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Help and advise

I am a 32 yr old female and I have had my fistula since 2009 but was only diagnosed with it in August 2014! When it first appeared as a lump in 2009 I was diagnosed with a bartholin cyst and had it drained in 2009. I then had continual problems with it but because I lived abroad I just got on with it. On returning to the uk in 2012 I was in and out of a and e with repeated swelling, pain and what we thought was a bartholin abscess. The drs were very dismissive and often sent me away although I could barely walk. I finally saw a gynae consultant who booked me in for surgery in June 2014 where they removed the whole bartholin gland. 3 days after surgery the wound opened and I was told in had an infection and was given different courses of antibiotics to heal it.
Well it never did heal because it was a fistula and finally people listened to what I was telling them I was seeing in August!

Since then I have been referred to a colorectal surgeon and have had 3 setons placed and the last one removed this week which has left me with an even bigger hole where I have been cut! The setons never agreed with me, first one was too tight and was admitted to a and e as couldn't walk, second one had a large knot which imbedded into my skin and third one felt like first and has been removed.

My consultant has always said that I would need surgery to repair my fistula and has recommended a fistolectomy and advancement flap. This week he has now spoken about letting it heal on its own which concerns me seeing as though it has existed for so long and clearly isn't going anywhere! I'm keen to start a family which is impossible at the mo! The type that I have crossed one of my sphincter muscles and then goes up and over the second. It's classed as complex and any research on the Internet says surgery is the only option.

I'm going through final tests for Crohn's as have been diagnosed with ibs since I was 20. If I don't have Crohn's I will be shocked but we will see.

I'm back to see my consultant on 17th and am going to ask to be referred to st marks in london who are fistula specialists and am going to book a private consultation with a surgeon for a second opinion at the end of the month.

I was diagnosed with ibs when I was 20 but have constantly struggled with diarrhoea especially at night, fatigue, mouth ulcers, weight loss etc.
I have read about perineal Crohn's can you have just that or do you need other symptons internally also?

Any help or advise would be appreciated as very down at the mo x
 
Sorry to hear of the tough time you have had and that you are feeling down :hug:. Over on the surgery forum, there is a running thread for support for those with fistula(s) and other threads on the topic. I hope your upcoming consultations are helpful.
 
@Lilly I have been diagnosed with Perianal Crohns & currently have 3 fistulas with three separate sets of draining setons in place. The fistulas are complex double tracts & transphincteric. I've had two colonoscopys both deemed clear. I had two significant D flares in 2011 & 2013 & these two flares resulted in three Fistluas. Humira was recommended by my first GI based on my symptoms & the fistulas alone.
 
Hi Lilly, welcome and I'm sorry you've had such a hard time.
I have been battling with fistulas and abscess for four years now. I've tried all the drugs out there. From what I've read, when a fistula lies either too close to the sphincter or goes through it then it is not possible to lay it open or remove it without the risk of incontinence. That's why I've not had surgery on my fistulas. It could have made me incontinent. I have a lot of numbness down there already. The only thing that worked for me was Remicade.
I think your doctor is correct in not doing the surgery. What meds are you on?
:ghug:
 
@Tuff My new GI has just recommended Remicade as the preferred treatment for closing fistulas as well. I understand that Humira may work for fistula patients as well & my initial GI had recommended Humira for me.
 
Thank you for all your replies so far. I will take a look at the surgery feed. I am yet to be diagnosed so am not on medication at the moment.

I am awaiting results for blood and stool sample tests, had a colonoscopy on my large bowel which I've been told was ok but no biopsies were done and my small
bowel is yet to be looked at.

Jay its a personal question but I hope you don't mind me asking. With perianal Crohn's will inflammation show up on other tests? I've had the symptoms as explained above plus anal skin tags also. The reason I ask is that drs don't seem to be listening to what I am saying!

Thank u x
 
Thank you for all your replies so far. I will take a look at the surgery feed. I am yet to be diagnosed so am not on medication at the moment.

I am awaiting results for blood and stool sample tests, had a colonoscopy on my large bowel which I've been told was ok but no biopsies were done and my small
bowel is yet to be looked at.

Jay its a personal question but I hope you don't mind me asking. With perianal Crohn's will inflammation show up on other tests? I've had the symptoms as explained above plus anal skin tags also. The reason I ask is that drs don't seem to be listening to what I am saying!

Thank u x
Lilly,
Please be patient with the tests available & remember that some of us may have an initial manifestation of Crohn's with Isolated Perianal Crohn's & no other positive test indicators. Although, as I understand it, the initial manifestation of isolated Perianal Crohn's is often followed by colonic manifestation within a few years...Currently, my blood tests (ie.CRP) excellent, clinical symptoms (ie.D flare free in 2014) and two colonoscopies & tissue samples in 2012 & 2014 clear. Interesting though, wrt my recent September colonoscopy, my new GI indicated that one of the tissue samples showed inflamation. I'm going back for a third colonoscopy soon. They want to take a lot more tissue samples...I'm thankful for the thoroughness. It has been very hard for me to understand that Biologics are my first step without concomitant colonic tissue evidence. But isolated Perianal Crohn's does occur as the initial presentation in a smaller percent of Crohn's diagnosis. So you may not find other tests that currently support a
"Crohn's Diagnosis" at this point in time...
 
Jay

I am trying to be patient I can promise just want answers so that I know where I am going next.
Had my blood taken today so will await those results and then hopefully know more.
I am managing to find more information on perianal disease and it does say that it can exist without involvement of the intestine.
Will let you know when I know more x
 
@Lilly here's an article on Perianal Crohn's that you may find helpful. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780223/
Reference Page 2
"Perianal Crohn's disease may herald the development of intestinal manifestations by several months to several years. About two thirds of patients with perianal disease will be diagnosed with intestinal disease within 1 year, another third within 1 to 5 years, with only a few patients being diagnosed after more than 5 years.8 A small proportion with Crohn's disease may persist in having isolated perianal involvement."
 
Hey all!

So I have been back to see my consultant after another surgery to remove my seton beacuse it was causing so muh pain and all pain meds weren't covering it.

I am due to have an MRI of my small bowel in the next 4 weeks all being well.

I went to my GP today and got the results of my calprotectin test. Unfort my GP didn't seem to have a great understanding. My result was 100 which I was advised was moderate, and above the normal levels which should be 50.

Has anyone been diagnosed off of this?

The results will be sent to my colorectal surgeon and also to gastroenterology but unfort they don't seem to all speak here so you end up having to deal with them all separately.

Any advise would be greatly received. xx
 
Sorry not posted in a while but all been a but mad! So I decided to go for a surgical repair to my fistula which I had on 2nd December. I opted for a full fistulectomy and advancement flap. My surgeon saw me after and said he was happy. I remained in hospital on a liquid diet for 4 days but knew after day two that the procedure hadn't been successful as I felt air pass through like previously. This gradually for worse until I opened my bowels in day 8 and again faecal matter came through.
To say I'm disappointed is an understatement but in not incontinant so thats a plus! Think you have to take any positive with this condition?!
So have now been referred as an urgent case to St Marks in London. The hospital is the only one in the world to deal solely with bowel disease so I'm hioefuk they'll get me fixed.
I'm also hoping they'll re do all tests as I've still it been diagnosed although am convinced I've got Crohn's!
Will keep you posted x
 
I'm sorry to hear that the surgery wasn't successful. I really do feel for you as a dear friend of mind has had several failed surgeries for a RV fistula. I'll cross my fingers for you that St Marks can help - I've heard only good things about them.
 
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