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how to say no ????

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Posted 6/26/2009 3:45 PM (GMT 0)
Hi all, well I went to the doctors for the follow-up yesterday to my colonoscopy. I was told it was moderately -florid ulcerative colitis and pamnceolitis. There are ulcers everywhere to say the least. They want  me to start a 14 day prednisone treatment by IV on monday. I only want to do 5 days so I am trying to get that taken care of. My question is to anyone who may know...how do you say no to being poput in a study drug. I have done two studies and had bad side effects/reactions to them with no relief. I just had a scope done last week and now they are saying I will need another one asap to start the study and every 6 weeks after. I am NOT for the scopes , especially since I went through hell to have the last one donw during a major flare-up. I felt yesterday like I had  no say in the matter...that I was being told the way it is and that was that. I just wanted to talk to the doctor in private but the people involved with the study drug stayed the whole time and pushed their opinions on me to the poiunt where I felt stupid if I said no. I just want to be on convetional medicine for a time and see if that works. I am not in the mood to play guinea pig at this point. I was even told to grow up and get my priorities straight as far as getting going on a study becaue I had expressed some resistance to doing so. I left the office on theverge of tears feeling worse than when I came in and feeling like I have no control over what is done to my own body. I am really mad and really upset. I was always brought up to stand up for yourself because it is your body and only you know it best but after yesterday I felt like a piece of dirt in a pile that was being walked on by the 'higher ups" ANyonw have any advice on how to handle this? I don't want to go in seeming like a complainer either but I know it is not the right time for me to do this and I would at  least like to know I have a right to even say no.
Posted 6/26/2009 3:59 PM (GMT 0)
It is your body. nobody has the right to tell you what you should be doing. find a doctor that respects you and your opinions and work with him/her. I actually have a good relationship with my doctor. He actually cares about what is happening and is doing everything possible to get things working. Unfortunately they arent', but that is another story. Getting back to you ... don't let people push you around or make you feel stupid. They aren't going through the crap you are. Good luck.
Posted 6/26/2009 4:21 PM (GMT 0)
     Darla,  did you sign up for this study?  Sign any kind of contract?  If not, I would blow them all off.   Find another GI doctor who won't use you as a guinea pig.
Posted 6/26/2009 4:29 PM (GMT 0)
no I didn't sign  anything, I went in for a scope last week thinking they were doing it to see how badly things were in there and now they are pushing these studies on me . The nurse that is in charge told me she was sending me a consent form in the mail but I am NOT signing it. I am just very saddnened that it has come to this. I thought they were supposed to be there to help, not to use people in studies. I guess maybe I just have to let it go but it is still so fresh in my mind I'm having a hard time with it. My family docotr has never had anything but what is best for my health in mind and I thought when you move up to a specialist, they were even more for the patient. Guess I was really wrong, it's getting hard to trust anyone anymore and I have a hard time with that. When you are this sick and struggling eeryday just to get through the day it isn't right that this is piled on top of you and you are made to feel stupid and like you are a hinderance. I am so afraid to just say no because of the possible reprocussions......even though there even be a question. I thought that if a patient says no...that no means no. I don't get it anymore.

