Seeking dietary advice for ileostomy as bowels and leakage worsen

@soohart Welcome to Connect! It is concerning when you say you haven't had "good clinical hands on info for ileostomy appliances". Have you seen a WOCN lately?

I know when I first had my ileostomy in the 1980s, there was very little thought given to dietary guidelines. I was given a list and sent on my way. It is better now, and I think you can probably find dietitians who knows something about both ileostomys and diabetes. I would encourage you to start a thread in the Ostomy group, I'm sure you are not the only one with both an ileostomy and diabetes.

We have a monthly support video meeting with one of the Mayo Clinic WOCNs. It is this Tuesday, September 1st, as a matter of fact.
https://connect.mayoclinic.org/comment/1655304/

@susanf8 my experience with a wound care nurse was that she was not an ostomy care person except possibly in the hospital setting after surgery. I am less concerned about the diabetes as you say because so many people have it. I am more concerned with gout triggers snd the liver issues. I am in search of a dietician and may have found one so here is hoping. Glad to have the feedback.

@soohart I've worked with a number of different WOCNs when I lived in Arizona. It took me about 2 years to find an appliance that worked well for me. I probably worked with five(?) different people.

How long ago was your experience with a WOCN? Did you work with more than one?

What sorts of problems are you having with your current appliance, and have you tried anything new since you started having problems?

@soohart Welcome to Connect! It is concerning when you say you haven't had "good clinical hands on info for ileostomy appliances". Have you seen a WOCN lately?

I know when I first had my ileostomy in the 1980s, there was very little thought given to dietary guidelines. I was given a list and sent on my way. It is better now, and I think you can probably find dietitians who knows something about both ileostomys and diabetes. I would encourage you to start a thread in the Ostomy group, I'm sure you are not the only one with both an ileostomy and diabetes.

We have a monthly support video meeting with one of the Mayo Clinic WOCNs. It is this Tuesday, September 1st, as a matter of fact.
https://connect.mayoclinic.org/comment/1655304/

@susanf8 thank you. I have not found the path to ostomy wound nurses yet, so will keep asking. Unfortunately I have medical appointments on the first so will miss that online resource but will be using the Mayo Clinic groups now that I have found them.

@susanf8 this is useful to know. I’ve only worked with one nurse so far as that was the name given by my doctor. I have worked over the phone with a few people tied to the vendors to see whether their products would work. Basically I’ve been trying various appliances for nearly three years, think I have found something only to find after a few weeks that it is not so secure. I’ll just keep trying.

@soohart that's a very familiar story to mine. Some of the things suggested worked, a lot didn't. It's very trial and error. Have you tried Eakins Seal?

@soohart there is a search option on the WOCN site ( I've had the best success by including my whole state). You can try calling GI offices or Colorectal surgeon offices.
https://findanurse.wocn.org/
The UOAA has a telemed nurse option as well as other options (including other telemed services) listed.
https://www.ostomy.org/find-an-ostomy-nurse/