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



 
04-13-2017, 06:37 PM   #1741
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi Harper,

I was told to use lactulose as directed on the bottle after surgeries. Maybe you could ask your doctor about that. It is a stool softener and it didn't cause me any side effects. I'm not sure about how to reduce the frequency of bm's though. I wish I knew too.


I hope you find a solution,

cmack
04-14-2017, 06:12 AM   #1742
Harper05
 
Harper05's Avatar
 
Join Date: May 2014

My Support Groups:
Can I not be able to fully go because I'm so swollen? S
04-14-2017, 02:58 PM   #1743
Harper05
 
Harper05's Avatar
 
Join Date: May 2014

My Support Groups:
ok, so I got a second opinion today and this surgeon thinks the first surgeon might not have cut deep enough and that's why I still have the fissure and he thinks if I don't feel better in a week I should do another synphcteromty on the other side.... welp.. I don't know what to do, has anyone experienced this?
04-15-2017, 01:51 PM   #1744
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi, Harper,

I have had similar problems before. They probably missed something the first time. I do think swelling could be a factor.

I'm hoping the best for you, keep in touch

cmack
04-15-2017, 03:12 PM   #1745
Harper05
 
Harper05's Avatar
 
Join Date: May 2014

My Support Groups:
Hi, Harper,

I have had similar problems before. They probably missed something the first time. I do think swelling could be a factor.

I'm hoping the best for you, keep in touch

cmack

Did you have to get the surgery again? I'm wondering if eventually I'll heal in my own without the surgery... again....
04-15-2017, 04:40 PM   #1746
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi Harper,

It might heal, I certainly hope it does. I would have it monitored just in case though. You can never be too careful with these things, they can really turn wicked in a hurry. Listen to your body, you know it best.


Wishing you good health,

cmack
10-01-2017, 03:33 PM   #1747
Quintonrich
 
Join Date: Oct 2017
Location: Birmingham, United Kingdom

My Support Groups:
Wow, reading some of these posts has really scared Me! I had two abscesses removed on the June 25th this year, I had a 'inspection' at the end of August.
I am virtually pain free except for the occasional twinge and was told that my setons were working but did not tell me for how long they would be staying in for.
Now reading some of the horror (to me) stories feel totally uneasy about my prognosis.

Help.
10-01-2017, 05:34 PM   #1748
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
The setons are only a minor inconvenience compared to more surgery. Mine were in for several years,then I got back to feeling no pain in the area. You will heal, don't be scared, if you do the right things you will feel better.
10-01-2017, 08:31 PM   #1749
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi Quintonrich,

Welcome, you can pm me any time or talk on this thread. I enjoy talking with people like you. Been down the same road, maybe I can help you out a bit.

Kind regards,

Chris
10-09-2017, 06:15 PM   #1750
LemSat87
 
LemSat87's Avatar
 
Join Date: Jan 2014
Location: Voorhees, New Jersey

My Support Groups:
The setons are only a minor inconvenience compared to more surgery. Mine were in for several years,then I got back to feeling no pain in the area. You will heal, don't be scared, if you do the right things you will feel better.
Did you really have your setons in for several years?! I've had 1 in since February and then had 2 more put in in May of this year...I want them out...please don't say years
__________________
Diagnosed with Crohns Disease in January 2012.

Colon Perforated March 2013, total of 3 feet of intestine removed and temp ileostomy placed.
ileostomy take down March 2014
Hernia repair June 2015 in surgical area from 2 prior surgeries
Perianal abscess found Feb 2017 with subsequent fistula discovery & seton placement March 2017 w/2 additional seton drains placed May 2017
Have surgery pending to remove gallbladder & repair hernia along a prior surgical site.
10-09-2017, 07:19 PM   #1751
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Sometimes it is less time than that. I think it really depends how deep they are and how long the fistula tract is. Also if they are cutting setons or regular smooth ones. I got through it, you will too. It just sucks for the short term. (relatively speaking, I know it seems like forever right now) I understand.
11-07-2017, 01:47 PM   #1752
redheadtn
 
