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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » A newbie to this nightmare! Advice welcome x



 
06-16-2014, 12:24 PM   #1
Sazzle
 
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A newbie to this nightmare! Advice welcome x

Hi all
Fabulous site that is already becoming my best friend through this nightmare...

To cut a long story short, about 3 months ago I discovered a hard lump in the cheek of my bum, nearing the crack of my bottom...... I had spent a week finding it uncomfy to sit, so asked my partner to peek but he couldn't see anything, but I could feel it if I pressed hard enough...

So went to docs, he said it was a gluteal abscess...antibiotics for 3 weeks..... He then sent me to A&E to have it operated on as he felt it was getting too close to my "poo pipe"
The surgeon wouldn't operate as it wasn't an incision and drainage scenario.... I went back home.

2 weeks ago I had an MRI to see what was going on.....

In the past week or so, the abscess has risen more to the surface, so I stupidly was hoping they were going to say, pop back for an I&D and it will be sorted!

No..... I got the results today via my doctor - I have the abscess as well as a fistula.....
I now have to await my outpatients appointment to discuss surgery options.

Can anyone enlighten me on the procedure? Recovery? Pain? Time in hosp etc etc?

I'm also confused as I have no symptoms from the fistula...... Only the abscess pain....

I'm confused why I have them, going by the "usual" causes........They have not connected this to Crohns or IBS, so I'm not sure why I have them. I'm very hygienic and don't ( how do I put it ) have anal sex etc

I feel my head is confused, I'm so emotional today.

XX
06-16-2014, 01:06 PM   #2
DJW
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Hi Sazzle and welcome. I'm sorry you're going through this mess. Finding the reason for the fistula is important.

I'm only familiar with IBD related fistulas. They occurs often in crohn's disease because inflammation goes through the entire thickness of the bowel. It can lead to abscesses and fistulas.

Sending you my support and hope for answers.
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06-16-2014, 01:24 PM   #3
Sazzle
 
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Thanks for the welcome.
I believe they are looking into IBS, but it all seems so vague at present. I'm guessing they will investigate more after the removal? XX
06-16-2014, 01:26 PM   #4
Cookie
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Hi Sazzle,

Sorry to hear of your troubles with fistula...they are no fun.

There are several different surgery options for fistula, so the answers to your questions are really going to depend on what you surgeon recommends. I believe that the most common treatment is a seton, which basically is like a piece of string inserted in the fistula to keep it from closing and forming an abscess. I have never had a seton, but I believe it is an outpatient surgery.
I have had two advancement flap surgeries. These are surgeries performed for complex fistula that also have abscesses on the side. They clean everything out and take a piece of your own skin, reinforce it with aloe and cover it over the internal opening to the fistula to keep stool and other foreign matter out. This allows the fistula tract to heal. This surgery will only be performed if there is no evidence of active Crohn's. It is also an out patient surgery, but generally requires two weeks of recovery time with minimal activity (leave from work). There is some risk to damaging or weakening the sphincter muscles, so many surgeons do not like to choose this option.

Generally speaking, abscesses cause a lot of pain due to the swelling and inflammation associated with them. Fistula rarely cause pain because they constantly drain. Most fistula start as abscesses and become fistula either naturally or through I&D. Sometimes a fistula tract will develop an abscess sort of like an offshoot. This is what is referred to as a complex fistula. That is what I had both times I had my flap surgeries.

I know this doesn't tell you everything, but I hope it answers some of your questions. You may want to use the search option and have a poke around the fistulas and fissures forum. There is a lot of information to be found there.

Good luck and keep us posted on what you find out.
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Diagnosis: 2003, Crohn's colitis, peri-anal Crohn's
Current meds: Remicade, Imuran, Prednisone (tapering)
Previous meds: Cipro, Flagyl, Canasa, Asacol, Lialda, nitroglycerin (topical for fissure)
Surgeries: 2 flap advancement surgeries for complex fistula
06-16-2014, 01:58 PM   #5
Sazzle
 
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Hi Cookie
That's a great help, thank you.
I have an abscess that ( if this makes sense ) adjoins my "poo pipe" via the fistula..... I think that's how they explained it.
I got home and forgot half what they said as I was a bit shocked.

