Ok, I'm six weeks out from permanent ileo. Last two bag changes, I've had maybe 1/2 tsp blood - a little mucousy, but just, at the stoma when I remove the bag. At first I worried that maybe my stoma is detaching from the abdominal wall where it was sutured, but careful inspection doesn't reveal anything like that. then it looks like the kind of blood with a tinge of mucous that comes from touching the stoma itself. Is it possible that my appliance hoels are too small to accomodate my stoma - that in my zealousness to leave no skin exposed? My stoma has shrunk from 1.25-1.5" now to 7/8" I am using shell's system of convatek moldable convex wafers with coloplast bags. They have small holes in the plastic baseplate (they are the adhesive kind, 2-piece), so small that there really is no way to run my finger around the stoma to seal the moldable to the belly skin....they measure the right size hole in the pectin stuff, but the plastic itself is very small - ratd from 1/2" to 7/8". Maybe it's pinching the stoma a bit, causing it to bleed over time? Any other thoughts? I guess I'll call the stoma nurse tomorrow. The blood doesn't look like fresh, bright red blood, and is a bit thick with a small amount of mucous, not discernable by itself, but just in the way it thickens the blood. the bleeding also appears to hav caused the last two bags to leak prematurely (One in a few hours, the other after two days when I had just started to get three from the same appliance set up.

Thanks for any insight.

Barbara

Hi Barbara,

I often notice blood when I change Wee Willie and sometimes even when I'm just changing the bag. Stomas really will bleed very easily even just from wiping over with toilet paper. As long as you don't think the blood is coming from inside and isn't mixed in with your stool then I think it's probably just superficial damage to your stoma. Use a small mirror to check all around your stoma for trauma.

The moldable wafers really shouldn't cause this problem. I don't mold mine either because Wee Willie is the same size as the smallest wafer size. It is difficult to get your finger in around the edge of the stoma to apply pressure. Make sure your nails aren't too long as they can easily nick the side of your stoma without you realising. Remember there are no pain receptors on a stoma so you wouldn't feel it if you had accidently injured it. if you do have long nails then try to utilise something else to press the wafer close to your stoma like perhaps the rounded end of a biro or something similar. It doesn't need much pressure just enough to make sure it's stuck down all the way round properly.

Use a paper towel to blot any stoma drool (mucous) that may have built up directly before you apply your wafer as even the tiniest amount will prevent the wafer from sticking properly if it gets under it while putting a new one on.

If you are worried that this may not be the cause of the bleeding then I think a call in to your doctor is in order.

Good luck and keep us posted.

Luv & hugs

Shell

Barbara,

I use long stick q-tips to gently press down the flange after application. I wet the q-tip in water first and it won't stick to the flange. The q-tip helps push the flange down around the stoma. Just be careful when doing this that you don't poke too close to the stoma, just press/poke down around the flange part itself. I purchase these at a medical supply store. Like Shell, I'm not even molding the moldables anymore, just applying them as is. My stoma is between 1" and 7/8"--wider on top than on the bottom. I use a ring of paste too. The q-tip really helps me secure the flange to my skin around the stoma and keeps my fingers from having to get in there, which is close to impossible in that tiny space around the stoma. I use the tupperware style and really love them. I feel more secure with this style because I can wear a belt too. Everyone has their own favorite appliance.

Caty

Hi Shell and Caty. It's reassuring to hear from you both ~ thanks. And you're always right on it with support. Sorry for all the typos in my first post - obviously I'm stressed!

Big question: can I kill stoma tissue with a too tight hole? More below.

The q-tip or biro is a good idea - I'll try that. My nails are short, but the space is just tight, as you both acknowledge. I think there was a bit of mouthy drool on both of the last leaks - I had to change unexpectedly and was fighting high output after meals, so it was hard to dry it repeatedly, powder, and slap the barrier on there before it dribbled again.

