Now I'm getting angry

[Jaha]

PJ,
I'm so glad that you went to the ER and got yourself taken care of. They will figure a better treatment out for you and you will hopefully feel better soon. Take care!

[annekat]

I, too, am glad to hear you got taken care of, feel a lot better, and had a lovely dinner! I hope your doc can find something that works without making you sick, and you can proceed with your treatment.

[Alysia]

Hi PJ. I am glad they gave you such a good treatment at the ER. Like me, we cant bear Imuran. Mtx didnt work for me. So I am on rtx. It works with almost zero side effects. Ask for it.

[sangell]

Something occurred to me as I perused this thread and read PJ's comparison of his diarrhea to a colonoscopy exam prep. On my last visit to my primary care physician prior to being diagnosed with W/GPA and renal failure I was discussing my concern that 'something was wrong' in my 'guts' and my doc recommended I have another colonoscopy since my last one had been two years before and as my father had developed colon cancer at age 81 and pre cancerous polyps had been found during my last exam. I called my gastro enterologist to make the appointment but a rather significant problem developed before I could see him. Kidney failure! Now I wonder since my fluid intake is restricted, is it possible for people like me to even have a 'colonoscopy? As I recall you have to drink a gallon of that godawful solution to clean out your bowels which is 4 times my daily fluid limit. I'll ask my nephrologist when I see one next, if I remember, but until then, has this come up before?

[vdub]

I had a colonoscopy last year and the prep process had changed from what I had to do 10 years ago. I believe I only had to drink 4, 16 oz glasses of fluid, but I can't quite recall. I do remember that it wasn't much of a problem. With respect to your kidneys, I don't think it would be an issue since the fluid is quickly flushed out of your system by a "more direct path". It would certainly be an interesting topic to talk over with your doctor.

[debra]

Sangell, no a regular prep would be a disaster with kidney involvement, let alone extensive kidney involvement. Ifyou look even on the back of say mirelax, it warns right there on the back may cause kidney damage! Why in tiny print? This should not be used in compromised kidneys, and most would agree, no laxative should! There is a prep, done with magnesium, as magnesium is safe, but im not sure of the name? Go lightly? Not sure if thats the magnesium one... Please research this for you're self... Someone very close to me, had perfect kidneys, until they did a colonoscopy using mirelax.... Debra...

[Alysia]

Something occurred to me as I perused this thread and read PJ's comparison of his diarrhea to a colonoscopy exam prep. On my last visit to my primary care physician prior to being diagnosed with W/GPA and renal failure I was discussing my concern that 'something was wrong' in my 'guts' and my doc recommended I have another colonoscopy since my last one had been two years before and as my father had developed colon cancer at age 81 and pre cancerous polyps had been found during my last exam. I called my gastro enterologist to make the appointment but a rather significant problem developed before I could see him. Kidney failure! Now I wonder since my fluid intake is restricted, is it possible for people like me to even have a 'colonoscopy? As I recall you have to drink a gallon of that godawful solution to clean out your bowels which is 4 times my daily fluid limit. I'll ask my nephrologist when I see one next, if I remember, but until then, has this come up before?

Hi. Please read the first post on this thread: http://www.wegeners-granulomatosis.c...ncy-rooms.html
No peroxide for us.
I have colon involvement but since my colon is so fragile and having crazy diarhea almost every day, my gastro dr. Told me (what I also felt was true) not to go to colonscopy at all. That I might not be able to stand it.
I wonder if there can be other options (not colonscopy) to make sure you do not develope cancer in your colon ? Anyway, first priority now are the kidneys.

[debra]

In Canada they are recommending a test called, gFobt. It's a fecal occult blood test to detect colon cancer... Great to walk away from a test knowing you're kidneys will be, just as they were when, you walked in!!! Debra...
https://labtestsonline.org/understanding/analytes/fecal-occult-blood/tab/sample/

[PJ2010]

Hello all.
Got an appointment to see my specialist in 2 days. The one that put me on imuran. I don't think he knows I did the stint in emergency a few weeks ago and was taken off the medication.
In the last few weeks off the imuran, I've noticed a gradual increase of symptoms. The most noticed is an immense build up of what I feel is pressure throughout my body. It's like when you take a deep breath and hold it for as long as you can. With it the sore eyes and general pain throughout my body.
All that did disappear on imuran, I just couldn't do the vommiting and diarrhoea.
I'm dreading the next experiment.
I'm so over wg.
These doctors do not realise or maybe care what the drugs do to us.
Ive totally stopped drinking. Used to have a drink before dinner each night. I started to blame alcohol for the way I feel. Unfortunately I still feel as bad. The only change is I don't get as tired as I used to.
Oh well, looks like wg is the culprit. On with a new drug aye?

[Alysia]

Hello all.
Got an appointment to see my specialist in 2 days. The one that put me on imuran. I don't think he knows I did the stint in emergency a few weeks ago and was taken off the medication.
In the last few weeks off the imuran, I've noticed a gradual increase of symptoms. The most noticed is an immense build up of what I feel is pressure throughout my body. It's like when you take a deep breath and hold it for as long as you can. With it the sore eyes and general pain throughout my body.
All that did disappear on imuran, I just couldn't do the vommiting and diarrhoea.
I'm dreading the next experiment.
I'm so over wg.
These doctors do not realise or maybe care what the drugs do to us.
Ive totally stopped drinking. Used to have a drink before dinner each night. I started to blame alcohol for the way I feel. Unfortunately I still feel as bad. The only change is I don't get as tired as I used to.
Oh well, looks like wg is the culprit. On with a new drug aye?

the symptoms are back because wg is not being treated. ask for rtx - rituximab. its the only one that works for me. I had similar reactions to Imuran, like you did and mtx didnt work for me. ctx was not in order because my dr. assumed that if I vommit like hell on Imuran, it will be worse on ctx.