Bleeding from my EC fistula

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CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 2/17/2010 6:16 PM (GMT -7)   
I am really upset guys. Last night while I was on the computer I had the bandage off my fistula because sometimes it burns and aches when it's covered. Well it was leaking as usual so I always keep gauze around to catch the flow. At times I press around the site as to loosen up the fluid and get it out. Well last night I was doing that and all of a sudden sploosh a certain area around the site I never really pressed before. I pressed on it with pressure. After all this fluid started to flow out I noticed it was pink and then it was red blood. I soaked quite a few large gauze pads. I am just wondering if anyone else has experienced this. Again mine is located on my abdomen so not everyone can relate. Please let me know if you think this is normal or should I go to the ER? I was also wondering if anyone deals with lower back pain from the fistulas? Because I have been experiencing that as well. I am nervous, I am hoping this fistula isn't starting an abscess by the spine and by my side where the opening is. Please Help!!!confused  What do you guys think this is???
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
I'm waiting to get cleared to start Remicade treatments. I have to be infection free.


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 2/17/2010 8:16 PM (GMT -7)   
I've never had a fistula so I can't speak to that but if you're still bleeding a considerable amount then that alone would indicate (to me anyway) that a trip to the ER is warranted.

Hopefully someone with more experience will come along soon to give better info. Good luck and I hope you get it under control soon.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 2/18/2010 4:04 AM (GMT -7)   
sounds like what mine did for 4 years... every once in a while, it would bleed.. minre was dead center on my incision line. used to wear a abdominal binder and ABD pads. and even ostomy bags.. is your skin breaking down around the hole? mthat would be from the digestive enzymes not being de- enzymized (if thats a word) by the intestinal bacteria and such. if my website was fixed you could see pictures but i havent got to it yet. i finaly had to have it surgically fixed. which i will bet , you will also. it just wont heal if you have that much drainage. and fibrin glue wont work either cause its too wet. etc... i really feel for you, it was the MOST terrible thing about my 26 years so far. well ok my jujenostomy was worse but it was only for 3-4 months. and s for the remicade, with your type of fistula, i would even try it . been there done that. especially with your history of abcesses. it can kill ya quick and there is hardly no way to stop a sepsis infection once it takes hold. you can be dead in 1-3 days.. been there and done that as well.. 3 times. well died once, came close 2 others.
randynoguts 



     http://www.geocities.com/randynogutsweb/


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 2/18/2010 7:03 AM (GMT -7)   
Hi, my EC fistula is about an inch under my belly button in my incision scar, sometimes its bleeds more pink tinges than pure blood. I was told that should it start bleeding alot to go to hospital I think that would be the best thing for you to do. Please let us know how you get on Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp stoma Postponed till ???????
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/18/2010 7:25 AM (GMT -7)   
Please let us know how you are doing? Did you end up going to the ER? Gentle Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 2/18/2010 7:55 AM (GMT -7)   
Hey there. I have an EC fistula is almost the same area as you. On the right side, right beneath my hip bone. Anyway, I've had times where the hole will sort of abscess and get really painful (burning etc..) and then will drain blood for a little bit. It's not gushing blood, but it will drain enough to need a few gauze pads. I also have terrible low back pain with mine too. Let us know how you are doing and if you went to the E.R. Also, are you on your period by chance? That's when mine always happens it seems.
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort, and Imuran trying to get the drainage to stop. 
 


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 2/18/2010 8:45 AM (GMT -7)   
Hi guys. I have not gone to the ER yet. I figured I would wait and see what happens . I have heard many say they have at one time or another bled from there EC fistula site. Mine does all kinds of strange things it has oozed blood, also a pinkish colored fluid (that I'm assuming is blood and fluid mixed) and then yellow and then brown with specs, then green with specs, then at times sesame seeds and poppy seeds will come out of there too.  This question is IMPORTANT: Has anyone ever applied pressure around the site to promote drainage? Because when I did that the other night that is when large amounts of pink fluid popped out and after all the pink fluid was done blood followed. I feel like I loosened up a pocket of infection or an abscess that was stuck under that part of the skin. Does that sound normal? Since doing that it just leaks its normal fluid, unless I apply pressure to that part of the skin around the site (the area I'm talking about is to the right of the site when I look down at it.) Aronk you probably understand what I'm saying.  Please give any helpful info you may have and if I go to the ER I will have my laptop so I will give you guys the play by play.
 
