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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistula just won't stop!! I hate this thing!!



 
02-15-2015, 03:01 AM   #1
Nixie128
 
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Fistula just won't stop!! I hate this thing!!

I've had a fistula since July 2014 and I hate this thing!! I know we all do.. Clearly. This thing will not go away or get any better!!! I'm told it's a grade 4 fistula. It's bad apparently. I'm told it's very complex. I get that they can't go in there and cut away because it's complex... But isn't there anything they can do? I had a partial fistulotomy (sp) and a drain tube set in December 10 after months of no one doing anything to help. I don't take medicine for it because I'm told it's walled off from my body (what??? It is in my body isn't it.. How is it walled off.. Sure...) so any medicine won't affect it. Seems crazy to me but what do I know. I'm just learning. The drain tube helped but I was told immediately after surgery that it will likely fall out and I shouldn't be concerned. Great. Well it's Feb 15 and the tube slid out quite a bit. A week after surgery it slid out about 3 inches and the stitches ripped out. Surgeon trimmed it so it's more comfortable. Now it's slipped out about about 3 inches and it's causing me so much pain!! It's hanging in just barely and not draining like it used to. Not sure what's going on. I can't move my leg much because the fistula feels so full causing me to walk like a penguin. I always say it feels like a pole running down my butt to my leg. Terrible pain. I can't sit on my butt. I can't remember the last time I saw flat on my butt. Probably July 1st 2014...the day before this mess all started. Any advice with what I could do?? Anything I should say to my doctors?? Any advice at all would be greatly appreciated. I hate this thing. It hurts beyond hurts. I have a high pain tolerance and I just can't take it. Pain for 8 months straight makes me fed up with pain. I have no more patience left... I'm just being pouty I assume. I go though motions where I'm strong but other times when I'm weak and tired.right now I feel tired. Anyway any advice would be great. I hate this thing! Causes me so much pain and frustration. I had to put my schooling on hold for all this and I want to get back on with my life. Help??
02-15-2015, 08:02 AM   #2
Nym
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Have you tried doing salted sitz baths? Using coconut oil or hemp oil also helps ease things.
02-15-2015, 10:26 AM   #3
Abbynormal
 
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I also got a fistula in July 2014 and mines still here too. They are so frustrating and painful! I have been put on azathioprine for mine- not been on it long because it took the doctors that long to sort the test out. I didn't know they did grades for fistulas and I don't understand how it's walled off your body.. Mine opens just about my anus and is connecting to my bowel and it swells and bleeds often! I haven't really found anything that eases mine yet! I hope they get you sorted out soon will you have to have surgery on it because medication won't work?
02-15-2015, 10:52 AM   #4
Nixie128
 
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When I went to my family doctor she had a report saying it's grade 4.. I had to google it to find anything about that lol. I don't know how doctors are saying it's walled off either . meaning it wont be penetrated by any medicine. Which is I assume why I am not prescribed any medicine. I feel neglected by these doctors around here really. I want medicine. I want treatment. I want a sign that this thing may eventually heal. I assume that I will have another surgery to help heal this thing, but I am really not sure to be honest. I can't live with this pain constantly, it's so bad. My skin where the fistula is feels so thin because the fluid that builds up feels like it's stretching my skin. It's terrible. I sure hope you can find some sort of relief soon also! I always wondered why I wasn't on any sort of Medicine. Doesn't make much sense to me. My doctors, surgeons, colorectal surgeon all say to have sitz baths lol!!!! I hate having to change gauze every 2 hours, having to wear a pad to catch any drainage that the gauze does catch,the odor, the general yuck feeling. Knowing that my body is draining pus for the past 8 months just grosses me out. I've had every shade of drainage it seems, and now I'm stuck at what my doctor is telling me is just pus. Gross!!! I'm 29 and it makes me feel like I'm 90.

My friends are telling me to change what I eat because some foods would cause more pus and drainage than others... Like eat only fruits and veggies, healthy foods. No dairy, no greasy foods.. She's not a doctor, and neither am I, so does anyone know for that's true? It doesn't make sense to me, but.. I don't know. Any ideas?
02-15-2015, 10:57 AM   #5
Danu
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Fistulas are such assholes (pun intended). I've had a seton in mine since 2012. I am fortunate though, mines fairly simple and just drains and drains. I will eventually need a fistulotomy. Most just commenting to say I feel you, sister. Major hugs to you.
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02-15-2015, 11:30 AM   #6
Abbynormal
 
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What's a fistulotomy?
I know exactly how you feel... I'm 24 and it makes me feel old and unattractive- it's a major downer on confidence! It sounds like your do tors are useless... I thought mine were bad enough taking so long to get me on medication where as yours have basically just left you to it! Maybe if they experienced it just for a day they would be more concerned and empathetic!
02-15-2015, 11:36 AM   #7
Danu
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Yeah, I understand how you feel with the insecurities. Having puss drain out of your bum doesn't really have much sex appeal does it? 😅 so my docs are actually pretty great. I see my GI every six months and he checks the seton and fistula. Since the seton is doing so well they do just want to leave well enough alone for now. Ok, others can correct me if I'm wrong because I'm no expert, but my docs explained (two years ago now so again, I may have this wrong) that with a fistulotomy they would open up the fistula from the inside and allow it to heal from the inside out. It's one of the ways to, theoretically, permanently heal a fistula.

