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Thread: New member from Australia

  1. #11
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    Hi Inge,
    welcome to our weggie family.
    I am sorry for your long road of suffering, it is time to start feeling better !
    I have WG with colon involvement. it is rare. I went to couple of gastro-docs, untill I found one, old and experienced, that told me that it is wg in my colon. I also did calprotectin test which turned out positive. it helps for diferential diagnosis between IBS and IBD. my IBD is wg-induced according to my doc.
    the gastro doc said that it is similar to crohn, if looking through colonscopy. I didn't do one, feeling too weak to stand it, and my doc said that it is not necessary.
    my treatment : pred, mtx, rtx, helps my colon symptoms as well. when I flared, the colon is also in bad shape. it means lots of diarhea and strong pains in my stomach.
    still, I am keeping very strict diet, eating almost nothing, otherwise I am in trouble.
    what treatment are you going to get ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  2. #12
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    Thanks Don. Finally got to see the Doc (weekend a bit harder). The main doctor I am admitted under is my gastroenterologist. I told her about the pain and that people in this forum are saying potential flare or too rapid withdrawal of the Prednisolone. She rang the Rheumatolgist and they agreed to bump up the Prednisolone to 25 mg from 20. So I just swallowed the extra 5 mg. Hopefully it will quickly show if it was the Prednisolone. Inge

  3. #13
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    Thanks Alysia. I didn't notice your post until now. Its interesting to hear from someone with WG induced IBD because my Gastroenterologist (who I have only been seeing since being admitted to this hospital 4 weeks ago) was convinced it wasn't Crohn's right from the start and after the diagnosis told me she is certain it is all related to Wegener's. My main symptoms re the colon in the last re months have been the most aggressive diarrhea (I was hospitalised with dehydration after 1 day of diarrhea and spent the entire week averaging 20 visits a day to the toilet) sometime before it starts I get some mild gut pain some bloating and wind but nothing like the severe pain I used to get with bowel obstructions and partial obstructions. And the Gastroenterologist doesn't think I would be able to cope with bowel prep right now and she is right because I have had about enough diarrhea. I fixed the diarrhea eventually by sticking to a BRAT diet which meant for me I ate only bananas, apple sauce , burnt toast and mashed potatoes (no additives) they also allow white rice. Then later i added a bit of steamed chicken (skinless breast) and eventually ate a lot of chicken noodle soup. I learnt that the bananas and apple sauce and mashed potatoes work a bit like yoghurt and restore the good flora in your gut. Anyway it was the only thing that stopped the diarrhea in it's track. Still eating daily bananas and apple sauce as I am scared of a relapse
    The treatment they have me on is prednisolone (just increased again from 20 to 25 mg) and since Wednesday 10 mg of Methotraxate once a week. They want to go up to 20 mg and then drop the Prednisolone if I can manage without. At the moment i don't have any bowel flare up.
    Do you also have stomach ulcers? for the time being I will assume they too are Wegener's and maybe down the track have another gastroscopy to see if the Wegener's treatment fixed those.
    Thanks for sharing your info. Keep me posted how you progress. As I have had bowel issues for so many years and as the ulcers are a real worry I would be interested to hear how your treatment is improving the situation. Thanks again. Inge.

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    Welcome, Inge. It all sounds like such a nightmare and so familiar at the same time. It is true that Wegs can sort of "smolder", even for years, and then lash out, at which point we may be diagnosed. That happened to me and many others on here. Funny, my ENT also called me a "mucus factory", long before anyone had an inkling of my Wegs, because of all the sinus issues I was having. It does sound odd that they are calling it "lite", yet you are still in the hospital after 4 weeks. It sounds to me like you could be getting hit a little harder with both the MTX and the pred. But Michelle says you are in good hands and I believe her.

    In any case, if you have to have Wegs, I'm glad you are here. This is a great community of great people for all the support, information and friendship you could possibly hope for. I don't know what I would have done without it these last 3 years; I would certainly be pretty much in the dark. By reading our experiences on here, you will get an idea of what to expect, and it is likely something a lot more positive than you might have thought. Take a cue from Don, who pretty much feels like his "old self" after a couple of years. And many of us are doing pretty well at carrying on with our lives once we have received effective treatment.
    Anne, dx'ed April 2011

  5. #15
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    Thanks Anne for your encouraging message. Yes I am getting the idea I need to stop worrying so much lol. It's all a bit scary. And to boot I am scared of how I will manage from home. Like here, doctors see you every day. They may not be the primary specialist but they all react and get things done. Like the Gastroenterologist when I mentioned this forum and advise that maybe I am on too low a dose of Prednisolone hence the pain returning got straight onto the Rheumatologist by phone (it's Sunday) and within 5 minutes i was swallowing an extra 5mg of Prednisolone. How will that all work when I am at home and symptoms are flaring? Guess I need to have that discussion with my Rheumatologist who will be the main specialist treating me. Glad I am here too. Certainly makes it easier to learn from others in the same boat Thanks again Anne.

