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pain said:
I had my seton put in 4 days ago. Going ok, some pain\discomfort today.
Stressing about keeping it clean, tricky. Any tips?
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I also had seton placed on July 26 and am spending some quality time keeping it clean and incision packed with thin strand of NaCl soaked gauze. My dad installed an awesome removable shower head with built in filter that is great to really angle it in and around the crack and seton. I fold a NaCl soaked gauze into the crack against the hole (wound) and try to let all the residual poop drain out over the course of a couple hours where I take slow 1/2 mi walk, lie on back with some pressure on butt then remove and do another sitz with quite warm water before packing. I can't pack when there's still brown coming out! Hopefully fistula will be closed soon as I start Remicade on Thurs aug 15, 2013.
 
Thanks Blessings
You got yours just 3 days before me. I'm adjusting to mine slowly. Not much pain from it with the last few days. Started on flagyl as I thought discharge was too green.
Just trying to accept it for now.
Hope you have a quick recovery.
 
Dear pain,
Back at you for safe and full recovery. Hopefully you find the flagyl ok. I took it along w cipro when the crohn's first started in May and was in the hospital. I asked the GI about my fuzzy white tongue then he added FloraStar 2 hours in between antibiotics. FloraStar is sacchormyces boulardi, a beneficial yeast. You may want to pick some up at Walgreens/talk to your doc if not already supplementing with it. The probiotics (lactobacillus) are sometimes packaged w sacc. But you may already know all this, I'm just happy to feel understood on this forum. This is hard stuff we're going through and I'm trying to envision the fistula healing and closing right up- for both of us. Take care.
 
I had a temporary Colostomy for 6 months last year. I had the reversal done in December. Not even a week later fistula returned as bad as ever. Now im finally having a non cutting seton put in place to help with drainage and hopefully reduce pain. Surgeon said only other option is a permanent colostomy. Not sure if its an insurance issue or not, Im on Social Security Disability and Medicaid. Good luck whatever you decide

Daisy G said:
I'm seeking some feedback/any thoughts on my situation?

I currently have two setons in place related to three fistulae that the colorectal surgeon said is complex. I had a MRI scan done a few months back. Since then my GI said that options for aiding the fistulae to heal would be surgery either an ileostomy or a colectomy. He said that the fecal stream has to be diverted away from the fistulae to aid healing of it. I asked if I have an ileostomy could it be reversed if the fistulae heal? He said perhaps but I could develop problems with the fistulae again?

I'm not keen on having invasive surgery though. I know of people who have had a colectomy done and they can carry on with their life afterwards. However for me I'm just not keen on surgery.

I would appreciate any thoughts... thanks
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I am seeing my 16 yr old go through what you guys are describing. She had two Setons, but they pulled one. She was diagnosed Oct 2012. We are off antibiotics, and getting Remicade which has been the ticket. She still has occ. bleeding which increases with physical activity, but no pus. The Seton is tolerable as far as sitting in school on cushions, but lots of walking etc she needs to use barrier creams as in Calmoseptine or Lidocaine ointment to numb around Seton. Sitz baths with Epsom Salt are soothing when I can get her to do them. They really help with hygiene esp. after BM's. Recently we saw a Colorectal surgeon in Georgia, and he gave us a Rx for Flygyl rectal ointment which has to be compounded. He said he came up with this. We were discussing taking her Seton out, and he said this would help to prevent refistualization. I chickened out on taking hers out due to her starting school. This disease is all consuming for her and myself as you all know. She is struggling with conforming to her diet which doesn't help when the end results come out the other end, and irritate that fragile tissue around anus. God Bless all of you, and may you have him by your side as we have through this journey.
 
I was home schooled all of my Sophomeore and half of my junior year of high school. Then I started Remicade and it healed up the fistulas. I was able to graduate on time and attend college. I had another flare up during college I think from stress and working too much. I was on Remicade for over 10 years and 8 of those I was in remission, and able to work a full time job, it was a miracle for both my Crohns and colo rectal disease. Currently on Humira and its helping the crohns but does nothing for my fistulas.
 
aruschmann said:
I had a temporary Colostomy for 6 months last year. I had the reversal done in December. Not even a week later fistula returned as bad as ever. Now im finally having a non cutting seton put in place to help with drainage and hopefully reduce pain. Surgeon said only other option is a permanent colostomy. Not sure if its an insurance issue or not, Im on Social Security Disability and Medicaid. Good luck whatever you decide
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Hi Aruschmann
Thanks for your feedback it is much appreciated.

