It's a Trip

The beginning of June '16, my intestines burst, and I had an emergency surgery with a power wash, as the doctor put it. I woke up with a colostomy and a wound vac for the long slice down my stomach. I am happy to be alive, and I made it to my daughter's high school graduation before this fiasco, so that keeps me grateful every day. But educated on this, I am not. They sent me home with the Hollister snap-on bag that has a wafer. I usually warm up the wafer a little with the hair dryer, and that makes it stick so I can leave the base on for a week and change the bag every couple of days. Since it snaps off, it's easy to clean or empty if not super pasty stuff. I have seen people write about liners and deodorant that I would be interested to learn more about. I see there are a lot of companies. I'm challenged with wearing pants because it's right at belly button height. I'm just trying to figure out what it's all about. The doctor said in 6-8 months they could do a reversal, but that it is a bigger operation than the first because of scar tissue, etc. I'm just focusing on healing from this wound. Anyway, I just wanted to say hi and thanks for all the posts and your honesty on such a subject!

Hello Newstom. Welcome to the MAO community and thanks for posting your story. The first thing I like to get across for people with a colostomy is to urge them to look into the possibility of irrigation. It's not for everyone but if it works for you then it will make managing the whole of life with a stoma so much easier. I was told that I should not begin irrigating until at least 6weeks after the operation so it would be as well for you to seek advice from an ostomy nurse given that you have scar tissue issues.
The second point would be to encourage you to experiment with everything that is available both as samples from the supply companies and by using stuff that 'makes sense' to you. For instance, my brother-in -law has unfortunately had to go into residential care with a terminal illness and he gave me all the unwanted stuff he had in his bathroom cabinet. (aftershave, body lotions, mouthwashes etc) I'm just working my way through some of them and have found that they are great for freshening up the sleeve (Bag) that I use and they make the whole bathroom smell much better. I've been careful not to get aftershave directly on the stoma because I KNOW HOW MUCH IT STINGS when it goes on the face. Not that I'd be able to feel anything on the stoma but you have to be careful. The mouthwash has proved to be a very pleasant and acceptable deodorizer and I might well continue to use that after my present supply runs out.
Much of what is said about stomas is to do with 'common-sense' as much as it is to do with medical advice so I try to think things through from that perspective before making decisions. Another for instance: I could have a reversal but I figured that the problem that necessitated my stoma in the first place was likely to come back if I returned my body to how it was. What would be the point in putting myself through all that surgery just to find that I had stepped back 'from the frying pan into the fire' so to speak.
It's early days for you on this journey and hope all goes well for you in the future.
Best wishes
Bill

Thanks, Bill. So, what do you do? Just sprinkle some scents into the bag? Or on a tissue into the bag? And where do I find a stoma nurse or support group besides here, I mean. I have the Hollister Tupperware, as I call it; the wafer and bag have a ring that snaps together. How often should you change the wafer? And it's hard to cut the hole the right size, and the stoma paste is tricky and sticky. I'm still baffled, and I'm not sure what other kinds of stuff is out there.

Hello Newstom. Yes! I just pour a little into the sleeve, swish it around and pour the excess down the loo to make everywhere smell better.
I'm in the K and stoma nurses are hospital based so that's where I go to see them. I'M NOT SURE ABOUT THE USA BUT I'm SURE SOMEONE OVER THERE WILL JOIN IN THIS THREAD AND TELL US WHERE THEY ARE.
Have a look on the recent post on how often to change the bag and you will see that most people have different opinions on this so it's about experimenting to find out what is right for you.
'Tricky and sticky' I would certainly agreed with regarding paste. I only ever used it once and gave it up as impractical. I suppose it's largely down to what the purpose of using the paste is. I found that the rings did a better job for me to stop leaks but again everybody seems to have different opinions.
There are some good posts on youtube about what is available for stoma management and I sometimes browse there just to see what they have to say.
Best wishes
Bill

I had a similar incident and ended up with an ostomy bag. I found a web site www.locostmedicalsupply.com that sells mini bags, which I like much better than the bigger bags. You can place an order and get your supplies the next day. I hope to have my reversal in January.

