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03-17-2016, 03:38 PM   #1471
ronroush7
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Hi Abby,

I am just catching up as I have not been on here recently. Sorry to hear about your struggles. As for medication, I started on Humira and it worked for me for over a year. However, I did end up abscessing again. I'm now on Remicade, which has not been perfect either as I'm in a pretty bad flare (I failed Entyvio in between the two).

My understanding is that all biologics work, depending on the individual. Hopefully they find the one that is right for you. Good luck.
Amen

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-21-2016, 10:28 PM   #1472
dave13
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My GI and colorectal doc are not pleased with the progression of my fistulas.My GI wants me to add Imuran.I understand Imuran along with Remicade has shown results...just the fact of adding another 'drug'.The fistula the seton was removed from is doing fine,still draining a little,butt(ha,ha)not abscessing.My colorectal doc thought it should have dried up by now.I would be ecstatic if the other three would follow suit.The other three fistula don't want to co-operate.Hence the suggestion of adding Imuran.I see my GI in a couple weeks to discuss things.
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Last edited by dave13; 03-22-2016 at 02:04 PM.
03-21-2016, 10:32 PM   #1473
ronroush7
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My GI and colorectal doc are not pleased with the progression of my fistulas.My GI wants me too add Imuran.I understand Imuran along with Remicade has shown results...just the fact of adding another 'drug'.The fistula the seton was removed from is doing fine,still draining a little,butt(ha,ha)not abscessing.My colorectal doc thought it should have dried up by now.I would be ecstatic if the other three would follow suit.The other three fistula don't want to co-operate.Hence the suggestion of adding Imuran.I see my GI in a couple weeks to discuss things.
I hope the best for you

03-22-2016, 08:12 AM   #1474
valb
 
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Hi guys- just wanted to say another thank you for all the replies and to give you a quick update. The pained eased off a it so I went back to work, few more days sat directly on my bottom and it flared up again- sore, bleeding and draining tonnes. my GI's assistant offered to book me an appointment then send it me in the post. So not very helpful- I then decided to call my IBD nurse who said she would get in contact with my surgeon. After a while she phoned me back saying that he was busy and said I should be fine but he'll get me booked in for next next week to see one of his consultants. My nurse suggested that I go an see my GP so I called them. The GP that was working today wasn't my usual GP and had no idea what a seton was so I had to explain it to her over the phone. I wasn't holding much hope for the appointment. Luckily to my surprise she was really good and I'd say that it was infected- she gave me some anti biotics and suggested I not sit on my bottom which is going to be awkward but hopefully will clear it up and relief some pain!
Hey Abby...how are you these days? I really hope the pain has eases up for you!
03-22-2016, 06:01 PM   #1475
Jay Woodman
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My GI and colorectal doc are not pleased with the progression of my fistulas.My GI wants me to add Imuran.I understand Imuran along with Remicade has shown results...just the fact of adding another 'drug'.The fistula the seton was removed from is doing fine,still draining a little,butt(ha,ha)not abscessing.My colorectal doc thought it should have dried up by now.I would be ecstatic if the other three would follow suit.The other three fistula don't want to co-operate.Hence the suggestion of adding Imuran.I see my GI in a couple weeks to discuss things.
Hoping things improve for you Dave. Your discussions & input have always been so helpful to me!
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Perianal Crohn's
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Remicade (+Hydrocortisone)
04-06-2016, 03:07 PM   #1476
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Hi valb 😊
I'm not too bad. I'm still struggling with sitting down as my fistula just seems to be rebeling against me. I got my test results back from blood tests and X-Ray's so I can start humira next week. I go in on Tuesday to see my IBD nurse that will show me how to inject it and I will need to do the 4 injection starter booster. So hopefully things will start looking up 👍🏻
04-07-2016, 06:38 AM   #1477
valb
 
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Hi valb 😊
I'm not too bad. I'm still struggling with sitting down as my fistula just seems to be rebeling against me. I got my test results back from blood tests and X-Ray's so I can start humira next week. I go in on Tuesday to see my IBD nurse that will show me how to inject it and I will need to do the 4 injection starter booster. So hopefully things will start looking up 👍🏻
Awesome that you are starting Humira. I always feel a huge difference a week after taking the boosters. Hopefully you will too. Not fun doing all 4 shots at once but totally worth feeling better quickly. It doesn't hurt but your injection sites may become really really itchy. Mine used to but I don't have any reaction at all anymore. Good luck!
04-07-2016, 10:10 AM   #1478
lalalala
 
