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07-02-2014, 08:43 PM   #601
aloe
 
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My experience was exactly like Jay's. I forgot to mention sitz baths. They really helped the pain.

I understand it seems like a no-win situation, but I don't know what better choice there is with fistulas.

Wishing you good luck with the procedure Sue!
07-04-2014, 11:29 AM   #602
lgpcarter
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I use large gauze pads from Target along with a pad and two panty liners to catch my drainage. I have found that Cipro and Flagyl do help slow the drainage. I am on Cipro only now as Flagyl makes me feel awful.

Simponi helped considerably with my perianal disease but couldn't quite get me into remission, so I stopped it. I didn't actually realize how much it was helping the fistulas until I stopped.

Going to be starting Stelara as soon as I make an appointment with the home care nurse.

In terms of saving money, I know some people order cases of gauze off Amazon or eBay and that is much cheaper. I really like the Target store-brand gauze and the pads work out to be about $0.20 each.


I had 2 setons placed and they are getting to be exhausting. I must constantly change the dressing due to leakage/drainage and I am spending a fortune on gauze and tape. Does anyone have any guidance on how to limit the amount of drainage that comes out of the open wounds where the setons are placed? Any advice would be GREATLY appreciated!!

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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
07-04-2014, 11:33 AM   #603
lgpcarter
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I had some removed when they did my setons and fistulotomy in December. It was fine. I think the worst part of the recovery was the fistuolotmy, but hard to tell, really. They have started to come back though.

I recommend a peri bottle to squirt area clean after a bowel movement rather than wiping and also frequent sitz baths.

Has anyone had a positive experience getting a anal skin tag removed?? I am supposed to have it done tomorrow.
07-04-2014, 07:33 PM   #604
Flarkie
 
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Are there Amy people with Crohns disease, peri-anal fistula tracts and abces who underwent:

Resection lower part colon-upper part colon beeing attacked to the rectum as a "organic pouch". And to fill up the abces a gracillus flap?

Please let me know experiences and etc!

I a, very sick have had over 50 Operations, colonstoma, seton drain, 4x dosis infliximab, super high dosis antibiotics and nothing works. The pain is horrible...
07-09-2014, 08:20 PM   #605
Harper05
 
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Hi all... Had a perianal abscess drained 3 months ago... Went to doc today said fistula is forming and I should get it drained... Does this ever end?.? Also getting colonoscopy before the surgery"....ugh! What's the healing time compared to the draining abscess,surgery? It was a very small abscess.
07-10-2014, 04:38 PM   #606
dave13
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I have surgery tomorrow afternoon.Fistulotomy and setons.I have five surrounding my rectum,I am told.So,tomorrow will be a busy day!
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07-10-2014, 05:10 PM   #607
Flarkie
 
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I have surgery tomorrow afternoon.Fistulotomy and setons.I have five surrounding my rectum,I am told.So,tomorrow will be a busy day!
I have mailde them no answer yet...
07-10-2014, 09:01 PM   #608
Jay Woodman
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Hi all... Had a perianal abscess drained 3 months ago... Went to doc today said fistula is forming and I should get it drained... Does this ever end?.? Also getting colonoscopy before the surgery"....ugh! What's the healing time compared to the draining abscess,surgery? It was a very small abscess.
Do you mean that the surgeon is placing a draining seton in the fistula?
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Perianal Crohn's
Curcumin
Garlic
Grape Seed Extract
Vitamin C
Vitamin D - 5000 IU Daily
Omega 3 - 2 teaspoons NutraSea daily
Methotrexate
Remicade (+Hydrocortisone)
07-10-2014, 09:03 PM   #609
Jay Woodman
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I have surgery tomorrow afternoon.Fistulotomy and setons.I have five surrounding my rectum,I am told.So,tomorrow will be a busy day!
Good Luck with your surgery! Let us know how you are doing : )
07-10-2014, 10:17 PM   #610
Suehelb
 
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Not sure how to reply to just one person but... Good luck tomorrow Dave13! My surgery went well today...I believe. I had only 1 seton put in. Phew...considering I was thinking three. The 3 hour trip home was tolerable likely due to pain meds. Instead of putting me to sleep, they make me feel like a boost of caffeine. Wish I would sleep instead.

Dreading my first bm. But overall, I would have to say I'm doing well. Calm before the storm??

Thanks for all the tips and thoughts.

