Bowel involvement (this really is a $#!t topic)

[gilders]

I have been on a fairly long investigative journey for my bowel problems. Thankfully, a sigmoidoscopy showed good results and ruled out anything of major concern such as cancer. But I have hit a wall with the specialist who has now discharged me and arranged an appointment with a nurse.
My stools are very soft, but not watery. They are what I would describe as sludgey or like peanut butter when it is warm and a soft and a bit runny. I struggle to empty my bowels and have to spend about 20 mins on the toilet, with frequent wiping that eventually leads to bleeding.
As I open my bowels fairly regularly and the stools are not water or rock hard, the specialist has dismissed my problem. But although not life threatening, it is lifestyle changing. Such as I can't leave the house until I've emptied my bowels (which doesn't happen on command).

The reason I have brought this topic up is because I'm wondering if it's connected to Wegener's and perhaps there is something specific I could ask the nurse to check.

So, judging by any replies, I should be able to see if bowel problems are common or not with W.G./vasculitis.

[andrew]

Yep that's a s**t topic alright! No clue about the Wegeners connection I'm afraid but I'm guessing you've gone down the diet path and checked for anything that while maybe not CAUSING it could be making it worse? And maybe you need a new specialist? That's definitely not normal and needs to be fixed.

[vdub]

I haven't heard of anything like that in connection with wegs.

From what you describe, I would guess a parasite of some sort. Have you been to any third world countries within the last couple years or been around any unsanitary conditions such as a slaughter house or sewage treatment facility? Or, do you have cats or dogs that stay in the house with you? Particularly cats, which for some reason, people think can be let out of the house to roam on their own while disturbing the neighbors.

[Alysia]

Hi gilders.

I am sorry for your agony. I know it too well....

First, like vdub wrote above it is worth giving stool sample to check for parasites or germs like shigela or salmonella.

Vdub, I keep my cats at home only, and give them vaccins against colon parasites every 4 months. So cats at home can be purrfectly ok. (Cleaning the litter box with gloves, of course).

Wg in the colon is not as rare as it might seem. I have it and I know few other weggies who have it.

Sygmo is not enough to rule it out.
I was too weak to endure colonscopy.
I did calprotectin test Calprotectin in stool

When it is wg in the colon, the test will turn out highly positive. Mine was. Wg in the colon is very similar to Crohn's diseases according to my gastro dr. He said that there can be very similar granulomas in the colon. And the treatment is much the same.

The main question that you need to check is if you have an inflamation in the colon. In wg there is. I am running to the toilet 3-4 or even 6-7 times a day. Also lots of pains in the stomach. I cant eat many foods. Tomato is a disaster.

Try to make a diary which foods make it better/ worse. Also try not to eat foods with perservatives, too oily or fat, not in clean places etc.

Keeping you in my prayers. Please let us know how you are doing.

[Alysia]

P.s. on high pred my stomach is as good as new.

[gilders]

Thanks for all the replies and advice. My bowel problems began over 5 years ago so would presume it can't be parasites after such a long time? I've also ruled out diet and medication. My symptoms first started when I was lucky enough to be on only a few meds (no actual meds for WG) as I'd been in remission for a long time, that's why I rule out meds causing the problems. I have tried different diets including high fibre (both from food and supplements) and there's no change.

I will have to try and get the Calprotectin done.

I went to a pre-dialysis seminar today and have decided to have peritoneal dialysis. But for the exchange (process of draining and filling 2000ml in to your abdomen) to work safely you need good bowels. Basically, if you're bunged up with faeces there's not enough room to comfortably fit 200ml of dialyase in you. So what has been an inconvenience for many years, has become a more urgent problem.