Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Hi @1228angela @nythriver @manveen @dawn_giacabazi @hatethis @soul and @kidbjp, I'd like to invite you to this new discussion group about ostomy. People who have recently had an ostomy have many questions. I'm hoping that you can share your experiences to help us get the conversation started and make people feel welcome talking about adapting to life after a colostomy, ileostomy or urostomy. Share your story.

I have had an ileostomy since 1967. Cause, Ulcerative Colitis. Lots of positive changes and developments in surgery, care and appliances since then. When I had my surgery there was very little help available. Appliances were terrible and ostomy care was practically non-existent. Todays ostomy appliance and equipment suppliers are more than willing to help new and old ostomy patients. In fact many of them have ostomy nurses on staff to help with treatment and questions. What a difference 50 years makes.

Welcome to Connect, @hanseron,

Thank you for sharing your insights; we're so glad you've joined this group. I can only imagine the worries and questions you must have had, adapting to life after the ileostomy.

@hanseron, I've read that there are several types of Ileostomies; may I ask what type of of procedure you had to undergo? What was your biggest worry, when you got the ileostomy?

Total Colectomy.  The attack happened so fast that I didn’t have time to worry.  I was rushed to the hospital and surgery was performed within hours.  Luckily, I had a great GI surgeon who had previously performed the operation successfully.

 I was in the hospital for about 3-4 weeks and at home recovering for at least a month and a half.

Hi Colleen, hope you are well. it has been ages but I feel like just yesterday what happened to my mother. My mother had rectum cancer and she had a critical long surgery using laparoscopic early (March) 2016. The first surgery took for 7 hours. She was living with colostomy for a few weeks carrying bag. I and my sis were the care givers. Learning to clean the bag for my mother. Learning to attach when the bag was broken. We had gone through up and down depending on how she was doing. But we made it through her second surgery Completion and then no need to bother with the bag. We were able to find the good doctor from Thailand who came to practice at Mayo clinic in the United States. The doctor and the team are on top of everything. They work as a team like Mayo clinic doctors. The knowledge, the advanced medical equipments and great experience. We have been very fortunate. My sis and I took turn taking care of my mother during her surgery and her stay at the hospital for 3 weeks. She is now recovering well from the rectal cancer but early this year my mother had entire body scan and the doctors found nothing. Good news and great report. We had a good time, a bad time and challenging time together but we have hope and believe in our faith that my mother would be getting better. So I encourage for those care givers, keep up with the hope and strength, positive, a lot of care, patience, love, kindness, support and follow up. There are the qualification of the caregiver. We are grateful to Mayo Clinic for having and for accepting Oversea doctor to come and practice with Mayo clinic Doctor. Our thanks goes to Mayo clinic for saving so many people life including my mother. It is nice to be with you on line and kindly share with every care givers. It is appreciated. Thank you. Best to you and everyone. Soul

@soul

What a wonderful report - I'm so glad that you shared it with us!

Teresa

Good to hear from you @soul. What a remarkable outcome for your mom and your family. If I recall correctly, at the time of diagnosis, your mother was very nervous about having surgery.

At the time of the first surgery, did you know that the colostomy was going to be temporary? Did you learn any tips about colostomy care that you might like to share?

It is true, Colleen. My mother was nervous and did not want the surgery. It was a lot of discussion back and forth with the doctor and my Mother had confirmed with the doctor that the colostomy care would be a temporary and decided the date for the second surgery to remove the bag and close the stoma. It was only 10 days Difference between the first and second surgery. During colostomy care, the hospital provided the 2 specialist for the colostomy care. They came to clean the bag for 5 days and taught us how to change the bag and clean. So my son s and I had to work on it. We learned so much from it. One night, my Mother bag was broken and we had to struggle to attach the new bag. But if you have learned from specialist and learned the technic how to cut the bag, it is easy.
When I recalled the time we were there it is a rewarding experience since my mother is recovering well. It is truly blessings.

Dear Teresa, I am glad to share with everyone. Sharing experience is the best we can improve a better support and care to love one since we are the care givers. Thank you.

Deneenknox