Hi Chris, First thing I will say is be careful what you put on your skin which could lead to more problems. You have been having a a bad run with this and as a result are may be trying to many items to try and cure. A stoma can swell due to a blockage! but I don,t think that's what you have. it can bleed if it rubbed or the wafer is to tight. Measure your stoma to make sure you cut the right size. I remember you had a dip and was using the ring to fill. only use that you need cut down on to many products. Next change take yer time remove all and clean well and dry. If I remember was their a n online call you where to do with a stoma nurse. you do need help to sort this. if your own nurse is not meeting yer needs their are other routes.

Chris,

Hi. I am so sorry to hear of your ongoing problems. This sounds like a real challenge. All I can really offer you is my support. I don't know ( obviously) whats causing the swelling and bleeding.

I remember a while ago we talked about prolapsed stomas here. Do you remember that? Maybe Eric can find it.

I can't say thats whats happened to you, but might be worth looking at. Although if the nurse said your stoma looks 'normal', I don't know. Maybe you could find that help line john mentioned. ( above post)

Bleeding around the stoma is easy to cause when you are changing and cleaning that area.   Bleeding  can take awhile  to stop. The bleeding does need to get under control before you apply your wafer as that area needs to be really dry.

Let us know how it goes. Best wishes .

I want your sense of humor to return! Selfishly

Posted by: Chris

My WOCN hasnt really offered much help, she says its looks like a normal stoma. 

Hey, Chris. Sorry to hear about these difficulties. 

In my non-professional opinion, what you're describing is NOT normal and I would seed a second (or third, or fourth) opinion on the matter until it's properly addressed. 

You can change supplies all you want, but if your stoma is swelling up then there's very little that a supply can do to help - you need to find out why it's becoming swollen and then direct your efforts towards solving that problem.

Anyway, just wondering if anyone has dealt with this before.

I've had my stoma swell up temporarily when I'm really active - I assume it's just an increase in blood flow. It does bleed when it swells beyond the hole I've cut but stops after a few minutes. 

There are likely several reasons why your stoma may be swollen, but I'll go back to my first point and say that the cause needs to be found before you can think about taking steps to resolve it.

Any chance that your doctor can give you a referral to a stoma nurse at Mt. Sinai? 

Thanks all 🙂. I did investigate that telenurse but put a stop to it when I believed my problem was solved  once i lostla few puonds. Perhaps I need to lose more. Perhaps I have a few different issues going on at once. 

I've put in an email to my GI explaining my problem and I plan on calling my nurse tomorrow and discussing this further. Last I saw her she said it looked normal and had me try a few other products. They haven't worked however. She noted that it seemed swollen but was probably because of the convex wafer. She gave me flat to try as well. Same outcome however, and I am now swollen without wafer. (She doesn't know that yet, so I've got to give her the benefit of the doubt before I go to Saini) I'll post gross pics of I can figure it out. 

Anyway, I'll keep you posted.

If I get this pic to work.. that's this am at 41mm. Last week I was able to put the 35mm on there with skin showing.  

I was bleeding a fair bit this morning too. I think the old wafer (really old... Like 8 hours old, lol)  just cut the bottom because I was able to stop the blood a few minutes of pressure.

The pic isn't happening. I'll try on my computer later 😂

Chris , wow, your scared even frightened. Let us look at the situation with calmness. 

1. Go to another wocn. Yours sounds like she is blase and full of manure.

2.slow down the removal of the old wafer. If you pull too much,  you will tear the skin. Gently press down on the skin to release the wafer . Press and lift a little bit at a time. 

3. Not seeing the situation,   i can only guess at what is going on. Fortunately,  skin heals rapidly, so do not panic at what is going on.

4.  This may sound crude. But I once felt that i had to "soak" my stoma in the bath. It got a bit messy, but it served the purpose of calming the skin down. I showered afterwards. A half hour ought to be good . This is most important,  afterwards,  you must allow the area to dry. Pat with a paper towel,  do NOT rub! Dust and even crust with stoma powder. By the time you are finished , you would not see raw seeping skin . 

5. Measure the stoma. Do not skip this step.

6. Follow the instructions for cutting THIS hole. Use an eakin ring and fit it snugly around the stoma. If the stoma has output,  start over patiently .

7.fit wafer over stoma etc.

Patience is a virtue. Keep trying. 

The key is dry skin.

Good luck.  Let us know tomorrow  and further your progress,  please. 

Z

Thanks :) (I smile, but Im going nuts inside)

Ive changed twice today and Im lying here with the itchy feeling.  But its quite active and I dont want to deal with changing like that right now.

