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...:unsure:
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...:hug2:
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...:hug2:
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.

[mishb]

Welcome to the forum Alysia.

I'm so sorry that you feel so alone in your Country.......I wonder how many other people in Israel may have Wegs.

You mentioned that you are on MTX 2.5mg daily. I was pretty sure that this drug was taken in a larger dose once a week and that it shouldn't be taken on a daily basis because you need to have days of no MTX. Maybe someone on here could confirm that.
Are you also taking folic acid for the MTX?

If the colon trouble is Crohns, then MTX is also used for that condition as well.

I hope things come good for you soon

[Dirty Don]

Yes, I was surprised at your mtx dose. Mine is similar, but once a week, halved about 12 hours apart. And folic acid is a necessity with mtx...saves the stomach and the hair! Best of luck.

[pberggren1]

There was someone else on here that is from Israel. Can't remember who it is though.

[drz]

There was someone else on here that is from Israel. Can't remember who it is though.

Did they leave a pin on the map?

[pberggren1]

I think so. I will check.

[pberggren1]

gmyi is also from Israel on here.

[Palmyra]

Hi Alysia,

My daughter was diagnosed with Crohn's disease, then later developed Weg. Not to say you have both, but an individual can have more than one autoimmune condition.

In my years of monitoring these sites, biopsies of the nose are difficult to obtain conclusive diagnostic info, but biopsy of the colon was easy and definitive for my daughter.

Best of luck,
Jane

[Alysia]

Hi,
I dont know how I missed the second page of this thread, so I'm sorry, Michelle, Don & Phil for the delay in answering you...:sad:

I dont know how many weggees there are in Israel. my WG doc has some, but all my other docs never saw WG pateint except for the lungs doc. I wonder if there are statistics how many wegees there are in each country... I also wonder about genetic basis. because my parents are relatives...

Considerng MTX: before it, I tryed Imuran and it was terrible: I vomit so much, about 15 times in 3 hours, I thought I was going to vomit my soul... so when I started MTX my doc decided to give it like that. but now I'm worried. maybe it is a problem to take it this way ? Does anyone here know if it is O.k. ?
I also take folic acid 5 mg a day.
Jane. thanks. you confirm my experience with nose biopsy. sorry for your daughter. what is she taking for Crohn ?

[Palmyra]

Alysia,

The drugs my daughter takes to control Weg (Rituximab or 'Rituxin' infusions, along with the occasional prednisone) has controlled all of her Crohn's symptoms, as it is a very similar disease in that regard. Methotrexate was not enough to control her Weg, and immuran gave her pancreatitis (very bad!!)

That you take additional folic acid is a very good idea. When my daughter's GI tract was not functioning well, she took a prenatal vitamin and a probiotic suppliment daily. Best of luck with your intestinal issues. They can cause a lot of fatigue as well.

Jane

[Alysia]

Hi jane,
Thanks. a lot of health to your daughter. :love:

ABOUT THE MTX : Does anyone here taking it every day, like I do (6/7 week) ? Is it a problem to take it like that ?

[Jaha]

Alysia,

When I was on MTX I took an injection once a week and also took folic acid. My rheumy warned me that it was hard on the stomach so we decided to go with the injections.
Jana

[mishb]

Hi jane,
Thanks. a lot of health to your daughter. :love:

ABOUT THE MTX : Does anyone here taking it every day, like I do (6/7 week) ? Is it a problem to take it like that ?

Alysia,
I take MTX one day a week at a higher dose (20mg)

Google says once a week or alternating days with several days or weeks with no MTX in between.
I was also told that you can take folic acid every day but not on the day of taking MTX

I guess some doctors/Countries, have different ideas

[Alysia]

Hi Michelle,
Thanks. I wonder now if I am getting the right treatment after what I read here. this is plus the fact that the docs here have single cases of WG and therefore are not as experienced as yours, in Australia, USA and Canada. I even started thinking, maybe there is good WG doc over the ocean who gives consultation by Skype.
Phil,do you know such a doc ?

[annekat]

Your docs could try consulting with any of the docs listed as specialists on the Vasculitis Foundation website. This would include docs at the Cleveland Clinic, the one center I see recommended most often on here, though there are of course other good ones, too. I think consulting by Skype would be cool, but if they can't do that, they can do it by email, or maybe phone, etc. I don't know if they have limitations on countries, but I think some of the ones listed are in England, at least.... haven't looked at that page in a long time since I'm not doing anything with the information right now.....

[HopeinTN]

My sister has Chron's and she takes Methotrexate and prednisone. I hope you are doing better!

[debra]

Alysia, merry Christmas... Alysia, you have been an incredible friend, thank you... I love you, you're my sister, my mother, my special friend.... God bless you Alysia, and bring you more and more peace everyday..... All my love..... Deb. XoxoXOXO. Phil, I look forward to the day I get to thank you in person.......