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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Abscess> fistula> aborted Lift>Seton> what next?



06-02-2017, 09:18 AM   #1
Ross
 
Join Date: Jun 2017
Abscess> fistula> aborted Lift>Seton> what next?

Hi all,
I found out i had an abscess when i had unexplained high fever, chills and a lump in my backside appearedon wed/thurs in feb17.
I went to gp who gave me AB so spent weekend in pain to return to gp again monday. This time she recognised this as not good refering me to a CRdr who was available that afternoon. Went along not knowing what to expect, and after 2 mins told prepare for operation. The absecess was the size of a fist and was amazed i could stand the pain ( i couldnt so was happy to get anything done).
Was whisked in to surgery and had as i now know a loop drainage. 2 wks at home and constant loop rotating cleaned out the abscess after 4wks.
Then the touble started. Removal of the loop allowed everything to settle but one of the holes stayed open. This moved to a weekly cycle of leaking, closing over filling up, bursting, repeat.
Back to the CR to be told a fistula had formed and next step was to let the system stabilize before next step.
May17 had MRI which revealed a convoluted routing of the fistula.
A plan was set to do a LIFT. Booked in end May to hospital and read up about it and waited. Checked in hospital, into operating table, and knocked out.
I then woken up thinking this doesnt feel so bad only to be told they inspected the site and the internal hole was too big so LIFT surgery was aborted and a seton was put in place.🙁
I feel failure was snatched from the jaws of success( or hope anyway) abd has set me back mentally and physically. Returned from hospital depressed and stomach muscles in knots.
So disappointed as was mentally prepared for the pain and the progress to rid myself of this. The concern the hole was too big and if i had crohns lift or flap may not hold. Not sure i have been told whole story.
So now i wait for test results to confirm if crohns is a factor. Told that advancement flap is likely more appropriate or life with a seton as an alternative.

Is the flap surgery as bad as it seems?
Should i just live with the seton?
Any other alternatives?
Any advice/ discussion welcome.
Sorry for the long story but feel sharing with others who know even helps, as dont feel comfortable telling colleagues or friends the whole story which is becoming a burden.
06-02-2017, 09:26 AM   #2
Sorebutt26
Senior Member
 
Join Date: Apr 2017
Location: United Kingdom
Hi all,
I found out i had an abscess when i had unexplained high fever, chills and a lump in my backside appearedon wed/thurs in feb17.
I went to gp who gave me AB so spent weekend in pain to return to gp again monday. This time she recognised this as not good refering me to a CRdr who was available that afternoon. Went along not knowing what to expect, and after 2 mins told prepare for operation. The absecess was the size of a fist and was amazed i could stand the pain ( i couldnt so was happy to get anything done).
Was whisked in to surgery and had as i now know a loop drainage. 2 wks at home and constant loop rotating cleaned out the abscess after 4wks.
Then the touble started. Removal of the loop allowed everything to settle but one of the holes stayed open. This moved to a weekly cycle of leaking, closing over filling up, bursting, repeat.
Back to the CR to be told a fistula had formed and next step was to let the system stabilize before next step.
May17 had MRI which revealed a convoluted routing of the fistula.
A plan was set to do a LIFT. Booked in end May to hospital and read up about it and waited. Checked in hospital, into operating table, and knocked out.
I then woken up thinking this doesnt feel so bad only to be told they inspected the site and the internal hole was too big so LIFT surgery was aborted and a seton was put in place.🙁
I feel failure was snatched from the jaws of success( or hope anyway) abd has set me back mentally and physically. Returned from hospital depressed and stomach muscles in knots.
So disappointed as was mentally prepared for the pain and the progress to rid myself of this. The concern the hole was too big and if i had crohns lift or flap may not hold. Not sure i have been told whole story.
So now i wait for test results to confirm if crohns is a factor. Told that advancement flap is likely more appropriate or life with a seton as an alternative.

Is the flap surgery as bad as it seems?
Should i just live with the seton?
Any other alternatives?
Any advice/ discussion welcome.
Sorry for the long story but feel sharing with others who know even helps, as dont feel comfortable telling colleagues or friends the whole story which is becoming a burden.
Sorry to read this Ross. Sorry you're struggling too

My story is similar in the fact of surgery was planned and then they realised my fistula was too complex so living with a seton currently. Having investigations for Crohn's. If it's not Crohn's then this will mean a life with a seton for me. If it is Crohn's, then medication will start.

06-03-2017, 08:05 PM   #3
Ihatefistulas
 
Join Date: Oct 2016
Hi Ross,

Sorry to hear you were so close to an operation you thought would be the end of it, only to wake up to a different result. I have struggled with Fistulising Crohn's for about 6 years and have found the hardest part is often dealing with setbacks, especially when things appear to be heading in the right direction. If you can, try to see this as not a failing, but simply an opportunity to take a step back and confirm that Crohn's Disease is not involved, before determining the best course of action, which will ultimately give you the best possible outcome.

