Fistulas, Fissures and Abscesses Support Group

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Good luck!!! I totally feel for ya it does get better once they figure out a plan. I forgot to mention that they put me on antibiotics a Cipro/Metronidazole combo worked well to get it under control before the seton placement.
 
Hi All,
I am new to these forums. I was diagnosed with ulcerative colitis in 2004. I was bleeding cupfuls of blood when I went to the restroom for months, but my doctor was not able to help. I got so bad that I could no longer walk and my mom had to rush me to the ER. They left me in ICU for over a week before they realized they needed to do emergency surgery. They ended up doing a total colectomy with an ileostomy bag and j pouch. They said my large intestine was shredded into pieces from severe ulcerative colitis. There were complications from the first surgery, which led to my small intestine twisting and developing gangrene. Another surgeon performed surgery a week later to repair the damage. Then 6 months later they did the reconnection surgery and 2 months after that they removed the ileostomy bag.

Then 10 years later (2014), I was diagnosed with fissures and then a perianal abscess. My colorectal surgeon drained the abscess and did a fistulotomy with a seton on 5/15/14. I had to have it re-drained and cauterized 4 days later. Then on 6/25/14 they re-drained it again and added a 2nd seton. Then on 7/17/14 they tried a malecot drain, which was inserted in the office because I couldn't be put under since I stopped my blood thinner injections and was back on Coumadin. The malecot drain being put in was excruciating. My mom could hear me screaming and yelling from the waiting room it was so bad. I wouldn't wish one on anyone. Then on 9/17/14 the malecot drain was removed since it wasn't helping. On 10/2/14 they re-drained the abscess and added a 3rd seton. I have been doing horribly. I cannot sit, walk, or lay down without pain. I have seen my surgeon NUMEROUS times and he said it has to heal from the inside out. At my last appointment he said he will check on me again in a year, which means I am stuck with the setons at least another year or two.

I have been reading a lot of comments mentioning medications to close up a fistula. Do they help? I love my surgeon, but I am looking to find a second opinion. I would appreciate any information about the medications, so I can bring them up at my appointment. Thank you so much!
 
@akk0309: So sorry to hear about your medical issues. I can only imagine how much resilience, strength, and patience it takes to handle them all along. I am not sure if biologics such as Humira/Remicade were considered or are appropriate in your case based on your medical history. They do give you a fair chance of closing the fistula although the healing time and efficiency can vary. They tend to ease the symptoms and inflammation even if they cannot completely heal the fistula.

I know setons can be a pain until you get used to them. But as long as they are draining, they should help with preventing future abscesses and infections and the pain will and should subside as time passes by. Good luck and wish you the best.
 
Joining again after sometime away, finally threw my hands up and trying to get some control of this disease. :dance: Have had too many surgeries to count and now looking forward to another next week at UCSF, to drain one of many fistulas. Trying to get approved for Stelara is the hardest thing in the world if you don't have severe psoriasis...:ylol2:been denied 2x's and wondering if anyone has been approved that does not have psoriasis and if so, how did you go about doing this?
 
Hi people , glad to find you , diagnosed 6 months ago when a recto vaginal fistula was found when I haemmoraged , had blood transfusion, tried 6 mp , and azathiripine and prednisolone , made me really Ill, had anaphylaxis on fourth remicade infusion , so that's been stopped , what to do ? Symptoms still bad , daily ,very fed up , any advice ?.
 
Diver jude said:
Hi people , glad to find you , diagnosed 6 months ago when a recto vaginal fistula was found when I haemmoraged , had blood transfusion, tried 6 mp , and azathiripine and prednisolone , made me really Ill, had anaphylaxis on fourth remicade infusion , so that's been stopped , what to do ? Symptoms still bad , daily ,very fed up , any advice ?.
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Humira may work. Didn't for my fistula, but everyone is different. Worth a shot.
 
Diver Jude, I'm currently just finished my Remicade #6 in combo with weekly Methotrexate. Progress for my perianal fistulas healing has been slow. But between Infusion#5 & #6 it appears there may be some marked improvement in drainage easing significantly.
 
Akk0309, I'm on the antiTNF-Remicade which I take in combination with weekly Methotreaxte for treatment with my Perianal Fistulas. Progress has been very slow.
 
@Idlebrain & @Jay Woodman: Thank you both so much! I will ask about Humira, Remicade, and Methotreaxte. I will try anything at this point. I am glad I found this forum. I am really struggling holding on and have no one to talk to that understands what I am going through. I have just been praying a lot.

I also had 3 lung surgeries last year as well. Then I was cut all the way open in February of this year by 4 surgeons to remove 3 ruptured ovarian cysts, scar tissue, and to check on my j pouch. In April, I just found out I have another ruptured ovarian cyst and my doctor just wants to wait it out and hope it goes away. I think I need new doctors across the board. Surgeons are reluctant to operate on me though because I have 2 blood clotting disorders and I have had 4 blood clots since I was 15. The last clot was in November, which they performed surgery on. I hope those medications will not interfere with my blood thinner. I am going to look it up right now. Thank you again! I truly appreciate it. I wish the best for both of you and hope you have speedy recoveries. God bless.
 
