Life’s a Polyp

Things such as chronic bowel problems, past surgeries, or conditions (like adhesions) that cause pressure/blockages in the gut, muscle/nerve issues in the intestine that change how it moves can lead patulous

The final radiologist diagnosed me w/chronic patulous small bowel: there’s a segment stretched wider than normal. It can cause diarrhea, pain, bloating, malabsorption.

Living With a Rare Disease: Learning Self-advocacy Practical tips for developing self-advocacy skills

My latest article about learning how to self-advocate with rare disease is now live on RareDisease.net!

raredisease.net/living/self-...

Fierce Mama Proceeds from this merch benefit NORD Familial Adenomatous Polyposis Research Fund and Cure Alzheimer's Fund in honor of Jenny and Amy's mothers.Jenny and Amy share the life and chronic illness storie...

We’ve been working w/Spread Good Shop & are excited to announce a limited time merch fundraiser in honor of our mamas & A Daughter’s Love Podcast. Proceeds donated to NORD FAP Research Fund & Cure Alzheimer’s Fund. It’s 3 items in 5 different colors each
spreadgoodshop.com/products/fie...

Small bowel follow through day
I downed the first bottle in under a minute. My tech says “oh….wow, most people sip on it”. I explain, it’s one of the better tasting things I have to drink for tests 😂
” it can take up to 4 hours for the test “. My transit is 1.5 hours so we should be pretty quick. 😆

YouTube video by Tye Martin The TyePod Panel 1

Listen now to the first TyePod Panel where myself and other chronic illness advocates share the how we find support in podcasts and navigating difficult days.

youtu.be/QuABYwqga-c?...

OMG yall! It’s a kids book about DNA and $1 from every sale is donated to hereditary cancer advocacy. 😍😍

Go to www.MendelCat.com
Paperback ISBN 979-8-218-77999-3
Hardbound: ISBN 979-8-218-79986-1

Welcome! You are invited to join a webinar: Webinar 2: Commonly Seen Predisposition Syndromes. After registering, you will receive a confirmation email about joining the webinar. This free, 3-part webinar series empowers parents and young adults with knowledge about inherited cancer risk, common genetic syndromes like Lynch Syndrome, Li Fraumeni Syndrome. CMMRD, and when to co...

Don’t miss out on Part Two about Common Genetic Cancers by Krishnan Family Foundation

Commonly Seen Predisposition Syndromes
Sept 24th
8pm ET

Register:? qrfy.io/74q7vibjfk

Life's a Polyp Life's a Polyp explores life with two rare diseases - Familial Adenomatous Polyposis and Short Bowel Syndrome. It is also where A Daughter's Love Podcast is housed. In it, Jenny and Amy heal grief thr...

Super excited to share that my cousin & I officially launched our podcast where we share our mama’s stories with cancer and Alzheimer’s or rare disease as well as our grief journey of losing them three weeks apart

www.YouTube.com/LifesaPolyp

creators.spotify.com/pod/profile/...

A Daughter’s Love Podcast is LIVE on Podcast platforms NOW and will go live on YouTube Saturday! We’re so excited for you to listen/watch 
🔗 creators.spotify.com/pod/profile/...
🔗www.YouTube.com/LifesaPolyp

Cognitive Behavioral Therapy for Chronic Pain Understanding CBT as a Tool in Chronic Pain Management

"due to the ongoing condition of #ChronicPain, the #pain ..no longer is a reliable warning that harm is occurring. Rather than withdrawing from activity in #fear ..it is to our benefit to engage..with #pacing practices in place.": buff.ly/N74cFNV

by @lifesapolyp.bsky.social
#spoonie #CBT

You’re correct that CBT-Chronic pain & myself neither said to push through anything. It’s all in the article but in summary, It focuses on how to safely be able to increase activity w/an MDT & ⬇️ the recovery period needed by not over doing it & also ⬇️ risk of dep/anx, which they both can ⬆️ pain

We had a great time recording our 1st episode of A Daughter’s Love Podcast!
Between recording, catching up, & lunch, we even made a couple TikToks!😆
Episodes will be available on podcast platform & YouTube 
Be sure to subscribe to
www.youtube.com/lifesapolyp 
TikTok: www.TikTok.com/@lifesapolyp

In-Person/Virtual the Rare Disease Caucus Briefing about Regulatory Urgency & Therapeutic Opportunity for Rare Disease.

🗓️ Thursday, September 11
⏰2:00 p.m. - 3:00 p.m. ET

🏛️House Rayburn 2060, Washington, D.C. & livestream

💻Register
everylifefoundation.org/rare-advocat...

