tube feeding, I think you'll relate.


#CerebralPalsy #Disability #Parenting #TubeFeeding

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Tubes and lines #Gastroparesis #TubeFeeding #TPN

It has always been a love hate relationship for me and my tubes. It's kind of funny really, they can make you so miserable and cause so much pain, yet in the end without them I wouldn't be here. Thankful to be tube free for now and hopefully forever, a long decade of tube feedings and TPN is finally behind me, only the gastric pacemaker remains.

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Anyone on here have malabsorption issues? Or on tube feeds and tpn?? #TPN #TubeFeeding

Hi. I'm new here, anyone on tube feeds and TPN at the same time?


Anyone have J tube feeds back up into your stomach? What do you do about it?

I've had a J tube for going on 7 years and have had intermittent trouble in the past with tube feed backing up into my stomach and then sits there until I vomit. After sepsis in November and an ischemic bowel injury has become a major issue. Constant pain, vomiting, dry heaving all feeding into each other and i was getting practically no calories and was only staying hydrated because of my iv fluids. Well, we tried and tried but nothing was significantly improving so in February started TPN, which is almost a death sentence for me because of my history with sepsis... At that point though there were tough conversations about dying fast from sepsis or a slow death from malnutrition and dehydration... So did end up starting TPN but my GI Dr also placed a straight (separate) G tube so that i could vent instead of vomiting all the time. Making a world of difference as it broke the cycle of vomiting and dry heaves, while not gone, much less frequent. So tried to reintroduce tube feed and was supposed to go up on tube feeds and slowly come down off TPN. Well... Sepsis... Again... After that cleared plan was to forge ahead as i had finally got to a whole 10 mls/hr. Was home only 10 days before sepsis struck AGAIN. (Same bacteria so think the antibiotics didn't clear the previous infection completely.) Came with a vengeance and landed me in ICU again on pressors AGAIN... As if that wasn't enough developed flash pneumonia and went from a little dry cough to intubated in under 40 hours. Really brought me to the brink this time and ICU DR said if I continue with a central line it will kill me. Thus began the all out battle to get my gut to accept tube feeds. Was able to get tube feeds up to around 1,000 calories but due to covid was rushed out of the hospital before seeing if i could stay hydrated via j tube, as they pulled the central line. That has been the biggest piece of my struggle right now. Within 2 weeks started doing peripheral IVs for hydration as tube feed was consistently backing up and leaving me with way more output then intake. Also driving that was lack of urine and concern i don't end up with kidney damage. Well, am getting hydration via sub q now (long story) but to get adequate total fluid intake had to back down the tube feeds so now only getting around 700 calories a day, obviously not sufficient long term. Driving factor still being that when i increase the rate it flows backward. Last 2ish weeks been spiking fevers and Dr thinks it's a gut infection so doing rosefen shots to hopefully clear that up and maybe improve the inflammation. Hoping maybe once that's healed I'll tolerate the feeds better. Sorry this is so long but wanted to share some background to the problem. Does anyone have experience with this type of malfunction? What did you do about it?
If you made it through all that, thanks for reading! Look forward to hearing back! Be Well! #Gastroparesis #TubeFeeding #Dysautonomia #Gtube #abdominalpain #Sepsis

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Any tube feed people out there? #TubeFeeding

I'm currently sporting the NJtube and am awaiting surgery to have a peg and a pej placed as separate tubes and am wondering who is out there with either of these or both or the combined peg-j. My mental health is suffering significantly as I smile for my daughter and carry on just trying to make it through as my current tube is a dud and I'm not receiving any nutrition. Life is so up and down for all chronically ill so sending spoons and love to yall.
#Tubies #Tubiestrong #TubeFeed #njtube #PegTubes #pej #Depression #MentalHealth #ChronicIllness #fighting

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Lack of awareness and understanding hurts us.

So I’ve seen a post doing the rounds in the chronic illness community that starts with the quote ‘at least it’s not cancer’. And my goodness I am so glad that I don’t have cancer. But this post expresses some of the struggles we have, with invisible illnesses, with little understood illnesses, with illnesses that have no cure or fail to achieve symptomatic relief with medications or treatments.

One of the things that’s been on my mind recently is not only do the ‘able bodied’ - I say this in quotation marks as I personally do not see myself as disabled but I also don’t see myself as a normal person my age due to the restrictions put on my life through my illness but that is beside the point - but also doctors, professionals, even in some cases ‘specialists’ (a few of you will know personally some of whom I mean but I will not mention them by name as whatever illness whatever hospital I’m sure many other people with the same illnesses as me and others will have experienced the same) fail to comprehend our symptoms, or why certain treatments aren’t working or that although they can’t fix the problem doing nothing to avoid making things worse isn’t viable either as your quality of life is non existent. They can’t comprehend that people want to be able to work, want to be able to live independently, fall in love, get married, have a family or a dog or whatever their dream is. It is not the professionals fault we are ill, I agree - but it’s not our fault either. So ultimately why should we have to live a lesser version of ourselves?

See that’s one thing that cancer has - everyone (doctors and peers alike) automatically understands how scary it is, how overwhelming, how it makes you question everything, and also when they don’t have any better treatments they always do everything they can to offer symptomatic relief - that’s literally the role of palliative care, to make you as comfortable as you can be. They don’t expect you to always put on a brave face.

#ChronicIllness #Weneedawareness #TPN #TubeFeeding #EDSAwareness #Gastroparesis #LivingWithPOTS #Functionalgutdisorder #Changingperceptions #EDUCATE