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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Fistulas, Fissures and Abscesses Support Group



 
01-22-2014, 01:10 PM   #421
nini_mini
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@amaze- I have the same thing only its in front on my left side a little in from my hip bone. It feels like a pocket of fluid sloshing around and its really bad constant pressure when I stand or walk and I can't sit or lay down for very long or I get uncomfortable because it starts to hurt. My skin is actually swollen out a bit compared to my right. Ive had a thought that it could be one but I'm too scared to see if it is just because the thought of getting a drain put in scares the crap out of me
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Name: Nina
Crohn's Dx: april 2012
Symptoms: since Jan. 07'
Surgery on 11/6/13. Open/emerg.bowel resection, closed up with glue!
Current meds: oxycodone for pain 5-325, zofran 4mg prn, phenergan 25mg prn, remi 5mg every 8 weeks -_- boo!
Currently: "dying" from searing hot razors and a stabbing vice grip on both sides of my colon
01-22-2014, 05:07 PM   #422
Amaze
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@nin_mini

yeah im scared too
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01-22-2014, 09:23 PM   #423
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If it's tender and warm when you touch it, it might be an abscess. See a surgeon right away. Sometimes they can fix it without surgery if they start you on antibiotics asap.
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Diagnosed w/ Crohn's: 12-20-08

Currently: Imuran (125 mg), probiotics, vitamins and supplements

Past: Prednisone, Cimzia, VSL probiotics

Three rectal surgeries

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01-22-2014, 09:31 PM   #424
nini_mini
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True. I'll bite the bullet eventually, lol I'm honestly just so tired of being in drs offices, I swear I live there half the time. Lol the only one I look forward to is my remi infusion
01-23-2014, 08:57 AM   #425
Amaze
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^

I hear that. feels like the only time i go outside now is just to go to a doctors appointment :/
01-23-2014, 01:03 PM   #426
nini_mini
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^ you ain't kiddin! I mean I'd go to see someone too see if it is an abscess obviously because they're not good. But I don't wanna go through tests if there's nothing wrong ya know?
01-23-2014, 06:24 PM   #427
Amaze
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^

I most definitely understand. I hate being violated constantly. I hate that I cant even have my dignity.
01-23-2014, 07:04 PM   #428
nini_mini
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Hah. I lost my dignity a long time ago. I just don't care anymore. I mean I might freak out a little in the beginning but then I'm like fuck it I don't care anymore lol just do it so we can get this over with.
01-23-2014, 09:42 PM   #429
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True. I'll bite the bullet eventually, lol I'm honestly just so tired of being in drs offices, I swear I live there half the time. Lol the only one I look forward to is my remi infusion
Why do you look forward to the remi infusion?
01-23-2014, 09:49 PM   #430
nini_mini
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It makes flares go away and I only have to see that doc every 8 wks. Although it may be 6 if it can get moved up.
01-28-2014, 07:17 AM   #431
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Hi guys,
I have written a blog post in regards to the home remedy that I have used to dry up my fistula/abscess. I just wanted to share it with everyone in the hope that it can help others with their situation. Please have a look at mylifestylejournal dot com.
02-03-2014, 12:23 AM   #432
around the corner
 
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Thanks for sharing!!
02-03-2014, 04:04 PM   #433
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Hi I have had quite a few fistula's in the past tat started off as abscesses then into fistula's finally had surgery in Jan 2013 have an Ileostomy now which is far more easier than trying to cope with all the fistula's
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Diagnosed with Crohns 34 yrs.'' ago aged 13 surgery in 93 right Hemicolectomy. had full remission till 2008 had another surgery in 2009 & had a temp stoma. 2010 had stoma reversed back. Then had 4enterocutaneous fistula's. tried Remi & Humira to no avail ended up having surgery again in Jan 13, 4, small bowel resections, gallbladder taken out, Fistulas all removed & given a permenant Ileostomy