Sue
07-11-2014, 06:51 AM   #611
dave13
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I'm getting ready to go to the hospital soon.I'll post how everything went,all new to me.I like new experiences,but this...or should I say butt this is not one of them.
07-11-2014, 10:53 PM   #612
Suehelb
 
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Day one at home has been good. No pain meds and pooping is fine other than no wiping. I squirt the area with water bottle, spray with shower head then sit in tub. Seems a bit much but I think she cut out a large area next to seton. It's about as big as a finger print. How is that sucker going to stay clean and heal? Anyone else experience an open wound in their peri area?
07-11-2014, 11:04 PM   #613
aloe
 
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Yay Sue! So glad you're doing well.
I haven't experienced that exact thing, but I've been using one of these ever since getting a fistula: http://www.amazon.com/TOTO-Travel-Ha...s=toto+washlet
I was going through the whole shower, squirt rigamarole, and can't recommend this more highly. I'm hoping to get the toilet seat model someday...when I'm more flush (ha ha! sorry, terrible pun)
07-11-2014, 11:08 PM   #614
Suehelb
 
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That looks awesome! AND they will even gift wrap it for me! Tee! Thanks for the tip! Maybe something I can carry with me? To work?
07-12-2014, 05:30 AM   #615
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Hi Sue,
My 12 year old son has had a large chunk cut out of the peri area, we had to go back to the hospital each day to have the packing and dressing changed. it was then cut to every two then three days. The area had to be kept clean and dry. Very difficult in that area. His was quiet large about the size of a golf ball that they removed and it took about 3 months to heal. Even with all the pain he went through if you asked him he would say the worst part was getting the sticky top bandage off every day. But he did get through it and is all healed now. He then had to have 2 draining setons put in which he managed with. They have now both fallen out and so it is back in about a week to have them put back in.
Hope yours all goes well. Maybe some day someone will come up with a better solution.

James mum.
07-12-2014, 10:39 AM   #616
myriahdawn
 
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I have had my fistula for over a year and finally got a flap/plug combo. It's only day 3 but I am feeling very good about things!
__________________
- 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!!!
07-12-2014, 11:52 AM   #617
aloe
 
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That looks awesome! AND they will even gift wrap it for me! Tee! Thanks for the tip! Maybe something I can carry with me? To work?
Yes, it's perfect for mobile use. I carry mine in my purse, and actually got a second one after about a year so I could keep one in the bathroom and one in my purse. The only thing is you kind of need a bathroom where you have access to a sink in private, not the kind where you're in a stall and the sink is out where everyone else is. I find it usually takes two fill-ups and I still need to use a wet wipe gently afterwards just to make sure I'm completely clean.

This is the first I've heard of a flap/plug combo. I'm a little afraid to ask, but what is that? Is it more permanent than a seton?
07-12-2014, 12:26 PM   #618
Suehelb
 
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James mum...I'm so sorry your 12 year old son has had to go through this mess. I'm praying this disease avoids my children. Right now my hole is open. No gauze or packing. Not sure that is good or bad. I can only imagine the packing... Did he miss a lot of school? I'm not sure how I will deal with this at work? I teach kindergarten. Pretty lively job with little bathroom time. How do you deal with that? Today I packed my purse with some water bottles and hoped I wouldn't need to poop. I made it until I got home. Phew!

Aloe..can you explain more why I would need a private sink for that gadget? Is that to fill it! Can I fill at home? How many of you own a sitz bath toilet thing and do you use Epsom salt in your sitz baths?

I so appreciate everyone's help and advice!

Thanks!

Sue
07-12-2014, 12:39 PM   #619
aloe
 
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James mum...I'm so sorry your 12 year old son has had to go through this mess. I'm praying this disease avoids my children. Right now my hole is open. No gauze or packing. Not sure that is good or bad. I can only imagine the packing... Did he miss a lot of school? I'm not sure how I will deal with this at work? I teach kindergarten. Pretty lively job with little bathroom time. How do you deal with that? Today I packed my purse with some water bottles and hoped I wouldn't need to poop. I made it until I got home. Phew!

Aloe..can you explain more why I would need a private sink for that gadget? Is that to fill it! Can I fill at home? How many of you own a sitz bath toilet thing and do you use Epsom salt in your sitz baths?

I so appreciate everyone's help and advice!

Thanks!

Sue
You need a sink just to fill it up. You could fill it up at home and carry it with you that way, but it folds down into a smaller size when it's empty. I usually carry it with me empty, and then slide it open and fill up the tank at the sink right when I'm going to the bathroom. If you don't mind carrying the extra weight and have the room to carry it full which would make it twice as big, you could definitely fill it up at home (it's still not huge, and would easily fit in a tote bag that way). Also, it's nice to fill it up with warm water, but not necessary.
07-12-2014, 10:23 PM   #620
dave13
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I checked out the link that you provided aloe.It seems quite handy.

