Any advice for new member

Hello i came across this site yesterday and was amazed by the amount of people on it.
Basically i am looking for any advice on my problems from anyone with similar problems around the world as i noticed there was a lot of Americans on here , so here goes , by the way i'm British
In march 2012 i went into hospital not being able to keep any liquid down after a month of diarrhea , after a few tests they decided they needed to operate , i had a toxic mega colon which was obviously removed after which i was left with a stoma.Several days later i had terrible internal bleeding from my rectal stump which required another operation which left me with an open wound which they used vacum pumps to help close , unfortuately i developed a fistula near where my belly button used to be and since then i have had a wound manager bag over it in addition to my stoma (99% of feces comes out of fistula).
So it's been 2 years now during which i have suffered severe pains in my joints on top of everything else but my GI doctor won't give me any drugs to counter this ( even basic anti inflamatories because of the fistula ? ) , it has come to the point now where my GI doctor and surgeon are debating whether to try inflixomab or surgery to sort this fistula but they can't agree at the moment.
I'm a 40 year old male currently on nothing more than co-codamol as i can't get drugs to combat the chrons due to my fistula or at least that is what i'm being told.

Thank you Stef17 for your reply , unfortunately the NHS (which is a great service) does not really give the patient the power . I was told when all this happened by my surgeon that surgery would not be carried out for 2 years to allow everything to heal properly.
My personal preference would be surgery as i believe it would have the best chance of success ? whereas infliximab would be several months down the line before results would be known ?
I last saw my surgeon around 2 months ago and had my latest CT 4 weeks ago so hopefully i'll hear shortly what/if they are going to do anything.
My work have been very understanding and i can return when able but as a result of my wound bag i can't really sit or drive due to it leaking so can't return to work , which i shouldn't really be worried about but due to having family it's always on my mind.
As i said it's the joint pain that is bad but they won't give me meds for it ?
In addition to this i was diagnosed with osteoporosis last year after crushing 4 vertibrae which was not good as i couldn't get a back brace due to my bags.
I'll stop complaining now as there are others on here with equally if not worse problems than mine , thanks again for the reply.

Welcome,

Your are being undertreated drug-wise it sounds like. It's my understanding that biologics are used to help fistulas heal and I know a surgeon is probably going to think surgery is the best, but it seems like they are forgetting that you are suffering in the time they are hum-hawing. I'm American and don't know the ins and outs of your healthcare system (or ours, for that matter!), but I would think that you and your GI, at this point should be driving the bus on your Crohn's disease care, not your surgeon. That's the way it works in my neck of the woods at least.

I know NCOT and others will give you lots of good advice, especially dealing with you healthcare system.

You're right about this being an active forum. I've wondered why there are so many more posters in the IBD forums than on the other forums.

Anyway, I hope you'll find yourself "at home" here. -Joy

Thank you for the replies NCOT i took your advice and have had a good look through previous threads which have been very helpful re gas which i do suffer from to such an extent there has been times my wound manager bag has inflated in my sleep and leaked so diet is something i'm looking at , also my prostate inflamation which my GP believes is down to my testosterone injections as i had an MRI scan a few months ago and it came back as no serious disease ( thank god ).
I live in Aberdeen so will wait until i see the surgeon before deciding on seeing other Doctors , looking through the threads the only thing i can think of as to why i'm not on any crohns meds is an off the cuff remark my surgeon made last year was about a pocket of perhaps puss in my abdomen and maybe that could have an adverse effect with infliximab.

I think a lot of my problem when it comes to knowledge of whats going on with me is the fact i was an emergency case and there was no doctor consultations or the like , one day i was admitted to hospital and the next i was having a subtotal colectomy with end ileostomy as my colon had perforated and was in such a state they couldn't tell me from it if i had crohns or not , that came later.

Glad your in remission NCOT but yes it's hard some days.

JaSanne , the funny thing is my surgeon wants to leave it to the GI and vice versa , whereas i would prefer surgery as i think it would be successful but after reading some threads on here now i'm not so sure , i've seen the GI once in 2 years to be told no meds.

The amount of different meds being mentioned on here is mind boggling and i've never heard of any , the only strong painkiller i've been on for a length of time was Oxynorm of which i was on 1000ml a week , yes i know now it was a bad move as i was addicted to it basically , i managed to wean myself off it last year and funnily enough the endocrinology people say that was probably what caused my testosterone levels to fall.

Thanks for the links NCOT i'll maybe be able to discuss thing's with my surgeon next time instead of just sitting there with a worried look on my face.

Hi schuco...wish I didn't have to welcome you here...but welcome.

I am in the states so I can not speak to your health insurance, but I do like the other reference to try other docs if possible.  It really does sound like you are being under treted for the fistula at the moment (that is based on the little data I ahve here though).

I have had CD for a long time now...but I do not have a stoma so I can not speak to that.  I have been very fortunate and only had one fistula.  The first course of treatment tried was metronidazole (flagyl) - a very strong antibiotic.  It was healing the fistula quite well until I found I had a bad reaction to the medicine that some folks get (peripheral neuropathy).  Perhaps you should discuss that option if the ongoing infection is keeping you from going to remicade or humira yet.

Wishing you well.....

schuco...night sweats could be a sign of inflamation w/ or w/o fever. A fistula is a "hole" and if you have a "hole" under a "hole", I am concerned you may actually have 2 fistulas which is what DH has. I commented about his issues and what we have found that helps with leaks on your other post. In addition to the info I shared there, if you have a lot of gas, (which DH does as well), you might be better off utilizing ostomy supplies, (bag, flange, etc.) as this appliance can be "burped" to release gas before it causes the appliance to expand to the point of pulling loose from your abdomen. They make ostomy pouches which have filters built into them to help eliminate the gas from the pouch. DH, (and many others), have found they do not always work well. DH has chosen instead to use a pouch w/o filter, but he cuts a tiny slit in the outside layer of the pouch and attaches a filter called Osteo-Vent. This filter has a cap, which when the need arises you can step off by yourself to a "safe zone" for releasing pent up gas, snap the cap off, the gas is released and you put the cap back on and go on your way.

I agree with others who have posted that it is certainly not in your best interest to not treat your Crohn's because you have a fistula. Never heard of such a thing. DH gives himself a Humira, (biological) injection every other week. We have been told that the biological Remicade is good at healing internal fistulas, but not ones which go to the surface. DH tooks Remicade years ago, but had an allergic reaction and had to quit the infusions. The Humira seems to keep the amount of output from his fistulas down and seems to at least reduce Crohn's symptoms. I really think you need to find a good gastro doc! Take care!