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My appt today with new GI (long)

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Crohn's Disease
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Posted 8/24/2007 6:35 AM (GMT -8)
Well I told them I had no medical records cuz I couldnt remember the doc in the other state and that the last doc "thought" I had crohns. Although I really know I was dx with it but I need this insurance...I need to GET BETTER. I am in a bad position.

So here's the outcome:  he wouldnt start me on jack until he scopes me. So the down side is I live with pain for 2 more weeks till colonscopy. I have a small bowel followthru scheduled on Tuesday morning. They took some extensive bloodwork including a promthesis IBD to determine IBD.

Funny thing was the discussion on bone pain. He doesn't think my bone pain is from the IBD. I was like "what?????"  I mean I have always thought they were related but he said normally Crohns causes spinal pain and pain down into legs ankles and toes.

My bone pain is in my right knee, right elbow, wrists,fingers but more so in my clavicle/shoulderblades, ribs and back...or lets not forget my jaw!

So he said he cant really help with that confused    referred me out to a rheumy who he said will probably take months to get in to.

BAD PART...Im sad almost crying sad   cuz I dont want to have to wait months to feel better! I pop Ibprofin and nsaids like candy...which he also said I need to start taking prilosec/pepcid when I do that.  I just want someone to give me some relief but its a waiting game.

I waited to get insur, then waited for this appt, then I wait for colonscopy, and rheumy who knows how long that will take. Sorry I know everything cant be instanaeous (sp) but last time I flared...I got instant relief. I guess I have to be dying for someone to care that Ive been in pain for over 6mths.

Well enuf complaining...Im thanking God for what I do have right now!

Posted 8/24/2007 7:39 AM (GMT -8)
IF you have IBD, DO NOT take NSAIDs. They cause irritation and will make your IBD worse. I know you're in pain, but it really does sound like your doctor is on the right track. Without prior tests, it would be irresponsible to put you on any kind of steroid or immunomudulator. A SBFT, then scope is very appropriate. It's hard, I know, just try to hang in there for another couple of weeks and know that if the blood work shows anything really problematic I would guess that the doc will move up the time frame.
Posted 8/24/2007 8:13 AM (GMT -8)
I agree with Frankj you really need to stop those NSAIDS yesterday! They will make things 1,000,000 times worse, trust me, been there done that. As for pain relief maybe you can get into a family doc and get them to give you something till all these scopes and tests are done and you see a Rheumy.
Posted 8/24/2007 8:55 AM (GMT -8)
Sorry to hear you're in such pain. I know the feeling. At any rate you should be able to get an appointment with a rheumatologist sooner than a month I would think. It may take a couple weeks, but since you don't have one yet I'd call around to any of the one's covered by your insurance and see who can get you in the fastest.

I think I remember you saying you were in the Baltimore area in another post. If so, I see Dr. Melissa Hawkins-Holt as my rheumatologist. I don't know what area you're in or how mobile you are. Her office is in Ellicott City. There's also 5 or 6 other doctors in the practice. It usually takes me 2-3 weeks to get an appointment, but she only works part time so maybe one of the other doctors would be a bit easier to see.

As for your GI's comment on your arthritis pain. I'm currently experiencing exactly what he said about the spine, feet, and ankles. But that's a recent phenomenon developed over the past 5 months. Previously I've had pain at some point in every joint in my body including as you mentioned your jaw. So don't pay attention to him. I'm betting it's Crohn's related. Although it's possible you may have some other type of arthritis on top of the Crohn's. At any rate. It's definitely best to see a rheumatologist about it.

And I also agree that you should stop taking the NSAIDS. It's best to stick with Tylenol. It's pretty much the only over the counter pain killer I can take that doesn't upset the intestines.

Good luck!
Posted 8/24/2007 12:25 PM (GMT -8)
@ baltcrohns....I used to live in Bmore I actually moved to GA a year ago so now Im stuck in this poor health system...i swear not many down here know what they are talking about!!!

but I appreciate what ya'll are saying but without nsaids I can barely move..I know they arent good for me but the arthritis is eating me up and tylenol does NADA for me

hopefully I will get some relief soon
Posted 8/24/2007 2:36 PM (GMT -8)
Hi Songstress You sound miserable and I can understand why it is hard to wait off the pain.Is your Cd flaring or are you mostly having body pain? If it is your CD , pains and the big D you could try low roughage diet for awhile until you get your scope. A few days bed rest might help the joint and body pain.I am having some but think it might be from the weaning of pred. again, but the tylenol does help me . lol gail
Posted 8/25/2007 6:04 AM (GMT -8)

I can tell u from experience that weaning off pred does make joint pain and bone pain worse but after a few days it gets better! GL I know its a pain...pred is an evil drug! lol

I wish I could say Im having one more than the other. I would say Im having ab pain and bone pain and they equal each other...doc finally gave me some darvaset to try and help some of the pain but its caused me to vomit!! so dont know how long I can take that

Posted 8/25/2007 4:29 PM (GMT -8)
Songstress,
My heart goes out to you, I know you've probably read some of my post and I'm going through some of the same stuff only somewhat different. I don't have bone pain but I have adominal pain that makes me want to double over. My doc in IN was always available to me and had me on a strong pain medicine knowing I have a high tolerance (not sure why) but down here everybody seems to act like I'm drug seeking and it really *^#**es me off. So now I'm going to learn to learn to deal with the pain with tylenol.lol but I don't have a choice at this point. I'm sorry but like you if I need an NSAID I take it. Just think only a couple of more weeks but don't get your hopes up too high that they will do the scope and put you on meds the same day. I know it didn't work that way for me. And guess what when they did do meds they just increased the ones I've been on including the Pred back up to 40mg. I just hate that I just don't like that drug or all the things it does to me. I'll keep you in my thoughts and prayers and at times it helps to remember things work out just as they are suppose to.
Posted 8/25/2007 5:47 PM (GMT -8)
thanks so much Nana!! Its very encouraging to come on here and know someone understands the way I feel or has been through it (even tho I wish none of us were going through any kind of pain)
You will be in my prayers too!!
Posted 8/25/2007 5:52 PM (GMT -8)
I know you're in a rough way. I disagree with your GI however concerning the pain. I certainly have arthritis caused by CD that is in my knees, wrists, and at times in my jaw. It comes where it chooses. Anyway, the NSAIDs can actually make the CD arthritis worse because the NSAIDs can begat flaring which in turn begats arthritis... I hope you can find out something soon.
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