Hi fellow fistulars , has anyone has a recto vaginal fistula,surgically repaired and if so what did it entail ? :ycool::ycool:
 
Having a tough couple weeks. It's been a year since Dx. (many symptoms 2 years prior) Went in for a colonoscopy about 3 weeks ago . My 4th so not worried about it I vomited while under and aspirated bile into my left lung. Pnuemonia almost instantly. Did a follow up with my GP She shocks me by saying I'm glad you're alive!

Results of the scope was TI was almost completely closed from scarring GI could not get the camera through. So do a MRI last week. Most uncaring staff I've ever had. I did it early in the am. Staff was very uncaring. First patient was late so they were rushing. Tech misapplied the chest strap so that cost some time. Tech removing the needle for contrast doesn't press down firmly while applying bandage. I bleed over my clothes getting dressed

The nurse called me with reults from the MRI. Fistula (above the TI I believe)

So last three days have been constant tiredness and 12-15 bathroom trips per day. I went through a roll of toilet paper ea day. My bum is sore. Small amounts of loose stool.
But constant every half hour or so

I have a 3 hour drive tomorrow am that is going to be bad. I will likely have to shower before I go into work

I'm new to fistula. Does that sound like TI or fistula? Not that it matters I guess.

My GI is referring me to a surgeon. I think I will get that ASAP///sigh
 
scrapr said:
Having a tough couple weeks. It's been a year since Dx. (many symptoms 2 years prior) Went in for a colonoscopy about 3 weeks ago . My 4th so not worried about it I vomited while under and aspirated bile into my left lung. Pnuemonia almost instantly. Did a follow up with my GP She shocks me by saying I'm glad you're alive!

Results of the scope was TI was almost completely closed from scarring GI could not get the camera through. So do a MRI last week. Most uncaring staff I've ever had. I did it early in the am. Staff was very uncaring. First patient was late so they were rushing. Tech misapplied the chest strap so that cost some time. Tech removing the needle for contrast doesn't press down firmly while applying bandage. I bleed over my clothes getting dressed

The nurse called me with reults from the MRI. Fistula (above the TI I believe)

So last three days have been constant tiredness and 12-15 bathroom trips per day. I went through a roll of toilet paper ea day. My bum is sore. Small amounts of loose stool.
But constant every half hour or so

I have a 3 hour drive tomorrow am that is going to be bad. I will likely have to shower before I go into work

I'm new to fistula. Does that sound like TI or fistula? Not that it matters I guess.

My GI is referring me to a surgeon. I think I will get that ASAP///sigh
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First off, get you some baby butt wipes and some tucks wipes for the D. I had a fistula in my bum. Never had one in my intestines. Just wanted to pass on the butt wipe thing. Hope you get to doing better soon.
 
Has anyone had success with closing an enterocutaneous fistula? Porcine Plug?
Octreotide, stem cells or surgery? I've had one since 2009 and would dearly love to get rid of it:sign0085:

jayann
 
Well guess what? If you actually take your medicine you feel a lot better.

I was out of town and excited to be there. My pills were in the bottom of my bag and I just did not take them. :ybatty: Took Thursday dose about 12:00 midnight. Friday dose this am about 7:00 am. Drive was uneventful. Not very many bathroom trips today. By bum is healing up

I guess the pharms do know what is what

Where is the dope slap emoticon??? (Car Talk reference)
 
scrapr said:
Results of the scope was TI was almost completely closed from scarring GI could not get the camera through. So do a MRI last week. Most uncaring staff I've ever had. I did it early in the am. Staff was very uncaring. First patient was late so they were rushing. Tech misapplied the chest strap so that cost some time. Tech removing the needle for contrast doesn't press down firmly while applying bandage. I bleed over my clothes getting dressed

The nurse called me with reults from the MRI. Fistula (above the TI I believe)

So last three days have been constant tiredness and 12-15 bathroom trips per day. I went through a roll of toilet paper ea day. My bum is sore. Small amounts of loose stool.
But constant every half hour or so

I have a 3 hour drive tomorrow am that is going to be bad. I will likely have to shower before I go into work

I'm new to fistula. Does that sound like TI or fistula? Not that it matters I guess.

My GI is referring me to a surgeon. I think I will get that ASAP///sigh
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Hi scrapr.

Back in 2004 I had my first colonoscopy and my TI was also so inflammed that the GI could not get the scope into my small intestine. (The GI did not even tell me. I found out in 2010 when I went to a new GI and personally retrieved the records from my old GI in order to give them to my current GI!) I also had a fistula similar to yours, connecting from one part of the intestine to another. In 2010 I had surgery on all of it.

The surgery is the best thing I have done in my Crohn's journey. It was a difficult decision at the time, but I am so glad I did it. It is definitely not the end of the world. Good luck scrapr! Let us know how things proceed for you.
 
I took the pic for my avitar one year ago today before a fistulotomy and seton placement. How time flies when your having fun!
 
