IBS or could this be something like Crohn's

[mommyoftwo]

Hi...I'm a 35 year old woman who was diagnosed with IBS last May but I have been getting steadily worse and I would love your opinions. This may be long so I hope you don't mind. :boring: I have Lupus so am on a variety of medications but have been on them for years. In March of 2011, I developed daily diarrhea, without fail I was going 3-7 times a day. I had a colonoscopy and some bloodwork performed which was relatively normal but showed "chronic mucosal injury", my fecal fat was positive and my IgA was very low. They diagnosed me with IBS. About 2 months later they did an endoscopy which just showed a hiatal hernia. I was put on levbid which did nothing and then donatol which still doesn't do anything. I was then told to take Lomotil as needed which is every 4 hours to keep the diarrhea at bay. I don't like taking it that often because it makes me feel very crampy. I was OK with this since besides being in the bathroom I felt relatively fine. However, beginning in November, I started noticing blood in the diarrhea the day before I began menstruating and also started having a very hard time eating. It is progressively getting worse. I am at the point now, I can hardly eat and when I do eat, I feel lousy or have stomach pains or have diarrhea. I also have gone from a size 10 to a size 4 since the end of November without trying to loose weight. I've tried changing my diet to see if certain foods make a difference and so far nothing helps.
I mentioned that when I increase the prednisone for my Lupus, my stomach feels better and my GI doctor says "that's interesting" but nothing else. I don't really have any confidence because I feel like he isn't addressing my concerns that I am getting worse so I have an appointment at Mount Sinai in NYC for April 11th but I don't know if I"m wasting everyone's time if this is something as simple as IBS.
Thanks to anyone that has read this far and if anyone has any suggestions, I'm open to them.

 

[Rebecca85]

You have lupus? I wonder if that could be the cause of your digestive troubles. One of our members, Allieinwonder, was undiagnosed for years, her doctors were looking for Crohn's. But she ended up with a diagnosis of Mixed Connective Tissue Disorder including Lupus.

You mentioned increasing the pred for lupus. Are you on any maintenance meds at the moment? If not, maybe you ought to be, get the lupus under control and see if your bowels settle too.

Here's some information about SLE and the digestive system.

 

[Catherine]

Welcome

My daughter was dx ibs in July 2011, following severe weight (12 kg in 3 months) and tireness, scopies were done in late January 2012 was dx with Crohn's.

Your symptoms do not should like ibs to me.

 

[mommyoftwo]

I've mentioned this to my rheumatologist and was told that it doesn't sound like it is my Lupus. I am on maintenance meds for lupus and have had it for 10 years and my "normal" lupus symptoms seem good. When my lupus symptoms have flared, my stomach has stayed the same, aside from when we increased the prednisone.

 

[GFinDC]

Did they take biopsy samples during the endoscopy? And do a celiac disease blood antibody test? They need to take 5 or more biopsy samples to check for celiac. If your total IgA is low you won't "pass" the IgA tests, regardless of how sick you are.

Some people never pass the celiac antibody tests but they still have celiac. And some people have NCGI, non-celiac gluten intolerance, which there are currently no tests for at all. Aayway, just a thought, as the symptoms sound like a possible match.

This link has a list of associated conditions with celiac. Lupus is one of them.

http://www.bidmc.org/CentersandDepartments/Departments/DigestiveDiseaseCenter/CeliacCenter/FAQ/AssociatedConditions.aspx

 

[mommyoftwo]

They took 1 sample for a biopsy. They haven't done any additional blood testing.

Also, has anyone lost hair as a result? I woke up the other day with a bald patch that is larger than a quarter.:sign0085:

 

[exit4]

"blood in the diarrhea" sounds like alarm to me! Mount Sinai in NYC is a great idea for a second opinion.

 

[allieinwonder]

I know I'm totally late in the game on this one, but I wanted to add my two cents in!