The problem with any surgery regarding Perianal Fistulas is achieving successful closure and also ensuring that continence is not compromised. Your surgeon likely halted the procedure once he saw that the hole was larger than expected and this likely reduced the chances of successful closure to a level that made this surgery less viable than other alternatives, such as the advancement flap surgery. The fact that the hole was bigger than expected has also likely made him decide to investigate the possibility of Crohn's disease as the underlying cause of the formation of the abscess and the reason the fistula formed and has not closed. This is not to say that you have Crohn's Disease, as it is my understanding that 50% of all abscesses will result in a fistula (so Crohn's Disease is not the only reason for a fistula tract forming).

Should Crohn's Disease be the underlying issue, this does not mean necessarily that your only option is to live with the seton, as I understand it, most if not all options are still on the table, as long as the Crohn's Disease is being managed well.

From personal experience, at this point I would avoid looking at "what is the best final step" eg "should I just live with the seton?". This is not to say don't read up on the options, but for you at this stage it is far too early to even determine if this is a decision you will need to make let alone if it is the right decision for you.

With the seton in place, hopefully the abscess and fistula will remain settled and this will prevent the possibility of a blockage or further complications. Without the seton their is a higher risk that if a blockage occured, another tract could form or their could be further damage leading to increased scar tissue.

For me it has only been in the last 6 months that I have started to head towards what I hope will be remission, I currently have 2 setons in situ, but have previously had up to 3, my disease has been extremely active for the last 5 1/2 years to the point that it has been very life altering, but with my latest visit to my colorectal surgeon he has still assured me that if I can achieve and maintain remission that their will be options available to try to close the current fistulas, so certainly don't discount options at this stage.

Your key questions at this point needs to be, do you have Crohn's, and if you do what is the best approach to achieving and maintaining remission? Unfortunately finding out if you have Crohn's is not as simple as having a blood test. It took nearly 12 months for me to be diagnosed with Crohn's Disease, even though my disease was clearly very active at the time (for example my first seton placement was meant to be day surgery, but turned into 14 days in hospital on IV antibiotics and 3 surgeries and I eventually left the hospital with 3 setons, and even then the abscess and surrounding tissue remained indurated and the setons regularly blocked.

If I could go back in time, I would tell myself to keep a symptom diary, take photos, butt shots, yes I said it, photo's of the wound, even toilet photo's and dressing photo's if needed, how many times you went to the toilet and what it was on the Bristol Stool Chart (yes their actually is such a thing as a feacal chart), was their any blood. I am not suggesting these form part of your Christmas cards, but it will help your Gastroenterologist determine what is going on, and if it is Crohn's related. Trust me, you will not shock you Gastroenterologist or colorectal surgeon with anything you tell them or show them. Obviously don't leave these photo's on your phone. Be as modest as you want to your friends and family(even after 6 years many of my friends do not know much about my condition), but hide nothing from your GP, and specialists. One of the best thing that happened to me, was my first surgeries were in a training hospital (you soon loose your embarrassment and modesty around your condition when their are 8 training doctors around your bed and your specialist asks if it is OK for them to take a look. At the end of the day, they can only help if they know what your symptoms are and your condition, and as they only see you for a brief period, photos, and a diary are often the best way to show them how you have been between visits.

My other advice regarding the fistula and the seton is make sure you keep the area clean and have regular sits baths, this will certainly help in healing. Before you have any further surgeries, I would also recommend a second opinion. Your specialist should have no issues with you seeking a second opinion and if they do, then I would recommend finding a new specialist. If you are diagnosed with Crohn's see if their is a Colorectal Surgeon in your area that tends to specialise in dealing with Crohn's patients, as IMO is a specialty within a specialty. I nearly had a 'temporary' surgery, after getting a second opinion from a well respected specialist in crohn's (I had to travel interstate to see him), I found out in my current situation, it would have likely been unsuccessful at settling the abscess and may have needed to be made permanent.

Lastly as this condition is difficult to discuss openly with friends and family, if you are getting stressed (and this is perfectly acceptable as you are in a stressful situation), don't be concerned about talking with a councilor. In Australia this is a free service if you speak with your GP. I have taken this option about 3 times over the last 6 years, just for a few sessions, it's not like the movies where you have to talk about your childhood etc, I was simply able to vent my frustrations and think through my problems in a safe and judgement free environment, and more importantly I was given systems to manage and control stress. Obviously, as you have already found the forums are also a great place.

I wish you all the best,

Cameron

P.S. I just read my reply and boy did I go on...it was like I was writing a novel, I also worry that it comes across as somewhat condescending, this is certainly not the intent, so I hope when you read it, it does not come across that way
06-05-2017, 09:27 AM   #4
Ross
 
Join Date: Jun 2017
Hi Carmeron,
I cant thank you enough for your kind words, i needed a good talking to!