I will have a good nose through the forum, thanks again!
XX
06-16-2014, 05:46 PM   #6
Sailorluna
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Hi Sazzle, do you have Crohns or UC? You said they did not connect it as the cause but do you actually have either? It is possible to get these without having either.
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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
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06-17-2014, 12:51 AM   #7
Sazzle
 
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Hi Luna
I've never been diagnosed with either. They looked into Crohns a while back when my bowel habits were playing up and I was getting really bad pelvic pain, but they ruled it out. They have mentioned looking into whether I have IBS, but not mentioned UC...
I am very overweight and they said this could be a factor, although I'm not obese.

XX
06-17-2014, 10:34 PM   #8
smallfry
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Hi Sazzle,

So sorry to hear you are going through this. I know it is hard when you don't know the main cause of things. Hope they get to the bottom of it for you soon!

I know you are new to all this and just wanted to clarify you using the term IBS (Irritable bowel syndrome) and wonder if you mean IBD (inflammatory bowel disease). IBS and IBD are two different things. There are many forms of IBD but Crohn's Disease and Ulcerative Colitis are the most common.
I would not think that an abscess/fistula would be caused by IBS. But could be caused by IBD. I would ask them to check for Crohn's Disease or Ulcerative Colitis even if it is to rule them out. Just because you got an abscess/fistula does not mean that you are not clean... you did not ask for any of this so don't try and blame yourself. Try and hang in there while things get figured out. Message me anytime you need to vent or chat!!

so for procedures... most of mine have been done through a day procedure and under general anesthetic. They either just slice and drain or place a seton from my experience. How long a seton stays in depends on how long the tract drains. Everyone's healing time is different.

All the best to you!
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Crohn's disease since 2001
abscessing/fistula since 2006
seton placement for 8 months
4 cases of crohn's related iritis


Diverting Loop Ileostomy Sept.19 2012
Proctocolectomy April 16th, 2014 and off all major meds

Meds
Past - asacol, prednisone, imuran, Remicade from 2001-2008, flagyl, cipro, Humira 2011-2013, 10 months of IV meropenem
Current - T3's, prozac, clonazepam, probiotics, caltrate plus, multivitamin, vitamin D
06-19-2014, 02:34 PM   #9
Sazzle
 
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Thanks Smallfry!
Sorry for a late reply but I've just come out of hospital - everything happened so fast! On Tuesday morning the Abscess was prominently out... Off to work I went. A 60 minute drive away.... On arrival there I got out the car and burst into tears with pain it was unbearable.... I went into work, said I was going straight back home, grabbed a cushion to sit on , rang my GP who said go straight to A&E (also rang hubby to meet me at home) and off I went home...hubby took me to A&E ( I actually drive there as I was too scared to get out the drivers seat of my car as I didn't want the pain again)
They explained the abscess had a black head which was a sign it's ready to pop or be drained...so they kept me in, by now it was about 8pm and they arranged to operate at 11am Wednesday morning. . Went on IV antibiotics and painkillers but couldn't sleep...at 5am the Abscess started bleeding , which relieved some of the nightmare pain....
Went for op at 11am as planned..didn't even wake up properly until 7pm! Nice sleep!!
They kept me in last night too as I was too sleepy/dizzy to come home...

Before I knew it, it was 9am this morning and the surgeon had come to tell me what occurred -
"Underwent EUA and drainage of the perennial fistula. Will require further EUA when the sepsis has settled to explore the fistula"

Hope that makes sense to some of you ( I'm still trying to get my head around the terminology)

So I was discharged at 2pm today... I have to go to my local nurse every day to get the package changed, for the next few weeks. I will return in 8 weeks for the fistula operation, and to outpatients before then.

The "hole" is 60mm x 30mm and 50mm deep.

My nightmare already is every time I wee the package comes out a bit, no matter how much I hold the dressing.... I can't imagine trying for a poop, infact I'm petrified at the thought.
The wound is obviously open and so close to my bottom hole, I'm scared it will get infected.

I'm so sorry for going on and on, but it's all so new to me.

Nothing was mentioned about any tests for IBD (yes sorry I did get confused) so I'm hoping they will look into the cause when I visit outpatients.

Thankyou all xx
06-20-2014, 06:02 AM   #10
Catherine
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Sazzle

Sound like you have been through a lot.

