Bowel Flare

[Rose]

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

[annekat]

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!

[Rose]

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

[annekat]

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

[Alysia]

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.

[Jaha]

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.

[Rose]

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.

[Rose]

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 (http://www.breakingtheviciouscycle.info) 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

[Jaha]

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.

[Alysia]

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.

[Rose]

Thanks Alysia.

Now I have experienced a flare in the bowel with no disease activity picked up in the routine blood work , when I have similar symptoms and think it maybe a flare. I will definitely try increasing pred to see if it settles it.

Yes. I am still on Cellcept and low dose pred. I have been on the same dosage of Cellcept since 2009. I do very well on it with my kidney function almost within the normal range for my age, no problems with sinuses and lungs. Unfortunately seems I am prone to infections .... UTI's and diverticulitis both of which I have a predisposing factors apart from the Cellcept so by changing the maintenance drug, I doubt if I would have relief from the infections. The diet is helping a lot for the bowels so from that point I am doing well.

Funny how food affects people differently. My son was suffering from IBS a few years ago which was really interfering with his life. Anyway, I discovered the FODMAP diet and we tried it out and to my amazement and his, we found food that he was reacting to and by eliminating them, he was much better. Apple, would you believe, was a major one and so were avocados and honey!!! I have no problems with these foods.

Rose

[Alysia]

Thank you Rose.

I also had many UTI's but being on maintenance antibiotics for few months made them much less frequent. It was going from one to the other few days after finishing the antibiotics and now it is only every few weeks or months. Thanks God.

Do you have any issues with your liver ?

Mine came back in the CT results as a bit fatty (which is weired as I didnt gain any weight, only lost some) and heterogenous. I will do an ultra sound next week. The blood tests for the liver functions are ok, so no idea what it means and if it is related to the other GI issues or to wg or what.

[Rose]

Hi Alyssia

At the moment I dont have any issues with my liver and the enzymes are usually within normal limits. At times I have had enzymes a bit higher than normal but as long as they stay within 2 digits the doctor is not too worried.

When they did an ultrasound in February 2008 when they were trying to diagnose me. they told me then that i had a fatty liver but they did not seem too concerned. Anyway, I have had a few scans since and it has never been mentioned. Do I no longer have a fatty liver or did they just think it was unimportant they did not comment on it, I don't know. I must ask the next time. I know that many people have this and is usually caused by diet but. I believe there are other causes so maybe it could be the Wegs. Hope you get the answers soon.

Rose

[Debbie C]

Have any of you ever tried using a drug called Carafate ? My gastro dr. gave it to me since I have acid reflux. You are to take it on an empty stomach and it coates your stomach lining. I just starting taking it again and it does help. On my last er visit they did a ct of my abdomen and pelvic area and found I have diverticuli but didn't tell me to do anything about it ( of course ) Also do any of you take a probiatic (sp?) this would help get rid of any bad bacteria in your gut.
Rose, you should try using coconut oil instead of butter when frying things like bananas,its a lot better for you.
Alyssia,do not be worried about your upcoming procedures. They will put you to sleep and it only takes a few minutes. The worst thing is the prep for the colonoscopy.You will have to drink this nasty tasting stuff and will be in and out of the bathroom most of the night. But you will be fine,,don't worry.
Jana,30-50 polyps in your stomach..my gosh.Why did they not remove some of them while they were there. Please don't do the surgery,I think you will regret it and it does seem a bit extreme.

I hope everyone on here starts to feel better so you can enjoy the holidays

[Rose]

Thank you Debbie

I know that coconut oil is good for you but I could not take the one that had a strong smell of coconut but have recently discovered odourless one which I have started to use in frying etc.

As for the Diverticuli....they say 50% of adults have at least one diverticuli by the time they reach the age of 50 and by 80 years old that percentage is around 90 percent This condition is called Diverticulosis and as long as the diverticuli do not get infected, they will not cause problems. 15 to 20% I think it is that get at least one attack of diverticulitis and a few unfortunates like myself, get repeated attacks. I make my own yoghurt and 'incubate" it for 24 hours" which renders it rich in probiotics. definitely helps a lot. This is part of the SCD diet and as I said, I have not had an attack since starting the diet in July 2015

If I keep my self control and be careful what ​ eat, all should be OK but it will be difficult at this time of year.

[Jaha]

I am not going to get any bi-pass surgery, Deb, thanks for your concern. That was an unreal solution to my problems. I am not sure why they did not take a few at least out, especially the larger ones. I am still in a quest to get the stomach issues resolved.
Rose, there was someone else on here that has trouble with their bowels while taking Cellcept. I took it for two years and had to go off from it, because it made me feel like I was having small strokes. I wish you all the best in getting your bowels calmed down.