Words of Encouragement from Ostomy Advocates I Hollister

Hi, Newstom. My experience was almost identical to yours but the burst colon (descending and sigmoid) happened on September 22, 2016 and I didn't go to the ER until September 24. They treated me with antibiotics until October 3, when I was dying. They finally called in an experienced surgeon. He didn't think he could save me but he tried. I didn't know any of this because they had drugged me to sleep on September 24. I woke up on November 3 with a colostomy bag on the left of where my belly button used to be and a huge gaping surgical wound with a wound vac sucking the blood out of it on the right side. I have finally accepted the bag and learned how to deal without leaks and with as little mess as possible. My wife of 53 years literally kept me alive and kept me going through all this. Before joining this group, I had never heard of a wife showing that much love and commitment. My wound is still not completely healed, but I spent the day going to the bank, getting haircuts, and eating out with her. It won't be long before I can drive again and even ride my Harley again. I hope your recovery is as good and complete as mine will be.

Hi Newstom,
I'm in California too! Central Valley, in fact. I can't find your original post, so I'm not sure what questions you have, but I had my ER colostomy in July 2015 and takedown in May 2016.
It was a short time because my stoma was completely inverted, and I couldn't avoid leakages, so my surgeon recommended it. I was so inverted that it tried to heal itself and would get smaller between BMs. Then it would tear open to allow passage. Also, my skin around the stoma was always raw and weeping from adhesive allergies and having to change so often.
I used a one-piece that finally started working for me when I got spray adhesive remover and soaked it off before pulling. The glue is much more adherent when it's fresher. If I could keep it on a couple of days, the glue broke down some and wasn't as painful.
I always used pastes, but the thinner it's applied, the better it sticks. I tried many rings, but more often than not, they would stick to itself and end up being a plug that backed me up.
It's true that scar tissue was a problem. My surgeon first tried laparoscopy, but that didn't work, so I ended up with big scars, and she looked totally exhausted out of surgery. I was scheduled for an hour, and she took 3, then was worried about excessive blood loss. She had to fix a hernia 4 months after takedown, and that was hard also because of scar tissue.
I have had 2 cesarean sections. My son weighed 10 lbs 1 oz, and his sister delivered early at 9 lbs even.
It sounds to me you're having success with the products you started with. If it's working, then why change?
I was surprised how many suppliers there are, and I'm sure I would've found something that worked if it was permanent. By the way, my surgeon went back in when I had the bag to try and restructure my stoma, but that didn't make any difference.
I avoided nuts, seeds, and corn. One of my worst blow-ups was after eating at a serve-yourself salad bar, and I had everything! The sunflower seeds were really bad.
I still have irregular bowels, not going for days, then having painful blowouts. Right now, I don't know when I last went, but it's been long enough that my body is aching. I now address it sooner than before surgery, but I finally don't panic. I eat so much fruit and vegetables, I don't get it, but I'm stocked with everything from stool softeners to bowel prep I had to use for surgery. No, I don't want to go under the knife again.
I'm sure I drifted off topic, but hope I helped in some way. I get to prattling and can't stop myself.
Good luck,
Charlotte

Good comment, Charlotte. My reconnection surgery is on September 11. I hope it goes smoothly but I think the wise thing to do is have stool softeners and laxatives on hand at all times. The first time I have a blockage that I can't soften or loosen, I will go to the bowel prep also. I will want to protect myself better than I did before the colostomy so I will never need one again. Thanks for the ideas. Don

Good luck, Don,
Don't forget it's major surgery again and don't overdo it because you feel like you should be "normal".
I am just now starting to do things again and it's been 15 months!
It's easy to say, so make sure you do: take it easy! Give yourself time.
Charlotte

Thanks, Charlotte. I am going through the bowel prep right now and I don't want to do this again! I think I am finally learning that I am not superhuman. The heart attack (my second) during my first surgery has slowed me down and my wife is making me take better care of myself. After I get back out of the hospital, I will catch everyone up on how things are.

Good luck I will be praying for you

Don,
You probably don't feel up to sharing yet, but here's a get well soon note for you!
Take it easy and heal thyself!
Sincerely,
Charlotte

Thanks, Charlotte. I'm home, I'm alive, and I feel good. I don't feel strong so I'll post more later.