Embracing Acceptance: My Journey with a Colostomy

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moonperro
Aug 12, 2014 9:02 pm

I was at my dentist today getting a new crown. As he was injecting me with the anesthetic, I started to feel something warm on my side. My first thought was that the assistant had spilled some water on me but very quickly realized my bag was leaking, and leaking bad. My very first public spill and I had two people hovering over me very closely as it was happening!! I lifted my hand and told them to stop and said what was going on. My dentist, whom I like a lot, jumped out of his chair and sped to the door, standing there watching apprehensively. I thought that was kind of odd. His assistant was very sympathetic and asked what he could do to help. I asked for a towel and cleaned myself off as best I could and told them I would make another appointment. The assistant followed me out and opened the door for me saying that they will call to make another appointment.

Driving home I thought about what had just happened and more importantly, what was my reaction. Obviously, my dentist was not very sensitive but his assistant definitely was. Thinking further I was VERY surprised that I was NOT embarrassed, mortified or ashamed!! I felt absolutely fine and then I realized that this feeling was a first for me since my surgery to have the colostomy.

I fought like hell against having a colostomy. I had had a nasty bout with anal cancer in 2005. Before treatment, my oncologist told me that there is a 50% chance of me ending up with a colostomy. I said not me!! I have a good friend who had the same cancer and 15 years later he was fine. So he was my role model. But unfortunately for the next 7 years I had ongoing incontinence and debilitating and very painful constipation and it was not getting any better. In Jan 2012, I finally said "enough" and had the surgery. From that first day forward I have not had any physical problems, no pain or anything so the surgery was really beneficial for me. But I did feel shame and embarrassment about living with the pouch in spite of feeling so much better. It affected me deeply, isolating me and keeping me from some of the joys of life. As time has gone by those feelings have lessened somewhat but with the incident today, I can say conclusively, I have finally accepted my situation and it will no longer keep me down, isolated, embarrassed or anything!! And I *still* have the rest of my life!! Today was a very important day for me. Thanks for listening. Terence

Primeboy
Aug 13, 2014 2:41 am

Thank you for sharing your story, Terrence. What an epiphany! I agree there's no need for shame or embarrassment when you do whatever it takes to live a good and productive life. May we all be so accepting of our human conditions. PB

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survivor48
Aug 13, 2014 11:48 am

Proud of the way you handled the situation but I do have one question.....did you change dentists? LOL It is funny how a professional person can act, isn't it.

GraphX12
Aug 13, 2014 12:35 pm

So glad you have reached this milestone, Terence! I fought having my ileostomy for years. Diagnosed with UC 20 some odd years ago, I thought I would rather lose a leg than have the dreaded surgery. I did quite well with the UC for a number of years until I finally contracted C. diff (which I'm convinced was introduced into me through unclean equipment during a routine colonoscopy) that went undiagnosed for 4 weeks. Doctor kept telling me just another flare-up. Long story short, I ended up at the Mayo Clinic after losing 70 lbs. to have an emergency, life-saving ileostomy. But what I saw while at the Mayo Clinic really helps me in my day-to-day woe is me feelings. I saw hundreds of little kids dying of cancer. This made such a profound impact on me that as soon as I start feeling a little down or self-conscious, I see the faces of those poor kids that haven't even had a chance to start life yet. Immediately, I realize there is NOTHING wrong with me! Doug

Past Member
Aug 13, 2014 2:21 pm

Thank you so much for sharing! I'm on the verge of getting a colostomy after ten years of debilitating incontinence from a partial spinal injury and horrible diarrhea (gallbladder or pancreas plus systemic candida). Anyway, I hardly ever leave the house and feel like I'm sitting on the sidelines of life. I can't get the surgery until my diarrhea is better as my surgeon said it's better not to have liquid stools shooting into the bag. But even in preparing my GI for it, I've been getting more and more depressed...to the point of turning nasty on my loved ones. So again, thank you for sharing. I guess none of us want to be here but stories like yours give hope that there's a way to adapt. I hope your dentist has matured from the experience...thanks again for sharing!

