I am a 20 years old. I run multiple online businesses and do freelance work. My UC was severe, but surgery has given me a 2nd chance at life. Follow me on Twitter (https://twitter.com/jakeocallaghan) if you want to follow my recovery and check out my blog (jakeocallaghan.com).
Some more about Jake:
Crazy dude. Going to travel to/live in south America. Voracious reader – fiction and nonfiction. Like playing videogames – especially RPGs. Used to workout constantly (can’t wait to start again) and am obsessed with health + productivity. I value freedom and truth. I live a disciplined life and always try to improve.
Symptom free. Almost too good to be true!
A 2nd Chance At Life – Removing My Colon
My name is Jake O’Callaghan. I am a 20 year old college dropout (UGA, full scholarship) that was paying the bills through freelance writing (before I got sick).
My UC was severe. I went to the bathroom 20-40 times a day and was often so weak that I fell over and had to crawl back to bed.
I had zero quality of life. Life consisted of lying in bed in pain (I slept 16-20 hours a day), running to the bathroom, and ordering food because leaving my apartment was impossible.
I lived in the hospital, especially as my disease progressed. I spent my birthday and Christmas night there. One time I stayed for a month.
I tried everything I could (including strict SCD without dairy, eggs, or fruit), but nothing worked.
I went to Emory hospital in Atlanta and was rediagnosed as having UC (previous GI’s thought it was crohns).
I was already considering surgery, but now I was sure. I researched hundreds of surgeons and chose Jay Singh. Fantastic surgeon, explained things well, and great bedside manner.
I got c diff for the 2nd time a week or so before surgery. My mom collected the stool sample because I was in bad shape (she works in the medical field so she’s used to it). All the blood (and my current state) freaked her out. She called and got the surgery moved up.
Before the surgery I was in so much pain that I rarely ate. I was on prednisone (and feeling the effects), but it wasn’t helping much – though I think it was the only thing keeping me alive. I’m thankful the surgery was moved up 3 weeks because I don’t think my colon would have stayed intact much longer.
The combination of having no food in my stomach (caused endless dry heaving) and extreme weakness made the colon prep horrendous.
I sat on the toilet for ten hours or so (lying down made the stomach pain worse) so I didn’t sleep the night before surgery.
I stumbled into the waiting room. Somehow I had made it to the hospital without going to the bathroom, throwing up, or falling down. However, I had to rush to the bathroom multiple times after I was moved to a room.
The anesthesiologist was worried that I wouldn’t wake up from the surgery. But I couldn’t wait. I would only get weaker.
I felt an overwhelming sadness when they wheeled me away from my parents. There was a chance I wouldn’t wake up again. Just a month before I had begged for death. But I desperately wanted to live now that I had hope at living a good life.
I woke up and started screaming. My entire body was convulsing and I could barely move. They assured me that the surgery went well and gave me every painkiller known to man. The nurse said “this usually doesn’t happen”. However, the man next to me had the same surgery and was also screaming!
This was the worse pain of my entire life – and that was saying something. I didn’t think that things could get much worse than an IV rupturing in my arm (sending TPN into my veins), but I was wrong. I can only imagine what toxic megacolon feels like. It lasted an hour or so.
Most people actually feel pretty good after surgery (due to pain meds of course). I probably had a high tolerance to opiates.
I just reminded myself how great it was to be alive and waited it out. I’m used to intense pain, but that experience will always be engraved in my memory. I’ve had nightmares about it.
They rolled me to a room after I stabilized. Nurses had to throw me into the hospital bed because I couldn’t move or roll. At one point I tried to move onto my side and the pain made me gasp for air.
My blood pressure was high so they encouraged me to use the pain pump as much as possible. It was 6mg of dilated every 4 hours. My blood pressure soon became too low. I also had a high heart rate. I believe this is from the shock of waking up in intense pain.
I was extremely dehydrated. I could barely move my mouth. My lips were super dry. Talking was hard because I was so weak and at one point I lost the ability to talk altogether. I also had a sore throat from the breathing tube.
They gave me multiple boluses of fluid (7 or 8). This is unusual. My blood pressure would raise than lower again. They started to worry that all this fluid would cause damage.
They kept trying to put me in ICU. There was about 10 people in my room, and they were freaking me out.
A nurse came in and yelled that “I was going to have a heart attack.” A women from ICU came in after and told me that I was dying and needed to be put on life support.
I started sobbing after the women left. I almost never cry, but I’ll give myself a free pass on this one considering all the pain meds I was on. I cry all the time on opiates, sometimes for no reason.
One of the nurses calmed me down and I stabilized slowly.
It’s crazy how weak you are. Sitting up was impossible without help, and I needed a nurse to help me walk at first. Getting out of bed up to take a piss was a long, painful ordeal.
