My GI says I'm in denial

Denial isn't a symptom of youth or immaturity. It's a natural part of the grieving process that we all go through continually when we have a chronic condition. We grieve for what we were, what we might have been, for our family and friends who are affected by the changes in us. It's healthy and normal. So even if you are in denial, that's not something that needs to be stamped out.

One of the things that is really important for us, I believe, is hope. If we don't keep hope for better things in our hears, then we might as well not be alive. Sounds to me as if your doc doesn't realize that. I agree it's time for a new doctor, one who will listen to your concerns. Yes he has to warn you of the possible benefits and consequences of decisions, but the decisions are yours. If he truly doesn't believe anything but Humira will help you, he'd be wrong to treat you with things he is convinced won't work. On the other hand, if you don't want to continue the Humira that's your choice and it has to be respected. So your philosophies may be incompatible and it's time to move on.

Different things help different people, and most of us with difficult IBD can't be satisfied until we feel we've tried everything. So do what you need to do, and believe that we all go through this and you have plenty of company and support here.

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

mild, mild/moderate. moderate, and severe are characterizations of inflammation and degree of ulceration. Mine was mild/moderate. I do not have the exact histological descriptions on hand. it is a classification system in use.

see: www.healingwell.com/community/default.aspx?f=38&m=1170861

www.webmd.com/ibd-crohns-disease/tc/types-of-ulcerative-colitis-topic-overview


@gardener: don't be so quick to classify a GI you have never met as "behind the times". For one thing Lialda/5-asa is in use. There may be room for a higher dose, and as discussed, the use of enemas. But it is in use.

Probiotics help some mostly with symptoms and food intolerances. For a few, rebalancing the gut microbes seem to have been a final step into remission. This is far from working during a severe flare. It might be helping the gut to heal by adhering in place of bad bacteria, and it might have some immune regulating function, but the research is very inconsistent and unclear. It is not a front-line treatment at this time. The GI's comment that probiotics would not help (possibly in just this case, we don't know what was actually said) is not a sign of ignorance or being behind the times.

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It is great to be supportive and encouraging; but we should be careful not to lightly encourage a new UC patient to ignore medical advice. this is their right, and it might be for the best. But here is a young person, new to UC, and likely in some early UC stage of grief/denial. the time for education has not really been there. the decision to refuse treatment should always be a serious one. Just because folks here like to bash docs is no reason to so casually tell someone there doc is useless and should be ignored.

Post Edited (DBwithUC) : 12/27/2012 8:53:23 AM (GMT-7)

we should be careful not to lightly encourage a new UC patient to ignore medical advice.

Encouraging others to seek a 2nd opinion from another GI is not the same as advising them to ignore medical advice.

As for being in denial, it worked for me being diagnosed at 15. I scoffed at my GI when he told me I needed to be in a support group. I'm not recommending it because I know everyone is different and maybe there could have been serious consequences, but I believe a combative attitude was part of my success along with refusing prednisone and other strong drugs at the beginning. I took them my first flare and that was it (which was very severe and covered entire colon). I'm just encouraging about seeking other opinions and I believe your own research and education is power.

I think you should at least have another visit with your doc. Bring a list of questions and med regimen options with the intent that he'll at least give you support and try them.

You have the right to openly say...."please I need your support to work together to try this first. At least I won't feel resentful that you didn't offer them to me at all"...or something like that.

q

Ok, I was very sick when I went to the hospital the first time. I could not keep anything down. I went in on a Wednseday, and I was discharged on a Saturday feeling almost as bad as I did when I got there. I went back the following Tuesday.  The second stay was very different from the first. Both visits they gave me IV steroids, but the second visit they gave me meds to stop the D, they started gave me a cortizone enema. If I was in alot of pain they gave me pain meds. All these efferts were to get my flair under control. So I keep asking myself what if. Why were these measures given with Humira and not before?

I do feel better on Humira, but I have read about a lot of awful side effects and wven thought I was having on of them. Those side effects are real and some very very serious so I am concerned about that. I guess  put Humira and surgery up there together partially because of my doc. If this doesn't work then the Humira is that doesn' work then surgery.  He offered up surgery just a few days after Humira.

 

Maybe I am in denial. It was very hard to listen to my doc once he said that especially since he would't listen or talk to me.

I understand that my doctor if telling me what he thinks is right but I'm the patient and I least want to be heard.

I do have a parent in this with me. My mom --she was the one who found this board.  She still does a lot of reading and researching with me here and in general. She has been very supportive. She has the same concerns I do, but she is leaning towards me taking the Humira at least long enough to heal.  My last CT scan showed almost my entire colon inflamed so she thinks that I should take it at least long enough for a colonoscopy  or CT scan to show that my colon is healed and then ask for advice on how to taper off the drug. She thinks I should fight once I'm stronger.

I just wonder if Humira is a drug that you can taper off, or does your body start to get dependent on it.

I think I probably will follow my moms advice, at least for now.

Thanks so much for all the comments.  I appreciate you taking your time to help me.

 

Call the manufacture of Humira and talk about your side effects PLEASE  800-448-6472 they can help you! They'll tell you how many people, percentage wise, who gets this rash.

I had my loading dose and no rash. How long have you been on Humira?

that Dr should have his license revoked.  That is awful.  Joking to a patient that he wishes he could charge extra for telling them they are in denial - what a super jerk.  And saying a patient MUST take a certain med.  So not true, there are choices and its a patients choice to take a med or to discuss other options.  Any Dr that will not even discuss options is being unreasonable and is doing a serious disservice to the patient.  That Dr is not worth wasting your time going back to.  There are Drs out there who will discuss med options and will listen to your concerns.  Good luck. 

I had a doctor just like that. Unfortunately he was assigned by the hospital and not my choice. I lost my colon because of his bad decisions. Please get a new doctor as soon as possible. I am almost 60 but he talked to me like I was 4. It was a nightmare!

I said no to biologics and surgery and was in remission for 15 years. I did fine until this stupid doctor gave me azathioprine during a moderate flare. I turned out to be horribly allergic to it. I developed mega toxic pancolitis for the second time but was not treated with cyclosporine because he said I "was just being oversensitive to pain." The day my colon perforated he told me I was going home because I was just staying there for the morphine.

Luckily a nurse went behind his back and called a surgeon. She saved my life.

Never, ever stay with a doctor who does not respect you.