Hello, I am a new member who has had WG for 13 years

[Sangye]

Hi Hayley, welcome to the group! I'm sorry you've had Wegs since you were a little kid, but at least it's finally well-controlled. It's great that the diet changes are helping you so much. Is it hard being in Wisconsin and not eating dairy?

[pberggren1]

You always manage to throw a joke in Sangye!

[Sangye]

Well, they are the Cheeseheads. I can only imagine how many heads turn if you say "Do you have anything without dairy?" in a Wisconsin restaurant. LOL

[JanW]

Hi, Hayley and welcome to the forum!

I have subglottic stenosis also (minimal tracheal involvement) right below my true vocal chords. I had my first balloon dilation in addition to surgery where my surgeon made radial incisions into the scar tissue (snapped it wide open like a rubber band). Hopefully this should give me longer lasting relief -- he performs typically four surgeries on people and then they are done for a lifetime. I had mine in March and he said that he is typically booking the next surgery for patients by now but I'm doing fine, still fully open, so nothing on the calendar yet. I have myomicin, steroids and antibiotics as well with the surgery, and am on 15 mg of mtx plus folic acid as my only WG meds. I also have a saddle nose which I can hopefully have repaired if I get off of mtx. If you ever want a second ENT opinion, my guy is the top guy -- vasculitis foundation expert etc. He's one of only 3 in the country, I think that does the surgery in this way.

There are certainly others on this site -- Gwen comes to mind -- that have yearly or more frequent dilations, though.

[Hammy8241]

Hi Hayley,

Whilst its sad for this forum to have any members at all, I have found in my short time with these guys, that there is a wealth of knowledge, friendship, humour and even the odd wise comment for us WGs to draw upon. They even suffer the odd fool such as myself on here too!!

Welcome to the madhouse.
(non conditional – Certificates need not be shown!

[Hayley]

Thank you for the info. I really enjoy my ENT but he's getting close to retirement in the next couple years so it's good to have someone else in mind. I have saddle nose as well, it has gotten increasingly worse over the past year or so. I can't wait for the future to have it fixed.

[Hayley]

Ha Ha! yes we are cheeseheads in Wisconsin, and it is very difficult to not have dairy in a restaurant up here lol. When I was first diagnosed with WG my parents took me to a nutritionist so I eat very healthy and most restaurants I go to have other options.

[JanW]

I have found it really interesting that almost all (I think except Gwen) that I have met on the board that have SS or TS also have the nose. It's one thing that really rings true to what you read about with WG -- these two manifestations really seem to go together for reasons that people don't completely understand.

[elephant]

Welcome Hayley, so glad you are doing well. Keep up the good work. I gave up dairy and meat and thinking about doing the gluten free diet.

[Hayley]

I agree and having saddle nose drives me crazy!!! I used to have a lot of nasal pain as well but since I have been doing sinus rinses twice a day and using ponaris nasal emolliant I dont' have that problem any more. If you have never used either of these products you should def. give them a try.