Its amazing how this can wear you down.

Im wondering for my change tomorrow... do you think it really matters how large I cut the wafer if Im using a ring on the skin?  Im thinking I want to keep any sharp edges away from the sstoma and if the ring is doing all the sealing, maybe I can just cut the wafer at like 50mm.

Anyway, its comforting that there are other people out there who can relate to what Im going through. This is freaking brutal. It's so insane..  I might have mentioned this, but I remember when I was getting 5 days before a change, you guys had said I was fortunate and that some of you only got three days.  I remember thinking then... wow.. Im glad I dont need to change that often!  Freak..  I WISH I could get two days right now!  One full day would even be nice.

Anyway, thanks again

Hi Chris, the wafer can be cut a few mm bigger when using the ring, but its a problem you really do need to be sorting with medical staff. I agree its wearing the life out of you!! Please pick up the phone and make an appointment.

Perhaps you also have a fungus. Try dusting with antifungal powder. I have used athletes foot powder. If it works, great. If not, didn't lose much.

Posted by: Zvitusk

Perhaps you also have a fungus. Try dusting with antifungal powder. I have used athletes foot powder. If it works, great. If not, didn't lose much.

Just to be clear, Chris's current issue has to do with his stoma being swollen.

Antifungal powder is often good when fungus is suspected (and confirmed by a stoma nurse), but I don't believe it would help in this case.  ;-) 

Hi Again, Chris. 

I hope you got through the night O.K.

It will get better, but I know this kind of hell well. When nothing you do seems to helps and things get progressively worse. It is depressing for sure.

I am happy to hear you plan to see the stoma nurse again. This step is REALLY important. Get a professional assessment as to what is going on.. I think part of the problem of figuring things out is that some of these issues lie between medical specialties. The G.I people do your IBD or whatever illness led you here. The surgeon builds your stoma and removes the bits that aren't working, and the stoma nurse is kind of left there to sort out problem. And as we all know, these problems can be varied and difficult.

One thing you might do until you get that help is to go back and think of whats happened and where you are now. The nurse will want to know this too and it might help him or her to assess your situation.

 Since you you had this under control before, something has happened  that has caused that not to be the case. I might be something you changed, or might just be a change within your body that you have no control over ( thats where the professional help with be extra useful).

Think about all the things that you do with respect to that now pissed off stoma. I can't begin to guess why it is swollen though, so bear that in mind. Having all these leaks is certainly not helping though.

Pay attention to how your stoma has changed since surgery,how the skin near your stoma has changed, how your body has changed, the appliances and products you have used and HOW you are using them, the exercise you get, the food you eat and WHEN you are eating it. I know this sounds tedious and self centered, but you will have to pay attention to these things until this gets sorted.  Something is causing it. ( whatever IT is..and that will be good to find out).

Start a log book and write everything down. Even how you feel emotionally. I think all things add to this stew thats boiling ( maybe not the best metaphor). You will at least then be able to speak to whatever heath care professional you get to see.

And when you think about possibly having been better off before  your surgery, remember that your disease might have progressed to be even more debilitating by now.

I am really pulling for you and your family.

Hi Chris, Dona has it spot on, follow her pointers

Hey. Thanks again for all the suggestions.  Im trying to keep track of what has changed... its tough though..  my mind races at all the possibilities. Part of me thinks it could be Crohns flare. Part of me thinks that maybe I was cutting the flange too tight and I have a partial blockage and when it swelled it cut the stoma pretty bad, and now its just taking days to heal.

Its weird though..  I suddenly have a problem getting a seal, then my stoma swells and bleeds..  This cant be the first time this has EVER happened.  There must be others like this.  Must be.

What royally sucks is -  and I dont know if I mentioned this - but Im supposed to leave on Friday for Myrtle Beach with my family, but im getting pressure from everywhere to cancel the trip until I figure out what is going on.  I hate that I may have to do that because of this stupid thing on my stomach. Why couldnt this crap rear its head when I get back?

Anyway..  To top it off, my GI called yesterday and I have no idea why, but I missed the call.  My ringer wasnt loud enough or something.  She did leave a message however saying that my bloodwork looked otherwise normal but she might want to squeeze me in on Thursday for a scope to see if crohns is active in my small bowel.  She said she'd try me again today.

When I changed my appliance this AM the stoma did look a little smaller, but the surface area was bleeding a lot.  If I put a paper towel on it, it gets quite bloody. I usually get a spot of blood here or there, but most of the surface of the stoma spots the towel now.  So it cant be good.

