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Thread: Bowel Flare

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    Default Bowel Flare

    Cant believe it is almost 2 years since I posted here. I have been through a rough patch starting in November 2014. The first symptoms was bad reflux causing oesophagitis and my usual medication was not controlling it. A gastroscopy saw quite severe oesophagitis and not much else so the PPI's were increased. By now it is December and I feel awful. I have started to lose my appetite and have frequent daily diarrhoea. A consultation with the Rheumatologist and blood test showed there was no disease activity.... infact my kidney function was the best it had ever been. As the weeks passed, the diarrhoea got worse having to visit the loo 30 plus time a day. I was not eating, no appetite though at the same time not nauseus. I was able to tolerate Ensure which I drank 3 times per day. In mid January the Gastroenterologist admitted me to hospital for tests, including tests for pancreatic tumours, and again everything came back normal. I was stated on Asacol 800mgs 3 times daily and sent on my way.

    Early February I was back in the Rheumatologist office. This time he decided to do an ANCA test although there was no indication as again the other blood test were fine. In the meantime he ordered a 3 day consecutive coarse of 500mgs IV Solumedrol. After the first infusion I danced out of that hospital and straight to the nearest restaurant. I felt great. My body's response to the Solumedrol was almost immediate. it was then confirmed to me (which I suspected all along) that I had been having a Wegeners's flare in my bowel. The result of the ANCA test which took a few weeks to come through was highly positive...the first postive ANCA since diagnosis.

    A few hours after the 3rd treatment of IV Solumedrol, I became extremely tired and took myself off to bed. I was woken with severe pain in my left lower quadrant. I recognized what was going on as I have suffered in the past from a few bouts of diverticulitis which were successfully treated by the GP. This time though the pain was much worse than I had experienced before. I was also shivering and had a raised temperature. A few minutes after midnight saw me at the emergency room. I was diagnosed with diverticulitis and admitted. I spent the next week in hospital on IV antibiotics followed by 1 week oral antibiotics at home.

    Three weeks after this saw me back again at the hospital emergency room where I was again admitted with yet another bout of diverticulits. treated yet again with IV antiobiotics and sent home with oral antibiotics. This pattern continued for 6 months. I was having bouts of diverticulitis every month which required hospitalization and IV antibiotics. The surgeon said he would not operate on me because of the Wegener's unless "my back was to the wall" ....not that I requested an op!

    Between attacks of diverticulitis I remained well as far as the Wegeners was concerned. The Solumedrol infusions did the job in dampening the Wegeners flare in my bowel, (no more diarrhoea, that awful sick feeling had gone and my appetite was back) but in doing so lowered my immunity to the extent that I could not fight off the bacterial infection causing the diverticulitis.

    In August 2015 I had a sigmoidoscopy (bowel too inflamed for colonoscopy) which showed inflammation, inconclusive of cause but possible vasculitis.

    How to reduce the inflammation in my bowel? I spent many hours researching on the internet and discovered the Specific Carbihydrate Diet. I started on the diet soon afterwards and followed it religiously for 5 months. During this time I lost 30 pounds and felt very well. I lost too much weight on my face though and started to look very gaunt so I decided to introduce some 'disallowed" carbs back into my diet inearly 2016. So far, so good. I have discovered that as long as I keep the carbs consumed to around 40g a day all is good. I have not had an attack of diverticulitis since July 2015

    Sorry for such a long post. I only hope my experience will help somebody especially those with bowel involvement as a flare in the bowel may not show up in the blood tests checking for disease activity. I went undiagnosed for 17 years as all my symptoms were in my bowel and every test that was done then came back negative. It was not until the disease spread to my sinuses, lungs and kidneys that I was diagnosed. A colonoscopy 2 years after diagnosis revealed that there was mild vasculitis present in my bowel and that was after I had been on immunosuppressant treatment for 2 years. When I asked the doctor why this was never discovered before (as I had a few colonoscopies during those 17 years) he said it was because they were not looking for it. Apparently a special test has to be requested to check the biopsy sample for vasculitis and no-one ever requested it........probably because there was no reason to as all blood work and test were normal just as it was again with this flare that started in November 2014.

    In future, if just the thought that I might be flaring enters my head I will insist on an ANCA test even if the other blood work is normal. Doubt if my doctor would refuse lol

    Yes, as often mentioned, this is one sneaky disease!!