Join Date: Nov 2017

My Support Groups:
I am having surgery to remove multiple fistulas in stomach and small and large intestine next week. Surgeon said to expect temporary Ostomy for about 6 weeks due to tissue damage from long term prednisone use. Anybody have advice? I am getting really nervous.
11-07-2017, 02:20 PM   #1753
Quintonrich
 
Join Date: Oct 2017
Location: Birmingham, United Kingdom

My Support Groups:
Last Saturday I had further surgery after being examined, the plan was to have the setons out and the fistula's (I have a branch) exposed. My surgeon would only remove one as he was not prepared to risk any sphincter damage. End result is, I have one exposed fistula and a new tighter seton with a planned further procedure later.
Seems to be going OK, with very little leakage and virtually no pain.
11-09-2017, 08:15 PM   #1754
s.a.m.
Senior Member
 
s.a.m.'s Avatar
 
Join Date: Jul 2008
Location: Alberta
Did you really have your setons in for several years?! I've had 1 in since February and then had 2 more put in in May of this year...I want them out...please don't say years
I've had Setons in since 2011/2013. Eventually, you kind of forget they're in 😬 I prefer the Seton to all the abscessing 🙂
11-09-2017, 08:21 PM   #1755
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
I've had Setons in since 2011/2013. Eventually, you kind of forget they're in 😬 I prefer the Seton to all the abscessing 🙂
I agree, it at least allows you to stay at home or be able to work. It also minimizes damage from further abscesses and fistulas.
11-10-2017, 08:09 PM   #1756
lgpcarter
Senior Member
 
Join Date: Jun 2013
Location: Canada

My Support Groups:
I am having surgery to remove multiple fistulas in stomach and small and large intestine next week. Surgeon said to expect temporary Ostomy for about 6 weeks due to tissue damage from long term prednisone use. Anybody have advice? I am getting really nervous.
No advice, just support. You will likely get more response on the ostomy thread. Hope everything goes okay!
__________________
Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Humira, Entyvio every 4 weeks, Levofloxacin 750 mg, Vitamin D

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran
11-11-2017, 07:23 AM   #1757
Rainbowchaser
 
Join Date: Oct 2017
Location: Alaska
Good luck with your surgery 😊. I know feeling scared and nervous is hard on top of whatís happening but you will get through it. You are not alone *hugs* 😊
11-12-2017, 05:35 PM   #1758
Starnett
 
Starnett's Avatar
 
Join Date: Mar 2016
Location: Preston, United Kingdom

My Support Groups:
Hi everyone.

Is been a while since I have posted on here but I was hoping for some advice and reassurance I suppose.

I have had a fistula in ano for 18 months now, which developed from a peiranal abscess three months before that. After what feels like an age waiting for some kind of answer about treatment, I have a surgery date for a week next Tuesday.

This has left me with mixed feelings. Having lived with this condition now for so long, it has almost become a part of me and Iíve gotten used to dealing with it if that makes sense. I have a pretty predictable cycle of going for about 4 weeks with mild drainage with some minor pain, then Iíll have a flare where the opening heals and it swells causing uncomfortable pain for about 24hrs. It then opens again and the cycle continues.

I have pain medication to reduce the pain when needed and my medication to control my IBS has been working great recently. Iíve identified some further trigger foods and have reduced / eliminated these and Iíve felt a bit better with my bowel health as a result. As mentioned in my previous posts, all the tests performed for Crohns, IBD etc came back negative.

Sorry for the long post but this is what has me worried. I have been advised that surgery is the best and only option to achieve healing of the fistula. My surgeon said it is a simple fistula and has advised I take a minimum of 2 weeks off work to allow for some recovery before returning to work. I am a Teaching assistant who works with children with SEN. I have been stupid enough to be doing lots of research online and itís getting me worried as lots of people seem to have very long and complicated recoveries, some not healing at all. I do understand that healing can be more difficult for people with Crohns or IBD so I may be reading too much into it. It just scares me the though of having surgery and endeing up worse off.

Iím not sure what Iím asking really, just feel very nervous about the whole thing and donít want to go ahead with this if it could create more issues than it solves. Is it risky to not have a fistula operated on?