At present I have an appointment scheduled for end of October with a different colorectal surgeon to seek a second opinion. I'm just hoping in the interim that Remicade does what it's supposed to for healing fistulae so that I don't experience any more issues that will force me to have no alternative but surgery.
 
This is so awesome. It's nice to know there's other people out there that really understand this not so glamorous lifestyle that we've all had experience with!
 
Daisy G said:
I'm seeking some feedback/any thoughts on my situation?

I currently have two setons in place related to three fistulae that the colorectal surgeon said is complex. I had a MRI scan done a few months back. Since then my GI said that options for aiding the fistulae to heal would be surgery either an ileostomy or a colectomy. He said that the fecal stream has to be diverted away from the fistulae to aid healing of it. I asked if I have an ileostomy could it be reversed if the fistulae heal? He said perhaps but I could develop problems with the fistulae again?

I'm not keen on having invasive surgery though. I know of people who have had a colectomy done and they can carry on with their life afterwards. However for me I'm just not keen on surgery.

I would appreciate any thoughts... thanks
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Daisy G: I have had three colostomy bags and one illeostomy bag in the past. All three have been to divert the fecal stream so multiple fistulae and abscesses could heal properly. You may or may not have reoccuring fistulae after the reveral should you choose to have one. Both an illeostomy & colostomy are difficult to deal with, but once you have it you will more than likely feel so much better! I don't know your age, but a lot of it was hard for me simply b/c of my age and stage in life. (I had them in 9th grade, 11th grade, 12th grade -2 of them- and at 20 yrs old) As far as how I felt, I felt healthier and had more energy. It's more to keep up with, but it's not a bad thing! The most important thing to do is keep your doctor & surgeon informed so they can help you make the right decision! I hope that gives you some insight!
 
Hi Blessingsk,
How are things going gor you?
I'm stuggling a bit, feeling very down about it all. Life just seems so unfair.
I hope things are better for you.
 
Avari.Mitchell said:
Daisy G: I have had three colostomy bags and one illeostomy bag in the past. All three have been to divert the fecal stream so multiple fistulae and abscesses could heal properly. You may or may not have reoccuring fistulae after the reveral should you choose to have one. Both an illeostomy & colostomy are difficult to deal with, but once you have it you will more than likely feel so much better! I don't know your age, but a lot of it was hard for me simply b/c of my age and stage in life. (I had them in 9th grade, 11th grade, 12th grade -2 of them- and at 20 yrs old) As far as how I felt, I felt healthier and had more energy. It's more to keep up with, but it's not a bad thing! The most important thing to do is keep your doctor & surgeon informed so they can help you make the right decision! I hope that gives you some insight!
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Why do you think you felt healthier and more energetic with the bag? I thought those with a bag are more prone to dehydration and get less nutrition.
 
When I had temporary colostomy last year I felt somewhat better. Colo rectal fistulas healed up, but I didnt notice any extra boost of energy. I thought I would spend alot less time in the restroom, nit really. I also had alot of fitment issues so was a crappy situation literally. I know some say they regret not going the bag route sooner. I guess just depends where your Crohns is active. i unfortunately have 6 active spots, 2 being in colon and rectal area. Everyone is different, good luck
 
Avari.Mitchell said:
Daisy G: I have had three colostomy bags and one illeostomy bag in the past. All three have been to divert the fecal stream so multiple fistulae and abscesses could heal properly. You may or may not have reoccuring fistulae after the reveral should you choose to have one. Both an illeostomy & colostomy are difficult to deal with, but once you have it you will more than likely feel so much better! I don't know your age, but a lot of it was hard for me simply b/c of my age and stage in life. (I had them in 9th grade, 11th grade, 12th grade -2 of them- and at 20 yrs old) As far as how I felt, I felt healthier and had more energy. It's more to keep up with, but it's not a bad thing! The most important thing to do is keep your doctor & surgeon informed so they can help you make the right decision! I hope that gives you some insight!
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Thanks Avari.Mithcell I appreciate you sharing your experience.

I had an appointment with my GI last week who reasurred me that a defunctioning ileostomy might not be the only option for me. He said he'll do a colonoscopy in a few weeks time and see exactly what's going on and take it from there... My colonoscopy is scheduled for the 20/9 and I'm looking forward to it just because I haven't had one done in the past two years so I'm keen to know exactly what's going on in my colon at present. I'm passing blood in my stool at present and the GI is aware of this he said when he does the colonoscopy he'll be able to tell where it's originating.

So my fingers are crossed and I'm feeling hopeful that surgery might not become a reality for me (at this stage anyway!). My fistulae aren't bothering me at present and the amount of discharge has eased up given that I've recently been on a course of Metronidazole as well as Prednisolone...
 
