Got ambulance to hospital last nite :( possible fistula tract on stoma?

[littlefreebird]

got ambulance to hospital last nite possible fistula tract on stoma?

i have never kept my bag on for as long as 8 days until now. the bag seemed to be secure really great i saw no reason to change it, i don't know if that has contributed to the problem.
last night i changed my bag after having a bath.
about 30mins later i felt a really hot trickle on my tummy, i looked down and the bag had begun to leak. i didn't panic, it was my 1st ever leak and i went to the bathroom to change the bag.
i was holding the stoma with tissue while i sprayed my skin i noticed a gush of output coming out of one side of the base of the stoma (where the skin joins the stoma). i sat on a chair and watched it for the next 30mins. it was definatley coming out from both the top of the stoma and the base. i freaked out and foned an ambulance (as i could not drive myself and walk into a&e holding the stoma- cause bags wern't staying on)
i was in a&e for 7 hours and nobody really knew what was wrong, they said it was 'a matter for the specialists' who do not work weekends!
i've since been sent home to manage, i've cut the bags exta big (around 35mm rather than my usual 25mm) to make room for the leak, and just put on tons of barrier cream and spray to protect all my skin that is exposed.
i looked at my notes and it says there's a possible fistula tract?
on the base of the stoma you can see a tiny lump on the left (my right when i look down) where the base meets the skin- the leak is coming from the gap about the lump and base if you know what i mean?
now i'm panicking cause they have mentioned the words, surgery and theatre. cause its still sunday i have to wait until tomorrow morning and try and get in to see my surgeon this week- he will make the decision!
very upset, was doing so well and i'm due to start a new job next monday!

the dr said it was a common problem but since i hadn't heard about anybody here having one i panicked and that was why i went to hospital straight away.

 

[tiloah]

Egads! Ugh I hate that they just send you home when they don't know what to do with you.

Sorry this is happening to you now. I hope they get you sorted out, hopefully with minimal intervention. *hugs*

 

[Nyx]

I don't have any advice as I've never had that, but kudos for you for calling the ambulance and getting yourself taken care of (sort of) right away. Hopefully the specialist will have some positive news for you and a solution. Please keep us posted! Take care!

 

[littlefreebird]

i've read:
"Fifteen of 214 patients with an ileostomy constructed during
the course of Crohn's disease developed periileostomy fistulae.
In each case this was the consequence of recurrent ileal disease.
All periileostomy fistulae require resection and
reconstruction of the stoma. Superficial fistulae with relatively
smooth skin around the stoma may be reconstructed using the
original stoma site"

ok....no more google for me tonite....i feel completley fine!! i don't feel the crohn's has come back in the slightest...it's literally just the leakage.

thankyou for reading!

 

[Terriernut]

Oh Hannah! Lostnut has this. I will email her and see if she can help. But I can say they just let it take it's course for her...no surgery at all.

It may not be a fistula at all. You could have developed a wee tear in the skin, and developed a serious amount of infection under there. I'll get Heiki (lostnut) to respond, dont know if she's home right now though.

Dont panic yet. Talk to the experts, and leave an emergency message for the stoma nurse, and IBD nurse as well. Bless you!

 

[Misty-Eyed]

Ah Hannah. All I can say is at least you feel well! I'm guessing your stoma looks well? I just hope they can fix it with minor issues! Please keep us updated!!!! I hope everything will be ok!

 

[LOSTnut]

Well, I actually don't have what you have. My fistula is about 2 inches away from the stoma and does not interfere with the bag. So, I am sorry that Misty was under the impression that I would have more advice to offer.
I hope they will be able to help you in the hospital without having to go through a surgery with reconstruction of the stoma.
Good luck and let us know what the decision will be.

 

[littlefreebird]

i'm hoping its not a fistula as from what i read the fistula is caused by active disease and i have been healthier than ever. also, i don't know what i fistula would look like.
i'll describe what it looks like: i had a granuloma where the stoma meets the skin burnt off 6 months ago, it didn't really go away, shrivelled slightly just. this is where the leak is coming from in between the lump which is about 1/4 the size of a pea and the stoma. the skin is obviosuly a little broken around the area so its hard to actually see any kind of hole or opening where the output is coming from and i think its a good sign that the majority of output is still coming out the top.
i had to sit and stare at the stoma for 30mins to make sure the output was coming from the side as i thought i was going mad.
the bag cut to a bigger size is working a treat so far but i'm still gonna take a few days off work to monitor everything and make phonecalls to try and be seen this week.

i've been thinking the worst- i.e. surgery to change the stoma site, but the skin is still healthy enough and i'm so happy with its current position- i'm hoping he might suggest antibiotics or cream or something.

thanks all!

