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Thread: Gastro. Issues - Others?

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    Default Re: Gastro. Issues - Others?

    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
    Last edited by Rose; 02-22-2018 at 11:36 AM.

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    Default Re: Gastro. Issues - Others?

    There many different subtypes of vasculitis, and these are treated in similar and overlapping ways.

    We may experience other afflictions under the vasculitis umbrella in addition to WG/GPA.

    For example, one of my first symptoms along with arthritis was tendinitis of rotator cuff aka frozen shoulder.
    I could not raise my hands above my head. Muscle strength would wear out very easily but take many days to recharge.
    If I opened a sealed jar today, it would take me at least 3 days before I could open another sealed jar again because all those muscles needed to grab and twist the lid to open jars got completely spent.

    That is NOT part of the WG/GPA 'basket of symptoms,' yet it went away when I began the WG/GPA treatment.
    In my case, frozen shoulder tendinitis and extreme muscle weakness was also caused by vasculitis.

    In my next appointment with my rheumatologist, I will try to find out which subtype of vasculitis has in it's 'basket of symptoms' frozen shoulder tendinitis.
    I want to know what else is in that other basket.

    Ed.
    Dx GPA 08/2017

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  5. #13
    Bing505z is offline Banned for being a douchebag
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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by seied View Post
    There many different subtypes of vasculitis, and these are treated in similar and overlapping ways.

    We may experience other afflictions under the vasculitis umbrella in addition to WG/GPA.

    For example, one of my first symptoms along with arthritis was tendinitis of rotator cuff aka frozen shoulder.
    I could not raise my hands above my head. Muscle strength would wear out very easily but take many days to recharge.
    If I opened a sealed jar today, it would take me at least 3 days before I could open another sealed jar again because all those muscles needed to grab and twist the lid to open jars got completely spent.

    That is NOT part of the WG/GPA 'basket of symptoms,' yet it went away when I began the WG/GPA treatment.
    In my case, frozen shoulder tendinitis and extreme muscle weakness was also caused by vasculitis.

    In my next appointment with my rheumatologist, I will try to find out which subtype of vasculitis has in it's 'basket of symptoms' frozen shoulder tendinitis.
    I want to know what else is in that other basket.

    Ed.
    Dx GPA 08/2017
    I had the same with my shoulder but it showed up nearly two years after being diagnosed with GPA and being treated. I was treated, in remission and then I was having soreness in my left shoulder. I knew I had a small tear in my left labrum (a physical therapist told me that people who have played sports or lifted weights usually will have small tears in their labrum and will not even know it) but the pain continued to grow and soon I could not raise my arm up. Went to my primary and he referred me to a physical therapist and he referred me to an orthopedic who specialized in shoulders. X-ray and then a MRI showed I had a tear in my rotator cuff and I had adhesive capsulitis (frozen shoulder). So, a week later I was on the operating table, Doc goes in to look and repair and only finds inflammation, shoots in some steroids, fixes the adhesive capsulitis by stretching the shoulder out, zips my shoulder back up and sent me on my way. He told me the inflammation was really bad and, on the MRI, it looked like a tear. Went to my rheumatologist and he kept me going to physical therapy and heat treatment. He told me he did not want to do prednisone because he thought it would just become a crutch for me to lean on, would do more damage than good in the long run, and that physical therapy along with the heat treatment would get me where I wanted to be without drugs. I was on the same page, strong and in no need of a crutch. So, after a month of physical therapy and heat treatment, all was good and not a problem since. Doc tells me arthritis, tendonitis etc. go right along with the GPA…but all you can do is march on…Cheers!!
    Last edited by Bing505z; 02-26-2018 at 07:06 AM.

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    Bing505z is offline Banned for being a douchebag
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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Helen View Post
    Diagnosed surprisingly by endoscopy, of chronic gastritis and esophageal stricture requiring dilation. However, it was the lab-biopsy results from stomach polyps that gave the diagnosis. The Gastro. inquired if I had sinus issues (which is one of my major health symptoms for years alongside asthma). Apparently, respiratory issues eventually can affect the gastro region, when it's not taken care of. I'm trying to understand, and very frustrated to be developing more progressive health issues I don't want. I cannot determine the cause, but know this all seem to have originated in my sinuses & skin rashes.