Aronk: I haven't had a period in 6 months.
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
I'm waiting to get cleared to start Remicade treatments. I have to be infection free.


aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 2/19/2010 7:29 AM (GMT -7)   
I do know what you mean.  I think sometimes the "debris" gets clogged up and with the pressure you are applying it's pushing it out.  I had trouble with intra-abdominal abscesses before the fistula tract.  The biliary contents or whatever it is was still pooling up in the abscess cavity (even though abscess had been properly drained) and then when I apply a certain amount of pressure around the area--it would sort of gush out like you are explaining.  Please let us know if you do go to the ER and what they say.  Good luck to you.  I'm on like day 9 now of no drainage and no pain.  I'm currently weaning off the Entocort and just stopped the Flagyl yesterday.  I will remain on 100mg of Imuran and see what happens.   I've had this fistula since August 09, so I'm ready for it too be gone.
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort, and Imuran trying to get the drainage to stop. 
 


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 2/21/2010 5:35 PM (GMT -7)   
Aronk, you and I are in the same situation. I too had problems with abscesses before the fistula tract. I had some fistulization going on from bowel to bowel but that didn't have any syptoms at all. I only know about it because my Dr told me. I am so relieved to hear that you also experience the pressure and then the debris leaking. I thought I was alone. I too am on Imuran 100mg and Flaygl. I think I am going to steer away from the Remicade. I have heard too many horror stories about that drug, now I'm afraid. I'd rather be on humiara. (sp error?) 9 DAYS AND NO DRAINAGE????? That is awesome! Has it ever gone this long before? What are your doctors saying you should do about this fistula? What treatment are they giving? Just the Flaygl? The drainage in mine is a bit less but not by much. I've only had this fistula since Dec 20th so I guess I have to get used to having it around for a while huh?
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
I'm waiting to get cleared to start Remicade treatments. I have to be infection free.


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 2/27/2010 10:41 PM (GMT -7)   
I know I'm posting a bit late, but I'd like to share that I too have bouts of bleeding from my EC fistula. It's quite common actually, moreso when I have a more active day than usual. I get food coming out of my drainage site as well - random leafs of cilantro, green pepper, corn, all sorts of gross stuff that didn't seem so gross when I ate it. :o) I've had an EC fistula in my lower abdomen since July 09 and have also had several not so great complications because of medicine / infections - sepsis, methotrexate-induced neutropenic fever and also methotrexate-induced fistula formation...fistula number 2....one's colocutaneous, the other is enterocutaneous. bleh.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 2/28/2010 4:46 PM (GMT -7)   
smallgit, beter late than never, always good to see more opinions..
randynoguts 



     http://www.geocities.com/randynogutsweb/


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 2/28/2010 11:23 PM (GMT -7)   
Smallgit Welcome! I'll start the welcoming process with a question: How large is your EC fistula opening? Mine is the size of a pencil circumference and now I have a tiny new hole next to that. I too drain cilantro, oregano, etc. It's like a suprise everytime I take my bandage off.

Randy I am going to get an abdominal binder, where did you get yours? I have a Doctor appt tomorrow so I am going to ask him to write a script for one. Hopefully thats possible.

How does everyone know how many mls they are leaking? How does one measure?
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
 


Redscooter
New Member


Date Joined Dec 2013
Total Posts : 7
   Posted 12/18/2013 7:28 AM (GMT -7)   
Is this page still active? I have a fistula & it bleeds? Anyone out there can answer some questions I have?
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