 

[Terriernut]

This must be very frightening for you. And everything was going so well! It is a good idea to get it seen to immediately by the 'specialists'. I hope it's not as serious as you think! Please keep us posted!
:kiss::hug:

 

[Kris]

So Sorry!! Keep us posted on what it is. I wouldn't think the disease is active, because you are feeling fine and have no other symptoms.

 

[bigtruck]

Sorry your getting this hassle now especially when you've been doing so good but try not to worry I'm sure it's just a minor hiccup, hope they get you sorted soon.

 

[LOSTnut]

I hope you'll get an answer soon and keep my fingers crossed for you that it will be treatable with antibiotics or, for that matter, anythingthat is not invasive. :rosette1:

 

[xX_LittleMissValentine_Xx]

Hope you get things sorted and feel better soon x

 

[littlefreebird]

i phoned my surgeons secretary, she's booked me in to see him for 3 weeks time!!!
i told her the dr's at a&e said it was urgent- she said it says in my a&e notes i was 'unwilling to stay in hospital' LIES!! i was anxious aboiut being sent home- i had a sneaky read of my notes when i was there and it said 'patient anxious about how she will manage stoma at home'.
she then said 'well he's booked up until then', i still wasn't happy so she then said, 'well he won't actually be here, he's on leave'.

i cannot believe there is no alternative! they expect me to wait 3 weeks, my skin is stinging constantly i have had a couple of leaks so i can't go to work and i am constantly paranoid i smell like output (cause i do!) i am worried about leaving a fistula (if it is one) so long!

the whole reason i had the panproctocolectomy was because i was left waiting for so long- and nearly died because of it!

i phoned my stoma nurse and she's going to take a look at it tomorrow, i think i'll be upset when i see her- hopefully it gets me in!

i'm so worried about this- i can't find anything about what i have online.

 

[Kris]

How frustrating. Keep pushing to get your way!

 

[Terriernut]

This is typical I'm afraid! But at least if you see the stoma nurse, you can be confident she'll get things moving for you.
:kiss:

 

[LOSTnut]

Wow--I never can believe these horror stories of just getting an appointment. I mean, seriously, which doctor doesn't leave room for emergencies??? Sorry about your plight, hopefully the nurse will be helpful in easing your anxiousness.

 

[littlefreebird]

well i'm just back from my appointment with stoma nurse she was lovely but she did tell me off for leaving my bag on for 7/8days- she said it should be changed everyday or every other day so that i can care for my skin- which is now really broken down.
she then was horrified that i have been sizing bags at 25mm- she said it is far too small and when i told her i just shove it on she told me off lol.
my new size is 30mm.

she said, "don't be mad, but could you have been imagining the output coming from the side?" she 100% didn't see a hole or anything there....she left the room to go and get paste and a gush of output came from the base- i told her when she returned but shes not convinced... to keep me happy she said IF i am confident the output is coming from where the granuloma is, i may just have the tiniest puncture, where the stitches came away in that area and cause i've been wearing bags too tight i have further damaged the area and now i'm starting to get output coming from there.

shes given me 'orabase' paste by convatec and she said if it is a puncture this paste will heal it.

also- she said if it was a fistula i would be very sick, as sick as i was last time i developed my fistula and as she'd poked at it so much she said i would have been in severe pain, i didn't feel a thing.
feel a lot happier- she definatley thinks i'm a drama queen, she honestly doesn't believe me- i can't see exactly where the output is coming from either but i have seen it shoot out from there in spurts!

will just have to wait.....anyone heard of the punctures from stitches coming loose?

 

[glum chump]

Hey LFB

I'm glad the nurse read you the riot act and is getting you all sorted out! Yay! Who says size doesn't matter----you poor thing! I'm so happy that you're back on track and sounding a lot more relieved about it all.

Thank goodness you were a bit of a drama queen---panic can work wonders sometimes!

I don't have the answer to your question, but I'm sure someone else will...

