Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Anal cancer 6 years ago! Chemo etc! Ileostomy! Reconnection failed! Now colostomy! It prolapsed to 5” year ago! Now not even an inch! Had blood clots in both lungs twice! They said I should be in the ground! Spouse of 40 years passes while I was having surgery! Don’t remember how I survived by myself in 2 story house! Now having back problems! Had rods put in for nothing! So much scar tissue in abdomen, had to go into back! Neuropathy in both feet! Nothing has worked! Joined senior citizens for lunch everyday! Also 2 years ago joined dating sites to keep me from going crazy! Lot of lonely people out there! Am 68!

Hello, @wilcy Whew! A lot going on with you. How long have you had your colostomy? Are you accustomed to it and keep it working? You sound like someone with lots of energy! Have you ever thought of putting your energy into volunteer work? I’ll bet a lot of groups would your your energy!

I am fighting getting a colostomy bag. CTCA uses a system called Y90. Implanted radioactive pellets implanted in the tumor. My tumor is on the anus, so surgery to remove it is out of the question. Hopefully, I am a good candidate for this. I am, was very active. The bag would put a damper on my life style. I know people have them and prosper. But it scares the poop out of me. Hope God as my co-pilot will find an alternative to the bag.

I had ureterosigmoidostomy for 69 years, from birth defect of bladder extrophy. No outside sign of this ostomy. Then Mayo R had big conference with me and concluded I needed 2 ostomies: colostomy, uroconduit & hartman’s pouch. Real decision-making occurred once Dr.Nelson and Dr. Frank got in there because previous records so old they had been destroyed.. I was allowed to receive Holy Communion just as I went in surgery- meant the world to me. They found all sorts of abnormal situations Came out after 8 hours with colostomy, uroconduit & hartman’s pouch. TODAY: 4 years of therapy 2x week. Depression, starts at reorganizing life and then restarting. NOW; care has become quicker with developed routine, still plan “what if “ leak in public, diet= 4 small meals, think and pray about them as git’s from God to offer up. Dislike activity limitations. Soooo grateful for Dr. Igor Frank , urologist & Dr.Connor Loftus, gastro for annual or emergency visits even though I live in Kansas. Airplane seatbelts hit right over stoma. Makes death not so scary and each good friend and laugh so appreciated. Husband in there with me for 43 yrs—-I do feel guilt over messing his life up. Can’t wear hernia belt because ostomies are at different levels and recessed stoma in uroconduit. A lot of stress, use a lot of resources to help me carry it. God just wanted me to crawl up on cross with him and be creative about helping others. I miss my husband’s touch in sexual way, just too fragile.

Good morning, iIt only takes a story like yours and your bravery, for me to feel both grateful and humbled. It shows our desire to overcome and live a life given to us, even if it is challenging. Thank you for sharing your life on this site; hopefully, it will spark further conversation from others. I leave the advise givers to others who have lives closer to your struggles. I have been more fortunate in my colon journey. Take care virgo1952

I am at a crossroads with a fistual (channel) connecting my bladder and colon just inside the rectum. Mayo R wants to take out bladder and colon and replace with two bags. just got over another bladder/kidney infection for last 5 days with antibiotics and get them every 3-4 months. very painful. am 73 this year and don't know if the surgery is right for me. sexual activity is still important to me/us. don't want to give that up but want to live. when at Mayo R in 2018, it didn't sound like my two providers have done both surgeries at same time plus reconstruction after taking out bladder and lots of colon. prostate radiation in the area from 2007 makes tissues in the area fragile. being pain free is important but so is quality of life. praying a lot. stay tuned as am still undecided.

Hello, @hodagwi . Sounds like you have some big decisions to make. Have the doctors given you any pros and cons for the surgery? Is it mainly to prevent any more kidney infections? Over time, kidney infections could cause you major problems and maybe destroy the kidney. If you don’t mind my asking, what was the original reason for the bladder-colon connection?

2005 prostate cancer radiation through those tissues weakened them. doctors don't know why the connection was made. all the doctors say to have the surgery as they have for the past 3 years for colon and bladder. yes, it would prevent kidney infections I am told since will keep the solids and liquids separate but am told that could still have infections through the stoma. I am not getting any younger for about an 8 hour surgery and long recovery so my kids say to do it but they are not around to take care of me. this has been ongoing and I am part of an ostomy support group so talk to them monthly about how they are doing and issues in have one or the other. hard to find someone that has both bags.

@hodagwi Your doctors may delay the decision about surgery because of the covid-19 situation we are currently in, but that gives you more time to research and talk to people. I’ve come up with some things for you to think about.
1. How is your overall health? 2. Can one of your children come to be involved in discussions with doctors? 3. Will your wife be able to help? 4. Have you spoken to an ostomy nurse to discuss all of this and your concerns? They specialize in stomas and their care. 5. Can you easily manage the stoma you have now (if you have one)? 6. What changes in physical activity will you have in the short/long term? Can you live with these limitations? 7. Could you and your wife use some short term help? The surgery and your rehab will be very hard on her also. 8. Can your doctors recommend anyone who has had this surgery that you could talk to?
My sisters and I had to do this for our elderly mom when she got bladder cancer. And then again when she fractured her pelvis. I hope this helps a little. Becky

overall health is good. no pills at all. cholesterol is ok. sugar is ok. BP is fine. a little overweight. wife has COPD and is on oxygen and meds 24/7 so of limited help. I like talking to ostomy nurse and will check with hospital to see who is around. thanks Becky for comments.