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04-28-2013, 11:35 PM   #121
aloe
 
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I would be interested in that too.

I'm a few days away from my third Remicade infusion. I've still been feeling so much better! I met with the doctor and she thought that was a good sign, but can't tell for sure until doing a colonoscopy, which won't happen until Nov.

The fistula was still draining when she checked, but she said it's too early to tell if the Remicade isn't working. I was scheduled to get the seton taken out in May, but she said to cancel that and wait and see. Greaat. Of course now I'm worrying a little more that it's not going to work on me since I keep reading people here saying they can feel their fistulas closing after starting Remicade. Have they really healed, and how long does it take? How can you feel it? I am not in any pain down there, but it obviously isn't closing yet if there's drainage.

If after the colonoscopy they tell me it's not working, I will be unwilling to stop taking it though, because it's making me feel so much better! That would be a messed up situation.
04-29-2013, 05:46 AM   #122
MikeinBklyn
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Aloe,

Ya gotta give it sometime. Although I was not on Remicade, the dosage of my Humira injection had to be tweaked to get the fistula to close. Once the dose was upped, bingo, gone.

Myria,

I too had the same healing scenario as you. The fistula would almost heal but remain tender and bubble. What I was told is that the bubble is the last of the infection. The bubble might have to be opened to clean and drain. But give it a little more time. If it continues see the doc.
The doc upped my Humira dosage to every ten days from every two weeks and it was gone in a few days.


Best of Luck!
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04-29-2013, 06:45 AM   #123
Misseireann
 
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Thanks for the reply! I have taken flagyl and cipro with the fistulas, but choose not to be on them for a prolonged period of time for obvious reasons. I was going to have a pretty invasive surgery to correct them, but decided that there comes a point when enough is enough. As a Crohn's patient with a jpouch, I feel that eventually I might ultimately end up with an ileostomy, and I don't want to put myself through any more surgery than necessary. That being said, some days my bum really just needs a break!
04-29-2013, 08:55 AM   #124
Heat92627
 
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I finally got my diagnosis of Crohn's Feb 15, 2013 and was hospitalized with a perianal abscess on Feb 20 (the day before my birthday) for 4 days. I have been packing that darn wound twice a day for the last 2 months. The pain meds caused a thrombosed hemorrhoid (double ouch!). The icing on the cake was a large fissure my new CRS saw on Friday. I am so happy I have found this group. I have felt so depressed and alone. My father has Crohn's but has luckily never suffered in this way. It helps to know that there is hope and people to talk to
04-29-2013, 06:35 PM   #125
aloe
 
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Aloe,

Ya gotta give it sometime. Although I was not on Remicade, the dosage of my Humira injection had to be tweaked to get the fistula to close. Once the dose was upped, bingo, gone.

Myria,

I too had the same healing scenario as you. The fistula would almost heal but remain tender and bubble. What I was told is that the bubble is the last of the infection. The bubble might have to be opened to clean and drain. But give it a little more time. If it continues see the doc.
The doc upped my Humira dosage to every ten days from every two weeks and it was gone in a few days.


Best of Luck!
Thanks for your feedback Mike! That's amazing that it closes in a few days once it decides to heal. What a weird thing fistulas are. I don't understand them. But I hope that happens to me.
05-01-2013, 08:58 PM   #126
Sailorluna
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So, I was supposed to have the seton removed today but the surgeon has declared too much inflammation in the track and after cleaning up the track some sent me home with a bleeding fistula packed with gauze.

I get it that it is not worth the risk if it is going to just abscess again but it really brought me down. I have been excited about getting it removed for weeks.

Sorry about my whining, I figured you guys were the only ones that would understand.
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
05-04-2013, 05:12 PM   #127
nogutsnoglory
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Just got diagnosed with a perianal abscess. I don't see anything when trying to look in the mirror and it is supposed to be small but hurts terribly. I'm not sure what to expect or what's next.
05-04-2013, 05:26 PM   #128
Essieluv
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Do you and your doctor have a treatment plan for your "new" abscess? Just a piece of advice, if you have to get it lanced or drained insist on being put out for it. I had mine drained with local anesthesia and it was the worst pain I have ever experienced, and you know we IBDers are not squeamish when it comes to pain. Not trying to scare you or worry you, I just want you to be aware. Of course, I also had a bad doctor who refused to consider a diagnose of Crohn's even though my SED rate was astronomically high (before I was diagnosed), and I also had a fistula at the same location. I hope yours gets better and the pain diminishes. Do you have an Lidocaine crème or gel to put on the abscess to help with the pain? I used it every day and it really did help. You do need a prescription, and I would recommend the gel as it seems to work better for me. Stay strong!
05-04-2013, 05:34 PM   #129
nogutsnoglory
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Thanks I haven't discussed a treatment plan yet but from what I'm reading it seems surgery is the only option. How quickly do I need surgery?