I reflected on your advice and story and it has helped me realign my understanding of the condition and the disappointment i had coming away from hospital. I was angry with the (lack of) progress but now feel more collected and focused on discussing and realigning the next steps.
I was looking for a quick fix and perhaps was "sold on" or believed one more op will return me to pre abscess "normality". However in really it is a much missunderstood issue with "cures" not progressed much since medieval days- cut it out and hope for the best.
From your advice i have re-started Sitz baths twice a day and will record/ document progress between visits.

Thanks again,
Ross
06-05-2017, 08:21 PM   #5
Ihatefistulas
 
Join Date: Oct 2016
Hi Carmeron,
I cant thank you enough for your kind words, i needed a good talking to!

I reflected on your advice and story and it has helped me realign my understanding of the condition and the disappointment i had coming away from hospital. I was angry with the (lack of) progress but now feel more collected and focused on discussing and realigning the next steps.
I was looking for a quick fix and perhaps was "sold on" or believed one more op will return me to pre abscess "normality". However in really it is a much missunderstood issue with "cures" not progressed much since medieval days- cut it out and hope for the best.
From your advice i have re-started Sitz baths twice a day and will record/ document progress between visits.

Thanks again,
Ross
Ross,

I'm glad you got something out of my reply, I hope to help others when I can, as I have received so much help myself from people on the forums.

Your story resonated with me, as I feel a lot of what you described I also went through initially. My first GP put me on antibiotics, then a second course as the abscess grew and grew, I finally saw another GP who sent me to ER. I was told after the first surgery I should be back to work in 6 weeks. Many times since I have either been given (or created my own), what turned out to be unrealistic expectations.

Often I have fallen hard when things have not gone according to plan, and it has been hard to get back up and dust myself off, it's very tempting just to give up and stay down, and to be honest there are times when for a while I have. It is important to get back up as quickly as you can though, so you can focus on the things that you can control at that point to improve future outcomes.

I try never to loose the optimism I have, I think it is something we need to have, but I have also learned to show up on the day to run the 100m sprint, but bring a change of shoes in case it becomes a marathon.

I don't mean to suggest in any way that your race will be a long one, a lot of people with fistulas have them close quickly and never return, and I hope you will be one of them. The problem with googling for people's experiences with fistulas is that those who have a quick recovery simply move on with their lives, so you are unlikely to find many posts of quick outcomes.

To short races, I hope to see you all at the finish line soon!

Cheers,

Cameron
07-09-2017, 11:09 PM   #6
Ross
 
Join Date: Jun 2017
Update on progress.
In May i had a Seton inserted. It took a few weeks to get used to it.
Last week- i had the flap advancement op done which cut out the skin to the sphinter muscle and the fistula tract which was scrapped out, a stitch was put in the muscle, then the skin graft was cut from outside pulled inside and then stitched internally in place.
The first day the pain was off the scale, the muscle was also in spasm.
With all the drugs i did not sleep at all over night. Went home next morning and have been resting since.
After 3-4 days pain has greatly reduced so have been reducing the pain meds. Lying down and sleeping for most part.
Dr said not to eat any fibre in diet- low residue diet- to try and avoid/ delay going to toilet. This has so far been successful for 4 days. Dont know how long i can avoid going, and likely to be painful when restart, but hope to give the skin some time off to knit together. Not sure how long i need to be off or how long before op can be deemed successful.
09-03-2017, 05:49 AM   #7
Fistulathens
 
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Join Date: Jul 2017

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Hope all is well Ross. How did it go for you?
09-03-2017, 08:57 PM   #8
Ross
 
Join Date: Jun 2017
Hi, i had a busy time of it.
Soon after the post about 7 days after the flap advancement i started to feel unwell-fever- and so went back to the specialist.
She was quite concerned and said that a EUA was required which they booked in that evening. Just as well, as she discovered the flap edge had gone necrotic and pussing! so had to undo the stitches clean out the area, cut out the dead skin and restitch it all up!
When i came round i was in high pain and ended up staying 2 nights in hospital with iv painkillers and antibiotics. This time no solid food for a week so was weak from no real food and most pain, this was a tough week. Hot baths were the best thing to ease the pain, that and the oxynorm.
After a week i felt much better but could not sit down on anything other than a soft sofa. By end of second week was more myself ,back to normal except had to be cautious sitting for amy time period.
The third week I went back to work with a cushion and had a hot bath every night.
The fistula hole closed over and stayed closed and the tract feels "empty".
There was still mild bleeding for a further 2-3 weeks but this slowed up and i could sit longer and longer without discomfort.
The hole from the skin graft also healed over ok in this period and now wait a check up 8 wks after the second op so am quite optimistic at this time as i pass the 6 month mark since getting the abscess.
The most difficult time physically and mentally was the first 1-2 wks post operation when all the holes are "raw" and doing anything was difficult but once through this period i felt better as every week went by.
09-04-2017, 03:56 AM   #9
Fistulathens
 
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Join Date: Jul 2017

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Well done Ross!!! really happy for you mate! Dimitri
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