WANTED: Crohn's End

(Featured the original ”Crohn’s End” blog: Daniel’s stay in the hospital during his recovery from an emergency surgery due to a ruptured intestine)

Greetings my fellow crohnies, friends, and family,

I hope you’re having a beautiful Spring!

Crohn’s End has been taking a break. We’ve had several new members join us in the past few weeks and I want to thank them for expressing their support by creating profiles.

I think we all realize that life is a busy endeavor. At times we flow through life like a raging river with a rapid pace. At other times, life is like a quiet and gentle stream.

Crohn’s End functions as a place for me to slow down and reflect. It is not a highly active social site and probably never will be, but the social media here still serves its function as a reflective stream of slow medicine for all seek to end disease.

I’m taken aback when I hear of friends and family who have been diagnosed with diseases. The causes, components, and conditions that led to their diagnosis are not always understood. This lack of answers can often cause distress. Distress cannot stomp out disease. Slowing down and taking time to reflect is another type of medicinal approach that I’m proposing here.

When I come back to this site from time to time, I’m reminded of how both spontaneous expression and deep introspection can serve to produce one’s own slow medicine.

Slow medicine is not anything tangible. It is more of a concept. It is cultivated within yourself. My slow medicine involves this website and the insights that it offers me when I come here.

Let me explain how this site came to be and how it has helped:

If you were here from the beginning, you’ll remember how this website emerged from my confusion and desperation. Something had literally been “eating at my gut” and the unexpected flare-up brought me to the emergency room. Both the pain medication and my need for communication triggered a purge of mania that produced quite a bit of social media, as well as some good.

I captured video of my stay at the hospital. I tweeted and made connections. I had great conversations with my family and friends. My brother Todd wrote a song about the site. My sister-in-law Karen spread the word and raised money by doing a Crohn’s walk. People who I had never met before were showing up and sharing beautiful insights into this condition. I ended up being featured in a campus newspaper, with a headline, “Networking for Hope”. For a brief moment in my life I had become a micro-celebrity.

One of my cynical friends joked that he knew I enjoyed attention, but that Crohn’s End was taking it “a bit too far.” It’s funny because it was partially true. I realize that some of the content is pretty revealing, but I was doing it for a good cause. I sincerely wanted to reach people who were going through similar experiences. My goal in creating this site was to give other Crohnies, and everyone else, hope and healing.

When I come to this site, I reflect upon that goal, as well as my health.

Today, the website has gathered some dust and many profiles lay frozen in place. As we approach the one year anniversary of Crohn’s End, I plan on freshening up the site with some new content and hopefully we’ll feel a little more warmth here. I don’t expect it to be anything too grandiose, but I’d like it to help it become a thirst quenching stream of “slow medicine”.

P.S.

After Googling “slow medicine”, I found that a respected geriatrician at Dartmouth Medical School named Dr. Dennis McCullough, originally coined the term. From what I found at at this article on PBS.org, it is defined as: “trying to let nature take its course rather than aggressively fighting the ravages that sometimes accompany old age.”

I think the idea of “slow medicine” should extend beyond geriatrics and include all of us who seek to harmonize with the healthy flow of nature. I agree that slow medicine is not about fighting for a cure. It is about taking small insightful steps involving trusted doctors, ancient wisdom, self-reflection, and every-day appreciation of all of life’s magic.

(Featured the original ”Crohn’s End” blog: Daniel’s stay in the hospital during his recovery from an emergency surgery due to a ruptured intestine.)

There were no tubes dangling from me. There was no more “partner.” The next shift nurse would walk in and ask “where is your partner?” She’d be referring to the rack of IV fluids and monitors that was pretty much keeping me alive for the last week.

I hated those things. I felt so much better after having had a meal and walking down the halls without my partner. Dr. Miller told me I could probably leave soon. He took a look at my belly wound and pointed out how the red markings that replaced the yellowish color was granular tissue. I was healing pure, clean, and simple.

Most of the previous indications were that I was going to be there 2 weeks or longer. There was the possibility of infection and need for additional surgery. However, a doctor should wonder when a patient is starting to do their own dressing changes what other steps in the healing process they might be taking into their healing process.

I walked more than normal. I would not sit still and suffer. I would stand, stretch, brush my teeth, shave, scrub myself, work on the website, nap regularly, write, and try to study (this was more impossible than standing). Everything in my body was commanding me to keep going, to not be passive, and to be grateful for what I could do instead of focusing on whatever was holding me back.

I did not have a set schedule. I saw friends and family. My parents came to visit me the most. My father would show up in the room each morning looking haggard but charmed to see me. He was usually sipping on some mocha-like thing that I made me drool. He helped keep my head in the game. He was my coach. He urged me to play defense against my doctors and to keep them on their toes by actually asking them questions. Francoise was a continual force of intellectual inspiration, in subjects other than just French (which is mostly what she teaches me).

