A little ventilation

Sun is shining, the weather is sweet, yeah 🎤

Lee Ann, thank you so much for this response!! I’m truly sorry you had snakes in the grass. Fake friends are worse than an enemy.

Best wishes to you! 😊

Hear, hear! I second your advice! My stoma surgery (colostomy later revised to an ileostomy) was an emergency and saved my life. Once I found the right appliance that best suits my needs, I haven't looked back. 

I 100% agree with your comment. I was in a similar position having to have emergency surgery and was left with an ileostomy. I have suffered with crohns disease for years. I Was in constant pain and couldnt tolerate food so was on a liquid diet and a lot of different biological drugs to control my symptoms, all of which had no reaction. I have had mine for 12 months now and have been pain free. I am enjoying food again and can eat and drink anything I want without worrying about having to rush to the toilet. My ileostomy is reversible, however I have told my surgeon that I don't want it reversing. I am loving life again. People who don't know me would never know I have a stoma.

Hi AS,

 

My situation is similar to yours in many ways and my illeostomy was a choice not an emergency surgery. I had back surgery in my 30's during which they did some pretty severe nerve damage which included a bowel prolapse, damage to my sphincter and damage to my large intestine causing slow to no colonic transit. They said I would end up with a bag eventually as there was nothing they could do to fix the sphincter and the prolapse repair would just fail. I spent many years being told to eat more fiber, drink more water, lose weight....you name it...without anyone actually looking at why this was happening.

I suffered for 12years with progressively worse lack of colonic transit, rectal prolapse that fell out with coughing and of course the severe abdominal pain from the constipation(not from dry movements just lack of any movement of the muscles at all). I would get to the point where I was thowing up and couldn't even hold down water with the back up. Any medication they gave me mostly didn't work to get things moving again but when it did it was unpredictable and explosive so I spent most of my time at home and didn't really want to go out either. I have had meds decide to work in my sleep and woken up swimming in shit, literally due to incontinence. Even the prep for colonoscopy didn't necessarily make the muscles in my colon respond. 

I finally found a specialist willing to listen and do the appropriate tests in 2021. She confirmed that there was not a lot they could do but that had I considered an illeostomy. She suggested a loop to see if it would resolve my issues as there was no guarantee with the large colon damage. I literally started crying from relief in her office. If it didn't solve my issues they could always reverse it.

My late husband was relieved that I would finally get a possible solution and very supportive. A few of my immediate family including my adult kids were curious and had lots of questions but ultimately just wanted me to feel better and get my quality of life back. Other people though....so many horrified responses and comments like 'but your going to have a bag?' or you couldn't pay me to have a bag and general negative comments. These people also didn't really understand how much I was suffering prior to the ostomy and that this was a small price to pay for getting my life back. 

I had my ostomy in June 2023 and had some surgical complications which slowed my healing. I would still not go back and change that decision. I also have a large peristomal hernia which they are not willing to correct unless I lose weight. It doesn't cause pain but is huge, like a canteloupe, and I cannot hide my ostomy with clothing due to it. I still would not go back and choose not to have the surgery. It took about 6 months after my surgery for the output to normalize and to learn how eating different things changed my output. It also took some time to find the right combination of appliances that works best for me. 

Bottom line...I got my life back having the ostomy and I don't care what others think about it. I no longer feel sick all the time. I can do sports, travel, socialize with my friends and generally feel great. I find it easy to empty every time I need to go pee so its not even inconvenient. I have gotten back to travelling and spent a week in Cuba in the water in a bathing suit last Feb and still had no issues with the ostomy. 

My late husband passed before my surgery and I was worried about dating with the ostomy but have even met a wonderful man who could care less about it. He literally just doesn't even notice, as it should be. 

Our experiences are all different but having chosen to have the illeostomy and having similar issues(except the cancer(, thought I would share. I hope all the stories can help you make the right decision for you!

Marina

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

What a tale, with a happy ending 😀

Thanks for sharing your story.  Like you... I was so happy to "get my life back."

Hi Marina,  I can relate to your story in many ways.  I spent decades with what doctors simply called 'constipation', when it was really 'colonic inertia', the muscles in colon just didn't work properly.  So many tests and medications over the years, some meds would work for a very short time, and then back to 'normal'.  I managed to work full time until I was 56, when the disfunction was just too difficult to manage and I went on disability.  It wasn't until my poor colon finally perforated after all those years of abuse, that any intervention was tried, and then of course it was an emergency.  I was given a colostomy, which of course also didn't work, because my colon still didn't function, and then it was trip after trip to the ER with blockages.  My surgeon suggested an ileostomy, and that was what finally changed my life for the better.  Saying goodbye to my colon was the best thing I ever did.  My quality of life has improved 100% and I would never go back.  I've been told my ileostomy is reversible, but it's a chance I will not take.  Heard too many horror stories about ileo reversals.  I'm happy where I am.

Terry