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has anyone told there doctor NO to having another colonoscopy or sig?

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Ulcerative Colitis
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Posted 11/3/2010 5:09 AM (GMT 0)
I have an appointment with my GI dr on thursday. I started flaring pretty bad last week which always happens after I have a baby. I went to my family physician because I hadn't heard back from my GI and needed meds for over the weekend because things were getting bad (extremely bad joint pain, blood, gas, urgency etc...) . So I contacted my GI's office yesterday and asked if we could just have a phone consult and discuss meds but of course he had to say no he wanted me to come in. Everytime I go in he wants me to have either a colonoscopy or a sigmoidoscopy. I was diagnosed 3 years ago (Oct 2007) and have already had 2 colonoscopies and 3 sigmoidoscopies. My last scope was December 2009...right before I found out I was pregnant. My colitis goes away completely when I am pregnant but comes back with a vengenance 3-6 months after giving birth.

I feel that I have had excessive scopes done in the last 3 years...and I know on thursday he will say he wants me to have another scope ....

I have said no to medicines and stuff like that but never a scope....

Anyone ever just say NO to having another scope and should I go through with one because its been just about a year??

Posted 11/3/2010 5:20 AM (GMT 0)
My GI's take is that after you've been scoped for diagnosis, the only reason to need further scopes to check for cancer, etc. He said that seeing how far up the inflammation is, how bad it is, yadda, yadda, yadda isn't all that helpful, because you've got to get the symptoms under control, and that the severity of the symptoms doesn't correlate with the severity/extent of inflammation. For example, I had pancolitis when I was diagnosed, yet he's seen people with worse symptoms that only had left-sided involvement.

However, now that I look at your sig, he may want to take a look to see if your UP has spread, warranting oral meds. Of course, I'd push to just take the oral meds anyway, assuming it's mesalamine. Are you intolerant to mesalamine?
Posted 11/3/2010 10:06 AM (GMT 0)
I agree with fruitgirl- it is your body and I have said no to scoping other than that required for cancer surveillance. Flex sigs are more unpleasant than colonoscopies normally due to lack of sedation. I would never, ever allow anyone to give me a rigid sig- they are horribly uncomfortable.
Posted 11/3/2010 10:47 AM (GMT 0)
I'd press the GI for the diagnostic rationale.  If he just wants to "see what's going on," there's no reason to have one.  I'd say no (and I'd probably look for a new GI).

Most guidelines contraindicate visualizing the disease in favor of treating the symptoms with meds.  Once you're diagnosed, you're diagnosed.

 

Posted 11/3/2010 11:05 AM (GMT 0)
Find another doctor if you've been #1) diagnosed and have no new issues that cause concern and #2) have had a recent colonoscopy with biopsies to screen for cancer. IMO there's no reason for annual scopes after #1&2 and the prep is hard (possibly damaging) to active UC'ers.

My doctor, new to me 2.5 years now, has been pressing for a scope since I first saw her. Actually threatened dropping me at my first appointment. I said no because I was very bad at the time and could not face the prep. She backed down but her nurse brings it up every time I call for any reason.

I will get an updated scope in 2011 because it will be 4-5 years and is due to be done. On my schedule not my doctors.

Cancer detection is a very good reason for a scope. Get it done if you haven't had a full colonoscopy.
Posted 11/3/2010 12:00 PM (GMT 0)
I've had sigs almost every year in between c-scopes. Mainly so the doc can take a look AND take a few biopsies. It wasn't until about 2 months ago that the doc just took a look thru the sig because I was having severe bleeding and he wanted to know if it was from my internal hemmeroids or active Uc (unfortunately it was from the Uc). But it is your body and you get to choose what you want to do with it. You shouldn't be afraid to see the doc just because he always wants to take a "peek". But if he wants to do biopsies, then I would say do it to be on the safe side.
Posted 11/3/2010 1:39 PM (GMT 0)
Since being diagnosed in late April my daughter has had 4 scopes. 1 colonoscopy (initial diagnosis) and 3 sigmoids. Next week she will be having her 5th scope. Her GI's reason is "to see the severity of the inflammation". He initially wanted to do it sooner than next week but we fought him on it. He was pretty p*ssed.... but hey he doesn't have the final say.