I ended up with five setons from yesterdays surgery.I felt pretty good today as far as pain and discomfort go.It was more discomfort than pain.I have to call Monday morning to talk with the surgeon and find out more.

I used a mirror to see what it all looked like,h,m,m,m,..I suppose interesting is a polite word to use.

Suehelb-one of the five is fairly big and open.I guess that is where the regular sitz/showers and antibiotics come in.Lets hope so.Hope you do well.

Figuring out the best way to apply a panty liner to my underwear was not something I thought I would ever have to do
07-12-2014, 11:04 PM   #621
Jay Woodman
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This Danish Medical Bulletin provides an informative article for those seeking more information on fistulizing Crohn's. I have posted the link hoping it may be of help to others.

Diagnosis and treatment
of fistulising Crohn’s disease


http://www.danmedj.dk/portal/pls/por...me=8050864.PDF
07-12-2014, 11:18 PM   #622
Suehelb
 
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Dave13,

Hope you are doing well this evening. Right now I've been folding over 4x4 inch gauze and putting in my crack to catch the drainage. I also have on a panting liner but doesn't seem to be needed much. Oh the things one goes through...seriously?! I find myself in moments of self pity and then embarrassed that there are so many with more challenges than I or are younger .... I can't imagine my children having to though some of what I have read.

My open area is just open. Seems odd to me. I also am on flagyl but the surgeon said I could stop. Decided I am at least going to finish the prescription. All my docts have different ideas...sorta. My seton surgeon doesn't like flagyl, the surgeon who drained my abscess does. Who knows.

Is this the first time you've had setons? Hope you heal quickly!

Sue
07-12-2014, 11:27 PM   #623
missybee
 
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I just had two setons placed in four days ago, really struggling with the aches and pains still. This group is perfect for me as although i have had Crohn's for over 20 years this is the first time i have had problems with abscesses. I was really worried about the huge hole after the setons but seems that this may be normal? I also dont know how to reply to only one post as i am new to this but thanks aloe also for the link, i am meant to be going away in 4 weeks if the aches and pains subside so this will be perfect.
07-12-2014, 11:57 PM   #624
aloe
 
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You're all most welcome! I don't know what I would do without that thing, so I couldn't recommend it more highly.

I'm so sorry Dave that you're having to use panty liners. I certainly never imagined it would be more than a once a month thing. It's a little more challenging in men's boxers.

I'm not sure about the open areas, but I think that's probably for the best. When my abscess was first drained and before I had the seton, they were really concerned it would close up, so I had to have the packing. The packing changes were the worst! I ended up being given Xanax and Vicodin to be taken beforehand just to get through it. Felt like an idiot, but it was horrible.
07-13-2014, 12:56 AM   #625
Makena's Mom
 
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Aloha Everyone!

Today marks one year since my daughter came to me with concern about the LARGE bump she had on her bottom, which after months of appts and countless "second" opinions, turned out to be a fistula. It was opened and drained last November and she was diagnosed with severe fistualizing Crohn's in December. It's been 8 months since her fistulotomy and it is finally on the home stretch of being fully healed. All I have to say is, Thank God for Remicade. She has made TREMENDOUS improvements on this treatment and I'm so thankful that she's healing. She's been through more pain at 10 years old than I could ever imagine. I would like to send my thoughts and prayers to all of you out there who have had to endure this kind of pain. I can't imagine what it would be like. You guys are my superheroes
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Becky, mom to Makena - 10 years old

Dx with severe Fistulizing Crohn's in December 2013

Remicade Dec 2013 - Present: 10mg every 4 weeks
Multivitamins, Probiotics
Fistulotomy November 2013

Developed Fistula June 2013
07-13-2014, 01:49 AM   #626
james's mum
 
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Hi Suehelb,
Yes from the time we found out which was about the last term of year 5 for him and up to the second term of year 6 he missed quiet a bit of school. He found it good to take a cushion to sit on at school but after the 3 -4 months when it finally healed he didn't use it much then. He manages quiet well with the 2 setons only thing is there are some days he comes home and can hardly walk due to the chaffing, but have found a good salt bath and some nappy barrier cream works great for this.

