Surviving Diverticulitis and a Fistula: My Journey with an Ostomy

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. Around September/October 2011, I was diagnosed with diverticulitis. I was put on antibiotics and anti-spasmodics... all refillable. The 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. They knocked you to your knees type of pain. I 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. I 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 lay 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. Anyway, 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.

Todd

Great read, Buzz. I was a bodybuilder for 32 years. In 2009, I was diagnosed with prostate cancer. Four months later, I was diagnosed with colon cancer. I was beyond devastated because I looked after myself my whole life. I had a temporary bag for nine months, then got it reversed in June 2010. I still work out three days a week and curl a 130 lb. car axle for fun. Life is so precious, buddy. You seem like a real fighter, so I wish you the best. We all have gone through our private hells. Sometimes my mind goes back to my bad times with radiation, chemo, and diapers. I was groomed for a Golden Gloves boxing career until my dad died at 49. I had to work in a paper mill to support my mother, brother, and sister. Remember what Vince Lombardi said, Buzz. When the going gets rough, the rough get going. I never forgot that. No matter what, my friend, someone always has it worse than us, so be thankful for your progress. Stay positive, my friend. Keep those endorphins going. Zeppo.

You have almost won the battle. Long live the king.

Hi Buzz, I enjoyed your story of courage. Your approach on the whole situation is inspirational. It truly isn't about us, it is all about our children and other family members that need us, they are truly our strength and our reason for living. Good luck on your journey.

Thank you, dear friends, for your words of kindness. It is the love and support of friends, family, and sometimes even complete strangers like yourselves that keep my spirits up and the will to win alive inside. I can only hope that others help you as much as you help me.

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Well told and another wonderful success story. I had a similar temporary colostomy but for just over a year and had a reversal two months ago. Just having a few problems now with recurrence of the original problem, but still remaining positive. Just a word of advice about the barium enema........you might want to bring a bag or two along with you as it doesn't take long for the liquid to run through!!! :-) So very best of luck and stay positive!! Take care, Colm

Wow Buzz, that was very well presented. I want all you've been through, are going through, and will tackle in the future to be chalked up to a lifelong learning experience. You are truly in someone's address book; in other words, someone has your number! All good things in life are worth fighting for, some a little harder than others. I tend to tire easier as I get older. I'm a 'permanent O'! But when I too see and hear what others have been through, are going through, and will continue to go through, my heart bleeds, but it also swells with pride knowing that so many take the fall and just keep going vertical again and again. So, with these words (by someone named Skidder), SPREAD THE SCOOP—NOT THE POOP, Buzz I hope all goes well for you in all that.

Sorry, I'm writing this in our RV headed to VA Beach! I was saying, I hope all goes well for you in all you do. Life is good, live a great one... IMAGINE

Hello Buzz, good to read your account of your past medical situation and inasmuch as you compliment us who live with a stoma. We don't have any choice in the matter. So, we have to accept it and get on with living with it. Most of us are not so brave in the beginning; we are too busy trying to work the whole thing out in our heads right from day one. Pleased to read that you are waiting for your reversal now, always good to hear one less dealing with a stoma. You say you hope to return to a normal life. For us, living with a stoma is a normal life. Gee.

Hi Buzz, very interesting reading on how you're accepting your colostomy. It seems you've had your fill of problems too. Thank you for your admiration for others, such as me, in understanding those who have an ostomy permanently. I wish you a great future in your reversal and return to normal. Good luck! TC, Ambies.

Say Buzz, I have a simple question, with irrigation what do you wear over your stoma?

Jake: I use a 2-piece Convatec system. An appliance called a wafer fits over the stoma. The wafer is just a plastic snap ring (think: Tupperware) with a sticky backing that I think is made out of pectin. You cut a hole in the backing to fit your stoma and stick the wafer right on your body. If you're used to a 2-piece bag system, you'll know all about this. Once the wafer's fitted, you just attach an extra-long bag called a sleeve to the ring. There's a clamp at the bottom of the sleeve to keep everything locked in (and make sure that it's locked... speaking from experience). You can do a search on YouTube for colostomy irrigation and there are a couple of helpful videos that show how it's done live. Once you do it and get it right, you'll never go back to bags (unless you have to!). I can now wear a thing called an AmPatch over my stoma that just looks like a big oval bandaid. No more bags!

:D Hi Todd! I'm glad that you're doing well and I hope that the reversal comes soon and works well for you. I'm also very glad to know that you have come to accept the ostomy and not let it bug you, either. :) That's great! Best of luck to you and we're always around if you need to talk. :D

Buzz, I am so glad you learned that it is possible to live with an ostomy, and it sounds like your quality of life actually improved. Thanks for sharing. I'd love to have your story in the book my ostomy group is putting together. If you'd consider that, we have information for submission on our web page: https://sites.google.com/site/hernandoostomyassociation/home/dark-side-or-far-side-of-the-moon. Lots of health and happiness in the future!

Hi Buzz - I appreciate and thank you for your shout out for irrigating. I've been irrigating for about 2 years now, every morning. Many folks with a sigmoid or descending colostomy are candidates for irrigation, but never get the info or are fearful of the procedure. Your story is an inspiring one, in light of the nearly universal first reaction "I'd rather die than wear a bag" among men. (Having worked in health care for 25 years, I heard it constantly - probably even thought it myself until I faced the "do or die" situation!) I agree with other posters here that you are so articulate, I'd like to see you write up your story and get it published (say in Phoenix magazine for example, or Men's Health.) Best of success in your future endeavors! :)

Buzz, hope it all works out for you. I battled UC for 5 years before finally having my colon removed in 2005. I was devastated. Fortunately, I knew about an alternative to the bag. I have a BCIR. No bag and I live an extremely normal life. I wish you the best, but please know that there are other options! Good luck!

Buzz, would you consider submitting your story to the book which my ostomy support group is compiling? Read about the project at https://sites.google.com/site/hernandoostomyassociation/home/dark-side-or-far-side-of-the-moon. We welcome stories from all ostomates.

Buzz, I just firmly believe that how we see ourselves is how others accept us, and this is so true for me. I believe I am just fine, and if others don't, oh well, many will and do. I have a stoma, but to me, it is just a different way for me than the normal. Yet virtually the same. I know I will always believe in me and send off positive vibes. I wish more were like me. I can never tell if someone has a stoma unless they tell me. I would never care. Love comes because of the person, not their stomas, or should I say their difference in where they eliminate their waste. As long as we care for ourselves and we are clean in all areas, it will never matter to the wise. -kt