Wegener's digestive tract involvement

[ingemlb]

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 :(

[Dirty Don]

First, piece of experiential advice: Slooooow down Inge. Seriously, more stress does not help either your health or your ability to learn more quickly. As for the WG in your colon area...sure, could be - docs should get it...the AI is going to attack an infection, and that doesn't bode well for us with WG and the drugs we take. Usually becomes a flare of sorts; other symptoms may accompany such. Also, be aggressive with your docs, ask for what you do not know even if you're not sure yourself. YOU are their employer at this time...act thus. Keep learning, but don't exhaust yourself, OK?

[ingemlb]

Thanks Don. I am probably coming across very neurotic at the moment :( Going through a roller coaster of emotions. Some I am sure must be from the Prednisolone the other the fear of the unknown. I'll try and calm down. Probably will feel less stressed out once back home again. Thanks for putting up with me and giving your advice. It's much appreciated. Inge.

[windchime]

Hi Inge, The best way to tell if most of this is related is if it clears up with the Wegs meds. The unfortunate part is this will take time. I'm going thru that now. I also have chronic sinusitis and my nose runs constantly. I do not have wegs in my sinuses however. I do the nasal rinses when the running nose irritates me enough. I should be more consistent, but alas I'm not. I also have severe allergies. Have you ever had allergy tests done? This might give you some insight into the sinus issues. I would also suggest something like Zyrtec or Claritin both antihistamines. They may give you some relief.

I understand your need for answers but as Don said take your time. Stress over this disease is not our friend. Also the biggest hurdle is complete you have a definite diagnosis and you are in treatment. I guess that's two hurdles. Keep asking questions as someone will always answer.

[ingemlb]

Hi Cindy. When I had the sinus surgery in October the ENT specialist said it was "allergy driven" sinusitis and there was a lot of diseased tissue he removed as well as polyps and he widened passages to stop the blockages. Then when I returned 2 weeks ago for the biopsies he said in cases where the surgery doesn't fix the problem, and for him this is very rare, maybe one patient a year, the sinusitis is usually due to Wegener's. However the biopsies came back inconclusive but I have a feeling that may have been due to me having already swallowed 6 days of Prednisolone. As the other symptoms quickly went into remission as well. Hence the jury is still out on that one. I also think due to the fact he removed quite a bit of tissue for the biopsy maybe that was adding to the bloody scab.
But i hear your point. I need to be patient and in time may discover what is causing what. It's just that when you have been on an intensive treatment for 7 years and then suddenly discover you have a disease you had never heard of it kind of freaks you out a bit :( Anyway thanks for your patience and your help. I will try and slow down with the questions. Inge
ps. no I have not had any extensive allergy tests done

[windchime]

Please feel free to ask anything you need to. We are just encouraging you to not to panic as that creates stress.

My sinuses run all day then get congested in the evening. It is very annoying. I just did a rinse about an hour ago and it partially unblocked one side. I also use an antihistamine and steroid nasal spray that doesn't help most of the time either. *sigh* I'm annoyed that the pred hasn't dried the darn things up yet. I did expect that to happen. So confused about that. :confused1:

I'm not sure if 6 days of pred would have resulted in an inconclusive biopsy. It is my understanding that a using a nasal biopsy is the hardest to prove wegs and many come back inconclusive. Just to help you a little with terms. You aren't in remission yet. Your symptoms are reduced or absent because of the antiinflammatory effects of pred which reduces inflammation. You won't be fully up to speed with the MTX for about 4-6 weeks after starting it. Remission can be drug induced or natural. Drug induced is no symptoms as long as you are on low doses of meds to keep it like that. Natural remission is when you are off all meds and remain symptom free. Which you will be remains to be seen and unpredictable. I hope you are the later. Hope this helps.

[ingemlb]

Thanks, that helps a lot :) My Rheumatologist said as long as the biopsy was done within 2 weeks of starting the Pred it would be ok. Anyway what you say makes sense. I think the only thing I can do is wait and see how things progress. I guess its a bit frightening when you are presented with a new diagnosis which from all accounts can be quite a nasty disease. Also the pain I had on admission which had built up over a few weeks I don't really want to experience again. Then all of this happened whilst i am in hospital where test and medication adjustments are instant. Doctor was here tonight and I asked him what happens after I go home he said he will make an appointment for 1 months' time. I was under the impression he would see me more frequently until we are sure I can cope with the treatment. Anyway if the worst comes to the worst and I can't control the pain I will just come back to ER. AT least this time I will arrive with a diagnosis and they can do the blood tests and see what's going on.
He is going to do an ultra sound of my ankle and shoulder tomorrow to see if there is still some inflammation causing the pain and if he finds any he said it may help to inject the drug into the area. He can't quite understand the pain as the inflammation markers are still ok and the areas that are in pain are not swollen this time. Anyway if it disappears I will know it's due to the extra 5mg of Prednisolone I started on today. So going forward it will be 25mg of pred for now. Sadly he is very glued to the label "limited" and can't quite understand why I am making such a fuss :( Mustn't realise what its like being presented with his out of the blue and knowing very little as to how thins will progress.
All the best. IngeD

