Not Too Rare To Care

Yesterday was rare disease day 2023 * and I want to spread some awareness on one of my illnesses that is categorised as rare (which is: it affects less than 1 per 2000, CIPO is 9 in 1.000.000): Chronic intestinal pseudo-obstruction (CIPO) Like many other rare illnesses, CIPO is complex and its progressed form lacks…

We Woof You A Merry Little Christmas

Dear all, We wish you a wonderful Christmas time. May the warmth, togetherness, love and joy of Christmas be with you throughout this time and the New Year.  Enjoy the heartfelt wishes, calmness and excitement. Believe in wonders, love and peace.  Warmest wishes also from my mum, Bo, Emmy and Einstein, Evita Thank you for…

A Leap of What?

Bad News and Some Further Neurogastro Stuff First of all, some bad news that I will compress and explain as rationally as possible. I received the results of the neurogastro tests . Unfortunately, the neuropathological evaluation of the full thickness resection shows a (congenital)* myenteric hypoganglionosis/dyganglionosis/in segments an aganlionosis and also a ganglionitis. My enteric…

(Don’t) Trust Your Gut

This post is mainly about neurogastro stuff and some recommendations in the end, if you want to read about absurdism, stones, optimism, Urvertrauen and donuts stay tuned for the next post. I added more on dysmotility and parenteral nutrition. Can You Trust Your Gut? The situation hasn’t changed much other than the subileus symptoms have…

Walking Towards Motility

Happy New Year I hope that the beginning of the new year has been as positive as it can be at the moment. Hopefully you had some calming and energising days, a Merry Little Christmas* and 'guten Rutsch'. May 2021 hopefully bring better days for us! Updates and Breathing ------ you can skip that ------…