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07/16/2010 06:28 AM

GI or gallbladder problems in lupus patient

LilyMofetz
Posts: 12
New Member

I hope someone can help. My best friend suffers from lupus. Last summer she was fortunate enough to receive a kidney from a relative, but ever since the transplant (maybe 3-4 months after) she has been plagued by severe abdominal pain a few minutes to a few hours after eating. At first, the triggers were fatty or spicy foods, but now almost any food sends her into excruciating pain--and on several occasions to the ER. She has no evidence of gall stones, but some have suggested gallbladder removal. At present she is out of our home state visiting family and has been hospitalized twice. The most recent ER dr said it may not be the GB but has no idea what is wrong. Can anyone relate to my friend's situation? If it is relevant, my friend is in her late 50s and has no other known medical conditions like cancer, diabetes, etc.

I have watched my friend cope with this disease for over 10 years, and I must say that I have such respect and awe for the strength and courage lupus sufferers display. Thank you if you can help.

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07/16/2010 09:27 AM
Teatime
 
Posts: 41
Member

Well, if they suspect it's the gall bladder, they really do need to evaluate that. I had to have my gall bladder removed when I was in my late 20s so I really can't comment on that in relation to Lupus.

However, I have had a lot of GI issues along with my Lupus. Inflammation has plagued much of my GI tract. Her rheumatologist needs to run the GI autoimmune panels (immunoglobin tests -- IgG, IgA, etc.) to see if they're elevated. Mine were, and that's the first indication of Irritable Bowel Disease. (IBD is different than Irritable Bowel Syndrome. IBS is less specific. IBD refers to diseases like ulcerative colitis and Crohn's Disease.)

My rheumatologist sent me to a gastro-enterologist who did endoscopy and colonoscopy. My colon was fine but he found severe inflammation in my stomach and esophagus. They decided that my attacks were likely Lupus Enteritis and I was put on medication that helped.

Most recently, though, the attacks have gotten worse in severity and I had moved to a new city so my new rheumatologist sent me to a new gastroenterologist. He did a capsule endoscopy last month and found damage from Crohn's Disease AND Lupus Vasculitis in my small intestine. Crohn's is also an autoimmune disease so, unfortunately, I now have 2 autoimmunes to manage, grrrr. It isn't very common to have both but it's not unheard of, either.

Your friend's problems could be caused by so many things that it's important she push her rheumatologist to investigate it further. Early on, some of the medications (especially methotrexate and Plaquenil) did a number on my stomach and that caused a lot of discomfort. But, later, everything became much worse.

She needs to push her doctors to take a more assertive approach in diagnosis and not let it go.

I hope this helps!

Julie


07/16/2010 09:42 AM
LilyMofetz
Posts: 12
New Member

Thank you, Teatime, for your response. I will relay this information ASAP. I hope that you will experience improved health in your new city. With all you have on your plate, I truly thank you for reaching out to help someone else. Take care!

07/16/2010 09:58 AM
wozment
wozment  
Posts: 363
Member

I have been dealing with the exact same issues for about 8-10 yrs now. I was recently diagnosed with lupus, but was diagnosed with ulcerative colitis about 8-10 yrs ago. Anything I eat causes horrible pain along with chills and sends me to the bathroom within a few minutes of eating. Kinda embarassing when you are trying to have a nice night out. Lol. I was put on medication way back then for it but stopped taking it due to the fact that the meds made me even more sick...just in a different kind of way. Lol. In 2008 I also had my gallbladder removed. I dont recall my gall bladder giving me any GI issues, but the again, my ulcerative colitis is so bad that I probably wouldnt have noticed. Wink Your friend should have a colonoscopy right away as it sounds very similar to ulcerative colitis and Crohn's. My doctor during my last visit was upset with me to learn that I had not been taking my meds for years and had not had a repeat colonoscopy after being diagnosed for U.C. many years ago. She told me that if left unmonitored that u.c. could turn into cancer. Yikes! So, now I am due for another colonoscopy in the next month or so. What fun!

Make sure your friend gets checked ASAP! Let us know when you know more. Keeping your friend in my prayers.

~Wendy


07/16/2010 03:06 PM
mumeva
mumeva  
Posts: 6143
Group Leader
I'm an Advocate

What a wonderful friend you are to stand by your friend through her illness. I agree with these other ladies that she should be checked as soon as possible because there could be something else going on with her. I will send prayers her way.

Hugs,

Eva


07/16/2010 03:32 PM
LilyMofetz
Posts: 12
New Member

Thank you all so much for your recommendations and for your prayers and support. I passed the info along to my friend today, and I think she has some new avenues to explore when she is finally back home and can see a doctor. She is several states away and was in enormous pain today; the pharmacy was taking forever to fill her Rx from the ER last night. The ER drs gave her a referral to a doctor where she is, but she can't see him/her because the doctor is out of our network of providers (we are both high school teachers at the same school) I am outraged that these insurance companies have such power over our lives, yet I am ever mindful of those who have no insurance...anyhow, my friend doesn't have the money to consult with the out of town doctor. She will be home late next week and I hope I convinced her to get an appt. set up for then. She is beyond depressed and tells me that she is "sick of being sick." I can understand why. If anyone has had or knows of someone who has had a kidney transplant and then started having problems such as my friend, please respond with info. The transplant team left the diseased kidney in her body, so she has three kidneys, and I have wondered if something is crowded and cutting of blood flow or presenting an obstructions. Thanks, Eva and Wendy and Julie. Take care!

07/16/2010 04:57 PM
Teatime
 
Posts: 41
Member

Lily,

It can take a while to get an appointment with a GI doc so I think it would be helpful if she could call her rheumatologist back home, tell him what's going on, and ask him to set up a GI consult. It will probably take a few weeks to get a "new patient" appointment and she would be wasting precious time if she waited to call until she got back.

I was a high school teacher, too, until I became too sick to work. I think it's pretty amazing that she's muddling through all of this! She needs to get these things resolved ASAP or it will be difficult for her to start the school year!

Julie


07/17/2010 05:43 AM
LilyMofetz
Posts: 12
New Member

Julie, you would be amazed at this woman's strength (but I think you all are amazing to endure what you have and then to reach out to others as you do!) I call her The Phoenix because she has come back from the brink so many times. She really appreciates the help and prayers from the members of this site, and there may be some good news to report! She texted me last night, again from the ER in the state she is visiting, and through several ultrasounds and tests they were able to rule out a few ailments and believe that she has a pyloric ulcer. She won't be able to return home (we live in the deep South and she is in a Western state presently) until next Friday, and I kept pushing her to get an appt. set up NOW given the long wait you described and the fast approaching start of a new school year. The ER staff told her that she would have to have an EGD (so did posters on this site!), because that is the only way to get a look inside and see what is causing the pain. I told her to really push her doctor to do something to get her in fast to the specialist. I am hoping that once she is accurately diagnosed and treated that she will join this forum, because I know she could benefit from it and could help others. Thank you, again, and I will let you know how it goes. Take care.

07/18/2010 04:56 PM
Bunnyhugger75
Bunnyhugger75  
Posts: 2019
Senior Member

How sweet of you to help take care of your friend! What amazing women you both are. I'm glad she is keeping you updated and I hope she is feeling better soon. She is lucky to have an advocate on her side. Please take the best of care of yourself and her!

Amy

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