    Problem? Told again, "See an ENT to get this addressed". I mentioned in prior threads, this has been a major struggle for so long. Even with this dx, I'm still unable to, as it seems no one in the ENT field is familiar with this, even with chronic sinus disease and debilitating ear symptoms etc. Seems tied altogether. However, I am currently not "in distress" requiring E.R., but just constantly feeling unwell and very weak.

    Do others have gastro. problems with their symptoms?
    Suggestions of what I should do next to get help, since I can't from the Otolaryngology field. Thx -H.
    In 2016 I had a pain in my lower right stomach that had me rear up and drive to the ER. I went in and they did tests, dyes and scans and yada yada yada. Well they told me diverticulitis and gave me some pain meds, had a Gastro Doc with the facility come and meet up with me and we set up a follow up the following week. So, I go to see the Gastro Doc (oh my god, I did not go see my Rheumatologist…shocking!!!!) and he tells me that I do not have diverticulitis and from what he seen of the images and lab tests that it was just some inflammation, and since he seen in my reports that I have GPA, it was common. I scheduled a follow up 4 weeks later and images showed no inflammation and was sent on my way. I had the Gastro Doc send a report to my GPA Doc and he followed up with me and agreed with the Gastro and told me with GPA inflammation could pop up anywhere. Prednisone was not needed, and in fact he told me it could make it worse, and of course…I did not need a crutch to lean on. Cheers! Onward and Upward!

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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Bing505z View Post
    In 2016 I had a pain in my lower right stomach that had me rear up and drive to the ER. I went in and they did tests, dyes and scans and yada yada yada. Well they told me diverticulitis and gave me some pain meds, had a Gastro Doc with the facility come and meet up with me and we set up a follow up the following week. So, I go to see the Gastro Doc (oh my god, I did not go see my Rheumatologist…shocking!!!!) and he tells me that I do not have diverticulitis and from what he seen of the images and lab tests that it was just some inflammation, and since he seen in my reports that I have GPA, it was common. I scheduled a follow up 4 weeks later and images showed no inflammation and was sent on my way. I had the Gastro Doc send a report to my GPA Doc and he followed up with me and agreed with the Gastro and told me with GPA inflammation could pop up anywhere. Prednisone was not needed, and in fact he told me it could make it worse, and of course…I did not need a crutch to lean on. Cheers! Onward and Upward!
    How exactly did they treat the inflammation? Wait 4 weeks?

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    Bing505z is offline Banned for being a douchebag
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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by seied View Post
    How exactly did they treat the inflammation? Wait 4 weeks?
    Yup, that is exactly what they ordered to heal me, wait 4 weeks and then they crossed their arms and blinked their eyes and poooof my inflammation went away. Yawwwwnn. Seriously, lol, the ER said it was diverticulitis and I stayed one day in while they gave me antibiotics by IV and pain meds and I began a liquid diet (treating for diverticulitis). The staff Gastro at the facility met up with me and we set an appointment the following week. At the appointment he said it was not diverticulitis and at that time I was feeling good, and Doc decided to follow up in 4 weeks. In 4 weeks, images showed no inflammation. I believe my body did what it was supposed to do. Just because I have vasculitis doesn’t mean my body’s ability to fight inflammation goes to zero.

    As to Helen’s original post, the Gastro asking about the sinus, and determining what caused what. Well I asked my Doc the same, I had major nose/sinus issues and soon after found a huge mass in my right lung, and lost my right upper lobe, and I asked well what caused what??? He said no doctor knows this, and the arguments are similar, and he said it was like the chicken and the egg argument, lol, which came first??? For me, was it the granuloma mass in my lung or what was going on with my nose?? Well I believe they both developed at the same time, I just noticed one faster than the other. The pain from one showed up before the other.