Just got back from Dr. 3 fistulas and a good old hollering at me. Haven"t been to Doctor in a year. They were mad said I went to long . Well now they want me off 6mp to go on remicade if insurance covers it. They are have me tested for anti-bodies to do remicade. Also worried about cancer! Also good old colonoscopy YES!!!!!!!!!!!!!!!!!
 
Hello, I had a fistulotomy after 3 recurring abscesses in the last 6 months. The surgery was this past Tuesday and I've yet to have a bowel movement even though I've been taking stool softeners twice a day since surgery. It has now been 4 days and I'm starting to feel nauseous and have heartburn which I never have. Has anyone had the same issue and what helped? Thanks in advance.
 
Imr, are you on pain meds? Those can cause constipation. Whenever this happens to me I drink a lot of water, and take Miralax along with stool softeners. However, my colorectal says that Metamucil is good too, because it regulates the stool; it prevents it from getting too hard are soft. Or sometimes something as simple as drinking a hot cup of mint tea can help me with constipation. Good luck, and I hope you feel better!
 
Hi everyone,
I too am dealing with abscesses that turned into fistulas. I originally was diagnosed with Ulcerative Colitis and had my colon removed. I had J Pouch surgery. My diagnosis was changed this April to Crohn's due to the fistulas. I had surgery July to have a temporary ileostomy and placement of non-cutting setons. The pain from the fistulas was unbearable when the stool would pass through so the ileostomy has helped with that. I am able to finally eat again. The drainage from the fistulas has lessened a lot. The only downside with me right now and it has kept me from work where I stand all day, is that I still have urges to go to bathroom and I pass mucus. It was really bad at one point but now I am on nightly rectal steroid foam. Sitz baths help. Anyone having this issue? Does it go away? I am struggling with whether I should got a reversal eventually as I am worried that this history will repeat.
Thank goodness for this forum.
Thanks in advance for any advice,
Angie
 
Hi Essieluv, thanks so much for the reply. I am on pain meds also. I called the doctor and he told me to take some milk of magnesium which thankfully seems to have done the trick. I feel semi human again. It is so frustrating. I an undiagnosed, they are chalking my recurring abscesses and fistula to anal glands but still have to continue to see the GI but apparently Crohn's is not ruled out. From everything I've read, it seems to be a waiting game. Will see how it turns out.
 
On antibiotics still leaking though. Being test for anti-bodies to do remicade. On 6 mp now. Will see what happens. Just got the call it will be 6mp and remicade!
 
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Hi guys,I was diagnosed with probable Crohns in January. In may I had an abscess and got it drained. Within two weeks I had a fistula and got a draining seton inserted. I was a bit uncomfortable for the first 2 days but became used to it much quicker than I thought. Last week, I started getting really foul smelling discharge and started paining a lot. Went to my surgeon and he said the seton should come off. Yesterday had a surgery to remove the seton. Now they have left the wound open. It’s slightly painful. But I’m more worried about the bleeding. It’s not a lot but I’m bleeding almost all the time. It’s only been a day. But can anyone tell me if its normal to bleed ? Thanks a lot.
 
Rhea, I don't have an answer to your question and I hope someone does, but were you having fecal discharge through the hole? The surgeon removed the seton, but how will the fistula close or do they expect you to pack it with saline gauze? I think some blood is to be expected, but all the time doesn't sound right.... Wish I could help.
 
Hi Blessingk.

Thanks for your response. It's left open as the doc said it should heal from inside. The bleeding has reduced significantly. I'm doing sitz baths with potassium permanganate and that seems to be helping. Was only worried about te bleeding part. It's still there but slightly less.
 
Mine bleeds. Sometimes a little and sometimes a lot. The surgeon says it is normal. Do the think it is going to close? I am surprised they took out the seton so quickly
 
SailorLuna, what is your thought on average length seton is in? I think I read 3-6 months, but if on Remicade and starts to close earlier, surgeon might remove earlier. Is yours still in? Your signature says no more humira. How are you doing? Thanks.
I've had seton in for two months, still bleeds every morning but not that much.
 
