I was born with Hirschsprung's disease. My first enema was at a week old. I would go as long as 4 weeks without a bowel movement. By the time I was 60, my colon had no nerve endings so the only way I could have a bowel movement was with laxatives and stool softeners. At 77, I was up to 8 laxatives and 5 stool softeners nightly, and that was just to have 1 movement. Then in the fall of 2020, something happened and I had no control over my colon until about noon each day. If I didn't take the pills or tried to cut back, then nothing happened. Finally, a wonderful PA I saw post-hemorrhoid surgery suggested I have an ileostomy. I wanted to hug her. They ran all the tests necessary and in late January 2021, the decision was made to have the surgery. I named my future stoma Bertie, a nickname my father wanted to give me at birth.
When I joined this group, I was 5 months post-surgery, with no success in preventing leakage. I was on a very special diet and tried different types of barriers, with no success. Then in August, my life turned around. One day I called Hollister to speak with customer service. After telling the wonderful lady my problem, she asked me to measure the distance between the middle of Bertie and the small hole that was once my navel. When I did, she said that my problem was the fact that the barriers I was using fell over the old navel and when I laid down, the barrier was coming up and causing leakage. She sent me a larger barrier, new barrier strips, and a moldable ring. Since I changed equipment, life has been great. I no longer leak and only change twice a week. Bertie is very happy. I'm back on a regular diet. The only foods I'm not eating are large amounts of corn, popcorn, and lettuce. Next summer, I am going to try corn-on-the-cob.
On another subject, I started having mucus balls coming out of my rectum. My home health nurse and I named them alien turds. They don't happen often, but the surgeon said they will always be around. So don't distress if you feel like you need to pass gas.
I'm so thankful I had this surgery and that I get to spend the rest of my years with Bertie.
You sure have been through a lot. I am glad you are doing well now. I hope you continue to do well. Best wishes.
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Bill
Read answers to frequently asked questions about how to change your pouch and participate in activities.
Thank you, Lovely and Bill. Anyone with a stoma, no matter what type, has been through a lot.
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Congratulations! Merry Christmas. I'm so glad you found the right fit.
You have had quite the journey! I can relate to some of it, as I spent most of my adult years up to age 67 with a poorly functioning bowel. The only real diagnosis I was given was "lazy bowel". I too was dependent on boatloads of laxatives to make things work. Finally, a perforated bowel happened, which turned out, in the long run, to be the best thing that could have happened. It's taken me two years and multiple surgeries to find the sweet spot, but I now have a well-functioning ileostomy and my life has improved 100%, so I know just how you feel. I haven't named my stoma, but I'm thankful for her every day.
I'm so glad to hear you have found that happy place yourself. Merry Christmas!
Terry
Learn about some basic diet and ostomy pouch routines that can help prevent them.
Glad you found some peace!! I'm a year in this week!
And I named my stoma Minnie????
I also have a Nile Ostomy. I don't have any mucous discharge because they sewed up my anus to prevent that.
Rocket52, mine is still open and free to emit alien turds. They give me enough warning that I can make it to the bathroom. Just feel like I'm going to pass gas.
Hi Bertie, I'm Chris from the South Shore of Boston. I've had my osteomyelitis for over 40 years, and I remember back in the day those horrible, awful appliances. I'm an ocean swimmer, by that I mean I swim a mile to 1.5 in the ocean year-round. I didn't go this morning because my wife had other plans, but I'm out there in the ocean or the bay most Sunday mornings. Funny about the Nile osteomy before I realized it was a spell checker issue, I thought it was some newfangled osteomyelitis that I hadn't heard of. When I typed ostomy, the spell checker changed it to isomer. I named mine Illie, but I prefer Ollie, another name from the spell checker :) After 40 years of surgery freedom, I fear another surgery in about a decade :(. Hopefully, COVID takes me before then :).
Btw, those alien turds are weird? I don't know that I've ever seen one of those? Must be the saltwater cleanse I do each week in the ocean??
Today has not been a good day. I've had a lot of smelly dark alien turds today. Don't always make it to the bathroom. Hopefully they will be done tomorrow.
I first had colostomy surgery in 1994 for Crohn's. At the time, they didn't sew up the rectum and I had the same thing: mucus discharge. Every time I would cough or sneeze, I would have the terrible discharge. I could not live with that, and because I felt so good with the ostomy, I decided to have the rectum sewn up, making the ostomy a permanent fixture. Since then, I have had more surgery involving an ileostomy, so in the end, it would have happened anyway. Who knew.
Merry Christmas to everyone. Hope your holiday is great.
Roanoke: So sorry you have the alien turds! The ileostomy is hard enough on its own! I'm so glad the surgeon sewed me up. I have had my ostomy for 16 years. I had a large rectocele and doctors were afraid it would perforate. Good luck!!
Omg, all the different diseases you folks describe make me wonder how anyone manages to survive this life. I just had straight up UC, and that was enough for me to get my ileostomy.
I wish I had known many years ago that I could have Bertie in my life. I have some wild stories involving medication, accidents, unsuccessful trips to the bathroom, etc. I guess the best one is when my bowels opened up in a hotel lobby in New Orleans, without any warning, and while wearing white pants. And the stories go on. I'm thinking about putting my story on YouTube so others can learn from my experience.
Oh, I think I get it now. Some of you folks get these alien turds because you have a rectum. I don't have one of those, possibly that's why I don't get these turds you describe? Very interesting in a sick type of, only an ostomate would understand kind of way.
Roanoke, I don't envy you the alien turds at all! I gave up swimming. I wonder if you or another ostomate could share how you prep for swimming. Merry Christmas and a happy and healthy New Year!
Rocket52, there are a lot of people on this site that swim. You may get more responses if you post your question as a new question.
As lovely has pointed out -if you post this question about swimming separately then you are likely to get more replies. However, there is a quicker way to get answers to this question and that is to go into COLLECTIONS ->'Premium content'->Premium Content-> Clothing and Swimming with an Ostomy. Where there are a number of previous posts on this subject and plenty of useful replies.
The short answer seems to be that there is little to worry about with swimming. It's more about your own confidence and the determination to do the things you want to do.
Just go for it!
Best wishes
Bill