YouTube video by Life's a Polyp Rehab and Recovery for Brain Injury

In my latest YouTube video, I share what I learned for Rehabilitation and Recovery from Brain Injuries

youtu.be/UFIg0Wlf2M0

NORD’s virtual community conversation:

Navigating School and Beyond: Advocacy Tips for Rare Youth and Young Adults.

Date: Thursday, August 21, 2025
Time: 6-7 p.m. ET

Register:

rarediseases.acemlna.com/lt.php?x=3DZ...

YouTube video by Under The Desk News How To Save Gay Marriage

UTDN & Your Gay Lawyer partnered to share the 9 documents needed to create a domestic partnership to provide the same protections of marriage
If you’re not aware of what you need to protect your wishes & relationship, watch UTDN’s linked video
Live in Love & Love to All ♥️🌈

youtu.be/hOhIHdmnBM0?...

Caregiving for Mom - The Last Years Reflections on My Caregiver Role for Mama

CW: #Death
.
"That was when we knew there was no more hope of saving her. The only thing left I could do as a #caregiver was make her last days as comfortable and full of love as I possibly could.": buff.ly/blN9jLQ

by @lifesapolyp.bsky.social
#family #ChronicPain #spoonies

Get ready!
On August 24th, Dan will be sharing his AFAP journey with an expert panel at 2:30pm GMT.

Register at: www.path-scope.com

Hereditary Live is a one-of-a-kind platform where clinicians present challenging cases and receive real-time feedback from
global experts.

When: August 14
6:00 p.m. ET | 3:00 p.m. PT

tinyurl.com/2ctkrxk5

S2E38 with guest Jenny aka Life's a Polyp The Tye-Pod · Episode

It was great to be a guest on The Tye-Pod!
You can listen now

🧬 What is a Cancer Predisposition Syndrome?
Learn how genetic testing can help identify cancer risks early.
📅 August 13th, 2025 ⏰ 6pm ET

🔗 Register: us06web.zoom.us/webinar/regi...

Big thanks to Krishnan Family Foundation, International WAGR Syndrome Association & Illumina, Inc.

🚨 CMS is trying to change ostomy supplies to be in the Competitive Bidding Program that would greatly decrease access and choice for ostomy supplies
Please submit your comments and any personal story to CMS to protect ostomate access to their medically necessary supplies
www.ostomy.org/take-action/

Cognitive Behavioral Therapy for Chronic Pain Understanding CBT as a Tool in Chronic Pain Management

"We often think that it takes less time & we can be more #productive if we get everything done when we feel our best. In actuality..Moderating our activity allows for more things to be done in total with less #recovery periods required.": buff.ly/6cBUQws

by @lifesapolyp.bsky.social‬
#ChronicIllness

Join me in wishing the best daddy a girl could ask for a very happy birthday!
He’s forever steadfast for me and mama, always doing whatever needs to be done.
I love you so very much and wishing you a very happy birthday today 🫶

Last night dad & I went to visit my cousin Amy & family ♥️
We’ve been cooking up something exciting! We’ll be launching our new podcast to share the life and cancer stories of our mothers as well as our own experiences, memories, and grief of losing our mothers less than a month apart.
Stay Tuned!

It’s my birthday! To help me celebrate, my biggest wish to share with you all is furthering FAP Awareness and Research as well as mama’s legacy and those of others lost by FAP whose loved ones carry on for them.
Together, we can make the world a better place for future generations.

Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome - United Ostomy Associations of America Part 1 of a Two-Part Series featuring Emily Rubin MPH, RD, LDN, Thomas Jefferson University HospitalWith over two decades of experience at the Thomas Jefferson University Hospital Division of Gastroen...

With Short Bowel Syndrome, stool consistency can make a big difference. United Ostomy Associations of America shares information to help with just that. While it focuses on SBS with ostomies, the same can be applied to a reconnection

www.ostomy.org/maintaining-...

Maintaining Nutrition and Hydration in the Management of Short Bowel Syndrome - United Ostomy Associations of America Part 1 of a Two-Part Series featuring Emily Rubin MPH, RD, LDN, Thomas Jefferson University HospitalWith over two decades of experience at the Thomas Jefferson University Hospital Division of Gastroen...

United Ostomy Associations of America highlights Short Bowel Syndrome and provides electrolyte drink recipes to aid with maintaining hydration. While the article focuses on SBS with an ileostomy, the same can be applied to a reconnection.

www.ostomy.org/maintaining-...

With a donation of $25 to Ostomy Canada Society, members receive 2 editions of the Ostomy Canada Magazine.
You can access the Summer 2025 edition at 👇🏻 www.ostomycanada.ca/resources/os...