    Rose

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    Thanks for the post, Rose, and sorry you have been going through all this. I also was found to have esophagtis earlier this year, in my case due to a moderate hiatal hernia and acid reflux from years of never using a PPI while on pred. Since I was anemic from losing blood, the doc was to perform a colonoscopy along with the endoscopy, but was unable to perform more than a sigmoidoscopy because I kept coughing when the scope got to a certain point and he was afraid of piercing my colon. So I've done an alternative advanced test analyzing DNA from a stool sample, and have not got the results back yet, as to pre-cancerous polyps or any other reason to try for the colonoscopy again. Your experience makes me wonder about the possibility of WG in the colon. I will discuss this with the doc when I see him about the results of the Cologuard test. I like and trust this gastroenterologist, he is older and very experienced, very personable, unlike some docs I've had, but may have dealt with WG before very little if ever. He certainly knows what it is, though, and is a lot easier to talk to than my current WG-treating doc, who, luckily for me is closing his practice and I will be finding a new one! I know there's a lot more to your story and I really enjoyed the description of your dancing to the nearest restaurant after the steroid infusion! I'm glad things seem to be leveling out, largely due to your own ingenuity of figuring out what carbs not to eat. Best to you!
    Anne, dx'ed April 2011

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    Nice chatting to you again, Annekat. 17 years undiagnosed was hell. I think had I bled from my bowel during those years or suffered from anaemia which I think is the usual case with bowel involvement, then there might have been a quicker diagnosis. For me it was just pain like I was coming down with gastro. Pain is a symptom, not a sign and with the absence of any positive test result, I was diagnosed as a hypochondriac....not to my face but I could read the signs. It all makes sense now that I understand how Wegeners attacks the small blood vessels which would also be inflamed when infection was present and so causing similar symptoms.

    Within a few weeks of starting treatment following it attacking my lungs and kidneys in 2008 my bowel symptoms improved drastically. Bowel involvement is extremely rare and even more rare is when the bowel is the first organ to be attacked by Wegeners.

    I also have a hiatus hernia, first symptoms of which was my during my first pregnancy. Oh, how I suffered from this during both my pregnancies. The moment the babies were born all symptoms disappeared. Having the Wegeners in my bowel a few years later caused terrible reflux, I guess from all the distension caused by the inflammation in the GI system. In 1998 I was diagnosed with Barretts Oesophagus. To date there is no dysplasia but it is a worry.

    I hope your doctor gets to the root of what is causing your anaemia. I hope he is open to the possibility that it might be Wegeners. When I realized that my treatment had improved all my bowel symptoms, I asked my Gastroenterologist at the time if Wegeners could have attacked my bowel and his answer was "no, it does not attack the GI system"....and he was a professor!! There are a few case studies on the net about GI involvement Luckily for me, he was on holiday when I had to have the colonoscopy in 2010 and his locum at the time was open to the possibility and ordered the test. He is now my GI doctor.

    Yes, it is so important to have a doctor whom you trust and whom you can talk to as well as one who believes your symptoms and does not just rely on test results. I hope you find another WG-treating doctor just like this also. I wish you all the best

    Rose

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    Rose, my doc feels that the anemia was largely caused by the bleeding in my esophagus from the ulcers there, and my blood numbers have risen to where I'm no longer anemic, after several months of iron pills and then PPI s, but of course we both still want to know if there is anything going on in the colon. I think he said that WG is rare in the colon, but I had heard of cases and said nothing. So we will see. I'm sorry you had such a rough time of it with your pregnancies and all.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Welcome back, Rose. I missed you around.

    I also have bowel involvement. Thanks a lot for sharing your story. You help me more then you imagine.

    Sorry that you had it so rough. Are you not on any pred when flaring ? Not on any wg med ? I think you must get some. What are you eating in your diet ?

    My case is very similar. Many years of misdiagnosis of IBS. Only after wg started acutely and I saw the correlation with other wg sympyoms' occurance, that I realized it might be wg in the colon. After meeting few BAD gastro docs I found an old one who confirmed it, also according to calprotectin test.

    Rtx brought me to remission so the colon was also ok. Even when I was in remission I couldnt eat many things, only apple and banana, no other fruits, only potatos and zuchini, no other veggies, no meat, only chicken or salmon, no high fat cheese, no junk food, no pizza or ice cream or others, no food in restaurants, etc. Not complaining. I wish now I could eat those.

    October 2015 I was out of remission. Started with eyes flaring. Since then I already got 2 rounds of rtx but my colon refuses to revover. The last months the diarrhea became worse, crazy, wattery and countless. No bleeding. I can now only eat safely toasts, rice, chicken plus chicken soup and boiled eggs. Anytging else costs me. I have vitamin C deficiency and all the multi vitamins and vitamins that I tried, made it worse.