Have you seen a GI? The treatment plans for a fistula cause by IBD or different to one due to other causes.

http://www.nhs.uk/Conditions/Anal-fi...es/Causes.aspx
http://my.clevelandclinic.org/disord...l_fistula.aspx
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
06-24-2014, 06:22 AM   #11
Sazzle
 
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Sorry for the late reply Catherine,
Yes I've now seen my GI... And have a new appointment to see the consultant as an outpatient to strange the fistula op.
I feel like the whole scenario is taking over my life.

XX
07-06-2014, 01:25 AM   #12
smallfry
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Hey Sazzle,
Was thinking of you wondering how you are doing?
07-06-2014, 08:44 AM   #13
Sazzle
 
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Hi Smallfry,
That's kind of you.

I'm doing ok, still having to see the nurse daily for packing/dressing change on the abscess removal wound. It's heeling slowly, but is getting there, it's still 2" deep, but is gradually getting smaller.

I found out ( via my district nurse notes of all places!) that the fistula I have is called "transsphincteric" I didn't know what type it was, but saw this on their notes.
I have since seen my local doctor ( local doctor. I see the consultant on the 24th July ) who has explained what that means ( basically the fistula tunnel is going from my bowel through my inner and outer sphincter muscles to where the abscess was )

They are now thinking the fistula was there before the abscess, and caused the abscess, that would explain why it was internal for so long before coming to the surface.

I have suffered severe constipation most of my life which could be the cause.

But I'm guessing more will be made clear on the 24th.
However I'm aware of what the future holds reference ops and the outcome of them...... There is a chance they may just make a bypass and I have a stoma bag, but obviously I want to see what other options there are first.

XX
07-25-2014, 11:41 AM   #14
Sazzle
 
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Oh life!!!

Rant Alert!!
I love having the NHS system in the UK, I think we are lucky, but at present I'm thinking that the hospital that is dealing with my abscess/fistula saga is blooming useless!
Rewind 6-7 weeks, I had my op - was discharged with no forwarding appointment, no discharge letter and my meds didn't even have my name or dosage on...

After I became "with it" a day or so after, I rang and asked them to look into it..but they couldn't find my notes and had no idea what surgeon had dealt with me ( went in via A&E so it wasn't my consultant) but asked me to contact my consultants secretary, did so, and she said she would get it sorted and gave me an appointment for 24th a July (yesterday) - for an update and what stage 2 will be...

So off I went, only to be told by the consultant "no one seems to have your notes or any of your MRI results - There's not much I can do until they are found - go home today and I will get them found and I will contact you ASAP with a new appointment!!"
What a bloody waste of time! What a bloody useless system! Surely it's all on the commuter system?!
Have a poxy headache now!

So I'm still no further foreward!
Rant over!!

Hope everyone else is moving foreward xx xx
07-25-2014, 03:06 PM   #15
justbreathe8
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OMG I would be soooo frustrated! Especially after waiting so long to be seen. All you want is answers!! I would keep on them about locating your records, otherwise Im sure they will take their time. How are you feeling besides that? Does it feel like things are healing?
07-25-2014, 03:40 PM   #16
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Hi Justbreath

My abscess no longer needs packing, but still has dressing over it - but the nurse has said that in a week or two my butt can be let free, so to speak.

In myself I feel lost - I'm an organised person, always planning etc, so not to know what's going on, when the fistula op will be, what option they want to take with it etc isn't helping me feel positive to be honest.

From Monday I intend to call the consultants receptionist daily until they have found my notes, or if they can't, then get me in ASAP to rescan and make a decision.

Sazzle xx
07-25-2014, 04:45 PM   #17
justbreathe8
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Yah I totally understand. Well I hope they Find the stuff so you don't have to start from the beginning!
08-04-2014, 12:02 PM   #18
Sazzle
 
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Yayyyyyyyy the hospital notes have miraculously appeared!
They called me this morning and said to expect a letter within the next 2 weeks with the next procedure/op date on - I asked if I would be seen as an outpatient first, but I won't be - so I won't know much until I get the letter.

However, last week I received a copy of the letter the hospital sent my Doctor, it explained about them looking for the notes, but also said after seeing the little info he did have I would be going in to have "EUA and the laying open of fistulas"

So I'm now asking myself...although I don't know the answer ( hoping one of you may!!)

Can Transsphincteric fistulas be "laid open"?
What is "laid open" and what does it involve after?
As he has put fistulaS (plural) in the letter, I'm guessing that's no typo.... I must have more than one! :-( does this make it more of a saga?