Rhea george said:
Hi guys,I was diagnosed with probable Crohns in January. In may I had an abscess and got it drained. Within two weeks I had a fistula and got a draining seton inserted. I was a bit uncomfortable for the first 2 days but became used to it much quicker than I thought. Last week, I started getting really foul smelling discharge and started paining a lot. Went to my surgeon and he said the seton should come off. Yesterday had a surgery to remove the seton. Now they have left the wound open. It’s slightly painful. But I’m more worried about the bleeding. It’s not a lot but I’m bleeding almost all the time. It’s only been a day. But can anyone tell me if its normal to bleed ? Thanks a lot.
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When my seton came out (it actually fell out on its own), it did bleed. Like you, I had constant bleeding, although it wasn't a huge amount. After a couple of days it went away. I wish you good luck with your healing, and hope everything gets better soon. Sending you hugs :hug:
 
Hi everyone, I am new to forum. I have had Crohn's for 30 years. Multiple bowel resections and obstructions.
Recently I developed a fistula from rectum to labia, there is a drain a seton. I had it placed almost 2 weeks ago. Area very sore. My question is has anyone had swollen lymph nodes post op? Tender in groin area. Have NO idea what is going on, should I resume Humira????
Thank you
 
Hello I am new to the forum. I have had crohns for 8 years now and just finally reached remission! I have had a seton for the last 2 years. Mine seems to bleed off and on, and drains regularly (more after a bowl movement). I was just recently in for surgery the plan was to remove the seton and place a fistula plug with an advancement flap. I was unable to have the surgery because of a bad infection. The surgeon was able to widen my fistula tract and it helped relieve some of my daily pain and it also seemed to have stopped the bleeding that I was having. I see my surgeon again on Tuesday. I am really just confused if I should try the surgery again or just keep the seton,
My husband and I are really struggling with what to do. Any advice would be amazing. Thanks!
 
5cents and KarlieK, I send my support.

5cents, 2 weeks is pretty recent. When is your next colo rectal surgeon check up? I would want their opinion on how the healing looks from their end. He/she should at least be able to tell if things are calming down or going in another direction that would require attention. Hopefully swollen lymph nodes are temporary and a response to abscess/fistula not being able to drain more, but again, definitely want dr to check it. Sending prayers for healing.

KarlieK,
So they did not do plug/flap surgery bc of infection, but surgeon widened tract for better drainage which has helped relieve pain? Was the infection related to abscess/fistula or was it an infection in another part of body? Has it cleared up? I guess that's the only way they'd attempt surgery again. I wish I could help, but I have had seton for 2.5 months and return to surgeon first of Nov to decide if we can remove seton (remicade has hopefully been closing it) or if that flap procedure is necessary. Gratefully, I have not had much pain since the seton has helped the drainage. So I'm thinking if yours was recently painful after 2 yrs there is still poop getting in there after bm causing infection issues in which case the plug/flap would hopefully help close that once and for all. Such a personal, private decision to pray on. I'm sorry you are going through this.

Bless us all. In gratitude...
 
Thanks! Blessingsk,
They weren't able to put the plug/flap. Yes the surgeon widened the fistula tract. In May 2011 I had a general surgeon that operated on me, I had a horseshoe shaped abscess that he drained. He created two drain sites on my butt cheeks on either side of my rectum. In Sept. 2011 I found a colorectal surgeon that operated and placed the seton. In June 2012 she removed the seton. In Oct. 2012 I had the seton placed again. I was still in a ton of pain in April of 2013 so I decided to find a second opinion form another colorectal surgeon. The left side drain site has healed and no longer drains, the right side is still very painful and drains that is where most of my pain is coming from. The right side drain site is what the abscess is attached to and where the infection is coming from. I would be able to live with the seton if I didn't have those two drain sites. I just don't know where to go from here. I would love to have someone just tell me this is what I need to do and this will be the outcome, but I know that its not an option or reality. Just trying to make the right decision and its really hard because it seems as though there are no clear cut answers with this disease.
 
Hello,

Just would like to express my frustration on terrible condition I suffered for already 8 months, after hemmie excision. I am left with unhealed wound, which has no signs to heal..

I would like just to remind that fissure/ulcer or non healing wounds in this area might appear to anyone, even without Crohns, and to heal this place is extremely difficult. The gold standard is LIS surgery, however if fissure is due to Crohns there should be different approach selecting healing. I was suspecting my problems as Crohns, but not sure how can I confirm if I have the one.
 
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When I was 14 I had a fissure. I remember a really painfull bm and feeling it rip. After a few days of increasing pain I saw a general surgeon. He explained the surgery and it all healed fine. But I started vomiting and constant diarrhea. This all started over Christmas break from school. Many tests and I believe 3 months later finally got a Endoscopy done and was diagnosed with Crohns. Ive had Crohns over 17 years and had many fistulas but no more fissures. Sounds like you might have Crohns mine is very active in colon and rectum but I have 6 major points of inflammation total all through my digestive tract. Sounds like you need to see a Gastrointestinal Dr and have a scope done. That should confirm Crohns or not
 
Have a seton procedure scheduled next week because of a persistent fistula even after 6 Remicade infusions. There were cycles of apparent healing followed by worsening of fistula condition all along. I guess the time has come for the next logical step. Not very pleased but I guess you live and learn. Life was quite different just an year ago (Sigh!!).
 
