Cancer

[tuff case]

I had my Gall bladder out in 3/99, right after that the symptoms of IBS began which I was disgnosed with in 2/00. I was also disgnosed with Diabetes in 1997 (A1C 6.0-6.3 2003). In 10/02 I asked to be put on an anti-drepressent(effexor)(not for IBS).  12/02 I started getting nauseated every day with upper abdominal pain, this has now gone on for over a year.  While I was on the effexor I did not have any of the IBS symptoms, I went off the effexor in 11/03. 1/03 Pelvic ultrasound normal. 2/03 Metabolic panel with neg for HP IgG, ABS. My Primary Care Physian (PCP) and I tried switching me on to a different anti depressent to see if that may have been the problem after a month of no relief I went back on the effexor (better results) and he also then referred me to a Gastroenterologist (GE). 3/03 EGD results GERD grade II, Hiatal hernia, and Chronic Gastritis, Colonoscopy done at the sme time showed Few small scatted Diverticula, in sigmoid colon and small non-bleeding hemorrhoids. 4/03 Gastric Emptying scan within normal limits. US of Liver and Pancreas showed Liver Coarse schotexture w/ increased echogencicity seen throughout & hepatic duct 7.3 mm same as US preformed when gallstones found. Liver Panel normal and regular CT (not spiral) of abdomen normal.  (I also during 4/03 went to see a dematologist about white spots I get on my hands after showering which he explained was "hives to warm water" I was given clarinex however this no longer helps and I quit taking it and I nw get red hives on my face that itch in addition.) 6/03 had ERCP where GE found "There was no evidence of filling defect, but there was some sludge-like maerial pouring through the papilla with the injection of the dye. Sphincterotomy was performed for therapy of SOD (type II) or post cholecystectomy syndrome." I did develop pancreitis, in hospital for 3 days. I started having facial flushing (before the hives) that continued throughout the day and feeling as though somthing was building up in my abdomen and then releasing (about once every 3 weeks). 10/03 CA 19-9 normal EUS normal. 11/03 ERCP GE passed a Wilson-Cook 8.5 mm sweeping balloon through the sphincter of Oddi. 2/04 ERCP measured the pressure of the valves and found that they had to cut the SOD again and the Pancreatic valve, however since that time pressure building and release I felt once every 3 weeks is now at least 6 times a day and much more painful. I still have the nausea and abdominal pain. GE feels that it is IBS at this point and actually as ask me to try an anti-depressent paxil which he said he has had better results, but if I did not have the symptoms while on effexor I have a hard time believing this will help, considering I have eliminated stress in my life except this.  I am scheduled for another ERCP but I do not think he feels he will find anything. Could the problem be beyond the bilinary valves, is it truly IBS?  Should I request any tests be redone? Any advice Thank

[Kevin Pho, MD]

You have had a comprehensive GI evaluation, including the ultrasound, CT, ERCP, upper and lower endoscopies.  Other tests to consider would be a 24-hr pH study to evaluate for GERD or esophageal motility.

If the ERCP continues to be non-revealing, then IBS may be a consideration.  IBS is normally accompanied by a change in bowel habits (either constipation or diarrhea).

Increasing fiber would be the first treatment.  Antidepressants and antispasmodic therapy can be considered - there are small trials suggesting some benefit.  

Diarrhea-predominant IBS can be treated with Lotronex and constipation-predominant IBS can be treated with Zelnorm.  These medications can be discussed with your gastroenterologist.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

[krisg]

You are the only other person that I have come across that feels that "boom" feeling throughout the day.  I feel it right where the ribs split.  I first started to feel it after my first biliary sphincterotomy.  It would be sporadic.  Now that I just had a sphincterotomy on the pancreatic duct and again on the bile duct, I feel the "boom" throughtout the day.  You're right, the "boom" feeling is much more uncomfortable and makes me stop dead in my tracks to catch my breath.  It is like a big shock goes through the body or something.  It is hard to describe but you sound like you are experience ing the same thing.  I wonder if it is from the sphincterotomies??  Please let me know if you find out what it's cause is.  Thanks
Kris

[tuff case]

I am glad to hear that I am not crazy about the "boom" feeling.  I was not even sure how to explain it to the Dr.  An you so right about it stopping you dead in your tracks.  How long have you had it? What my Dr had said is when he goes in to do this next ERCP he may cut the other pancreatic valve that leads to the duedonum (spelling?)  I am almost afraid to have him do any more cutting.

[tuff case]

I did want to add the IBS symptoms I have are teh cramping and ugency to go the the restromm but not the costipation.