Thanks so much for reading and for any advice you can offer.

Andy

Last edited by Starnett; 11-12-2017 at 06:20 PM.
11-12-2017, 08:39 PM   #1759
Quintonrich
 
Join Date: Oct 2017
Location: Birmingham, United Kingdom

My Support Groups:
Hi Andy,
It's all according where the fistula is positioned, if it's too close to the sphincter as in my case I had two setons inserted. That was June this year, last weekend I had one seton removed because one of my two fistula's had healed enough for it to safely be layed open to heal. The second could not be risked and will be re-examined in eight weeks.
I have now had three surgical procedures, after a couple of days on pain killers am OK, but I do have a couple of weeks off work.
Hope this helps
Richard.
11-12-2017, 08:47 PM   #1760
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi Andy,

I have had several, like 14 surgeries for abscesses/fistulas. What finally got me healed was having a cutting seton placed by a colorectal surgeon. I wish you the very best. I think you could rest assured that they won't make things worse. Be sure to discuss this with your surgeon and tell him if it is too risky to err on the side of caution. That's what I did.


Finest regards,

Chris
11-28-2017, 07:03 AM   #1761
Starnett
 
Starnett's Avatar
 
Join Date: Mar 2016
Location: Preston, United Kingdom

My Support Groups:
Hi,

Just a quick update. Post surgery now, partial lay open with seton placement was the result. 1 week post op and still feeling lots of pain and discomfort. Canít quite imagine being back in work in a weeks time. Will have to see how things are by this weekend I think then reevaluate if needed.

I guess everyoneís healing times are different. Most of the discomfort comes during and after using the toilet which I suppose should be expected.

Hope everyone is well

Andy
11-28-2017, 09:57 AM   #1762
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Hi,

Just a quick update. Post surgery now, partial lay open with seton placement was the result. 1 week post op and still feeling lots of pain and discomfort. Canít quite imagine being back in work in a weeks time. Will have to see how things are by this weekend I think then reevaluate if needed.

I guess everyoneís healing times are different. Most of the discomfort comes during and after using the toilet which I suppose should be expected.

Hope everyone is well

Andy
Best to you

__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-28-2017, 03:00 PM   #1763
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi,

Just a quick update. Post surgery now, partial lay open with seton placement was the result. 1 week post op and still feeling lots of pain and discomfort. Canít quite imagine being back in work in a weeks time. Will have to see how things are by this weekend I think then reevaluate if needed.

I guess everyoneís healing times are different. Most of the discomfort comes during and after using the toilet which I suppose should be expected.

Hope everyone is well

Andy
Good to hear from you Andy,

The worst part is over. I hope things go easy for you, if not, feel free to ask anything you like. I have had some experience with all different setons.


Feel better soon,

Chris
11-28-2017, 06:43 PM   #1764
Starnett
 
Starnett's Avatar
 
Join Date: Mar 2016
Location: Preston, United Kingdom

My Support Groups:
Thanks Chris

I'm still struggling with the pain despite taking pain relief. Thought it had started to ease off but tonight it has gotten very sore and sensitive again. The Seton hurts the area if I touch it. Is this normal a week after surgery. Like I say my GP says everything looked ok today but it doesn't feel ok.

I'm not sure what type of Seton I have either so will have to call the hospital tomorrow to find out I think. My CRS said that it may fall out of its own accord before my 6 week post op appointment but that's seems wrong to me from what others have posted. Though he did say another procedure may be needed depending on healing at that point.

Feeling a bit stressed about the whole thing as I want expecting to have to deal with a Seton.
11-28-2017, 09:01 PM   #1765
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Yes it is normal to still be in pain, *however. *You need to make sure you have enough pain medication. It will be sore for a while longer, although things should start getting better pain wise very soon. It's a sensitive area. It will be less painful and less noticeable, each day for a while. I used lidocaine jelly and it numbed it too.
11-29-2017, 11:48 PM   #1766
GypsyLooo
 