I pushed myself to walk and eat as much as I could. I know since recovering from 2 ACL surgeries that pushing through the pain (using common sense on when to stop) makes you better.
Seeing the stoma freaked me out. It’s been over a month, and I’m still not used to it. It turned out great though. The nurses were impressed.
The opiates do almost nothing for the horrible gas pains. Since you likely won’t have the complications I had, gas pains will be the worst thing you experience. They are going to be bad and may last for weeks, but if you have UC feeling pain isn’t unusual. Difference is, now you know the pain will go away and that you are moving forward.
My penis hurt from the catheter. I refused to look at it the whole time and didn’t think about it. I don’t deal well with stuff like that. Unsurprisingly, taking it out hurt pretty bad, but it was a relief to be done with it.
There was a point when they were determined to put in my catheter again because I wasn’t peeing enough. In sheer fear I chugged water and was able to pee. Dodged a bullet there. I heard putting it in hurts a lot and my junk was already really sore.
I had a drain hanging out of my other side. Taking it out hurt pretty bad (though I had it in for much longer than most, so it hurt more). I could feel it disconnecting from something in my body. Thinking about that made me a little sick.
I started having trouble breathing the night before I was supposed to get released. They determined I had fluid and multiple clots in my lungs. Barely being able to breathe was frightening, but luckily no one told me I was close to death until days later.
I think they doubled up on the blood thinner (shot that burns like hell – everyone has to get them anyways). They also took me in for a thoracentesis procedure. They numbed the area, poked a hole in my back, than drained the fluid. They were baffled at how much fluid was in my lungs; they hadn’t seen anything like it. I leaned over for an hour (sitting) while fluid dripped out of my back.
The blood clots set me back significantly so I spent twice as much time in the hospital as normal. They gave me high doses of steroids and antibiotics.
My pain was mostly gone when I got home (aside from gas pains) so I cut back on oxycodone. They were giving me 120-160 in the hospital and I went to 20.
Big mistake. I started hallucinating at night. Hallucinations don’t usually bother me but these where pretty scary. My mind was in bad shape. I tried everything to return to reality but nothing worked.
It seemed like I would be insane forever. I kept hearing scarecrow from batman telling me to kill myself and that my mom was dead. It was the worst experience of my life – by far.
I was also throwing up a lot from opiate withdrawal. I bumped up my dosage and the nausea slowly went away. I never hallucinated again, thank god.
My UC is mostly gone. I still have my diseased rectum so sometimes I go to the bathroom normally (it’s only mucus and blood, no stool).
I hate having a bag. I think it’s disgusting and it keep leaking (though I know I’m putting it on right).
I have had two leaks while sleeping. They were horrifying. I almost would have preferred to wakeup to the horse’s head from the Godfather. Hopefully things will get better as I find a bag that works for me. Can’t wait to get it reversed though.
My surgeon told me that my colon was in horrible shape. As I expected, I was close to toxic megacolon. My colon was falling apart. It actually ruptured partially while my surgeon took it out.
I would have died if I didn’t have surgery. But I would have done it if my UC was half as severe.
Whether surgery is worth it comes down to individual circumstances, but I think more people should consider it.
GI’s often prescribe medicine that doesn’t work, causes horrible side effects, or stops working in a few years. Wouldn’t it be better to avoid the toxic drugs (not to mention prednisone) and get surgery over with instead of just delaying things?
Also worth noting of course is the natural route. While diet, supplements, and marijuana didn’t work for me, they help many achieve remission.
The choice isn’t simple, but don’t let surgery scare you. It’s important that you make a logical decision so you can live the best life possible.
I would get surgery again 100 times if I had to. I had a bad experience (your surgery will likely be much easier) and I still highly recommend it.
Sometimes it almost feels like I’m dreaming. I almost didn’t remember what it’s like to live pain free or to have energy (even though I’m nowhere close to full energy, that is still to come!). I can literally stare at the wall and be happy. There are times when I can’t stop smiling.
I feel for your everyone out there. I know UC can be horrendous, but there’s hope – whether through surgery or treatment.
Ask your questions below and I’ll answer to the best of my ability. You can also email me at firstname.lastname@example.org or message me on Twitter. Keep fighting!
Medications & Supplements Tried:
Everything listed failed. Some helped a little. Prednisone is the exception but side effects were horrendous and didn’t work very well the third time.
Asacol (may have caused acute pancreatitis)
Supplements (too many to list – includes glutamine, fish oil, vitamin D megadose, digestive enzymes betaine HCL, VSL)
SCD elimination diet
Myers way diet + supplements
written by Jake
submitted in the colitis venting area