When I first started Humira it helped clear up abscesses that began to form. So anyways, I used to love bike riding and spin class but no cushion can make doing those activities comfortable for me. I stick to yoga and running now. But even running chafes my seton a bit.
02-15-2015, 04:29 PM   #8
Nixie128
 
Join Date: Feb 2015
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Yes, they basically cut open the fistula a bit,thats what I was told was a fistulotomy. My colorectal surgeon is great, she got me in for colonoscopy and mri quickly. Surgery was quick too. 6 days is all I had to wait. Everyone else isn't doing a whole lot to help me. It's a lot of sit and wait... But if they had the pain in my ass that I have they wouldn't sit and wait!!! I feel like they just don't take me seriously. I'm told it's worse than childbirth.. (the abscess... fistula) but yet they can leave me to this pain for 8 months... Geez.
My doctors are so bad that I had an appointment with a GI on Feb 23... They cancelled it after I've been waiting and waiting because I mentioned maybe wanting to eventually find a doctor in my own city and not 2 hours away since it doesn't make sense to keep driving so far away for every appointment. Well that was a mistake because they cancelled that appointment and said "you can't have 2 GI doctors.. "... I corrected them and said at this point I have NONE!!!! It's just been miserable.
My surgeon couldn't do a Seton because she couldn't find the" end" of the track.. Or couldn't get to it because it wraps around my anus. I was suppose to get a Seton but instead got a partial fistulotomy and a tube stuck up the track about 7 inches. Thats all she could do. And I knew she had doubts about the Seton but I was hopeful. Don't know what options are out there for me now.
02-15-2015, 04:31 PM   #9
Nixie128
 
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Have you tried doing salted sitz baths? Using coconut oil or hemp oil also helps ease things.
I do salt sitz baths 2 times a day since this all started months ago and it's never helped. But it does at least make me feel like it's staying clean. And I've never tried the coconut oil or hemp oil. What would I do with those??
02-15-2015, 07:06 PM   #10
Robrich
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Nixie I have a fistula as well not as complicated as yours and not my first time either. This one has a seton.
Antibiotics will help!
A if the docs object tell them it's worth a try. What's the harm?
Antibiotics are part of the standard protocol for Crohns.
Flagyl, cipro combination is the first choice. I can't take them anymore but I have been on augmentin now for 6 mos. if I stop iget a little of what you got.
Remicade is the best at healing fistulas but you have to clear the infection first (with antibiotics)
12 years ago after battling a fistula and abscess in the hospital and clearing it with AB, tubes, the docs are like now what some kind of surgery?
I said give me Remicade and the fistula will close, they did and it did.
1week later the Surgeon said get outta here you're a success story you don't need me
Alas nothing lasts forever.
Good luck
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Entocort
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Flagyl worked well but got PN cipro same.
02-15-2015, 07:15 PM   #11
Nixie128
 
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At the very beginning I was on antibiotics for about 2 months. Flagyl and some other one I can't remember the name. But then doctors all told me to not even bother. Would it be a surgeon/general family doctor/ or a gastro doctor that would give me medicine for the fistula. Because I've seen at least 25 ER doctors, 4 surgeons, two specialists (who specialize in God only knows what.. They were useless) and a colorectal surgeon. Only doc I haven't seen was a gastro doc, and that may be a couple more months before I get in to see one of them. I'm trying to be proactive about this, but I feel like I've hit a roadblock, again. This tube will be gone within a week I imagine, and if the skin closes over all this fluid will build up and I'll be unable to move / function all over again like I was at the beginning of all this mess. I'm in a lot of pain, but I can at least walk, and moved bit with out feeling like I'm going to be sick from pain.
02-16-2015, 12:25 AM   #12
Robrich
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Nixie finding the right doc is crucial. If possible you want to see someone that specializes in Crohns disease at least a GI who will work with you.
They told you not to bother because they had no long term solution or plan and don't understand crohns.
Basically you just keep trying everything until you find what works and that may be a combination of multiple drugs.
02-16-2015, 12:58 AM   #13
Nixie128
 
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I appreciate all the help everyone has given me. I sure wish I already had a doctor who would come up with a long term plan and solution. It seems cruel that people have to live like this with something that seems so simple in the big picture. I absolutely understand this is not the worst thing in the world and I am thankful that this is treatable. But dang!!! I need a doctor to get me on a track to wellness!!
02-16-2015, 01:09 AM   #14
Nym
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I do salt sitz baths 2 times a day since this all started months ago and it's never helped. But it does at least make me feel like it's staying clean. And I've never tried the coconut oil or hemp oil. What would I do with those??
You can ingest them: 1tsp each day. You can also use them to wipe the fistula area to improve antibacterial protection after each bowel movement.

