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



 
12-05-2013, 04:43 PM   #361
mel.k
 
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Hi everyone hope you are all good. Thought since id my first fistula removed on the 28th nov 2013 I would join the group.
12-05-2013, 11:43 PM   #362
ronroush7
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Welcome.

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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.
12-07-2013, 08:42 AM   #363
Carlee
 
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Hi, where was your fistula? Dr says I need surgery for mine between sm and large int. scared!
12-07-2013, 03:30 PM   #364
BlessingsK
 
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Carlee, what are your symptoms? Do you have crohn's ? I thought fistulas were tunnels from anus to buttock or anus to vaginal area.
12-07-2013, 05:43 PM   #365
nogutsnoglory
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Fistulas can occur anywhere and sometimes if a piece of intestine loops to another it can be harmless. Fistulas are only problematic if they connect to an inappropriate organ, leak or cause pain or infection.
12-08-2013, 09:44 AM   #366
Carlee
 
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I do have crohns, but to me its mild I don't know.Have a lot of scar tissue in the transverse colon, and the fistula is also in that area. Dr says its a bad place and I have to talk to surgeon to see if he will even attempt it. also have a lot of looping through my belly. Whatever that means. This is all very confusing to me. I was diagnosed about 10 years ago, and have only a handful of flares.And I'm going to be honest being on this forum scares the hell out of me. Is this what my future is going to be like? I think about all the stories of all of you and can't imagine what its like especially the children.I pray all of you will have some relief very soon.
12-09-2013, 12:12 AM   #367
ronroush7
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I do have crohns, but to me its mild I don't know.Have a lot of scar tissue in the transverse colon, and the fistula is also in that area. Dr says its a bad place and I have to talk to surgeon to see if he will even attempt it. also have a lot of looping through my belly. Whatever that means. This is all very confusing to me. I was diagnosed about 10 years ago, and have only a handful of flares.And I'm going to be honest being on this forum scares the hell out of me. Is this what my future is going to be like? I think about all the stories of all of you and can't imagine what its like especially the children.I pray all of you will have some relief very soon.
Don't mean to scare you. Wish you the best.

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12-11-2013, 02:05 PM   #368
ey218
 
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Well, so much for being in the undiagnosed club. I saw my CRS last night, who said after the bloodwork (Prometheus) and his findings during fistula surgery (two high anterior fistulas), it was clear to him that I have Crohn's. He referred me to the GI today, who sent me for every blood test under the sun, and has scheduled a colonoscopy for 1/9. He wants to put me on Humira as he believes there is 70% chance that this medication will close the fistulas.

So, now what? Has anyone experienced fistula closing with Humira? Any advice on diet, etc.?
12-11-2013, 02:16 PM   #369
Essieluv
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Well, so much for being in the undiagnosed club. I saw my CRS last night, who said after the bloodwork (Prometheus) and his findings during fistula surgery (two high anterior fistulas), it was clear to him that I have Crohn's. He referred me to the GI today, who sent me for every blood test under the sun, and has scheduled a colonoscopy for 1/9. He wants to put me on Humira as he believes there is 70% chance that this medication will close the fistulas.

So, now what? Has anyone experienced fistula closing with Humira? Any advice on diet, etc.?
So sorry! But at least you know what the problem is now, so you can work to get it fixed. Humira is a really good choice for fistulas! It can heal them up really well. It's good that your doctor has given you a sound treatment plan. I know it sucks to get diagnosed, but it isn't the end of the world either. You are so much more awesome now, because you are a super-human disease fighting machine .
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Waiting for a cure!
12-11-2013, 07:18 PM   #370
Sailorluna
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I only lasted about 9 months on Humira and it did not help my fistulas. Others have had better luck. You may want to check out the Humira sub forum. Good luck!
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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
12-11-2013, 07:28 PM   #371
nogutsnoglory
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Curious to know if others with setons feel a big bump where it is? I hope it's my seton and not an absecess. It bleeds if I touch it.
12-11-2013, 11:21 PM   #372
Essieluv
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Curious to know if others with setons feel a big bump where it is? I hope it's my seton and not an absecess. It bleeds if I touch it.
My seton was like this. I was told by my CRS that it was normal...just watch it and keep up on the sitz baths, but you know the drill. I hope it's nothing!
12-12-2013, 11:29 AM   #373
exit4
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Humira helped to close my fistula and kept me symptoms free for 3 years!
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Life is not about waiting for the storm to pass, it’s about learning how to dance in the rain.
12-12-2013, 03:45 PM   #374
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exit 4, i just started with Humira today (was previously on Remicade) and am glad to read about your success with Humira.