[windchime]

Next time you talk to your Rheumy ask what you are to do if you have problems between visits. Most of us can call or email our docs and get a quick response. 1 month is a normal interval for visits in the beginning. You're just used to seeing them every day since you're in the hospital. Once you get out you'll have plenty of doc visits to deal with. Your ankle and shoulder could be a little bit of bursitis which is an inflammation of the bursa (sack filled with fluid) surrounding the shoulder joint. In which case the injection will fix it in no time.

As you found out docs don't like being told what to do or even like suggestions. Don't let that put you off. You did very well making the suggestion about the pred. I mentioned this forum to one of my docs and got dire warnings about listening to anything said on here. Sometimes I just try to make my docs think it was their idea. Not all docs are as accommodating as they should be. It sounds like you have good docs. Good luck with the ultra sound tomorrow.

[Alysia]

Hi Inge, I already writing to you about this issue on your "new member" thread. I am relating to this also here again, in case that there will come someone new to look for info about it.
so, yes. there can be colon involvement in wg. I have it. :sad:

[ingemlb]

Hi Cindy. On retrospect I think I caught him on a bad day yesterday. I asked him exactly that and was told he was a busy man and I need to leaveva message but to expect replies to take a few days. He probably thinks he is dealing with a panic merchant as he only met me since being here with this nasty inflammation and stressed out by an illness that he thinks he will have quickly under control. He is possibly afraid he will here from me day and night and spelled out very clearly he is totally unavailable after hours. He also went into shock when I mentioned online support group saying I had absolutely no need of this. Almost to the point of telling me to leave the group if I want to retain him as my doctor. Like I said I must have caught him at a bad time. Before that visit he had been nothing but caring. I was shocked and trying to figure out if the message was find yourself another doctor. Anyway think I may still go ahead with him and if things don't work out try the other specialist who has been seeing me. :( inge

[Dirty Don]

Bad day or not, he's still supposed to be a professional...listening is part of this game...jeez. If he continues his attitude, I'd think about a new one...but that's just moi.

[windchime]

Sorry he is such a jerk to you, but Don is right he should be professional. I didn't have a good reaction to mentioning the group either so now I just let them think I found things out by doing my own research. Some won't like that either. It's sad that your Doc isn't available to you in the event of a flare. If you have a good relationship with your primary maybe you can begin there. The hospital gastro doc sounds promising, does he or she have a private practice? Although some docs may be brilliant they still need to listen to their patients and respond accordingly. If he feels you are in a panic then he should explain things better to help you through the issue. Sometimes they get tied up in their own importance. Sad but true. Hopefully things will settle down and he'll become caring again. :hug3:

[ingemlb]

Well I am going to give him the benefit of the doubt as I guess doctor's are people too who can have bad days. This was so out of the ordinary as he has been most caring and attentive and thorough in the past. In the four weeks here I think I could count 3 days max where he didn't check up on me, and that includes the weekends, some nights turning up at 10pm. So I have to give him the benefit of the doubt and hope this was just a once off.
He has organised an ultrasound of the foot and shoulder to see if there is any localised infection that could do with a steroid jab so will see how that goes today.
Thanks for listening to my venting :). It's a new day here in Australia so I am hopeful all will be ok. Inge.

[ingemlb]

In case anyone reads this in the future, as this thread was supposed to be all about digestive tract issues I thought now 6 months after starting it, would be a good idea to add some final comments.

Yesterday had another gastroscopy. Stomach ulcers are all but gone. One remaining one but it is practically healed. Also have had very few episodes of bowel pain the last few month. So verdict is .. it was all Wegener's caused and my current treatment is dealing with it all :)

I am still on Pred unfortunately. 20 mg at the moment. Has been a struggle going up and down trying to taper it down. I am also on 20mg of MTX once a week and Bactrim DS 2x a day. They are the main drugs to treat the Wegener's and we are hoping I can get off the pred but my Rheumy is slowing it right now. Will be reducing at 1mg every 2 weeks after one month on 20 mg. That's if the blood test results continue to be "fantastic" :)

So as far as mucous membrane inflammations: bowels seem better, stomach almost healed, eyes have not been red in months and have not had another mouth ulcer since the previous one healed after coming home from Hospital in late February. Sinus issues are also improving but only slightly. Nose still running and a lot of yellow mucous. But less coughing so less post nasal drip running into my lungs.

[Debbie C]

Inge,glad to hear you are doign so much better :thumbsup: