Patient Comments: Colostomy - Day to Day

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

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!

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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!

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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.

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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.

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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.

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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.

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