Thinking Surgery

Today, I’m thinking surgery.  A week ago, I wasn’t.  As I’ve noted before, life has been pretty good of late. I’m feeling well. I eat what I want. I’m off of all meds. And life with the bag is manageable.  Most of the time. But when life with the bag is not manageable, taking another crack at the takedown surgery looks better and better.  That’s where I’m at today.

After months of having no issues with my ileostomy, I’ve had two within week.  Last week, I was out at lunch with some friends, having a good time, when I felt a few drops of warm liquid on my inner thigh. I felt down and, sure enough, there was some wetness around my ileostomy. Assuming it was just a leaky wafer, I figured I’d just head to the bathroom, clean up a bit, and head to my car to get my supplies to change it. No big deal. As I stood up, I quickly realized just how wrong I was, when the entire contents of my bag drained down my leg. It wasn’t a leaky wafer; it was a malfunctioning clip. I scurried to the bathroom. Disaster. I stripped down and tried to clean up as best I could, filling a trash can with soiled paper towels. But my pants were a lost cause, soaked through on the entire right leg. I texted my friends from the bathroom to make sure they could get a ride back to the office. They could, so I bolted out of the restaurant to my car, grabbed my emergency kit (left over from the pre-surgery days) of a towel and change of clothes, laid it on the front seat, and headed home to change.

In case it wasn’t clear from my description, it was a terrible and terrifying experience, though three things made it livable: (1) By the grace of G-d, there was not much odor to my bag’s contents, so I think I escaped from the restaurant largely unnoticed; (2) I still had the emergency kit my wife put together for me in the trunk of my car; and (3) I was with friends who I trusted and who have been supportive throughout this experience, so there was not any additional humiliation.  But it still sucked.  Big time.

Ever since that disaster, I’ve felt phantom leaks on my thighs.  I judged a law school Moot Court competition over the weekend and—paranoid of another incident—I double-clipped my bag.  Fortunately, no issues.  This morning, as I sat down at my desk at work, I felt some moisture on my leg.  Assuming it was just another phantom leak, I closed my door to check things out.  Full-on wafer blowout—nothing phantom about it. I caught it early and, but for the failed lock on the restroom door that allowed someone to walk in mid-appliance-change (sorry whoever that was), it wouldn’t have been a huge deal. But less than a week after the restaurant disaster, it felt like a pretty big deal.

And so now I’m thinking about surgery. Again. I really, really don’t want to do it. Post-takedown life was miserable last time and led to a horrible emergency surgery. But constantly worrying about springing a leak ain’t much fun either…

This entry was posted in Ileostomy, J-Pouch, Surgery, Ulcerative Colitis and tagged , , , . Bookmark the permalink.

8 Responses to Thinking Surgery

  1. Troy Kummer says:

    im so sorry you are going thru all this stuff ben. if you ever need to chat im only and instant message away

  2. Kore Miller says:

    Hey, you don’t know me at all–so this is probably weird and disconcerting…but I am a 39 year old female with your same story. My surgery was in 1999. I’ve enjoyed reading your blog, because it has reminded me a) how hard life was with uc. and b) how far I’ve come in life, and how much I enjoy life without uc. I hope you do go ahead with your take down and that it is successful this time. Thanks again for your blog–wishing you the best.

    • Ben says:

      Thanks for your note. It always makes me happy to hear that someone has found this site and, more importantly, is getting something from it. Thanks!

  3. John Casey says:

    We all wish you the best Ben.

  4. Pingback: Where Things Stand | Know Guts

  5. Dina says:

    did you reverse and get rid of the horrible illeostomy? I had surgery on 4/3 for UC and have the bag as I await my reversal surgery
    it’s been HELL! I failed the first dye test since I had a small leak internally and omg the ostomy site is a continual thorn in my side since its always leaking and inflamed!
    I HATE it!
    I hope you have your reversal and it’s a success

    • Ben says:

      Thanks, Dina. I’m scheduled for my second takedown on July 2, and really hope it works out this time. I feel your pain about the ileostomy — I’ve had this one since October. Even when it’s working well, I still hate because I’m constantly worried about the next leak etc. It’s a whole lot better than being sick with UC, but not something I’d want to live with forever if I had a choice. Which I do…

  6. Pingback: No More Hems and Haws | Know Guts

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