Can I keep my colon?

Photo by Marcus Leal, sourced from Unsplash

Waking up from anesthesia feels a bit like waking up mid dream. It is disorienting reconciling your groggy waking life with the fading remnants of dreamed images and voices. But there are no dreams with anesthesia, only blackness. And on first waking the blackness diffuses to a cloudy haze.

I shook my head as my doctor tapped me on the shoulder and began talking. I had to concentrate. She was talking about my colonoscopy results. They weren't good. In fact, my colon was so inflamed that they weren't able to do the colonoscopy at all. Something about abscesses, fluid pockets, and sepsis. Ileostomy...what's that? They can reroute my intestine to a bag to let my colon recover. Huh, that doesn't sound like something that would happen to someone like me. I nodded off as my cart was wheeled into the hallway.

A few months earlier I had ramped up my search for answers to why I was feeling increasingly unwell. Over the past several years I had recurring joint pain, stomach upset, and fatigue. These symptoms had been a part of my life for years in some ways, but their severity had ebbed and flowed and increased so gradually that I hadn't connected them. Still, 'in my gut', I knew something was wrong.

I tried posture correction, physical therapy, massages, trigger point techniques, stretching, and saunas for joint pains with limited relief. Nominal changes in diet did not have much effect on my stomach discomfort. And 9 hours of sleep a night still did not feel like enough. It was the stomach discomfort that made me realize this might be more than a lifestyle problem (although my drinking habits could not have helped). I was going #2 urgently and frequently several times a day, often several times before and after lunch.

After a few blood tests that did not look too far out of the ordinary, my doctor prescribed rifaximin, an antibiotic often used for 'traveller's diarrhea.' About a week or so after starting the antibiotic, I had the rabies shot sequence after getting bit on a run (a story in itself). About a week after the last dose of the rabies shots, I came down with a cold or flu that put me on my back for a week and knocked me down five pounds. A week after I recovered I was on a weekend ski trip.

My symptoms were exacerbated during the ski trip. I was bloated, gassy, and felt like I had to go to the bathroom almost all the time...but couldn't pass anything except gas without considerable effort. I continued to go downhill during the following week at work. I sweated and clenched my way through my Friday morning meetings and desperately held it together during my Friday afternoon conducting interviews. I visited my doctor Saturday morning in considerable distress and got sympathetic head nodding. By Saturday evening my bowel movements were causing sharp stabbing pain that curled my toes. By the time I arrived at the ER on Monday I had hardly eaten in three days and assumed I must have appendicitis.

Several hours passed as I prepared for a CT scan. I felt so uncomfortable that I almost forgot to feel sorry for my left neighbor vomiting into a bag and my right neighbor getting his anal abscess drained and the man with the echoing screams down the hall. Several more hours passed as I waited for the scan interpretation. The ER doctor said that the appendix was inflamed. But he suspected that the inflammation was tertiary; the inflammation was most severe in my intestines and colon. It looked like something called Crohn's disease. I would need to stay overnight to get it further checked out. I did a cursory search online and put off further research for another day.

I was put on fluids and new antibiotics overnight. By next afternoon I had seemed to recover enough to go home. My temperature was normal and I was holding down liquids ok. H drove me home. I lay in bed and had some chicken broth and looked forward to sleeping this whole thing off.

I ran a fever that night. The doctors had said to come back if I developed a fever...and so we reluctantly drove back, not even 8 hours after I had been released. Thankfully H was there to drive me back and help check me in, because by the time we got there I was rocking and sweating in pain and shuffling unpredictably back and forth to the toilet. I was brought into an ICU unit and hooked up to a heart monitor...which I had to continually page to get taken off so that I could resume my awkward, hurried shuffle down the hall to the toilet, dragging my IV bag along behind me. This went on every 15 minutes or so until 5am or so when I was moved to a private room.

By mid morning Wednesday I was throwing up fluids and still clearing what little was left in my bowels. At this point the doctors were more concerned and wanted a colonoscopy done ASAP. If I had known what the prep would involve I never would have consented to do it in the state I was in. For those who have never had a colonoscopy, it consists of drinking 4+ liters of a vile tasting laxative solution while evacuating every last content of your bowels for hours on end. I was having trouble keeping down fluids and had to drink the nauseating solution slowly...so slowly that it took me all night to finish, trading off between gagging down laxatives and painfully passing them out. By Thursday morning I hadn't slept in nearly two days and hadn't eaten a solid meal in almost a week. I felt delirious. In retrospect, the anesthesia was hardly necessary.