    As for Seied’s question about meds, here are some things to read up on:

    - Doctors are quick to write scripts for antibiotics and prednisone..the go to drugs, in fact they over do it and their patients are paying the price. “Over the four decades I’ve been in health care, one of the most challenging obstacles I’ve faced with patients has been medically prescribed corticosteroids. At times when interviewing a new patient, I feel that I can simply assume they have been on steroids as the frequency of usage among patients we see is so great. Other common drugs used include extensive use of antibiotics, antacids, synthroid and anti-depressants… all making a patient’s journey back to health more difficult and complex. The use of corticosteroids, including prednisone, are almost universally prescribed by medical physicians of every variety…general practitioners, family practitioners, internists, dermatologists, rheumatologists, gastroenterologists, urologists, etc. Corticosteroids are prescribed for numerous conditions that involve inflammation and/or allergic reactions including asthma, eczema, dermatitis, ulcerative colitis, crohns disease, sinusitis, iriditis, ear inflammation, bronchitis, nephritis, arthritis, bursitis, neuritis, carditis, thyroiditis and virtually every other medical condition including some cancers. It is the go to drug for medical physicians, along with antibiotics, as it will suppress virtually any type of symptom…but at what cost?”

    http://www.goldbergclinic.com/blog/2...ith-prednisone


    - Your bodys digestive tract, gut and all, “is one of the core disease-fighting systems”, and prednisone can destroy your gut flora:

    "Steroid drugs such as prednisone are commonly prescribed for patients with Crohn’s disease to suppress the immune system and reduce intestinal inflammation.Like antibiotics, long-term use of steroid drugs can negatively affect the gut flora.
    Already, intestinal bacterial are involved in the metabolism of steroids which are transported to the liver and excreted into the gut through bile acids. After these bacteria metabolize the steroids, the metabolites are reabsorbed into the body.
    With long-term steroid intake, the intestinal bacteria responsible for the breakdown of steroids start to dominate over the other probiotics in the gut flora. This changes the composition of the gut flora and reduces its effectiveness in providing other benefits.
    Besides directly changing gut flora, steroid drugs are immunosuppressants. By suppressing the immune system, steroids reduces the body’s ability to quickly and effectively eliminate pathogenic microbes.
    In fact, prolonged administration of steroid drugs can increase the population of candida in the gut. This pathogenic yeast has been repeatedly proven to contribute to the development of Crohn’s disease."

    http://www.progressivehealth.com/cer...our-crohns.htm


    - The use of prednisone and other corticosteroids has led to the formation of gastric ulcers
    "
    Gastro-intestinal: The use of prednisone and other corticosteroids has led to the formation of gastric ulcers. When there are infections present in the GI tract steroids will exacerbate them. Steroids also lead to thinning of the gut lining which ironically can make the individual more susceptible to the very allergic reactions that they were given steroids for."

    http://www.goldbergclinic.com/blog/2...ith-prednisone



    - The Pros and Cons of Taking Steroids for Ulcerative Colitis

    “Steroids can reduce inflammation but they don’t heal the inside,” says David Hudesman, MD, medical director of the inflammatory bowel disease center at NYU Langone in New York City. “They’re like a Band-Aid.”

    When Not to Take Steroids
    But what if symptoms recur months after you’ve tapered off steroids?
    “The response shouldn’t be to go back on prednisone,” Hudesman says. “You shouldn’t be on multiple courses of steroids, even two courses, within a year.”

    Instead, talk to your doctor about changing your maintenance medication, or adding an immunosuppressant or biologic agent. “Whatever is a reasonable time for maintenance medication, we try to give it,” Hudesman says. “If you’re not getting there, then we consider moving medications, or make sure something else isn’t complicating your disease.”

    https://www.everydayhealth.com/ulcer...ative-colitis/



    So as I read about prednisone's ability to kill a man's sperm (and after 60 years of prednisone being used, doctors are not really sure what it does to a woman's fertility..yikes), cause infections, etc. etc., well it sounds almost like a carcinogen, I wanted nothing to do with pred'. From what I read from the above web links, lets say a Patient John Doe is newly diagnosed with vasculitis with no stomach issues at all, just the normal sinus and lung stuff. He is pounded with prednisone and cytoxan in the beginning to get things under control, and let's say the game plan was to keep him on a low dose of pred' for awhile, but then his lazy ass doctor ups the dose with every single ailment over and over again for the next 3 to five years. From what I have read, John Doe will probably have issues with his digestive track, and probably in a lot other areas. We all know people react differently, so you know how that goes......Onward and Upward! Cheers!!!
    Last edited by Bing505z; 02-27-2018 at 05:18 PM.

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    Default Re: Gastro. Issues - Others?

