Desperate. Really.

[ThatsWhatSheSaid]

I am having a lot of extra-intestinal symptoms and my doctor does not believe that the crohns is currently severe enough to explain them. Does anyone have any insight on this?

I feel almost positive the the cause is the crohns as everything that I have happening is crohns related but during a colonoscopy and EGD last Thursday, the inflammation was mild. He still wants to put me on prednisone but believes that the issue is function, not structure (at least right now). My concern is that (even though I don't know that I would WANT to go on stronger meds) if I don't go on something to properly get this under control it will just continue. But I don't know if I am just way off base and maybe he is right.

Do the intestines have to be in really bad shape in order for the crohns to manifest the extra-intestinal symptoms?

Please help.

 

[Gculk]

No, it's not like the Crohn's is shooting a machinegun at your guts and missing a few that causes extra-intestinal symptoms. The extra-intestinal manifestations are generally either malabsorbtion (wherein you are not getting proper nutrition 'cause your bowels are diseased), or inflammatory responses of their own.

As such, any treatment for systemic inflammatory disease will (hopefully) have effect on both the bowel symptoms, and the general systemic symptoms.

Nathan

 

[ThatsWhatSheSaid]

Well, that's the thing, the only time I feel good is on Prednisone. He had said to me a couple of months ago that is the indicator that the symptoms are from the inflammatory issues- that they respond and get better on prednisone. But it's like after looking at my insides last week, he is skeptical. It makes me feel crazy. And he is kind. He didn't undermine my experiences/suffering at all. He said multiple times that just because there isn't an easy visable fix doesn't mean that the issue isn't there. He just doesn't think that is what is causing it sincerely. To the point where I am starting to believe him, but it just doesn't seem right to me because everything that I have a complaint for is a crohns effect/symptom.

 

[Cat-a-Tonic]

Hi, fellow Wisconsinite! I don't know if we've properly "met" yet. Greetings from Madison! Can I ask where in the state you are from? (No worries if you're not comfortable with saying.)

And I can SO relate to pretty much everything you wrote. I'm technically undiagnosed although my GP has said all along that he feels this is IBD. My GI didn't know what I have, until I tried pred and it worked wonderfully for me, then my GI said okay, it's IBD. So I went on Entocort and now I'm on Asacol and in remission. But lately my GI has said he feels I have both IBD and IBS, and that since I'm in remission, any and all issues I have nowadays must be due to IBS (functional disorder). I feel like that's BS - IBS meds don't work for me, for one thing, some of them even make me worse! But stuff like pred makes me feel super fantastic. Oh, and I am undiagnosed because they've never found anything on any of my tests - no inflammation, no ulcers, nada. So, symptoms definitely do not necessarily match inflammation levels! My inflammation may have been on a microscopic level and my scopes looked stellar, but I still felt awful all the time.

So long story short, I have been through some very similar stuff and I can totally relate. It is frustrating to say the least! All I can say is, don't let your doc make you feel crazy - you are NOT crazy. If you don't feel comfortable taking a particular med or going down a certain route of treatment, tell your doctor your concerns. It's your body and you get to make decisions about it! If you don't want to take pred, there are milder steroids (Entocort/budesonide) or you could try something in the mesalamine family like Pentasa or Asacol, those are very mild meds too. Being undiagnosed, my GI won't put me on anything particularly strong but I have been on both Entocort and Asacol with good results and few, if any, side effects.

Good luck! And welcome again from your fellow Wisconsinite.