It's Your body. You have the final say !!!
Posted 11/3/2010 5:40 PM (GMT 0)
I told a doctor no to scoping and she really really kept pushing it.  After several such issues with this doc, I switched to someone much more hands off, which suits me fine.  I have read in several places that UC is one of those diseases where the severity of it pretty well affects how you feel.  SO if all is going well, you're probably not flaring, and if you are flaring horribly, you have horrible symptoms.  Scoping is good for initial diagnosis and then periodically for cancer screening, but I wouldn't do it more than necessary.  Actually, when I have had it done, it makes my UC MUCH worse for about a week immediately after, so I would like to avoid more scoping as much as possible!
Posted 11/3/2010 5:42 PM (GMT 0)
Wow!
I've had a colonoscopy every year since 1991, when I was dxed with pancolitis and an adenoma was found, but... I don't believe I've had a sig since then. I had maybe three of four of those in the first couple of years, with my PCP, the first GI I saw, and then maybe two with my long-term GI..... but then I just do the annual colonoscopies with biopsies.
What I've heard from the docs, as already mentioned, is that they are aiming to treat the symptoms.
Posted 11/3/2010 5:54 PM (GMT 0)
Thanks everyone for you replies. I am actually looking into changing providers right now for 1 because I think I need a 2nd opinion. Maybe some fresh eyes looking at me we will come up with a new plan of action. I will still go see my old GI tommorrow until I can get a referral to go see a new one that a few people have recommended to me. 

I think since I am planning on switching I will definately tell him that I am not going to do a scope right now. I feel the same way as other people about scopes.... Just because my scope isn't awful looking doesn't mean im not having symptoms.  The 3 things that affect me most are gas, extreme joint pain, and urgency accompanied by blood. I have gone in where I have severe proctitis and then I have been scoped and was told only mild inflammation....so he said he doesn't know where my symptoms are coming from when my scope looks like that.  That answer doesn't help the fact that I feel lousy and am going to the bathroom alot.

Thanks for you input!! 

Posted 11/3/2010 6:09 PM (GMT 0)
Sounds like a good decision. I'd definitely say "no" to the scope and find another doctor. I think a scope during a bad flare can make things much worse. At my sickest, they were unable to get all the way around because my poor colon was spasming so much. The pain was so bad, I kept coming out of the anesthesia and it was terrible. The trauma of the prep process can do a number on a sensitive colon, too.

Ultimately, it's your body and it's your decision. At the ten year mark, my GI started putting on the pressure for annual scopes. Because I've been in remission for so long and my last scope was excellent, I've agreed to every other year.
Posted 11/3/2010 6:09 PM (GMT 0)
Hello Lovemyboys09,

I noticed in your signature that you say you are taking 40 mgs of pred. If this is true, then it's important for your GI to know what the condition of your colon is so that he can decide how to treat your condition. He will only be able to this by seeing the condition of your colon. He can't just keep prescribing you pred indefinitely.

I think I've had two colonoscopies and two sigs. I'm okay with getting them. I, too, want to know what it looks like inside. My GI is good at doing them; so I'm not worried about complications.

Post Edited (subdued) : 11/3/2010 12:14:24 PM (GMT-6)

Posted 11/4/2010 2:45 AM (GMT 0)
I am kind of new to this...what is a scope?  I am familar with sig and colonoscopy, but what are you referring to as a scope?
Posted 11/4/2010 3:33 AM (GMT 0)
Lovemyboys09-- yes, there have been times when I refused to get scoped soon. Pursuant to your particular situation-- flaring after childbirth: I was sitting in my gastro's waiting room about a yr ago when I suddenly overheard one woman telling another that she has 4 kids, and that her UC flared after each of them was born! So-- your flare is not an unusual predicament, but you need an understanding & competent gastro to get you thru it. Best wishes for you to get it under control ASAP. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 11/4/2010 5:25 AM (GMT 0)

nana1947 said...
I am kind of new to this...what is a scope? I am familar with sig and colonoscopy, but what are you referring to as a scope?

sigmoido scope y
colono scope y
Posted 11/4/2010 5:35 AM (GMT 0)
I was surprised to see you're on a high dose of prednisone. If so I think he needs to have a look see every now and then to see your progress.

I was surprised when I got my second flex sig in five months. The first showed me in remissoin, the second slight inflammation. It was good information, but need to focus on the symptoms.

What's your tapering plans?
Posted 11/4/2010 5:44 AM (GMT 0)
I was put on prednisone by my family practice doctor because I couldn't get the GI's office to call me back. SO he stuck me on 40 mg's. Finally got a hold of my GI's nurse on tuesday and they want me to stay on that dose until I go see him tommorrow. They are squeezing me in.....so I really don't know what my taper plan looks like. However its going to be a quick one because I was on prednisone from mar 2009 - november 2009 without ever being off of it. Its the 1 thing that works for me but i don't want my body to become dependent on it like I was.
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