3 Weeks Out From J Pouch Removed, Now Perm Ileo

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PoucherInTO

Hi Friends

About 5 or 6 months back I posted that I was having my JPouch removed and going to a permanent ileo. This finally happened Oct 17th, and after 11 days in the hospital post op, I have been at home recovering. There are parts that are difficult, but each day gets better. Thank you Jill, for all your support so far.

I do have a question for all of you who have ostomies. Today I changed my appliance with the help of my WOCN, and there was a red ring of irritation around my stoma. I think because it's starting to shrink a bit of stool got trapped near the stoma since my last change. So, we used some stoma powder to create a crust, then put the Coloplast wafer (with a barrier ring attached)on top.

My nurse mentioned other options (convexity, Eakin rings, etc) so I'm curious as to what setup you each use. I'm thinking my swollen tummy changing shape may also be contributing.

Thanks in advance for any help

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JillMMember

Hi!!!!

Definitely Eakin seals. I find that red ring usually comes just before skin breakdown - usually if I wait too long to do a change or eat something particularly irritating. In addition to the Eakin I do use a dusting of STOmahesive powder when I have the redness...

11/7/138:16 PM

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PoucherInTOMember

Hi Jill,

Thanks again for the suggestion. I'm going to do a change on Monday, so I will form a crust with the stomahesive powder on the irritated spots and then use the Eakin seal. I'll let you know how it goes!

11/10/1310:41 AM

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ISeeUCMember

My setup is 1) Brava skin barrier spray, 2) an Eakins seal, and 3) my bag. I used to use stoma powder, but the spray does a better job protecting my skin. Good luck!

11/10/1310:56 PM

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Lynne2Member

I use convex bag and Eakin. Hang in there. It took me some trial-and-error, too, but it was worth it in the long run!

11/11/1311:26 AM

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liz11Member

or hollister adapt rings. for some of us they work better than eakin seals. Just get samples of both from both suppliers.

Also you may be better off with convexity. Or even a wafer with light convexity.

Your swollen tummy will be un-swelling as you noted, but also your stoma will shrink in size. So be sure to keep measure every so often in the first 2 months to make sure you have the right size hole in your wafer.

Patience is of great value in working through all the options to get a good sealing (leak free) appliance system but then also one that you are comfortable wearing. There are so many options out there. Just be patient and work through things. Before you know it you will be out and about and not even think about having a perm. ileo, or worse yet... like I do.. forget to change the thing every 4 or 5 day!

11/11/134:08 PM

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PoucherInTOMember

Hi Everyone! Thanks for all the suggestions.

OK, so the redness/irritation was much better with this change. We did form a crust with the powder, and we used an Eakin also. I love the way the Eakin feels - very secure and well supported.

One thing that was there, that wasn't with my last change, was a small granuloma. My nurse said sometimes this happens from an ill fitting wafer (and my stoma just keeps on shrinking) which allows stool to get under and irritate, or the wafer rubbing against the stoma. Luckily for me, I'm heading to my surgeon's office tomorrow to have my incision looked at so I will also have them look at the granuloma. I am also going to ask for some flanges with convexity to try.

Things are ok otherwise, very tired but eating every couple of hours and keeping well hydrated.

Thank you again to everyone for your support and suggestions, it's nice to know I'm not alone.

11/12/131:40 PM

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Holly HMMember

How are you doing now? I am having a permanent ileo done in October and wondering what to expect

6/23/1411:46 PM

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PoucherInTOMember

Hi Holly

I am doing great! I have never felt better in my life, actually. My surgery was in October, and I got used to my ileo pretty much right away. It did take quite some time for my abdo incision to heal as it had to be opened right up, but my butt incision healed very well, no issues at all.

I can't believe what a difference a year makes, this time last year I was a bundle of nerves awaiting my October surgery date.

Holly, feel free to PM me

7/2/145:50 PM

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Holly HMMember

I sent you a PM. Thanks so much for answering my questions. I am a bundle of nerves myself if I stop and think about it. LOL

7/2/1411:06 PM

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goldieMember

I'm going to have my jpouch removed after 22 years due to Crohns...was the removal surgery more difficult then the creation of the jpouch?

7/23/148:14 PM

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LHettiMember

I had my 15 year old jpouch removed this April. It's a big surgery and my barbie butt had to heal as well as that big midline incision. But it was ONE big surgery. For me, it was at least a 6 week recovery, but went much smoother than all the complications of my colectomy/jpouch surgery. I know there are hurdles anytime we face surgery, but my experience was better this time.

Laura

7/24/148:00 PM

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Holly HMMember

So very glad to hear that you are doing well and the surgery was better this time. I got an abscess after my first surgery with temp over 104. I almost died from the infection, so that pushed my recovery time to about 9 weeks. Praying and hoping this one goes better. Please keep us posted about your continuing recovery. Homie

7/24/149:09 PM

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