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Hubby's GI Appointment on Friday

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Posted 1/23/2008 7:30 PM (GMT 0)

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)

Posted 1/23/2008 7:42 PM (GMT 0)
My wife and I have talked quite a few times about "mild" Crohn's... That's what my GI is calling mine. Even "mild" cases cause such amazing discomfort and quality of life problems, it's just amazing to think what people with severe cases go through.

I'm no Doc (obviously), but it seems that most people with fistulas fall into the "moderate to severe" cases of Crohn's. Well, anyway, arguing syntax is pointless.... More to the point: get your GI on the ball. Your hubby needs fistula related treatment, and fast. If your current GI is not willing to do it, then change GI's until you get the treatment he needs. Fistulas are serious, and need to be treated as such.

It seems to be the normal course for GI's to start out with the "small guns" (mesalamine, entocort, steroid enemas), then move into the "medium guns" (corticosteroids, et al), then on to the "big guns" (biologics and immunomodulators) as their normal course of treatment, stopping at whatever step along the way induces remission. At least, that's the way it goes with us "mild" crohnies. Throwing a fistula into the works should be enough to warrant a more aggressive treatment plan, though.
Posted 1/23/2008 7:44 PM (GMT 0)
Well fistulizing disease is by definition not mild, so a step up in treatment may well be wise. However, I would caution against making the jump all the way to remicade or Humira. Maybe 6mp or imuran to give those mid-range meds a chance to work or not. As for the hip/back pain, yes that sounds a lot like CD-related arthritis, and yes the pred would probably help with all of it, since its main function is to reduce inflammatory responses. But an accurate diagnosis of those allied problems would probably require some clear findings on MRI studies and the like before a pain specialist would undertake to treat him long term.

Posted 1/23/2008 8:03 PM (GMT 0)
Mod:  thanks for the title; realized almost immediately that I had done that; is there an edit post function that I missed somewhere?

CrohnsDad: you said it about quality of life being terrible sometimes even with a "mild" case!  My DH is actually a stay at home Dad and our children are homeschooled, and we have said many times over the past 10 months how we are glad he wasn't having to deal with getting up and going to work every day.

MikeB: thanks for the meds advice; if his MRIs and whatnot are approaching a year old, should we request fresh ones to see what shows up?  are there blood tests we should request?  we are very afraid that he will still have trouble getting in to see pain people, and while we don't want any doc to "fudge" information, we really really need to have relief from the pain!  I am thinking we will ask for the pred and see what happens.

Post Edited (newcrohnswife) : 1/27/2008 3:12:41 PM (GMT-7)

Posted 1/23/2008 8:16 PM (GMT 0)
Yes in your place I would definitely ask for some new images -- lots can change in a year.

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