Idle brain, I wish you the best with seton. Mine has really helped. Ended the pain down there from chronic infection. Gives body a chance to drain and heal, esp when combined with Remicade. Just make sure you keep it as clean as possible down there. I really love my handheld shower head I can take off and spray anywhere. And sitz baths, then dry good and use gauze as needed. Keeping you in my prayers for successful procedure, excellent surgeon and complete recovery. I know how interfering these issues can be to life, but the more we can accept and even have gratitude for all these life arrangements, the easier it is to bear. So grateful we can understand, support and encourage each other here bc I don't know anyone in my regular circles who has seton! And instead of trying to explain it, I just say 'colo rectal issue'! But here, I can get specific and be understood :)
 
Thanks BlessingsK. Good to hear some positive side of the seemingly bothersome procedure. Good luck to you as well.
Will post on my experience once done. I was told I will be given IV sedation and a local anesthesia. Do you know if that is typical? Also, can you please tell me what the typical recovery time and process is like?
 
Well, I've had my seton in about 3.5 months. I began my first remicade infusion about 2 weeks after having it inserted. I actually meet with colo rectal surgeon tomorrow and he will let me know what he thinks. I'm hoping he will just snip it out in the office and say it looks like tissue around it is closing/healing.
I've heard that some people have their seton in for 6 months or longer. Every doctor seems to be different. What they told me was that if it didn't heal shut, they would do a flap procedure, removing tissue from somewhere and repairing hole to shut it closed. Hoping to avoid that.
Like I said, I've tried to do my part with clean diet (paleo= vegetables and meat and a little fruit) and no stress and a lot of showers, baths and gentle wet wipes. No stress, :hug: ahh, that sounds good. Wishing you the best.
 
Hi, Looking for a little advice, thoughts, suggestions. My limit with poop and bum talk with my friends and close ones is drawn at fissures and fistulas. I've had issues with fissures and fistulas for about 2 years now. It had gotten to the point where every time i had a bowel movement, the toilet was filled with bright red blood and it felt like i was literally pooping knives out.

Every since i began Remicade, last January, the skin tags mostly went away and shrunk, the pain was relieved practically the next day by at least 70%, and pooping became more bearable. One thing though, is that there has always continued to be puss leaking. I'm due for treatment in 2 days. BUUUT here's what's freeking me out... my stool is normal and has been since the beginning of the treatment. I have particularly been feeling great this past week, eating well, normal bowel movements, barely any anal pain really, etc....Today, for the first time ever, i discovered some brown stuff in my pantyliner ... anal leakage? This has never happened to me before, not sure why it is, nor what to do about it. I saw my GI last week and I've asked her what i should do about the fistula and fissures ... she pretty much brushed it off as she always does and said there isn't much to do. I take sitz baths every day, i've tried nitro and a bunch of other creams...She says docs don't really want to operate down there, much less in the presence of a chronic inflammation disorder. I was really disappointed... Sure, it's much more bearable, but am i just suppose to accept that they're there and live with them? Isn't there more that can be done? And what is up with this leakage? Should i be worried? I feel like i've come a long way and i am close to remission, but these little anal issues are quite persistent. Help!
 
Confused,
Sorry to hear about the issues. I just saw colo rectal surgeon today and he said same thing about not wanting to do any procedures down there that aren't absolutely necessary.
I originally started w abscess that turned to fistula. Surgeon did procedure under anesthesia to locate fistula and place seton to keep drainage going. Just had that removed today, praise God. I just wonder if you've seen surgeon to assess fistula or of your problem is more fissures. I suppose it's important you locate the source of brown you found on panty liner - like stick gauze up in there and see if its just slight leakage from anus or skin tags that weren't fully cleaned or actual new fistula (hope not). Take care, I know this is hard.
 
I have had two or three fistulas since 1989. I was actually diagnosed with Crohn's in 1990. In 1992, I had an abscess that bled for three months before the doctor drained it and used intravenous drugs.:eek:

2
 
having fistulas fissures and such is a pain in my ass:lol: yesterday i got out of the hospital with the very rare rash pyodem a and ecthyma gangrenosum, very sacary its like gangarine, its a abscesse that tunnles out from the inside out. I hope the treatment they gave me works
 
Finally I am in this group and glad to see you guys. Got an abescess in the right side of my anus yesterday. Now it is already very painful when I sit on a chair. But I am on anti-tuberculosis medication for 6 months and it seems everything goes well! Can imagine that!
No doc knew I got CD or intestinal TB. It even looks like that god is pondering which one be assigned to me.
I am really down. Never felt so hopeless.
 
