Does any one have any experience of these.  I've had one before but only found it after the abcess was about to explode (thought it was a pile - wish it had been)  anyway it took 3 operations over 14 months to clear (including some months with seton, before it was surgically removed (not the seton)).  Surgeon said I had been unlucky to get one, then I was diagnosed with Crohn's, not so unlucky!!!

Anyway had an MRI on Tuesday and the results Friday, I have another one, the gastroman called it a 'simple fistula' which means I understand that it does not go through the sphincter ( thank goodness).

I'm currently on methortrexate and infliximab, so disappointed that the disease continues unabated.

Can anyone tell me more?

I am sorry to here about your fistulas.  I have fistulas running from my sphincter up into my bowel and my left bottom cheek it is awful it weeps, its sore.  I was diagnosed with crohns 5 years ago, 4 years ago i developed a abscess internally my dr thought it was piles that went on for 4 weeks i was in so much pain. i was finally admitted to hospital and the abscess was drained 4 years on my fistula still has not gone away.  I was on a drug called infliximab for just over a year then i developed antibodies which in turn made my body reject the drug.  I was prescribed Humira 13 weeks ago and it is brilliant i have never felt better, i feel far better than the 8 weekly infliximab infusions, there is no sign of healing yet but i presume my disease needs to be in remission a while longer yet, but my fingers are crossed.  I was wanting to know if anybody out there with fistulizing crohns has had their fistula heal.

My first one went through my sphincter, but also started as an abcess, it was also treated as a pile.  I was in so much pain, I asked my husbad to take me to A&E where they diagnosed it immediately.  While waiting for an operation it burst, the releif was immense.  I had further surgery to put in a seton, and then another to open up the tract, this took about eight weeks to heal, being dressed everyday.  The seton gravitated it away from the sphincter so I as lucky in that sense.  Apart from the scar tissue getting a bit achey now and again, it's been sorted.  But it was surgery that healed it, not infliximab.  I have no idea whether this 2nd fisula has appeared while I've been on infliximab (since just before Xmas) and after about six weeks from the last dose all the symptoms started to re-appear, I am told that they can give it every 6 weeks, so may be that will help me.

Hopefully now you have begun to feel better, the healing can start, let me know how you get please.

Julie

My Crohns started 3 years go with an abscess which was drained then wouldn't heal, this turned out to be 3 highly complex fistulas which took 3 ops over a year and 2 setons to sort out.  About a year later the stomach pains started and I was diagnosed with Crohns.  

I started Azathioprine about 3 months ago and a month after starting it I felt an abscess starting but caught it early this time as I knew what it was.  I had 2 weeks of metronidazole and it didn't go completely but turned to hard tissue with no pain unless I prodded it!  After another 2 weeks it started getting sore and swollen and an MRI showed a small fistula, I was told it would probably go with more metronidazole but after a week back on this it was v. sore and I was v. sick from all the antibiotics so I saw the surgeon who operated the same day, it had grown 4 inches in 3 days but is not complicated like the last one.  

They think it's all part of the original fistula which may have been missed or not healed properly and the immune suppression was enough to cause it to get infected and flare up.  I've got a seton again and need another 1 or 2 ops to sort it as he didn't want to do it all in one go as apparently it heals better with less chance of sphinchter damage this way.

I was feeling really positive about dealing with Crohn's and now am totally fed up at the thougt of 2 more ops, I know they are only small and I have to say this last one hardly hurt at all and I recovered far quicker than I did from the last 3.  I was due to go on holiday the day I had surgery too so am feeling sorry for myself.  Last night I had the worst stomach pain I've ever had and I have been pretty much pain free for a few months, I've got a stricture and am on a low residue diet trying to avoid surgery but I guess this pain may be signs of further narrowing?  Sorry about the rant!

I hope your fistulas heal, I've heard of infliximab healing them without surgery but don't understand how this works.  Good Luck.

Suze

Suze,

Thanks for your reply, have today managed to find out more about my 'new' fistula, and like yours, it's my old one, but it's a simply one, but it's on the same tract as the last one through the sphincter, damn it's so depressing.  I've just left a new thread about what drugs come next so maybe it will also be Humira, and maybe if they can grow so quickly, it may be why I've been feeling sick since Saturday and it's not the drugs afterall, can we ever really know I wonder.

Life with a seton is so not very nice, we are having a new loo put in downstairs and I've also requested we get a bidet as it woud appear that these fistulas are going to keep coming, so at least it will save me stripping off everytime and getting in the shower.

If this is my just desserts in life then I can't remember being that wicked!!!!!