I am actually going to buy lidocaine OTC right now to deal with the pain till I see my doctor.
05-04-2013, 05:43 PM   #130
Essieluv
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Oh, it is OTC? I had no idea, that could be a lifechanger I'm not sure how quickly you need to get treated, but it's probably better not to wait too long and let it get worse. I know that sometimes abscesses are treated with antibiotics, so that might be an option.
05-04-2013, 05:46 PM   #131
nogutsnoglory
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I hope my doctor will say that's an option for me! Maybe the lidocaine higher strength or brand is prescription only but it seems there are some OTC options. Ill know soon since I'm going to the pharmacy.
05-04-2013, 06:31 PM   #132
nogutsnoglory
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Yep got it just now by Burn Jel Plus it's 2.5% lidocaine. I put it on and feel the surface pain reduced quickly but still have deep shooting pain which hopefully will diminish with this cream.
05-04-2013, 07:15 PM   #133
Irish86
 
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I'm new to support group but need to be in contact with people who understand about Crohn's. In a flare, can't take any biologics or Imuran, messed with bone marrow. Precnisone 45mg a day. Fistula, anyone heard of hyperbaric treatment for fistula's, my GI is referring me for it, non invasive oxygen therapy. I guess drug trials are next.
Well my Dr told me don't do surgery it will make that area weaker
05-04-2013, 07:17 PM   #134
Irish86
 
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Have 3 now all outside of butt! They drain and smell all the time Sucks! Had a bag 11 years don't want one back. Have seen from others on here you can get fistulias either way bag or no bag. Good Luck All PS I'am 6mp many other never seem to get better.
05-04-2013, 07:18 PM   #135
Sailorluna
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Once you are on antibiotics sometimes they will not have to rush to surgery. If you get a fever though you should not take it lightly.
05-04-2013, 07:35 PM   #136
Irish86
 
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Once you are on antibiotics sometimes they will not have to rush to surgery. If you get a fever though you should not take it lightly.
No they never work. i quess Iam just lucky
05-11-2013, 09:25 AM   #137
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I received a fistulectomy back on April 22. I had battled the fistula for about 2 years. Multiple seton placements, fistula plug procedure. None worked. So far it seems to be healing slowly. I am also a blessed liver transplant recipient and am on immuno suppressant drugs, so i heal slowly. This is the best ive felt in a long time and i'm very hopeful. Thank you to so many members of this support group for all the information ive found here.
05-16-2013, 10:54 PM   #138
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Hmmm.. got close but it's not over.. I had a fistulectomy on Feb 20th. Prognosis was it would heal in 6-8 weeks. At 6 weeks it was slow in healing. CRS put me on Flagyl and within one week, all pain associated with my fistula was gone. It never did heal completely though and now at week 12, some infection seems to have recurred. In addition to Flagyl, the CRS now put me on 2 weeks of 100mg Vibramycin (Doxycycline). Are there any others out there who have used Doxycycline for fistula infection and if so what was your experience?
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05-17-2013, 01:20 AM   #139
Jo-b1
 
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· Stoma
I've had fistulas since 1993,they seem to come after I've been overdoing things physically,I think they start from getting infected inside,so it starts building up and can't escape so it tunnels thru and round tissue and muscle until it finds way out and starts draining,I've had them coming out my belly button crazy.ive had lots of surgeries from setons to large drains being stitched into buttocks.15 min Epsom salt baths great relief for them.i wish you well in this battle and hope you beat the bugger.
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05-19-2013, 12:41 AM   #140
Daisy G
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Hi all, I've just subscribed to the group. I haven't visited the forum in a while and glad to see there are so many different support groups that have started up.

I have ongoing perianal disease and currently have two setons in place due to fistulae. I had a MRI scan done (last week) a day prior to my appointment with the doctor. The following day at my appointment with the doctor he said that my fistulae are complex! He further said that he would have to discuss the MRI results with is colleagues and my GI. Will have to wait three weeks to hear how the colorectal surgeon will proceed.

The way he spoke sounded rather ominous but I hope that it won't be the case when I next see him.
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Crohns Disease diagnosis: July 2007
Osteopenia diagnosis: March 2012
Current medications: Puri-Nethol (Mercaptopurine), Remicade (Infliximab)

Previous medications: Augmentin, Metronidazole (Flagyl), Amoxycillin, Prednisone, Pentasa (Mesalamine), Imuran (Azathioprine), Salazoypyrin (Sulfasalazine), Humira (Adalimumab), Salofalk Mesalazine enema & Budenofalk (Budesonide) enema.

