Has anyone developed proctitis after a diverting ileostomy?

Posted by GISUE @slangston, May 6 1:05am

Proctitis was found on a colonoscopy. Loop ileostomy was done February 2024. I think about 25% of patients with a diversion ileostomy can develop it.

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In the beginning it wasn’t too bad but things keep going wrong and very upsetting and depressing.
I’m hoping things will be better moving forward.
I agree the older you get the harder it is.

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Profile picture for Susan F, Volunteer Mentor @susanf8

@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.

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@susanf8
Had my appointment with the WOCN nurse. She was a great help. Hopefully we’re on the right track. My husband manages my changes. Don’t know what I would do without him.
Home Health ended some time ago but they helped us get started with the ordering of our supplies.
Keeping my fingers crossed.
Thank you so much for all your help.

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Profile picture for pidge32 @pidge32

@susanf8
Had my appointment with the WOCN nurse. She was a great help. Hopefully we’re on the right track. My husband manages my changes. Don’t know what I would do without him.
Home Health ended some time ago but they helped us get started with the ordering of our supplies.
Keeping my fingers crossed.
Thank you so much for all your help.

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@pidge32 I'm glad to hear it went well! It's great to have a spouses support and help isn't it?

Do you have a plan for if there is a time he can't assist you?

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Profile picture for Susan F, Volunteer Mentor @susanf8

@pidge32 I'm glad to hear it went well! It's great to have a spouses support and help isn't it?

Do you have a plan for if there is a time he can't assist you?

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@susanf8
It sure is. He is wonderful.
We do not have a plan but we are talking about me learning how to do it. I have watched him enough to know how but I’m afraid I won’t be able to see the stoma well enough to get the barrier on properly.
I believe I have to be laying flat right?

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Profile picture for pidge32 @pidge32

@susanf8
It sure is. He is wonderful.
We do not have a plan but we are talking about me learning how to do it. I have watched him enough to know how but I’m afraid I won’t be able to see the stoma well enough to get the barrier on properly.
I believe I have to be laying flat right?

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@pidge32 I always do my changes standing up and have a hand mirror on the counter so I can see my belly. My supplies are prepared and laying on the counter within easy reach.

I've never changed it laying down, that seems extremely awkward to me. The WOCNs have me recline in an exam chair because that makes sense for that setting.

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Profile picture for Susan F, Volunteer Mentor @susanf8

@pidge32 I always do my changes standing up and have a hand mirror on the counter so I can see my belly. My supplies are prepared and laying on the counter within easy reach.

I've never changed it laying down, that seems extremely awkward to me. The WOCNs have me recline in an exam chair because that makes sense for that setting.

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@susanf8
The WOCNs had me recline in an exam chair as well now that you mention it. With my husband doing it I’m lying down flat, that’s why I thought I needed to but I’m sure if I can stand up I’ll be fine.
Thank you so very much. 🙏

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