OK, we have an appointment with hubby’s GI on Friday, and would like to bounce off a few ideas here.
Although his GI says his CD is mild, I think we disagree! Diagnosis was week before T-Giving right after his colonoscopy. He has been on pentasa only (6 pills a day) since then. BUT--developed a nasty (to us anyway) fistula in his bottom crack. That was treated with Flagyl + Cipro + Canasa for 3 weeks (but that course has been over for a few weeks now); fistula is still bothersome, as in it is open and drains, and is painful. We are starting to feel like the “small guns” his GI is using (GI’s words not mine) are not working and I for one would like to see a more aggressive treatment plan. His assistant seems to agree—when I called her to give her an update on the fistula, she said “it’s time to step up treatment I think”.
Here's another twist: DH has been taking oxycodone since about last March; it has taken us this long to get some kind of answer to his pain/discomfort/D/stomach problems. I know we should be thankful that it was only 9-10 months, but he is in soooooo much pain. Once upon a time primary doc gave him a referral for a pain management place, but they would not even talk to us without a specific diagnosis--they kept saying "what is wrong with him, what is his diagnosis?" and we kept saying what the doc told us: "intractable pain". They wouldn't even see us. That was back maybe in Sept/Oct.
I really think that the pain he is experiencing in his hips, pelvis, tailbone, and other places in that general region are related to the Crohn’s. He has had so many tests (MRI, CT scan x2, Ultrasound, Lumbar Spine, nuclear bone scan) all which we are told show nothing remarkable!
Where am I going here…..sorry, I am not sure! I just want him to have some relief from his pain! I guess what I am asking is:
1) does it sound like we need to get more agressive with treatment, or are we just being impatient?
2) if he ends up with prednisone, will that help with the pain?
3) how do you go about getting pain management? Would Crohn’s be enough of a diagnosis now? Should we try to get a referral from GI, stating he has Crohn’s related arthritis?
Thanks for reading all this! And thanks for any advice you can offer before we go see the GI! I have learned an incredibly lot from reading this forum, and I wish you all the best fighting this disease!
Hi, I gave your thread a topic so people can find it easier.
Post Edited (newcrohnswife) : 1/27/2008 3:11:08 PM (GMT-7)