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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » A few questions......who can help me?



09-05-2012, 01:52 PM   #1
ontariomom
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A few questions......who can help me?

So i have a peri rectal fistula. Its a complex fistula in that it is horseshoe shaped and deep. I had a seton put in just over a yr ago.

It started as a large(fist sized) abscessed that ruptured and i refused packing--coudnt stand the pain-- it began to heal nicely, then one day i was in pain again, and thats when they told me ti was a fistula. I also have one in my my other bum cheek now as well. Both are with in centimetres from my anus.

It weeps when i have a lot of D and then aches as well. Does anyone else experince this?I have discovered that i will feel a bad ache in my butt cheeks when i need to have a BM and sure enough about 15 min alter i am running to the bathoom. Does anyone else feel this? The ache is better after the BM although there are days when having BM make it worse. Espcially if its been a bad bathroom day.

So now, a year and half after all this started, my GI has suggested either Humira or Remicade to heal them.

What about the drain? Will that come out before i start or with i heal with it in? Or? I just have no idea what i am in for. And i find i am stressing about it more and more......
09-05-2012, 06:10 PM   #2
AlliRuns
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I get a burning feeling from my fistulas when I have a really bad bathroom day. If my stool is really runny it seems to make it worse, if they are kind of formed then it doesn't seem to bother the fistulas so much.

Sorry I don't have any advice on Remicade. I haven't been diagnosed yet because I'm only displaying perianal disease so my only treatment options have been surgery (twice), and flagyl/cipro.
09-06-2012, 07:28 AM   #3
Aussie
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Hi OntarioMum, perianal Crohns can be very difficult to treat. There are a few general principles.

1. Usually pain means pus and pus needs to be drained. Should also be on oral antibiotics, ciprofloxacin would be the best, well tolerated. MRI of the Perianal region probably the best test to give a roadmap of the fistula(s).

2. If you have a fistula that is discharging then you should have a non-cutting seton stitch inserted, the role is just to keep the fistula tract open so drainage can occur and an abscess doesn't redevelop. In your case, you have a horseshoe fistula, so you occasionally need two setons to adequately drain, one in each limb of the horseshoe.

3. Once drainage is secure (ie. abscess drained and seton in) then you can look at treating the fistula - biologic therapy in combination with antibiotics is the best for this.

4. Once the drainage from the fistula stops the seton needs to be removed (the fistula tract won't heal with the seton in, it's job is to keep it open) to allow the tract to heal. Usually a good time is between the 2nd and 3rd loading dose infusions of Infliximab for example.

5. If the Perianal disease is truly ruining your life, then a defunctioning ileostomy is a possibility, although successful reversal is rare.

6. Need to control luminal Crohn's which can drive the fistula, so,will need endoscopic assessment, particularly of the rectum.

Good luck.
09-06-2012, 08:09 AM   #4
ontariomom
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1: I do have a slight amount of pus that drains, esp when i am sore. Nothing major. I was on antibiotics approx 7 times in the last year and by the end they werent helping. Basically they said if it was draining on its own then at least it was coming out. If the consistency or color changes i worry.

2: i have had a seton in place since june 2011. And i have had an MRI that has mapped it. The colorectal surgeon has opted for me to see The GI and get treament over surgery. But seeing as my appts are about 3 months apart i dont have alot of info. The GI took my history had a great talk with me, and said at the next appt we would discuss treament options which he said were Remicade or Humira.

3: So i am waiting, again, on the GI to contact me as he needs another colonsocpy first......or possibly does. Again, just waiting......while i am waiting, jsut trying to gather as much info as i can.

4: the drainage rarely stops. Perhaps because i am stressed, perhaps caue i have so much D lately but i almost always have some drainage. Sometimes barely enough to notice but its there. I think i have had maybe a month total where there has been none in the last year and half.

5: i wouldnt say its ruining my life. THIS IS my life right now. I have learned to live with it and work around it. Its not always fun and yes i do get angry but i figure i have to learn to deal right?

I have crohns in the terminel illieum..but havent recieved an "official" dianogisis yet as the GI says he wants to be 100 percent sure. He trusts what the dr said from my small bowel through, but says that another colonoscopy would just give him a better idea of exactly where.....but He also said it is MY choice. If i dont want to do a scope again we dont hve to.

I just hadnt been told about when they would take the seton out or what would happen with that or how do they know if the meds are working or how fast do they work or what really happens when i get the meds??? I know they are injection meds but thats all i know.......remicade is iv right? so how does that work???? How does humira work? I have so many questions.......
09-06-2012, 08:33 AM   #5
KWalker
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Welcome from Ontario! Check out my thread called "lots of blood/pus" Although I didn't have a fistula, I just had two pretty hefty surgeries for my abscess back in November, and again in December of 2011 which has left me with a T shaped scar with the largest incision being 7 inches long. I was like you with thinking that the packing was too painful but I tell you, with the proper pain medication (I was on perococets) 30 mins before they did the packing it made quite the difference. I even had my fiancee who was willing to learn to do the packing so that way we could take as much time as needed to give the least pain as possible. The first few times were the most discomforting but after that it does get a lot better.