I don't see any evidence of blood in the stool nor coming from the belly skin, so I can only conclude it's coming from the stoma tissue. Yep, mine bleeds with just a brush of a finger, so I'm sure it could happen. But the last two times, it's been a pool of blood sitting there when I remove the bag, leaking out to the edge of the white tape part. I do have a little ache in the area, and while I know the stoma itself has no pain receptors, something is tender there.

Could I be pinching the stoma? Maybe pulling on the belly skin a bit, choking off the little thing? Could I kill the tissue of the stoma if it's pinched? I know, I'm probably just wigged out here, but I hate to change AGAIN after two yesterday, and all the bags I ordered have the little openings, so I'm not sure what to do. I did enlarge the hole and try to fold or roll back the waxy stuff as per the DVD instructions, but it doesn't stay rolled back when I put the barrier on. Maybe I should just go ahead and change it out of the worry I feel. If I really can't do the stoma any harm, I'd wait it out and see what happens....Sorry to winge - it's the first real thing I've had to worry about, but with my history of always finding the most difficult path....you can see why I'm concerned. I did email the stoma nurse at UCSF....Won't hear from her til tomorrow afternoon.

Gratefully,

Barbara

My understanding is that yes, you can damage the stoma by having the hole in the wafer and bag too small. It is important to have it sized exactly right and just slightly larger than your stoma, filling in any gaps with stomahesive paste or Eakins seals.

That said, it is normal for the stoma to bleed easily. Keep a close eye on it and if it turns dusky then you are certainly choking it.

Jan

Barbara,

With the moldables the molding/turtlenecking that occurs is really nice and soft. I have actually taken the bag off a couple of times and finger swept the tip of the stoma to remove stool and the moldable stuff is always soft and gushy. I don't do this anymore because I want the moldable stuff to stay put and do its job. Also, I'm the kind of person that once the flange and bag are on, I don't disturb it (take it off, change it, squirt water in it...) until I'm ready for a new one.

Now after all that being said, the moldable might be a little tight initially but in a short while it begins to do its turtlenecking and gets nice and soft.

I think you should talk to your ET nurse or your surgeon about this one just to ease your mind one way or the other.

Barbara, it's going to be okay. You're just hitting a few bumps in the road right now. Hang in there; you're very strong.

Update: Barbara and Shell, I just realized that I have a new moldable product that is not convex. The stock number is (Edgepark) 51411802 and I remember that when I asked the gal from Edgepark why I couldn't find this item number in their catalog, she told me that it was a new item. I have no plastic piece in my moldable. So Barbara, it is very possible that you are using a plastic moldable that may be too small. My whole moldable is soft as it turtlenecks; there's no plastic insert. I honestly thought we were all using the same moldable product, but now I see that I'm not using a convex moldable because I don't need that it. My stoma sticks out nicely from my belly. Sorry about my confusion...

Caty

This message has been edited. Last edited by: Caty,

Hi Barbara,

When I first had Wee Willie I did actually manage to strangle him by cutting my wafer too tight. That was before I'd switched to the moldable ones. Because the edges were so sharp and Wee Willie points down he got cut underneath. Although I didn't feel any discomfort at the time Wee Willie swelled up like a beef tomato with the trauma and soon became very painful. I took the wafer off as soon as I felt uncomfortable and had my good friend (who's also my stoma nurse) take a look. She's the one who put me onto the moldables. He still has the scar to this day. I haven't seen damage like that since I switched to them.

Keep a very close eye on your stoma and if it changes colour at all, either becoming very dark (or black) or looks very pale and flacid then you need to get medical help. If it's still a nice moist pink/red colour then that indicates that it is still healthy.

I think Caty is right though, you should get your ET nurse to take a look even if it is only to put your mind at rest.

Good luck and keep us posted.