By the sounds of everything I'm about to go through tough times. :sign0085: I'm about to have a Seton put in for the first time and not really sure what to expect.....
 
imok said:
By the sounds of everything I'm about to go through tough times. :sign0085: I'm about to have a Seton put in for the first time and not really sure what to expect.....
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IMOK, I suggest you search my previous posting which may be of some help to you. I've had a few Setons placed after perianal abscesses were followed by Perianal Fistulas. The Seton is crucial to allowing the Fistula Tract to dry up. OR it has been in my case. I am currently booked for Remicade Infusion#7. Combination Therapy (Seton + Remicade + Methotrexate) works best for me. The Setons in combination with Remicade & Methotrexate have allowed the fistula tracts to heal. The CS or GI will wait several months for the Seton to allow the Fistula Tract to heal & at some point remove the Seton to hopefully allow the medication to enable the tract to close up. I also have experience trying to close a Perianal Fistula without a Seton & only Medication Therapy (Remicade + Methotrexate). One of my Perianal Setons severed shortly after surgery. The Colorectal Surgeon wanted me to wait several months to see if the tract would heal without another Seton placement. It did not....I just recently had another Seton placed & am back to relying on Combination Therapy to heal this remaining fistula tract. It will be several months before we can determine the results of this recent Seton placement. You will probably be a little tentative & tender for the first week after the Seton Placement. But for your own benefit, you will & must adjust. I walk & go the the gym & do circuit weight training & abdominal strengthening : )
Good Luck with your Perianal Fistula healing!
 
Almost embarrassed to ask this question... I've had PA Crohn's for almost 2 years. I currently have a Seton. I use a gauze pad. The odor today is much worse than usual (Not that it is in anyway pleasant at other times). Can this be indicative of infection? Should I contact doctor? I noted a larger amount of blood today as well. I am very sorry to be graphic, but I am sick of going to the doctor and don't want to go if I don't need to. Thanks.
 
Thank you so much Jay this means a lot to me that you have a been and still going through this process and it's more information than I've got from the drs. Thanks for your help and advice on what it's really going to be like. I'm feeling like there is so much support here and I'm glad I found this group.
 
Since April. Had a seton before. They took it out. Fistula tract never closed and I abscessed again.
 
Ey218 :/ I'm sorry to hear that your fistula didn't close. Are there any other way to help you heal?
 
ey218 said:
Almost embarrassed to ask this question... I've had PA Crohn's for almost 2 years. I currently have a Seton. I use a gauze pad. The odor today is much worse than usual (Not that it is in anyway pleasant at other times). Can this be indicative of infection? Should I contact doctor? I noted a larger amount of blood today as well. I am very sorry to be graphic, but I am sick of going to the doctor and don't want to go if I don't need to. Thanks.
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I've had a lot of blood and liquid drain out morrvso over the past few weeks and I went to the doctor and she pushed for the surgery to come sooner as she was worried that the infection could possibly get worse and concerned about it affecting my mental health too. So please contact your doctor, be annoying if you have to and don't let them forget that you are in pain. Hopefully you will have some positive results for recovery next time. [emoji4]
 
Hi Ey218. Not really the support group I wanted to go to, but ointments I've been given are truly not working and I do want to see what suggestions others have.
 
kellehbeans said:
Hi Ey218. Not really the support group I wanted to go to, but ointments I've been given are truly not working and I do want to see what suggestions others have.
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I've been with a fistula for almost 2 years. It won't close. I've abscessed twice now. I have a seton in for now...
 
ey218 said:
I've been with a fistula for almost 2 years. It won't close. I've abscessed twice now. I have a seton in for now...
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Just got my first seton in .... so far very uncomfortable. I'm too scared to go to the toilet is this normal ?
 
imok said:
Just got my first seton in .... so far very uncomfortable. I'm too scared to go to the toilet is this normal ?
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I haven't done much research, but what is a seton? Also, how do you know if you have a fistula?

My inflammation personally is getting worse. I am starting to doubt I even have haemorrhoids, however I do have an appointment tomorrow with my GP for a second opinion on my stomach pain and also the anal pain. The hydrocortisone is definitely not helping, I can still feel the pain even with the local anaesthetic this type has in. I am feeling extremely sick at the moment with heartburn and it does not help as I have been told not to take any of the meds for indigestion. A little scared about tomorrows appointment as I know they probably won't have a look because I'm in so much pain and I know they don't like to if it does hurt. But at the moment, I think I need them to look so they can see how best to treat me and to get horrible of this horrid pain.
 
Hi Everyone,

I'm going to the Mayo Clinic in Rochester, MN to talk to some of the U.S.'s best gastroenterologists and colorectal surgeons. Do you have any burning questions I should ask?

I'm an 11-year perianal fistula sufferer with multiple tracts on both sides of my body. Too many abscesses to count, multiple seton placements, fistulas inside my fistulas. Infections every other month, bleeding all the time, and a constant fear of my next bowel movement. Enough already!