I had 2 peri anal abscesses that required surgery, which healed but reappeared, around 6 months later i suffered terrible stomach pains etc, i had a CT scan and was diagnosed with crohns, and needed a resection, this was in April 2009, since then i have been on Azathiporine, balzalside, questran, however i was informed that i had a fistula which in recent months keeps flaring up causing me so much discomfort, i have been on metronitadazole and pennicillin, however taking these the internal abscess burst with immense release, but after finishing the antibiotics it reappears, my GP seems to take me more seriously than my consultant, and on my last visit to the hospital i was quite blunt in the fact that i am sick and tired of them fobbing me off, so now i have a MRI sheduled for next week, although my last MRI did not show my fistula up at all, it was my surgeon who found it by an internal examination, i am at my wits end as i feel that the consultant is happy that the crohns is under control and when i inform him on the constant fatigue and mouth ulcers, he replies that this is something i have to learn to live with, i am relativley new to this disease and upon diagnosis went straight to surgery, i really do not know what is a flare up, when i get pain in my abdomen i worry that more surgery may be required, i have constant loose stools and need to go to the loo at least 8-10 times a day, some days i cannot believe i could possibly pass so much, and eating out is a definate no no now, as i need to go straight to the loo after eating, i know there are many people who suffer much worse symptons than me, but i am finding it a real struggle to understand as everyone is different in their symptons, i am lucky as i am now able to work from home, but honestly know that i would have had to give up work had this not been an option, i read about so many medications that can heal fistulas, do these work or am i destined to keep having to have surgery and antibiotics. I apologise for the long essay but have been bottling things up for so long, it has taken me so long to decide i need to use forums to try and help me come to terms with this chronic illness.

Hi Ims,  I was put on infliximab for three doses, shortly after they stopped another fistula appeared, so I was put back on infliximab, and it appears to have had an effect.  You are right that what helps one person may not help another, I also avoid eating out, and avoid eating when I know I want to go somewhere, it would also appear some foods have different effects, so it's no easy job to feel that you have any control.  I'm in a fog as you, I was diagnosed after an abcess, then booked in for surgery, just over two years ago, next week I'm back in again for more of the same.  I also wouldn't know what a flareup is, I just have good and bad days, it's never ending, I don't think i'd recognised remission either, do all you symptoms disappear? I'd like to think they do!  We are all the same boat, occassionally we get a cabin with a window!  I also use this forum, because whatever else is going on someone here will know exactly how you are feeling and I find it helps to vent and the added bonus that I don't have to feel embarrassed about the details

hi. my little son of 14 years old has crohns for 6 years now, poor baby. hes on imuran and mesasal, and both arent doing the job any more the crohns got so aggresive that they want to put him onto infliximab. i am so frightened after hearing all the risks (cancers) etc etc. but the doctors say theres no choice its that then mabe surgery, but thats not good news since he has strictures in 4 seperate places, which means theres a chance he ends up with a back in exchange for his bowlels. Please somebody tell me is there a way out? is there anything ELSE that can mabe work? do i must surrender? im petrified!

hi chai, sent you a private msg there just because this is someone elses thread, dunno how much help it was but there are so many people on this forum who are or have been on infliximab that i'm sure can put your mind at ease regarding the side effects.

Thanks Julie, i am awaiting my MRI results i am hoping this may lead to something being done as i am now fed up with the abcess keep flaring up, i am sorry to hear that you are back in for surgery again, i hope alll goes well and you are back on the forum soon.

Well i have seen my GP for the results of my MRI as i do not see my consultant till mid July, it was good news and bad news, the good news is i am not a hyperchondriac they have found something the bad news is there is a fistula along my Sphincter ( only from reading others blogs did i knpow this was not good) my gp has been great he has explained this is not good news but put me at ease as to what he thinks the course of action will be, and 1st off he thinks my drugs will change, he also mentioned i had some nodules on my pelvis, although i forgot to question him about these after the initial news so will pick this up with the consul.

Has anyone else has MRI results where nodules have been found on their pelvis and if so what was it, i am aware that it may be nothing and that everyone is different but i am now kicking yself for not asking about them.

Well quick update, i have seen my consultant and he has confirmed i need further surgery on the fistula before he changes my meds, i believe he is looking to put me on infliximab, so i am just waiting to get my appointment for the surgeon.

I'm about to come off infliximab, although it seems to have kept my fistual at bay, my crohn's goes on unabated, and am currently at home recovering from my second op to remove strictures in under 2 1/2 years, and awaiting dates for more tests.  My consultant is going to change me over to Adalimumab, and I have to say I am a bit nervous about my fistula because of changing drug.  So good luck Ims. X

I'm about to come off infliximab, although it seems to have kept my fistual at bay, my crohn's goes on unabated, and am currently at home recovering from my second op to remove strictures in under 2 1/2 years, and awaiting dates for more tests.  My consultant is going to change me over to Adalimumab, and I have to say I am a bit nervous about my fistula because of changing drug.  So good luck Ims. X