colon involvement ?

[Alysia]

hello,
I'm new here, but not with WG….
English is not my language, I read well but write terrible, sorry for all the mistakes...
I am 45 years old and I live in small city in the periphery of small country. I never met anyone with WG… A kind of loneliness… and here you are, so experienced and generous…
I have WG since 2008, and maybe before. Starting with acute pneumonia, 5 kinds of antibiotics with no effect, ESR 100, lungs all white in XRay, and then pred save my life. 60 mg. first diagnosis was BOOP.
Afterwards my nose start bleeding, then ears problems, bronchi, cough, joint red and aching and colon involvement.
Now I am on pred 5 mg a day and MTX 2.5 a day. 6 days a week.
I have good rheumatologist and he says my illness is active but on low level. Thank God there isn’t kidney involvement (yet??)
I want to ask if someone here got it in colon ? and if so, what med help with that ?
I have diarrhea which become worse if I eat a lot of things, I cant eat a lot of foods, including fruit and vegetables.
I want to ask so many questions, but one by one…
Thank you for being here
Alysia

[annekat]

Welcome, Alysia. I'm glad you discovered this wonderful forum. It has been a lifesaver for some of us, and I don't know what we would do without it.

Sounds like you have had WG about as long as I have, though I wasn't dx'd until 2011 since they thought it was severe allergies and recurring sinus infections. The double, antibiotic-resistant ear infection I had in 2008 should have been a clue and was the start of all my problems. Eventually it went into my lungs and that's when things got bad enough that a diagnosis came about. So, as is typical, there are some similarities and some differences between our two experiences.

As for colon involvement, I haven't heard of that but have heard that WG can strike just about anywhere in the body besides the typical places. I imagine there is someone on here that is familiar with that and I hope they will see this!

Best of luck in continuing to cope with WG, and I hope you will keep posting about anything and everything related to WG, and other items of interest in your life, as well!

[Pete]

Hi Alysia,

Welcome to our forum. The more, the merrier!

I was wondering if you have been tested for Chrohn's disease. It's another AI disease that affects the colon.

good luck!

[pberggren1]

What country are you from?

[Dirty Don]

Welcome Alysia, glad you found us! Your colon issue sounds much more like diverticulosis..or one of those diver...things! I'm sure WG can affect the colon, but what you're going thru really sounds different...though inflammations can occur anywhere in your body because of WG...keep asking those questions!! Best of luck!

[renidrag]

I too would ask about a Crohn's diagnosis. Just because we have WG doesn't mean we can't have something else also. That's as close to a quote from Jack that I remember.
Dale

[Jaha]

Alysia,


Glad you found us,we are a special group of all kinds of wegs. I don't know what I would have done without all the advice and info I receive from this site. It has truely been a life safer at times. Welcome aboard!
Jana

[Debbie C]

Hi Alysia,don't be afraid to ask anything on here. I've found that out. There are alot of knowledgable and supportive people here. As for your question,have you ever had a colonoscopy done ? I don't know why they can't do I biopsy and see for sure what the problem is.

[Alysia]

Thank you all for this warm welcome... it is therpeutic in itself...
Phil, I live in Israel. If there is anyone here from Israel I will be glad if he send me private massage.
I didnt do colonscopy because I am too weak to do it. I saw 3 gastro docs. 2 of them didnt know what WG is. the third. old and experinced said it can be WG although it is rare. I dont 'believe' in biopsy very much: I did 2 biopsies from the nose, which was in terrible condition and the results were with no evidence to WG. How were yours biopsies ?
Alysia

[annekat]

Thank you all for this warm welcome... it is therpeutic in itself...
Phil, I live in Israel. If there is anyone here from Israel I will be glad if he send me private massage.
I didnt do colonscopy because I am too weak to do it. I saw 3 gastro docs. 2 of them didnt know what WG is. the third. old and experinced said it can be WG although it is rare. I dont 'believe' in biopsy very much: I did 2 biopsies from the nose, which was in terrible condition and the results were with no evidence to WG. How were yours biopsies ?
Alysia

My biopsy was from the bony part of my septum, in my nose. My nasal bridge had already collapsed ("saddle nose") because there was a hole in the bony part where the cartilage had been attached. I had lung involvement, too, but the nasal biopsy is much easier. I don't know anything about biopsy of the colon, just that it doesn't sound pleasant. Someone here is sure to know more.