I had a previous visit to the Mayo Clinic a few years ago which you can read about here. http://www.crohnsforum.com/showthread.php?t=44703

Not sure if this visit will be more useful but my fingers are crossed. Let me know if you want me to ask them about any treatments you've heard of or anything about Crohn's/perianal disease in general. Please omit any questions about your specific condition.
 
imok said:
Just got my first seton in .... so far very uncomfortable. I'm too scared to go to the toilet is this normal ?
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A seton is a stitch that is run through the fistula tract to allow drainage. Check out the resources on this site for better explanation.
 
Hi AAron..,

Based on my past experience and struggle with this disease, there is no guaranteed cure in the USA. It is an accepted orthodoxy among CRS that fistula cure is trial and error. Your case seems more complex than mine and one that I think may be an ideal candidate for the surgeon who treated me and cured me. I have documented my story here.

https://fistulapatient2patient.wordpress.com/

Dr. Bhat has treated so many fistula cases that he has seen many complex cases that are unheard of outside of India. I have listed few such complex cases in my blog. Why don't you communicate with Dr. Bhat by Email to discuss your prognosis in his treatment, as you have nothing to lose? One gotcha: Your Crohn's should not be very active.

Please let me know if I can help clarify your doubts.



AaronMSB said:
Hi Everyone,

I'm going to the Mayo Clinic in Rochester, MN to talk to some of the U.S.'s best gastroenterologists and colorectal surgeons. Do you have any burning questions I should ask?

I'm an 11-year perianal fistula sufferer with multiple tracts on both sides of my body. Too many abscesses to count, multiple seton placements, fistulas inside my fistulas. Infections every other month, bleeding all the time, and a constant fear of my next bowel movement. Enough already!

I had a previous visit to the Mayo Clinic a few years ago which you can read about here. http://www.crohnsforum.com/showthread.php?t=44703

Not sure if this visit will be more useful but my fingers are crossed. Let me know if you want me to ask them about any treatments you've heard of or anything about Crohn's/perianal disease in general. Please omit any questions about your specific condition.
Click to expand...
 
Off to the doctors in a few hours, bit worried about the pain I am in and what they are going to do! I know he is going to want to look (as this really is a second opinion for both my cramping and fissures) but I am terrified about how much it is going to hurt, as I am even struggling with using Uniroid-HC ointment. Has anybody had any success with Uniroid, or is it just me that has failed on it?
 
It might hurt, but if you don't let them look at it, you will never get better. When I first went in and he had to examine me (with his finger) it hurt like h*ll and I cried, but it's the only way to see what is going on and to get on the road to recovery
 
Definitely know I'll let him look as I know it won't get resolved otherwise. I just know that even a thin applicator is hurting at the moment, so I am prepared for a few tears, and hopefully no swear words will leave this mouth!

I have a question, does anybody know the differences in proctitis and ulcerative proctitis? I know there's different causes of proctitis, but surely ulcerative has something unique to it?
 
Thank you for he insight. I will see what they have to say here and reach out to Dr. Bhat next week!
AFS said:
Hi AAron..,

Based on my past experience and struggle with this disease, there is no guaranteed cure in the USA. It is an accepted orthodoxy among CRS that fistula cure is trial and error. Your case seems more complex than mine and one that I think may be an ideal candidate for the surgeon who treated me and cured me. I have documented my story here.

https://fistulapatient2patient.wordpress.com/

Dr. Bhat has treated so many fistula cases that he has seen many complex cases that are unheard of outside of India. I have listed few such complex cases in my blog. Why don't you communicate with Dr. Bhat by Email to discuss your prognosis in his treatment, as you have nothing to lose? One gotcha: Your Crohn's should not be very active.

Please let me know if I can help clarify your doubts.
Click to expand...
 
Didn't think this necessarily warranted it's own thread... but I have a question regarding abscesses.

I had a small anal fissure only for a week or so, but I think it's developed into an abscess. This is the first I've had. It's only very small (pea-sized, maybe... petit pois?) at present and not causing much pain except when I go to the loo.

The main problem (apart from the abscess itself) is extremely bad timing. I'm going on holiday in a few days for 10 days. So, I probably won't get to see a doctor until I return.

How long would you say it's safe to leave an abscess? Do you think I could leave it for 2 weeks and see a doctor when I return without much trouble?

I know self-prescribing is probably a bad idea, but in Italy (where I'm going) you can buy antibiotics from the pharmacy without a prescription... just throwing that out there!
 
When I had my fissure, my pea size bump took about 3 months to turn into a grape size bump and abscess. I'm not suggesting you wait as long as I did to get it taken care of but I think you'd be okay on vacation, I'm no doctor tho!
 
How do you cope when your fistula abscesses? And why does it re abscess?
I have had a fistula for over a year (anus to bowel) and it's still very painful. There's no blockage and it drains (mainly blood) daily/every other day depending on bowel movements. The past 4 days it's been extremely painful and swelled- how often do fistulas re-abscess? And how long does it typically last for?
I'm on pentasa and azathioprine but it's not doing much for the fistula, I've been told to ask for remicade.
 
Aaaaand I'm back again.

