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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Almost a year with a fistula...



03-20-2012, 07:28 AM   #1
gracifer
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Join Date: Feb 2011
Location: London, United Kingdom
Almost a year with a fistula...

Hi guys. This is going to be long so apologies in advance. I thought i'd start at the beginning when this all started..
Firstly wayyy back last year in May (I had been put onto steriods etc because after about a year of puking/not being able to eat they thought I had crohns disease in my TI) anyway i got a UTI.. about 5 months later and nothing helping the doctor later he thought it might be related to my crohns...
So my doctor didn't refer me to my crohns consultant but to a different urology doctor altogether. Who did an MRI and Cysotopy (which i can honestly say was one of the worst experiences..) what he found from cy was that there was some inflammation at the tiop end of the bladder. (My symptoms being - bladder farts, occasional blood, very cloudy/yellow urine, painful urination, frequent the very worst its about 20-25 times a day, best about 10(when i used to go probably 4 times a day?!) tender bladder feeling, and very rarely fecal matter - got hideously drunk once on incredibly cheap wine and it reacted in such a way you would have thought i had done a poo through my uretha lol! Very scary at the time!!) Asked for me to get an MRI and then told me I would definately have to have an operation! (yet having been on here people have told me this powerful medicine can work?) So thats why I had the MRI. However, when we return to talk through the findings we get a doctor who, even putting it nicely had such an inadequate grasp of english could not tell me what they had found, had no idea i actually had crohns, and kept going on about how it wasn't cancerous. It was so bad, I got so badly stressed from it all which is never good....
Anyway.. fast forward a few months still getting same old symptoms I have a crohns appointment with my consultant. He says that it looks like i could have an abcess (some weird mass of stuff by the bladder and in the bladder) and fistula (major freak out here!) but he says he'll refer me to a doctor in University College Hospital London a Mr Al Windsor? as he's the best apparently so I readily agreed to it mainly because the other hospital which is nearer to home i've heard horror stories about and well i didn't totally trust it after seeing the useless doctor.
Anyway, I'm sure UCHL is wonderful i've heard great things about windsor however, the nearerst i even get to a surgical consult is in MAY!! Which would mean by then I would have had this thing for a YEAR! I'm 21 (22 tomorrow!) and i have no life because of this thing. We then found out that I will have the consult and then not see him for another month at least because he's on holiday throughout June (very nice for him!) which would mean it would probably be August when I had this operation!
Anyway, yesterday, my mum had persuaded me to keep the appointment with the rather shitty hospital. saying if they cancelled my appointment and put it back later at UCLH (which they have done several times) i might want to just see what they say. The surgen was very switched on (thank god!) and told me, that he was wanted a colonoscopy (which my crohns consultant (i was diagnosed via a CT scan) had told me i didn't need!) and to do a biopsy to make sure it was crohns etc. The irony being was that i had told my mum before going in that noone was going near my arse, also because you do read online that things can go wrong! He told me i would be sedated up to my eyeballs so I wouldn't feel a thing, but just really freaking out over it all. And he wanted to put dye into my bladder to see if there was a hole. Apparently he's going to schedule it for next month. Are colonscopys straight forward? is it common thing for crohns? I thought i had got away from that when my consultant said i didn't need it!! Anyway.. he then told me at the best he could offer me medicine if it was a fistula to fix it (something i didn't know) or do key hole surgery (wahay!) but at the very worse if it was connected to my large intestine and if they find i have crohns in my large intestine then i might have to have a temp stoma! I may be 21 but thats something that has REALLY freaked me out. I haven't had good luck (i know its not luck basically but still) with my health.. annd he asked me how many times i go a day all that jazz. Well I sometimes go once a day, and sometimes go 3/4 times a day. Normally its a normal stool.. but v.occasionally its runny. I had noticed that since i had this problem it can be slightly pussy. But NEVER any blood! I am so freaked out not only by the thought of the colonoscopy but this stoma if there is alot of infection which has caused this hole. Mum is telling me they like to reverse it as quick as poss.. but i know this is being over dramatic i just can't help it... it just can't deal with the idea!!!! Plus she says wherever I go i would need a colonscopy and now can't understand why my crohns consultant didn't make me have it!!
Plus he kept saying there have been studies to show pentasa does nothing to help you with crohns, and if it is crohns we'll put you on a better drug! Get it completely under control! Has anyone else found that? I mean I am often sick even know, about once a month, due to somehting i've eaten or because of getting really stressed out. My stomach at times is really gurgly and sometimes really painfully gurgly. I thought the fistula had happened because the months it had taken to get my crohns under control? Or did it happen because its still active NOW? Do i go onto better crohns medicine and will my life get better remarkably?
So to cut this short.. I think i've decided to go with the shitty hospital because I want to get all of this over and done with so I can get back to my life, hopefully do my MA in september (i took a gap year... but it looks like i might be taking the year off again to get over this year...which means I could go travelling hopefully) and I can't wait about another 4 months for something to happen. But i'm so scared of the unknown off all of this. I'm so jealous that my friends get to live a 'normal' life without worries of a stoma or operations or anything. I know that sounds bad. Im also so fed up with the pain and just want it over with.
So sorry this is so long. I just needed to vent. Noone seems to understand how much this is all getting to me.. If you've got this far thanks for reading!!!
03-20-2012, 11:34 AM   #2
mickey
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Join Date: Dec 2011
Location: Illinois
Yes, a colonoscopy is a good idea for you. Should be able to determine your disease or if another problem present. The prep (drinking fluid and then eliminating all day) is probably more uncomfortable than even the procedure. You will be sedated and then wake up afterward; no problems should be expected.

One thing to consider is that you will be "cleaned out" for this test. You now have an opportunity to begin putting back in your body only healthy things. Healthy in, healthy out. Alcohol can exacerbate your condition, so I would suggest eliminating that for a long time; at least until after you have this under control and thereafter moderately. Eliminate as much sugar as possible. When you have an infection in your system, sugar can help make it grow a great deal more.

Get this taken care of the sooner the better. You are so young and have a great chance at turning this around, if you begin eating and drinking better and keeping the inflammation down in your system. Don't be scared; this is a piece of cake now, compared to handling it years later down the line. You can do it! good luck!
03-20-2012, 11:55 AM   #3
Grumbletum
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Hi Gracifer
It's good to hear from, but not so good that you are still having these issues :-( However, it does sound like they have identified to some extent what the issues are and are on the road to finally getting sorted out.
Yes, a colonoscopy is probably the best test to see the extent of the inflammation in your bowel. After a year with a bowel/bladder abscess and fistula, mine did heal with antibiotics but a scope showed there was still a lot of inflammation, but three doses of Remicade sorted that!
It's a very scary time, I know, but try to take it one day at a time. Try not to stress too much about your studies etc. There will be time for all that when you have your health sorted out. X
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
03-23-2012, 05:35 AM   #4
MikeinBklyn
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Humira closed my fistula in two days.

Good Luck
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