    I agree with Bing's info. The Gut is a major factor to overall health. I am not on any medication that may have caused my current gastro issue. However, I did develop ulcers in the past from taking too many NSAIDs for my "mystery" illness. The Gastro. said NOT to take those...damaging to the gut. But I still do on occasions for headaches. I take Gabapentin and would not want to be prescribed any more damaging meds. if possible which is a concern of mine. Only when it's really necessary. A lot of these meds also cause dementia.

    My appt. at the ENT did not go well. Once again, the circle of repeated dismissal to all my current horrible symptoms which is mainly coming from my ear and nose. It was demoralizing because he was so dismissive and assuming the nose requires GREEN crust and bone erosion not blood type which I have. The Gastro. was the first to point out Wegener's, but the ENT shucked it out, by a quick evaluation and assumption. I posted this experience in another thread under a sinus topic. I just need an ENT that listens to evaluate my ear/ETs.

    I'm feeling pretty lost right now from the ENT's constant behaviors and avoiding to investigate my chronic symptoms. I am also still struggling to find an unbiased Rheumatologist who will listen to me as a "whole". Two found here, do not specialized in GPA, want all records to determine acceptance however my ENT reports disregards this, so I am unable to get in. My GP does not understand and said just go get bloodwork done to confirm it. I am not having "flares" at this time so it will likely turn up normal all over again. It should have been done during hospitalizations and while really sick. No one will assess me as a whole and look at my history.
    Any guidance from anyone here would be appreciated. Thank you -Helen
    Last edited by Helen; 02-28-2018 at 03:52 PM.

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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Helen View Post
    My appt. at the ENT did not go well.
    There is such thing as a bad doctor.
    I've been to 3 ENTs, none of them any good. Fortunately, I don't have any major issues so far, but I'm still looking for a good one to add to my team of doctors.

    GPA sufferers know, specially at initial onset (what I call 'first flare up') is not diagnosed resulting in a lot of damage and injury that should have been avoided.

    Where do you live? Maybe someone here knows a decent ENT.

    Ed.

  14. #19
    Bing505z is offline Banned for being a douchebag
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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Helen View Post

    I'm feeling pretty lost right now from the ENT's constant behaviors and avoiding to investigate my chronic symptoms. I am also still struggling to find an unbiased Rheumatologist who will listen to me as a "whole". Two found here, do not specialized in GPA, want all records to determine acceptance however my ENT reports disregards this, so I am unable to get in. My GP does not understand and said just go get bloodwork done to confirm it. I am not having "flares" at this time so it will likely turn up normal all over again. It should have been done during hospitalizations and while really sick. No one will assess me as a whole and look at my history.
    Any guidance from anyone here would be appreciated. Thank you -Helen
    So, the "two found here", you are talking about ENTs or Rheaumatologists who do not specialize in GPA? As rare as GPA is, not gonna find many..I would wager the percent who have not treated GPA specifically would be in the high 90s. Try an internal medicine doc in your network, and maybe he/she can refer you to an ENT. The internal med doc can tackle the other side to give you insight, those who think this type of doc couldn't handle it are ridiculous.

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    Default Re: Gastro. Issues - Others?

    Quote Originally Posted by Bing505z View Post
    ...So, the "two found here", you are talking about ENTs or Rheaumatologists who do not specialize in GPA?...
    Hi Bing, I was referring to Rheumatology, where one was under the Vasculitis Foundation. The front desk claimed to not know if their own Rheumatology Dr. in the next room had GPA knowledge. It's a simple question they could've inquired, but they wouldn't. Somehow, someone (suspect the ENT) alert them to state "your issues are likely allergies" and "go to an allergy clinic", to decline an appt. This came from front desk staff who I've never met. I don't know how, but appears by reviewing patient's info. in the computer medical portal system. I simply do not know. (The only other person to throw out "allergies" was the recent ENT). So, oddly denied a Rheumatology consult. based upon this

    What exactly is an Internal medicine Dr? What's the difference between this and a GP?
    I wish I was able to be seen by the ENT my Gastro specialist (who suspected/dx Wegeners) referred me to. But the ENT agency blocked it, claiming it was "Against Policy" and only allowed to see the same lousy one from the past. I will eventually post a (too long) explanation of this ENT exp. to AnneKat. I hope members here will forgive me for it's length, as it was too difficult to summarize the situation. -H.
    Last edited by Helen; 03-02-2018 at 09:32 PM.

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