 
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vikinga
Aug 13, 2014 5:19 pm

Moonperro, I also had my surgery in 2012 (ileostomy). I've had one blowout in the cellphone store that I was able to get home and take care of, but of course, unsettling. No one really knew except me and my unruffled boyfriend. But Monday this week, I was almost through with my acupuncture treatment when I suddenly blew. I was so glad I had my emergency pouch with me. It was my first changeout while out and about. Being an hour from my home, I was grateful for the kit. My acupuncturist's mom had a colostomy, so she wasn't unfamiliar, but she quickly left the room after removing the needles. :)

Sandywr
Aug 13, 2014 5:57 pm

What I hate is when you tell a friend and they say, "I could never do that." I tell them if they had to, then they would.

WAB
Aug 13, 2014 6:46 pm

Wow, I think you can say you changed the life of your dentist also... could have been funny... I do not know why, but when I read your blog, I kept thinking of the Carol Burnett show... where Tim Conway and Harvey what is his name... were in the hilarious Dentist sketch... Anyone remember that... well, maybe I am too old... lol... it was hilarious... But I could see you there... in the dentist chair, your mouth frozen, unable to speak... your bag explodes... you tried to speak, but it was gibberish... and the poor dentist was covered in shit... it could have been funny... I would have loved to see the look on your dentist's face... it could have been funny...

moonperro
Aug 15, 2014 5:39 am

I want to thank all those who commented on my post. Your reactions were just what I needed and I so much appreciate it. I do want to respond directly to a couple of you.

GraphX12 - Your story really moved me. I can see so easily where you are coming from with that experience you had in the Mayo Clinic. Your story can be important for anyone facing a physical challenge. I appreciate your writing.

Hikergirl - I wish you so much luck in your journey. I know that during those years after my cancer treatment but before my ostomy surgery, I was not the easiest to be around. I hope you can give yourself a break and not be too hard on yourself. Your feelings are very understandable.

With love, Terence.

veejay
Aug 16, 2014 10:51 pm

Terence, if you have a colostomy as you say, my advice would be to find out as much as you can about irrigation. Something you should have been told about a long time ago. Doesn't work with ileostomy. Once you have mastered irrigation, you will never have another dentist chair episode ever again. P.S. I do admire your handling of an awkward situation. VJ.

WAB
Aug 17, 2014 7:18 am

Terrence... I agree with Veejay... It's time you check out irrigation... As you have a colostomy... And if you irrigate, you will never have another episode again and it will set you free... I have been doing it for 13 years... Believe me... It will set you free... And you will not notice you are wearing a bag... It is simple to do... The kits are available from Coloplast... I can go 3 days and not pass any stool... Your intestines will get used to irrigating and wait for it... Please check it out... What I find strange is doctors and stoma nurses do not tell you about irrigation... I had to do the research myself to find out about it...

moonperro
Aug 24, 2014 7:41 pm

Hello Veejay and WAB,

Thanks so much for the encouragement to look into irrigation. I was told about it at the time of surgery, and they also said I was a very good candidate for irrigation. But, I am sure that all of you know when this all happens to you, your head is spinning and you don't know which way is up for quite a while. At least that was how it was for me. So for some reason, irrigation sort of faded away for me. But I will call my stoma nurse and make an appointment to really talk about it. Thanks again to everyone who has commented.

WAB
Aug 24, 2014 10:39 pm

Hi Terrence. Good for you, go and check. If you need any information, I can give you some tips. I travel, take cruises, travel in my motorhome, go to restaurants, and do not worry about it. Plus, there is sex. LOL. It is going to set you free if you are a candidate for it. If you need some tips, just ask. I have it down pat and there are ways to do it. Good luck to you.