[Rose]

Thanks Jaha

My bowels are great at the moment. (lol) Absolutely no problems and there have been no problems now for 1 and half years... I am sure because of the diet and Cellcept. Cellcept is not the cause of my digestive problems (past) though probably I am more prone to infections being immune suppressed but that I would be with any of the drugs used in the treatment of this disease.

I had lots of problems with my bowel for 17 years (before Cellcept) due to undiagnosed Wegeners in the bowel. That ongoing inflammation caused by Wegeners is when I developed IBS, episodes of diverticulitis and severe reflux. The valve between my oesophagus and stomach is totally gone and this happened 10 years before diagnosis. The Cellcept has helped with all my digestive problems by dampening the inflammation. And cellcept has been great in controlling the Wegeners in my other organs affected..the lungs sinuses kidneys. I really do well on it.

I have read somewhere that a serious flare is often seen around 8 years after diagnosis and treatment and it usually occurs in the organ that was first attacked by Wegeners despite still being on treatment. This is what happened to me in November 2014. Interesting. Has anyone else found this?

Rose

[Alysia]

I have read somewhere that a serious flare is often seen around 8 years after diagnosis and treatment and it usually occurs in the organ that was first attacked by Wegeners despite still being on treatment. This is what happened to me in November 2014. Interesting. Has anyone else found this?

Rose

Wow. Rose, it might be my case. I am now 8 years since diagnosis. I suffer from my colon since age 11. Then false dx at age 17 of IBS. While I also had weired arthritis with ulcers on the skin. Maybe it was wg. Because the scars that remained for years disapeared after rtx.

Right now I dont have much wg symptoms but still having crazy diarrhea. Colonscopy and gastroscopy will be next week. Some findings with my liver too. No idea what it means.

Thanks a lot for your input Deb. I couldnt bear probiotics. It made me even more crazy diarrhea. As for carafate I guess its for the upper GI.

Jana, sending prayers your way ♡

[Alysia]

Rose, I couldnt find what SMA stands for. Do you have any more info ?

[Rose]

Hi Alysia

i dont have have any more info. But from the histology report I think we can deduce that it is some substance released by the small blood vessels which are. Inflamed and possibly released during an immune reaction. I will post again what the report says:

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

i am sure your Gastro will know what SMA stands for.

Rose

[Alysia]

Thanks a lot Rose. God bless you.

[Alysia]

I had the colonscopy and gastroscopy on wednesday afternoon. Was one of the toughests. If I had crazy diarrhea before I dont have words to describe it after the preparation. It just refuses to stop. Even long after I stopped drinking. It continued 10 min before the procedure and right after. At least when I woke up from the sedation I knew that my beautiful dr. Phil was with me. I felt his sweet presence watching over me.
The dr. Didnt see anything special. He took biopsies. Will wait for answers.
The super crazy diarrhea continued until it woke me up at night between Thursday and Friday. So I took 30mg pred and went back to sleep. In the morning I had only twice. But now, Friday night, about 22 hours after the pred I got another super crazy diarrhea. I have also nausea and I feel like I am freezing eventhough the heat is on and I am under good blanket. Also tired like hell. Is that how it is or something is wrong ? I cant imagine going anywhere to be checked. Just cant wait to the morning to take more pred...

[Rose]

Hi Alysia

Sorry you are going through this. I have had quite a few colonoscopies, around 5or 6 over the past 25 years and the prep is not pleasant to say the least. On two occasions (think the 3rd and the 4th) I had a reaction to the anaesthetic which only showed up about 6 hours after the procedure. I was already on my way home when suddenly I became very nauseous. During the next few hours I developed body aches and a slightly raised temp and was feeling awful. I took to my bed and there I stayed for the following 24 hours. This first time I thought that I had come down with a flu but got over it quickly which I thought at the time was unusual. A few years later, another colonoscopy and I got the very same symptoms also occurring about 6 hours following the procedure. Now I knew it was the anaesthetic. I phoned the anaethetist who did both procedures and found out the Propofol was used though he said he did not think it was that which caused the flu like symptoms. Since then I have refused Propofol when havng an anaesthetic and never had the symptoms again. You can have weird delayed body reactions to the anaesthetic though I am not saying that this is the case with you. Think you should contact someone if you don't see an improvement soon

Have you ever taken Imodium for the diarrhoea. When I had my bowel flare and the constant diarrhoea I took Imodium to stop the diarrhoea when I needed to get to the doctor or the hospital. Depending on how much I took it gave me many hours of relief.


