Ostomy: Adapting to life after colostomy, ileostomy or urostomy

I am considering asking
my gastroenterologist about an ileostomy and would appreciate any comments. Here's my long story:

Way back in 1995 I was treated for endometrial cancer with a total hysterectomy and extensive radiation. They burned the heck out of my insides with 35 days of total abdominal radiation (from chest to way down) followed by 9 days of intensive radiation in my lower ab and finally a 24 hour cesium implant with the state bringing it in with the tech dressed in protective gear. He
placed a barrier in my hospital room where no one was to pass for more than 5 minutes.

They told me that if I had gone for treatment anywhere else I would have had chemo and I was glad that I wouldn't lose my hair. Stupid me!

Today they tell me. "We don't do that anymore more!" Yeah but they did it to me.!

I had some digestive issues afterwards but not that bad until 20 years later. Almost exactly to the same date I had a colon cancer tumor caused by the radiation. I tried to tell the surgeon that he was going to find a lot of damage caused by the radiation but he refused to discuss it with me and said he would have to see it during the surgery. I did want s different surgeon but I didn't know one and this guy had been recommended by my long time trusted gastroenterologist. Even if i found a different surgeon I would have to make an appointment and rescheduling the surgery would take time. The tumor had not spread yet and I wanted to get it out asap. So I let this surgeon cut me up.

The surgeon told me that I would have a temporary ileostomy for about 3 months. But that didn't happen. Instead when he saw the extent of the radiation damage he cut out almost a foot of colon and almost 2 feet of my small bowel!

I have had terrible digestive issues ever since. After more than 6 years of this I can't live this way any more. I'm used to the diarrhea but no matter what I eat or even if I I don't eat anything, I have pain snd discomfort all day. And it has gotten worse over the last few weeks.. I'm currently having an exacerbation of my lung diseases and I know I won't get better because my lungs are struggling to send oxygen to my digestive system.

Over the last 6 years I have tried every drug snd every diet and nothing has worked and some made it worse.

What do you think about an ileostomy for me? Would it help stop the pain and constant discomfort? Would I be able to eat?

Any advice would be greatly appreciated. Thanks

I had an ileostomy last May, due to rectal cancer. Would really like to be able to visit our daughter, which means flying. Has anyone flown with an ileostomy? Any tips? I’m scared of it because my bag tends to spontaneously blow the seal and explode all over. Would appreciate any help.

Rits So Sorry to read your storey....terrible trauma you've been through. Along with physical treatment I hope you are getting emotional support?
In response to your ileostomy question and to answer Colleen about my story: I am not a fan of an ileostomy...alot of concerns related to same esp. if you have an"overactive stoma" The ostomy bag is continually filling up & has to be drained and I deal with multiple leaks/explosions resulting in incontinence typically when sleeping ( though I set the alarm--can only sleep 2 to 3 hours at a time in effort to not get leak} needless to say I am sleep deprived. Believe it or not I went in to have what appeared to be a tumor on appendix that lead to an appendectomy. About 3 or 4 days later day before discharge I went into respiratory distress taken to ICU put on life support septic followed by 5 more surgeries, had a cardiac arrest--down 10 minutes they called my husband to see if I should be resussitated By a miracle I survived. Was in a coma not medication induced for 38 days Then finally came out of it. During above I was given Last Rites twice.
When I was finally conscious enough discovered I had an ileostomy something I made clear I didn't want.... Still don't know how/ why this happened MD not forthcoming to explain (an aside-- contratcted Covid and wound up on a respirator for 7 days during course of my treatment. Had to learn to stand & walk again A Real Nightmare. There is more but I'll shut up now....

Omg How horrible. I'm so
sorry this happened to you. Can they reverse the ileostomy?

The surgeon said it was reversible but I went to a different surgeon after I recovered--not trusting original surgeon, and the new surgeon advised me not to have another surgery that the risk out weighted the procedure and that he wouldn't touch me. He agreed that it was a miracle that I made it through that ordeal. He also referred me to have consultation with another surgeon who had worked at the Cleaveland Cininc well known for colorectal surgery even though he expected this other surgeon to tell me the same thing but that maybe I would feel better about getting second opinion. Still have to see this surgeon he works now at Columbia hosptial.

Honestly I don't think I could repeat all that horror and am just happy to be alive

Hi Beth,
This blog post may help answer some of your questions about traveling with an ostomy.
- Traveling with Your Ostomy https://connect.mayoclinic.org/blog/ostomy/newsfeed-post/traveling-with/

It seems to be written just for your situation. I hope others will offer further tips about the issue you’re having with the bag blowing the seal. How long is the flight to visit your daughter?

Hi all, I wanted to let you know about Mayo’s monthly Ostomy Support Group that meets the first Tuesday every month. The next meeting in next week March 1 from 6-8 pm Mountain time, led by ostomy nurse, Candy Boyes. I encourage you to register to attend. See more info here: https://connect.mayoclinic.org/event/ostomy-support-group-110/

It’s an hour to Vancouver, almost four to Minneapolis, then less than an hour on to Rochester.
Thanks for the blog post info and I’ll hope for input from others as well. I’m so glad I found this group!

Do they live stream it?