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 chrohns disease his colon had to be removed and for him it's been down hill every since. Because of the irregularities in his skin surrounding his stoma there have been so many leaks. Sometime 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 seem 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......dont eat too much before I change the bag.....and hold the bag tite around the stoma for at least 60seconds 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......been doin this since 2010 and trust me i had plenty of leaks.....pretty humiliating when i tried to work in heals, hose and a skirt and leaked all the f**k over my office floor

hi mattshalie I,ve had an ileo. for 30yrs. and occasionally I get a raw spot next to my stoma, after I,ve cleaned and dryed the skin around my stoma I put a layer of calomine lotion on and warm the base plate so its stickier and 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

Living with Your Ostomy | 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 what ever barrier creme 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.........on 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 2015 I had a cholestemy bag done I was never diagnosed they tested me for all kinds of things I had chronic diarrea. 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 thru same problem but the Stoma nurse showed me the crusting method applying powder around 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 thru 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 docs would specify the type of intestine remove such as duodenum jejunem or illeum. 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 . Have 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 you surgeon approves. there are tablets you can take to lessen the oder 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 super hero thank for sharing sorry it took so long but my computer was gown thank you !!!! Angelica

I meant to say down not gown (smile)

Again Angelicamarie I forget to put my name on my message.