Gastro. Issues - Others?

[Rose]

Below is my experience with GI Issues. It does show that WG actively attacking the GI system may not show up in regular blood work.. it certainly did not with me.


I consulted a Professor of Gastrenterology for 17 years for my many gastrointestinal problems which at times left me bed bound curled in the foetal position in pain and discomfort and feeling so terribly ill for weeks on end..... iin the worst case scenario.

When I was finally diagnosed (when the WG had attacked my other organs 17 years down the line) I asked him if all my problems over the years could be due to Wegeners in the bowel and was told by him that it does not attack the GI system

On diagnosis of WG in March 2008 I started treatment with the cyclophosphamide and IV Cortisone. After 6 months I went into remission with great improvement in lungs, sinuse and kidney function. Also what improved, infact just about disappeared completely, were the terrible gastro symptoms which I had suffered from for the past 17 years.

In 2010 whilst in remission and on maintenance meds I had to have a colonoscopy for a rectal bleed which turned out to have been caused by diverticulitis. Before the investigation I mentioned to a new Gastro Doc how all my GI symptoms which I had suffered with for so many years had all but disappeared since diagnosis and treatment of WG. I told him I thought that WG had been the cause of all my bowel problems as this was just too much of a coincidence

I had about 3 colonoscopies during that 17 year period looking for a cause for my symptoms but nothing was ever found. The doctor this time told he would do another test which would never have been done in those earlier colonoscopies as they would not have been looking for Wegeners then. I believe he went quite deep into the GI tissues to obtain a biopsy, of more the medium sized blood vessels. This biopsy showed active but low grade vasculitis ...even although I was in remission. The Pathologist’s report stated that investigations for vasculitis, particularly WG should be carried out. He was not aware that I already had been diagnosed

At this point I would like to mention that during those 17 years undiagnosed that all blood work including inflammatory markers were within normal range

in late 2014 (7 years after diagnosis and seemingly in medicated remission) I started experiencing all the old and severe symptoms of G I nvolvement. Now under my WG specialist, blood work again did not show any sign of WG activity.
I was feeling so ill and telling him I was sure it was WG flaring in my bowel. He was very reluctant to do antything at first but eventually, against his better judgement, he ordered 3 days of 500 mgs of I V cortisone. Within hours of the first infusion!, all my terrible symptoms evaporated. Blood had been taken a few weeks before to test for ANCA and just as I was finished with my 3rd IV cortisone, the results arrived showing very high positive pANCA.

WG was active in my bowel for 17 years undiagnosed. All blood work was negative as was every investigation....colonoscopy! Gastroscopy etc. And how I suffered!! WG then attacking my sinuses, lungs , kidneys etc 17 years later was in a way a good thing for me. With diagnosis and treatment, all the terrible GI issues suffered for so many years greatly improved overnight

I expect at sometime I will have another flare in my GI tract. I also expect blood work will then again show no sign of a flare . But my Rheumatologist has now travelled this road with me and I know next time he will act much sooner and will hit it hard with high dose Pred

I hope my story in some way helps

Rose