    Desparate, I found a new great gastro dr. I think that my beautiful dr. Phil sent him to me.

    My new dr. Is sending me to many tests. I had stomach CT last Tuesday. Had to drink iodine before. Made me nausea. No results yet.

    I will need to do colonscopy and gastroscopy next month. I never did them. Too scared. But now I am too desparate.

    Any info about those tests is welcomed. Like what meds did you use for preparation ? Any risks ? Anything a weggie should know in advance ? What to ask to check in the biopsy ?

    Its scary but I am too tired to continue like that.

    My new dr. Also sends me to endocrinologist. He said that it might be a problem with the adrenal because of many years on pred.

    I am allowed to take more pred anytime I feel like so when I cant bear it anymore, I enjoy the 30mg pred for few days. Still cateful with eating.

    Sorry for the long post. It is an agony.
    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.

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    I have been having pain in the upper left and center abdominal areas for at least 2 yrs now. I have also been to several gastro docs and have had various tests, with varying ideas as to what is causing the pain. I have reflux, a hiatal hernia, an obstruction in the spinster at the top of stomach and 20-50 fundic gland polyps in my stomach. They tell me that the polyps are from taking PPI's for years. I have had bad bouts of constipation and sometimes feel like I am getting blockages. My problem is that I can't seem to get any of these docs to do a colonoscopy and to ck for Weg's. My Weg's specialists told me she has never heard of anyone having it in their intestines. I had one guy talk to me about having a bi-pass, saying that it would take care of the reflux,polyps, obstruction and hiatal hernia, and wouldn't I like to loss some weight any way? I kind of feel that it would be quite an extreme thing to do. I right now don't actually know what to do, but am getting really exhausted with the pain and getting the run around. I have tried eating better and it does not seem to makes much of a difference. I am having my next Rtx in 2wks and after that I am going to start trying to get some more investigation done with this stomach pain. I sure do wish you all the best for getting it under control.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Hi Alysia

    When I had this flare I was still on my medication of Cellcept 1.5G and Pred 2.5 mgs, the same that has kept me in drug induced remission for many years and what I take today to keep me in remission. During the flare I had many blood tests checking for disease activity and everything returned normal. The decision to treat me with the Solumedrol was a last resort. I dont think my Rheumatologist thought that Wegener's was causing my GI symptoms but as my Gastro could not find what was causing the diarrhoea, he decided it was worth a shot as he could see how ill I looked and there were really no more options. As i said the results were immediate and I got my life back...even though I suffered from repeat bouts of Diverticulitis requiring IV antibiotics over the following 6 months or so, life was much better from the point of view that that that terrible ill feeling which I cannot explain had gone, my appetite and energy were back, by bloodshot eyes were no longer and the 30+ daily bouts of diarrhoea were gone.

    As I mentioned I started having problems with the repeated attacks of Diverticulitis. Two reasons I think for this. First being because the Solumedrol surpressed my immune system and secondly, my bowels were very inflamed caused by the months of diarrhoea which surely predisposed me to the repeated attacks of the diverticulitis. I found that I could tolerate few foods, certainly no high fibre foods so ate very few veggies and fruit. I ate very similar to you. I lived on bananas , avos, baby marrows, apples chicken, eggs lettuce, mince meat. No sugar, no wheat. drank mostly water and zero caffeine herb tea. When I was feeling better I researched the Specific Carbohydrate Diet. This diet was developed to help those with Crohne's Disease and Ulcerative Colitis (both of which I was tested for during the flare) It works by helping reduce the inflammation in the bowel by starving the bad bacteria that get their food from certain foods we eat and so by cutting out these foods and introducing large amounts of good bacteria the health of the bowel is restored. Anyway, please research this as it has helped me tremendously. it has also helped many people diagnosed with IBS and diverticulitis...actually anyone who suffers from any sort of GI problems should try this out. Also check out scdlifestyle.com. Today, although I still keep away from some fruit and vegatables, especially high fibre ones like spinich, cabbage etc, I can tolerate many more foods. I do though keep my carbohydrate consumption very low and should my tummy start to play up a bit I revert to the SCD diet and follow it 100%

    The Gastroscopy does not require any preparation except fasting. Preparation for the colonoscopy is a bit more involved.....lots of info on the internet. My last colonoscopy was in 2010 and being a weggie no-one said anything and I never had any problems as a result of it. The Sigmoidoscopy I only had to fast.

