Februrary is ‘Rare Disease’ month. Please read more about the importance of raising awareness, improving care and support in rare diseases (including further references) in my post from last year. Examples for rare conditions are severe motility disorder such as chronic intestinal pseudo-obstruction (CIPO). More information can be found here including the information pack. Some art projetcs ‘Selten allein’ can be seen online and in person. I hope to update soon. Unfortunately, my health has further declined (slowly, but steady). Emergency situations are treated, symptoms are dealt with, the il ..read more

Uncertainty – Quantum, Philosophy and Illness A while ago I watched ‘A discussion with Dr Barry Kerzin* & Prof Carlo Rovelli about Nagarjuna’s philosophy and quantum physics’ as part of the QISS. I would like to share some thoughts from this discussion mainly about Nagarjuna’s philosophy (I recommend Garfield’s translation) and its application to the question of single identity (quantum mechanics aside). Nagajurna’s middle way is the foundational book of Mahayana Buddhism philosophy. Its central theme is emptiness. Emptiness is the absence of independent, inherent existence. Hence, it is n ..read more

Dear all,  From the bottom of our hearts we wish you all a wonderful Advent season full of hope, joy and love.  May your souls be infused with faith, your bodies be charged with warmth and your minds grow in gratitude.  Enjoy this calm time of togetherness, gifts from heart to heart and awareness of your senses.  May the light and hope of Christmas guide you into and through the new year. Winter Wonderland Things are unchanged here. My health has further deteriorated, frequent longer and more extreme (sub)ileus states that cannot be treated, more and stronger pain whose man ..read more

First of all, I updated the publication list below the last post regarding rare illnesses and CIPO. Another inpatient stay for pain management, so why not talk about pain? It goes on…even when it doesn’t seem so. Life always finds a way and blooms where one wouldn’t have expected it. The Pain's Reign (?) What I see in the mirror For now too long Pale, exhausted face Is it still me? Life has changed. Something so invisible Has such an influence Has it made me invisible, too? Drained, weak, poor. Detached from my older self, Detached from my newer body. Still never so aware of every cell i ..read more

Pseudo-obstruction or mechanical obstruction, that is the question Dear all,  Merry belated Christmas. I hope you had some relaxing days full of love, joy, laughter and light. May the new year bring (improved) health, bright hours, calmness, beautiful moments and happiness. Never forget our interconnectedness, we are all part of the universe’s flow. Even in the darkest times it can fill us with hope. Hope turned into strength. Strength turned into energy. Energy turned into new hope.  The following post is from the past months and does not present the past weeks which have been very ..read more

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 nervous system (ENS) ‘shows an unusually severe and rare finding with a manifold damage of the enteric nervous system which affects the ganglia cells and also the innervation’ which then manifests as a severe m ..read more

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 been increasing, my abdomen is dilating more and more and my liver is struggling. I am definitely not doing well. I am sick of clinic stays, doctor visits, A & E visits, those long drives to specialists, tests and interventions, calls and emails, I am sick ..read more

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 —— Unfortunately, I haven’t been doing well. The bowel atony has worsened (if a complete dysmotility can even get worse). I have been admitted to the clinic a few more times for another decompression and endoscopic emptying. Other than that, some fluids and nutrition iv, and failed stimulation of t ..read more

Dear all, A merry and bright Christmas to you! May Christmas bring small and bigger miracles for all of you (as we have seen today, Christmas miracles do occur, Boris!). I deeply hope that the global situation will improve soon and each and every one of you gets a few wishes fulfilled. I am meditating for you, sending all my kindness, hope and love. Wishing you a calm Christmas break and a better year to come, full of sunshine, inspiration, retreat, love and experiences that one will happily keep forever. Who knows, maybe we are awaiting a white Christmas here! Lots of love to you! I apologise ..read more

I am doing ok so far. It’s a tough recovery, but with small steps I am on the right path. The past night was very painful, but a new day has just begun and I am smiling towards the sun, realising that the nut is finally cracked.  Thank you so much for your thoughts, wishes, messages, pictures, videos, prayers, meditations… It is really overwhelming and I know that your lights guided me through the past weeks. – – – (skip this for more interesting stuff, this is just an update on my hospital stay) The odds were with me.  Right before the surgery I had immense flank pain and v ..read more