SLE cause of recurrent ABD pain

[nurseRN]

I am a 40 year old female with mild SLE X 15yrs. Never on steroids and no renal invovlment. Since early disease I have had episodic splenic flexure area, severe colicky pain, worsened by anything PO, assoc. with occassionally diarrhea, other times vomiting. These episodes are self resolving in 1-2 dyas with bowel rest.Flex sig was negative, flat plates show dilated loops when having pain. Recently I have had localized, hepatic flexure area pain with a clean gallbladder sono and no rise in LFTs. This pain also comes on suddenly, is colicky, localized, tender to mash on, worsens to extreme colciky pain 30 min after even fluids, is associated with nausea, obvious hyp0motility and malaise. After aprox 2-3 hours and being NPO except for sips the pain gradually decreases.CT of the ABD was essentially negative though there was some question of bowel wall thickening.  Question is; could this be recurrent, intermittent bowel ischemia from SLE???

[Lor]

I'm not sure if I had spasms or not. To me it felt like a lot of pressure and had the feeling something would burst in me. The back pain was sometimes just as bad as the stomach pain. I say stomach because it was in the area. I did toward the end develope clay colored stools. I went back and forth from being constipated to having diarrhea. Which is probably why most of the Drs I saw said I had IBS. Never had jaundice. I thought to have that there would have to be a blockage? My problem was the shpincter to the bile duct didn't open enough to let the bile out.
I was not treated at the Clinic for pancreatitis. The clinic is  at Baptist Hospital in Jacksonville, so they are set up if needed. I woke with a stomach ache. I think that is pretty normal. The pancreas reacts to the foreign fluid pushed into it. To check the pressure of the bile duct they use saline. I was very informed on what to watch for over night vomiting and stomach ache worsening. The Dr told me if I got worse go to the local ER and tell them what test I had and the high risk for pancreatitis. I did they got right on it. I was given Demerol for the pain. What a relief that was. They do take you off food for about 3 days. You don't even miss it. The only thing they give you is pain management, potassium chloride and an acid reducer in your IV. I went in on Friday morning by Monday I was feeling good enough to go on my Daughters field trip. Probably I should of stayed home, but kids just don't understand. I don't know if what happened during my treatment is norm, but I think the key to quick recovery is knowing what to look for. I'm also not one that can sit and feel bad forever. Trust me if you get pancreatitis you know it. I sure would go through it again knowing what I know now.
By the way one of the Drs I saw while trying to find out what was wrong with me was at Shands in Jacksonville. I asked him a year befor I was diagnosed if it was possible I had SOD - he said no way! Said he knew about it but didn't feel it was an illness and would not even look into it. I went for another year with my pain getting worse by the day. I would never go back there.

[seashoretracks]

Actually I live in Virginia, but lor said she went to the Borland-Groover clinic in Jacksonville.  Thanks for the information on Shands - it's good to know there are some great places out there.  Being treated like royalty is great!

Next week is my MRCP at the teaching hospital.  My cholesterol is also high, but liver enzymes are normal.  White blood count keeps going up though, then it comes back down.  We'll see what the MRCP shows.

Best of luck to you also, let us know your results.

[Addie]

Do you live near Gainsville, Florida as I see you mentioned Jacksonville.  Shands hospital there is a wonderful teaching place and this is where I had to travel twice for another problem i had 4 years ago.  I was treated like royalty. Perhaps there are specialists there you can contact.

I live in Houston where we have the world famous medical center. But, still waiting for my reuslts of the MRCP/MRI/MRA of the tummy.  I too have had elevations of liver tests, mainly the ALK Phos?  My cholesterol is always around 205-215.  I cannot ever remember it being under 200 where it should be.  ~~~sigh~~~

The very best to you.

[seashoretracks]

Thanks for the encouragement.  It's good to know how long it takes to get an appointment.  I live in Virginia, so it's a ways, but not as far as it could be.

It sounds like your SOD was not spasms, but actually too small an opening?  Also, did you have any symptoms of the bile being blocked at all?  It sounds like you never had jaundice or clay colored stools or anything.  Also, I believe you said your liver enzemes only became slightly elevated after this had been going on a while.

Also, a question about the pancreatitis, what did they tell you to look for, and did they treat you at that clinic when it developed?  You said they were able to give you pain medicine for it, so I guess the treatment was IV fluids (no food or drink) to let the pancreas rest?  Also, did the pain medicine work and what was it?

Your story has given me hope, thanks so much.

