So upset: new stoma is horrible!!!

My first stoma was great but the new one I just got (9 days post-op) is a nightmare. It sticks up a bit, but is really small (down to one inch already). The real issue though is the opening is at the bottom. More than that though, I can't see the opening! I've used a mirror and pulled the skin back and everything and I can't see a hole anywhere. When it outputs, it just oozes from the seam in between my stoma and the skin and outputs right onto the skin. I did my first pouch change at home Friday morning and so far I've gotten 5 hours, 18 hours, and going on 12 hours out of the pouches I'm putting on. I'm not a rookie, I know how to do this! I'm doing everything exactly the way the did in the hospital. I talked to one of the stoma nurses this afternoon and she gave me some more tips, but she said it just sounds likes a bad stoma.

My reversal isn't for at least three months. I can't deal with this thing being like this fir that long. I'm nervous just to leave the house, let alone think about getting back to exercising and stuff when I feel better. I'm devastated. I really think I'm going to call my surgeon's office Monday morning and ask about being seen to discuss a revision. Is that crazy? I don't know what else to do. :-(.

RUN--
I have the exact same problem (and EXACT SAME SURGEON AND SAME STEP). Had my step 2 five weeks ago now and I've been okay so far.. My stoma is 7/8" and the opening is exactly the same, opening to the floor, straight down, can't see it. I have been using a regular wafer with a convex ring from Hollister, with a little Adapt paste around ring. Its lasted me 3 days with no leaks until tonight, I lasted 24 hours and leaked. The stoma nurses at CC directed me in this routine Im doing now, and a few of them had said Oh, what a nice looking stoma (apparently they always say that about Dr. L's stomas). I hateeee this loop ileo too and want my old stoma back so so so bad. It's always itchy, Im always scared I'm leaking, its a HUGE PAIN to change with so much activity and with the opening in such a dumb place.

I don't know if they'd do a revision..? I am calling Monday too to see if the stoma nurses can give me any tips. I just want my takedown ASAP. 7 weeks from now I hope hope hope.

Good luck and keep us all updated. I'm especially interested as this stoma makes me cry.

That man is a machine I'm starting to think. He has done so many surgeries that he can do it in his sleep and it's just a routine, no wonder we ended up the same. If this is good or bad, I don't know!

Definitely call him. This will be a tough 3 months unless there is some way around needing to change so frequently. Sorry you both are dealing with this.

My husband's stoma is small...3/4" but it is round and has a center opening. I was very concerned early on having read the sizes seem to be larger than this. I have told him to be very careful and really chew well since he does have a smaller one. Not sure if I am on track or not with that concern.

The surgeon had a really hard time constructing his stoma according to the detailed operative report as my husband's innards were not good at all. Fortunately it seems to be doing the job and he is a bit over 10 months since the surgery. (Keeping fingers crossed.)

Hope you gals can get this doctor to do something for you both.

I was thinking last night after reading your post about how my surgeon made a big deal about constructing a good stoma..... actually, she was saying that she thinks that female surgeons often look at the big picture more than male surgeons (what she said was "anyone can take out a colon, but to make a good stoma, that's what gives the patient quality of life," I responded that I couldn't take out a colon.....)

I don't know how true the gender aspect is, but I'm sure that the focus of that second surgery is constructing the pouch, and that for some surgeons, the stoma construction must be an afterthought..... and that's surely not looking at the big picture

Really hope you both get relief soon.

My stoma is big too, and I don't have any problems, have wondered if that's related to having few problems.... this would be a good poll here, except I don't think you can analyze data very well.... seems that what matters is that the hole can expand enough to push stuff out, and I don't know how related that is to stoma size.... well, I'll set something up.

Unfortunately, loop ileos are tricky

If I read this right, it's not the second hole that is the issue, right? I would definitely try more convexity...the reason I mention that is the process of pulling the stoma up/out can correct where the hole is. I have only had loop ileos and have to say that the one I have now (it's actually an end loop ileo) has been the toughest to figure out. It was also created by a different doctor than my first two and I think that makes a difference, too. I did find better wear time with extra convexity and switching brands to Coloplast Extended Wear...even though I only go about 3-4 days depending my activity level.

If it is the second hole causing the issues you can have it stitched closed which will keep waste from going in and eventually back out the way it came in.

Don't suffer...if you need a revision for quality of life, do it.

Loop ileos and end ileos are two different beasts. I'm in the minority because I actually preferred the loop one because it was much smaller. The rights supplies will make a huge difference. Hang in there.

Oh lord, that sounds like a night mare. Call and ask if convex wafers will help. GOOD luck. Rosemary

This sounds so awful. I hope you find some products that work for you. Do you put stoma powder right around your stoma when your skin is irritated? When I have gotten irritated areas, I have put 3 layers of powder just in a thin 1/4 inch strip right around my stoma (as opposed to under the whole wafer which can cause issues with the pouch sticking).

First, I will start with skin prep (Cavillon is the one my nurse said is most stool-resistant because it is waterproof... I use the little wipes) and put a 1/4 inch ring of that around my stoma. Then I put a 1/4 inch ring of stoma powder on top of that, put another layer of skin prep, another layer or powder etc. On top of the final layer, I put the skin prep. It will look like a 1/4 inch crusty ring around your stoma when you are done and it is dry. Then I put my Eakin Ring over that and then my wafer. Once I get my wafer on but before attaching the pouch, I actually take a little bit of stoma paste and using my finger... I sort of work it between the stoma and my Eakin Ring for some extra caulking. My stoma nurse suggested this and it works really well. I used to get this one irritated spot that never seemed to go away under where my stoma flops over. This system, though it takes a while, has stopped that. I know you already use the paste but maybe an Eakin/paste combo would work? Who knows though... your situation sounds very, very difficult. At least the powder might help heal your skin a bit.

Also, there is another new product that a nurse at my last ostomy association meeting talked about. She said it was absolutely amazing stuff for irritated skin under appliances that just wouldn't heal otherwise. Might be worth a shot.

http://www.medline.com/wound-skin-care/marathon/documentation.asp

http://www.thewoundguy.com/MARATHON.html

Did you find any answers as to why your surgeon made the stoma that way?

This just sounds so unacceptable even if it is short term....3 months is a very long time to deal with this and I totally understand your frustration. I would be so angry and so insistent that I be seen and arrangements made to fix this somehow. Sounds like the surgeon needed to take just a little more time constructing this on your behalf. Very sorry you are dealing with this. 3 months can't come fast enough to be rid of it and have your reversal.

How are you doing now?

at home? Glad you're a bit better.

How are you feeling? are you getting to grips with the new stoma at all? it sounds terrible.. just like the surgeon created a bodge job as it's only temporary. Hang in there.. hopefully as it heals it might be better?