11-20-2018, 04:09 PM   #1
MissEire
 
Join Date: Jun 2018
Is bleeding normal?

Hello, me yet again. Quick question.


Is bleeding normal with a fistula?


Long story short - abscess surgery in April, wound wouldn't close, turns out I have a complex fistula connected to the opening in my skin from the abscess site.



I had a colonoscopy which ruled out Crohn's, but I'm awaiting the biopsy results (they're currently lost, yay for Irish health "care.").


I'm also on a 6 month waiting list just to see a colorectal surgeon for a consultation so asking my surgeon isn't even an option.



Anyways. Lately I've been bleeding from the site a lot. Anytime I have a bowel movement or pass wind, I bleed quite heavily for a minute or two - enough to bleed through my dressing each time I pass wind! It happens occasionally when I urinate too. I've had the odd bout of rectal bleeding too.



Is that kind of bleeding normal with a fistula? It's still draining but the dressings tend to be filled more with blood than exudate tbh
11-20-2018, 11:39 PM   #2
Trysha
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Any kind of bleeding is best reported to your doctors as soon as possible.
You should be under some supervision by a Gastroenterologist and by the doctor who did your surgery.
Bloodwork should be done to keep a check on general levels such as hemoglobin which will likely drop with the constant blood loss.
Donít forget...the squeaky door gets the oil....donít be afraid to take a stand and push for an earlier appointment with the surgeon.
Usually when a patient is bleeding they push things forward....and you really should be seen
very soon.
Feel better soon
Hugs Trysha
11-21-2018, 02:08 AM   #3
MissEire
 
Join Date: Jun 2018
Any kind of bleeding is best reported to your doctors as soon as possible.
You should be under some supervision by a Gastroenterologist and by the doctor who did your surgery.
Bloodwork should be done to keep a check on general levels such as hemoglobin which will likely drop with the constant blood loss.
Donít forget...the squeaky door gets the oil....donít be afraid to take a stand and push for an earlier appointment with the surgeon.
Usually when a patient is bleeding they push things forward....and you really should be seen
very soon.
Feel better soon
Hugs Trysha
Thank you!

I'm not under any care at the moment. I just see a nurse once a week for wound inspection. She doesn't know much about fistulas so hasn't said anything really about the bleeding.


It's a 14 month wait for a GI doctor lol, and I haven't even been referred to one.


I'll ask my PCP to refer me for bloods. I already have a b12 deficiency and I'm a little worried about anaemia given I've had daily blood loss since April.


Thanks again. I had been fighting and fighting to get treatment (you have to fight for it in Ireland!), but I've probably gotten a bit complacent lately.

Back to my PCP I go!
11-22-2018, 08:57 PM   #4
Cdaisydo
 
Join Date: Oct 2018
I feel for you so much! Youíre having an absolute nightmare with these waiting lists! Honestly.. what state do you have to be in to get anything done! Youíre suffering enough!

Anyway.. I hope your doing ok considering.

Sending my love
11-26-2018, 05:27 AM   #5
MissEire
 
Join Date: Jun 2018
Thanks Cdaisydo I'm fine, just tired which I assume is from the bleeding lol.


No further update except the bleeding is worse. I needed to pee during the night, and wound up covered in blood needing to shower because it was everywhere.


No biopsy results, they're lost.


So I've been calling and emailing every doctor I dealt with, no responses.

I'm going to my GP next week when I have some time off, to demand answers.
11-26-2018, 09:10 AM   #6
Cdaisydo
 
Join Date: Oct 2018
Thatís terrible!

Can you phone them?

Iím currently in the dark too, itís frustrating. I just wish I could help you itís such an awful feeling not knowing!

You shouldnít be bleeding that much!
11-29-2018, 12:51 PM   #7
MissEire
 
Join Date: Jun 2018
I had been calling and emailing two hospitals and my GP. after counting, I made 17 attempts at contact lol.


I FINALLY got a reply to say that they've found my results and are sending them to my GP so I'll have my results on Monday. I have to go see my GP anyway for a blood test referral so hopefully I'll also be told they're all clear.


If they are though, I gotta figure out what's going on because I've had rectal bleeding on top of the fistula site bleeding.

It never ends lol
11-29-2018, 05:02 PM   #8
Cdaisydo
 
Join Date: Oct 2018
Thatís a relief though! Youíll finally find some information out!

It never bloody ends!
12-19-2018, 04:51 AM   #9
MissEire
 
Join Date: Jun 2018
The nurse thinks the wound is infected as it's still draining loads of blood, the exudate is too thick and an off colour and it's hurting me a lot deep inside.


So I've to send swabs of the exudate to my doctor and get antibiotics.

The nurse said it'll be fine til after Christmas so drink and enjoy Christmas before starting the meds LOL!
01-08-2019, 08:10 AM   #10
MissEire
 
Join Date: Jun 2018
Just an update if anyone cares!


Antibiotics didn't clear up whatever is causing the bleeding, or the pain. Still bleeding quite a bit.


However, my surgeon had a cancellation so I'm being seen for my first consultation in two weeks I'll finally get some answers!
01-08-2019, 07:08 PM   #11
DCCrohns
 
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Best of luck!
__________________
________________

Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, Humira
Current Meds: Stelara (4 weeks) , Azathioprine (150mg/day)

Surgeries: Fistulotomies & Seton Placements (2011, 2013); Advancement Flap (2013); Temp Loop Ileostomy (2016); Fistula Repair w/ Gracilis Muscle (2016); Fistula Repair (2016); Seton Placement & Stem Cell Harvesting & Stem Cell Placement (2018)
01-08-2019, 10:42 PM   #12
Trysha
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Still two weeks to wait and you have been bleeding all this time.
How about you write to the Minister for Health and give a detailed account of all the neglect and delays in health care.
This appears to amount to negligence on the part of the health system.
Feel better soon
Hugs
Trysha
01-09-2019, 01:40 AM   #13
MissEire
 
Join Date: Jun 2018
Still two weeks to wait and you have been bleeding all this time.
How about you write to the Minister for Health and give a detailed account of all the neglect and delays in health care.
This appears to amount to negligence on the part of the health system.
Feel better soon
Hugs
Trysha
I've been bleeding since last April lol. I'm used to it now! I've considered writing to the minister but according to my nurse, it's just how it is. One of her clients had essentially the same problems as me and was left for two years without a surgical consult so apparently I'm being seen a lot faster!


My plan for my consultation is to basically lie and say I'm waiting to get better so I can start a family. I'll be 30 in a few months,so they might be worried about my fertility declining especially as I have PCOS. They don't need to know I don't want kids!
01-22-2019, 11:13 AM   #14
MissEire
 
Join Date: Jun 2018
Me again!


Saw the consultant today, finally.

Things are moving quickly now because of my age and gender!


I'll be in for exploratory surgery within 6 weeks, and they'll decide during that if I can have setons or need a fistulectomy. He said the risk of incontinence is very low because even though I have multiple tracts, it only goes around the outer part of my sphincter, not the inner parts.


During the exploratory surgery, they'll do whichever procedure is necessary. Hopefully it'll all be over soon.
01-22-2019, 02:12 PM   #15
Fistulathens
 
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Good news Miss Eire. Keep us posted.
01-29-2019, 07:05 AM   #16
MissEire
 
Join Date: Jun 2018
Update.


They may not give me the surgery.


I've lost 80lbs through strict healthy dieting. Apparently that's not enough. They've now told me I have 4 weeks to lose 12lbs or I'll be waiting over a year for surgery.


12lbs in four weeks isn't healthy or even remotely possible tbh so I'm not sure what happens next.
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