My C has changed to major D, and now all of my haemorrhoids are inflamed again and multiple more fissures which make it excruciating to go to the toilet. It feels like it is burning! Tried to use some Uniroid ointment, but turns out the nozzle was far too painful to use. :(

3 months have now passed and all they seem to be doing is getting worse or more appearing...
 
Hi. I'm new here but I need fistula support. Was diagnosed with severe Crohn's July 2014 after I found out I was pregnant. Developed 6 anal Fistulas in a short amount of time. Have had two drainage tubes and two setons. Currently only have one cutting seton on one side and another seton that I'll have to have surgery again for on the other. I've had lots of surgeries. Had a c-section and healthy two month premature baby.
I've tried lots of meds but currently am on remicade and 75 mg of 6mp which makes me very sick. Usually throw up almost every time I eat. Last week I had my cutting seton tightened for the first time. Surgeon said it wouldn't hurt but I am in so much pain I can't really sit, bend over or walk which is really hard since I have a ten month old. The pain is unbearable. I take sitz baths and use lidocaine with very little releaf. I guess I need to call my surgeon and tell her but she thinks I need to just deal with my pain since it's only going to get worse. I need help and I don't know what to do. I'm supposed to have it tightened again in a few weeks but this is agony, and I can take a lot of pain so I just don't know what to do. And I'm not sure any of this medication is actually helping. I feel like I don't have any control over my own body or life anymore. I'm sorry for anyone who has to deal with this- the patient themselves and their loved ones. It really sucks. I don't have a positive outlook right now. Sorry. Thanks for listening.
 
How long does this last???
I am 2 years post partum. 6 monthes post partum I had a perianal small abscess then had surgery.. 3 months later I got a fistula.. then surgery. 5 months later I got a chronic fissure. These days I am doing well. Its just that if I don't drink enough water or eat enough veggies ( I eat a lot) then I have hard stool and hurts to go and that area will be itchy for a week or so.. I mean how long does this last?!?
I don't have Crohn's... but I do want to have another baby and don't want any issues!!
 
@harper I do not have crohns either and have a similar issue. Ive had 5 surgeries for fistulas that were originally caused by constipation. The last one being July 2014. I am currently 7 months pregnant and opting for a c-section due to still having irritation down there after some of my BM. So far, with being pregnant I have made sure to drink enough, eat prunes if I have to, ect, ect so that I will not have any more complications in that area. BUT something that REALLY does help me with irritation is 3x3 gauze pads. I fold one and put it between my cheeks after every BM (which is daily) and replace every time I use the wash room. WIthout doing this I have extreme irritation. The gauze has been a life saver. As far as how long does this last… Ive kind of come to terms that I will prob have to live like this and do this forever. Which sucks, but Im healthy and thankful. I purchase the gauze from ebay in lots of 5,000 at a time for like $15 which lasts me a few months. Not too bad in the grand scheme of things. :)
 
I have had Crohns for 15 years and just developed my first fistula. My doctor said a seton is the only solution, but I'm terrified!! I don't understand a lot about the procedure and the doctor has not returned my call. I am worried about intimacy and how obvious the setons are. I'm in a fairly new relationship and am not sure what to expect
 
Once you get used to the seton you will be fine. But it's def something you need to talk to your partner about as you might have to adjust positions to be comfortable. I was always self conscious about them but my husband was amazing at making me feel okay
 
Hi hingrim what meds are you on or have been on.
Is it perianal or recto vaginal? The latter I suspect but not everyone has the same intimate desires.
Sometimes an aggressive med approach can heal the fistula.
Which is also often the case even with the seton
 
It is a recto vaginal fistula, but when he was explaining it to me he described the seton area would not be vaginal. I have been on Entivyo since December last year. I am having blood work tomorrow to be cleared for combination therapy with Imuran
 
@Harper, If you feel that you have reached the end of the road in treating it here in USA, and if you can spare about 4 months to go to India, you can obtain complete remission just like I did. Please read my story here. I am happy to answer any questions. This disease need not rule our lives.
 
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Combo therapy is good and if that is not enough you can increase the ENTYVIO to every four weekS. That did the trick for me. The fistula closed and after several months had the seton removed, that was about 2weeks ago. So far so good.
Also took antibiotics to keep the abscessng at bay.
I have had FIstulas many times before and the old fistula tracks would still get infected and abscess. If this is your first you probably won't have that problem.
 
How long does it take for fistula to close?i "looked" and it looks like the skin is still open.... It's been a year post surgery!
 
Sending support to everyone with a fistula. I'm new here as well. I've commented on other threads, but I've a perianal fistula with a seton in situ, and currently trying to decide whether to have a LIFT procedure to try to fix, or wait and see if medical treatment works. On Humira fortnightly since March.

@MamaBearBec: sounds like you have been through a lot recently. I'm sorry. Congratulations on your baby though! :) Honestly, a cutting seton sounds horrible to me. No-one ever suggested I try that for mine, but if they had I think I would have told them where to put it. Do you have to have the cutting seton if it is so painful, or are there other options you could try? How did you deal with the other 4 fistulae, and what kind of surgery is planned on the other one?