[Lor]

I am fortunate to live in Southeast Georgia, so traveling wasn't a problem. Insurance is a big issue for me. I am a Military dependent. I know so many people think we get our health care free - we don't. The worst part is not many Drs with specialties except the payment our insurance will cover. In fact Borland- groover doesn't. Plus my insurance came back the day before my procedure and denied payment. I was miserable and felt this needed to get done. Before it was too late, and something else went wrong. I went ahead with the procedure and figured I'd take care of it later filing a grievence with the insurance company. By the way they denied because they wanted me to have another ultrasound. In the year and a half I fought this pain I had 2 CT's,ultrasound,4EGD's, ERCP,2 gastric emptying tests, and numerous blood tests. For them to come back asking for an ultrasound. I thought that was a big waste of money. My Dr at the clinic said he'd work with me and felt this needed to get done ASAP. That was April - I still have yet to get the bill. I know its coming, but he is still fighting for me.
I would have traveled anywhere to get help. It took 2 months to get in with them. Once in they were ready to do my procedure 2 days later. They work quickly because people come from all over the country. Keep that in mind as you fight through all the Drs and their BS.

[seashoretracks]

Hi addie,lor, and Taylee,

I really appreciate the information lor, and I have visited the web site of that clinic.  They look like they know what they are doing.  I am keeping it in mind, but hope I can be fixed before having to do that.  If I have to go to Jacksonville, I hope my insurance would cover it, did you have to travel far to go there or do you live near by?  I'm praying that I can be fixed at the teaching hospital soon.

I too, am a mystery because everything is normal.  Except white blood count goes up sometimes.  I am now having "shooting" pains once in a while inside on the right side.  They feel like they are right in or under the liver area.  By the way the EGD and colonoscopy done recently was normal (all biopsies were normal).  I'm wondering about this "bump" they found where the small intestine connects to the bile duct.  Biopsy of it was normal, but I wonder if it doesn't cause irritation.  Also, I haven't seen anyone on this site with retained stones, I wonder what the symptoms are for that.

[aniee1]

Is anyone having problems digesting fatty food?  I'm on a low-fat diet and still having problems with pain right under my right rib-cage that radiates to the back. The pain is constant. I also went to the ER last month, severely vomiting. All they did for me was to give me a shot for nausea and 2 for pain and sent me home. The ride home was unbearable because of pain in my rib section and back.  I went to see my doctor , who thinks I have SOD and I'm seeing my Gastro on the 21st of June.  This pain has been going on for soooooo long now. I need some relief!..........Aniee

[Lor]

I have read that the ERCP is better than the MRCP. I believe the MRCP is done more like having an MRI. Where as the ERCP gets into the duct and then injects dye to look for obstruction. MRCP can't do that.
To have ductal dialation - you really should have an ERCP could be just inflammation. It could be something more like a cyst or small stone. The sooner you do it the better off you would be.

[Addie]

I had an ERCP done in 1990.  It showed some dilation and the report states:  SOD on the 45 minute film most likely due to the administration of narcotic agent used in test.  I do not know if this was done with a mamomotry (sp)

I did not suffer any ill effects, i.e. pancreatitis with this test so perhaps I had a plain ERCP done.

I am still waiting to hear what the MRCP/MRI/MRA of the abdomen/bile ducts are, taken on Monday.  

I was also told that there are only a handful of radiologists in this city that know how to read the MRCP.  I had these tests done at a very large teaching facility. The draw back on these tests is holding your breath, sometimes up to 25-28 seconds as many as 8-10 times during these tests with the weight belt? stapped across one's abdomen.  I was told they did get very good clear pictures.

Waiting to hear something...........

[seashoretracks]

I'm having an MRCP done next week at a large teaching hospital, so I am hopeful it will tell me something.  After that, my Dr. may be talking with me about an ERCP.  Taylee, I understand your concerns, and if I have to have an ERCP, it does make me a little nervous thinking about it.  However, if that is what it takes to get better, I hope I can do it.  It sounds like the plan ERCP maybe isn't so bad.  I have a friend who had one here at our small local hospital, and she had no problems at all.  I would not have done it here, but would rather be at a teaching hospital to do it.

By the way, with my fiend, it was right after gallbladder surgery that this happened.  She suddenly felt bad and her liver enzyemes were up, so they did the ERCP right away.  Didn't find anything, they determined that she has a fatty liver, but she has not had any problems since then.  I think she is avoiding very fatty food, but really is not on a restricted diet.  She seems to be able to eat what she wants and doesn't have pain.

