Life after surgery hasn't been good

Hi everyone, can someone give me advice on how to help my husband who had surgery over a year ago? Because of Crohn's disease, his colon had to be removed, and for him, it's been downhill ever since. Because of the irregularities in his skin surrounding his stoma, there have been so many leaks. Sometimes he uses up to 5 bags a day. He has tried everything suggested to him by the wound care nurse, but nothing seems to work. His skin is almost raw. And after a while, it seems like no one wants to help or can help. Any suggestions?

Hello Mattshalie.
Thanks for your post. Have a look in the content box on the left of your screen and click on 'Collections'. The first heading is OSTOMY (general topics)and if you go in there and scroll down the list to 'Ostomy tips' by eddie. (there is another with the same title by someone else)The topic of leaks is discussed by many contributors.
I hope that this helps but I also hope that you get lots of replies that are more up to date.
Best wishes
Bill

Hi Mattshalie.
Five changes a day is totally unacceptable and cannot continue. Something is seriously wrong and must be addressed as quickly as possible. You will find many helpful posts, as Bill suggests, by exploring this site. I found great information about warming the flange with a hair blower before applying it to the skin. This was all I needed to live virtually leak-free for about 5 years. I would also ask you to question how helpful all your health care providers have been. (No one wants to help???) Over the years I have read stories here about botched surgeries or surgeries which placed the stoma in a terrible position. Have you considered going to another colorectal surgeon for a second opinion? Is your husband's wound care nurse certified in ostomy care such as an enterostomal nurse? Has your husband tried different products? You can contact various suppliers for free samples. Some work better than others. I don't mean to alarm you; but you and your husband must be at wit's end by now, and all possible causes and assumptions should be checked. Good luck and let us know how you make out.
PB

I use an ostomy spray adhesive, barrier ring, and paste around the opening of my pouch. Don't eat too much before I change the bag, and hold the bag tight around the stoma for at least 60 seconds after a change. There is stoma powder when the area is raw. The enzymes from the small intestine can cause 3rd-degree burns. Make sure the area is dry after the shower and before applying the new bag. I've been doing this since 2010, and trust me, I had plenty of leaks. It was pretty humiliating when I tried to work in heels, hose, and a skirt and leaked all over my office floor.

Hi mattshalie, I've had an ileo for 30 years and occasionally I get a raw spot next to my stoma. After I've cleaned and dried the skin around my stoma, I put a layer of calamine lotion on and warm the base plate so it's stickier, and then I put it on. Then I attach my belt. I usually change one day sooner and find that the raw spot has cleared up. Good luck.

My Ostomy Journey: Ryan | Hollister

I'm so sorry this is happening with your husband... I've had leaks for two years. My stoma is an inch away from my belly button. I did contact Coloplast and Hollister, and they sent me some sheets like Comfeel bandages that you cut a hole in for your stoma and paste that you try to fill in the deformities with and apply the ostomy bag over... I had limited success. I did have better success with Coloplast Sensura bags that the flanges are more elastic and mold better to the shape of my skin. I also use stoma powder and whatever barrier cream I can afford.

I had so many leaks and found the Marlen deep convexity worked so much better than anything else I had tried. I am so sorry he's experiencing this and hope the ET nurse finds a solution soon. I use the powder and prep wipes that I find helps, I also lie down and let it air out for a bit while watching tv...with paper towels nearby just in case!!

Just get the Salts Convex bag and Coloplast seal I use... they are bombproof for all. Email me if you'd like item numbers, etc., at teddyburr@hotmail.co.uk

I've had my ileostomy for 45 years.

Use the skin prep and make sure the skin area is dry. I don't use the powder on the skin because it compromises the seal capacity/integrity. Get your doctor prescribe Nystop; it's a powder to apply on the sores.

Nov 24, 2016
My name is Angelicamarie and in 2015 I had a cholestomy bag done. I was never diagnosed; they tested me for all kinds of things. I had chronic diarrhea. So they put me on a narcotic that I was taking for migraines, and it slowed it down; however, it was moved from the rectum to the colon.

Welcome Angelicamarie...you will find a lot of support here, and almost any situation that you can find yourself in, someone else has experienced too! Blessings, CH :)

I went through the same problem, but the stoma nurse showed me the crusting method: applying powder around the stoma, spraying with adhesive spray, and reapplying more powder until you've got a nice solid seal. With this technique, I can sometimes go a whole week without changes, and the nice thing is your skin doesn't get ripped off and sore. Hope it helps!

I have short bowel syndrome as a result of so many resections. Less than 200 cm of small intestine left, so chronic diarrhea and feeding tube through portacath from severe stricturing Crohn's. It's quite isolating and painful at times. Oral meds rarely work due to lack of surface area. I wish doctors would specify the type of intestine removed, such as duodenum, jejunum, or ileum. It sure would help those that have severe absorption issues.

Hello guys, when you had your surgery, was irrigation mentioned? Does it work? I asked my surgeon a few months ago; she said not yet! Last night I ate chicken and noodles, and it produced such an odor in the pouch, for I usually eat fish. Has anyone experienced that?

I didn't put who I am angelicamarie

Angelica, yes, irrigation works for those who qualify. I would suggest that you try it as soon as your surgeon approves. There are tablets you can take to lessen the odor of the output from your stoma. A link is attached.http://www.yourhealthsupplier.com/devromr-chewable-tablets-internal-deodorant/?gclid=CjwKEAjwtNbABRCsqO7J0_uJxWYSJAAiVo5LprZ7Xk7rLOuE7ctKalJ5JzpjUuQACXsTHBRkj82HGxoCkuPw_wcB

Hello mild-mannered superhero, thank you for sharing. Sorry it took so long, but my computer was down. Thank you! Angelica

I meant to say down not gown (smile)

Again, Angelicamarie, I forgot to put my name on my message.