Any thoughts...sound familiar?

[mommyoftwo]

Hi all...I thought I would type out my story here to see if anyone can relate. I'm a 36 year old woman that also has SLE (Lupus). Last March (2011), I started with daily bouts of diarrhea. This lead me to a GI doctor that did a colonscopy, blood work, stool samples and a small bowel series. Those revealed some inflammation on the colonoscopy, a low antibody on the bloodwork, a positive fecal fat test and malrotation on the small bowel series. I was told these were not important and that it was IBS. I was given Levbid (which did not work), then Donnatol (which also didn't work) and told to take Lomotil every day to control the diarrhea. By November, I started to loose weight and also have bloody diarrhea around my period. By February, I was really loosing weight, in a lot of pain, nauseas, and could hardly eat so I decided to see another GI doctor. I have just started seeing her but I have lost 40-45 pounds, can hardly eat, have bald spots on my head and am so exhausted from this whole ordeal.

Does any of this sound familiar to any of you? I just went for a Barium Enema today but I don't expect that it revealed anything new.

 

[Jennifer]

Ugh, the barium enema. I really hated that test but I was kid so that could be why but I can't imagine it being any better now that I'm older. Sorry you had to have that test done. Its definitely the worst test I've ever had (since I get knocked out for the scopes).

Doesn't sound like IBS, especially the bleeding, weight loss and I don't even think inflammation is a symptom of IBS. "In IBS, the structure of the bowel is not abnormal." http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001292/

Pain, nausea and bald spots could also be from the Lupus. You may be getting a double whammy if you do have some form of IBD.

Glad you're seeing a new GI. Hope they take you seriously so you can start feeling better!

 

[mommyoftwo]

Thanks...The Barium Enema was MISERABLE!!! I would have much prefered to be knocked out and I'm annoyed because I don't think it will show anything at all. The pain is all in my stomach so I don't think it is my Lupus but the hair loss could be. I also had a pelvic ultrasound down but they couldn't find one of my ovaries because the bowels were blocking it completely.
Thanks

 

[Jennifer]

Hopefully it shows something. I can't remember if mine did or not. All I remember about that test was being told, "you're going to feel some discomfort." Sir, that is NOT how I would describe it!

 

[StarGirrrrl]

I know Lupus can cause IBS like bowel issues, but you've several red-flag symptoms there which indicate it may be something more
Perhaps a new GI might be an idea?

 

[mommyoftwo]

I actually just switched GI's very recently and she is looking into a wide range of things. She feels that is some sort of auto-immune disease based on the fact that I have Lupus but isn't sure what. She doesn't think it is IBS due to the symptoms.

 

[Catherine]

At least your gi saying not ibs.

Wishing you all the best.

 

[mommyoftwo]

The other GI doc that I was seeing kept saying it was IBS and wouldn't listen to anything I said so that is why I switched. My mom had IBS so it made sense in the beginning when I just had the diarrhea but with the extreme weight loss, bleeding and now severe pain/nausea and inability to eat it seems unlikely to me that it could be IBS. He just kept saying it was though, and maybe it is, but the meds he was giving me weren't helping and 1 was making the pain worse so I needed to switch to another doctor. I really don't care what they call it, as long as they fix it!

 

[Jennifer]

Bleeding and inflammation don't occur with IBS so there's something else going on even if you do have IBS on top of it. Hope you get a diagnosis soon!

 

[Catherine]

My 16 year old was dx with ibs in August of last year.

She hadsevere weightloss and pain in November, December, January. Losted 12 kg in all.

She was asked at the end of December, whether she had been trying to loss weight.

She was dx with crohns in end January 2012.

I have ibs myself but when I read your story you sound more like Sarah.

 

[mommyoftwo]

I really thought it was IBS in the beginning but now I doubt it with the other things that have come up. The weight loss is scary since it is pretty extreme now at this point and I don't think that is common with IBS, but I could be wrong.

 

[Catherine]

Hopefully your ultrasound has shown something. Make sure you get a copy of the report, Sarah had the same type of ultrasound in August of last year which we were told was clear. After are our new GP requested a copy of the ultrasound in December did we find out the the ultrasound was not clear at all.

Keep looking for answers.