Im also feeling that fatigue I felt with Crohns..  I feel like I want to lie down to take a nap, but I dont think I could nap if I lied down.  I dont know if that makes any sense, but thats what happened to me.  I know everyone is different.  As I said, my mind is racing.  Im trying to blame the fatigue on hydration because I was watery for many days.. I was also drinking a fair bit of booze during that time, lots of chocolate sugar and I didnt have any electrolytes left to supplement. So it makes sense that Id be feeling unwell.  But why the bloody stoma?  So I dont know.

Im sorry for talking all over the place here.  Im having a difficult time with this and appreciate the outlet to vent and express my concerns and thoughts. Anyway..  Ill return with more when I talk to the DR.

Chris, 

Venting is a very good activity. 

Please post whatever happens. 

Z

 Hello again, Chris,

As Zvitusk says, venting is an excellent activity.  Both of your mind and of gas build up. 

I can see this is very distressing, it would be for anyone. Having bleeding anywhere is upsetting, as well as upcoming doctors appointments ( even if they are necessary and helpful). I think we are all 'gun shy' at this point.

Your upcoming vacation is putting pressure on you to get this sorted out. Thats is just true but unfortunate timing. Anxiety is a horrible thing to deal with. You do have reason to be anxious, but maybe you can begin to get a grip on it after you have seen your GI doctor. Take pictures of your swollen stoma and take them with you. Try to write down a list of questions to take with you too.. I used to get 'brain freeze' at the doctors office and forget the big picture.

( My husband was always there with his laptop taking notes.. a REAL help).

A scoping of your ileum sounds like it might lead to useful info.That would be a good thing. The sooner the better. Not knowing is the worst thing. I got an illioscopy about 9 months after my surgery. There was just some ileitis ( a bit of inflammation) in my lower ileum. Nothing to worry about. It could be something minor like that. So, try not to worry too much about things you can only guess at. ( difficult, I know). If it is a Crohnes flareup, there will be treatment for it. You can't make good choices without good and true information. ( and conversely, you can't even worry 'properly' about stuff thats maybe not happening)

I am wandering here! Sorry. Let us know how it goes, PLEASE!

Thanks Dona..  Yeah.. I should really bring my wife along with me because I NEVER ask what I intended on asking, nor do I ask what I should ask during the appointment.. furthermore, I completely forget everything the Doctor says to me, so I really shouldn't even bother going to the appointments.

That being said, My DR did call me tonight and recommended the scope for Thursday.  She said its possible there is activity in there, but regardless we should be doing a scope now anyway because its been 9 months since my surgery and she said its typical protocol to do a scope 6-9 months post op.

I decided to postpone my trip for a couple weeks, and everyone is okay with that.  That reduces the anxiety a fair bit because I hated being responsible for cancelling the trip.  But now I should be able to figure out whats going on and take action before going.  If I have to go back on some drugs, so be it. (Even though I only have an ostomy because the drugs didn't work.. but Ill cross that bridge if/when I come to it)

Anyhow, I'm in better spirits now that I know I have the scope coming and the trip isn't looming on Friday.  I can tell that the stoma is still bleeding because I can see the reddish liquid smudge against the transparent bag, so Im not TOO excited, but still, Im better than I was.

Hey Chris, I am happy to hear you are coping better! And that you are getting scoped tomorrow. That will be helpful for sure. I remember being told that once my 'inflammatory load' was reduced ( AKA colectomy), the immune suppressant drugs would work much better.

I turned out to have UC so haven't had to try any of them again, but its good to know you can get a kind of reboot on that.

Good you have rescheduled vacation too, the best thing for your whole family will be to get this all sorted out. and then have a fun vacation.

Good luck with the scope, Chris! 

Thanks! It went well.. sort of.

So.. riddle me this. I have no evidence of active Crohn's. My blood work is fine. I had an MRI a while ago saying everything is fine.

But... I've been having VERY watery output, regular leaks for some strange reason I can hardly figure out, I've been feeling fatigued, my joints are just starting to flare up to a point I can't sleep well or even walk after a 20 minute drive.. my stoma was quite swollen and bleeding... 

I must be going nuts. Of course the dr did the scope with my wafer on. I am too much of a wussy to ask her to remove it.. and she said there was no blood and everything looked fine.

I look like a psycho. I feel like a bit of one too. But I'm not imagining these issues. I can't imagine a 7mm larger stoma and blood! 

Anyway.. I guess the good news is that there isn't any active Crohn's, which really concerned me.