Has my specialist got it wrong?

[BobUK]

I currently have a constant pain in the centre (sometimes slightly left) of my stomach about 3-4 centimetres below the breast bone. I sweat a lot all over my body (although it does seem to react to heat and excercise and is not constant) and I think it may be because of the excess heat being generated from my stomach. I also get nausea, tiredness, insomnia, dehydrated constantly and occasionally irregular heart beat.

My problems started about 5 years ago after a 6 week holiday to Mexico where we were only eating one meal a day and about 4 weeks in I had a severe bout of diarrhea. I then started to notice that I was sweating a lot more than usual, this was mainly just under the arms. (you are thinking how does this relate but please bear with me).
I went to see a specialist and tried several things including beta blockers and glycopyrrolate (which was supposed to be the silver bullet) but nothing really touched it and most made it worse.

I started to notice the pain in my stomach about 2 years later, although I may well have just been dismissing it earlier as the sweating was far more distressing. It started off just being when I lie down and has now progressed to being constant but worse when I lie down.
So I went to see a gastroenterologist and thats when the fun really began. I have had the total array of tests including 3 day urine test, stool test, H. Pylori, gastric emptying, gallbladder emptying, liver & kidney function, allergy plus the entire array of blood tests from the sheet at the hospital.
I have also had several ultrasounds and MRI including 2 MRIs whilst having secretin injected.

I have had a whole array of medications to deal with IBS and GERD with the only one that did anything being Busopan. I then managed to convince him that it was neither of these which is when I had the emptying tests and MRIs.

The gastric emptying showed delayed emptying and the MRI with secretin didn't really show anything but was really really painful which lead him to believe it was a Sphincter of Oddi problem. I then had an ERCP with manometry where they found slightly elevated pressure and did a sphincterotomy and a stent.
I ended up with pancreatitis and spent a week in hospital.

I then had 2 further ERCPs, the first measured the pressure slightly high so a stent was put in the pancreatic sphincter and in the second it was removed and I had botox injected into the stomach sphincter (this was about 4 weeks ago).

The botox has definitely relieved some of the bloating pressure but I actually feel worse and there is definitely still some of the pain there.

He now wants a surgeon to surgically open the pancreatic sphincter and Oddi, but I am not convinced that this is the right course of action and it will mean a fairly major operation.

So my questions are:
1. Has anybody else had constant sweating problems related to heat with a similar condition?
2. Does the pain seem in the right place for this (as most seem to be more on the right)?

[amanda2]

What finally happened after taking the flagyl?  Because I just read your story today and it sounds a whole heck of a lot like my story of living in Mexico for three months and getting hep from shell fish AND parasites.

[Matthew007]

good luck with flagyl.. you'll be hating it but stick with it.  Everything tasted like vinegar and smelled like it too.. terrible stuff.  Hang in there.

[BobUK]

So after seeing the specialist I haven't really got any further.

I suggested Giardia, liver cirrhosis and Hepatitis to him.

He said that liver cirrhosis would have shown up on the numerous scans that I have had (ultrasound/MRI etc.) and that Hepatitis would have shown up on numerous different blood tests.

He prescribed me a course of flagin (same as flagyl) which I will start next week. But I think he did this more to just shut me up as he clearly couldn't be bothered to do the tests.

He also gave me something to surpress the nerves in my stomach as he thinks this may be a cause of the pain. He seems to given up on the idea that its anything to do with my pancreas after all of that!

I guess I will give another update once I have tried this latest batch of stuff out.

Bob

[Kalio1]

Hep c also causes thyroid dysfunction and can mimic IBS and is causal for diabetes type II.
Dark urine is a BIG SIGN of Hep. but often goes unmentioned at the docs. I hope you post back after further testing.
Good luck with your further investigations.

[BobUK]

Thank you for all your comments.

I have had a stool test for parasites in the past and also tested for Thyroid function several times.

You are right and it does seem stupid to keep drinking. It is the only thing that has kept me sane in the past (and probably made things worse), guess I will just have to sack off the whole summer.

I can't believe with the massive amounts of tests that I have had that they wouldn't check for liver function and Heptatitis. That said my urine is always very dark, I had always assumed this is because I am dehydrated most of the time.

This has given me some good stuff to bring to my specialists attention on Monday. I will let you all know how I get on.

Again thanks for the comments, its good to be able to talk to people about it.

Bob

[Linda J]

Bob, please be sure to mention the parasite issue to your doctor and the connection to your Mexico trip. My son's stool NEVER did test positive for giardia, but they finally deduced that it was, as everything else was ruled out. The flagyl had him feeling fine within days. I'm no doctor and can't say that is what you have, but anytime I hear someone has illness after being out of the country, parasites are something to consider.

Good luck to you!

Linda J

[Kalio1]

I know it makes NO SENSE that they wouldnt check for Hep but it just isnt standard to do so, I had every test on earth but they had NEVER checked me for that. It is WELL worth it to go ahead and get tested for hep a, b and c, it is a simple blood test but you have to ASK for it. I am suspicious because of your pancreas giving you trouble and other symptoms you describe because those issues have been linked to hepatitis c and many of your symptoms DO sound liver related, also the temp. relief when drinking is a tip off. Easy to pick up in Mexico too and often misdiagnosed, so before you go having something as radical as  surgery rule it out, make SURE it isn't an underying issue like hep causing it. If it is then solving the hep COULD solve your pancreas issues. Have a complete liver panel run, call and request it and request a full hep screening and check out your liver enzyme levels, biirubin, etc! hep can aggravate your galbladder, pancreas, intestinal system and on and on. It causes all kinds of intestinal weirdness. liver issues such as hep are called "silent killers" because they are hard to diagnose and the symptoms are not consistent or always present. I am no doctor, obviously, but I read your post and it sounds so FAMILIAR I wanted to suggest you cover that base before you submit to a surgery.
Hepatitis is a sneaky disease and can be hard to diagnose, the symptoms don't always tip off the docs either, the virus' are sneakier still. I'd hate for you to cut on your pancreas without being SURE. Once a doc decides you have a certain ailment they are often resistant to changing their minds and that can work against you, the patient. A full liver panel is a good idea anyway if you drink, might be a good wakeup call. I didnt know I had it and continued to drink wine at night, at parties, etc. because I had no clue! Needless to say, I don't drink now. LOL It isnt bad either, I dont miss it like I thought I would.
I know so many folks who were misdiagnosed for YEARS, told they had other problems and finding out by accident they had Hep. from a life insurance test or something.
You do not have to have a drug use history to have picked it up somewhere along the line, especially if you travel to far flung places. I got it in a HOSPITAL. