First off, let me just say that to hear and read the stories of others on this site is truly amazing. For those who live daily with the fear, shame, and frustration of dealing with the Big O, you have my undying respect. It goes without mention that many of you have had to deal with even more terrible health issues like "C", and there is no easy way to deal with that.
I ended up here just this past month, after a trip to the hospital with some really weird stuff going on in my body. About September/October 2011, I was diagnosed with diverticulitis. Put on antibiotics and anti-spasmodics... all refillable. Thing was, the symptoms never truly went away. I took to routinely feeding my body Advil (800 mg at a time) and refilling my prescriptions as necessary.
After a colonoscopy in November, I was told, yes, diverticulitis is present, no big deal, get another scope in 3 years. Whoopee! Life is good. Right.
So there were occasional cramps that hit me in the gut as hard as a brick. Knock you to your knees type pain. Had to have my 9-year-old daughter help me up sometimes. And female companions getting close? Difficult at best. All this, plus constant trips to the potty. I must've spent a good 25% of my days on the toilet. Thank goodness for smartphones and sterile wipes.
In March of this year ('12), a dramatic flare-up reoccurred. One that could not be ignored. I went back on antibiotics & anti-spasmodics. To no avail, things kept getting worse. Pounding Advil daily to fight off fever and pain, I began to develop a baseball-sized lump just above my left hip bone. Thought it was just a diverticulum poking out of my body. Even weirder, I started to see cloudy and strange solid material in my urine. Other than having to limp around my colleagues and my customers' offices doubled over in pain, I thought I might actually get better. Right again.
Not to be duped by what my fit, 220 lb body would do to me, I did some research. Everything seemed to point to a fistula between my bladder and colon. If so, surgery was unavoidable. Sh*t, this wasn't supposed to happen at my age.
After 3 days of living like this, my father drove me to the Emergency Room. The ER docs confirmed yes, diverticulitis, and YES, most likely a fistula. As a special bonus, they also found an abscess that was about to rupture - hence the baseball above my hip bone. I was admitted immediately.
The first morning after I was admitted, I was wheeled down to a CT scanner where a kind doctor positioned the camera right above my abscess, poked it with an 8" long needle, and started draining it. I laid in the hospital with a pretty IV tree and a PCA (patient-controlled analgesic - morphine) over Easter Weekend. Surgery to repair the diverticulitis and the fistula was scheduled for Monday. The friendly surgeon wanted the weekend so my colon could "rest." If everything calmed down by Monday, he would cut out the bad stuff, repair my bladder, and fix me on the spot. If it didn't look so good, I was going to end up with a temporary bag. He gave me a 50/50 chance of ending up all fixed up and no bag. You're all pretty smart and know how the coin flip ended for me.
While waiting for surgery on Monday morning, sitting with my father, I told him that if the doc was gonna fit me with "the bag," to tell him to just let me die. Tell my kids I loved them but there was NO WAY IN HELL I was going to live like that, even temporarily. After a few chuckles from him and a reality check, I realized that's actually a pretty stupid way to think and behave. I realize how even more foolish those thoughts are after reading some of your stories. Anyways, it was all left to fate after the friendly Asian Anesthesiologist (sp?) said, "OK, now you go to sleep."
I awoke 3 hours later and immediately felt my left side. Yep, I had been bagged. But what was weird was that I had an immediate acceptance of the situation. I don't know what changed my mind (some would ascribe it to God, Angels, or some higher power - but I'm an atheist), but somehow I came to peace and decided to live with it as best I could. I had been given a temporary colostomy, but I was alive and free of diverticulitis, the abscess, and had my bladder repaired. Life was, mostly good, and about to move forward.
For the next week in the hospital, I used my little BlackBerry to POUR through websites and info on handling The Accursed Poo Bag. What I did decide was that I was going to irrigate so as not to have to deal with the bag every day. I was released back to society 11 days after I first went in. I was confused but accepting of my fate with the colostomy. At the time I left the hospital, my surgeon said I would have it for 6 months. I swallowed hard and did my best to accept it.
So far, irrigation has been the savior of my sanity in this condition. For those of you that have lower bowel colostomies and CAN irrigate, we are truly a fortunate bunch. I lost sleep waiting for the Irrigation Kit to arrive at my house. But when it did, what a dramatic change and improvement to daily life. Gone were the phantom bad smells throughout the day, the drainage, discomfort, and inability to properly fit my pants. I now wear a cap around town during the day, and irrigate as soon as I wake up every morning. Yes, I have had my fair share of (now) comical sleeve dumps on the bathroom floor, late returns, and infusion cramps, but overall the irrigation has been a lifesaver. If you can do it, I cannot recommend it highly enough.
Just last week (April 25) I was informed by my surgeon's office that after some consideration, they were going to send me for a barium enema within 2 weeks to see if my lower bowel had healed enough to reconnect to the rest of the piping. He felt my age and overall health would allow the possibility of an early reversal. So now I am almost euphoric with hope of returning to a normal life in the coming month.
If this all goes as I hope, I am actually grateful to have had an opportunity to learn how those with an ostomy live, and to have lived as one for a short time. I have a newfound respect for people in this condition. To live with cancer and survive is truly heroic. To survive life - some for decades - with an ostomy is no small feat. As I said above, I wish you all the best in your lives. You have my undying respect and admiration.