[tuff case]

Thanks! I will let know what I find out.  I know with the next ERCP the GE is talking about Cutting the pancreatic valve that empties intot he dueodonm (spelling?) Not sure I want to be cut any more because like you said everytime they only seem to make it worse.  How long have you had the "boom", (I like your term!)?

[krisg]

I have had the "boom" feeling since feb. 03 (my first sphincterotomy).  I had 5 months pain free from the procedure.  Then last July I started to have attacks of pain again.  I just had the pancreatic sphincter cut on March 24th.  I had an ERCP and the dr. measured the pressure in the pancreatic sphincter and the pressure was high.  He cut that sphincter and then recut the previous biliary sphincterotomy that I had last year (feb. 03).  I did get pancreatitis from the procedure and was miserable for a couple of days.  Since the procedure in march, I was feeling pretty good until yesterday.  I had alot of pain and it took lots of pain meds before it calmed down.  The dr. is thinking that the stent he put in my pancreatic duct is maybe clogged or causing pain.  I had an xray today to see if the stent has moved out of the duct but the radiologist wasn't very clear on his report.  I go friday for another xray to see if the stent is actually moving along or if it is still in the duct.  If it is still in the duct then I have to go have another ERCP and have it removed.  If it has moved on it's own then I just continue to recover and hope that the attacks don't happen anymore.  It is a wait-and-see process. And sometimes a painful one.  But I do feel that it will all be worth it in the long run.  Good luck with your procedure.  Do you mind me asking where you are going for the ERCP??
Kris

[tuff case]

I had a stent put after my lst ERCP in 2/3/04, however they schedule to remove it on 2/6/04 the day.  It was only put in to drain so that I would get pancreatitis again.  It also caused me severe pain and they wound up removing it the day before via an EGD less envasive.  That ERCP was done at the Uinversity of Chicago. All my other ones and the one I have coming up are being down by an Associate Professor of UIC but at a hospital in the northern suburbs of Chicago.  I am going to see him today and I hop you do not mind but I am going to show him what you wrote because it was like reading my own diary when I read it.  I want to really understand what it is he is going to do this next time and make sure he understands that there really made be a problem there and it may either have been caused by what has been done or that it has be irritated by what the ERCP's and the previous cuts. Good luck to you....

[krisg]

good luck and let me know what he says.....

[tuff case]

I notice to "buzz890 constant nausea" you noted that the problem maybe central nervous condition.  when I documented the first time I was limited to only 3000 words and eliminated some other symptoms that that I have also had including in 4/04 and 7/04 I had instances of vertigo, after the first instance I started having daily lightheaded spells. in April I did have a CT and an MRI of the Brain that were normal and and MRI of the neck that showed nothing significant.  I continue to get tingling and numbness in my hands and feet (always thought to be from my diabetes). Plus I have the eletrical shocks in my mouth and fingers and feet.  I had a tilt table test done neg. 5/03, had VNG in 9/03 positive then I had an ABR showing problems with the Wave 1.  I have had 2 ENG's that have been negative, only of my right arm and leg. I have and MRI af the nerve that rund from the inner ear to the center of the Brain and it also was neg. Arnold Ciari Malformation was indicated at one point and then ruled out be Brain surgeon.
I told my PCP only last week that I did not agree that what I had was IBS, because I really do not have much stress in my life since I have reduce so much, plus for 11 months of this time I was on an anti depressent during which I had NO IBS symptoms. But I would agreed that I have some nerve going on.  

For the lighted Spells they have put me on topamax which I have had extreme side effects to including major mood swings and extreme pins and needle feeling in my feet. these started at only 75 mg but had increased to 100 mg anyway and then went back down to 50 mg.  To level off mood swings.  Initally the Tompamax helped the lighted spells however I have since raised back up to 100 mg and the tompamax is not helping with the lighted spells and they are actually worse in teh sense that instead of only getting them once a day, I get them every time I go to stand up in the afternoon (once I get the first one.)  The idea behind the topamax was that the lightheaded spells was that they were migraine related, however I did not have headaches.  the lightheaded spells I would have only would occur in the afternoon genrally after I stood-up or was walking or standing and would go away after a few seconds (although like I said they do not go away as quickly any more>)

I have had rehab therapy for the dizzy spells however the therapists did not think she could help me.
My nuerologist had suggested that I have all the MRI redone after year (which is this month) however I do not go back to see him again until 8/04.  He had referred me to another Specialist that had put me on the Topamax but after he told me to regulate my own meds when I was having all teh side effects I have been working with my PCP.

Could you elibrate what type of central nerve problem there could be and suggest any central nerve tests that might indicate what the problem might be?  