Previous supplements: Ferro-Gradumet; Duro-K (Potassium Chloride)

Last edited by Daisy G; 05-19-2013 at 12:42 AM. Reason: spell check not done prior do posting
05-19-2013, 05:20 AM   #141
staloffn
 
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Debating... so the remicade has been failing to control most of my symptoms since dec. tx in jan. lasted a few weeks, got really sick in march just before my next tx which they raised my dose to 800mg. that only last 2wks before my i flared again but kept the fistula in check. about 5wks out i had a colonoscopy and 2 days later it started to abscess. coincidence? not sure that it was. got through the next 3wks in well you know, agaony/antibiotics that really did nothing. just had my remicade last tues. and it put everything back under control by the next day.
so i know i only have a week at best before all my other symptoms return but i wonder what the fistula is going to do. i guess the real question is:
if the fistula doesn't return to being grumpy for the 8 wks, but all the other things come back would you continue on the remicade? i feel like i can totally deal with the other things flaring but not the fistula. dr. and i have been discussing switching to humira but i'd hate for it not to control the fistula. and i feel like i want to get the most time without the fistula being a problem on the remicade. all the other things have been miserable but when the fistula made its come back it really put that in perspective as being the absolute worst part of this disease for me. I'm leaning toward staying on the remicade unless in 5wks the fistula makes another come back but i truly think it was the colonoscopy that left it vulnerable to becoming infected. pls... your thoughts. think i am going to make myself crazy choosing wisely.
05-19-2013, 08:06 AM   #142
nogutsnoglory
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Do abscesses cause you to lose appetite? For the last 2 weeks I am barely eating. I have lost 10 pounds and just have no desire to eat much of anything.
05-19-2013, 10:16 AM   #143
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In response to nogutsnoglory, I was in the hospital a few years ago with a bunch of different issues. They were trying to figure out what was wrong with me. This was about a 3 month stay. Never did tell me exactly what was wrong. I had really sensitive places in my mouth, I dont know if it was due to that or what. But everything tasted horrible. I got to a place i refused to eat and they put in a feeding tube. It eventually went away and i dont know why it did it. I just had a fistulectomy, and all during the fight with the fistula, i ate like a hog. This is the most confusing disease. So many different issues with everyone.
05-19-2013, 12:15 PM   #144
nogutsnoglory
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It's true it's a weird disease. Why would an anal abscess cause me to have no appetite? Maybe my body is just tired because its an infection. I'm trying to force myself to eat a bit.
05-19-2013, 12:50 PM   #145
Lisa
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It's true it's a weird disease. Why would an anal abscess cause me to have no appetite? Maybe my body is just tired because its an infection. I'm trying to force myself to eat a bit.
Not having an appetite could be from your body fighting the infection....just not wanting to eat...hope you are able to get it sorted out soon.
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While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
05-19-2013, 05:20 PM   #146
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...i truly think it was the colonoscopy that left it vulnerable to becoming infected. pls... your thoughts...
Very interesting, I had not put the two events together but I too had a colonoscopy on Nov 27th, then fistula problems (pain) started in late December - did not know what it was then. Looking back, I'll bet that was when the infection started. By early February, I was in absolute terrible pain during BM and had lost weight, no appetite, and extremely weak. I thought I was dying for sure. My G.I. who did the colonoscopy did not recognize what was happening. I'm disappointed in that. But somehow he knew enough to refer me to a CRS who knew what an infected fistula was. Feb 20th had Fistulectomy. I think your right on.
05-19-2013, 09:34 PM   #147
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It was 2 days after and it got infected bad. I'll know if it doesn't come back over the next 7wks. Think it will be clear cut and i'll repost saying if you have a fistula i'd stay clear of a colonoscopy. I know if it stay under control i won't be going again.. not worth it
05-22-2013, 10:55 AM   #148
nogutsnoglory
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I understand if its a superficial abscess that sometimes it can be drained at the doctors office. My perianal abscess is deeper, does that mean surgery requires overnight stay or more at the hospital and several weeks for the area to heal?
05-22-2013, 11:07 AM   #149
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My fistulectomy was out-patient surgery. Normal recovery time expected was 6 to 8 weeks. My responsibility was to keep it clean and change the dressing periodically.
05-22-2013, 11:26 AM   #150
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My fistulectomy was done outpatient also. Its been about a month now and everything is going great. Had a check up with the surgeon Monday and im very optimistic this has been taken care of finally. But with this disease i guess you never know. I hope all goes well for you.
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