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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » What are some good questions to ask a doctor?



10-21-2011, 09:20 PM   #1
KWalker
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What are some good questions to ask a doctor?

Finally after a long wait, I now have an appointment with a specialist on November 22. It's the soonest they could get me in. Anywho, it's been so long since I've been to a specialist for crohn's and this will be the first time for me seeing this doctor as I moved away from my old specialist. I am also old enough now that my mom doesnt really do the talking for me and the doctor speaks to me.

I have crohn's, but my main issue of concern right now is my fistula. If that's what it is even. The symptoms lead to that, I'm just not sure what kind. It's a raised, tunnel like bump, probably about 1-2" long on my butt, and is now leaking quite a bit. Is that a good or bad thing? It leaks puss, and I have to wear pads to avoid wetness on my clothes. Sometimes it hurts, but for the most part, the biggest issue is the draining.

Here's my thing. I've had it easily for a few years now. Up until about last year, there was no draining at all. Now, I have days where I go through 2-3 pads so I feel clean all the time, and it leaks quite a bit. I can feel where its coming from, but having my head on my shoulders, it's hard to see it exactly lol. I basically want to ask the doctor what my options are. I just can't justify taking time off school to spend time in a hospital while in pain from surgery, when I feel perfectly fine right now, but can a fistula cause more serious problems? Whats the worst that can happen with one?

Can a doctor force you to have surgery, or is it all your choice? I don't want to get there and talk to him and him say I need surgery and that's he's willing to work with.

If it were your very first time with a new specialist, how would you act? Would you immediately let him do the tests he wants to do or would you leave and think about it? I know it's been a long time since I've had any tests done, but I would just hate to jump into something with a bad doctor. If he wanted to do a "scope" with this fistula, how would that work? Has anyone ever had that?

For the people who have done the surgery for the fistula, can you give me some info? Do you regret doing it? How did it feel after? I've heard the success rate isnt the greatest and often they end up coming back anyways.

Thanks guys!
10-22-2011, 03:02 AM   #2
Grumbletum
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Hey there :-) Sorry to hear you are having problems with what does sound like a fistula :-( I don't have experience with this type, but plenty people here do.
I think asking what you're options are is a good question and take a notebook with you. Helps if they throw a lot of info at you. If you haven't had tests for a while, it might be better to have what they suggest to see how things have progressed. One possible complication of a fistula is developing an abscess and they need to be taken care of quickly.
Have you read the guide Ben put together in this forum's sticky? It could help you prepare for your appt and has some advice on ways to get some relief from your symptoms.
Let us know how you get on at the docs.
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10-22-2011, 07:33 AM   #3
TLA2011
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Hey there :-) Sorry to hear you are having problems with what does sound like a fistula :-( I don't have experience with this type, but plenty people here do.
I think asking what you're options are is a good question and take a notebook with you. Helps if they throw a lot of info at you. If you haven't had tests for a while, it might be better to have what they suggest to see how things have progressed. One possible complication of a fistula is developing an abscess and they need to be taken care of quickly.
Have you read the guide Ben put together in this forum's sticky? It could help you prepare for your appt and has some advice on ways to get some relief from your symptoms.
Let us know how you get on at the docs.
Hello. I have a fistula . I just had a bit of swelling; like a lump; & a bit of pain & discharge. But it was definitely liveable - like what you've said. I thought it might have been like a hemorrhoid or something; having no real idea! I went to the GP then to the specialist. It took my 5months to get into a specialist here! I'm all very new at this. 3 months ago I thought I was fine. Now I've been diagnosed with crohns. I have a seton in place. I've had 3 surgeries. I'm on purinethol and 2 weeks off starting remicade. My understanding of the problems with fistulas, is that even though they might not cause us huge pain, they continue to spread, whether quickly or slowly, but either way, they don't just exist, but rather continue to grow through the body. It's my understanding that the fistulas must be treated asap for that reason. My world has been turned upside down over the last 3mths; but my doctors are now moving very quick (in terms of drugs/MRI/bloodtests/seton) to stop the fistula from spreading. And my understanding is, if they can stop it from spreading, it will prevent surgery. I'm so new to all of this;& just reiterating what I think I heard from my specialists. Maybe ask about the drug options before surgery? I hope some of my info that I've shared will help you! Let me know how you go!


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10-22-2011, 07:42 AM   #4
emenacinc
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It depends on which things you have concerns. If you are conscious about your fitness then you will ask about that kind of things . Another thing is that if you are feeling some thing related to your health then you have to as about that thing.
10-22-2011, 07:57 AM   #5
__JK__
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Have you done this before?

How steady are your hands?

How much alcohol do you consume each week?


On a serious note. I had surgery for this years ago when first DX. If i remember rightly I had four surgeries before they disapeared. They just kept coming back. Finally they stopped. About 18 years later it came back but went away on it's own. It's still there but only very minor and very inactive.
10-22-2011, 08:44 AM   #6
KWalker
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Thanks for the replys. That's the first time I've ever heard they could spread. JK, that's exactly my thing. I don't want to go through all those surgeries and be bothered with those setons everyone says they hate only for them to come back. Like I've said, I've lived with mine for a few years now and aside from a few days of pain and the drainage, I just don't know if I want to put my life on hold for this if I've lived with it already. I'm sure that sounds stubborn but I guess after this long it just feels normal.

I'm not too worried about fitness. I don't have time for that, but I'm pretty healthy that way. As far as my health, I just want to get checked and see how my crohns is in general, whether its gotten better or worse, etc.

Has anyone had a fistula and NOT gotten the seton or other surgeries?
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