GraphX12
Aug 25, 2014 2:28 am

Terrence, I know exactly what you mean about the head spinning! My ileostomy surgery was exactly 1 week from my first exam at the Mayo Clinic. What I thought would be a day or two of exams turned into a week because of the seriousness of my situation. Talk about a head spin! I couldn't begin to absorb everything that was going on around me. Thank goodness my wife was there to document everything. I don't know anything about irrigation - I'm going to have to research this (just for my own curiosity). I had a complete, irreversible ileostomy and didn't really have any other options. Best of luck to you, Terrence. I know things will work out for you. Doug

Past Member
Oct 17, 2015 4:14 pm

Good for you, Moon. I had my almost identical epiphany and an almost identical reaction. My eye-opener came at San Francisco Airport in the TSA security line. Surrounded by hundreds of people and the few standing beside me, the entire contents poured down the leg of my pants! I stuffed my pants in my socks, grabbed my Go Bag (always present in my backpack), and ran to the toilet. I was fully changed, all clothes in the bin, in about 15 minutes. That was when I realized that I could handle this thing in public. I have almost never worried about leaks again and had almost none. I had seen the worst and survived. I tape my wafer a little more before flying, I tape the Velcro opening at the bottom, just in case! I eat as little as possible in a potential leaky situation, but I do eat airline food. In a pinch, it's not really that bad. On my recent flight from SF to DC, I ate a wonderful toasted pastrami cheese sandwich from the airport joint, opened the top buttons of my pants, and waited for the toilet rush to end. I had a middle seat, but that was okay too. Stay calm when many would not...that is the secret to a stress-free ostomy life...and of course, the item that prevents leaks before they happen...Micropore surgical tape, the 3M brand works best for me...it gives you time to react to a potential leak and stop it before it starts. Not worrying anymore provides an enormous sense of relief and comfort while traveling...or while sitting in my dentist's chair...no panic, just fix it and continue.

Mark1070
Oct 19, 2015 2:31 am

Moonperro, thanks for sharing. Perhaps the fear of this incident was worse than it actually occurring? Congrats, my friend. You are free once more!

Iriana 1
Apr 16, 2018 12:05 am

I cannot wait to feel the way you do! I am very happy for you.

Puppyluv56
May 25, 2019 8:40 pm

Hey moon! Loved your dentist story! It is exactly how we evolve from the victim to the victor! Shame your dentist was so insensitive to the issue.
Puppyluv

Jepson
Sep 06, 2020 2:19 am

Hi, so I'm 67 and I've had a colostomy urostomy since 35... Geez, I have so many stories! I did irrigate for years, but now, years and more surgeries later, it wouldn't work as I have a very short colon left. The good news is, I still ride my bicycle, motorcycle, and enjoy my pets... dogs, cat, horses, chickens, and such! I miss closeness with people, but between the virus and my issues, well, I deal with it! I've also had blowouts few and far between, but painful just the same. So nice to share stories... This is my first post, but I hope for friends to communicate with... It's priceless! Joni

Leapyr
Aug 14, 2022 9:31 pm

Enjoyed all your stories and suggestions. This is my 1st day home from the hospital after having a colostomy bag installed on Wed. Not sure what I am feeling. I'm a very social person but I already see me pushing my husband of 17 yrs away. Just because I can't go out, doesn't mean he shouldn't. He has been incredible. We aren't actually married and he has put up with some really difficult procedures that I have had to go through. Had to have all my teeth pulled 6 yrs ago because of a hereditary issue (and my smile was pretty good prior), it has taken me this long to learn how to eat again. Great diet plan. Just as I start eating again, I am introduced to my "new friend" Brutus, yes, I named him. He is ugly and talks too much. Can't wait to get back to work tomorrow but nervous about tomorrow, the next day and so on. I don't want to become a hermit and I am trying to not be self-conscious but how can you not. I am one that can approach, talk to anyone in a room....I'm afraid that person is going to disappear.