I have had 2 abscess/fistula surgeries and while it has not healed, it has also never wept or drained pus. I also drink 50mls colloidal silver each day. You could also add this to a sitz bath along with vitamin C to boost healing.

Natural Remedy for Fistulas and Perianal Abscess

The current medical treatment for perianal abscess (which often results in a fistula) involves oral drug antibiotics and manual drainage of infection from the abscess. However, many doctors wish there was an alternative treatment, since it is so hard to get antibiotics to the actual infection site. Oral antibiotics are processed via the GI (digestive) system, so very dilute amounts end up reaching the rectal area. The good news is: We DO have an alternative treatment that delivers a very powerful natural antibiotic directly to the abscess site.

We now have a large number of sufferers who have tested this protocol and nearly all have had a marked improvement, with the majority seeing complete healing. So I have posted the protocol here and if you try it, please post your comments to let us know how it worked, whether you changed or adapted it, etc.

http://blog.listentoyourgut.com/peri...ral-treatment/
02-16-2015, 03:57 PM   #15
Nixie128
 
Join Date: Feb 2015
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Nym, your abscess/fistula doesn't drain?? That blows my mind. Mine drains non stop. Probably about 5 tbsp+++ a day. A lot it seems. I know, so gross, but this has what my life has become. Talking about and experiencing gross things. I will give the coconut oil a try, because I'm fascinated with coconut oil anyway, never even thought to use it for this mess I've got going on. Very interested now. Thanks for the information!!
02-17-2015, 02:49 AM   #16
Nym
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Very welcome, Nixie. I really hope you'll be free of the messy fistula asap. Add a tsp of the oil to your salted sitz bath before bed ... and sleep (and feel) like a baby! I have solved vaginal thrush with nothing but coconut oil and I'm in no doubt of it's internal benefits. My nails, skin and hair no longer dry, brittle, flaking, itching mess it once was. I also healed a pretty bad wound on the underside of my forearm with coconut and hemp oil. No proud flesh there at all. ♥
02-23-2015, 06:44 AM   #17
MikeinBklyn
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Nixie, has your doc discussed going on a biologic drug such as Humira or Remicade?

Humira closed my fistula in a few days. Mind you, I had 2 fistulotomies and seton placements prior to going on Humira.

Best of Luck
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02-23-2015, 09:54 PM   #18
Danu
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Oh I love putting coconut oil on my fistula/seton! It's very soothing.
02-24-2015, 05:27 PM   #19
Nixie128
 
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Nixie, has your doc discussed going on a biologic drug such as Humira or Remicade?

Humira closed my fistula in a few days. Mind you, I had 2 fistulotomies and seton placements prior to going on Humira.

Best of Luck
My doctor hasn't discussed any medicine or anything to fix the fistula except for a Seton surgery which when I was in for surgery she couldn't do, so she ended up shoving up a tube to help it drain, but a week ago my drain tube fell out.... So now I'm left with a hole where the yuck drains out. I see a GI doc this Thursday so maybe he will have some ideas. I'm crossing my fingers
02-24-2015, 07:57 PM   #20
norky90
 
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Hi am still new to all this and only found out i have crohns or colitis ( still waiting second test) as after many years of constant toilet problems my doctor finally had a look and found a fistula. My question is can it get that bad that it feel's like its blocking you from going the toilet

Last edited by norky90; 03-01-2015 at 03:38 AM.
02-28-2015, 02:54 PM   #21
Nixie128
 
Join Date: Feb 2015
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Met my GI on Thursday and I pretty much love him right about now!! Got good feelings about him. He pressed on my stomach and asked if it was tender. I said yes,so now I have to go for a small bowel xray. I had been feeling "swollen" in my stomach for over a week, so when he asked if I was tender I knew I wasn't crazy. I have to go for ANOTHER colonoscopy though. Ugh!! I just had one 3 months ago!!! Ugh. But I'll do it... Because I have to. Doctor said he might prescribe me biologics for the fistula. Because it's a grade 4 intramuscular blah blah blah. So I didn't learn a whole lot about crohns on this visit or how they will fix me up a little, but I'm on the right track it seems and the doc is awesome. So I'm hopeful. Colonoscopy is scheduled for March 23...and it's a 4 day liquid prep... So that's gonna suck pretty hard.. But anything to. Make me better, right??
02-28-2015, 09:21 PM   #22
lgpcarter
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Sounds like you are having a really rough go of it, Nixie128. I have two fistulas that I had setons in and one that was cut open in December of last year. I have never heard of grades of fistulas, but grade 4 sounds awful.

