Struggling with Ileostomy Issues and Surgeon Advice

I would be annoyed; I have issues with my surgeon too. It's like they don't want to fix what's broken since they did the original surgery.

You absolutely shouldn't have to deal with that.

Hi Ashtonilleo,

We're in a similar situation with my wife's ileostomy. We're using Hollister products mostly, and next month we'll have two years in fighting this battle. The reasons why they can't "redo" my wife's would put you to sleep. Here's what we have learned at the school of hard knocks:

1. Convex barrier ring, cut to fit as closely to the shape of the stoma as possible. If yours is deeper, you can stack these barrier rings. The goal is to get as close to the stoma, both in depth and shape, as possible. Some of what I call bases (the square thing that the bag attaches to) have convexity built in.
2. Use extenders; we use a Y shape on the outside of her abdomen and a C shape on the inside. This will help, but not stop, your movement from unsealing the edges of the base.
3. Use the crusting technique you were hopefully taught at the beginning: powder and barrier spray, to protect the skin around the stoma.
4. Hollister, Coloplast, and Convatec are all very generous with samples and support. You can make an appointment with an ostomy nurse and email her (or him) pictures of your stoma to get good advice on what you might try. I was on the phone this week with the one from Hollister for an hour and a half.

I didn't mean to "101" you here. You likely know or have tried much of what I'm suggesting, so my apologies if I'm covering old ground with you. It has taken us far more experimentation than I would have imagined to get this beast tamed (still not fully). I wish you the very best with yours, and this community is SUPER helpful, understanding, and kind. You'll get lots of great advice and encouragement here. GOOD LUCK!

Make sure you tell your new surgeon or anyone that will listen. This is causing you great pain and great mental distress.

Many in the medical profession do not react to things they see as inconvenient.

But mental or physical pain seems to get action.

Try to find a surgeon who is experienced and compassionate in this type of surgery. Do not use the same one if possible.

I don't blame you for feeling frustrated. I think I would too. They should know better than to put your new stoma so close to the site of the old one. Even my doctor made sure that wasn't the case for me. You need a new doctor, one that knows what they are doing. Then address the issues. You might have to have your stoma on the left side instead of the right side to get away from old scars. It might be hard for you at first to adjust to, but if it stops the leaks, it could be worth it.

Tips on Hernia Prevention with Collin | Hollister

My mind immediately went to seeing another surgeon as well.

Hi Bluejay, What reason did your surgeon give you for saying your situation could not be fixed? I would be looking for a second opinion. It's not acceptable to have to live with a flush stoma that is not manageable.

Terry

There was no reason. And it doesn't matter about a second opinion. All doctors protect each other. I was with this girl who had breast cancer, and the doctor told her she had to have it removed. I told her to get a second opinion, and when she did, the second doctor told her to go back to the old one. He wouldn't even look at her.

Whereabouts are you in the UK?

UPDATE:

I'm having my ileostomy relocated!!!

UPDATE:

I'm having my ileostomy relocated!!!

Yeah!!!

Fantastic news!! I'm so happy for you!

Terry

I am sorry you feel that way about doctors. I don't agree with you, as I've had very positive experiences (and some not so great), and I have a lot of respect for my surgeon. You've obviously had a bad experience, and it's colored your opinion of all doctors. What a shame. We do need to advocate for ourselves, but if you aren't willing, things will stay as they are.

Terry

Thank you.

I have problems with high output also. I set an alarm every 2 hours so I can wake up and dump. I have had so many leaks that I never go anywhere without supplies and an extra outfit. My surgeon is making plans to refashion in late October. But a couple of major things I did that helped me greatly: I now use a high output bag with more of a plug on the bottom so it hooks into a nighttime bedside bag, like a Foley bag. Okay, cleaning out in the morning really sucks, but it's better than waking up with goobers all over me. I also started using a “Stealth Belt” ordered from Amazon. I now have like 4 of them. They hold the weight of your bag so it's not pulling at all. If you do leak, it catches a lot of the goobers. And last but not least, if I want to eat things that are questionable about stopping things up, I eat them no later than lunch; that way it has time to get through before going to bed, so dinner and nighttime snacks are only things I know will flow through okay.
Hope this gets better for you. You know, maybe go to the GI and tell him you need a new surgeon.
Debi

Get a second opinion from another surgeon.

Agree. A second opinion from another practice is definitely required.

Wonderful!

Make sure your surgeon knows to make your stoma stick out one and a quarter inches.

I'm happy for you! Congratulations!!! 😊

Dear ashtonilleo, in my experience, the ostomy bag makes a huge difference.

When I was in the hospital after getting an ileostomy, the hospital provided ostomy bags with a convex connection that kept the stoma from retracting, and the bags were extremely durable and virtually never leaked or failed.

Regards,

Mark

🤞🤞 I hope this one is successful.

Good luck, Ashton. I hope this one is going to be the last.

IGGIE

I'm in the U.K. I also had a retracted stoma and could never get a seal. My surgeon didn't hesitate to refashion it. Get onto your surgeon again, and if they still refuse, find another one. You shouldn't have to live like this.
Do you still see your stoma nurses?
If you do, get them on board. They will help you by writing to the surgeon.

Yay .... Good for you, kiddo. What happened ...

Did you rip them a new one or go elsewhere??

I went to my stoma nurses, and it was them who told me that my surgeon wouldn't do it. That was my thought: go to the stoma nurse and show them what I was talking about, and they would help me by talking to the surgeon. But they wouldn't.

I just told them straight I told them mentally it's wrecking my head, and they wouldn't let an animal suffer that way, so why a human?

Well done, Ashton. Stand up for yourself, and you will get to where you want to be. I'm sending you good vibes to keep you safe.

Regards, IGGIE

I have a permanent colostomy with a stoma flush with the skin but not exactly retracted. A deep convex base plate helps prevent leakage.

You're not being dramatic at all. Living with an ostomy is no mean challenge.