    I have a copy of my biopsy report from 2010 here so I will state the exact words used as far as finding Wegener's Granulomatosis in the bowel biopsy sample:

    SMA - positive around walls of small blood vessels, confirming the presence of a mild active vasculitis. In view of the finding it is strongly suggested that the possibility of Wegener's Granulomatosis be excluded with activity markers and appropriate serology.

    Just to mention at that time of the colonoscopy I was in remission and on medication. The reason for the colonoscopy was that I had a bleed from my bowel. no pain just that which had to be investigated. This was the first and only time this had happened to me and they never did find what caused the bleed though they could see many diverticuli. I had asked the Gastro beforehand if he could check for Wegeners as,within days of being treated on diagnosis in 2008, my bowel symptoms which I had been suffering from for many years improved dramatically.

    SMA Must be the test he asked for. i don't know what that stands for.

    Hope this help Alysia and that you soon get answers to your problems. If you are absolutely convinced that your bowel symptoms are being caused by Wegeners would it hurt to have some IV Solumedrol to see f it helps? Just think with me they might have tried that sooner rather than later.

    Rose

    Also check out comments on Amazon on the book by Elaine Gottschall called 'Breaking the Vicious Cycle: Intestinal Health Through Diet' There are also many websites on the internet about the SCD diet.
    Last edited by Rose; 11-28-2016 at 01:13 AM.

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    Hi Jaha

    Yes I also think a bypass op is extreme especially since you have Wegeners and all ops should be avoided if possible. On the diet I mentioned, I lost 30lbs in weight in 5 months. At first it seemed a bit too difficult for me and time consuming as they suggested making ones own sauces, baking one's own bread and cakes ect,.... all too involved for me, being someone who is not too fond of cooking in the first place so all I did was keep everything simple. So it would be plain cooked meat with the vegetables that were allowed and what I could tolerate. Avos and boiled eggs were always available for a quick snack. If I craved something sweet it would be tinned apples and honey or banana fried in butter served with honey. The diet really helped me. I have not had an attack of Diverticulitis since starting it and my reflux symptoms are much better.

    I am though still taking PPI's.and have been a for many years....mid 90's. What I have found that when my bowel is bothering me, my reflux gets much worse even on treatment for it. So if the inflammation in the GI tract is reduced there is less reflux and reducing the inflammation is with the diet. Mind you I also take Asocol from March 2015 which maybe also helping though I am aware that when I consume more "illegal carbs" than I should I get a warning pain in my lower left quadrant or maybe IBS symptoms...... so certain carbs are a problem for me.

    The bowel flare was quite different from IBS or diverticulitis. Cant really put into words how terribly ill I felt and how immediate the relief was with the Solumedrol. One thing I am sure of is that having undiagnosed Wegeners in my bowel for so many years has caused me all these other GI problems....IBS, reflux oesophagitis and probably the diverticular disease

    Give the diet a try and also check out the scdlifestyle.com site. Eating better may not help. Some foods you may think are good for you, may not be For example, a banana green or yellow is not allowed but a very ripe banana with black spots on the skin is allowed.

    I also hope that you also get to the bottom of the cause of your problems. Also check out the Breaking the Vicious Cycle - The Specific Carbohydrate Diet site as well as the comments on Amazon on the book by Elaine Gottschall called ' Breaking the Vicious Cycle Intestinal Health Through Diet'

    I really do hope that it is not Wegeners causing your GI symptoms and you find some relief using the diet.

    Rose
    Last edited by Rose; 11-28-2016 at 09:17 PM.

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    Rose,
    Thank you for your suggestions and links. Take care of your self and I hope your bowels continue to heal, with your diet and treatments.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Hi Rose.
    Thanks a lot for all the info. You are very kind and helpful.

    I will search to read about those diets although I am at a point in which I cant quit the few things that I am able to eat and I cant try new things. It "costs" me too much. I cant bear most of the foods that you can. Black banana for example or honey are disaster for me.

    I will also try to check what SMA stand for.

    Over the years I knew that my colon teacted to the WG activity because the symptoms came with other WG symptoms. But in the last months I am less sure....

    As for the cellcept, do you know that it can cause colitis ? Are you still on it ? Are you on any daily pred ?
    I will not go for the solumedrol because I can take pred on my own as much as I need. But I cant afford taking too much pred.

    Jana,

    I am so sorry for your pain. A little tip: when the GI issues are wg related in my case, more pred can make the difference. 30mg pred and I am as good as new.

    But I am the pred fan.
    Last edited by Alysia; 12-01-2016 at 04:45 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.

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