Kismet

 

[Misty-Eyed]

My goodness.. how do you get a 25mm bag on a 30mm stoma? Mine is 28 and there's no way I could get a 25mm on it.

Glad it's making you feel better though. But here.. I KNEW I'd read that someone had the same thing. Took me ages to find the thread. http://www.crohnsforum.com/showthread.php?t=27484

Thought it was odd that just having a bag too tight would do it.. but I have no idea. Let's hope you see an improvement!

 

[littlefreebird]

thankyou very much misty for that link- that is exactly what's happening....i never thought the bags were too tight, my stoma is slightly narrower at the base so when i cut my bags they seem to fit at the base but i have to squeeze the stoma into it first lol oops!!!

sometimes when i'm changing the bag, the stoma is contracting- it appears much narrower than when its relaxed.

i just panicked on saturday when i saw it, i thought i had a rupture or fistula and was then worried about toxic shock and all sorts!!

now i can breathe and wait to heal up....thanks everyone for calming me down- i'm not usually O.T.T like that, i think i've just been enjoying remission so much that i thought it was all over, was a very scary thought.

 

[xX_LittleMissValentine_Xx]

Glad you are all sorted out Hope it heals up nicely.

 

[Terriernut]

Thank goodness for stoma nurses, even if they do give out a bollocking occasionaly! *usually deserved, I've been given a couple* :facepalm:

Get better soon!!!

 

[PsychoJane]

Well I am glad the stoma nurse thinks it is not a fistula.

If ever you have question about peristomial fistula, I'm about to be a master of these things.... I unfortunately have a lot of them going at the moment...

What your stoma nurse said is true about feeling sick. I do feel sick when they break out but not so much once they actually reaches at the surface of the skin Like... I am mostly tired and I have hard time eating not because of the digestion but because when they reach the end of the ileum, the food pressures the fistula and that is when it hurts. Otherwise it does not hurt soooo much. It does hurt mad times (like I have hard time wearing clothes because of the pressure) before they break open but the hole can be very very tiny and they can seem like they are granuloma. Id say mine are about the size of a pencil eraser for the biggest and some slightly smaller. The pain feels like hmmm if someone was burning you through the skin as that is pretty much what happens... For what it is of the output, there is pretty much no output coming out from mines, mostly mucus, puss or something like that and sometimes blood. Anyway, if you have further questions or concerns until you have your doctor confirmation, feel free to ask. Oh and don't worry about having a fistula untreated for 3 weeks. I've had mine on rotation for about 2 years now... If you start having pain and notice that the skin around gets hard and hot, try get a prescription for cipro-flagyl until further investigation is done. This is what they gave me everytime it happens...

I for sure hope that the nurse is right and good luck with the healing!

 

[littlefreebird]

i feel a build up of pressure for a split second before output comes out of the side but its a funny feeing rather than uncomfortable.

i've never had any pain there and i can press hard on the area without feeling any pain.

are they just leaving your fistula's or what is the plan for you?

 

[nevilletanner]

hi,

not really relivant but thought i would say the following.

i also have worry all the time about a abscess forming as this is what put me into hospital a few weeks back, i talked to me consultant about this and he said "pain on its own, then painkillers" "temperature on its own, then its a bug" " both together - you come and see me straight away".

monitor your temp .. its the best indicator of infection by far, just might keep your thoughts of dread at bay.

good luck.

 

[PsychoJane]

After two years of attempts to get the disease under control (antibiotics, anti-tnf). And since the disease is really located only in the terminal ileum we decided it was now the time to reconduct the ostomy. Hopefully the surgeon will be able to just leave the ostomy where it is now... but since they have hoped something would work properly for too long... it is a possibility, with all the fistula that I have at the moment, that he will need to move it around to another site which I hope won't be the case...

 

[hopeful]

If part of the stoma (like the bottom) is flush with the skin or recessed, it can give the impression of output coming from two sites. I had that too, and it frightened me...

Your skin should be in good shape. I dealt with a granuloma too, and eventually got it sorted. I now use Convatec's Combihesive base which molds itself to the stoma's shape, so no skin is left exposed and no need to use the creams. I do use a Salts seal or an Eakin ring before putting that on. But I do need to change every 3 - 4 days.

 

[LOSTnut]

Glad to hear that things weren't as bad as you thought and you might be able to heal it on your own.
Hope it will heal quickly!