I may not be where I need to be but,
I thank God Im not where I use to be
02-03-2014, 08:54 PM   #434
Jajabinks
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Hi all, it is like a breath of fresh air to realise I am not alone in this battle of fistulising crohns. I have been struggling since my little girl was born 8 years ago with a peri-anal fistula. Since then, I have had 17 surgeries, including multiple seton's, plugs, laying open and finally a colostomy. I wish all my fellow crohnies a happy new year and pray that it is a year of healing. x
Hi, I'm sorry you had to go through all of that. Does the colostomy allow your fistula to heal? Just discovered I have one in my vagina today and can't stop crying....I also read that Remicade only heals 14% of rectovaginal fistulas.
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Fish oil, turmeric powder, n-acetyl glucosamine, l-glutamine, slippery elm, marshmallow root, DGL, multivitamin, vitamin D. Crohns in terminal ileum. One semester left. Academics on hold thanks to painful Crohn's arthritis...
02-04-2014, 07:06 AM   #435
Aphrodite_x
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Hi, I'm sorry you had to go through all of that. Does the colostomy allow your fistula to heal? Just discovered I have one in my vagina today and can't stop crying....I also read that Remicade only heals 14% of rectovaginal fistulas.
Oh no i didn't know this i have 2 recto vaginal fistulas

Got my Seton surgery on 6th, had two placed and one is still extremely painful and stingy, anyone know if it should still be sore after this long?

My bums killing me too, bloody threads going in are leaning on my piles n skin tags is there cream or something i can get for that?

I feel so attractive right now lol
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02-04-2014, 11:42 AM   #436
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Oh no i didn't know this i have 2 recto vaginal fistulas

Got my Seton surgery on 6th, had two placed and one is still extremely painful and stingy, anyone know if it should still be sore after this long?

My bums killing me too, bloody threads going in are leaning on my piles n skin tags is there cream or something i can get for that?

I feel so attractive right now lol

I like to use RectiCare. It has lidocaine in it, so it numbs the area. Any type of cream with lidocaine works well, and diaper rash cream works for the sore areas where the seton rubs against the skin because it protects the area by coating it.
02-04-2014, 12:42 PM   #437
Aphrodite_x
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I like to use RectiCare. It has lidocaine in it, so it numbs the area. Any type of cream with lidocaine works well, and diaper rash cream works for the sore areas where the seton rubs against the skin because it protects the area by coating it.
Lidocaine, thank you, ill get to pharmacy everything worth a try
02-05-2014, 08:54 AM   #438
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Two fistulas, one in remission with Remicade but returns during flares and one abscess treated with hot baths. Lidocaine cream is helpful and can be obtained by script.
02-12-2014, 01:02 AM   #439
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Hey im new here. Was wondering if anyone has had any success with non surgical treatments for a rectovaginal fistula. Im currently trying humira and Imuran both of which I have been on before for flare ups.
02-12-2014, 01:13 AM   #440
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Also having horrible leg and lower back aching, iron deficiency anemia, dizziness, night sweats, and chills, rash undet breast, but no fever. Seems like a lot of wierd unrelated symptoms.
02-12-2014, 03:37 AM   #441
Amaze
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Welcome!


Fistulas rarely heal with out surgical treatment. I know it sucks. I got two fistulas and I fkn hate them

I have heard that remicade and with the combo of flagyl and cipro some people has had luck with getting theirs closed.
02-12-2014, 03:39 AM   #442
Amaze
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Also having horrible leg and lower back aching, iron deficiency anemia, dizziness, night sweats, and chills, rash undet breast, but no fever. Seems like a lot of wierd unrelated symptoms.
These are most likely side effects from the drugs they have you on.
02-12-2014, 07:07 AM   #443
Maxwelljax
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I have had a peri anal fistula since Sept 2012 that started with abscess. Had surgery in February 2013 to plug it. Didn't work! Have had 2 rounds of flagyl and that seems to work the best. Nearly closed both times but unfortunately opens back up once I'm off of med for a week or so. Started Remicadee in Jan and have had first 2 doses. So far results are questionable. Some days I think I've made real progress and it's closing and then pain and drainage starts again. Really frustrating but I think overall it's improving. From what I understand Remicadee has a better cure rate than Humira although I'm not sure it's great for either. 60% with Remicadee verses 30% for Humira I believe. I guess fistulas can take some time to respond. My GI has advised me to get through the 3 loading doses and at least 1 more before I pass judgement so I'm trying to be patient. You might want to talk to you Dr about switching to Remi if you don't see a response. Good luck!
02-12-2014, 08:19 AM   #444
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New to the forums. Have had my two most recent fistulas for almost 2 years. Humira seems to be working on the inside but the fistulas just won't heal.
02-12-2014, 08:31 AM   #445
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I like to use RectiCare. It has lidocaine in it, so it numbs the area. Any type of cream with lidocaine works well, and diaper rash cream works for the sore areas where the seton rubs against the skin because it protects the area by coating it.

