Bowel Flare

[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