Paranoia?

[O.D.]

Hi all,

First post here and I'll admit I've been reading this forum for a while. Finally decided I needed to actually ask some questions and get some stuff off my chest.

I'm a 23 year old student/IT person based in Staffordshire (Don't get me started on Staffs hospital) and I was diagnosed with Crohn's within the first 3 months of my first year at Uni.

I've had two operations, minor (I think) - One was to drain an internal abscess, which literally ended up with me not being able to walk before I went to A&E. This was drained. However I was not put on anti-biotics.

Last Christmas, I went in for my second surgery. An outer facing abscess. Massive, all the standard gory and gross details. I had it drained, managed to get home for x-mas and new year (The only good thing about the end of last year?) - HOWEVER, this is where the fun starts.

Have been in and out of hospitals and GPs for wound-management (Got to love the amount of cosmapore I've been through) and I've had several MRIs, I literally got a phonecall about 45 minutes ago (24/05/11) saying I have a 'Complex Fistula in-ano' - I have two hospital appointments in the next 2 days to discuss further options.

This is where paranoia kicks in and this is the cause of me coming here.

What am I to expect? What should I ask my consultant? What should I mention? Am I going to need surgery? What's the recovery time? What are the post-op effects? Ideally, I'd like the whole "Ohh, nothing bad will happen and you'll be fine and better in 1 day" but, I know this isn't the case and would honestly like to be told straight.

Bloody scared to be honest. The actual abscess is on the inside of my right buttox (About 3 inches from the.. Well, you know) and the fistula is into my lower intestine.

Bathroom habbits (Since pre-christmas) is around once or twice a day, I'm very careful with my diet and generally avoid what makes me flare.

Currently work, where I'm at a desk for 7-8 hours a day (3 tramadol tablets every morning to get me to lunch, then 2 after lunch) - No major issues with sitting down if on the tablets. Can't move very well if I'm off them.

Not been on any tablets for Crohn's disease in about a year (Being sorted soon I think)

I could keep going for hours, but, I shall not.

Any comments, answers, or general help would be great.

*Wave*

 

[Cookie]

Hi OD. Sorry to hear you are going through this atm. i have had a complex fistula, so i will give you a very brief recap of what I know...some of this you may already know, so my apologies. A complex fistula is when the fistula tract branches off to form another fistula or an abscess. Generally doctors will prescribe Cipro and Flagyl which are antibiotics that help keep the abscess drained and free of infection. They are wonderful, but in my experience, only help when you are on them. There are many who take them long-term, but you should be aware of the long term side effects.

There are several surgery options, depending on your surgeon and how active your Crohns is. I had a flap advancement surgery, which is where they go in, clean things out and place a healthy piece of tissue (reinforced with aloe) over the fistula opening to close it off. this option does not have a very high success rate in crohns patients, which is why many doctors do not like to do it. i had the surgery twice before it was successful. So far it has been 19 months since the last one and all seems to be going ok. There are other options of drainage setons which you probably had before. i do not have a lot to offer about them since I never had one, but there is a lot of info on the forum about them.

Also, biologics such as Remicade are supposed to be very good at closing fistulas. It did not work for me, but it has worked for many, so i would say it's worth a shot. I hope you find some of this info useful. Best of luck with getting this all sorted out. keep us posted on how you are doing.

 

[Silvermoon]

Having had the same diagnosis 18 months ago (although I swear I have been dealing with it for about 5 years and no one believed/believes me) I can't add anymore than what Cookie just said - she is absolutely 110% spot on.....

I had a temp. colostomy done in January (as a bit of a last resort) to try and solve this issue - unfortunately I am STILL on Cipro and Flagyl to try and clean up the remaining infection - but at least at this point things look like they are starting to actually heal, rather than just the antibiotics "maintaining" a state of lesser infection.....

None of the options are the most pleasant (but then, what about this disease really IS plesant when it decides to rear it's ugly head) - however hopefully your fistulas aren't TOO complex, and someone is at least recognizing that there IS a problem and something can be done about it....

I wish you well, and definitely keep us posted.

 

[O.D.]

Hi both,

Thank you for the replies. In a way it helped, has at least given me more of an insight on what sort of drugs are there and what options there are in the future; which in itself means I can ask more questions. <3 to you both.

Saw my consultant today (Four letter word starting with T) who has set me on a 6 week (2x3) course of 2 sets of antibiotics. That'll be the third set pumped into me in the last few weeks now.. He asked what meds I was on, said none (!!!) as he'd not said I needed to take any, then proceeded to have a strop. I'm going to be changing my primary 'carer'? When I go back down to London next, as I want actual support and help with it. (Probably will get more here, at least more of the kind I'd like)

I'm seeing a consultant tomorrow regarding the fistulas and the MRI results, so I'll HOPEFULLY have a better idea of what my body is actually trying to do with me. It's lovely.

Cookie: If you're okay with answering: What does the flap.. Feel like? Can you tell it's there? Requiring pain management to deal with anything post-op? (Especially after 19 months) - That's honestly my biggest problem. I can probably deal with surgery (Scared out of my mind about having to have things removed for good) but it's the recovery time which scares me.

When I had the initial op, I had to pull a white cloth out of me (... NO one told me this had to be done in a bath, so guess how I did it..) which I think I found more traumatising than anything else. It's the after-thought that does my head in.

Silvermoon: I had a really bad stomach movement during my mid-teens (16 or so?) where something went pop (3am trip to the hospital to be poked and checked was fun at that age), which was a first sign if I looked back at it now, no idea then though. University was when it really crept up on me. Sucks.

Thank you both again.

 

[Cookie]

I had my fistula for several years before my first surgery, but then my Crohns seemed to be in remission (other than the fistula) so i decided to go for it. The first time around was not too painful at all. I took the recommended two weeks off from work for recovery, but I honestly didn't need it. I think I only took one of the pain meds prescribed to me (I try to avoid them if possible because I fear addiction). All that said, the fistula returned in less than a year, even worse than before. After another year of on and off Cipro and Flagyl, my crohns was again looking pretty good and we decided to try it again. This time it was a different surgeon and she used the aloe (did not have the aloe reinforcement the first time around). I was expecting things to be like the first time, but this recovery was much more painful. i used my whole bottle of pain meds as well as some left over from the first op. I did return to work within two weeks, but sitting and walking were a bit uncomfortable. But within a month, I felt back to normal.

So, to answer some of your questions...the recovery is somewhat painful, but in the end, the relief is well worth it. And no you can not feel the flap once it heals. I would definitely talk to your doc about the aloe reinforcement. I would not do it again without it. I'm not sure if it is responsible for the greater success the second time or if the Crohns was just in a better state of remission. From what I have read here, you might have a hard time finding a surgeon willing to do the operation if you have Crohns. But if the rest of your symptoms appear to be inactive, it might be an opportunity.

The final thing I should mention is that with each surgery you weaken the sphincter muscles and risk incontinence. When my stools are loose, I get a bit of leakage, but its tolerable. I just wear a panty liner.

Hope this helps!