As far as Remicade vs. Humira, they both have their pros and cons. I personally believe Remicade is much more effective but I believe it's also more dangerous and it also needs to be administered in a hospital where you are required to sit through the IV (which takes 4 hours I believe). Humira can be done at home if you're comfortable with it. I injected it through an epi pen style injection where you click the end and brace yourself for probably the worst thing you've ever felt in your life (in my opinion). I never got used to the feeling of the Humira going in, so I would definitely opt for the syringe if I had to do it again.

Remicade is monthly vs Humira which is bi-weekly or even weekly
Remicade takes hours vs. Humira which is done in under a minute
To me, Humira hurt much more
To me, Remicade is much more effective
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Diagnosed:
Age 2 (1992)

Previous Meds:
Prednisone
Remicade
Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
09-06-2012, 08:42 AM   #6
ontariomom
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KWalker hi!!1

I think i actually did read that post....or i remember seeing it!

Ugh yes see they would only give me T3 for pain!!!! I have asked my family drs for more but they wont. Its like they dont understand!!! And let me tell you they do nothing, not for packing not for any other pain either! They help headaches......but that is about it! I am at a point where i am working through the pain cause taking them does nothing cept make my feel a little loopy at times.

see....I hate needles. Of all shapes and sizes. I panic everytime i need to get one or an iv or anything.

So for me, if i had to do it myself and i knew it hurt, i wouldnt do it......i can honeslty say i would rather feel how i feel right now forever then do that.

I think that Remicade seems to be my choice righ now from what i am hearing from people......

Thanks for sharing your thoughts on them, it really does help!
09-06-2012, 08:52 AM   #7
Aussie
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Remicade is an intravenous infusion, you get 3 loading doses at 0 then 2 then 6 weeks, then every 8 weeks. You have to have the infusions in hospital or an infusion centre.

Humira is a subcutaneous injection, you get the injection every 2 weeks, initially 4 shots, then 2, then continue with 1 shot every fortnight. Keep it in the fridge at home, can give it to yourself.

They both work by blocking TNF (tumour necrosis factor) which is a molecule that significantly coordinates the body's inflammatory response.

The key with fistulising Crohns is to be aggressive - biologic therapy (Infliximab or Humira) with ciprofloxacin, as soon as the drainage from the fistula stops (can be from days to weeks to months) then remove the seton. Then hopefully it heals.
09-06-2012, 09:00 AM   #8
AlliRuns
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kwalker, thanks for the low down on Humira and Remicade.

Ontariomom,
I hate needles too, but I prefer a nurse give me an IV than have to inject myself.
09-28-2012, 04:15 PM   #9
greenhalgh47
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I get a burning feeling from my fistulas when I have a really bad bathroom day. If my stool is really runny it seems to make it worse, if they are kind of formed then it doesn't seem to bother the fistulas so much.

Sorry I don't have any advice on Remicade. I haven't been diagnosed yet because I'm only displaying perianal disease so my only treatment options have been surgery (twice), and flagyl/cipro.
Hi I've had crohns for eight years and had bowel resection two years ago since then my crohns has been okayish but I have to have btwelve injections and I'm on folic acid tablets thing I want to ask is in march I had anal fistula surgey where he left it open to heal from inside out but two days ago I found another small bump on my anal scar could this be another abscess I hope you can advise me cheers
09-30-2012, 09:00 PM   #10
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i'd think twice before starting remicade....especially if your fistulas are a year old. get a second opinion as well. remicade & humira are ONLY effective on NEW fistulas, ask your doctor about the success rate for fistulas that old, the answer may really suprize you and make you think twice before starting something so hardcore. the info most doctors give about success using these meds is not the entire truth. i started remicade in sept of this yr per both my colorectal surgen & GI advice and was on it until may and it did nothing for me. to be honest it made things worse, i had a hell of a winter with my immune system supressed it was horrible. i have 2 small kids in school and with every bug they brought home from school i caught times 10 i spent 3 months with upper resp infection & bronchitis. when my doctors decided it wasnt working they wanted to increase the dose and i said no thanks and got a second opinion, after almost 20 yrs with the same dr i now have a new colorectal surgen and GI who i could not be more happy with. both remicade and the other are very dangerous meds and i encourage you to honestly think twice before starting them and do tons and tons of research and dont be afraid to get a 2nd or even a 3rd opinion, its your body! best of luck to you in whatever you decide!
10-02-2012, 09:33 PM   #11
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Just to share my experience, I also have a horseshoe fistula so I understand your pain and I know know how much it sucks! I was diagnosed with Crohn's in late 2009 after delivering my baby (symptoms started during pregnancy) and I have been on remicade since early 2011. The remicade seems to help but the fistula still hasn't closed up. I have been off and on antibiotics (Flagyl seems to work best, although I hate the taste).

I have seen some of the best doctors who have told me that they think remicade is best for helping with fistula closure and I am on it every 4 weeks (used to be 8 weeks but decided to get more aggressive). I have several draining setons on and I will soon be having and exam under anastesia to see if the doctors can try a flap or LIFT procedure. I have also been told about the idea of a stoma which is a possibility as well, to try and allow things to heal, but I am aware that it could come back afterwards.

I try to go on with my life and ignore this fistula and I'm hopeful that someday it will heal up. I wish you the best of luck and keep me posted on your progress. I also find that soaking in a hot bath with epsom salts every evening helps as well.
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