In November 2012 I had just turned 30 years old and my wife and I had been married for a bit over 2 years, but were together for over 6 by then. On the newer side we had a 1 year old baby girl and I had just started my new job at Google 6 months earlier.

At first I thought I had a bad stomach virus, but after 2 weeks of some very worrying trips to the bathroom I finally saw a GP and told him my problems. He gave me a few tests and told me that I had a bacterial infection called Clostridium difficile (aka C. Diff.). Which was odd, because it's usually the kind of infection that you get while in hospital, but I had been completely healthy for my whole life. He started me on a cycle of some very potent antibiotics: Flagyl and Vancomycin. After another week of worsening symptoms is when things got really bad... and really scary. I couldn't go to work that week, I still remember describing the pain like someone stabbing me in the gut with a knife and twisting.

I had to stop eating. Drinking water was excruciating. I couldn't leave the bed anymore, and the only movement I could make was to curl more tightly into the fetal position. By now my fevers were regularly spiking over 102 F, and I spent most of the night sweating myself into an exhausted few hours of sleep. After a few days of this I finally called my GP who told me to go the ER immediately. On my first trip to the ER I sat hunched over in a waiting room chair for a few hours, probably as pale as a ghost. When they finally brought me in and heard my C. Diff. diagnosis everyone put on their quarantine outfits and stayed the fuck away from me. Oddly, they only gave me 2 bags of saline IV and sent me back home.

After another few days at home, writhing in agony in bed, still unable to eat anything and barely drink anything I had to go back to the ER. This time I called my GP (who showed extreme care, and was adamant I go back to the hospital) when I got to the ER. Luckily he had done his residency there and knew a few of the doctors. This time my C. Diff diagnosis got me a first class ticket to a private room and quarantine sign. I felt mildly bad about this, because after Hurricane Sandy 1/2 of the hospitals on the east side of Manhattan had been shut down and the wait time for a hospital bed from the Beth Israel ER was over 24 hours for some people. (I got over feeling bad for others pretty soon after).

I was wheeled up to my new room and asked to poop in a bucket for another C. Diff test. Almost as fast I was hooked up to IV Flagyl and Vanco for the "big guns". That night my fever hit 105. The next morning a doctor finally came to see me for more than 30 seconds. This was the first time they told me the C. Diff tests came back negative, but "it must have been a fluke" so they asked me to poop in a bucket again. This was pretty problematic, given that I hadn't eaten anything in almost 2 weeks at this point. This continued for a few days, each night the fevers making wish I would just die, followed by doctors coming in the next day and wondering what was wrong with the damn test results. No C. Diff.

At this point the confusion of what could be wrong became an obsession. Every nurse or doctor who came in, I asked what is it. Their answer.... "we think it's C. Diff., it's just not showing up in our tests... you need more antibiotics".

On the fifth day the pain became excruciating, I was lying in bed, dead still, just trying to hold onto the edges hard enough so the pain in my finger tips made me feel anything other than that fucking relentless twisting knife in my gut. Finally someone in the hospital seemed to notice that I wasn't doing so well, and they sent me to get a CT scan. A few hours later a doctor whom I had never seen before walked into my room, he may have introduced himself, but I was so deliriously preoccupied with my pain that I have no idea. In a monotone voice with now questions he said "I have the results of your CT scan, we see some micro perforations along your large bowel and believe you have fulminant ulcerative colitis. We're moving you to the surgical ICU and may need to perform emergency surgery to completely remove your large intestine. You'll need an ostomy bag if that happens". The end. Please hold your questions until after the ostomy bag.

WTF? What did that guy just say? What is "ulcerative colitis"? Did he say "micro perforations"? Is that better than regular perforations? Just make the pain stop please. Why did it take a week to get a CAT scan when I'm already in the hospital? Why does my stomach still have this knife in it? These were most of the thoughts that quickly entered my brain.

None of those questions mattered. I spent the next 4 days laying in a cube in the surgical ICU. A very nice nurse (I sadly don't remember her name) wiped the blood from my back side each day. At 7am and 7pm the lead surgeon followed by his gaggle of surgical residents came to stare at me like a specimen. Talking about me, but never to me. Never actually making eye contact, and only glancing at me from behind their clipboards. I hated those surgeons. Never fucking once did they speak to me. Only stared, and talked about ripping out my intestine. I liked my intestine, but probably would have been OK with the idea of losing it if just any one of those doctors had explained what it would be like without it. Or why it needed to go. Or what the fuck was happening to me.

Luckily at this point, the IV prednisone that they hooked me up to seemed to be taking the pain away and I was able to hold a short conversation now. I was even drinking small sips of water like a human being again.

After my time in the surgical ICU I was sent to post-OP recovery for almost 2 weeks. By this time I loved prednisone. It was my new best friend. I could eat Jello!

When I was discharged from Beth Israel Hellhole, I mean hospital, I had been in for over 20 days. I lost 45 lbs, I entered at nearly 180lbs and left at almost 130lbs. I was still only on prednisone, because my major medical insurance for Remicade hadn't cleared yet. That would still take another 3 weeks before I could start treatment on an actual drug.

Eventually I started this new wonder drug and things got better for a little while. Unfortunately after 6 months I developed "drug induced lupus", which is less fun than it sounds.

But in those 6 months my diagnosis changed 4 times. From Ulcerative Colitis -> Crohns Disease -> "almost certainly" Ulcerative Colitis -> Indeterminate Colitis (that is an actual diagnosis https://jcp.bmj.com/content/57/12/1233).

6 years later, 6 surgeries, I've lost count of the number of hospital stays totaling almost 9 months. Failed off of 4 biologics. I eventually did lose my large intestine. I'm on my 2nd ileostomy (they put me back together once.... that turned out to be a very bad idea, and another story for another time).

In the end, it has gotten better. I'm skinny, but I'm healthy now.... mostly. My marriage didn't survive, partly for stress of illness but mostly for very different reasons.

Moral of the story... find a great doctor; don't go to the closest hospital, go to the best hospital you can find; become an expert on yourself and your disease; speak with doctors like advisors, not oracles; don't let other people tell you "what you should do", but listen to their stories and advice; reduce stress; stay active.

I still don't know what I have. My diagnosis is now "maybe" Crohn's (?). But I'm aware of it. Only my closest friends even know I have "a bag", everyone else just tells me I'm too skinny. I can deal with that comment when I eat 3 dinner plates in front of them. I don't have similar symptoms to other Crohnies. I can eat anything seemingly without consequence, my triggers are almost certainly stress related. They're also (so far) completely localized to the large intestine and lower (although I have had horrible canker sores since childhood). Luckily none of my small intestine or upper digestive tract has ever been noticeably affected (other than the canker sores). Overall I feel lucky to have great doctors now, and a (usually) positive outlook, but damn...

The psychological toll is not to be discounted either. I should have sought a group to speak with, or someone who knew first hand what this was like. I became very angry for a long time. This didn't help keep my stress levels down. I also find it hard to find the line of "am I lazy?" or "am I sick?", this question is annoyingly common. I try my best not to be a "1-uper" when someone tells me they don't feel well, but mostly I try to get them to stay away from me since the immunosuppressants make a common cold feel like malaria (I really don't like my coworkers who think coming into the office sick is what a good soldier does). Overall, it is a very lonely place.

IBD sucks

edit:

+1 for r/crohnsdisease and r/ostomy (like another poster mentioned above) both are great communities