irrational fears and despair

i guess that we all feel like this at times, but i have had such a long time in the flare zone that i don't know if things will ever change. i was diagnosed in 3/07 and have been doing a downward spiral ever since. i have been on remicade, humira, pentasa, imuran, prednisone, you name it. i built up antibodies to the biologics and the steroids made me so depressed that i could not stay on them. i am waiting to try and find out what the next step will be. i have disease that is in the smallest part of my small bowel, so it is hard to see except with a pill cam. my sero 7 was positive for IBD in aug 07- that was when i was finally taken seriiously. my major symptom is severe abdominal pain. that presentation alone makes people suspicious that i am exaggerating my disease to get pain meds, even thought  i have arthitis, low grade fevers, diarrhea and joint swelling. I have develped a malar rash and a high ANA after the biologics- at times even my toes and soles of my feet hurt. i am pressing my GI to do further diagnostics to have a clearer picture of what is going on, and she keeps asking me if i am taking NSAIDS and not telling her (my last pill cam showed ulceration and patchy inflammation in the duodenum, jejunum and ileum).  I feel like I have to prove to her that I have this disease, and it is humiliating, especially since I am a health care provider myself. It is as if she thinks I am painting a picture of an illness that I learned from books rather than experiencing it myself. I never go out anymore, and I used to be so social. I feel fatigued all the time, have gained 30 lbs and am on chronic pain meds. if you would have told me 3 wears ago that this was going to happen i would not have believed you. I take antidepressants as the unrelenting pain has made me very depressed. I  wear a tens unit, go to PT, see a pain psychologist. I do all the right things as best I can. I manage to work full time because I need the health insurance. I have no family that could help me if I lost my job. That makes me even more frightened. I feel ill so much of the time that i have started avoiding my friends because i dont want to keep backing out of things.

I know that this sounds like such a pity party, but is this something that we all go through? Is this all I can expect? I am trying to explore nerve blocks to combat the pain and stop needing pain medicine, but it is a slow process. I feel very alone and scared, and I see so many people just like me in the health care system today receiving the same treatment. Why is it so hard to believe that someone can have crippling abdominal pain that may not be visible on a cat scan? who would want to make up this disease? i am sorry for whining but i just need a little shot in the arm

Survivor49 I am so sorry you are suffering so. I am wondering if you can't get a second GI opinion. Evidently this one is really not helping you. No one should have to suffer for 2 straight years. Generally when the rule out all meds the next step is to look at surgery. I myself have had 2 resections and I will tell you what made my decision the 2nd time, was "what was my quality of life"? And it sure sounds like you have absolutely no quality of life right now. I used those exact words with my doctor and that finally got things moving.

But for now, I really think you need a second set of eyes to go over your results. Maybe another GI can find out the real story and get you back on the road to remission.

Sending healing hugs and prayers your way.

Hugs
Gail *Nanners*

survivor...I can sooooo relate. Mine has also been out of control since 2007 with mini- major flares interspersed. It is resistant to all but prednisone it seems, and, since I like seeing my face in the mirror, I am resisiting going up again on the steroids (been on them for about 2.5 years straight now, and now only down to 5 mgs woo hoo).

I agree with nanners...find another doc that meshes with you and has the same ideals as to the quality of life is a big plus. My fist GI was about 80 something with his patients all being 90 something. Me, I'm 30 something...I expected a WHOLE lotta difference than what he was giving, and by getting that second opinion I found the BEST ever Doc...

And pity party...I'll join you...it's OKAY to have one...this disease BITES!!!! Heck, I wouldn't wish it on my worst enemy. I think some medieval tortures tried to mimic the effects of this disease.

And yeah, the users(or should I say abusers) have given all docs and med personnel the willies and (sometimes) cases of the bad manners...and they take it out on us. There IS a patient bill of rights and that INCLUDES pain management...you can remind them of that....(usually in the state medical board pages as well...)

Oh, I failed to mention...I see a Pain specialist too... Best thing I ever did...that way, I can and DO tell my GI about the pain(as it is related to the amount of disease)...but I let the other doc best control how to control the pain...

They are better versed on what works and why (some meds are better for GI pain than others, and there are different delivery systems that may be better for you)...Many docs are afraid of prescribing any kind of pain reliever, however, the PM doc (not sure if pain psychologist is same...mine is board certified in Neurology) is usually versed in local and state laws and wants you to feel comfortable. (You have a right to try and get pain relief)

Again, this site is great for letting out feelings of despair and fears...(not so sure if they are irrational...x+y=z...pain+disease=fear/despair....fits a pattern...fits reason...totally rational)...so come here often and let loose...it's nice to know you are not alone...

Yeah, I think we all do end up somewhere close to where you are at times, when things get bad. It's not a pity party, it's actually a frustrated drive to have things better ! It's dire to be so frustrated, but at the same time it is good to still have that expectation that you can and should be healthier.
I'd agree with getting another doctor - you keep going until you find one that does do you some good and will listen - but failing that, I'd be inclined to get your pain management professionals to talk to your current GI. And don't be afraid to ask her, why is she so inclined to doubt what you are taking ? ( I mean, it's not like NSAIDs are not immediately awful and excruciatingly painful for a Crohnie anyway - what idiot would take painkillers that CAUSE pain and bleeding ? !) Has she had previous experiences that make her mistrustful ? What would she need to convince her that you do have this problem ? If the worst comes to the worst, ask her outright if she is not the problem - "If I can't understand this, it must be the patient that is the problem". (I had a liver specialist that thought like that once, my blood pressure still rises when I think of her.) Sometimes that will set a doctor back on his/her heels, make them think... and if it doesn't, I say again, get another doc, what do you have to lose ? At the end of the day, it is not what the bad doctors or other clueless people think that matters, it is what the good doctors and yourself think, and what the truth actually is.