Rose

[Alysia]

Thank you so much Rose, for your support and for sharing your experience and wisdom. Maybe I am reacting to the sedation stuff as well. Still super crazy diarrhea at night and this morning. Never tried Imodium. I dont have any. I took 25mg pred this morning and I eat rice...

Merry Christmass ☆☆☆☆

[Rose]

H Alyssia

speak to your doctor on using Imodium to control your diarrhoea. I do know that people who suffer from chronic diarrhoea who have been investigated but he cause has not been found, do get relief using Imodium. You can buy it over the counter but I think with your medical problems you should first discuss its use with your doctor. I don't know if you can use it long term.

Rose

[Alysia]

My colonscopy's biopsies came back: "non specific colitis". Which leads me no where.

I met my gastro dr. and he will send the biopsies to a special pathologist to check them again.

Meantime he sent me to more tests. He prescribed rifaximine. Anyone knows it ? I didn't start it yet. A nutrition specialist prescribed me formula: modulen-IBD. I didn't start it yet as well. Anyone knows it ?

The diarrhea is less crazy. Still going a lot to the toilet. Maybe its a bit better because it is now the time when rtx works with full efficiency since I got the last round. I still have crazy stomach pains, day and nights and cant eat veggies and fruits, only a bit of pears. Thanks God for pears.

[Rose]

Hi Alysia

Rifaximine was considered for me when I was having repeat bouts of Diverticulitis. However turned out not an option as it was unavailable in South AfricA at that time...don't knows f that is still the case. As you probably know it is an antibiotic which works in the bowel and very little is absorbed into the blood stream. I don't know about the formula you mentioned but I am convinced that diet has a huge part to play in the healing of the digestive tract.

Did you mention the SMA test to your doctor? I know how frustred you must feel getting no real answer. I really do hope the new treatment plan helps.

Rose

[Alysia]

Thank you so much Rose for being so helpful all the way. God bless you.

I understood that Rifaximine is specific for the GI system and that it covers many options of infections. Meantime the health service here refused to pay for it so I guess I will have to pay on my own. 2 weeks treatment will cost me about 70$. Its a shame because I already pay for health insurance each month more then 200$ not including meds, docs visits etc.

Yesterday I felt so desparate after I got the refuse msg, my stomach was aching like hell and I visit the toilet about 8 times. So I decided on my own to change the plan (which was first rifaximine and then the formula). I started with the formula.

Thanks be to God. I started to drink it very slowly over couple of hours without eating anything else. Only drinking water. It tastes not too bad. Vanile flavour. But who cares ? About 4-5 hours later, Hallelluya, the stomach stopped aching. Feeling better today and I continue to drink it.

I hope it will continue to help. This is a link for the formula that I use, maybe it can help someone:

https://www.nestlehealthscience.com/brands/modulen

[drz]

Thank you so much Rose for being so helpful all the way. God bless you.

I understood that Rifaximine is specific for the GI system and that it covers many options of infections. Meantime the health service here refused to pay for it so I guess I will have to pay on my own. 2 weeks treatment will cost me about 70$. Its a shame because I already pay for health insurance each month more then 200$ not including meds, docs visits etc.

Yesterday I felt so desperate after I got the refuse msg, my stomach was aching like hell and I visit the toilet about 8 times. So I decided on my own to change the plan (which was first rifaximine and then the formula). I started with the formula.


Is there any appeal process?

[Alysia]

Is there any appeal process?

I can try to appeal but I will keep my fighting energy to try to get approval for participation in the formula. It is going to cost me much more, not sure how much yet, about 250$ or more per month. And they will not help without me fighting.
Its a shame.

Thank you drz. I hope that you are doing ok. God bless you.

[drz]

It sounds like your appeal process is bit more daunting than what i have experienced. When my insurance refuse coverage for some med I need I check the box to appeal and and have my physician send a note on why I need it and they have always so far approved it. One time the pharmacy kept at it for three months to get it done but that was due to lack of response from my physician at the time so I had to replace her with one that is more responsive to my needs. Another doctor suggested the need for me to change cause I guess it was widely known by her peers that she was swamped by her caseload.

[Jules]

Hi All, like Rose I haven't posted in a while but constantly check-in to see how everyone's doing. Rose & Alyssia, I truly hope your symptoms have continued to improve and that you are getting some relief from meds.

I too am experiencing my first flare since diagnosis at the end of 2010/2011. This time it again started with severe headaches and a CT scan last week showed inflammation in left sinsus, along with bloods which came back with positive ANCA. However, I'm a bit confused and wonder if anyone has any thoughts?