Hi all,

Was wondering if someone can share their post-seton procedure experience. Had one placed last week. The first 2 days after surgery were relatively OK but have been experiencing sharp pain especially while sitting almost rendering me helpless since the last couple of days.

A little concerned as I was expecting to feel gradually better but seem to be heading the other way. I was told that the rubber band that was placed along with the seton thread can be removed in 3-4 weeks. Was wondering if that is the source of pain and discomfort and if an earlier removal would help.

Any thoughts from those who have been there? Thanks in advance.
 
I had a non cutting Seton placed in August and havnt noticed much difference pain wise. Still hurts to sit or walk and still having lots of Diarrhea so thats not helping anything
 
so its been about 10 days since my hospital stay and new treatment for the pyodem a and ecthyma gangrenosum and its working thank god. its slow but everyday is a bit better. I have had crohns for 20years and this year its been one thing after another. what really sucks is knowing im never going to get better and my type of crohns is rare and im 100% full with no more options left, ive been on it all. only predisone morphine humira and sense of humor gets me through the day as well as my son that they told me i would never have, well i cant have anymore kids now i dont even have a period anymore, my body is too sick. today i am rolling around in selfpity, ill snap out of it soon i hope. ill be alright i dont remember what it feels like too have a good day so in my mind i dont know different. anyway thats it for the moment i just had to vent a little, depression is major in my life bc of beening sick for so long and taken down at a young age, ive missed out on alot of normal life experinices. but i tried to remind myself that i have this illness bc im strong and able to deal with it most times. its all good.
 
No fistulas or abscesses yet (fingers crossed) but I have had some really bad, painful fissures. Once I had a fissure so bad that I was unable to walk. And my insurance company will never ever approve any of the creams for pain relief or healing. They cost around $500. They say it isn't medically necessary!!
 
Hey everyone. I am a mother of a 14yom with a fistula that started this past summer. We are currently undergoing testing for Crohns. Any suggestions anyone gave give that helps cope, and manage pain and discomfort is greatly appreciated. They have put him back on Flagyl. This seems to heal it temporarily, of course it comes right back.
 
Carol,
Sorry to hear your son has fistula. With me, they did procedure under anesthesia to determine exact location then inserted seton for about 3.5 months, now hoping remicade keeps closing it. I have found that a removable shower head, lots of sitz baths, gauze w saline solution and careful cleaning are all helpful. I'm also a huge fan of SCD diet - no sugar helps immune system. Praying these tracts close for all of us. I understand how disrupting this is. I'm still not back to work yet. Good luck y'all.
 
I was diagnosed cause of pereanal fistulas and abscesses and I have a mild case of crohns so no this dose not mean u have a savere case of crohns
 
About 2 years ago I started a battle with a fistula. Never have been diagnosed with crohns. I had countless setons placed, a fistula plug, always came back. I then had a fistulectomy. My surgeon had to go back in and clean it out one time after as it didnt heal quickly enough and started to infect again. I am a liver transplant recipient and am on Immuno suppressant drugs. Its been 2 months now and it seems to be healed and gone. I know it could come back, but im hopeful my battle is over. Ive had no problems after the surgery as I was told I could have problems with leakage after. I pray you all have good outcomes with your journeys.
 
