Is bleeding normal?

[MissEire]

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

 

[Trysha]

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.
Don’t forget...the squeaky door gets the oil....don’t 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

 

[MissEire]

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.
Don’t forget...the squeaky door gets the oil....don’t 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!

 

[Cdaisydo]

I feel for you so much! You’re having an absolute nightmare with these waiting lists! Honestly.. what state do you have to be in to get anything done! You’re suffering enough!

Anyway.. I hope your doing ok considering.

Sending my love

 

[MissEire]

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.

 

[Cdaisydo]

That’s terrible!

Can you phone them?

I’m currently in the dark too, it’s frustrating. I just wish I could help you it’s such an awful feeling not knowing!

You shouldn’t be bleeding that much!

 

[MissEire]

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

 

[Cdaisydo]

That’s a relief though! You’ll finally find some information out!

It never bloody ends!

 

[MissEire]

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!

 

[MissEire]

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!

 

[DCCrohns]

Best of luck!

 

[Trysha]

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

 

[MissEire]

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!

 

[MissEire]

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.

 

[Fistulathens]

Good news Miss Eire. Keep us posted.

 

[MissEire]

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.

 

[MissEire]

So i have an update.


Back in January, they asked me to lose another 12lbs very quickly to get surgery in a smaller hospital.

I did it - my losses stand at over 100lbs now and I'm nearly at a healthy BMI.



But I've still been waiting because of medical staff striking!


I'm having exploratory surgery next week where they'll either place setons or do a fistulectomy.


I've had no medical care since January. No nurse visits, no hospital consultation, nothing. I had bloods done jn January and have yet to receive results.



Safe to say I'm very dissatisfied with the health services in Ireland lol

 

[curlywurly]

I feel for you I did not realise the care in Ireland was so bad you must be exhausted with the bleeding to be messed about like you have been is a disgrace.
I truly hope you can sort it out or see if you can transfer your case to a health care in England.
Sending hugs your way.

 

[exit4]

Hope you find answers soon! I have had many and still have a fistula with a seton today - that's almost 5 years...The only time I had bleeding is right after abscess draining and one day after seton placement. As far as your wait time for a procedure/appointment - that is crazy! That is the cost of socialized medicine I guess... I have a health insurance from my wife's work( I am in US). Same day tests - MRI/scans - always an opening at a dozen test facility's in my area. Next day surgical procedures here and my GI doc sees me with in 48 hrs with out any pain, If I feel pain - the next day!

 

[MissEire]

I feel for you I did not realise the care in Ireland was so bad you must be exhausted with the bleeding to be messed about like you have been is a disgrace.
I truly hope you can sort it out or see if you can transfer your case to a health care in England.
Sending hugs your way.

I've actually looked into having my treatment in the UK but unfortunately it's not possible. I could do it and my own health service would reimburse all costs, but I'd need 20 thousand upfront to cover it all and my savings are only a couple of thousand lol.


Thank you for your reply! I'm definitely exhausted all of the time, which i assume is from the bleeding, but at least I'm finally being seen soon

 

[MissEire]

Hope you find answers soon! I have had many and still have a fistula with a seton today - that's almost 5 years...The only time I had bleeding is right after abscess draining and one day after seton placement. As far as your wait time for a procedure/appointment - that is crazy! That is the cost of socialized medicine I guess... I have a health insurance from my wife's work( I am in US). Same day tests - MRI/scans - always an opening at a dozen test facility's in my area. Next day surgical procedures here and my GI doc sees me with in 48 hrs with out any pain, If I feel pain - the next day!

Five years?! Wow! Does that mean you're stuck with a draining wound all that time? That's an absolute nightmare scenario for me to imagine, I'm struggling massively with constant dressings and sanitary pads and it's only been a year and a few months!

I don't even have a GI doc lol, they decided i don't need one despite awful BMs, blood, mucus, etc.

 

[exit4]

My seton is in place now to prevent fistula re infection - outside opening closing while inside is not and that creates infection/abscess. I do not have pain or draining any more, just small discharge( I tape a small cotton gauze over) if I have a runny bowel movements. I run, swim and ride motorcycle without any issues.

 

[MissEire]

Had surgery this morning, draining Seton placed.


Unfortunately the fistula runs through literally all of my muscle so a cutting Seton or fistulotomy aren't options. So I'm being booked in for a LIFT procedure in October. I know nothing about this procedure so I'm gonna Google it but yikes, it's never ending.

 

[exit4]

I had the LIFT procedure (close the current internal opening and create a new opening outside all the muscle) - 30 min under anesthesia - it did not work for me -fistula re opened at the old spot. Check this video on new treatment research at Mayo clinic: http://medprofvideos.mayoclinic.org...lication-for-stem-cells-crohn-s-complications

 

[MissEire]

I had the LIFT procedure (close the current internal opening and create a new opening outside all the muscle) - 30 min under anesthesia - it did not work for me -fistula re opened at the old spot. Check this video on new treatment research at Mayo clinic: http://medprofvideos.mayoclinic.org...lication-for-stem-cells-crohn-s-complications

Thank you for this. Unfortunately, this isn't an option in the country i live in, and isn't even being considered for trial here as far as I'm aware.

I'm very sorry the LIFT procedure didn't work. I'm desperately hoping it will for me.