New member from Toronto, ON

[gutless]

Hi,

I've been lurking this site for a while and thought I had better introduce myself.

I'm a 52 yr old female and I was diagnosed about 4 months ago after having various, really weird symptoms - swollen face, swollen joints, painful sores on my legs that looked like bug bites. After getting a blood clot in my leg, my rheumatologist decided to do the blood test and bingo! Wegener's.

I also have ulcerative colitis, which is a disease of the bowel. In 1993, I had my entire large colon and most of my small intestine removed due to disease. After the surgery from hell (almost 2 years in the hospital and having my last rites read twice), I'm alive and fighting, but getting pretty tired of fighting. I have had an internal pouch since 1995, which acts as a bowel. Unfortunately, I use the bathroom about 20 times per day. I'm on no meds for UC other than the occasional imodium if I eat something that I shouldn't have.

I currently have both kidney and lung involvement and am taking 20mg prednisone, 80ml methotrexate injection, 1000mg myfortic. I was on 2000mg cellcept but was switched to myfortic due to the expense, and then switched to 1000mg due to diarrhea. Going to the bathroom every 20 minutes was no fun.

I have to have a hip replacement due to osteoarthritis - my left hip is considered severe and my right hip is moderate. The orthopedic surgeon won't perform the surgery until my Wegs is in remission unless I can't stand the pain, which, so far, is tolerable with pain meds. Also have gyne surgery awaiting me, but that surgeon won't do it until I'm in remission because I "won't heal". I haven't noticed anyone on this forum mentioning that their surgeons won't do surgery until they are in remission .... anyone else heard this.

I don't have a Weg's specialist - I do feel comfortable with my rheumatologist.

Want to thank everyone on this forum for allowing me to follow your stories, trials and tribulations. It's been a great comfort to know I'm not alone. Best of health to you all.

[elephant]

Hi gutless, I like your name and welcome. Wow you really have been through the mill. How are the medicines working so far?
Many doctors are nervous about doing any kind of surgery unless it's emergency or it will help the WG ( resolve the WG problems). Or they really need to find out in my case is the lung nodule cancer or Wg? How are your kidneys doing? Lungs?
You know how we are about Wegeners Specialist. We just want the best for you. Keep us updated.

[Sangye]

Hj gutless, nice to meet you. I can only imagine how tired you must be of fighting. I'm surprised that they put you on Cellcept since it's famous for causing diarrhea. I really encourage you to get a Wegs specialist. Since you've lurked for awhile you knew I'd say that. I think JanW said there was one in Toronto? It would make all the difference in the world for you.

[Doug]

Oral surgeons were hesitant to operate on me for necrotic bone in my mandible, and an Ear-Nose-Throat doctor was hesitant to perform one surgical procedure on my ear, naming another far less acceptable alternative (to me!) with a better prognosis. At the time, I'd been in remission a couple years (and still am). Gutless, I think you join the ranks of the most severely abused "medical experiments" - we often feel that way - on the forum! Glad you are alive! You can tell us a lot we need to know and understrand, I am certain.

[JanW]

Hi, gutless:

There is a Dr. Carette at Mount Sinai in Toronto who is a WG specialist.

I have a saddle nose caused by my WG, and my surgeon will not operate (and he is a ENT specializing in WG), until I have been in a drug-free remission for six months. Of course this procedure is purely cosmetic, although it is correcting a deformity that I was not born with!

I did have surgery to correct a subglottic stenosis, however, since that has to be done (and the tissue grows back anyway, sort of regardless of whether the WG is active -- no, they don't really know why!), they just do it.

[gutless]

Thanks for the welcome.

My meds were working - it was only kidney involvement and things were looking up. Until last week, when the CT scan said it was in my lungs. So, not near remission yet, but working on it.

Jan, I'm especially not interested in going to Mt Sinai. That's where my surgery from hell took place. I could write a novel about the problems that I had there and the error (yes, error) that my surgeon made. I changed surgeons and now go to Ottawa for any UC stuff.

[Sangye]

Gutless, I can sure understand your reluctance to go back to Mt Sinai. I just want to say that there are individual bad doctors anywhere-- and even bad departments if it extended that far-- but it doesn't mean the entire facility is bad. Almost any rheumy can treat UC, but that's not true with Wegs. Your Wegs involvement is complex, and with the UC complications it would be impossible for a regular rheumy to handle. Please trust us on this. If you don't go to Mt Sinai, please consider finding a Wegs doc at a different facility.

[JanW]

The only other ones in Canada that I know of are in a facility in Hamilton, ONT, and I don't know which one -- I assume a large teaching hospital in that city. I do know that Carrette is the name that keeps coming up in Canada -- you can also check with the Vasculitis Foundation in Canada. They are very active.

And I second everything that Sangye says. The hospital that my ENT practices at doesn't enjoy the greatest reputation as a beautiful, premier facility in NYC, but there's no way that I would have surgery on my windpipe or nose without him, anywhere but there.