This takes us to the introduction. I was too inflammed for the doctors to safely perform the colonoscopy. I was told I would likely need surgery and that the colonoscopy would have to be repeated after my inflammation had gone down.

The next few weeks at the hospital were a parade of doctors and surgeons and nurses and scans and bloodwork and diagnoses and estimates. I was put on prednisone, a steroid to bring down inflammation. I was put on a PICC line for intravenous nutrition - a conceptually upsetting device that consists of a catheter inserted into your inner arm by your bicep and fed through to your heart. Thankfully I responded well to the steroids and the IV nutrition and a second colonoscopy was successfully completed. It showed all the hallmarks of a typical Crohn's disease case and the biopsy for Crohn's came back positive. I had ulcerations, fistulas, and abscesses by my ileum (portion of small intestine) and significant inflammation and ulceration of my colon.

I had never heard of fistulas. A fistula is an abnormal connection between parts of your body. For those with Crohn's it can manifest as a connection between intestines to intestines, intestines to skin, rectum to bladder or even, in female patients, from rectum to vagina. Horrific. In my case (thankfully?) I had an intestine to intestine connection.

Complicating my case and contributing to my long hospital stay was a persistent infection in a fluid pocket in my fistula. Treatment for Crohn's typically involves immunosuppressant drugs. The prevailing medical understanding is that the disease is exacerbated by an overactive immune system that indiscriminately attacks healthy digestive tissue. Tamping down the immune response should give the tissues a chance to heal. Of course it is not always optimal to have a suppressed immune system, particularly when your immune system should be fighting an infection. And the prednisone I was taking already acts as an immunosuppressant. So I was stuck in limbo, we couldn't treat the Crohn's until the infection was resolved, but we couldn't let up on the prednisone because the Crohn's would continue to worsen.

After several weeks of prednisone, IV nutrition and antibiotics, monitoring and follow up scans we felt comfortable declaring the infection at bay and adding an additional immunosuppressant drug called Remicade. The treatment options for Crohn's are very limited. For severe cases like my own, Remicade is the preferred approach. It is administered every 8 weeks by infusion (IV drip). I was reluctant to take something so heavy duty, but was informed that there weren't better options. It was either this or surgery to remove the damaged portion of the intestines. I preferred to keep as much as my intestines as I could for as long as I could and so went with the medication...with many reservations.

By the time I left the hospital, three weeks since I had first arrived, I was 25 pounds lighter and struggling to get up and down stairs. It is incredible how quickly muscles atrophy on bed rest and no solid foods. I made time every day in the hospital to walk the halls with my IV and do air squats in my room...but still found myself exhausted even standing for prolonged periods of time after release.

Six weeks later at my check up my doctor was amazed to learn I had put most of the weight back on and was trail running several miles at a time. Not much more than a month later I took several hiking and backpacking trips in the mountains of Appalachia. An MRI showed significant improvement in my inflammation and my blood work improved as well. How to explain it? I may have been an excellent responder for the medication. I think there are several other things I did that contributed to the rapid recovery as well.

It has been over a year now since my diagnosis and in that time I have spent countless hours researching Crohn's with the intent of looking for meaningful ways to improve my life and prognosis. Crohn's is understood to be a chronic, lifelong disease. Without prompt medication and treatment, I believe in my case that it would have been fatal. Even with the latest in medical technology, the majority of people with Crohn's will have at least one surgery for their condition. Quality of life is dramatically impacted. The disease surfaces in 'flares'. A sufferer will be stable for some period of time, typically aided by an immunosuppressant medication. Over some period of time the medication will lose its effect or some trigger will cause the disease to resurface of its own accord. Reasons for this are not well understood. I want to understand, not out of medical curiosity but because it profoundly affects my life and future.

I plan to share some of what I have learned here, especially what I have found to be personally helpful. I also plan to share more of my experience with Crohn's, I have found others' shared experiences valuable and hope someone else will find the same here.

Some possible future topic categories:

• Diet and nutrition
• Healthcare system
• Natural and experimental therapies for Crohn's
• x year retrospectives

I have a hard time asking for and receiving help and haven't expressed all the gratitude I feel. I am fortunate to be surrounded by family and friends and am thankful for all the well wishes, hospital visits, offers for support, and patience in accommodating my new bizarre diets and my ability to talk about them ad nauseum. Many thanks especially to H who jumped in headfirst to help. More to come.