XX
08-04-2014, 05:20 PM   #19
justbreathe8
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yay!! Im glad to hear they found the paperwork!! and as far as laid open, I think that means where they cut the fistula and sew down both sides to it lays flat.
08-08-2014, 02:18 AM   #20
Sazzle
 
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So I now have my next op date for the fistula(s) to be sorted ( on my letter it says fistulas, I thought I only had 1?) September 18th.

My concerns ( although I have no idea how these things work!) are surely in this time the fistula is still doing it's thing and has another chance to make another abscess? I have said this to the consultant and he said I will be fine in that short space of time - it will be 3 months since they removed the abscess.......... MRI shows the fistula was present before abscess removal..

The next part I hate mentioning - but I need advice - since my abscess removal my BM have really changed - I've always suffered constipation, but now it's even worse...... Ok here goes, apologies for the details - but yesterday I went ( after about 3 days ) and I felt like I was giving birth out the wrong place! Was so painful, I looked in the loo to check for blood/mucus and saw that my BM was in one piece and without exaggeration was approx 18-20 inches long ( I have taken a photo for my doctor - poor guy!!) and had very little mucus compared to when I usually go. My pelvis and stomach were in so much pain for a good couple of hours after...
Any advice welcome.
Sorry if that was too graphic.

XX
08-08-2014, 02:23 AM   #21
justbreathe8
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Have you ever tried taking stool softeners or miralax to keep you "regular"?
08-08-2014, 08:39 AM   #22
Sazzle
 
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I do have Lactulose stool softener that I take if things get really bad, but I wasn't sure if I could take it daily.
XX
08-08-2014, 08:46 AM   #23
justbreathe8
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Ooh okay, I usually take one when I know ill be drinkin alcohol bc I know it sometimes makes it harder to come out. But I've read on here of people taking it daily, but if ask your doctor first. Or maybe drink prune juice at night and in the morning might help too. Or split pea soup, or lentil soup. Those are natural things that might help your constipation.
08-08-2014, 05:16 PM   #24
Sazzle
 
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Thanks Justbreath
I've tried prune juice often with no luck, but will try the soups! Thankyou
Xx
08-08-2014, 06:25 PM   #25
justbreathe8
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No problem, if you want to PM me your email address I can send you the recipes I have!
08-08-2014, 09:08 PM   #26
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Here's a suggestion that has helped me go more comfortably in the last few months. Try 'squatting' when you are trying to use the toilet by putting your feet on a small step stool in front of you. I find when in this squatting position everything comes out much easier without any straining. Good luck!
08-09-2014, 02:04 AM   #27
Sazzle
 
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I will try that too blackli - thankyou xx
10-08-2014, 06:40 PM   #28
smallfry
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Hey Sazzle, Sorry I missed replying. How have you been doing?
10-09-2014, 03:13 AM   #29
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Hi Smallfry
No need to apologise!

So here's where I'm upto

June 18th 2014 - abscess removed and drained - could not remove fistula as it was "awkward - later found out the fistula is transsphincteric ...
September 18th 2014 - fistula "laid open" but they have only opened it up as far as my sphincter muscle....why? I have no idea!!! I only found this out via the nurses that pack and dress it daily.
I'm still having it packed and dressed daily, it's now only about 2cm deep so hopefully will close within the next couple of weeks.

Im due to see the surgeon soon for an update. So I'm hopefully finding out then what happens next, and hopefully they will start trying to find out what's causing it all. ( my GP and I think it maybe down to years and years of straining through constipation )
I do seem to get a lot more pelvic cramps now than before the operations which concerns me, and constipation is at the worst level I've ever had...
I don't know if this happens to others, but the whole scenario is making me very low in myself.

Bet you wish you hadn't asked now!! :-)

XX
10-09-2014, 08:53 AM   #30
smallfry
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No Sazzle, glad I asked. Abscess/fistula are no fun and you are not alone, connecting and finding support in others can be very helpful when stuck in the round and round cycle of abscess/fistula. I'm here if you ever need to chat, I have a blog too if you are interested. Here's a link http://crohnic-crohns.tumblr.com/.

Really hope the surgeon has some answers for you as to what is causing your abscess/fistula issues. Maybe a stool softener could be helpful to help with constipation if you are not already using one?

With be thinking of you,
Jen
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