Posted 6/26/2009 4:34 PM (GMT 0)
There is absolutely no reason why you cannot say no. I am fairly certain it is illegal for them to force, maybe even coerce, you into taking anything or doing anything that you do not wish to. No one should make you cry. That makes me sad. You are going through enough crap as it is. Going in to say no is not complaining. It is standing up for yourself. Your body your decision. It is not always easy to going to the doctor but you should be able to make the decision and be comfortable with the fact that you are in charge.
Posted 6/26/2009 4:39 PM (GMT 0)
Well, at least you got a scope out of it and know where you stand. I understand everything you are saying, trust me. I am sure many people here on this forum do as well. It is a sh*** (no pun intended) disease and a lot of people outside this don't really know what it is like. The trust thing is huge and I can't agree with you more on that. I actually went through 3 GI docs before finding the one I currently use. a lot of them just pushed pills and other meds and really didn't consider my thoughts and feelings as part of the equation. What kind of repercussions would be at hand if you say no? Keep your head up.
Posted 6/26/2009 4:40 PM (GMT 0)
Had a thought. What about backup? Taking someone with you when you go to the doctor visit. It might make you feel a little more confident and provide a witness should they get grumpy and not offer you candy.
Posted 6/26/2009 4:43 PM (GMT 0)
     It certainly sounds like you are being pressured and if it continues I would threaten them with a law suit.  I never heard of such a thing!  My GI doctor keeps bringing up Remicade in the hopes he will wear me down into accepting it.  He has another thought coming.  Even though I am old, I am a tough old broad and NO ONE is talking me into anything that I don't want to do.  I realize he is frustrated that he can't seem to help me out of these flares which are getting closer together.  But I am not yet ready to through in the towel.  It sure is upsetting when it takes so darn long to get out of these flares. 
Posted 6/26/2009 4:43 PM (GMT 0)
Just say no. I mean, I don't think I'd do a drug study unless I'd exhaused all of the approved meds first. There's just too much risk that it won't work or that you'll be given a placebo without your knowledge (if it's a double blind study). I understand that they have to do drug studies, but I think that you just need to give regular stuff time to work. Tell your doc no, and if you still get the "don't be a baby" attitude, find a new doc.
Posted 6/26/2009 5:18 PM (GMT 0)

You really should just be able to say no.

But if you're not in the US, and it kind of sounds like you're not in the US, you may be dealing with a different doctor-patient relationship than many people here.  In that case, having someone else help advocate for your best interests may be the best way to handle it. 

The situation you describe is certainly designed to put pressure on you.  You need to do the same in reverse.

Posted 6/26/2009 6:29 PM (GMT 0)
I wish I lived close by you I would love to go to the doctor with you. I have no problem telling them what I think. You pay them, they work for you, I know some of them dont feel that way but it is true.And there are lots of doctors out there. I live in a very small town and went threw 3 before I found one I liked. Did they even ask if they could let them in the room with you? Just remember they cant make you do anything that you dont want to do. And yes you have the right to say no, even if you have to scream NO at them to get them to listen. Some of these Doctors has let their profession go to their head.
Posted 6/27/2009 12:03 AM (GMT 0)
stand your ground for sure. I probably would do it if it were me, but that is just me. You have to make your own decisions. Feel better soon.
Posted 6/29/2009 3:13 PM (GMT 0)

potty girl said...
I wish I lived close by you I would love to go to the doctor with you. I have no problem telling them what I think. You pay them, they work for you, I know some of them dont feel that way but it is true.And there are lots of doctors out there. I live in a very small town and went threw 3 before I found one I liked. Did they even ask if they could let them in the room with you? Just remember they cant make you do anything that you dont want to do. And yes you have the right to say no, even if you have to scream NO at them to get them to listen. Some of these Doctors has let their profession go to their head.

Do you live in Canada too? I am just wondering because you said you come from a small town too as do I but I have to go the city of London ontario to get my treatments. I told the doctor when I saw him as soon as I got there that I didn't want to talk to the person in charge of the study that I only wanted to talk to him. He went very quiet and told me "you know , she has alot of knowledge and can help in other ways as well" which is not tre, she was only out to push the study drug on me and didn't want to hear any of my "excuses' as she called them. I am taking my mother with me this thursday even though I am nervous about that. She will definately speak up and tell them if they won't listen to me but I am honestly afraid of the reprocussions from the doctor. I know this may sound stupid and I don't know why I feel this way or exactly what I'm afraid of but I am truly scared to go here anymore.

Posted 6/29/2009 3:21 PM (GMT 0)

Arc said...
Had a thought. What about backup? Taking someone with you when you go to the doctor visit. It might make you feel a little more confident and provide a witness should they get grumpy and not offer you candy.

