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**Randy** · 02-04-2013, 10:25 AM

Hy everyone, my name is Randy,I have Wegner's Granulomatosis. I live in New Westminster British Columbia (a suburb of Vancouver). I found this site about a month ago and have been busy reading a bunch of the threads and am sorry I didn't find this site sooner, it would have been so helpful during my recovery.
I thought I would give a brief history of my experience with Wegner's.
I was diagnosed with Wegner's in the spring of 2008, it was an ugly first three years but things are under control now. It attacked my sinuses, hearing, eyes, vocal cords,lungs and joints. Worst of all It attacked my digestive system and I developed severe internal bleeding. 6 Months in the hospital,6 operations and minus 6ft. of small intestine, they managed to get the bleeding under control.
I was given massive doses of prednisone and cyclophosphamide to get the Wegner's under control. This cut the blood circulation to my hips and in 2010 I had a total hip replacement of my left hip. Then in 2011 I had to have a total replacement of my right hip. It has been a long slow recovery because I lost most of my muscle mass in the hospital and had to work at rebuilding the muscle around my hips to hold the joints in place. I saw my hip surgeon last week for a three year check up and he says every thing looks good. I just need to keep working on the muscle strength and range of motion.
The Wegner's has been in remission for a year now. My Rheumatologist says my blood tests are so good that in most cases he would take me off my medication and monitor the Wegner's with blood tests, but in my case they had such a hard time getting it under control in the first place that he does not recommend it. I agree, I would rather put up with the negative side effects of the Azathioprine than go through all this again.
I haven't seen anyone else on the site who has had Wegner's attack their digestive system. I would be interested in hearing form anyone who has had the same problem.

**Debbie C** · 02-04-2013, 12:53 PM

That sounds like you had Crohn's disease.My mother had that and they had to cut out several feet of her intestines. I've been having stomach issues but the doc says its just from the steroids eating away at the lining of my esopagus and stomach lining, I hope that's all it is. Glad to hear u r doing so well and that it stays that way. And welcome to our group !!!

**me2** · 02-04-2013, 01:33 PM

Welcome Randy. Unfortunately it sounds like you have really earned your place on this site. Many here have had severe difficulties I have heard of intestinal involvement but don't know anyone personally.
Back in the days when I was researching this disease heavily online I found a case of wg that presented in a mans prostate and no where else. I thought "Wow, and MINE was hard to figure out with sinus and joint trouble"

I too have intestinal problem, most likely from steroids and the buckets of other drugs I have taken over the past thirty some years.

**Col 23** · 02-04-2013, 02:24 PM

I didn't even know about WG attacking intestines. I also didn't know about long term pred doing damage to that as well.
I did have a bowel infection at one stage if that counts. I suppose it can get you anywhere. Col 23

**Col 23** · 02-04-2013, 02:26 PM

Welcome Randy sounds like you have had a lot to contend with over the past 3 years. Heres to continued Remission.
Col 23

**mishb** · 02-04-2013, 03:30 PM

Hi Randy, welcome and I'm glad you finally found our lovely bunch of people.

What an ordeal you have been through and what an amazing effort to be in remission.

We look forward to you sharing your knowledge and experiences so that many more people can benefit from your help/story.

Take care

**annekat** · 02-04-2013, 03:38 PM

Welcome, Randy. You are not too far from me and some others here, relatively speaking. I know of at least one other in BC.

The first part of what you describe sounded a lot like me and others on here, but when you got to the digestive system and the hip replacement, I though, wow, this guy has been through a lot more than many of us. I'm so glad you are in remission now and hope you are able to stay there. That has eluded quite a few of us on here, while others have done well with it.

I hope to see you on here regularly. This is a really great group of people and we have fun as well as learning and sharing a lot about WG with each other, through good times and bad. I can't imagine a better forum.

**Randy** · 02-06-2013, 12:45 PM

None of my doctors ever mentioned Crohn's but now that you mention it, it does sound very similar.I'll have to research that part of it. I had a lot of stomach issues too, when I was taking a lot of drugs, the doctors more or less told me the same thing, and "once you are off the drugs things will get better". At the time I had a hard time believing it, but it is much better now,so I guess they were right.

**ArlaMo** · 02-06-2013, 03:44 PM

Welcome and glad you found us. Sorry you had such a rough time!!

My husband is a fellow Canadian, born in Tofino.

I've had a few stomach issues, but it has been due to large prednisone doses. I have seen a couple of people on the vasculitis Facebook group that have Wegs and stomach problems, but it has been a few months back that I saw those posts.

Hope you continue to do well and stay in remission!