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Bertie’s Journey

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 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 naval. 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.  

See all blogs by RoanokeVirginiaArmyBrat
Comments:
Dec 09, 2021
lovely : Yoi you sure have been through a lot. I am glad you are doing good now hope you continue to do good. Best wishes
Dec 10, 2021
Bill : Thank you for sharing your story, aren't stoma nurses the best! I wish you well for the future
Bill
Dec 10, 2021
RoanokeVirginiaArmyBrat : Thank you Lovely and Bill. Anyone with a stoma, no matter what type, has been through a lot.
Dec 10, 2021
Caz67 : Hi
Glad to hear Bertie is now settled and content xx
Dec 10, 2021
RoanokeVirginiaArmyBrat : Thank you. It was a journey.
Dec 10, 2021
Morning glory : Congrats Merry Christmas. So glad you found the right fit
Dec 10, 2021
RoanokeVirginiaArmyBrat : Thank you Morning Glory.
Dec 10, 2021
delgrl525 : 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 of boatloads of laxative 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
Dec 11, 2021
RoanokeVirginiaArmyBrat : Thank you Terry for the comments. Before I had the surgery I was talking to a friend who had a stoma and she was the one who suggested naming her. I'm glad I did cause now if friends want to know how I'm doing they just sat “how's Bertie. “
Dec 11, 2021
delgrl525 : Love it!
Dec 12, 2021
mikamouse : Glad you found some peace!! I'm a year in this week!
And I named my stoma Minnie????
Dec 12, 2021
RoanokeVirginiaArmyBrat : Love Minnie.
Dec 12, 2021
Rocket52 : I also have a Nile Ostomy. I don't have any mucous discharge because they sewed up my anus to prevent that.
Dec 12, 2021
Rocket52 : Ileostomy is what I meant!
Dec 12, 2021
Rocket52 : I have had my ileostomy since 2005
Dec 12, 2021
RoanokeVirginiaArmyBrat : 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.
Dec 12, 2021
stolencolen : Hi Bertie I'm Chris ftt try I'm 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 the 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 new dangled 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 :).
Dec 12, 2021
stolencolen : Btw those alien turds are weird? I don't know that I've ever seen one of those? Must be the salt water cleanse I do each week in the ocean??
Dec 13, 2021
RoanokeVirginiaArmyBrat : 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.
Dec 14, 2021
kray : 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 to rectum sewed up, making the Ostomy a permanent fixture. Since then I have had more surgery involving an Ileostomy so in the end in would have happened anyway. Who knew.
Dec 14, 2021
RoanokeVirginiaArmyBrat : Dr said the brown smelly liquid was rare but it did happen. For me it's a two day affair. I start by feeling very tired and weak, then have a few small episodes. At night around bedtime I cut loose and “mess all over myself. You would think I would learn and have some depends on hand. Today is my second day and I'm just tired. This happened the first time about 3 months ago so I'm going to mark my calendar for 3 months from now. I will be buying a box of depends to have on hand.

I don't mind it when it's just the mucus balls. They're doable.
Dec 14, 2021
kray : Good luck to you and Merry Christmas!!
Dec 14, 2021
RoanokeVirginiaArmyBrat : Merry Christmas to everyone. Hope your holiday is great.
Dec 17, 2021
Rocket52 : 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!!
Dec 17, 2021
stolencolen : Omg all the different diseases you folks describe makes me wonder how anyone manages to survive this life. I just had straight up UC and that was enough for me to get my illie.

Dec 17, 2021
RoanokeVirginiaArmyBrat : 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 to learn from my experience.
Dec 20, 2021
stolencolen : 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 why I don't get these turds you describe? Very interesting in a sick type of only an ostomate would understand kind of way.
Dec 20, 2021
Rocket52 : 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!
Dec 20, 2021
lovely : 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.
Dec 21, 2021
Bill : Hello Rocket52.
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
Dec 21, 2021
RoanokeVirginiaArmyBrat : Since I don't swim, I can't help you.
Dec 25, 2021
stolencolen : I only swim in the ocean. I used to use pools but decided the ocean is less monotonous.
Dec 25, 2021
stolencolen : I'm thinking the clothing is dependent on the type of ostomy and the type of swimming you do? I have a Koch pouch and prefer ocean swimming so for me a wet suit and no patch works best. Likely if you have leaking issues or alien turns you will want to wear some type of appliance or patch ?
Dec 27, 2021
kray : What is the big deal about swimming? put on a swimming suit ( I must admit I wear a spandex panty under mine to keep the appliance close to my body) and choose a suit with a pattern or rusching on the side with the pouch. Then get in the water. I do water aerobics or swim or even sit in hot tub. No problems. You can't stop living because you have a different way to eliminate waste. Go enjoy life!!


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