If you do not mind, can you tell me how long did it take for the fistula to close after being on Humira. Also, are you continuing to take Humira even after the fistula is healed? I am aware the healing time and process can vary but was just curious.
12-12-2013, 03:54 PM   #375
mel.k
 
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My fistula come about after proctectomy a week after surgery. It was coming from my wound where rectum was into vagina had it removed and still recovering that was almost 5 weeks ago. Was my 1st and I pray to god the last. My surgery for ileostomy was much easier to get over than the proctectomy
12-13-2013, 02:35 AM   #376
exit4
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It took me about 1 month to start healing on Humira. I had other complications that prevented my total healing – I had a fistulatomy while in a flare that left me with a “key whole deformity”. I kept taking Humira for almost 3 years and did very well on it – no dria, urgency, cramps, blood. The only side effect I had was hives during hottest days of summer if I was outside prolong time. Unfortunately, I developed anti body to Humira after 3 years, Humira stopped working and I developed another fistula.
I am now on methotrexate injections for about 2 month’s – fistula did close, but it’s not working as good as Humira was – I am back on prednisone for dria and urgency.
12-18-2013, 01:41 AM   #377
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Hi all,

Haven't been on this site in a while, but I need some support. Have had seton drain for about a year and a half, and doctor is going to surgically implant a plug where the abscess is. anyone have experience with plugs? doc says its made of collagen and will heal alongside the rest of the skin.

for now, the pain, embarrassment, and leakage from this abscess is ruining my life. what a hell.
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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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12-18-2013, 09:44 AM   #378
ronroush7
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I don't know the answer to your question but hang in there. I once had an abscess that bled for three months.
12-18-2013, 10:13 AM   #379
lgpcarter
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Try searching the forum for "plug." There aren't many with them, but you will find a few threads.
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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 4 weeks, Imuran 50 mg, Flagyl and Cipro 500 mg twice a day
Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
12-19-2013, 01:46 PM   #380
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I had my seton removed but my fistula has still not closed. : (

I'm so over this thing. I just hit my one year anniversary of it happening and I really had hope it would be gone by now. I too am considering the plug... Trying to figure out the best timing to try and go for it. My biggest concern is if it fails will I have to start over at square one. I hated the seton and really don't want to have to need one again!


HD
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- myriahdawn: 32/female

Crohn's: Diagnosed 4/2011 (Ileum & Colon)
Med: Humira
Vitamins: fish oil, vitamin D, B12 & a multi-vitamin
Surgeries: 2012-2013: Ano-rectal fistula repair & repair again & etc.... 7/10/14 - got a plug/flap combo!!!
12-19-2013, 02:14 PM   #381
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Count me in. I am still not officially diagnosed, and am new to the group. Though I don't think I have any fistulas yet, thank Heaven, I deal with abscesses every time I have a bad flare. They appear in the groin and labia area, around the anus and sometimes in the arm pit and other areas. The worst ones are the ones in the anal area... Sometimes they get so bad I have problems moving. And trying to deal with constant diarrhea is bad enough without it being impossible to clean yourself afterwards without crying... TMI, I know. But I feel like half this site is TMI, and if I cannot get it out here, well where can I?

I currently have one on my inner thigh, up high, close to the labia. It is pretty angry... And I feel like I am walking funny out of pain.

