Surgical repair of a deeply recessed stoma?

I think that I've heard of a few people needing their stomas revised by their CR surgeons because they have recessed so much.

They can be hard to predict where the stoma will end up in length because our intestines expand and contract as a normal digestive process to move the food along.

What is your current set up? Convex wafer?

What really helped my skin is the coloplast protective barrier sheets. It's just a big sheet that goes on first and you cut a hole through it for the stoma. /www.coloplast.us/brava-protective-sheet-en-us.aspx

Does he have an ostomy belt? That could also provide some support for his stoma (pushing it out further).

I think a revision is a very small procedure. Maybe it is the best thing for him. It should be relatively easy to recover from and improve his health.

I'd ask for samples. See if they work first before you buy them (unless you are over your deductible with your insurance). If the recessive stoma is the real issue then I think the barrier sheets may only be a bandaid and he should have surgery.

I really liked the Coloplast accessories. Also, their protective strips (different product) really kept my appliance secure.

My takedown surgery was 45 minutes; it consisted of removing my stoma, then connecting my small intestine to my j-pouch, and then sewing up the stoma opening. I would think that his surgery would be similar in time or less. My digestive tract had to recover from the surgery since he would be still using a bag then I'd think it would take much to recover from.

Have you sent your husband’s surgeon photos of the recessed stoma? When did he have his surgery?

Maybe you want to force the issue and check him into the ER where he had surgery

It's no way to live, I would go to the ER and demand a fix. Get a different surgeon if necessary, you already admitted that the surgeon is kicking the can down the road. Even if the surgeon gets mad, who cares? He already did the main surgery that your husband needed. There are plenty of other surgeons in Chicago. My only concern is that some won't touch other surgeons' work for at least a year, at least that was the case with my hip surgery, which is a common practice in Ortho surgeries.

All the bag changing is making his skin worse, I know there is nothing that you can do about it. I would walk into the ER and throw my hands up saying that I need help and put the ball in their court.

We went downtown today (2.5 hrs round trip...) and saw our ostomy nurse. When I spoke with her on the phone this morning, the first thing she said was, "I hope you sent these photo's to (your surgeon)!" Unlike her usual demeanor, she was very friendly, sympathetic and compassionate. (Telling) She gave me 11 steps with some crazy products that I've never heard of before. (Like skin adhesive that you use like rubber cement called 'Osto-Bond' by MOC.) My husband said that she poured everything in there short of concrete. She said that she's determined to help us, even if it means sending us to her mentor at Uni of Chicago. She wants us to contact a new company in CA called Nu-Hope (may the force be with us) that has a huge selection of ostomy supplies, including wafers with 'deep convexity' and your choice of adhesive strengths, normal to 'extreme'.

She said that this is not a long-term stoma and that if we decide to make this colostomy permanent, that he'll have to have this revised. However, with all the surgery he's had, and all the procedures he still has to have, surgery right now to try to fix this is not an option. Her goal she said, is to try to get something to work for 24 hours at a time. She encouraged us to be bold at our next appointment with the surgeon and had me take more photo's to show him.

In case someone else is reading this who has the same problem, let me know and I'll share the steps in more detail and tell you the one thing that I learned about the size of the opening on the wafers.

We are still investigating other doctors and made several phone calls today. All of your concern and replies has really helped us through this. Thank you all!

Ok. Maybe not sue them.....yet. But they would know my name. Very frustrating. Drs get paid well. If your making big $ taking care of me I expect a lot We put Drs up on pedestals. Some don't deserve it. My visiting nurse is also getting me the crazy glue(joke). Some adhesive that should help with keeping wafer tight to skin. Good luck. Prayers for u both

Thank you again for your responses and prayers. Keith, great advice on the printout and notes. I used to do that with my kid's pediatricians. We'll have to sit down and make a list.

Our doctor is very well known for 'fixing' this cancer (ultra low rectal tumors) and he has a great record of patients not needing permanent colostomies. Our nurse yesterday reminded us of this. But he didn't get good margins during the big surgery back in May and had to go further around the sphincter than he wanted to. He still felt confident that he was successful overall. Since then however, it's just been one complication and procedure after another. Your head would spin... fistula's, ulcers, severe stricture and severe reaction to his chemo. No fault of anyone, just the way things happened.

All that to say that while I feel like he's always had our best interest in mind, he can be a little prickly when you question him. Hopefully we can find a way to talk with him to get answers without being offensive. The first time I saw his stoma post-surgery, I was shocked! My first thought was this looks like a butcher job. I just wish he had explained, 'I had some problems with adhesions and scar tissue, so I did the best I could', or whatever! to explain why it's such an impossible stoma. I think our nurse feels the same way. She told me that our questions are all fair questions.

