Does anyone know if and how this disease affects your bowel? Katrina x

Hi Katrina, What I do know is that Lupus can affects almost all your body (most important functions - like lung, heart, bowel and many others). Best thing to do know is go to a doctor and perform several exams to investigate. Regards, Jayme

Hi Jayme I see so many consultants they just seem to pass the buck. They what to do more tests but because my heart and lungs are so rubbish I have to see a anaethetist first. None of them seem to know how my illness affects the bowel. I'm sure it must as you say it affects everything else. Many thanks Katrina x

Hi Katrina, Where do you live (USA, Canada)? Maybe you must go directly to a special center in other city to see in details how LUPUS is affecting your health.

I'm on the Isle of Wight in England so this has been a bit of a problems. I have overlap syndrome a combination of SLE, Scleroderma and Antisythetase sydrome. Until now it has affected mainly my heart, lungs and blood, things that they could'nt ignore. However my other symptoms they don't seem to take to much interest in just saying that they don't know anything much about my illness. I will ask for a second opinion soon if I don't get any joy as the stomach pain is getting unbearable. Katrina x

Hi Katrina, I find that I have periods when I go from constipation to diarrhoea and back again. It bothers me for a couple of months and then goes away for several months. Then when I have forgotten all about it, it comes back again. When I have abdominal pain my family doctor gives me a prescription (I forget the name) which helps somewhat. My Lupus doctors have never said anything about it. Jacquie

Hi Jacquie I've always been like that since I was a child however it hasn't gone away and is becoming much worse. Not opening my bowels for weeks and then not having any control of my bowels when I have to take copious amounts of laxatives. The abdominal pain is becoming quite unbearable. It may be something else not connected to the lupus so they have agreed to me having a general anaesthetic to investigate. The problem is lupus does tend to get the blame for everything. I'll let you know how I get on. Katrina x

Hi Katrina Something that can cause abdominal pain (especially from when you are young and getting worse as you get older) is an allergy to gluten. i.e. wheat and other "flours" If you have it bad it is called Celiac disease but some people are not allergic just sensitive to it. You can't eat anything with wheat, rye, barley, oats(unless they are marked gluten free) More and more people are discovering that they have a problem with gluten and more places are carrying gluten free products. e.g. rice or bean flour breads, pasta etc. I get a lot at health food stores but regular grocery stores are carrying some things now too. There has a big increase in the last two years. Even many restaurants have gluten free items e.g. pizza & pasta/ I found a book in the library by a young woman who sounded like what you say you are going through. Her book tells how to go about becoming gluten free. It is amazing how many things have wheat in them. e.g. gum, ketchup, popsicles, At my doctor's suggestion, I have gone without gluten for two years now and it has been a big help to me to control my steroid induced diabetes with no medicines. Jacquie

Hi Jacquie I think you might be right. Wheat based products do tend to make things worse. I once cut all processed food out of my diet for about a month, it was much like the atkins diet, I felt fabulous. I then started to introduce new things starting with wheat.Tto my suprise this made no difference however when I introduced milk I was immediately ill. I saw a specialist who said I was lactose intolerent I now try to avoid lactose which is difficult when you are on so much medication. I still think there is a link to wheat though i'll give it another go and see if it helps. Katrina x