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



 
08-13-2013, 01:24 AM   #301
BlessingsK
 
BlessingsK's Avatar
 
Join Date: Aug 2013
Location: Austin, Texas

My Support Groups:
I had my seton put in 4 days ago. Going ok, some pain\discomfort today.
Stressing about keeping it clean, tricky. Any tips?
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.
08-13-2013, 11:44 PM   #302
pain
 
Join Date: Jul 2013

My Support Groups:
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.
08-13-2013, 11:59 PM   #303
BlessingsK
 
BlessingsK's Avatar
 
Join Date: Aug 2013
Location: Austin, Texas

My Support Groups:
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.
08-16-2013, 11:27 PM   #304
aruschmann
 
Join Date: May 2013
Location: Sioux City, Iowa

My Support Groups:
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

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
08-17-2013, 07:12 AM   #305
pipmom
 
pipmom's Avatar
 
Join Date: Feb 2013
Location: knoxville, Tennessee

My Support Groups:
∑ Stoma
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.
08-17-2013, 10:16 AM   #306
aruschmann
 
Join Date: May 2013
Location: Sioux City, Iowa

My Support Groups:
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.
08-19-2013, 02:58 AM   #307
Daisy G
Senior Member
 
Daisy G's Avatar
 
Join Date: Nov 2008
Location: Victoria, Australia

My Support Groups:
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
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.
__________________
Daisy G

Crohns Disease diagnosis: July 2007
Osteopenia diagnosis: March 2012
Current medications: Puri-Nethol (Mercaptopurine), Remicade (Infliximab)

Previous medications: Augmentin, Metronidazole (Flagyl), Amoxycillin, Prednisone, Pentasa (Mesalamine), Imuran (Azathioprine), Salazoypyrin (Sulfasalazine), Humira (Adalimumab), Salofalk Mesalazine enema & Budenofalk (Budesonide) enema.

Previous supplements: Ferro-Gradumet; Duro-K (Potassium Chloride)
08-22-2013, 01:34 PM   #308
Avari.Mitchell
 
Join Date: Aug 2013
Location: Columbus, Indiana

My Support Groups:
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!
08-22-2013, 01:47 PM   #309
Avari.Mitchell
 
Join Date: Aug 2013
Location: Columbus, Indiana

My Support Groups:
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

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!
08-23-2013, 08:06 PM   #310
pain
 
Join Date: Jul 2013

My Support Groups:
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.
08-23-2013, 08:19 PM   #311
nogutsnoglory
Moderator
 
nogutsnoglory's Avatar
 
Join Date: Sep 2009
Location: New York

My Support Groups:
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!
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.
08-24-2013, 08:38 PM   #312
aruschmann
 
Join Date: May 2013
Location: Sioux City, Iowa

My Support Groups:
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
08-28-2013, 02:11 AM   #313
Daisy G
Senior Member
 
Daisy G's Avatar
 
Join Date: Nov 2008
Location: Victoria, Australia

My Support Groups:
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!
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...
08-29-2013, 06:27 PM   #314
Irish86
 
Join Date: Nov 2012
Location: meriden, Connecticut

My Support Groups:
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!!!!!!!!!!!!!!!!!
09-07-2013, 07:09 PM   #315
lmr
 
Join Date: Sep 2013

My Support Groups:
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.
09-07-2013, 10:25 PM   #316
Essieluv
Senior Member
 
Essieluv's Avatar
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!
__________________
Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
09-08-2013, 01:58 AM   #317
angiedawns
 
Join Date: Sep 2013
Location: Canada

My Support Groups:
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
__________________
Angie K
Diagnosed with UC in 2009
Colectomy in 2010
J pouch surgery 2011
Diagnosis change to Crohn's 2013
Current meds: Remicade
Cortifoam
09-08-2013, 11:09 AM   #318
lmr
 
Join Date: Sep 2013

My Support Groups:
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.
09-10-2013, 05:47 PM   #319
Irish86
 
Join Date: Nov 2012
Location: meriden, Connecticut

My Support Groups:
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!

Last edited by Irish86; 09-14-2013 at 07:50 AM.
09-14-2013, 01:54 AM   #320
Rhea george
 
Join Date: Feb 2013
Location: Trivandrum, India

My Support Groups:
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. Itís slightly painful. But Iím more worried about the bleeding. Itís not a lot but Iím bleeding almost all the time. Itís only been a day. But can anyone tell me if its normal to bleed ? Thanks a lot.
09-14-2013, 10:36 PM   #321
BlessingsK
 
BlessingsK's Avatar
 
Join Date: Aug 2013
Location: Austin, Texas

My Support Groups:
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.
09-15-2013, 02:10 AM   #322
Rhea george
 
Join Date: Feb 2013
Location: Trivandrum, India

My Support Groups:
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.
09-21-2013, 01:04 PM   #323
Sailorluna
Forum Monitor
 
Sailorluna's Avatar
 
Join Date: Oct 2010
Location: Coon Rapids, Minnesota

My Support Groups:
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
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
09-21-2013, 01:17 PM   #324
BlessingsK
 
BlessingsK's Avatar
 
Join Date: Aug 2013
Location: Austin, Texas

My Support Groups:
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.
09-21-2013, 01:44 PM   #325
Essieluv
Senior Member
 
Essieluv's Avatar
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. Itís slightly painful. But Iím more worried about the bleeding. Itís not a lot but Iím bleeding almost all the time. Itís only been a day. But can anyone tell me if its normal to bleed ? Thanks a lot.
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
10-06-2013, 02:16 PM   #326
5cents
 
Join Date: Oct 2013
Location: cleveland, Ohio

My Support Groups:
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
10-06-2013, 10:09 PM   #327
KarlieK
 
Join Date: Oct 2013
Location: colorado springs, Colorado

My Support Groups:
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!
10-06-2013, 10:38 PM   #328
BlessingsK
 
BlessingsK's Avatar
 
Join Date: Aug 2013
Location: Austin, Texas

My Support Groups:
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...
10-07-2013, 11:01 AM   #329
KarlieK
 
Join Date: Oct 2013
Location: colorado springs, Colorado

My Support Groups:
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.
10-19-2013, 12:56 PM   #330
igrik1986
 
Join Date: Sep 2013
Location: asdf, Croatia

My Support Groups:
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.
__________________
Anal Fissure Support Forum - Anal-Fissure.org
07.02.2013 - got open hemorrhoidectomy, leaded to slow healing wound. Link to story

Last edited by igrik1986; 10-19-2013 at 01:22 PM.
Reply

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


All times are GMT -5. The time now is 01:05 PM.
Copyright 2006-2017 Crohnsforum.com