She did explain that in order to create a healthy stoma, they have to bring up mesentery tissue to provide good blood flow, which we have; his stoma has great color. It just looks like it's getting pulled in from the inside. It's actually creating a fold in his skin on that side. So maybe because of all the extensive surgery he's had, this was the only way to make it work. I would just like to know that! It would certainly calm our mental and emotional freak-outs!

My prayer is that my husband can get back to tennis, golf, jogging and going out to dinner with his wife . I can't imagine living in fear that his bag is going to blow. He certainly deserves at least that, right!?

Anyway, the 'fix' that the ostomy nurse did yesterday is holding... 18 hours now!

I can't believe how helpful this forum is! If nothing else to vent all the madness that's floating around in our heads!

-Bobbie

Bobbie,

Since your husband will be there I'd print out at least 3 copies, so both you and your husband have copies to go over with the surgeon.

After a 21 day hospital stay for a UC flare, I went into my GI's office with the question list, symptoms, etc and he just smiled at me when I gave them to him, he thought it was the greatest thing and said that he'd never had a patient do this before and lets go over them together. He didn't have to look at a computer or medical records, we just sat and talked face to face for about 30 minutes. My list was really detailed, I probably spent 2 or 3 hours putting the list together.

You have to remember that many of these surgeons are weird people, they're use to working on people when they are unconscious and that is there primary job. Many of them are not very personable and are perfectionists. They don't like to be questioned about their work.

The second day after my Colectomy I was up and walking around for one of the first times and it was about 7AM. I bumped into my surgeon in the hallway making his rounds and I started asking questions, he looked down at his watch and told me that I had 60 seconds because he had to be downstairs. He is the Chief Surgeon for the Hospital (not colorectal, but the entire hospital) at one of Major Medical Centers in NYC, I was horrified to be treated that way. We later became friendly and he did a lot of very nice things for me.

I agree it's not fun but its true there is always at least 1 problem with a surgery like this. Your husband is lucky to have you by his side. Having someone care for you is half the battle. My boyfriend almost took off the doctors head after surgery for not giving me pain meds right away. The surgeon didn't write up any after the surgery like having a 5 hour surgery wouldn't require pain meds lol. I agree surgeons are differently different kind of folks. My stoma is perfect but I worry about the next operation and getting an loop ostomy so I plan on buttering up my surgeon now and telling her what a beautiful end stoma I have now and if she can make my loop stoma the same way.

Good luck I hope it holds more then the 18 hours.

I thought vomiting after surgery was normal especially after CR surgery. It's happened during all of my surgeries, I always get ileus and I even got it after my hip replacement. I refused to leave the hospital after my hip replacement surgery because my digestive tract wasn't working very well, so they let me stay another day and that night I started vomiting. 2 more days in the hospital.

I really try not to get too upset about things, I usually try to joke about it and stay upbeat about it.

I think walking on the treadmill is a great idea just as long as your husband doesn't sweat too much and causing problems for his bag losing its adhesion.

It's great news that the bag is sticking for 4 days. His skin will start to heal. I'd probably follow up with another nurse visit in a week or two to get his skin looked at from a professional.

Yeah, the vomiting was directly attributed to the quick diet progression. (At least for this surgery!) After a horrible experience in May that lasted 2-3 days, we had our anesthesia team mix up a great combination and he had an epidural so he came out of surgery feeling great for the December surgery and again this time. When he started with the clears, he immediately got sick. Our doctor even apologized and took the blame for that one. After a couple days NPO, he felt much better and started over. He had a Picc line for nutrition at that point, so there wasn't danger of malnutrition anymore.

Fortunately we have kept great humor all along. We have two grown kids and from the beginning the butt jokes came out. What else are you going to do?

But I have to confess, I'm not going to tell him about the perspiration causing a problem. His identity is wrapped up in his workout routines. He's a basket case without it. I don't want to make him fearful... we'll cross that bridge when it happens.

Did the change today! I had to keep referring to my notes to be sure to do everything in the right order, rubber cement and all. 7 hours and holding! His skin is looking a little better and although the stoma looks pretty crappy still, it's not in as deep of a bowl as it was. That's not to say that it protrudes AT ALL above his belly...

We've been married 37-38 years as well! MayDay82... Thanks for the sweet words, Clo! And I couldn't do what I do without support from my family and friends, who have all been absolutely incredible! The diagnosis of 'cancer' has afforded us a lot of attention... my heart goes out to those of you with long-term chronic illnesses that are not discussed or shared publicly. You suffer in silence without the benefit of an attention grabbing disease.

Bobbie

Hey Bobbie,

So sorry to hear of all the troubles your hubby has gone thru. I'm glad the last bag changes went well, I hope it has continued. I just recently had a colectomy with an ileostomy on Jan 29th at Northwestern. My surgeon was great, even when I questioned some of his decisions. He always explained his reasons why and it always made sense and I felt better. I really hope you are able to get better answers to all your questions. This is a big life change and its all new, so its scary. Keep us updated of your hubby's progress. Good luck.