Top Tweets for #TPNStrong
After a brief hiatus we are back with #PatientExperience chat with @MondayNightIBD co-hosted by myself and @LoriPlung together we have 76 yrs of experience with #IBD, #SBS, #TPNStrong, #tubefeeding, and more! Join us in our🔥 convo below about #nutrition #NationalNutritionMonth
We’re so🙏🏼to #IBD patients & #Advocates who share their journey & experiences with #MondayNightIBD clinicians & patients!
🔷Today’s #PatientExperience & 2 #IBDPolls is led by @LoriPlung @SwapnaSpeaks: Nutritional support for your #IBD & communication about #ShortBowelSyndrome👇🏽
@SLPang @LoriPlung @MondayNightIBD @DeviousDwyer @EmilyGeist11 @Smudge92084582 @MJIBD @VoiceForIBD @salvia011235 @gameofcrohns_ @Youcantmakethi4 @sonyagoins1 @dowrick87 @merman1974 @srmbeauroy @docherty_eddie @IBDSuperHeroes @IBDBatman Sherry thank you so much for sharing! I am glad you got the additional nutrition when you needed it and it sounds like you owned it!! Yes you can travel on #TPNStrong!! It can be life giving! #MondayNightIBD
@LoriPlung @ownyourcrohns @MondayNightIBD Thank you @ownyourcrohns for your perspective! I agree with you both. 29 years of #TPNStrong as we like to call it in the #SBS world is the reason I was ready for the Bowel lengthening surgeries and recoveries I had. We are trying to do the same now with EN! #MondayNightIBD
RDs should lead this process!…but what do I know? 29 yrs of TPN and now tube feeding and oral eating for the first time without #tpnstrong. It’s not easy.
would be cool if people saw RDs while weaning off of TPN since it's been months since that GI tract has contracted in response to food, but what do I know
Oh come on @GoodDoctorABC parenteral nutrition saves lives. People every day live and thrive. @oley #tpnstrong
My client with GI challenges went to her PCP and was told so many scary stories about food! Dont do that!! All foods can be part of your daily intake! Avoid those that are spoiled or you dont like! Geez! #foodfear @evidencebased #TPNstrong #RDN
Great day talking all things about short bowel syndrome (SBS). Diet is so important - what you eat makes a difference! @nehagastrord #SBS #homePN #TPNstrong @SwapnaSpeaks
Its #HPN Awareness Week. Life saving IV nutrition that nourishes over days, weeks, years, a lifetime! Proud to be an HPN Dietitian! #tpnstrong #dietitiansinnutritionsupport
Maisy and her mom, Anna, were poignant and spread a message of living life with #tpnstrong and #centralvenouscatheters with the mindset not IF but HOW and the family is the expert #AVASM22
David Mercer referencing work by @SwapnaSpeaks and others on "the beautiful struggle" our #tpnstrong families face.
Much more a story of resilience than suffering.
Can't wait for more from #thegutsyperspective !
@PifrsP #pifrs
A5: Finding a home infusion company that accommodates your needs, incorporates shared decision making, listens to your requests, communicates with you as you like, and gives you resources is imperative to support on #tpnstrong and #tubefeedings #ShortBowelSyndrome
A4: Some challenges of living with #tpnstrong at home include asking why am I different, discomfort and trauma with dressing changes, constant fear of a central line infection, adapting to having a home infusion nurse, incorporating infusion into life sched. #ShortBowelSyndrome
A1: If an individual with #crohnsdisease develops #ShortBowelSyndrome other aspects of care that may be added on include, Traveling to additional subspecialty care, #tpnstrong, additional hydration, adjusting to sleep disturbances due to TPN
A3: We had to hook up #tpnstrong by 6-8 pm so I could go to school next day without being connected to TPN. If it was a dressing change day we did it in the evening. And trying to eat as much dinner as possible. I would (still) take 2 hours to eat. #shortbowelsyndrome
A1: (1) Every morning, I unhook my #TPNStrong and/or my #tubefeedings from the night infusion. Depending on my diarrhea overnight and sleep quality, I sometimes have to push myself out of bed or snooze my alarm and dedicate the morning to rehydrating. #shortbowelsyndrome
We are back! Doing another Twitter chat on #shortbowelsyndrome talking more about daily coping in the life of a parent and patient living with #sbs! Join us tomorrow Friday at 1 EST #tpnstrong #tubefeeding #shortgutsowhat #sbswarrior
Please join us this Friday at July 15 at 1 pm Eastern Time (5 pm GMT) for another #ShortBowelSyndrome Live Twitter Chat to discuss psychosocial issues that affect patients with SBS and their caregivers https://t.co/SBTZ2tqPYg
A6: Following advocates and #chronicillness #chronicdisease accounts on social media has helped me put my sentiments into perspective and have a readily accessible community to always relate to. Advocate created hashtags: #tpnstrong #shortgutsowhat #sbswarrior #shortbowelsyndrome
Hi! I was born with SBS due to atresia 32 years ago. I have lived on #tpnstrong and #tubefeeding my entire life. I am a #raredisease and #shortbowelsyndrome healthcare advocate.
@DrCIJRD @OleyFoundation @ASPEN_nutrition Thanks Carol…I know I will get through this. And I know Home #TPN is saving my life right now as it has so many times in the hospital before. #TPNStrong @OleyFoundation @ASPEN_nutrition
And as all our patients tell us…it’s just never easy being NPO
Glad you are home! I work with many people who have received home parenteral nutrition (HPN) for 10, 20, even 50 years!! It's never easy but life sustaining to reach their goals! #tpnstrong @OleyFoundation #RDN @ASPEN_nutrition
Our new normal at home on #TPN
Hard to be NPO still (3 wks now), but surviving
Amazing all the care we can do at 🏡 includes:
- #HomeTPN
- IV Antibiotics
- Wound Vac
- JP drain
@MichelleMMPA is doing an AMAZING job making all this possible- could never do it without her!
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