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Thread: Bowel obstructions or Perforations

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    Default Bowel obstructions or Perforations

    Has anyone ever experienced any problems with obstruction or perforations? Or if anyone you know that has?

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    Hi, Dodi. I don't know if you are the same Dodi I messaged with on Facebook yesterday... Not many on here that I remember have had bowel or colon issues, but you can do a search and you might come up with something in the archives. I do know that one of our members, Alysia has colon issues, but she is pre-occupied, as we all are, having just lost our friend Phil Berggren yesterday. The reason you are seeing some Batman avatars is that Batman was Phil's alter ego, and we are celebrating his memory that way.

    Either here or in New Member Introductions, we would be glad to hear as much or as little as you want to say about yourself and what brings you here, and to give feedback on any aspects of WG and its treatment and any concerns you may have. Of course, you can post or start new threads on any of the topics at any time. This is a very open and caring group, and many of us have been through a lot with this disease, either as patients or caregivers. I hope someone will respond soon and that we will continue to hear from you.
    Last edited by annekat; 10-04-2014 at 01:52 PM.
    Anne, dx'ed April 2011

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    thanks so much for letting me know about the forum..I have been sitting here all day not knowing where to start about her and the journey she had..I try to start a post but then i have to stop because its all too much

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    Quote Originally Posted by dodi.houghton View Post
    thanks so much for letting me know about the forum..I have been sitting here all day not knowing where to start about her and the journey she had..I try to start a post but then i have to stop because its all too much
    I am glad you are here! I understand that it is overwhelming to tell it all, so don't feel you have to do it all at once. People will understand. I do know that writing our stories can be therapeutic, but you have to be ready to do it. And don't worry if it ends up being long! I hope this forum ends up being as valuable to you as it has been to me over the last 3.5 years.
    Anne, dx'ed April 2011

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    there are just so many things to tell and so many things I want to ask but I am not sure how to start. Would it be ok to msg you privately

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    WG attacked my GI system but never ( so far) caused obstruction or perforation....just made me feel so ill with 'gut ache' and fatigue. I went undiagnosed for 17 years and it was only when it dissipated and attacked my lungs, kidneys etc that I got a diagnosis and the 'side effect' of the treatment was that my GI issues improved dramatically. A colonoscopy post diagnosis confirmed WG in my bowel. I had a few colonoscopies before diagnosis but was told it was 'missed' as they were not looking for WG. Maybe if I had bled or something it would have been picked up sooner but the inflammation in the blood vessels in my gut was just enough to make me feel so terrible. It all makes sense now....my GI blood vessels were inflamed giving me a similar gut ache that you would get with gastro bug but because the cause of the inflammation was not infection but autoimmune I never got the relief that comes with the diarrhoea.
    these days I rarely experience that terrible pain and the fatigue that comes with it though sometimes it does let me know it is still around. I guess just the same as when ones joints and muscles start to ache when you are having a bit of a flare.
    Today I suffer from a severe case of diverticulosis and have had quite a few bouts of diverticulitis. I also have IBS and reflux disease. I know that WG has been the underlying cause of these diseases.

    Rose
    Last edited by Rose; 10-05-2014 at 04:49 AM.

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    Quote Originally Posted by dodi.houghton View Post
    thanks so much for letting me know about the forum..I have been sitting here all day not knowing where to start about her and the journey she had..I try to start a post but then i have to stop because its all too much
    Would also like to say that i know exactly where you are coming from with that statement. My 17 years undiagnosed were years of absolute hell especially the first 3 where I was almost totally bed ridden, curled up in the foetal position to ease the pain and could only walk a few meters to the loo as I was so fatigued. I was treated like a hypochondriac but I guess i can understand that when every test returned negative. At that point I had a one year old and a four year old. I lost a lot of weight initially but then antidepressants which i was put up saw me gain about 50 lbs. After the first 3 years I improved somewhat, could do light housework and pick up my kids from the local school. During that time I had quite a few bad relapses where I got again so ill, was admitted again into hospital for test only for them to find yet again nothing wrong. One day 17 years after my first GI symptom, my nose started to run. This is when I started to experience the classic symptoms of WG. So a WG diagnosis 6 months later(when it attacked my kidneys, lungs etc) was for me a relief......I wasn't mad after all. The doctors said that this was what I had been suffering from all those years and a colonoscopy a year or so into the diagnosis confirmed WG in the bowel. By then I knew that it was WG that had attacked my bowel because my symptoms had improved dramatically since commencing treatment

    There were other things going on during those times like sinus issues, intermittent microscopic blood in urine but these symptoms came and went. I did not relate them to my bowel problems and neither did the doctors. The bowel problems at that point were so overwhelming and at times I was l suffering for months on end. Sometimes I am surprised I am still sane. Because of my experience I think I have an idea of how bad a perforation/obstruction must be and the journey that it took to get there

    Rose
    Last edited by Rose; 10-05-2014 at 05:09 AM.

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    Quote Originally Posted by dodi.houghton View Post
    there are just so many things to tell and so many things I want to ask but I am not sure how to start. Would it be ok to msg you privately
    Yes, it would be absolutely fine if you PM me. And I'm glad to see that Rose has responded with her experience of WG in the GI tract, a subject I really know nothing about. BTW, your picture is beautiful!
    Anne, dx'ed April 2011

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    Hi Dodi,
    My mom has MPA and they found some surface blood vessels exposed in the cecum and she has a peptic ulcer and barrett's esophagus which they think is from nsaids, but she didn't use nsaids that much.
    I think all her digestive issues are due to the vasculitis is not uncommon.
    Vasculitis attacks the small and sometimes medium blood vessels and it can happen anywhere in the body.
    Bowel perforation is very dangerous because of sepsis.
    It is something that requires immediate medical attention.

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    Thanks for your response! My daughter essentially passed away from it. She had complained for 3 days in hospital that she felt like she was being ripped apart inside. The doctors and nurses didn't take her seriously and told her it was because she was coming off IV pain meds

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