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Old 05-29-2004, 05:08 PM   #1
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Irritable Bowel/Ulcerative Colitis ? Lupus Related

Hi,

I am wondering how many of you who have Lupus or know you have Lupus and your doctor just won't diagnose you have suffered with bowel issues. I had an attack of active ulcerative colitis- which now they say was probably due to vasculitis of the colon- once the ulcers healed I have been left with a horrible problem with irritable bowel. The last 2 years my symptoms of the Lupus have been active and my bowel in kind has been almost unbearable. I have attacks at least once a day if not more. Does any of this sound familiar?? Is there a link someone knows about. It seems to me that the bowel synptoms started after the joint symptoms, rash, sun issues, fatigue and Sjogrens, but never resolved even though the active ulcers did? Has anyone taken Zelnorm- with good results. Just wondering and trying to tie all my ailments together if possible. I appreciate your feedback.
Thanks!

 
Old 05-29-2004, 11:38 PM   #2
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

Ulcerative Colitis is thought to be an autoimmune disease. Often UC people have postive
ANA's.

I'm still waiting for a definate SLE diagnosis and yes, I have IBS. At it's worst I was having attacks up to 16 times a day. Currently it's just a few times a day so I'm thankful.

My best friend has UC, and has had it for over 20 yrs. She does not have SLE. She is in a remission right now, she's on some kind of chemotherapy drugs that have been a really big help.

 
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Old 05-30-2004, 02:43 AM   #3
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

I don't have ulcerative colitis, but I do have IBS. (Endometriosis is growing on my colon....) My OBGYN told me to take Citrucel every day and it would level out the bowel activity. Sometimes absolutely nothing would move, no matter I did to get it going, and other times, the activity was relentless and non-stop. The Citrucel really did help get me back on an even keel. It works by adding bulk when you need it and absorbing excess water when you don't.

 
Old 05-30-2004, 03:16 PM   #4
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

Beachbound,

I saw an interesting article a few weeks back on people "presenting" with lupus when they first have an apparent bowel obstruction or problems that look like ulcerative colitis but aren't (after proper testing, of course).

I don't know that anyone has PROVEN the correlation in large numbers of lupus patients, but there's apparently enough of this sort of thing seen that this rheumatology journal had a specific article on SLE & it.

My own guess is that YES, the horrible IBS bouts feel related to me. I've done the IBS thing for over 25 years now. It's much less frquent now that I take Plaquenil, avoid sun, am over 50, etc. I have no idea what factors have played a role in its lessening. I still get bouts, though, but not as often or lasting as long.

What you write is very familiar to me. I watch what I eat, too, as I know some foods drive me over the brink. It's more than just foods, of course, but I feel I help my odds a bit by avoiding foods that are known personal triggers.

Sympathetically, Vee

 
Old 06-01-2004, 10:14 PM   #5
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

I am not yet diagnosed with anything for sure but my ANA was positive and so was my fecal occult for blood in my stool. I am awaiting more tests. I do know that my flares seem to coincide, my bowel problems always seem to be present but get really bad around the same times my other problems (which seem like lupus symptoms) do. I think if I do have lupus that it's been coming for a long time but interestingly enough it was my bowel problems that sent me to the doctor in the first place. I put the lupus symptoms off thinking it was just "becoming a mom". I don't think that anymore. I hope you find your answers. Take care

 
Old 06-02-2004, 11:42 AM   #6
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

I am also suffering with IBS and have been initially diagnosed with Lupus. I am currently taking a daily dose of levsinex and it has helped a lot with the diarrhea and constipation. I also read that same article and think that the link does exist between the two

 
Old 06-02-2004, 11:42 AM   #7
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

I am also suffering with IBS and have been initially diagnosed with Lupus. I am currently taking a daily dose of levsinex and it has helped a lot with the diarrhea and constipation. I also read that same article and think that the link does exist between the two.

 
Old 06-02-2004, 12:50 PM   #8
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

Caden/Logan's mom,

I was wondering when you developed your bowel and joint symptoms. Mine all started post partum after early pre-eclampsia. I began with arthritis and fatigue- then about 3 years later developed the bowel issues and they have never left nor has my arthritis. That was 9 years ago. I take Levisin SL and it does help for the acute attacks, but I have to use Donnatal, if I have repeated attacks in one day. There has to be a connection. A doctor told me that my episode of ulcerative colitis (visible ulcers in my colon) could be caused from vasculitis. but can irritable bowel be linked to vasculitis? I am seeing a specialist at a large medical center next month, so I will certainly try to get as much info as possible. I will update you.
Beachbound

 
Old 06-07-2004, 11:55 PM   #9
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

My joint pain started with my periods several years ago and was what I thought was endometriosis. I had surgery and they found no endometriosis however my symptoms (there were several) persisted up until the time I got married. I saw a doctor again who recommended maybe we try to have babies and we did thinking it would take a while to get pregnant, it took two weeks (not usual of endometriosis). My bowel problems began in pregnancy not diarrhea but chronic severe constipation which is a normal part of pregnancy right?? Well I used to sit and cry on the toilet because I was so "full" and it was like my bowels weren't moving at all. My constipation was definetely not normal and didn't improve no matter what I did, still won't. It was not normal but I thought it was. It was in my postpartum period that the intermittent bouts of diarrhea began but constipation has always been and still is my primary bowel problem. After my second baby my bowels problems have just escalated plus I began to experience chronic yeast infections which still plague me and are resistant to what used to treat them. Then once I started having periods again ( I had two babies 16 months apart so I was pregnant/nursing and having no periods for a long time), the joint pain and severe fatigue would occur but I noticed a link because when my bowel problem would flare I also had this pain/fatigue syndrome going on as well. Fatigue has been a major factor in my life for the past 18 months, since the birth of my last baby but I put it off for a long time as just being a new mom and chasing kids, it's now become a daily challenge to my living my life like I want to. After now being diagnosed with lupus (still testing but have met four criteria including positive ANA test) my doctor explained to me that it is possible that lupus could be causing my bowel inflammation and may have possibly been what was causing my period problems long ago. In both my pregnancies I also had pre eclampsia which he said can be related to lupus. It was interesting to talk with my doctor because I can see a connection between so many things in my medical history in the past five-seven years which could have actually been lupus related. I am also having a colonoscopy on the 25th to see if I have ulcerative colitis or what, I am nervous for the test but anxious to find the results. Thank you for your info, sorry for the novel! Take care.