To the ladies and gents who are dealing with fistulas, I truly feel for you. I know these are far worse than anything I have had to deal with yet. And I cannot imagine the pain you are going through! My heart goes out to you! Evil things, they are.
12-19-2013, 02:53 PM   #382
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My doc said that oftentimes seton drains are kept in for the rest of one's life.... anyone have a seton in place for longer than 3 years?
12-19-2013, 03:10 PM   #383
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I had my seton removed but my fistula has still not closed. : (

I'm so over this thing. I just hit my one year anniversary of it happening and I really had hope it would be gone by now. I too am considering the plug... Trying to figure out the best timing to try and go for it. My biggest concern is if it fails will I have to start over at square one. I hated the seton and really don't want to have to need one again!


HD
Was your seton removed via surgery? My CRS said that if the fistula closes, the seton can be removed without surgery. Has anyone heard this? It gave me some hope that if Humira closes my fistulas, I can avoid having more surgery.
12-19-2013, 11:42 PM   #384
exit4
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I had a plug put in about 3 years ego - did not work for me, got infected then abccessed. Was put on IV antibiotics, got c diff...What helped me to close my fistula was Humira.
Good Luck 2 u!
12-20-2013, 01:02 AM   #385
smack116
 
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I had a plug put in about 3 years ego - did not work for me, got infected then abccessed. Was put on IV antibiotics, got c diff...What helped me to close my fistula was Humira.
Good Luck 2 u!
Do you know what kind of plug it was? I hear there are two types of materials used
12-20-2013, 01:30 AM   #386
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I battled a fistula for about 2 years. Had numerous setons placed.Had the fistula plug, did not work for me. I am a liver transplant recipient, and that make me unable to use humira. I finally had a fistulotomy. This was in October. Ive had no problems since. Seems to have worked and had no complications from it.
12-20-2013, 05:35 AM   #387
DamnitCrohns
 
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Turns out i have a fistula to my bladder! I've peed out poop and I have E Coli bacteria in my pee O.o

Gonna need to have an MRI or something to confirm - does anyone know what happens after that? is it a surgical procedure? if so, please could you guys give me some info on it? like how it's done, and recovery time etc?
12-21-2013, 05:44 PM   #388
bri850
 
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Hi all,

I'm going cross eyed trying to get info on cutting Seton's. Hopefully (fingers crossed).

My fistula was just a pinhole in size. Leftovers from a very large and painful anal abscess.

I've started posting on forums for a little advice.

My fistula was too close to the sphincter to do a fistulotomy and a cutting Seton was put in place Dec 3rd. Everything was going fine, then 4 days ago I became super fatigued. I just can't stay awake. I didn't over do it after the surgery but I was active, alert and on a regular schedule. There is some itching around my rectum and very minor pain. The drainage is the same as it was, no blood or color change (it's always been yellowish to darker greenish brown). I would think infection but I haven't had any temperature.

Anyway, I'm scheduled to go back to work Monday. My Seton hasn't been tightened yet. I'm a bit worried when it does get tightened. I work a laborious job, lots of bending, squatting, a lot of in and out of a vehicle. I'm worried that the Seton could unintentionally cut quicker while doing my daily work tasks (my job doesn't have any light duty). Should this be a concern? Does anyone have any advice on recovery time between tightening?

I'm glad to be part of this group. I may not have Crohn's but I do have diverticulitis, I had one rupture (almost killed me), I had Ileostomy/Colostomy bag for 6 months. I'd be glad to help anyone with my experiences with those things.
12-26-2013, 09:55 PM   #389
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New to this group. Dx Crohn's November 2012. Thought I had stomach flu. Was seen at a local clinic and that doc advised I get to the ER immediately. I was in my first of many major flares. Had small bowel resection surgery in August 2013. 1 month after surgery, I had a perianal abscess that required drainage. At the op follow up, my GI surgeon checked me out and said I have a fistula in the same spot as the abscess or what he calls a transmission source. Doc will not operate due to the fistula location and is hoping the Remicade will help close it. So far no luck as I still have drainage from the fistula. Pain level is still high. Just feel like I'm in limbo right now. I guess it could be worse.
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Crohn's DX October 2012. Ileum and small bowel resection August 2013. On Remicade, Methotrexate, Percocet, Lipitor, Insulin (type 2 diabetes), Metformin, Hypertension meds.
12-26-2013, 10:39 PM   #390
ronroush7
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Welcome to the group. Hope you feel better soon!
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