If I were in your position, I think I would speak to my surgeon and GI about the different options, both surgically and medically. Throwing up after every meal can't be very helpful for getting better as you need to get some nutrition into you. If you can't change to any other drugs (you say you've already been through a few), could they prescribe an anti-sickness drug?

Remember you always have the option ultimately to change your medical and surgical team if you are not getting on with them, and it can be helpful to get a second opinion - though it can also throw up other options that can be a bit bewildering.

@hingram: sorry you are going through this right now. I have commented on another thread (you've probably seen) re intimacy with a seton. I also was in a very new relationship when I had to get the seton, and my boyfriend has been fantastically supportive. I've had two different setons, i.e. it was changed in July. The first was a silolastic seton - it was blue and about 1mm thick, like a small elastic band. It was tied very close to my skin so there wasn't much of a loop. The second is tied much looser so there is more of a loop externally. It is thinner and more like a thread than an elastic band, and is dark green. I did ask if I could choose the colour but so far they've only come in surgical blue or green :yrolleyes:

Hopefully this is helping and not making you feel more scared! It really doesn't get in the way of sex physically, but it takes a bit of getting used to in your head. Now it doesn't bother me so much.

Like you I was really scared and unsure of what to expect before getting the seton. I saw at least 3 different surgeons and asked loads of questions. My problem was that until January this year, I didn't actually have a fistula, just a sinus with no external opening that gave minimal symptoms and drained out my bum - but they wanted me to have a seton, hence forming a fistula. In January it formed a big abscess though and found it's own way out, so I didn't have much choice in the end, it needed to be drained.

this has turned into a really long post! Happy to answer any questions or offer support in any way I can. Feel free to PM me if preferred :)
 
RobRich - It is encouraging to know that combination therapy worked for you. I asked my doctor about going to Entyvio every 6 weeks (right now I am doing it every 8 weeks) and he said he researched it and did not see where that was being done yet. However, I know I have read it on the forums.

Thank you Kat for your response. I may definitely PM you.
 
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The newer protocol says go to four weeks. If you are tolerating it well go to four.
Tell your doc to please look into it again. It is on the co. Website. Go there and print it out for him
6 weeks may not be enough.
 
Hi. I wanted to give you some hope from someone who thought I'd have to deal with fistulas forever but FINALLY found relief, so do NOT give up hope that you can get better!

I developed a horrible, complex fistula during my 8th month of pregnancy (before my Crohns diagnosis) and know how hard it is dealing with a fistula and a newborn. I had a horseshoe fistula that was high up and branched down on both sides of my buttocks (pretty horrible). I must have had at least 10 surgeries that involved placing setons, cleaning them out, changing placement, etc and and I still had horrible pain that was unbearable. I was on remicade and Imuran (I couldn't tolerate Imuran so stopped it) but nothing seemed to work.

Finally, I went to a new surgeon who changed the placement of my setons which helped somewhat, but not entirely. After 4+ years of living with setons I decided to try getting a temporary ileostomy to allow the fistula to rest and heal up. It was a tough decision but it helped me incredibly. I had some relief from the fistula (but it was still draining but not as painful) so a few weeks later my surgeon performed a flap procedure. About 6 weeks after that my fistula drainage stopped completely. It was like a dream come true! I was so happy being pain free that life with an ileostomy didn't bother me. I was so happy with my life again and I wished I had done it sooner. 2 years later (this past summer) I decided to try a reversal and so far so good.

I wish I had realized earlier on how much relief I could get by my ileostomy and it was after talking to 2 other young women who had fistulas and then had ileostomies that I decided to consider it (they also had the same positive experience as I did). So if a surgeon is saying there's no other relief, maybe you can see another surgeon for a second opinion by someone who has a lot of experience in this area. Good luck and stay hopeful!!!
 
Hi all, nearing 6 months that I've had external fissures now, which all get ripped again + adding more every time I get diarrhoea which is near enough now every week. Nothing seems to be working. I'm now terrified of having a sigmoidoscope because of how sore I am. Has anybody had a scope with fissures at all?
 
kellehbeans said:
Hi all, nearing 6 months that I've had external fissures now, which all get ripped again + adding more every time I get diarrhoea which is near enough now every week. Nothing seems to be working. I'm now terrified of having a sigmoidoscope because of how sore I am. Has anybody had a scope with fissures at all?
Click to expand...

Yes I have many times, tell the consultant how sore you are & can they use pain killing gel before they start. Its very good.
I'm like you, I've got multiple fissures. I sitz bath x3 daily & it does help. GTN ointment helps as well but the headaches & general heady feelings are terrible.
Good luck kellehbeans
Grant
 
Grant said:
Yes I have many times, tell the consultant how sore you are & can they use pain killing gel before they start. Its very good.
I'm like you, I've got multiple fissures. I sitz bath x3 daily & it does help. GTN ointment helps as well but the headaches & general heady feelings are terrible.
Good luck kellehbeans
Grant
Click to expand...

Thanks Grant. :)
I will ask them about it beforehand, although think it is going to be a lot more sore after using the enema, which is my biggest worry.
 