I wish to reassure anyone. I have lived with a recto-vaginal fistula passing gas and pus on and off for the last year. I was definitely discouraged at first. Then I became hopeful when it closed. It seemed it had healed. I was told by nurses Remicade often worked to heal fistulas. Then, my gynecologist said ``you must continue to exercise``. So I tried my stationnary bicycle. Bang! It reopened just from the pressure of the seat. I stopped bicycling. Then tried a reclined bicycle at the gym. That seemed to ease the pressure. I tried swimming. That was helpful. The chlorine in the water seemed dry the vagina temporarily. But I have found most helpful taking long hot baths wiht salts or baking soda to relieve the inflammation in the rectum therefore easing the swelling. I had many vaginal infections. I was really fed up of the whole situation. Then it got better for a while.The fistula gradually stopped oozing for several months, passing very little gas. Unfortunately, it has reopened recently after one time sexual intercourse and has given me a full blown persistent vaginal infection that I am treating with creams and flagyl. I was absolutely convinced my sex life was over. I felt very depressed. So I asked my GI specialist for an operation. I thought that might help my situation. Soon I became really scared. I imagined myself with a permanent ostomy. I don't think I can live with an ostomy. I love swimming. I love life and can't see myself living with a bag. I feel awful. I am scheduled to see the surgeon by the end of this month. I think I might just give up the operation. I really do not know what to do. I have two great teenagers that I love very much. Every time I get sicker, they get very discouraged and afraid for me. They are so scared to become as sick as I am. I feel I must do everything to keep my hopes up and try to reassure them. I am hopeful I will find a solution somehow. I am presently injecting myself with colloidal silver in my rectum using a syringe. It dries up the area but does not seem to heal the fistula.I have not given up hope. I am willing to do anything to get better. I will keep all of you posted if I find something really good. I am now taking large intake of vitamin C and will start again the carrot juice drinks on a more regular basis. I am thinking of searching for healers. I empathize with you all. I wish you all respite from this despicable condition. If I find other means to alleviate my pains I will certainly share them with you with great joy. Never give up. There is a solution out there to be found. With everyones efforts, we can find a cure. So be courageous and stay positive. I love you all. Mj
 
what is scd diet

SCD stands for specific carbohydrate diet. Introduced in book Breaking the Vicious Cycle by Elaine Gotschal (sp?). Helps put Crohn's into remission. Very similar to Paleo-- concept is feed good gut bacteria, starve bad bugs and candida and digestion / gut lining can heal quite miraculously. It's meat, fish, vegetables, little fruit, little homemade yogurt. You release all grains (wheat, rice, quinoa, corn), sugar, most dairy, alcohol. Join me and bring Brussels sprouts to the next cocktail party you're invited to! Hey, as long as I have one or two good poops a day, I'm sticking to it!!! Prayers for everyone. I'm with you.
 
9 months I am still not healed. Evermore considering some that I have some side disease as crohns. Could some of you experienced tell, what kind of tests I should start with to possible find that condition?
 
A combination of tests may be needed for a Crohn’s disease diagnosis.
The symptoms of Crohn’s disease can be similar to those of other illnesses, including irritable bowel syndrome (IBS), and ulcerative colitis.
To rule out other causes and pinpoint a Crohn’s disease diagnosis, your doctor may run one or more of the following tests.
Blood Work
Blood samples are tested for anemia or signs of inflammation
Stool Tests
Stool matter is analyzed for signs of bleeding, and infection by bacteria, virus, or parasites
Barium X-ray
When ingested via enema, barium allows internal organs to be seen clearly on an X-ray
Colonoscopy
A procedure using a small tube to view the rectum and the intestines
Biopsy
Tissue sample of any inflamed area taken for lab analysis
Computerized Tomography (CT)
A procedure utilizing computer imaging and X-ray scanning
Video Capsule Endoscopy

Here is the great websites to find more information:

http://www.crohnsandcolitisinfo.com/crohns/disease-diagnosis?cid=ppc_ppd_hgast_ggl_036374

http://www.mayoclinic.com/health/crohns-disease/DS00104/DSECTION=tests-and-diagnosis
 
So i gat the results and i only got the one pyodema gangrenosum, and its treatable, its just going to take time and for me not to pick at it:lol: but all looks good for me to start humira again soon which is a good thing
 
So... brand new and first post. October 29, 2013, diagnosed with peri-rectal abscess, which was drained. November 26, 2013, had fistula surgery with insertion of a Seton. This week, December 3, 2013, had a follow up visit where the colorectal sx told me that I had polyps, which were removed and non-cancerous, as well as multiple fistulae, all of which necessitates IBD work up. I had Prometheus blood test on 12/3, and will be going for colonoscopy in about 3-4 weeks. What a great Christmas! I guess I'm putting this history out there for advice. I have a Seton, which is just miserable at this point in time. I'm having a hard time sitting and wearing anything but sweat pants. I'm an attorney, so sweat pants in Court are a bit of a problem. Anyone out there with a similar history that can give me some hope that this gets better would be great.
 
There are lots of people here who have had success with setons, so I am sure someone will post something soon. I just wanted to send my support - I am heading in for seton placement and fistulotomy on December 17th. I have a desk job, so am dreading the return to work and having to sit on my ass all day after surgery!

Hope you get some answers and some relief after the scope. Remicade really helped keep my fistulas quiet and closed for years and kept me in remission.
 