[Lor]

It took me 5 Drs to figure out what was wrong with me. Everyone I went to said "you look good to me". Finally one referred me to the last one. Who knew when I walked in the office what was wrong. I can tell you I had my gallbladder removed in Nov of 2000. I started having pain right away. All my blood work was normal until Dec 2001. Then it only show a slight elevation in my liver. I mean SLIGHT. I was concidered a stage 2.When I had the ERCP with menometry done my pressure in the duct was at 90%. The high pressure is what determines SOD for those who are saying MRCP shows SOD - I think not because the MRCP can't read if the pressure in the duct is high or not. Taylee hang in there - don't think for a minute that you have to take one Drs word. If you feel there is something wrong keep searching. Visit my Drs website read about it. borland-groover.com

[Addie]

When my gastro lady was asked to order either an MRCP or a ERCP, I figured she would do the least invasive first to see what this showed.  The 1990 ERCP was a breeze but then I may of had a plain and simple one?

On various internet sites, it states the accuracy is very good for MRCP's if they get someone who knows how to read these things.

I also heard/read that if an MRCP does indciate treatable patholgy,
there are other approaches to rectify various problems besides an ERCP.

One gastro doc told me last year that he quit doing ERCP's because all his patients ended up with Pancreatitis.  I wonder if it was "him".  

Still waiting to hear something..........and my doc is going on vacation and attending a medical convention starting tomorrow so I may not hear anything until next week sometime.

[taylee]

Lor,
THe reason I really don't go forward with ERCP is because the Dr's tell me they really don't think they would find anything on the test, since I only had Chronic Acalculous Cholecystitis (without stones) that it is unlikely they would find anything else. And about the SOD, my liver functions are normal, so they don't really think I meet the criteria, except for type 3 which doesn't "respond well" to the sphincterotomy anyway.
How the H#$% am I supposed to make an informed decision when I have them telling me in essence not to do it? I think they are only willing to do it to prove me wrong, or shut me up.
UGHHHHHHHH. It is so frustrating. Wish they would step up to the plate and really help me decide, instead of scaring me away.
thanks for listening.
Taylee

[taylee]

I was told that MRCP was not as good as ERCP and can NOT detect oddie problems or stones in ducts? Two different opinions?
LOR!
Can you answer this for us?
I had the MRCP and it was ok except for mild extrahepatic ductal dilation.
What does that mean?
Yes, and what choice in the end does one have except to do the test with manometry and find out once and for all?
Maybe I will get brave at the end of the summer.
Taylee

[Addie]

I had a CT scan of the stomach last week.  They called and said I had dilation of the bile ducts, and something about extrahepatic and intrahepatic "something"

The radiologits requested to the gastro doc to order either a ERCP or a MRCP (cholangiopacreatiogram) plus a full abdomen MRI/MRA.

I went to a large teaching hospital and asked the radiolgosit if an MRCP is as good as an ERCP and he said, "it is better". And, this will pick up all the ducts and Oddie problems.  I am waiting on the results as I am typing this.  I feel there is something definatley wrong and perhaps a stone lodged in the cystic duct even though i had my gallbladder removed years ago.

[Lor]

Yes, SOD can be present before. Some think this is what causes the gallbladder to go bad in the first place. That is only with a nonfunctioning gallbladder.
The ERCP is not as bad as some lead to believe. Yes, it does carry a risk, but doesn't everything? The more simpler ERCP is a lot safer than the more complicated ERCP with menometry. Unfortunately the simpler doesn't diagnose SOD. If this is the only way for someone to get rid of their pain. What choice is there? I couldn't see myself going on the way I was.

[Lor]

I'm wondering if you ever had a Hida scan with ejection fraction done? A nonfunctioning gallbladder would cause this type of pain, also sphincter of Oddi Dysfunction. Unfortunatly SOD isn't found until after the gallbladder fails.

[taylee]

Can't SOD be present before the GB removal?
I think I had the same thing before the surgery, even though I thought it was something that developed afterwards.
Lor, you certainly are brave to get that ERCP!
Taylee

[taylee]

I too wonder if I was having the intermittent ischemic pain, but from fibromyalgia and being too thin. The doctor said very thin people are more prone to it. I too have the same symptoms, but don't have SLE, (lupus) although my daughter tests positive=high ANA, no abnormal complement studies, so far.
I had the MRA, (magnetic angiogram to see if I had intestinal ischemia, and it was negative. It does hurt in the flexure areas, mostly hepatic, but once and a while on the splenic side.
I was then told I may have Sphincter of Oddi dysfunction, type 111 and need ercp to fully diagnose.
Not sure what is causing your pain and discomfort, but wanted to share my story, as I have similar problems.
Taylee

[XEMT]

if its ok with your dr. try gas x and see if that stops the pain.what is sle? take the gasx when you first start hurting.