I had surgery for the drainage of a perianal abscess. It was a large abscess which was extremely painful. I was admitted to hospital as an emergency and had surgery to drain the abscess. The wound has been left open to heal and I have been attending the hospital on a daily basis to have the wound packed and the dressing changed.
It is now 4 weeks and on my appointment today the nurse told me although it is almost healed on the outside, there is still a 2cm depth inside the wound and that the outside is healing faster than the inside. She said if the wound closes too early I will be left with a pocket which could cause the abscess to re-occur.
She called a consultant who examined my wound (ouch) and he said I will have to come in for further surgery under anaesthetic to open the wound up as the opening is now too small, so packing can be inserted and also to examine the wound to check for 'tracking'.
Is this necessary? Will it damage my wound further? Is packing slowing the healing process? Why is it being packed when some surgeons don't pack the wound?
I'm devastated as I thought I was doing well, the wound is tiny on the outside but the nurse said it's still about 2cm deep.
Any advice or comments would be appreciated as I feel it would be undoing all the good work. I'm so worried incase it makes things worse, I don't know if I should let them re-operate.. I'm thinking I should cancel as I don't want the wound any bigger and it could get infected or cause damage whilst they look for tracking and disturb any granulation tissue forming.
 
Tulip, yes that happens. It happened to me, the skin around it healed faster then the inside and after a couple weeks I was back to extreme pain and had to have surgery again to open it up. Definitely let them do that. They know what they are doing and if you are not in pain yet, you will be if the outside closes before the inside does. It could cause more fistulas and even worse pain. Sorry that's not a positive response, but the surgeons know what they are looking for. (At least we hope so! )
 
I have gone through the exact same thing. They pack the wound, so that it does not close up too soon and leave a pocket of pus with nowhere to go. They also want to check the wound to see if a fistula is draining into it. That would start another abscess forming. That abscess was the most painful experience of my life. I had a 9 lb 12 oz baby with no anesthetic, and that was a piece of cake in comparison. You could always go for a second opinion, to ease your fears.
:ghug:
 
Hi,
We would love for you to join his Facebook group:
facebook.com/groups/camscrohns

diagnosed for 6 years
Current meds: methotrexate, folic acid, remicade infusion every 4wks, vitamin d, fish oil, prednisone when needed (currently tapered), TPN
 
CamsMom3 said:
Hi,
We would love for you to join his Facebook group:
facebook.com/groups/camscrohns

diagnosed for 6 years
Current meds: methotrexate, folic acid, remicade infusion every 4wks, vitamin d, fish oil, prednisone when needed (currently tapered), TPN
Click to expand...

Just asked to join

2
 
Hey guys. I have 2 fistula and one seton. I'm having episodes of increased rectal pain when sitting followed by bleeding and relief. Then, several days or a week later, the pain will return followed by the same cycle.

Question: is this the seton working the way it should? Should I report this to the doc? It seems anytime I go into the doc they say everything is fine and I'm tired of wasting time going in!
 
I agree. The seton is supposed to allow constant drainage. It sounds like you are getting a small abscess building up which then bursts leading to intermittent drainage.

Though if one of your fistulae doesn't have a seton, it could be that one that is causing the problems?
 
Thank you for the advice. I will probably wait until the pain comes back. I recently had that relief I described. I am so sick of going to the doctor and being told nothing is wrong.
 
Like clockwork, the rectal pain started again. I have a, for lack of a better term, bump right by the fistula tract where the seton exits. It hurts when I sit or get up.

I sent a message to the CRS yesterday. If I haven't heard from him by noon, I'll reach out to the GI. I also noticed a very light colored mucus/blood from one of the tracts last night and this morning. Will keep y'all posted on what happens. Thank you again for the support
 
Sorry to hear that GABoy. I hope they get back to you soon.

BTW are you on Vedolizumab? Noticed on your support groups on the left... I'm on Humira, but it's not really seeming to do much good. Getting blood levels/antibodies tested and plan to increase dose to weekly from fortnightly, but GI mentioned yesterday that I could try vedolizumab if that doesn't work.
 
Hi everyone I've got a rectal fistula because of my Crohn's and I had surgery on Tuesday. The surgeon said he wasn't sure what he would do until he had looked and said it would be 1 of 3 options. I woke up after surgery and was told I'd had a seton put in place as the fistula runs across the rectal muscles. It's still very sore and tender and I can't sit directly on my bottom. Walking is manageable but very slow. I haven't opened my bowels since having the surgery because it hurts too much and I'm worried about catching it. Anyone got any advice, or can relate? Also how long did it take you to recover from colorectal surgery? Thanks :)
 
Hi Kat123, I am on Vedolizumab. I have been since June. My markers are very good, BUT they were before too. My GI has had a hard time finding anything to track other than my symptoms. The last time I abscessed, my CRP was wnl.

I was on Humira prior to that and we thought it was working well, but since I abscessed we switched to Vedolizumab and 6MP. I had a colonoscopy last month and he said everything looks great.

I wish you all the best. It isn't pleasant sitting in a chair and having an infusion. I'd rather just inject myself every other week, but oh well.
 