Join Date: Nov 2017
Location: Cincinnati, Ohio

My Support Groups:
Hi all, I recently had a seton placement for what turned out to be a mid to high perianal fistula ... started as a bad abscess almost 4 years ago that kept returning. Actually went away for a year, but then got so bad they sent me to a gen surgeon to have it lanced. Went down like by half but not away. All the guy ever told me was it might return but there was really nothing they can do about them and to just deal with it... seriously. So, next year and half swelling up and down and then gone again until recently wound up in er worried about dying from an infection. Thought they'd just lance again, but instead insisted on getting permission from my doc... the surgeon i saw once to lance and once for followup. He told them to do nothing and send me home with pain meds and to make an appt with him asap. I said fine. Left er and called his office. He couldn't see me for 5 days! Gave me appt with diff gen surgeon 2 days sooner. Took it. He said was a fistula and fistulatomy would be simple no problem. Was a weightloss specialist. I thought it over decided to ask for another opinion from colo-rectal specialist. She recommended seton placement for drainage then eventual fistulatomy. Had the seton procedure. The placement of the knot (tie) drove me nuts, the end was poking my anus no matter how i wrapped it up, till it loosened up, finally seeming to drain. 2 week followup with nurse practioner who told me the surgeon wouldn't even have put a seton in if fistulatomy was at all possible. She said seton means it's high up and fistulatomy would make me incontinent. I cried cause my surgeon told me the other procedures are all unreliable and that incontinence would be minimal. The woman kept arguing with me. Finally saw my surgeon again a month later (feeling a small painful infected feeling lump at the fistula opening, and that morning i notice what feels like another abscess stemming from it going to my other cheek!) The surgeon says what the nurse pract. told me was wrong and, again, only fistulatomy will work and eventho higher up, incontinence will be minimal. Puts me on Cipro and metrosomethingorother for the infection says doesn't think the new abscess is anything, but it feels as bad as the old one. Long story... I'm really sorry. I'm really feeling scared and also having diarrhea from the Cipro. It also seems that this infection comes whenever i have a bout of diarrhea! Like its getting into the fistula and not draining, no matter how well i clean it or soak in the tub and change the gauze dressing everytime i use the bathroom. I'm having extreme anxiety over this, and so angry that it just seems to get worse. Also petrified now of Cipro side effects. I haven't been diagnosed with crohns or aything? I have had what i call "stomach issues" forever though. Periods where i take several Tums a day and some strange allergies. Thought i was allergic to eggs for years, turned out it was sulfur, so garlic and certain veg i CANNOT digest and really make me sick. Seems i get crazier everyday about what i can and can't eat. This whole thing is just making me crazy.
11-29-2017, 11:55 PM   #1767
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
It will get better. Do your best to tell someone on the medical team about your frustrations. I hope everything keeps draining. Hang in there.
11-30-2017, 12:17 AM   #1768
cmack
Forum Monitor
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Setons that are placed high always bothered me most, they do become easier over time though. I really feel for you I had a similar experience.
11-30-2017, 12:21 AM   #1769
GypsyLooo
 
Join Date: Nov 2017
Location: Cincinnati, Ohio

My Support Groups:
Setons that are placed high always bothered me most, they do become easier over time though. I really feel for you I had a similar experience.
Thanks. I really needed this forum tonight. Glad i found it.
11-30-2017, 01:25 AM   #1770
Starnett
 
Starnett's Avatar
 
Join Date: Mar 2016
Location: Preston, United Kingdom

My Support Groups:
Hi GypsyLooo

Sorry to hear about everything you are going through. It is such a horrid thing to deal with and it's so hard as you feel there is nobody to really talk to as nobody talks about 'that place'.

I've actually had to start getting pretty blunt with family about it. Not rude or anything but just had to explain the facts clearly so they understand what you are dealing with.

You do feel like it will never end but it must get better. I know this because so many nice people on here have told me so as they have been though it too. So it will get better

In other news for me, my Seton actually came out last night. Got to speak to the hospital today to find out if I need another inserting. I'm trying to see the funny side to it all if I can. Being so near to Christmas, do you think my surgeon would agree to attaching some small jingle bells to a new seton so I don't lose it?

Andy
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 01:33 PM.
Copyright 2006-2017 Crohnsforum.com