Thanks,

Amelia

[tuff case]

Well I am glad I went back and spoke to my GE yesterday. I did not reashow him what you wrote but let him know that I know there was someone else out there who experienced the same problem.  I told him that I am not concerned about that nausea but I am concerned about this feeling I have that was not there before.  And I know he believes he is not going to find anything. So he suggested that we cancel the ERCP and that I go back to UIC and see the Dr. B that performed the last one "his mentor".  he and Dr. B have clinic on the same day and he actually discussed me with him again already.  So I agreed to go back and see him again.  Dr. B by the way is really on the best in for the Biliary system. How are you doing?
Amelia

[krisg]

I'm doing fine today. Yesterday was another story.  I started to have pain in the LUQ again, also hurts in the left shoulder blade area of my back.  I had to take pain meds again to get rid of the pain.  I went to the University of Indiana for my latest surgery.  I saw a dr. lehman.  He has been great so far.  I also went to my family pc on friday to have a second xray to check on the stent.  They tell me that they never received an order for the xray.  so I have to call the ERCP clinic in Indy to check up on that.
Hope you have a good day.
Kris

[paty91356]

Kristin....did you have any difficulties from the ERCP when they cut the pancreatic duct?  I had this suggested to me, but I've heard such horror stories from some folks who have had it done...they're no better,or worse than before, and some had very nasty pancreatitis after the procedure.

This is my story..I would appreciate suggestions or thoughts from any of you...

Had gallbladder removed about 25 years ago.  Have had LUQ pain, and sometimes left upper back pain...doesn't radiate...sometimes occur at the same time, other times separately.
Had first ERCP about 15 years ago due to fact that CT scan showed enlargement of the head of the pancreas..at this time, the doctor was unable to pass any instrument into the pancreatic duct, as it seemed to be narrowed, or tight..remember, this wqas many years ago, and the techniques and instruments have improved greatly since that time.....bottom line was that I didn't have CA of the pancreas (my BIG worry)...have had flare ups over the years when I feel lousy, get the pain, and have elevated liver and pancreatic enzymes, then it eventually goes away.

I was having moderate problems in October 2002, so had the repeat CT scan (with,, and without dye)...both showed same enlargement of the pancreatic head (maybe it's congenital) so had an MRI (with dye),and had an ERCP at a major uniiversity...the doc didn't test the pressure in the duct, as he was probably just looking to see if I had CA or not, and the entire pancreas loooked normal...he mentioned the cutting of the duct as a last alternative, but painted a rather grim picture of the complications of this procedure.

Latest severe episode was a year ago when I had a total hip replacement and the post-op narcotics gave me LOTS of pancreatic pain, nausea and vomiting, and the lab work was alkaline phosphatase that went up to 205, SGPT that went up to 424,bilirubin .03 lipase 101, amylase 50-79-normal.
I felt so horrible that I went "cold turkey" off ALL pain meds on day 3...this was not an easy thing with the new hip and ambulation, but it was better than the pancreatitis....GI doc attributed it to the pain pump the first few days (Dilaudid) and   the post op Vicodin....NEVER WILL USE THESE DRUGS AGAIN.He said that sometimes the antibiotics will trigger a spasm in the Oddi spincter,and the pancreatitis is the result.

The latest flare up started about 3 weeks ago and the only thing I can attribute it to was that I had shingles, and took Advil, or Extra-strength Tylenol for the pain, ands started Atkins Diet, and maybe my pancreas was saying "NO " to all the fats in the diet...
I am an RN, so have just learned to live with it, and ask questions and learn from others whenever I can..
Any volunteers out there with ideas, suggestions, thoughts?
Many thanks,
Pat

[krisg]

Sounds like you have been "through the mill" too.  I had the pancreatic sphincter cut (due to high pressure) and the bile duct too on March 24th.  I did get pancreatitis from the procedure and was hospitalized for a couple of days.  They put a temporary stent in during the procedure to try to prevent pancreatitis.  So I only ended up with a mild case. I have had 3 days pain free with no pain meds since the procedure.  All the other days I have had to take pain meds. to bare with the pain.  I talked to the nurse at my dr.s office today and she said that it is too soon to tell if the treatment has worked or not.  It is a wait and see process.  I will be able to tell in 1-2 months if I feel better or not.  They also found that I have celiac disease too.  Something that no other doctor thought to check for.  I have read that it is very common in the US.  I can only tell you from my experience that I honestly don't know if the procedure will work or not.  It has been almost 3 weeks and no improvement yet, but I am still alittle hopeful.  I do get sick of taking pain meds but when I need them, I really NEED them.  It is better than going to the ER anyway.  I hope you find relief and please feel free to e-mail me if you want to ask any more questions. Make sure the subject line says ERCP or I might delete it.
Kris
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