Patient Comments: Colostomy - Day to Day


Do you have a colostomy? What are your tips for dealing with it day to day? Submit Your Comment

Comment from: Maresidotes, 65-74 Female (Patient) Published: June 05

I had emergency surgery on 5/11/18 after trying to heal the infection with multiple antibiotics. I'm lucky enough to have a temporary colostomy and am looking forward to the reversal surgery in around 3 months. I'm having a hard time changing the bag on my own and had a bit of a meltdown last night. The bag remains empty of stool for the past 7 hours, and I hope this isn't going to be an issue. I'm surprised at how I've adapted to my new reality and am pretty good most of the time. I haven't driven my car yet, but may try that tomorrow. We'll see. I had the staples removed a few days ago, but my sister in law who is also a nurse drove me. She was my loving, generous caretaker for two weeks! Maybe I should try another type of bag, but am feeling a bit overwhelmed. I'm so grateful to be alive, as I was very close to not making it. I'll try to maintain a better sense of humor going forward, and ask for help sooner from now on.

Comment from: Dee, 55-64 Female (Patient) Published: May 13

I had a colostomy on 9/19/14 due to diverticulitis. The pain was so excruciating it was the only alternative. I truly agree with having a sense of humor about it! It has now been 6 months and I am having a reversal in a few weeks! It really hasn't been that bad and it definitely beats all the pain! Try the Sensura Mio Clip products along with the Adapt gel lubricant. It worked very well for me and nobody ever could tell I had a bag. I will bid a happy farewell to 'my pet' as I called it! And I always thought there are worse things that could have happened to me, so look on the bright side if you are going to have a reversal! Life can only get better! Good Luck to all of you who are going through this, it will get better! Be well, and keep that sense of humor!

Comment from: Christel, 55-64 Female (Patient) Published: September 10

Have supplies all over, at home, in your car and at work. You never know when you need to change the bag or the whole appliance too. I have an extra underwear and slacks in my trunk at all times and extra pair of underwear at work also. I have had my colostomy since 4/28/2008 due to diverticulitis. Good luck to everyone!

Comment from: superm, 65-74 Female (Patient) Published: March 04

On 12/13/13 I woke up with the worst stomach ache I had ever had. I went to work and had to leave due to the pain. On 12/24/13 the doctors had no choice but to give me a temporary colostomy. The first weeks were hard because of the wrong bag. Thanks to an amazing young man at Coloplast and an amazing nurse, I found the correct bag. The best advice I got was to drink tons of water. I also really watch that I get enough vegetables and fruit. I keep a sense of humor, as my doctor said "poop is what it’s about, even fleas poop". I am an extremely active, fit 66 year old. My diet has always been amazing, so for diverticulitis to occur was unthinkable. Yes, I did have a pity party, but thought I still have my eyes, legs, etc., and I"m going to live. Best of luck.

Comment from: theresa220, 45-54 Female (Patient) Published: March 04

I had emergency surgery on 12/23/13 and they removed part of my colon due to diverticulitis. My reversal surgery is supposed to be scheduled soon, they told me 8 weeks to 3 months I had to wait. It has been so hard dealing with a colostomy bag and I would not wish this on anyone. I had to go back to the emergency room because my skin was retracting from my stoma causing bleeding. I cannot wait for the reversal so my life can get back to normal. I have lost 25 lbs and I hope I continue to lose more weight because I am overweight. But I look at this as a life changing event and I have learned to cook light and eat better. Good Luck to anyone out there that has to go through this experience.

Comment from: Nettie, 65-74 Female (Patient) Published: May 09

My colon ruptured 7 months ago due to an abscessed diverticula. I had been taking a little morphine for my arthritis and I believe that the subsequent constipation contributed. I got off the medication. Colostomy was the most painful surgery (I have had 24) I had ever had. I have pain problems because of a genetic deficiency of a metabolic enzyme (CYP2D6), rendering most pain medications useless. As an American living in Mexico I chose to have the reversal here and it all went off without a hitch. My pain was well controlled with a catheter in my back (I doubt the US would have given me that). The pain was almost as excruciating as the original surgery, but did not last nearly as many days. An allergy to adhesives prompted me to have the reversal earlier than planned at 3 and 1/2 months. All went well and I am happy to say that there were no complications. I guess the colostomy saved my life, but glad to be rid of the allergy. Success can happen and we can get well.

Comment from: Ocsmity, 45-54 Female (Patient) Published: January 05

I had my colostomy reversal November 2011. About 2 years ago, I started to get these spasms at the ostomy site. It feels almost muscular, like something is twisting. It usually happens when I sit up suddenly from lying down position. If I massage the area for a moment it goes away. It is not extremely painful, just really intense.

Comment from: Not so bad, 55-64 Female (Patient) Published: December 06

I had dead gut and required emergency surgery. I woke up with a colostomy in ICU. The surgeon saved my life, so when you almost die a colostomy isn't such a bad thing. The visiting nurse was surprised at how quickly I learned to take care of it myself. I occasionally had a couple of problems, but no big deal. A year later I had a reversal. I am still recuperating from that, but it's going ok. Some people act like a colostomy is the end of the world, it is not; it is a tool to enable you to live and thank goodness for that.


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Comment from: Mike s., 45-54 Male (Patient) Published: December 01

I had a colostomy in 1979 at the age of 14. I am now in my 50s. I have led a full life with no problems. I have taken part in many sporting activities. I played rugby in my early days and I also did some scuba diving. I now play golf most weekends. Anything is possible don't let it affect what you can do.

Comment from: 19-24 Male (Patient) Published: March 26

I had a colostomy on my right side. I suffered a gunshot wound on 2012, and I was done a colostomy due to perforated bowel injuries I suffered. Right now I have decided to reverse but my doctor refuses, I think there is something he is not telling me. I am really stressed about the issue.

Comment from: Neenwalk, 65-74 Female (Patient) Published: February 24

I ended up in hospital in septic shock to lose 3/4ths of my large bowel one hour after making it to the emergency room. I needed to be coded 2 times and 7 weeks in hospital, I am so lucky to be here! A colostomy was not anything I ever wanted, but I am alive, to have my reversal in 5 days, 4 months after my colostomy. Why I am still here no one can understand, just lucky. What worked for me was I made friends with my colostomy, bags and all; reminding myself that I am still alive and so much more life to live, that I can now live. What a gift life is.


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