Wegener's digestive tract involvement

[Dirty Don]

Bad day or not, he's still supposed to be a professional...listening is part of this game...jeez. If he continues his attitude, I'd think about a new one...but that's just moi.

[windchime]

Sorry he is such a jerk to you, but Don is right he should be professional. I didn't have a good reaction to mentioning the group either so now I just let them think I found things out by doing my own research. Some won't like that either. It's sad that your Doc isn't available to you in the event of a flare. If you have a good relationship with your primary maybe you can begin there. The hospital gastro doc sounds promising, does he or she have a private practice? Although some docs may be brilliant they still need to listen to their patients and respond accordingly. If he feels you are in a panic then he should explain things better to help you through the issue. Sometimes they get tied up in their own importance. Sad but true. Hopefully things will settle down and he'll become caring again.

[ingemlb]

Well I am going to give him the benefit of the doubt as I guess doctor's are people too who can have bad days. This was so out of the ordinary as he has been most caring and attentive and thorough in the past. In the four weeks here I think I could count 3 days max where he didn't check up on me, and that includes the weekends, some nights turning up at 10pm. So I have to give him the benefit of the doubt and hope this was just a once off.
He has organised an ultrasound of the foot and shoulder to see if there is any localised infection that could do with a steroid jab so will see how that goes today.
Thanks for listening to my venting . It's a new day here in Australia so I am hopeful all will be ok. Inge.

[ingemlb]

In case anyone reads this in the future, as this thread was supposed to be all about digestive tract issues I thought now 6 months after starting it, would be a good idea to add some final comments.

Yesterday had another gastroscopy. Stomach ulcers are all but gone. One remaining one but it is practically healed. Also have had very few episodes of bowel pain the last few month. So verdict is .. it was all Wegener's caused and my current treatment is dealing with it all

I am still on Pred unfortunately. 20 mg at the moment. Has been a struggle going up and down trying to taper it down. I am also on 20mg of MTX once a week and Bactrim DS 2x a day. They are the main drugs to treat the Wegener's and we are hoping I can get off the pred but my Rheumy is slowing it right now. Will be reducing at 1mg every 2 weeks after one month on 20 mg. That's if the blood test results continue to be "fantastic"

So as far as mucous membrane inflammations: bowels seem better, stomach almost healed, eyes have not been red in months and have not had another mouth ulcer since the previous one healed after coming home from Hospital in late February. Sinus issues are also improving but only slightly. Nose still running and a lot of yellow mucous. But less coughing so less post nasal drip running into my lungs.

[Debbie C]

Inge,glad to hear you are doign so much better