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02-02-2014, 08:04 AM   #1
Jenny92
 
Join Date: May 2012
Location: Surrey, United Kingdom
Abscesses and fistuals

hii, ive suffered with abscesses and fistuals for over year now and have two setons i was hoping to ask some advice and see how everyone else copes with it.
Medicine wise i am on methotreaxte and antibiotics (flagyl and cipro) and also streiods as i just had a flare. I have tried Humira and infliximab both of which stopped working and i am currently on a drug trial for ustkinemba but i dont think i am actually getting it. My doctors dont seem to suggest anything and say there isnt any other medicines i can try. They suggest i have an illostomy bag which i really dont want and i dont feel it will help. Im just looking for some advice i will literally try anything. For me it feels like my abscessess just get ignored i take antibiotics when they get sore and until then no one seems to do anything. How does every one else cope with it. Also i find it causes relationship problems. I have just come out uni i find it hard to get a job with constant time off and worried i will end up losing my bf. He is understanding and we have been together for a while now, but it is hard cause its not like we can go out for meals all the time nor are we as intermiate and it takes its toll. Also i worry in the futre i might end up wth an illiostomy and i dont no how he will react. I no this shouldnt be my thought and he says we will take it as it comes and see what happens. But that doesnt leave me to reassured.
I feel there must be some medicines out there i havent tired yet. Has anyone had any luck getting rid of there abscesses or fistuals?
02-02-2014, 09:12 AM   #2
nicola30
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Join Date: Feb 2013
Location: manchester/england

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hi jenny92,

i just wanna say i no wot ur goin through.. i have lost count of how many abscesses i get ihave been off antibiotics for a week now which is the longest i have been off them i was gettin an abscess or 2 at least once a week horrible things.. finally got the results of my mri scan last week which shows fistulas but there draining nicely no mention about setons tho im startin back on infliximab tuesday so i think there hopin it helps to heal the fistulas... im also on azathioprine. im sorry i cant tell u how to get rid but for the past 6 months or so this has been goin on for me and fingers crossed it seems like i could b comin to an end or at least a break.. chin up hun xx
02-02-2014, 01:38 PM   #3
Missbudd6
 
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Join Date: Feb 2014
Location: Hampshire, United Kingdom

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Hi Jenny , i am new to this so excuse me. I have had abbesses and fistulas for 3 years now. I have two seton drains in and have them re done every 3 months through surgery. I have spent three years researching a way to get rid of them, i have tried lots of things and they are still there. I have good days and bad days with them but i know it sounds silly i have found that accepting that they are there and are going to be a part of me helps. It also lowers my stress levels. I know its easier said that done but it does help. I know just how you feel on the boyfriend front to, i've been with my partner for four years and i got diagnosed in our first year of being together. He has said the same to me "we will think about it when it happens" but like you said it gives you no reassurance etc. One thing i have learned is and i don't mean to be harsh but if he was to leave or you were to lose him then he's not worth your time/heart in the first place. So try not to stress about it and keep your chin up xx
02-05-2014, 10:29 PM   #4
dgg
 
Join Date: Feb 2011

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Hi. Just wanted to share my experience since I have been suffering from fistulas for 6 years and tried just about everything... setons, incision & drainage at least 15 times, Remicade, Imuran, antibiotics. NOTHING seemed to help and I felt like my fistula was running (and ruining!) my life. I had a very complex high up fistula (called a horseshoe fistula) so I had a primary opening that went down to both sides of my buttocks (so I had 3 different setons in). I was in pretty constant pain most of the time. The first time a doctor suggested an ileostomy I cried... I imagined the worst and didn't want to think about it.

Well, life went on with me feeling sick over and over and pretty constant discomfort from my fistulas. I was having a hard time holding my job and taking care of my young children. I decided I had to try something else and finally decided to get an ileostomy. I had the surgery about 6 months ago and my life is SOOOO much better. It wasn't easy at first, getting used to it and feeling self conscious as a woman, but now I am so used to it and am just happy to not be in pain. I will say that with the ileostomy alone my fistula still drained but the drainage was much less and the pain was also much less. 3 months after the ileostomy surgery I had a second planned procedure for an advancement flap. About 8 weeks after that procedure I noticed that my drainage stopped. It was like a dream for me, being able to wear underwear without a pad that I had to change throughout the day.

My ileostomy is a loop ileostomy and the hope is that it can be reversed (probably waiting a year after getting my ileostomy to discuss reversal) but I am so happy that I might not want to try it. Just wanted to share my thoughts since I was also petrified about getting an ileostomy but find that compared to my fistulas my current quality of like is so much better. I am married and have found ways to not let things get in the way and my husband doesn't seem to mind at all. Nobody can tell that I have an ileostomy (one of my original concerns) and I can wear a lot of my cloths (just not some really fitted tops). Good luck to you and happy to answer any questions.
02-06-2014, 11:59 AM   #5
DCCrohns
 
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Join Date: Jul 2011

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@DGG: Thanks for sharing. I'm in a similar boat and have tried many meds and have a fistula that has not responded to several different procedures. I had advancement flap surgery in December but my CRS and plastic surgeon (they teamed up) advised against the ileostomy for the first go.

Sadly, my fistula is back (but smaller) and I'm back on Humira. The hope is that we can try surgery again in a few months once things calm down. If that doesn't work, ileostomy is on the table. I'm hoping we don't have to go that route but encouraging to hear that it worked for you!
__________________
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Diagnosed with Multiple Fistulas: 2000
Diagnosed with Crohn's: 2002
Past Meds: Pentasa, Remicade, Cimzia, Asacol, Cipro, Flagyl, Lialda, VSL#3
Current Meds: Humira (80mg weekly)
Surgeries: Gall Bladder Removal (1997); Fistulotomies & Seton Placements/Adjustments (September 2011, January 2013 & August 2013); Advancement Flap (December 2013); Temporary Loop Ileostomy (July 2016); Fistula Repair with Gracilis Muscle (September 2016); Fistula Repair (December 2016)
02-09-2014, 12:15 PM   #6
pink&green
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Hi Jenny, my hubby has had fistulas since 2005. He has had them drained(4X) surgical removed(3X). He is currently on Remicade(4 yrs now) and tried Humira(reaction) and neither hasn't helped with the fistulas. He has been dealing with this recent fistula since September 2013. He has an appointment with his CRS in March will have to have them removed again. He is in so much pain he takes lots of sitz bath, anti-inflammatory & antibiotics nothing seems to work.

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