  6. #16
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    Quote Originally Posted by ingemlb View Post
    Thanks Alysia. I didn't notice your post until now. Its interesting to hear from someone with WG induced IBD because my Gastroenterologist (who I have only been seeing since being admitted to this hospital 4 weeks ago) was convinced it wasn't Crohn's right from the start and after the diagnosis told me she is certain it is all related to Wegener's. My main symptoms re the colon in the last re months have been the most aggressive diarrhea (I was hospitalised with dehydration after 1 day of diarrhea and spent the entire week averaging 20 visits a day to the toilet) sometime before it starts I get some mild gut pain some bloating and wind but nothing like the severe pain I used to get with bowel obstructions and partial obstructions. And the Gastroenterologist doesn't think I would be able to cope with bowel prep right now and she is right because I have had about enough diarrhea. I fixed the diarrhea eventually by sticking to a BRAT diet which meant for me I ate only bananas, apple sauce , burnt toast and mashed potatoes (no additives) they also allow white rice. Then later i added a bit of steamed chicken (skinless breast) and eventually ate a lot of chicken noodle soup. I learnt that the bananas and apple sauce and mashed potatoes work a bit like yoghurt and restore the good flora in your gut. Anyway it was the only thing that stopped the diarrhea in it's track. Still eating daily bananas and apple sauce as I am scared of a relapse
    The treatment they have me on is prednisolone (just increased again from 20 to 25 mg) and since Wednesday 10 mg of Methotraxate once a week. They want to go up to 20 mg and then drop the Prednisolone if I can manage without. At the moment i don't have any bowel flare up.
    Do you also have stomach ulcers? for the time being I will assume they too are Wegener's and maybe down the track have another gastroscopy to see if the Wegener's treatment fixed those.
    Thanks for sharing your info. Keep me posted how you progress. As I have had bowel issues for so many years and as the ulcers are a real worry I would be interested to hear how your treatment is improving the situation. Thanks again. Inge.
    thanks for the info, Inge. you sounds more experienced then me.
    I don't have stomach ulcers. I am having dolon problems for years but my wg was also smoldering for years.
    I also tend to get aggresive diarhea. pred in high dozes helps me. in fact only since I started to get RTX, it becames better (which means, again, that it is wg-related). If I am not on antibiotics (which are colon killers ) and eating only according to my strict diet, then I don't have diahrea or pains.
    but this diet means: eating only home made food (clean enough), not spicy, no oil, no meat, no "industrial food" . only a bit of low fat cheese or goat's cheese, chicken, fish, rice, potatos, sweet potatos, apples and bread. I can't bear banana and if I am tempted to eat something which I am not allowed to, then the price is too heavy, so I learned to be careful. at least it makes me thin
    Last edited by Alysia; 02-17-2014 at 04:33 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #17
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    Hi Alysia. Your diet sounds like the one I turn to when my bowels are playing up. I was on antibiotics a few times, the last four doses due to a UTI I picked up in November during a very nasty drawn-out diarrhoea attack. They think it is gone now but I will get retested once I've been 4 weeks off the antibiotics.
    My bowel specialist who thought I had Crohn's after noticing the Ileum inflamed told me in December that the main thing is to rest, not eat out and avoid travel like the plague as although the symptoms settle down it takes the bowels about 3 months to recover from these attacks and during that time they are very prone to flare up again. Especially not sticking to normal food and travel also is what he believes pushed me over the edge as we had to do a lot of it last year.
    The Gastroenterologist here at the hospital doesn't believe the Crohn's diagnosis she is more inclined to blame it all on Wegener's. But she told me even if she did diagnose Crohn's the treatment would be the same so may as well relax and see how the world looks after a few months on the Wegener's treatment.
    Hope yours heals in time too Inge.

  8. #18
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    Hi Inge, thanks.
    I have few friends on fb which also have colon involvement of wg. also Rose here.
    intersting, I also suffer from uti. last year it happened about 4 times and took about 4 antibiotics untill its gone. at least i hope that it has gone.
    I wonder, why your doc suggested you not to travel ? how is it related to the colon ? is it because of eating food outside the house ? or not resting enough ?
    take care and please continue to write.
    I hope you will soon feel better.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #19
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    Hi Alysia. Re the UTI they are usually caused by bacteria from rhe bowels finding their way into the urinary tract. We worked out in my case it was the severity if the diarrhea which became forceful and hard to control how the bacteria managed to spread. Which is where hygiene is more than Critical. I find that with diarrhea often hemorrhoids also star to play up a d make proper cleaning very painful and difficult. Hence I always have flushable wet toilet wipes handy as they are far more gentle especially when you have to run constantly.
    Thought I would share in case oyhers could benefit from the info. All the best. Inge

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