Output coming out through the side?

[joshw2011]

Hi, my ileostomy is still pretty new, just under 2 months. I'm trying out different samples, and put on a new one yesterday. Within a few hours, a little to the right of the stoma some stool had gotten just under the seal, and a few hours later a little to the left as well. I just thought I didn't get a perfect seal, but now I'm not so sure.

The skin around my stoma is interesting. A tiny circle right by the stoma (maybe 1/8 inch) is pretty dark, and then an inch or two further circle around the stoma, the skin bulges out slightly. It has always been like this since the surgery, and I just assumed it was something that would get better/go away as time passed, since the surgery was so recent. However, it has not gotten any better, so now I'm starting to question it.

My stoma will feel funny at some times, like it wants to output, but won't, and then it will, but it feels like it's from the side, not the actual hole in the stoma. Now, I've actually watched it and it even looks like it's coming out (not often, but sometimes) a bit on the right side and a little bit on the left. Like there's a hole where it is attached to the skin for stool to come out...

My question is, is that even possible? It doesn't seem it to me, but that;s sure how it looks like it's happening, and it's concerning haha.

My stoma, I should add, is quite long. It sticks out probably 1.5 inches, which makes this even more odd, because it will be hanging/pointing down, well away from the area where the stool is coming, and gravity says it shouldn't be there.

It's all just so odd and doesn't seem possible, but here I am. Just curious if I need to go see the surgeon again and get this fixed. Thanks.

 

[Terriernut]

Just had a post about this from our own Little Free Bird...She went to AE about it.

Are you cutting the holes too tight perhaps on your appliance? Are you using barrier rings?

 

[littlefreebird]

wow how strange, i posted about this about a week ago and i seemed to be the only one this has happened to.
i have had my stoma for 8 months and just last week i saw output coming out of the side where the stoma meets my skin. just before it happens i feel a slight build up/ pressure feeling. the majority of output is coming out of the top but there is definatley output coming from the side too.
i saw my stoma nurse and she didn't believe me she looked at it and said she couldn't see a hole. she said if i was convinced i did see it, it may be a puncture or perhaps my stitches had come loose ages ago and it has only opened now. she then told me my bags were way too tight and this have may contributed.

i see my surgeon on thursday afternoon- i'll let you know what he says.

i panicked when i intitially saw it! it definatley shouldn't be happening and you should contact your dr straight away. in the meantime put on plenty of barrier spray and cut your bags a little bigger and this should accomodate the puncture.

 

[joshw2011]

Hi, thanks for the replies! I just read through your thread, and it sounds exactly like what is happening for me! I will feel a build up of pressure, like it's ready to output, then it typically does normally, but will sometimes come out the side. A tiny bit on the left and more, up to quite a bit, from the right side. I guess I will be calling my GI and surgeon... I have a GI appointment Tuesday so will definitely be bringing it up at the appointment.

My bag might be a little small, but I don't think that is the problem. I will be putting on a new bag, with the hole definitely big enough tomorrow. My stoma is like yours, very long, 1.5-2 inches long I would say, so it definitely does not seem like I am confusing the output coming from the top. I wonder if it is the stitches? Maybe a couple got ripped out, causing the skin to look funny, because on the right it looks like it might have a little hole there, which could explain the output.

Definitely let me know what your surgeon says, though. I will let you know what I hear as well!

Oh, I don't use any sort of barrier ring or anything, just the wafer and an adhesive wipe thing before putting it on. I'm not really sure what a barrier ring is haha

 

[joshw2011]

Thinking of you and hope your appointment goes well and gets you the info you need! I have an appointment with my surgeon tomorrow, and my GI on Tuesday. Now we just wait to see what they say!

 

[Terriernut]

Josh, I hope when you have your appt they can get a stoma nurse to help you out too. Good luck with your appt!

 

[joshw2011]

My surgeon told me that I "have bad Crohn's" haha. Made me feel special.

He said I have two fistulae. He said it could have been caused from a problem with the stitches, or just from the Crohn's. He said for now, as long as my skin stays healthy enough with the output, and there are no signs of infection or abscesses or anything, and they continue to drain, then to just continue my Crohn's treatment. He said steroids can prevent healing, but it's more important to use them as much as I need for my Crohn's overall, and not to stop them sooner just because of the fistulae.

He said, obviously stoma revision surgery is a possibility, but he would rather wait for that and see how my Crohn's treatment works, first. Partly I think since I'm only not even 2 months post-op, and you can only really do stoma revision so many times. I agree with him, don't want to go through more surgery if I don't have to. And it's not affecting my life, really, so it's nothing that needs to immediately be fixed.

So now I just wait, I guess! I'll see what my GI says on Tuesday, because I don't know if he will want to have me continue with just the 6-MP, or maybe go back to Remicade, something stronger for fistulae.

 

[littlefreebird]

josh, have you been having any crohn's symptoms?? can you actually see holes where the output is coming from?

my surgeon said mine looked like a fistula and i'm having a small bowel series to investigate.

he said cause i have had my ileostomy 8 months if thee stitches had come loose i would have noticed the output long ago- so i thought thats what yours may have been.

hope you don't need surgery!!

 

[joshw2011]

I had been having some pain a month after surgery, but nothing too much. What was bad for me was very sore gums and throat, making eating a pain. I started 40 mg prednisone which took care of everything, but now the gums and throat are getting bad again. Other than that I'm not having any symptoms!

He said he can't say what caused the fistulae, most likely stitch problems or just from my Crohn's.

Yes, I can actually see the holes though, and sometimes catch them in the act of outputting! Odd seeing it come out (potentially) three holes at once, haha