Last edited by UT_mom; 06-07-2004 at 11:59 PM. Reason: typo

 
Old 06-08-2004, 05:50 AM   #10
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

My severe IBS started half a lifetime ago, fifteen years before a full-blown lupus rash; and it was so bad that I was hospitalized several times just for it. It was not pregnancy-related. Now I suspect vasculitis---but had never even heard of the word at that time.

My mom suffered, too, and my sister does, to a lesser degree.

Caden/Logan_mom, like you, I look back at my long & varied medical history and wonder how much may have been lupus... Just no way to tell for sure, I guess. I had several bouts of high fevers & convulsions as a 4-year old, and spent weeks in children's hospitals way back then. Bullous rashes in the 4th grade. Bizarro periods & prolonged arthritic pain with fever and strange WBC as a teen. Something new every decade, in other words.

Anyway, good luck with the colonoscopy. I think they pretty much knock you out today, which may be preferable to the good old days. No one wants this test---but I found worrying about it was far worse than the test itself---and I was fully awake! If I can do it, anyone can, is my theory.

Hang in there everyone. Vee

 
Old 06-08-2004, 08:37 PM   #11
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

Thanks vee! I know i asked the nurse and she said that even thought they don't knock you totally out that nobody remembers anything so I thought, good enough for me. I think to myself when I read these posts no wonder they can't find a cure or aren't sure why lupus happens because everybody's symptoms, history, and experience are so varied. Good luck to all! Have a happy day!

 
Old 06-11-2004, 12:50 AM   #12
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

By the way I will say that before I even thought about lupus and was just concentrating on my bowel problems, my flares of bowel trouble and then the lupus symptoms I was trying not to pay attention to always hit at the same time or within very close proximity to one another.

 
Old 06-13-2004, 08:36 PM   #13
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

Hi, I'm new here, but have had what I call a spastic colon ever since the birth of my first child, who is now 15. I found out by accident that aspirin completely eliminates the symptoms. It doesn't cure it, but I haven't had that seizing pain in the rectum/sigmoid for 5 years now (with subsequent constipation, of course). I take one baby aspirin a day, and if I eat a lot of salad or am under a lot of stress, may take two for a couple days. If I forget to take it for several days, I can feel it coming back on, so I know it's still lurking there.

Don't know if that would work for anyone else...my MD's had never heard of such a thing, but it's been a lifesaver for me, a very simple solution without the nasty side effects of those other meds.

Oh, also forgot to say, I started out taking several baby ASA a day, like 3 in the morning and 2 at night, and then weaned down to what now controls it. I'm not sure if that higher dosage was needed to get it under control at the beginning, and I'm not about to go back and experiment to find out!

Last edited by diinin; 06-13-2004 at 08:38 PM.

 
Old 06-14-2004, 07:30 AM   #14
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

Diane,

It's Vee again (I posted to you in another thread). I also had "spastic colon" for over 1/2 my life, enough to be hospitalized for it alone several times. Full tests (colonoscopies, etc). always negative for ulcerative colitis, Crohn's, etc. Bouts were accompanied by weight loss, elevated ESR, huge headaches, low-grade fever, pain in joints & along long bones (esp. shins), etc.

Then it was concluded that problem was "only" fibromyalgia. But then came the rashes. Then, finally, Dx of SCLE, cutaneous vasculitis (and watched for anything worse), and also being watched for APS. I'm on Plaqeunil now.

Don't you just HATE the GI stuff? Talk about a show-stopper! You said you are small-built. So am I, and I'd lose add'l weight from bad bouts. I ended up with early menopause, osteoporosis, etc.

Hmmm. One really wonders about the possibility of some single, overall condition being the underlying cause. I don't know that there *has* to be a single cause, by the way. FYI, I still have minor bouts but not nearly so bad as before. Hang in there! Vee P.S. There are others on this Board who have discussed persistent IBS-type problems.

 
Old 06-14-2004, 08:52 AM   #15
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Re: Irritable Bowel/Ulcerative Colitis ? Lupus Related

Vee--would you believe that I have osteoporosis too, dx'd at age 38?? I've dismissed it as unrelated to any of my lupus-like symptoms of the past year or two, because I'm almost 42 now and I think you have to have lupus for several years for it to cause osteoporosis. Even my earliest sx, the malar rash (if it is that) isn't more than 2 years old, I don't think. I've been on Actonel for almost 4 years now, and I'd been to an MD who was trying to find a cause for such premature bone loss, and never found one. She thought it surely had to be parathyroid related, but the tests just never showed that.

It wasn't for lack of calcium. I love milk, used to drink it like most kids drink pop when I was a younger.

Last edited by diinin; 06-14-2004 at 10:57 AM.

 
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