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Hi, I am new to this forum. I have a rectovaginal fistula. I have had a seton placement and plan to do the LIFT procedure in May. Does anyone with the same/similar condition have any information on the recovery process for the LIFT procedure? How long and severe was the pain? Was it an outpatient surgery? Did you need someone to take care of you? Thank you!
04-13-2016, 10:31 AM   #1479
Abbynormal
 
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Hi everyone, hope your all well! 😊 So I went for my first Humira injections yesterday and it hurt but I think I was expecting it to be worse. My IBD nurse talked me through it and did the first two so then I did the second two. All in my legs- which are now feeling very sore. They've swelled and bruised and my knees have been hurting that bad that I couldn't sleep! I go back to the hospital on Tuesday 26th April for the next two injections and then can start doing them at home! Seems like a pain with all the blood test but I suppose it's better than getting some of the possible nasty side affects. My nurse was worried yesterday as my hands went really itchy and red but luckily they calmed down about 10-15 minutes later.

Last edited by Abbynormal; 04-13-2016 at 02:32 PM.
04-13-2016, 06:32 PM   #1480
Kat123
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Well done Abby. The loading doses are the worst it gets easier. Though maybe you should mention the leg swelling to the nurse? I hope it eases soon. After you've been on it a while you only ha e to get the blood tests every 3 months so it's not too inconvenient X


laLalala- sorry I can't comment as not had the Lift, but sending my support. It was on the cards for me and the surgeon suggested 6 weeks off work for recovery, but I know others here have had it so they will know better than me X
04-13-2016, 08:08 PM   #1481
GABoy
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Hi everyone,

Long time. Abbynormal, the Humira injections will get much better. It becomes just like anything else, an annoyance, but nothing major after a while.

Lalalala, I have nothing to offer on the Lift procedure. I'm talking to my surgeon about a mucosal advancement flap, as my surgeon prefers that procedure to the Lift.

I wish you all the best and hope that you all find relief with your treatment.


__________________
Diagnosed with perianal Crohn's Disease: 12/2013

Surgeries:
Abscess Drainage 10/2013
Seton Placement 11/2013
Abscess Drainage + Seton Placement 4/22/2015
Abscess Drainage 10/28/2015
Seton placement 2/11/2016
Abscess Drainage 2/26/2016
Mucosal Advancement Flap 8/12/2016


Prior Medications:
Cipro, Flagyl, Prednisone, Humira, Entyvio

Current Medications:
Remicaid 6MP and Allopurinol
04-13-2016, 09:30 PM   #1482
christina57
Hi lalalal,
I just has surgery today they went in for one fistular and found 2 more so that's a total of 5 I have had.They did 3 with the plug and the colorectal surgeon says the plug is not effective.I had a general surgeon prior to now I have the colorectal surgeon.I had two setons placed today she says lets see how they go she said,the setons only last a year to two years.I guess they can close the tract but if they don't then there is the bio lift surgery.So,I can't answer how you will feel but this is my third surgery now and you do have to have someone be with you because you will be put to sleep.I hope I helped a little keep in touch...Christina
04-14-2016, 01:21 AM   #1483
Abbynormal
 
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Thanks guys, well hopefully I'll be able to sync the blood test with my b12 injection and bloods for azathioprine which they're keeping me on. My legs have light striped bruises across them (bit like a zebra!)
04-14-2016, 06:16 AM   #1484
GABoy
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Hi Abbynormal,

I don't recall any reaction like you are describing. I would just let the doc know. Good luck with everything and keep us posted.


04-14-2016, 06:39 AM   #1485
Anne cochrane
 
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Hi I'm meeting with a surgeon in may to discuss removal of a 6cm structure of the small bowel I'm wondering how successful people have found this op I was going to ask about balloon dialalation but not sure how that works either
04-14-2016, 01:21 PM   #1486
Abbynormal
 
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GABoy did you experience any aching pains in your joints? My knees, shoulders, elbows and wrist have been hurting a lot.
04-20-2016, 08:33 PM   #1487
GABoy
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Hi Abby,

I did not. My experience on Humira was great for a year. Then it didn't work anymore. I had no side effects. I'm sorry to hear that you are.