Loved the remark "size matters!"

 

[littlefreebird]

If part of the stoma (like the bottom) is flush with the skin or recessed, it can give the impression of output coming from two sites. I had that too, and it frightened me...

yeah this is what the stoma nurse was saying and i've had that too but i sat and stared at izzy whilst i was in a&e for 7 hours and output was definatley shooting out the base- in squirts/spurts. i was trying to explain this to the stoma nurse but she didn't believe me, izzy even done it when she left the room!

everytime it happened in a&e i would say to my boyfriend, 'mark u did see that didn't you' just so that i knew i wasn't the only one that could see it.

my stoma is quite long compared to some that i have seen i think its aprox. 2 inches so i was able to hold the top tightly with a tissue and make sure it was coming from the side.

did your granuloma go away by itself? they did put silver nitrate on mine and just made it slightly smaller.

 

[hopeful]

I guess you should set up a video cam and then show it to the stoma nurse.

With the granuloma, I used silver nitrate sticks every few days, but it did not resolve it (I used them on my own). I ended up figuring out a different solution.

I applied Pririnase nasal spray (fluticasone - a cortisone) to the area, thena pplied the stoma powder, and then wiped it over with a protective wipe. So I was locking in a layer of steroid. About three of these treatments and it healed completely.

 

[Terriernut]

That video idea is very good, and then emailing it to the stoma nurse. Then see what she has to think about it. (these iphones arent a bad thing after all)

 

[Neko76]

Just read this thread and just wanted to say that you know your body best and if you're sure that the output is comming from the bottom....it probably is, and eventhough most Dr.'s and Nurses are well meaning and knowlageable, at the end of the day if they screw up or are wrong you're the one who ends up having to live with the consequenses. Basically I just wanted to say keep pushing until YOU are satisfied with the end opinion/diagnosis. Oh and you (along with the rest of us ostomates) have every right to be a drama queen.....we've been through a lot and don't need any more anxiety or stress.

I hope it is just a small issue that will resolve quickly so you can get to your new job.

All the best,

Kat

P.S. :goodluck: with the new job (when you can finally get there!!!)

 

[littlefreebird]

thanks everyone..

i saw my surgeon today, he believed me- he said 'it can happen'.
due to where it is he is ensure of what it is exactly. when he looked at it, he said it looked 'quite like a fistula'. i then said what the stoma nurse had told me about surely if it was a fistula would i not be quite sick and the area be very sore, he said not necassarily.

he's booking me in for a small bowel series to see if there is any active crohn's i.e. any narrowing etc....if there is then i have a fistula.

if all is well then it must just be some kind of tear.

he seemed to think if the stitches were not done right i would have noticed problems a while ago- but since output only comes out of the side sometimes i'm thinking there may be a chance i just have not noticed til now.

i'm still med free- if i have a fistula i'll be trying meds to close it, if that doesn't work i'll just need stoma revision (not resite).

he basically said the oposite to what the stoma nurse told me.

he told me on my way out to think positive....i just hope i don't have crohn's in the small intestine- i have never had it there in my whole 10 years of having crohn's. fingers and everything else crossed in the meantime- i'm happy enough that i'm symptomless and the bags are staying on.

 

[littlefreebird]

....he also said that because there's not inflammation around it- that it's a good sign, he told me if i notice any to phone his secretary as soon as i can.

he was very nice....he did hint that i'd put on a bit too much weight though lol!!!

 

[Terriernut]

Oh please I am hoping it's not active disease elsewhere for you! Did they take your bloods to check for inflammation, etc??

My CD has so far always been in the colon, and not elsewhere either, I'm hoping for you that yours stays that way!!

:rosette2:
Hugssssssssssssssss! (you are gorgeous, you deserve a break!, lovely lady!)

 

[Terriernut]

....he also said that because there's not inflammation around it- that it's a good sign, he told me if i notice any to phone his secretary as soon as i can.

he was very nice....he did hint that i'd put on a bit too much weight though lol!!!

Ooops up side the head for that boy!!! :mad2: Too much weight...humph!

I'm voting for a stitches prob in the past.

 

[Misty-Eyed]

Yeah my GI told me that if you only have crohn's in your colon for a long time, it's unlikely to spread to the small intestine. Really hope it hasn't but keep us updated!!