Sarah May Dec 7, 2022
Day 6 of #CCawarenessWeek, I skipped days 4 and 5 because I had a fun intestinal flu which has triggered a #CrohnsDisease flare-up. I feel like shit. Crohn's Disease affects my mental health because it is difficult to live with chronic pain, sometimes I say to myself, 'I don't want to live like this.' Because it's not just the intestinal pain, it's the arthritis and the exhaustion. I was thinking about going back to uni for a Master's degree and wonder if it is even possible. Anyway this disease sucks and there is no cure and I am at a higher risk of colon cancer. Apparently this intestinal flu is going around so I am not looking forward to people saying, 'I had intestinal flu for 2 days, now I know how you feel.' You don't. You get to go on with your normal life. I don't. Also assisted suicide is not legal in Italy and thanks to the Vatican it probably never will be. #IBDvisible
Sarah May Dec 5, 2022

Day 4 of #CCawarenessWeek Let's talk about diet. If you have Crohn's or Colitis I highly suggest starting with an elimination diet to see what are your triggers. 90% of the time it's going to be dairy, high fat animal products. But everyone is different. For me, eating a high fiber diet with no animal fat or protein has been best. And variety is key. It's not just oatmeal and some psyllium in the morning. The more variety of plants one eats, the healthier the gut biome. When I started eating like this, it seemed counterintuitive to eat MORE fiber, but it has been a lifechanger. Read 'Fiber Fueled'

One thing that always bugs me is when people without IBD give me dietary suggestions, or judge me for enjoying wine or a coffee. Please don't make suggestions, we are already aware of whatever 'study' you read about in Vogue or USA Today. We read the medical journal. Don't mansplain my disease to me, also don't suggest a gluten-free diet. #CrohnsDisease #IBDvisible #FiberFueled

Sarah May Dec 4, 2022
I missed Day 3 of #CCawarenessWeek because I didn't have wifi. I have been on and off of prednisone for 24 years because it works quickly and has certainly helped me avoid more removal of intestines, I currently have 2/3 of a colon. Prednisone has helped me avoid an osteomy bag, but it comes with its own problems. The 'roid rage being the worst for me, but also, at 46, I will come into menopause in the next 10 years and long term use has already had an impact on my endocrine system. And I will very like have severe osteoporosis. Prednisone is prescribed for loads of auto-immune disease, usually for those of us living with an #InvisibleDisability. I often wonder how much more I could gave accomplished in life without #CrohnsDisease or #Prednisone brain fog. So just an FYI. You're friend who seems manic may just be on steroids. Also please don't make back handed comments about out insatiable appetite. It comes with the drugs.
LoriPlungDec 3, 2022

Today is Day 3 of Crohn's and Colitis Awareness Week!

I've chosen to make IBD visible by sharing a photo of the completion of my 10-hour TPN infusion.

TPN stands for total parenteral nutrition. It supplies me with all the nutrients my body doesn't absorb due to my short gut. It keeps me hydrated and feeling well.

This is how I gratefully begin every day!
IBD Can't Stop Me!!!!

#ccawarenessweek #ibdvisible #crohnsdisease #TPN
#ShortBowelSyndrome #grateful #Gastrodon #IBDdon

LoriPlungDec 2, 2022

Today is day two of Crohn’s and Colitis Awareness Week.

I'm proud to support and advocate for my fellow IBD Warriors and make IBD VISIBLE!

Who’s with me?

#IBD #IBDVISIBLE #Gastrodon #IBDdon #crohns #UlcerativeColitis #IBDWarriors #ccawarenessweek

Sarah May Dec 2, 2022
Day 2 of #CCawarenessWeek. I live with #CrohnsDisease and one thing that bothers me is when healthy people who had a gut ache or some diarrhea for a day or so tell me, "Now I understand how you feel every day." No, you do not. If you are friends with anyone living with an #InvisibleDisability one thing you can do is learn about us. Wikipedia is a good start . Don't make health suggestions. It comes across as patronizing. Don't suggest yoga, CBD oil, taking a walk, getting some sun, Ayurveda, or some random diet you heard about. All of us are very aware of our diseases. We know our personal triggers. And we are also very good and masking the constant pain we live in.
We are people, just like you, and like all people, we want to feel heard and accepted. In #wine and #food, please believe them when they say they have allergies. For example, I cannot eat animal products. Huge trigger for me, and I am often treated like a burden, or served the most boring food imaginable. #MyIBDstory
Sarah May Dec 1, 2022
It's IBD awareness week and this is #MyIBDstory
I was diagnosed with #CrohnsDisease in 1999, but had symptoms for four years prior. My #MisognistDoctor (It's very common in medicine) prescribed Prozac to me for years when I would go in with symptoms like explosive bloody diarrhea, extreme abdominal pain, arthritis, and long term fevers. He diagnosed me with 'hysteria' and depression. I almost died of sepsis when I went to the ER in the worst pain of my life with a perforated bowel. If he had just referred me to a GI I may have had better treatment and an earlier diagnosis. There are millions of us living with an #InvisibleDisability and #ChronicPain but it doesn't define me. I am still a person who happens to live with an uncurable disease that impacts my life every day. Over the next week I plan to share my story to raise awareness. #CCawarenessWeek #IBDvisible