04-20-2016, 08:40 PM   #1488
christina57
To Gaboy,
Hi there I see you have been thru a lot of abscesses did you have anal fistulars? I am on my fifth one had surgery in Jan and last week both time they went in for one and found 2.I was wondering if you have had fistulars are you still getting them.Any information would be helpful thank you Christina
04-20-2016, 08:48 PM   #1489
ronroush7
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Hi I'm meeting with a surgeon in may to discuss removal of a 6cm structure of the small bowel I'm wondering how successful people have found this op I was going to ask about balloon dialalation but not sure how that works either
Did you mean stricture? In 2010, I had an obstruction and had six cm of my stomach removed. It did not send me into remission.

04-21-2016, 05:21 AM   #1490
GABoy
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To Gaboy,
Hi there I see you have been thru a lot of abscesses did you have anal fistulars? I am on my fifth one had surgery in Jan and last week both time they went in for one and found 2.I was wondering if you have had fistulars are you still getting them.Any information would be helpful thank you Christina

Hi Christina,

I have had 2 perianal fistula for nearly 3 years. Counting incision and drainage of perianal abscesses, I've had 7 surgeries. I've had setons put in 3 times. The medication did not heal my fistula and I currently have a seton in which will prevent the fistula from healing. They are hoping the Remicade,calms the inflammation such that I can actually have a mucosal advancement flap procedure. I see the surgeon again in June.


04-21-2016, 10:52 AM   #1491
christina57
Hi Gaboy,
You sure have been through a lot I feel sorry for us all who are fighting this constant battle.I have the 2 setons in place for a week what the colorectal surgeon told me the setons are put in to hopefully heal the fistulars and it allows them to drain so you don't get abscesses.Wow, 7 surgeries that's unreal I don't know how people work and have to deal with these.I see my surgeon on Tuesday for post op.I am in New Hampshire and it's a pretty day here today but,rain tomorrow have a good day....Christina
04-25-2016, 10:01 PM   #1492
James80
 
Join Date: Dec 2015
I want to let everyone know about how the Specific Carbohydrate Diet (SCD) has helped significantly reduce the symptoms of my perianal fistula.

I used to have occasional flare ups where there would be huge amounts of pus draining. If I wasn't having a flare up, I would have continual daily drainage. The fistula would be irritated and sometimes slightly painful.

I started the diet about a month ago, and started taking a 3 week course of Flagyl and Cipro. Of course these two antibiotics reduced symptoms to almost nothing, but I've been off the antibiotics for a couple weeks now and my symptoms are very much improved.

I actually started the diet about a week before starting the antibiotics and my drainage reduced to about 10% of what it was before the diet. Then the antibiotics reduced it again to 0%.

But now that I'm off the meds, there has been a tiny bit of drainage, but my symptoms are now almost at 0. I'm hoping that this continues. Time will tell, and I'll let you all know if my symptoms continue to stay away!

I hope this diet will be one of many tools to fix this once and for all. You can find the full diet online - you need to follow it very carefully. Do your own research, but no grains, corn, dairy (other than yoghurt you can make on your own), and you're allowed cheese.

Anyways, I'll post again if things continue to go well.
04-25-2016, 10:20 PM   #1493
ronroush7
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I want to let everyone know about how the Specific Carbohydrate Diet (SCD) has helped significantly reduce the symptoms of my perianal fistula.

I used to have occasional flare ups where there would be huge amounts of pus draining. If I wasn't having a flare up, I would have continual daily drainage. The fistula would be irritated and sometimes slightly painful.

I started the diet about a month ago, and started taking a 3 week course of Flagyl and Cipro. Of course these two antibiotics reduced symptoms to almost nothing, but I've been off the antibiotics for a couple weeks now and my symptoms are very much improved.

I actually started the diet about a week before starting the antibiotics and my drainage reduced to about 10% of what it was before the diet. Then the antibiotics reduced it again to 0%.

But now that I'm off the meds, there has been a tiny bit of drainage, but my symptoms are now almost at 0. I'm hoping that this continues. Time will tell, and I'll let you all know if my symptoms continue to stay away!

I hope this diet will be one of many tools to fix this once and for all. You can find the full diet online - you need to follow it very carefully. Do your own research, but no grains, corn, dairy (other than yoghurt you can make on your own), and you're allowed cheese.

Anyways, I'll post again if things continue to go well.
I hope they continue to go well for you.

05-07-2016, 03:35 PM   #1494
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I'm still waiting for my consultation with a GI specialist in Manchester (17th June) but since the end of February I've been suffering with recurrent pain in the err, backside.

