Systemic lupus and now possibly IBD

hi all,

i am new to this forum and i'm just trying to figure out if this sounds like crohn's or UC. i am in my late 20s and have been diagnosed with systemic lupus for several years. i also have gastroparesis as a complication of my lupus, so i have some GI symptoms that are likely related to that (such as nausea, bloating, pain, fullness). i have had 1 colonoscopy and 1 sigmoidoscopy in the past due to some bouts with diarrhea, but both were fine.

my GI doctor wants to do a colonoscopy when i have an upcoming GI procedure because i've had bleeding and blood in my stool for several months now and he is concerned about IBD. the blood is bright, so i imagine it is coming from lower down. it can range from being a little bit on the toilet paper to being very noticeable in the stool (along with mucus sometimes), or turning the toilet water very dark red. i will have bleeding every single day for weeks at a time and then it will sometimes let up for a little while before returning for several weeks again.

i believe i have a fissure or ulceration just inside the sphincter, which i have never had or noticed before -- it can only be seen while bearing down, but it definitely looks like some sort of ulcer/sore. i didn't used to have pain with bowel movements, but i have over the past few weeks especially (i imagine due to the ulcer thing). i do not struggle with constipation or hard stools, despite having gastroparesis. i usually have bowel movements 2-5 times per day, but always at LEAST once and usually at least three times. sometimes i will have to use the restroom 2-3 times within a 1-2 hour range, so i'm not sure if my colon is not fully emptying or what. stool ranges from what i'd consider normal (well formed, but not hard) to watery, although normal is in the loose range where it isn't really diarrhea, but isn't well formed either.

does this sound like IBD at all? i am a little concerned only because i am already on azathioprine for my lupus (in addition to a monthly infusion and medrol/steroids), but this is still getting to be very bothersome.

other questions are -- if the colonoscopy is fine, will i need to push for any other tests or does that make it unlikely to be IBD? and if it ends up being IBD, are there other treatments besides azathioprine, remicade, and humira? i believe i am not supposed to use remicade or humira because of drug-induced lupus risks and the fact that they could make my lupus worse....not to mention that i'm already on a different biologic already. so i guess i'm a little concerned as far as treatment options. is there anything i can do in the meantime to help with the possible fissure? i feel like it is never going to heal because i just keep having bm's, so it just keeps getting irritated.


thanks for the help!


(side note: gall bladder and appendix have been removed years ago. no problems with gall bladder-related pains since removal except for a supposed biliary spasm this year. there are some additional symptoms i have like mouth sores, difficulty swallowing, etc., but i don't know if they're due to preexisting conditions rather than this.)

Hello and welcome to the forum.

What you are experiencing can happen with an IBD, if the colonoscopy is clear then the docs could always to a pill cam to check the rest of the GI tract where the scope can not reach. Out of interest what dosage of the Aza are you on? What biologic are you being given? Have you noticed any difference in tummy symptoms with changes in what you eat? We do have a treatment forum that might be worth looking at to see other options in this area: http://www.crohnsforum.com/forumdisplay.php?f=16.

Please keep us updated on how you get on.

AB
xx

Hi there and welcome

Your symptoms could indeed potentially fit with some form of IBD but hopefully it's something less serious that can be cured.

Like Angrybird, I'm curious what dose of azathioprine you're on.

Also, what are/were your symptoms that led to a lupus diagnosis?

All my best to you.

hi angrybird and david,

i take 100mg of aza per day so far (i switched from cellcept to aza not too long ago, so i am not on the max of aza yet and there is room to move up). the biologic i am on is called benlysta...it is only used for lupus rather than how some of the biologics are used for a variety of conditions.

david, for my lupus diagnosis, i had problems with rashes (malar rash amongst others), pleurisy, pericarditis, pleural effusions, pericardial effusions, joint pain, photosensitivity, seizures, fatigue, fevers, mouth ulcers, positive ANA, low white blood cells and platelets, etc.


thanks!

Hi Taiga,

If you recently switched to azathioprine recently, it may not be in your system enough yet to be making a difference. It usually takes 3+ months in fact. They can also do something called a thiopurine metabolite test to see if you are at therapeutic levels but that would likely be down the line more.

Thanks for sharing your lupus symptoms, I appreciate it.

Hi my daughter age 13 years has had joint and skin problems for years rashes, lumps
Faecal caliproctine test done twice MARCH and SEPT level 227
ANA done lots of times 1.640
they have done scope up and down all okay
Bowel MRI all okay
Was wondering if possible LUPUS could raise faecal caliproctine test?
DO ANYONE KNOW THIS ANSWER?

Yes, lupus can lead to increased fecal calprotectin. Sepsis and rheumatoid arthritis can as well.

thanks David