Are there many people who have issues with the digestive tract due to Wegener's? in early 2010 during a routine colonoscopy the bowel surgeon found an inflamed ileum. I had been suffering from bowel obstructions for many years and often was hospitalised on a drip which luckily after a week or so would bring it back to normal. Initially we assumed all the obstructions were due to adhesions but then later after having cleared a few of the nastier adhesions using laprascopic surgery the Surgeon felt the obstructions were more due to infection or general IBS. As I had been working in Asia for 2 years and brought back a very nasty asthma like cough and increased sinusitis he felt maybe I also had some but that was attacking the bowels which we were not used to seeing in Australia and as I went to Asia as an adult I had not built immunity to it.
Anyway the inflamed ileum changed the diagnosis to IBD or Crohn's. However it didn't occur to me to go to a gastroenterologist to have this confirmed or properly investigate. The surgeon told me his instruments could only go to the start (or end) of the Ileum and he biopsied the inflamed tissue.
At the same time he performed a Gastroscopy and found 2 bleeding stomach ulcers. This time he found the Helicobacter Pylori bug and treated it with 2 courses of antibiotic treatment and also put me on Nexium which dries up the acid (later changed to Somac). He then repeated the Gastroscopy 3 months later and the ulcers were gone. A year later I stopped taking the Somac for some strange reason felt I no longer experienced reflux so didn't need it. But I was getting niggling bowel pains. These were different to obstruction pains in that they didn't go into severe contractions just annoying enough around my belly button. So a year later in 2012 I had the Gastroscopy and Colonoscopy repeated. This time there was no obvious acute inflammation of the ileum however the colon went constantly into spasm which made the surgeon suspect there was inflammation higher up which he couldn't see with his instruments. The stomach was a mess. The entire wall covered with tiny what he called "chronic ulcers". No helicobacter was found on biopsy. He also said I was suffering from Barretts Oesophegus. Both the Ulcers and the Barrets needed me to be permanently on the Somac/Nexium and he was surprised i decided to take myself off them. (trouble is I have always been a bit adverse to taking any drugs I didn't feel I needed).
But he didn't suggest any more thorough investigation so I started swallowing the Somac again and lived with the flaring symptoms every since.
My eyes started about the same time the bowel issues changed to IBD but the Ophthalmologist didn't think they presented as Crohn's like symptoms so was more inclined to call it Sjogren's . Again no attempt was made to nail that diagnosis. My immune system in general had been improving on a treatment to fix it. I had had no acute infections for years. The cough had all but gone. No further IBS or Obstructions. As so much was improving I figure the rest would also go in time not expecting an increase in symptoms.
Guess this is a long way getting to my point. I am trying to figure out
Are all the digestive tract issues (stomach ulcer, bowel inflammation - and who knows what else is inflamed between the bowel and the colon) mouth ulcer and eyes likely to be due to the Wegener's? And do others find that treating the Wegener's improves those? Or would it be better after I start to get a bit stronger to try to get all those things diagnosed by the correct specialist so that I know what I am looking at. My current Gastroenterologist says it's all Wegeners. She is of course loathe to do a Colonscopy right now as I am likely too weak to put up with the bowel prep. She hasn't said to return when I feel stronger. She very much doubts the Crohn's diagnosis as the Ileum should have still been obviously inflamed and she doesn't believe the spasms during the last colonoscopy were a definite sign of inflammation present.
As the recent Gastroscopy confirmed the stomach ulcers are still very much present I am a bit nervous given that my husband almost bled to death when an ulcer ended on a small artery and my father had 3/4's of his stomach removed when an ulcer broke through the wall. But seems nobody who looks inside gives me any advise what I can do to get rid of these ulcers
Not sure if they think I am smart enough to go and follow it up or if they think nothing can be done
Would like to hear from others who have these type of issues and how they progressed/retreated with this disease.
Sorry for posting a lot of questions but my head is racing away yet when I try to research I keep falling asleep
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