That is an excellent idea and now I am taking my mother with me. She tends to speak her mind to say the least so I am a little nervous but I need to do it. She actually did alot of research over the weekend on the trials they are trying to push me into so she is prepared.

I feel a little silly being 35 years old and taking my mom, but that being said a mom will protect her cub at all cost...lol

Posted 6/29/2009 3:22 PM (GMT 0)
It's totally unethical for them to be pressuring you. I'd express my thoughts in a letter to my doctor, with a copy to the state medical licensing board. Your participation in any drug investigation is supposed to be fully informed and voluntary.

I'm curious as to what standard, approved drugs have been tried to control your disease.
Posted 6/29/2009 3:34 PM (GMT 0)

Judilyn said...
It's totally unethical for them to be pressuring you. I'd express my thoughts in a letter to my doctor, with a copy to the state medical licensing board. Your participation in any drug investigation is supposed to be fully informed and voluntary.

I'm curious as to what standard, approved drugs have been tried to control your disease.

Hi Judilyn, I have been tried on Lomotil, which I am currently on and dexamethosone and prednisone but the prednisone was not supposed to be used on my because of a pre-exisitng thyroid nodule wich contains pre-cancerous cells. The specialists for that said prednisone could potentially quicken the growth and spread of the cells so they didn't want me taking prednisone . I have also been given Asacol but was told it wil only help once they get you in remission. The are telling me that they are runnig out of conventional meds but at the same time when I ask what is left out there they beat around the bush and don't seem to want to give me a direct answer. The surgeon I saw told me to exhaust all options before he would look at doing surgery because I was still young and he believed they should go down every avenue with meds before we took that major step.The funny thing is when I told the doc and nurse that I didn't want to do the study they basically said it wasn't a choice that I needed to start on something even though I told him I wanted to try Imuran and humira (i think I spelled that wrong) they told me humira isn't covered by most drug plans...that's the first I've heard of that and it doesn't make sense to me.
Posted 6/29/2009 4:30 PM (GMT 0)
That's a bunch of crap that Asacol will only help once you're in remission. I was in a HORRIBLE flare (15-20 episodes of urgent diarrhea a day) and have pancolitis (whole colon inflammed), and nearly got into remission using Asacol and Rowasa. However, I then got a tummy bug that threw me back a few steps, and my doc and I decided it was time to just get me well, so I did a pretty short course of pred and achieved remission.

As to what's left, I'd do your own research so you know. The ccfa.org website has a lot of good info, so I encourage you to go there. It's really a good idea to know as much as you can about UC and its treatment options. Lomotil will only help to curb the diarrhea; it won't help you get into remission. What about rectal meds; have you been prescribed ANY of those?

I'd really think about finding a new doctor. It seems this one is too concerned about getting patients to participate in drug trials. I mean, it's important to have drug trials, b/c that's how new meds get approved, but nobody should ever be forced/coerced into participating in one. That's unethical. I'd definitely complain to the state medical licensing board.
Posted 6/29/2009 5:24 PM (GMT 0)
Darla, my dear, I think you need a new doctor. Or at least a second opinion. Standard practice is to start you on one of the 5-ASA drugs orally and rectally. Usually Rowasa enemas and Asacol, although some docs are reluctant to prescribe enemas because some people don't like them and won't use them. If the Asacol doesn't help, they'll usually try Colazal or Pentasa, or maybe Sulfasalazine. If none of these work, they will often add in an immunosuppressant such as Azathioprine or 6-MP. If those don't work, there are the biologicals, Remicade and Humira (I think these are no longer provided under the UK NHS, but not sure.)

It's standard for all of the above treatments to be considered before moving to investigational drugs. If your doc isn't willing to try anything except Pred, he's either incompetent or far to intent on getting subjects for his research.
Posted 6/29/2009 5:44 PM (GMT 0)
No one can force you to take a medication or participate in a drug study. And no one should receive the mistreatment or be talked to the way you describe. I agree with Judilyn: find another gastro doc in a different practice.
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