I use a product called Sensi-care by Convatec. Usually it has to be special ordered but it's over the counter. It has zinc oxide which provides a dry almost powder type cream barrier that is very effective in not only soothing the skin but helping to keep the skin drier and promotes quicker surface healing.
02-12-2014, 10:11 AM   #446
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I have had a peri anal fistula since Sept 2012 that started with abscess. Had surgery in February 2013 to plug it. Didn't work! Have had 2 rounds of flagyl and that seems to work the best. Nearly closed both times but unfortunately opens back up once I'm off of med for a week or so. Started Remicadee in Jan and have had first 2 doses. So far results are questionable. Some days I think I've made real progress and it's closing and then pain and drainage starts again. Really frustrating but I think overall it's improving. From what I understand Remicadee has a better cure rate than Humira although I'm not sure it's great for either. 60% with Remicadee verses 30% for Humira I believe. I guess fistulas can take some time to respond. My GI has advised me to get through the 3 loading doses and at least 1 more before I pass judgement so I'm trying to be patient. You might want to talk to you Dr about switching to Remi if you don't see a response. Good luck!
Thanks, feeling a little frustrated I looked it up and you're right Remicade is more effective you would think my doctor would have known that also I just found out that with my Humira starter pack I was supposed to inject for pens the first day and then two more two weeks later nobody told me that it only said take as directed and I wasn't given any directions when I took you Mira before I just remembered one every other week so that's how I've been doing it.
02-12-2014, 10:13 AM   #447
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Has anyone else experienced significant leg/muscle aching with flares?
02-12-2014, 07:31 PM   #448
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I am new to this disease (just diagnosed Feb 6). I go to my doctor tomorrow morning to talk about various treatment options. He is starting me on a pill, and is letting me decide the other treatment, either a shot i give myself once every 2 weeks, or i will have to go in for a blood infusion once every 8 weeks. Can anybody tell me the pro's and con's of each one, which one they would recommend, etc. He also told me i have a fistula from my small intestine to my large intestine. I was told they are going to try to close it up with medication first, and possibly surgery if the medication doesn't work. How effective is medication on closing up fistulas? This recent diagnoses has really taken a toll on my wife and I. She is currently 14 weeks pregnant so this added stress is really a nightmare. There is also a chance i will be medically discharged from the army because of this, which as you could imagine with a wife, daughter, and another on the way, is a very scary thing to imagine. Any advice and support would be greatly appreciated.
02-13-2014, 12:26 AM   #449
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So sorry you are going through so much. This disease is great at messing up people's lives. From what I have learned fistulas respond best to Remicadee infusions. Humira injections have a much lower cure rate. Most of us posting here with fistulas seem to just be starting Remicadee. Ive had the first 2 loading infusions and the third will be in on the 24th. I haven't seen much change yet but from what I understand fistulas take longer to respond. I have read a lot of older posts here from members that have had successful healing with Remicadee though. Good luck with treatment. Oh and congratulations on a new baby coming. That's really exciting and definitely gives you something wonderful to look forward to. Hopefully the military will give you the time to heal. Thanks too for serving our country!
02-14-2014, 10:27 AM   #450
mish2575
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Remicade worked on closing my rectovaginal fistula for good. Humira did not work with subsequent fistulas.

I found out I was having night sweats from taking a multivitamin. It didn't matter which kind. I think they contain too many minerals and vitamins and it must have caused my body to try to sweat them out at night.
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