I am happy to hear that the new GI is talking Remicade. It helped heal and keep mine closed for years. I unfortunately developed antibodies and had to go off, but it was really a miracle drug for me.

I'm also in Ontario, so message me if you want to talk about specific GIs in case we live in the same area.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 8 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
03-02-2015, 06:44 AM   #23
MikeinBklyn
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The doc is trying to preserve muscle, very important if the do a fistulotomy.

Good Luck
03-11-2015, 11:03 PM   #24
POTTYTIME!
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I have a fistula and have had it for about a year now. My GI just DX today though. He wants to do surgery due to the humira is not helping my crohn's or has not done anything for the fistula. We are waiting on the results from my CT SCAN being done Friday. Preparation for resection surgery and will take care of the fistula all at once.
04-07-2015, 05:27 AM   #25
AFS
 
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Folks,

If the fistula is classified "low anal" - meaning no inner sphincter muscle involved, little or no outer sphincter muscle - then you will qualify for lay open fistulectomy. LOF has a very success rate in low anal fistula. They totally lay the track open, from internal opening to external opening through the anus. It will heal nicely from inside out.

Patients like us - mine is a high anal Trans-sphincteric fistula - suffer without clear treatment choices. I have had 6 I&D so far. Fistula repair (ERAF, LIFT, plug .. etc) procedure has not even been discussed. Suffering since Nov 2013.
12-01-2015, 12:42 AM   #26
James80
 
Join Date: Dec 2015
Virgin cold pressed coconut oil. I've had a fistula for years. For me, I put suppositories up there after every BM and I feel completely normal. I highly recommend it.
01-02-2016, 05:13 PM   #27
earthshine
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Virgin cold pressed coconut oil. I've had a fistula for years. For me, I put suppositories up there after every BM and I feel completely normal. I highly recommend it.
Do you make the suppositories with the oil? Does it affect amount of drainage
01-02-2016, 07:36 PM   #28
James80
 
Join Date: Dec 2015
Do you make the suppositories with the oil? Does it affect amount of drainage
Hi there, I hope everyone gets a chance to read the following: This has brought my fistula symptoms from extremely uncomfortable and unpleasant to almost 0. I make organic virgin coconut oil suppositories by melting it into mini ice cube trays. I use Nutiva organic virgin coconut oil (cold-pressed, not refined, 62% medium chain triglycerides).

I put the suppositories in a jar in the fridge. (Make sure they are small enough). After every BM, I put one inside - make sure it goes past the sphincter. The oil melts through the fistula and the results are amazing.

I used to get recurrent flare ups, where it would be so painful I could barely walk. I would exude puss for days, and would use toilet paper to collect it.

After using coconut oil, I never get flare ups. I haven't had one since using the coconut oil suppositories. My puss has gone from a level of 10 to .25. In other words I have a tiny amount of puss only on some days. I have no pain. It feels completely normal down there.

Note that my fistula has an entry/exit point that does not pass beyond the anus. If the exit point is past the anus, you will likely have coconut oil coming out the other end. But the coconut oil seems to 1. coat the surface of the fistula 2. disinfect it of bacteria. So it keeps it clean and infection free. Coconut oil is antibacterial/antiviral. This was my reasoning when I decided to experiment with it.

I wish you all the best with this. I truly hope it works for all of you! This has been a real mess, but at least the coconut oil has kept me symptom free as long as I use it every time I go to the washroom. Eventually I want to have this fixed, but being in Canada, I've had to wait it out.
01-02-2016, 10:22 PM   #29
earthshine
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Thank you so much. I think this is what may have helped me in past when I accidentally got coconut oil in the tract (applying it further up on skin, it may have melted along with turmeric into the tract opening). I will try it again.

I am wondering why your tract has not yet healed on its own with the lack of drainage?

When you put suppositories in the jar in the fridge. Do you also wrap them individually? Wondering if they stick together

I have thought about doing the suppositories for awhile, but was afraid.. Thank you so much. Feeling encouraged to try this!

Have plug surgery coming up. Will probably not do this with the plug in. But might be helpful prior to surgery to minimize drainage

If you get a chance to try hbot maybe it will help you.

Let me know if you're interested and I will post a few links here later with respect to studies for fistulas
01-02-2016, 10:24 PM   #30
earthshine
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Do you see a surgeon in Canada?
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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistula just won't stop!! I hate this thing!!
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