Has anyone developed proctitis after a diverting ileostomy?

@pidge32 if you are not getting through to the WOCN, then I'd suggest calling you colorectal surgeons office, your GPs office and/or you GI's office.

You need to be seen by someone who can look at you and help figure out what's wrong.

Called the surgeons office and they sent me back to the WOCN!
Today is Saturday so I will give them another call tomorrow. If I still can’t get a response I’ll call my GI doctors office.

Thank you

@slangston
Thank you we have been in contact with Coloplast and they are trying to help.

When I saw the text earlier in these blogs where someone had said how they hated their Ostomy I was a little surprised. Now I know what they mean as I hate mine too!! It’s been almost 8 months since my original surgery, then I had to have another same day surgery two weeks ago because of a prolapse where the other part of my intestines came out of the stoma opening. They had to remove 9 inches of the intestine.
Now I have a little valley in the stoma area and it collects bile and causes leakage.
On top of this I have lost almost all my hair, to the point I need to wear wigs. I am so done with this whole mess 🥹

@pidge32 If you had surgery and your stoma changed then you do need follow-up.

Has your stoma changed size? Usually it is quite swollen after surgery and you need to keep an eye on how big the hole in your appliance is, and make sure you are not cutting it too big. Also, if you are still using your old supplies, and they were pre-cut, then a hole that is too small will also cause problem. If there is a dip, then you need to fill it, or possibly a convex appliance makes sense.

Keep calling the WOCN office, follow up with the surgeon's office and tell them the WOCN is not calling you back and ask for them to help get you an appointment. And of course, calling your GI office is a good idea as well.

Good luck!

@susanf8
How can I cover the valley that has become part of my stomach?

@pidge32 I used Eakins Seal when I had a dip at the top of my stoma. It evened out the dip so that my appliance worked. Its not really uncommon for the abdomen to be uneven. There are a number of different products, Hollister and Coloplast have them as well as Convatec's Eakins Seal.

It took me some experimenting, and working with WOCNs to get it working consistently. I also tried convex appliances.

Keep pressing to see a WOCN!

@susanf8
Hooray! I finally got to speak with someone from the WOCN office.
She was very helpful and I have an appointment for Wednesday morning.
Thank you so much for all your help. I’ll let you know how I make out b

@pidge32 that's fantastic! Can I suggest that before you leave the appointment you book a follow-up? You can cancel it if you don't need it, but it might be reassuring to check if things are going well, and try something else if they are not.

If you want a support belt and don't have one, ask about a Nu-Hope ostomy belt - the WOCN should be able to measure you and order one.

Are you still having home health coming? If so, you might have to order supplies through them. If not, you might want to have the WOCN make sure you are getting the right supplies from your supplier. It sounds like you are managing your changes yourself?

I'm glad you are getting in person support! Some things are just hard to figure out online.

Thank you 🤞

@pidge32 I have to say I hate mine too. Never admitted it to anyone. It seems the younger you are when you get one the better you adapt. I’ve had mine for 16 months and now on my way to Rochester again for end ileostomy on Friday. Getting one when you enter your 70’s isn’t easy..