Ostomy: Adapting to life after colostomy, ileostomy or urostomy

@dideon Two things my husband has found help with the irritation. Milk of magnesia on the affected tissue and the best one -- Nasacort nasal spray. Be sure to dry with the hair dryer before attaching pouch. We wish you well and hope you find a solution.

As I said in my comment, it's the bad rash I'm dealing with now. I also have three hernias resulting from the three surgeries.

I know what you mean about diverticulitis . I have had that since I started chemo. That is the worse pain !! I had a ileosohy done because they said that would help the pain! Now they old me to get my affairs in order .
No idea if they will try doing chemo in the next 2 weeks or not ,
I want to live but by the sounds of it have I no choices anymore !
Good luck with your pain snd hope you do really well with the colonoscopy . That will help I am sure ,

I have gone through many things, but my biggest challenge has been dealing with a bad stoma rash. I have been to stoma nurses and have tried many things to try to heal it, but nothing has worked. It will be okay for awhile, then it flares up again and it is very painful.

Hi Dideon, welcome. I can't imagine things moving so fast. Thank goodness you were able to get to emergency surgery.

I'd like to introduce you to @msgtrebholtz @engelee @hodagwi and all the fellow ostomates.

Dideon, with such a sudden change, what did you find to be the most challenging adjustment? Six years since, what are you able to today that you didn't think would be possible?

I have a colostomy. Diverticulitis. I didn't even know I had it. I never even heard of it, but on the night of Nov.4th, 2015, I woke up so sick, lost total control of my bowels. I thought I was dying. I called 911 and had emergency surgery.

@jlind12, I'm wondering what you decided? Did you talk with your health care team about getting a colostomy?

I had an ileostomy in 2003/04 then had the reversal surgery. I am now contemplating having a colostomy surgery because I am currently spending so much time in the bathroom. I suffer from constant constipation which results in diarrhea which causes bladder infections, etc. I'm interested in finding out if I'm only jumping from the fire into the fry pan or if this will be a solution.

I don’t know why all the people getting a variety of ostomies aren’t using this good connection. I have 2 ostomies and a Hartman’s pouch. In fact I’ve had an ostomy since age 5 ( long time ago) . Born with extrophy of bladder, ( bladder exposed on abdomen. The docs removed my bladder, and put both ureters in the sigmoid colon. So all excrement came out the rectum mixed together. Many diet restrictions ( 0 salt diet) for 69 years. My blood work was always abnormal . After my MD at KU retired, I went to Mayo and have Dr. Igor Frank, my idea of the man who has given me excellent care. I developed a perforated diverticula and abbess he told me it was necessary to get 2 ostomies. He and Dr. Heidi Nelson ( former head of colorectal surgery) did an 8 hour surgery. Now, 6 years later, my life is different and needs adjustment according to minor problems—mostly diet. I am active in community, know my limits, always prepare for emergency when out, but have learned to enjoy the pleasure of friends, walks, books and above all God. I get discouraged at times, but I’m also aging. I attend an ostomy group here at home, got to Mayo’s every August for various scopes and feel extremely well attended. Dr. Frank kept me going to the point I am longest living person in Mayo history with ureterosigmoidostomy. I think everybody with an ostomy has their own experience and tips and I would like to hear from them.

I appreciate your kind words Colleen.

As a kid, and when I was in the military I always loved to run. For about 8 years that was nearly impossible. Unfortunately I never figured out how to carry a port-a-potty on my back so I was stuck inside. Treadmills are great if it is raining or snowing, but nothing beats being out on the road.

When I was in the hospital in the summer of 2017 I told myself that as soon as I was able I was going to start running again. It was a slow go at the beginning. Lots of setbacks with trying to figure out a good bag set up, then figuring out a good way to secure the bag and make sure I didn't pull the bag off or end up with a hernia.

I set my sights on 5k's to start, and in 2018-19 I ran about 20 of them. I am running 8-10k on a pretty consistent basis now and am running in several virtual events while everything is shut down.

My goal is the Earth Day 1/2 marathon next spring in St Cloud, MN. I would also love to go down to Jacksonville, Florida for the river run 15K one of these years. When I was stationed there in the 90's I ran it twice and it would be a great way to feel like I have come full circle.

There are so many other things. I love to hike and go on long walks with my dog. We Went to the black hills in 2018 for a week and hiked over a 100 miles. It was great! Just think about the new found time that used to be spent in the bathroom! The last few weeks before my surgery I was going over 30 times a day!! Im free!

If anyone has questions, or needs help with anything please ask. I have gotten myself through a lot of situations by trial and error and if you can learn from my mistakes and the goofy MacGyver tricks I have figured out, then that is one less painful day you have.

Thanks again for allowing me to hang out with the group. I look forward to helping and learning for all.