Surgeon didn't know!

[Mikek]

I went with Jenny to visit her colorectal surgeon this morning for a 'follow up' consultation after she had a recent colostomy operation. "I see that you have Wegener's" he said " is that a cancer?" Neither Jen nor I are medically trained but here we were describing granuloma polyangiitis to a senior surgeon! It really demonstrates how this condition which,up unto a few weeks ago, we had never heard of, is so little known.

[Dirty Don]

Also shows how some docs are ill prepared for WG, thus the need to consult or see experienced WG docs with all or most of anyone's needs, or at least have one's primary docs informed early on as possible. I've made my dental people 'run' into their offices to consult their med books...worked out, but was funny and telling at the same time.

[pberggren1]

That is insane a surgeon would not know.

[mishb]

Well I guess he wont make that mistake again.

I reckon as soon as he possibly could - he went and looked it up.

[Mikek]

I don't know, he just had a blank look! He told Jenny that he wouldn't reverse her colostomy until the Wegener's had cleared up.

[mishb]

I think once you are on pred and also an immunosuppressant, they try to avoid any operations if they can.

That's how it is with those who have a saddle nose, and my ENT also said that they can't do anything about the septum in my nose until I am in remission.

One day :unsure:

[Mikek]

I think once you are on pred and also an immunosuppressant, they try to avoid any operations if they can.

That's how it is with those who have a saddle nose, and my ENT also said that they can't do anything about the septum in my nose until I am in remission.

One day :unsure:he did say that he could operate with methotrexate in the works.

[mishb]

I guess a lot of suffers of Crohn's would be on MTX and sometimes they need to operate.

At least he knew what MTX was :smile1:

[Dirty Don]

I think once you are on pred and also an immunosuppressant, they try to avoid any operations if they can.

That's how it is with those who have a saddle nose, and my ENT also said that they can't do anything about the septum in my nose until I am in remission.

Quite true about surgery, but, they can and they have without much problem (well, OK, I almost died, sheesh) and I survived it. Also, my ENT did my deviated septum whilst I was still heavy on mtx and pred, no problems. But, she didn't do it the standard way.

[drz]

Quite true about surgery, but, they can and they have without much problem (well, OK, I almost died, sheesh) and I survived it. Also, my ENT did my deviated septum whilst I was still heavy on mtx and pred, no problems. But, she didn't do it the standard way.

They wouldn't do my BAHA surgery or TURP surgery until I was in drug remission for at least a year or more.

[Debbie C]

I don't know, he just had a blank look! He told Jenny that he wouldn't reverse her colostomy until the Wegener's had cleared up.
Did you tell him that might be awhile.:rolleyes:

[Mikek]

Did you tell him that might be awhile.:rolleyes: I didn't know wat to say. When we saw Jenny's ENT doctor today he wasn't really surprised , he commented along he lines that he didn't know about colorectal surgery. I suppose it's a case of each knowing his own special work.

[Dirty Don]

I didn't know wat to say. I suppose it's a case of each knowing his own special work.

Not so with AIs...the docs and the patients need to be aware that AIs tend to mimic other diseases and affectations. It's the conglomeration of symptoms simultaneously producing the effects of WG. Hence docs, nowadays, should/need to be aware of what is potentially incredibly dangerous.

[annekat]

I agree it's nuts for docs in general not to know about Wegs and other AI diseases, rare or otherwise. They went to medical school, they shoud have an overview of all diseases, the interactions and coexistences between them, and the mimicry of symptoms, etc., etc. It is about the whole body, not just what they specialize in. All the docs I've run into, as well as PA's and nurse practitioners, have some awareness of WG, what it is, etc., but their knowledge of it is still pretty sketchy. This forum is where they can learn a lot, just as we have! If only they would take the time to look it over.

[Mikek]

I agree it's nuts for docs in general not to know about Wegs and other AI diseases, rare or otherwise. They went to medical school, they shoud have an overview of all diseases, the interactions and coexistences between them, and the mimicry of symptoms, etc., etc. It is about the whole body, not just what they specialize in. All the docs I've run into, as well as PA's and nurse practitioners, have some awareness of WG, what it is, etc., but their knowledge of it is still pretty sketchy. This forum is where they can learn a lot, just as we have! If only they would take the time to look it over.
But then they'd know what we think of them and they'd give us syrup of figs or some other equally potent poison. Let sleeping dogs lie.

[Alysia]

2 gastro docs I visited, didnt know anything about WG and had the insolence to invite me to do colonscopy (they earn a lot of money if Im coming to do it by them) and eventhough I asked about risks, they said there arent.
later, I found very experienced gastro doc who said that my colitis is because of WG, that there is no need to do colonscopy. that findings of colonscopy are correct only in 30% of tests. that he saw WG involvement in colon, eventhough it is rare, and that finding granulomas in the colon can be indication to both WG and crohn.

[annekat]

But then they'd know what we think of them and they'd give us syrup of figs or some other equally potent poison. Let sleeping dogs lie. Well, I figure the only docs who read this forum are the docs we would think more highly of in the first place.... the rest of them will continue to be egotistical jerks who can't admit when they are in the dark about a medical condition.