Prior to my original diagnosis I had been suffering with IBD (ulcerative proctitis) for a year and had been on various steroid treatments and mesalazine - I then became a member of this wonderful wegs club and eventually ended up on azathioprine which seemed to sort everything. Co-incidentally I had a flare of my IBD a year ago and up until last week still had not got it completely under control, however my gastro dr informed me that there was not a connection between wegs and the bowel? It just seems too much of a co-incidence that history seemed to repeat itself in exactly the same format?

Do you think my IBD rumbling away could have been an early indicator?

[Rose]

Hi Jules

i was also told my a professor of Gastroenterology that Wegs does not affect the bowel. This was in response to my query when I asked him if it could affect the bowel as I had finally got relief from bowel problems (told it was IBS during suffering for 17 years) when I was diagnosed and started treatment for Wegs.

At this point I should say it was only when the Wegs affected my lungs, kidney sinuses etc that I was finally diagnosed. I changed my Gastroenterologist the next time I needed the services of one. He listened to my story and as I was to have a colonoscopy he decided to request a special test on the bowel biopsy for vasculitis and it returned mildly positive.......that was 2 years after commencing treatment for Wegs.

Like you, the reason I asked about the possibility of Wegs affecting my bowel was that I also thought it was too much of a coincidence to finally get major relief from my bowel problems when I started treatment for Wegs in my lungs,kidneys etc. This they could see on.the X-rays and blood work but during those 17 years when I was complaining of terrible bowel discomfort and pain it was only my symptoms they had to go on. I was never diagnosed with IBD and All tests came back negative. I think now it was inflammation of the small blood vessels in my bowel that gave rise to my symptoms. The pain used to move around a lot and I remember when I mentioned this to my doctors they looked at me as if I was losing it. I found out after diagnosis that migrating pain is typical of Wegs

If you google Wegs and bowel involvement, you will find documented cases of Wegs affecting the bowel. Wegs is rare and bowel involvement is very rare in people diagnosed with Wegs. My Gastroenterologist found cases on the internet on sites only for doctors's use.. There are a few Information sites for the general public where they do mention bowel involvement but they are few and far between.

It must also be pointed out though that immune-suppressants are also used in the treatment of I B D. They don't know the cause of IBD but it is an inflammatory condition so maybe be there is a connection with Wegs

Rose

[Jules]

Thanks Rose, that is really interesting to hear and sounds very familiar with regard to symptoms being relieved when originally commencing treatment for sinus, lung and kidney involvement! I shall certainly think about seeking an opinion from another gastroenterologist. I hope you are feeling a little better now?

Best wishes
Julie

[Alysia]

Hi Jules

Ditto to what Rose said.

Wg can affect any organ. Bowel for sure. I have few friends on facebook, at least 5 weggies with bowel involvement. Its rare but it occures.

I would even ask if your IBD is not actualy WG in the GI system. When symptoms are coming together, like when I have red eyes, joints pains, coughing AND diarrhea, I know that the diarrhea is wg related.

C-anca positive can be an indication to WG activity but also to Crohns' disease.

Are you on pred ? Is it helpful for your IBD symptoms ? Btw, My gastro dr. Said that when pred is helpful it might be an indication of IBD and to rule out IBS.

Sending prayers. Please update us.

[Alysia]

Update: The formula worked for me only 3 days. At the fourth and fifth day I got diarrhea and still didnt understand why... at the sixth day I had crazy watery diarrhea all day long. So I understood that it was the formula. Felt like being poissened. The day after I didnt touch the formula. My stomach was quiet.

So I am back to square one.. no idea how to get the vitamines that I need since I cant eat fruits and veggies and cant bear multi vitamins pills. Any advices are more then welcomed.

[Jules]

Hi Alyssa - thanks for tht info . . . this place comes up trumps every time I have a question. . . It's so good to have you all out there with so much advice on hand! :thumbsup:

I've been put back on 30mg of pred and azathioprine for sinuses and positive ANCA and am assuming the bowel symptoms will automatically improve, as they did last time round. Appointment with rheumatologist next week, so I'm sure more info will follow that!

How are you doing?

[Alysia]

I bought the Rifaximine on my own. With hope that it will do what it should. It made things worse. 3 hours after I took the first pill I ran to the toilet. It worked like aggresive laxative. I also had dizziness and shortness of breath. Looked white. So no more.

Back to my good old friend pred. Nothing like 30mg pred to make you feel as good as new. I guess I should stick with my pred.

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