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Desperately seeking help to figure out what's wrong with me...(GI related- help needed!)
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little_blue_butterfly posted:
Hi my name is Alyssa and I am now 29.
I used to come to these boards approx 10 yrs ago when I was first sick. I got sick in Nov 2001. I was diagnosed in Oct 2003 100% with severe SLE with several organs involved including pulmonary, cardiac, CNS, minor kidney, joints, and 10 of the 11 criteria for diagnosis. I also have been diagnosed with osteoporosis from the prednisone as well as Cushings', Sjogren's, Raynauds', Fibromyalgia and a bunch of other "fun" illnesses. My rheumatologist calls it Mixed Connective Tissue Disease. For about 2.5 years now, I have been struggling with stomach "issues". I was diagnosed with gatroparesis about 2 yrs ago however while in the hospital this last time (I was in 3 weeks until Dec 23) I went through a TON of testing including a gastric emptying study. The tests almost all came back normal for stomach issues. I've been hospitalized 4 times this year alone for my stomach as well as several other times since I got sick with the gastro stuff (well also for the Lupus too but I'm concerned about the gastro stuff for now 0.o). My problem is SEVERE vomiting and nausea. It kind of flares up but while in hospital, on all the meds, I don't vomit but do have nausea. Once I get home from the hospital it only seems to take a few days before I start to vomit again. The last night before I went to the ER, I vomiting close to 100 times in 1 evening. I desperately am trying to figure out what the heck is wrong with me. I am losing weight (which by itself would be fine since I did gain a bunch from the prednisone but it is a significant symptom), low potassium, dehydration as a side effect, low blood pressure, abdominal pain, some diarrhea (but not a lot) chronic, worsening fatigue, muscle weakness, dizziness, loss of appetite, etc. When I am in a vomiting "flare", nothing stays down- meds, water, apple juice, ginger ale, rice, etc... I've had ct scans of my brain and abdomen, ultrasound, barium studies (like swallowing, tilt table, etc) the only one I have not had so far is the manometry test- that I know of anyways... I am very desperate for ideas about what is going on with me...
I'm on a lot of new meds including domperidone, nabilone, maxeran, zofran, prednisone, imuran, started Cymbalta for fibro, fentanyl patches, morphine and a whole bunch of others that I can't think of at the moment...lol.. ( I take approx 40-50 per day) I absolutely cannot go through this like I have been. The quality of life is just not there and I want it back. I've been sick for 10 yrs now, 8.5 of those was spent on bed-rest- alone. I went back to school (in hope of DOING something and meeting new friends and learning) but the stress is making it a little too much right now.
Life with Lupus has been very difficult and I need my life back finally! My whole adult life, I've been sick. I've never been able to work, I've been single and lonely (except for my awesome Wolf Pack friends that I met on here years ago who make my life so much more meaningful!). So anyways, sorry to drag this out- I am really hoping someone might have a clue as to what I can do to finally figure this out.....
Thank you for your time!
~Alyssa
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UNEEKTREASURES responded:
As a fellow Lupus 'friend', I have has a variety of symptoms. I have not had the extent of issues you have had but recently started suffering from severe upper digestive tract pain and diarrhea that comes and goes. The pain is so intense that I have thought many times to visit the ER. Since I also have pernicious anemia I increased by B12 shots and it 'seemed' to stave off regular episodes but not entirely. I wonder how your B12, Vit D and folic acid levels are??? Prior to a diagnosis of Pernicious Anemia, I almost died from it! It was my Rheumatologist who discovered it in time and saved my life. Please make sure you are checked for that as it WILL CAUSE PAIN, vomiting, diarrhea and many other symptoms that are often overlooked when you are being treated for so many other things. I would ALSO check with a cardiologist since 'stomach' pain for women who show no obvious reasons can indicate heart problems!!! Either way, both of these issues are life threatening and should not be ignored! I have an appointment with a gastro doctor and will be seeing my cardiologist next to get this resolved. I pray that in one of these visits your answer is found! Hang in there...we conquer and confront our 'Lupus' symptoms one at a time and since we are still here we ARE the survivors!
 
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gringa1 replied to UNEEKTREASURES's response:
Hi Alyssa, I my dear friend friend has scleraderma (not sure bout the spelling), but she to has been in and out of the ER with severe stomach pain just like you're describing, finally dr.'s said she has diverticulitis. Has that been mentioned?
I pray all goes well you Alyssa and you get answers so that you have a better year.
 
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little_blue_butterfly replied to gringa1's response:
Hi Gringa!
Thank you very much for your response! I have had a colonoscopy while I was in the hospital this last time and it was considered "normal" so diverticulitis has been (most likely) ruled out. My mom has it though and I've seen what she's gone through- while nothing like what I am going through, it's a difficult illness for sure! I hope that your friend is doing better now! Scleroderma is an awful disease too!
Thank you again for replying to me and for the prayers- I can use all the prayers I can get I hope that I do get answers too and sometime soon! So far 2012 has been a better year than 2011... I met a man while in the hospital and actually have a boyfriend for the first time in over 9 years! He makes me feel beautiful and is very good to me. I hope it lasts but even if it doesn't, he's always going to be a friend and he gave me something I had lost.... hope!
How are you feeling? How's your year going so far?

*hugs*

Alyssa
 
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lupylisa44 responded:
Alyssa

It sure seems like you've been through the ringer lately! I know you have probably had every test known to man, but have they check you for parasites?
50 different meds a day? Maybe your body is in revolt! Maybe your body is being overwhelmed by all the chemicals in it? Have you tried getting off some of them? Can you think of anything that was added before you started getting all the gastro issues?

I hope they find some answers for you

Lupylisa
With love, with patience and with faith, we'll make our way.


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