Darren and Ginny (my parents-in-law) reminded me to sustain my joy and to not lose hope during my hospital stay. Parker came by and told me that there are always worse things. I pointed at his missing leg, and he said “that’s nothing.” Bryson stepped into my room with his beaming smile and encouraged me to think forward into a different time and place. Curtis and Treva sat beside me and basically let me vent. Heather welcomed my tears. Evan welcomed me to think about things other than my lousy condition.

While on the phone with my brothers and sisters I remembered how connected we truly are and what a magical force our connectedness provides.

My wife was with me during the first couple of days of my stay. She had plans to go to San Diego to see our brother-in-law (of sorts) graduate from college. She didn’t want to leave me. I told her that she should go and that there was nothing for her in this hospital room other than the man who would be exiting it as soon as possible. She understood completely and realized there was more for her in San Diego during my time within the burning infernos of healing.

I can’t say enough good things about all of my nurses. I’m amazed with the level of McKenzie Willamette’s staff. Even the Lane Community College interns were brilliant! I won’t list all of their names here, but these are quality people who each brought personality and compassionate care to the table.

What can I say about my surgeon? Dr. Miller could do what he does in his sleep. I know that sounds scary but the guy is super intelligent and sometimes difficult to understand. Kinda like the body. You know? It’s pretty super intelligent and difficult to understand. Anyway.

Last person needing mention is Dave, from the campus newspaper. He’s a photographer and was doing a multimedia piece on the campus newspaper website about me and this site. I was basically able to make a new friend who ended up being the person who gave me a ride home after I was sewn up.

I could continue on, but I’m not sure about what. This is more of a journal entry anyway. If you came this far, then I’m proud of you. I love you and thank you for your thoughts, prayers, and whatever other strange voodoo you do within those secret chambers of your mind.

(Featured the original ”Crohn’s End” blog: Daniel’s stay in the hospital during his recovery from an emergency surgery due to a ruptured intestine.)

I am a Student at the University of Oregon majoring in Journalism. I created this site because I was angry. I recently had another “flare up” of a disease that I thought I had under control. I am determined to share as much of my experience as possible… because if I don’t, I feel like my time here is just a waste.

I call this site Crohn’s End, because in my ideal world I put an end to it. I lead the heroic battle against this meaningless monster who goes around bullying so many of us. While I may not be living this dream, I do believe that this disease can end. There is research being done; advancements are being made. We have already come so far.

The simple fact that I am able to receive this surgery is a miracle (albeit a horrific one) that many in the world will never experience. The fact that we do have advanced medicines that are helping people with Crohn’s put their symptoms on hold is a good thing.

In my opinion, this is still not enough. When it comes to health care everyone should have it. Everyone in the world should have equal access to quality medicine. No one should have to suffer like this. Lives are far too valuable to be brushing aside while business as usual goes on.

Since this is a social network feel free to contact me directly through the site. If you also have Crohn’s (or colitis for that matter) then use this place to make some noise. It would be great to see other people’s videos, writing, etc.

This site is not a source of medical advice and has no experts. All we can do is recommend that you find a good doctor. Always consult your doctor before you begin or end a medication.

Feel free to share diet, nutrition, and exercise information. All of us should be thinking more about not getting sick in the first place. If you do share information make sure that it is not affiliated with any products, that it is from a reputable source, and that it relates strongly to Crohn’s and other digestive diseases like Colitis, or IBD.

But for the most part, just think about something you can do to put and end to this disease, or any disease for that matter. Life is not meaningless when we help channel our efforts into helping remove our neighbor’s suffering.

Dr. Kelly walked hesitantly into my room and genuinely seemed concerned that I was in the condition I was in. He explained that my case was “fibrillar stinotic.” The gradual tightening of my small intestines left me with a delicate territory from which to begin medication treatment. In his opinion, Humira may have failed me to a certain extent. He recommended that I stick with Humira for now. Especially, since the most deeply effected areas had been removed. Overall, he seemed optimistic with the possibility of taking a more proactive treatment protocol in the future based off of the positive effects of my surgery, the positive effects of Humira, and the positive effects of Imuran. He makes me strangely hopeful that things are indeed getting better even though, at times, they seem to be getting worse.

Joanna was in the room with me and seemed equally pleased that I was moving forward in mind, body, and spirit. Her acupuncturist, Zachery Corbett told her that from his eastern medical perceptive, it was a good thing that the dense form of my intestine had been removed by a good western physician. It was a representation of a kind of letting go of past pain, guilt, and hardships that no longer served my highest good.

I brought up stem cell treatment to Dr. Kelly and he says he had heard good things about it in the past. He does not seem to have the kind of vision that I do. Yet… Probably because he hasn’t the time to see outside the walls of his traditions. As you know, I am hopeful that Crohn’s will end. I think we can get there with the help of practical nutrition, stem cell treatment, and bacteria/whipworm research.

The central ingredient to making all of this happen. is to generate community awareness regarding this subject. I hope that we can bring together leading experts to not only share, but listen, and discuss the field of Crohn’s research. I hope that we will be both inquisitive and respectable in their midst, because ultimately they are the ones that make the decisions that guide our livelihoods. I hope this community does more from the bottom up than what the medical establishment tries to do from the top down.