As Rebecca said, I was at first diagnosed with severe IBS, and for years all my doctors were looking heavily for Crohn's. I have a list of symptoms pages long, but I had all the classic Crohn's symptoms: blood and mucus in my stool, diarrhea 10+ times a day, severe abdominal pain, mouth ulcers, joint pain and swelling, etc. I had every test known to test for crohns....colonoscopy, endoscopy, small bowel follow through, many many blood tests, and finally a pill cam.

Once the pill cam came back normal I decided to go a different route with my search with what was wrong, because I knew it was not just IBS and I wanted the suffering to stop. I went to a rheumy and he tested my ANA, and it turned out positive. After further research, it was deemed that my inflammation isn't the inner layers of my intestine, but the outer layers and connective tissue. This can cause IBS to occur, and in my case it looked just like Crohn's. The diagnosis of Mixed Connective Tissue Disease was given after I responded very well to both prednisone (in a low dose) and plaquenil.

Lupus can attack any organ in the body, including the intestines. Lupus can also cause IBS like symptoms when the inflammation interferes with the intestines like it does with me.

I hope since this thread was from a month ago that you have found some answers!

 

[marjory2020]

Gosh, you really have the magic trifecta of conditions, don't you? The key difference between IBS and IBD is that IBD is structural, while IBS is more like a hypersensitivity -- if we have to boil it down to simplicity -- http://bit.ly/IMGPOh. While the only way to be diagnosed with IBD is through tests, tests, tests, and...did I forget something?...oh yes, MORE tests, for right now, your symptoms are getting worse. Just really watch your food intake, what foods affect your intestines most, and hang tough until you get your doc's attention!

 

[allieinwonder]

marjory is right...IBS is diagnosed when there is no proof of anything else. But that doesn't mean nothing is going on with your body. Just come take a look at the undiagnosed club and you will see. My inflammation is in such a weird place that CT scans and other tests can't see it...it takes a doctor with lots of faith to give me my meds...which is why I have a diagnosis! I got lucky I guess.

I forgot to ask...MommyofTwo, what meds are you on for your lupus? Lupus and Crohn's are both AI diseases, and some medications that are used to treat actually over lap, especially prednisone. If you are on prednisone, if you had crohn's it should have helped.

 

[mommyoftwo]

Thanks so much for your reply. I am on prednisone and have been for about 6 years now and that is what made my new GI question some things. For awhile I was on a much higher dose but last March (when everything got worse) I reduced to my current dose of 5mg. A few times this past year I have had to go up to 20mg due to my Lupus and at those doses my stomach has been better. When I mentioned this to my old GI doc, he said it didn't mean anything. The new GI doc that I switched to, feels that this is something important.
Besides prednisone, I am also on plaquenil, Cellcept, colchicine, topamax, toprol and mobic.
I have kept a food diary and so far the only thing that I notice that is really BAD for me is salads...that is very dangerous for me
Thanks again.

 

[allieinwonder]

That is interesting! I know with my MCTD I need a lot less pred than a crohn's patient to get my symptoms down (10mg will pretty much do it). I'm on 5mg right now too, and they don't plan on taking me off of it at all, but because they didn't start with a higher dose this flare isn't being helped as much as I would like.

The food diary is a great idea. I have a ton of trigger foods, just like crohn's would. Anything high fiber, whole grain, and any fresh fruits and veggies tear me up! My inflammation gets worse, the spot that gets inflammed becomes warm to the touch, and the diarrhea gets much worse. Because the inflammation causes my intestine in that area to be smaller, it can't handle or process that stuff very well.

I honestly don't know if you can have crohn's and lupus at the same time...lupus is your immune system attacking your entire body, and crohn's is your immune system just attacking your intestines. But don't quote me, I'm obviously not a doctor. Either way I hope they figure it out and help you feel better! Having Lupus with these digestive symptoms really sucks!

 

[StarGirrrrl]

I did some research awhile ago, and think I remember reading that while having IBD and Lupus is very very rare, it's not impossible.