Luv & hugs

Shell

Hi Caty and Shell,

Well, maybe we can all use a grin out of this. I just couldn't bring myself to remove the whole durn thing after changing it twice yesterday....went to see a film, emptied at intermission, was still a little sore and a bit worried about it, so resolved to remove the bag and check on the stoma when I got home. Got out the fresh supplies - a new bag in case that was all that was needed, a new base plate if the little guy was hurting or discolored, the powder, a pile of paper towels, a dampened q-tip - I was READY! So, peel off the bag. Everything looks OK, but wait ...is the stoma shadowy? a tiny bit dark, irregularly? Is it the lighting? Am I obsessing? Hmmm, what's peace of mind worth? Poke the new base plate under my arm to warm it up, remove the old base plate, roll up the end of the new bag, carefully try to measure, the darn cardboard holes falling apart before I get a good fix on the size, roll down the turtleneck per instructions WITHOUT first removing the clear plastic covering, but working against it as directed. Get everything turtled up nicely to somewhere between 3/4" and 1", powder the skin meticulously, sort of pulling aside the stoma carefully so as to get under that damp cauliflowered edge. And apply the base plate, holding it warmly for 30 secs as the DVD advises. Smooth around it with the qtip. And look down really clear-eyed to see that I have applied the wrong base plate for an adhesive bag. I have the tupper one on, applied as only a fanatic can! Frantically scramble around among excess hospital bags, find two that are tuppered and compatible. And just grin at my compulsive self. This is a transparent bag, which I probably deserve at this point! At least I can watch what appears to be a perfectly healthy stoma, and I now know how to work with the moldable correctly... Sheesh! It was definitely too tight, and feels fine now. No necrosing tissue, just a weird mind....

And Caty, you're right - I, too, thought we were all dealing with the same moldable. The one pieces I ordered are convex (which I need) and have no plastic to get in the way. The adhesive two pieces are the older style, convex, but with the plastic too close to the stoma hole, so I'll check on the new number for the next order in...um...well, being compulsive, I ordered 3 mos worth of these!! Ah, well, it's all an exercise in breathing, isn't it...?

Now I also know I don't need to see the stoma nurse, but have figured out the other part of my recent dilemma, the prednisone dosing question, thanks to lots of help from the board on that. So, I'll see an endocrinologist and be back on the path. Good thing we're in this together, cuz I sure needed your support today! Sigh....

Barbara

Hi Barbara,

I'm so glad that you're stoma isn't about to fall off!

Yes if you have a stoma that is bigger at the top than at the base you will have to roll the moldable back (as you described) and then once in place you can unroll it as necessary to a nice snug fit around your stoma.

Caty, I've known about the flat moldables for quite a while and they are great for those stomas that don't need the convexity to push them out. I would try them myself but even though Wee Willie is quite long for a stoma (1.5 - 2" at full stretch) he does tend to retract and telescope at times and when he's retracted he totally disappears below skin level. It was this telescoping and retracting that kept getting him caught on the sharp edge of my other wafers so I am truly greatful to Convatec for inventing moldables in the first place.

Right so just to clarify, I use Convatec's Esteem Synergy Convex Moldable wafer with the adhesive coupling, so is this what you guys are wearing?

Barbara and Shell,

Too bad we can't all get together and talk about all this in person. My box says Sur-Fit Natura Moldable Durahesive Skin Barrier with Hydrocolloid Flexible Collar, reference #411802. I'm in the 7/8 - 1 1/4 inch size hole

Warmest regards,

Caty

I agree Caty, it would be great to be able to get together to visually compare stories and products.

Anyway, here's a link to show you the exact wafer and bag that I use. They are both UK sites but basically have the same names as on the US sites. I'm not sure if they have the same order numbers though than from yours in the States.

First is the Convatec wafers:

http://www.convatec.co.uk/convatec/jsp/CVTBProductDetai...9&lang=en&country=GB

And here's a link to the Coloplast bags that I team them up with:

http://www.coloplast.co.uk/ECompany/GBMed/Homepage.nsf/...05a314c?OpenDocument

I much prefer these bags than the ones that go with the Esteem Synergy wafers for several reasons. Firstly they are more secure because they have a double gasket on the adhesive coupling. Plus they are very quiet, very comfortable and very descrete with the hide-away velcro outlet.

Shell