Hi Abbynormal, I have a seton as well. It is painful at first, but should get better. As for bm's, I would make sure you are taking a stool softener to help. I would imagine you're on rx pain meds, which will make it very difficult. Good luck and keep us posted.
 
Thanks for the reply GAboy :)
I'm taking lactolose to help but I haven't had any after care advice as my surgeon wasn't sure what he was going to do before the surgery and then didn't see me after. I was given some paracetamol and codine and told when the anaesthetic had worn off I could go home and that's it! So I don't really know how to care for it- I dint even know fully what a seton was- they said a stitch so I didn't know it was visible on the outside till I googled it
 
Hi Abby,

I have a seton too in a transphincteric fistula, since February this year. I knew they were going to put the seton but I was surprised to have a wound which had to be packed and dressed by the practice nurses at GPs.

I would say that the practice nurses are very knowledgeable about wound care so if you are concerned about that at all don't hesitate to make an appointment with them even if you don't need any packing. A few hadn't seen/heard of a seton before though!

I'd second GABoy's advice about taking the lactulose. Personally I didn't because I had a BM the day after surgery but it was harder than usual, haha! The codeine will make you a bit constipated too but it does help control the pain and gives you a nice floaty feeling.

Having a BM isn't likely to catch the seton, but wiping afterwards might, so you can just jump in the shower afterwards to wash it off. Since having the seton I've used wet wipes rather than normal toilet tissue, but prefer the shower as well if I'm at home.

Regards length of recovery, I'm sure everyone is different due to location, size of wound etc, but for me after about 2.5 weeks there really wasn't anything to pack, i.e. the wound was very shallow, so I just started doing the dressing myself at home.

I first went back to college after 3 weeks, but I was sore and felt like that was too soon, and it was only one session because I had an assessment. After 2 weeks I was going for walks though, and first rode my bike after 6 weeks.

I think it was after 5-6 weeks that it looked like the hole had almost closed up, but even now there is a red and sore area around the seton. So it's not really painful, more sore, but I sometimes take paracetamol, especially before a bike ride.

Hope that helps a bit. It's not a fun time. Feel free to give me a shout if you've got any other questions or just want to talk :)
 
Kat123 thank you so much for taking the time to reply. It's reassuring to know others experiences. I'm glad you said it can take a while to recover as some people say they feel fine the next day or two and I don't... I went for a little walk today- mainly so I could take the stockings off but it was so sore. I think I'll try the wet wipes and see how that goes- I hadn't thought of that or the shower so thank you for that!!
I can't wait to ride my bike as I've had my fistula for 18months so it's been a long time!
 
Abbynormal - thank you for sharing your experience. I will be interested to know how your recovery goes as I am scheduled for a Seton surgery Dec 4th. I am waiting (in discomfort and pain) until then because my insurance benefits start over then and it will save a good bit of money. I have been very apprehensive about the whole procedure. Thanks for your insight!
 
Ahh, you only had it on Tuesday. Be easy on yourself. I think I was barely managing a shuffle around the house at day two so you did well to go for a walk :)
 
Hi hingrum :) do you have to pay for your surgery? I live in the uk so we have the nhs. I'll happily keep you updated on my recovery and hopefully it will be a quick and limited pain!
Thanks kat123, im having a lay down now lol
 
I have to pay my deductible and out-of-pocket. After that amount is met (which is $2,000 for me), insurance starts to pick up 100% of in-network expenses.
 
Wow it's weird how different it is in the uk- I bet it sucks having to pay. On the plus side though I bet you receive good care pre and post op
 
It is very different here with co-pays and deductibles. We have an FSA account. We are able to contribute pre-tax dollars to an account that can be used for co-pays, deductibles and prescriptions. The problem is I've been so sick this year, I've blown through it. So now it is $40 every time I go to the doctor. Expensive prescriptions, etc.
 
Well...it was an abscess. The CRS said he thought the seton got clogged. Does that make any sense? I thought the purpose of the seton was to drain. How does it get clogged?

Anyway, the draining was just with a local. That was not enjoyable. I am in so much pain.
 
GABoy
Sometimes they close up on the outside but still are open from the inside so the stuff doesn't drain and causes an abscess. When the doc looks at it it looks fine until the abscess builds up
Sitz baths and such help keep it draining.
Keep an eye on your WBC sometimes that's a clue.
Taking ABs can help keep it from abscessing as well.
The problem may recur until you can close the entryway.
It's up to your GI and meds to make that happen
 
Thanks Robrich,

Where I'm confused is the seton is still in. Nothing is closed up. They just said the seton "got clogged". I did not understand that.
 
It can close up around the seton. Did for me.
If you go like 3 mos with no drainage and no abscessing and all your labs and imaging is good you may be able to have the seton removed.
That's the goal
I just had mine removed after a year.
I went through similar to you. it would close up for a few weeks the docs would see that and think I am fine and then a week later the abscess would appear.
We kept working the meds aggressively to find what works and finally got there.
Not completely out of the woods but no more seton and no abscesses or drainage
 

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