My GI says I'm in denial

Today I had my first follow up appointment with my GI since I got out of the hospital.  I told him  I didn't want to take the second dose of Humira because one: my hands, my behind and my legs are now in what appears to be in an early states of a rash and two: I'm not sure we've tried everything before the we went to Humira. I also think its messing with the way I process info but I didn't even get to that after he dismissed every concern  I had.

We've never tried medicine from both ends. He said that's like putting a cup of water on burning house. I asked about Probiotics, he said its not a cure.  He won't talk about diet or suppliments at all. He just told me I was lucky because another patient of his couldn't afford the meds so she got her colon out and now she has her life back.

He told me I had to take the humira and he pretty much wouldn't talk to me about any other options. 

Not sure what to do next. Should I take medicine that I think I could have be having a reaction to that is listed as one of the reasons to stop and call your doc.  Is it too much to want to talk to a doctor and have them listen to you, to talk about alternatives, to explain what's going on with out telling you that you are acting like a child.

So frustrated!!!!

 

I second looking for another GI as it might take a while to find a good one. Also, have you talked to your primary and do you have a good relationship there? Going straight to Humira seems like a rush. Also, it sounds like this GI is trying to scare you into doing what he wants. Plenty of UCers keep body parts without going to biologics. Looks at some of the sigs here and search around and ask questions.

Julia,  sounds to me like you need a new doc - one who will listen to your concerns.

There are plenty of things you could try: rectal meds, probiotics, diet modification...LDN, low dose naltrexone.

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

ITA.

I do think you should switch GIs if you don't feel like your doctor is listening to your concerns. However, I will say that a "top down" approach (going straight to biologics) to treating an initial flare, if it's severe, is supported by recent research, especially in pediatric patients. There's evidence that suggests you're more likely to achieve and maintain a long term remission by starting with an anti-TNF drug, rather than waiting for the traditional front line meds to fail.

I'm a few years older than you but my first flare has been a doozie, I've been through most of the treatments available, and I sometimes wish that my GI had started me on Remicade straight away based on the severity of my pancolitis when I was diagnosed.

This pisses me off, and makes me grateful for my doc. Do you think the Humira is working at all? If so, I would take it and also try the benedryl. Hipefully, you did the loading dose and when you drop down to one shot every other week, the side effects will subside a bit. But your doc should not have brushed off your concerns and my doc always talks to me about my options and the pros and cons of them. Always starts with the least evasive and works his way down. I would start asking around for referrals (your hospital nurses should have a good idea, neighbors, friends) Good luck, and remember>>this is your body and your decision.

UC is a disease of denial.

Sue

Also, he says you MUST take and are lucky to have the option of taking Humira, even if you're experiencing side effects and the compares you to someone (the unlucky one) who couldn't take the drug and now has her life back? Your doc is confused but unfortunately this is typical GI logic in my experience.

I don't think I could refrain from giving your GI a piece of my mind if I were his patient! I believe so much in natural supplements and remedies and only take medicine if I have to for any condition. I have changed GI's many times and now I haven't had one for the past 10 years or so. It's your body and you have a right to say what goes in it!!

killcolitis said...
Pluot, that evidence is for CD not UC and biologics have proved to be less effective for UC than CD (requiring higher doses, more frequent infusions and becoming ineffective sooner). The "top down" approach is being adopted by more pediatric GIs but there is still a debate about if this is necessary (for UC especially, less so for CD). I do agree that you need a new doc. He or she might be giving you the most up to date information and their best opinion but you're not a child and even if you were your concerns need to be heard and addressed. I can't advise if you should take the drug or not obviously but if it's possible I would look for a new doc.

Just playing devil's advocate on the research side of things, since it's possible he's not being a TOTAL quack... other than that I agree dude sounds like a dick

There are good doctors out there too, so don't give up! My favorite GI was one who was laid-back and basically encouraged me to do what worked best for me without being pushy about anything.

you likely are in denial. the question is will it be a good thing. you roll the dice and make your best decision. maybe your case turns out good. then a bit of denial (or stubbornness) is great. but maybe not.

some people inexplicably pull out of flares. some folks report managing their remission with nutrition and supplements. but it is comparatively few.

if you do not want a particular drug, you are the one to decide. if you do not feel comfortable with your GI, you should get another GI, or at least a 2nd opinion.

But, if the GI's practice is full, and you do not want the therapy being offered, there is a gray area where he/she might say they do not want to work with you. Two way street.

What folks here say is supportive, and that matters a lot, but also does not establish the truth of your case. They only have your side of things, and only what you choose to tell, and only how you told it. Of course the GI comes off as an ass. If someone was in denial, they would say what you say and elicit the response you are getting. We can't actually know. The nature of the internet.

Plenty of people have serious flares and avoid surgery. I find it illustrative that you counfound Humaria and surgery. It suggests a lot of fear. That is only natural.

The points above about whether there has been enough time for the Lialda and Imuran to work are good points. It might be reasonable to wait a bit on Humaria. ... But we do not know how ill you are. Again, the nature of the internet. Is it pancolitis? Is inflammation moderate or severe? How serious was it in the hospital? If things are really bad, 5-asa drugs might be like putting a cup of water on a fire. Your GI may be right.

Still, you decide, it is your ultimate choice - good or bad. I have chosen to hold off on immune suppressants. I decided. Fortunately I did not have to switch GI when I decided.

Get as informed as possible; insist on the right to make your own choices. Try hydrocortisone enemas (they work faster than 5-asa). Try LDN. Take a lot of probiotics (although only some get dramatic results). But, do not be too afraid to consider that you are in denial. Possibly you have very severe disease and denial could make things worse.

Good luck.

Post Edited (DBwithUC) : 12/26/2012 10:09:13 PM (GMT-7)

just curious - what exactly is the definition of severe pancolitis ? as opposed to regular pancolitis ?