My doctor diagnosed a perianal abscess on 2nd March. It was so painful! I was off work for a week and put on 30/500 codein and fluoxocillen 500mg 4 times a day for that week. It eased by the end of the week but had begun draining. This continued for several days so I went back to GP. Another two weeks of antibiotics and I was less reliant on pain killers now.

8 weeks on and I'm still suffering. It keeps seeming like it heals but there is a definite long lump there. It begins to hurt again then the process starts again. I've seen two different doctors who have both fobbed me off saying it looks like it's healing well.

There is definite intermittent pain relieved when it drains. It drains daily to every other day and is often yellow or bleeds.

I'm sorry for the details, just so frustrated. I've made the decision to leave my GP surgery and go elsewhere as I have no faith in them anymore. My appointment with the consultant can't come soon enough. I know he won't be able to work miracles but he may be able to tell me what's going on.

On the plus side, I'm not getting stomach pain / upset stomach as often, though when it happens it is very, very painful. I'd say maybe twice a week now, which is better that daily!

Could anyone shed a bit of light on this for me? I know I was diagnosed with the abscess but I'm worried it has developed into a fistula. It sounds an odd question but how do they feel. I sometimes have the sensation that gas is passing through it, like a trickling feeling too sometimes.

Never though I'd be posting stuff like this on the web but I guess once you've been prodded and poked the way I have you lose any shame 😉

Thanks

Andy
05-07-2016, 03:46 PM   #1495
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I'm also intrigued as to how you know it's a fistula.

I've got a really bad fissure and am being referred to a surgeon, but recently I've noticed 'stuff' staining the TP in areas where it shouldn't. Repeatedly. Almost refreshing itself slightly. It's only blood and dirty mucous though. Told my consultant and he didn't seem concerned in the slightest...
05-07-2016, 03:48 PM   #1496
ronroush7
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Don't let it go too far. Back at the beginning of 1992, I had an abscess that they went for three months. It got really deep. They had to drain it twice. I hope the best for you.

05-07-2016, 03:49 PM   #1497
ronroush7
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Don't let it go too far. Back at the beginning of 1992, I had an abscess that they went for three months. It got really deep. They had to drain it twice. I hope the best for you.
I meant this for Andy.

05-07-2016, 03:50 PM   #1498
MeLee38
 
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According to my specialist, in can be very difficult to properly diagnose a fistula. In some cases you can feel a track/tunnel going from the lump in further or deeper under the skin towards the rectum itself. In my case he can't feel the track so I am being put under anesthetic for exploratory surgery to determine where it leads/originates. The hole of mine is extremely small but has not closed or healed over in several months now.
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Surgeries/History:
- Bartholin Cysts, Acid Reflux, Hemoirrhoids&Bowel issues, skin rashes, fatigue, joint pain
- Anal Abscess Removed (cut through sphincter muscle) Dec 2014
- Formation of Recto-Vaginal Fistula Jan2015
- Hemorroidectomy & Advanced Flap Repair Dec 2015
- Removal of peri-anal cyst Sept 2016
- MRI July 2017
- Colonoscopy October 2017
- Peri-anal cyst #2 removed Dec 2017
05-07-2016, 08:28 PM   #1499
christina57
Hi Starnett,Sorry your having so much pain an abscess is aweful to have.I have a complex fistula which means 2 tracks coming out of one hole they have yet to fix it.I had a surgery in Jan with plugs and it failed now I have two setons placed which prevents abscess and opens the tracks so it drains.I have to have an advancement flap surgery there is a 50/50 shot on that surgery the last one would be a fistulotomy which there is a small chance it could cut in to the Sphinxter muscle and leave me incontinent.Because they cut the track.Sounds like you have the similar situation as far as a fistular goes I hope you get help soon maybe ask if there are any cancellations to get in sooner.Keep us posted....Christina
05-08-2016, 02:40 AM   #1500
Chica
Starnett have you been diagnosed with Crohn's or UC? There is a guy in Manchester called Professor Carlson who is well known to be good in this area especially anal disease, lower GI Coloproctology etc. Manchester is a European Centre of Excellence for Coloproctology. If you have never had surgery & it's early days, you will be absolutely fine ( I've had 4 ops in this area as I wasn't under good care at first), just as long as you are under the care of a decent consultant. Hope the info about Professor Carlson helps, best wishes : )
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