4 Years After J-Pouch Surgery; Was it Worth It?

I Can't Do This!

I won’t lie to you – July 18, 2008 was one of the hardest days of my life. No one just says remove my colon without thinking it over once or twice or a million times. I didn’t really have a decision to make because my surgery was an emergency surgery after I came in through the ER and was hospitalized and a colonoscopy couldn’t even be performed safely without risk of perforation because my colon was so inflamed.

I was told I needed to have surgery, not given the option. That doesn’t mean I didn’t think and re-think surgery every second of every minute leading up to it. I knew life would forever be different and I had no idea what the future had in store for me. I was going to live the rest of my life without my colon and rectum and I couldn’t wrap my brain around how crazy that was.

Was this really happening to me?

A Rough Start

There were a lot of issues with getting my pain down to a tolerable level in the recovery room but I don’t remember much of it; I only know based off what I’ve been told. Once they decided I could leave the recovery room and go back to my new hospital room on the surgery floor I couldn’t help repeating the words, I can’t do this over and over again in agonizing pain like it was some sort of mantra.

Not long after that the pain team was in my room and they determined the epidural they had me on had failed somehow. They tweaked my PCA and finally I was in better condition in regards to pain. I went into surgery in such poor condition that I’m certain my struggles post-op stemmed from that at least in part.

Post surgery with an NG tube. Puffy from a year of steroids but actually underweight. Taken on a 2008 cell phone before smart phones = crappy quality.

LIGHT AT THE END OF THE TUNNEL

If you’ve been a reader of this site for some time then you know how hard life was for me after my surgeries. There was no silver lining or light at the end of the tunnel at first. I had complication after complication and lived six months in the hospital. I withered away to 82 pounds and wore adult diapers because I lost control of my bowels at night for awhile after surgery. I was angry, fearful, and depressed. I yelled at everyone who came to visit me and I never turned on the lights in my hospital room because I didn’t even want to see the light. I thought my life was forever changed in the most negative ways possible.

If it weren’t for the tough love of my nurses I would have probably never showered, turned on the lights, or went outside. I had nurses who would take me on walks outside in a wheelchair, come into my room and do my hair for me, and one who gave me the verbal kick in the butt I needed and turned on my lights. They would tell me funny stories, bring me things they knew I liked, and would even decorate my rooms with leaves or other things they found outside to bring the outdoors in for me. I’m still in contact with many of them today because I was there for six months.

There were times I was in the ICU with a blood infection or in another emergency surgery. The nurses and my family were scared of losing me a few times. I came back to visit the year after I was released and many of them cried.

All that to say that it was hard in the beginning but actually the truth is that July 18th, 2008 changed my life in the most positive of ways, it’s just that it took awhile to get there.

I celebrated my first year colon removal anniversary at my first summer volunteering at Camp Oasis, a place that means more to me than words can express. I also celebrated year 2 and year 3 at camp, and this year I celebrate at home writing this having recently completed year 4 at Camp Oasis.

Had I not gone through my surgeries and everything that came afterward I would not be the person I am today. I wouldn’t have camp, I wouldn’t have this website, I wouldn’t have my job at the salon or my friends there; I wouldn’t be the Sara that I have become. Life has improved immensely without my colon. I am living and not just existing. Whoop!

A lot has changed in the last 4 years

Last year I found out that I actually have Crohn’s disease and not ulcerative colitis. This was after continuous struggle until a 6 week hospital stay last summer. I was put back on medications and that has helped me. I still have a fear of an unknown future that has the potential of even more surgeries or complications but I’m working on letting go of that fear and finding healthy ways of coping with it.

What I learned from everything that happened 4 years ago is that I am a lot stronger than I thought and that even when it seems like there is no hope or potential to get better that there is usually a light at the end of the tunnel and it will come eventually.

If you’re sitting there reading this and you’re in a position where you doubt the future or that things can get better please keep hanging on. There is not a day that goes by that I look back and wish I still had my colon. That thing was on the hot mess express and needed to come out. I still have times where things get difficult health-wise with my IBD but they have never been as bad as when I had my colon.

Sara

Update

This post was edited on 7/19/2019 for appearance, grammar, and clarity, as I transfer my site from Tumblr to WordPress and rebrand Inflamed & Untamed.

Since this post was written and I sit here updating in 2019 I can still say I'm so happy with my Jpouch. My Crohn's has been well controlled lately but damage it did in the past is part of my life. My biggest health struggle is my motility disease which is a separate thing from IBD and not caused by it. That disease is very disabling for me and has progressed each year and I now have intestinal failure and am on TPN. Back when I wrote this I was in a better place with it.