James mum
07-13-2014, 03:18 AM   #627
Sazzle
 
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Hi all
First of all, a huge thanks to this wonderful site and forum! I've written on a couple of other threads, but I'm guessing this is the thread for me.
I had an internal perineal abscess form and had an MRI scan which showed I also had a fistula. When the abscess was "ripe" enough they took me in for drainage and fistula removal.
When I came round they said they hadn't dealt with the fistula and my consultant will talk to me about it when I have an outpatients appointment ( July 24th ) the abscess was huge and left a gaping hole which I'm still having packed daily ( op was 4 weeks ago )
I'm so confused... ..... I've read on my district nurse notes that the fistula is a transsphincteric fistula - I asked my doctor about it and he said the result after having an op on the fistula would be anything from a seton to a stoma bag, only the surgeon/consultant will know .......he also said it could involve a few operations more than one....everything is different for different people, I know that, but I'm so confused and impatient to know what the future holds.
They have ruled out Crohns, they think the cause may be years and years of constipation, but havnt really looked into it as yet...
I just don't know what the future holds.
XX
__________________
Perennial Abscess diagnosed April 2014
MRI in June 2014 - Transphincteric Fistula aswell as the Abscess.
June 18th 2014 - Abscess removed under general anaesthetic .Wound packed and dressed daily for 8 weeks.
September 18th 2014 - Fistula "laid open" under general anaesthetic - wound packed and dressed daily for 6 weeks.
November 16th 2014 - As above.
April 28th 2015 - Seton placed under general anaesthetic . Leaking everything at present. Itchy. Sore.
07-13-2014, 05:20 AM   #628
Flarkie
 
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Hi all
First of all, a huge thanks to this wonderful site and forum! I've written on a couple of other threads, but I'm guessing this is the thread for me.
I had an internal perineal abscess form and had an MRI scan which showed I also had a fistula. When the abscess was "ripe" enough they took me in for drainage and fistula removal.
When I came round they said they hadn't dealt with the fistula and my consultant will talk to me about it when I have an outpatients appointment ( July 24th ) the abscess was huge and left a gaping hole which I'm still having packed daily ( op was 4 weeks ago )
I'm so confused... ..... I've read on my district nurse notes that the fistula is a transsphincteric fistula - I asked my doctor about it and he said the result after having an op on the fistula would be anything from a seton to a stoma bag, only the surgeon/consultant will know .......he also said it could involve a few operations more than one....everything is different for different people, I know that, but I'm so confused and impatient to know what the future holds.
They have ruled out Crohns, they think the cause may be years and years of constipation, but havnt really looked into it as yet...
I just don't know what the future holds.
XX
Its a positive thing that you arent diagnosed with Crohns. Your chances for healing are much better when you dont have Crohns. So important for good healing is to get rid of the infection. They will fight the infection with good drainage (woundtreatment/packing, cleaning of the wound, seton, etc) and antibiotics. So when the infection is gone the abscess needs to grow from the inside out. This is inportant to prevent any new abscesses or fistulas. When the abscess healed they can see what the best method is to get rid of the fistula. This will be done either with medications or surgery. Afcourse you never know what will happen, but keep the spirit up you are not alone!
07-13-2014, 06:21 AM   #629
dave13
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Dave13,
Is this the first time you've had setons? Hope you heal quickly!
Sue
Yeah,this is my first experience with setons and perianal crohns.Previously I had a resection(upper jejunum) from a blockage,last November.The Monday before Thanksgiving!

I hope you heal quickly too...and everyone else as well!!! I am happy to have found this support group.

I am happy for removable shower heads,makes the at home cleanings easier.I count my blessings where I find them!


Sazzle-It's good your fistula are not from crohns..It is scary not knowing what the future holds,we can imagine dire scenarios when left to our own thoughts.Don't let your nerves get the better of you waiting for your next appointment.Visit us here to let out some of the 'hurry up and wait' anxiety.
07-13-2014, 08:45 AM   #630
Suehelb
 
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Sazzle...hang in there. I agree with Dave. Be patient and heal.

Shower heads work perfect and wish the were portable for my hotel weekend coming up. Hoping I can go.

James mum...if your son can bring a pillow to school...by God I sure can bring one with me. He must be a strong young man. Toots to him for doing what you have to do!

Makenas mom...I can't imagine having my daughter struggle with this. I am so happy to hear remicade is working for her. I believe that is my next step.

When I was diagnosed in 1997 I had no idea what this disease was capable of. I have been so naive while it's been in remission for 13 years.

Thanks everyone for all of your support and info. It's so nice to have this group to go to.

Have a great day!

Sue
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