Last edited:
Hang in there, my experience w seton has been so far, so good.
Placed July 2013 after nasty abscess and drain.
Kept hole open and draining, began remicade in August, closed some.
Seton removed in Nov, keeps closing, now just little fecal drainage out hole caught by 2 in gauze the couple hours after I go #2. See colo rectal surgeon next week.
I keep showered and sitz baths.
Pray it keeps closing. But to the attorney, I have been off work throughout this (dx Crohn's, month of May spent in hospital, so weakened it has taken 6 months to have energy to go back to work). I'm a doctor and tomorrow is first day back.
I know I could only wear baggy shorts and airflow and minimal sitting was required back when seton was placed.
I'm sorry guys, but my experience was I couldn't work while I was trying to heal early on. This is a serious condition and if its not kept very clean, or if sitting aggravates (it did me), I just couldn't risk another one or a serious infection. Money is tight and I was denied disability, but like I said I'm going back to work tomorrow and putting it in God's hands. If I need to work part time doing something like retail, I will to heal this.
Hard decisions, standing w my brothers and sisters here.
 
Thanks BlessingsK. It is so great to have the support of knowledge of those who have been through similar problems and procedures.

I have an excellent workplace and very good benefits, so I am very lucky to be off at least until January 2nd with no loss of pay.
 
Hi everyone hope you are all good. Thought since id my first fistula removed on the 28th nov 2013 I would join the group.
 
Carlee, what are your symptoms? Do you have crohn's ? I thought fistulas were tunnels from anus to buttock or anus to vaginal area.
 
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.
 
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.
 
Carlee said:
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.
Click to expand...

Don't mean to scare you. Wish you the best.:)

2
 
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.?
 
ey218 said:
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.?
Click to expand...

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 :p.
 
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!
 
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.
 
nogutsnoglory said:
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.
Click to expand...

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!
 
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.
 
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
 
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.
 
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.
 
I don't know the answer to your question but hang in there. I once had an abscess that bled for three months.
 
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
 
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.
 
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?
 
myriahdawn said:
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
Click to expand...

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.
 
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!
 
exit4 said:
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!
Click to expand...

Do you know what kind of plug it was? I hear there are two types of materials used
 
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.
 
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?
 
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.
 
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. :cool2:
 
Hi all.
Just looking for a little advice.
I had a seton inserted in july 13 for an anterior fistula post failed advanced flap, that is healing slowly still drains everyday. Left side.
Now with the last three weeks I have a red / bruised spot on the right side. Feels about the size of a pea. No drainage and most of the time no pain. Today its a bit achy.
I haven't been diagnoised with crohns. Do you think this could be another abscess/ fistula. I have been taking antibiotics for over a week with no change to it. I was thinking of putting ichthammol ointment on it to see would it bring it to a head. Went to the gp but she wasnt much good.
Praying its not another fistula.
 
I hope it is not either, but it does sort of sound like it! If you can manage frequent sit baths (either on the toilet with an insert or in the tub) with epsom salts that might help draw it out. That was what my doctor recommended.

How is it feeling now?
 
been looking for a group like this for a long time.
currently going through a parianal abscess surgery - 6 weeks after surgery and barely healed....life sucks...but good to know there are people to talk to.
 
Hi all, it is like a breath of fresh air to realise I am not alone in this battle of fistulising crohns. I have been struggling since my little girl was born 8 years ago with a peri-anal fistula. Since then, I have had 17 surgeries, including multiple seton's, plugs, laying open and finally a colostomy. I wish all my fellow crohnies a happy new year and pray that it is a year of healing. x
 
HI All,
I'm joining too.
My first fistual formed within 6 months of being diagnosed. Remicade closed it but now on Humira and went for an MRI to find out if i had a recto-vaginal fistula. They said no but they found numerous "communicating" fistula in my recto-anal area that i had no idea was there. Since I'm on Humira for fistulas and i have a multitude of them i will ask for alternative treatment. I'm hoping to be prescribed MM so i can obtain CBD oil. Antibiotics never seemed to work for my fistulas in the past.

Also i have an extra-intestinal manifestation that is related. . . Hidredenitis. Boils in glandular areas. I have them in my groin/anal area. fun.
 
ey218 said:
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.?
Click to expand...

Is it possible to try remicade instead of Humira? Its much more inconvenient but in my experience (and it seems to lean this way from what i've been reading) Remicade works better than Humira for closing fistulas.
 
Hi Tracy, just wondering did they say your pregnancy exacerbated your crohns?
I deveolped a peri anal abscess whilst pregnant which lead on to a fistula and I have now ? .? Deveoloped another one whilst also pregnant both pregnancies have resulted in miscarriages. I havent been diagnoised with crohns , just trying to figure things out its all very upsetting.
Thanks, hope you are doing ok with your colostomy.
 

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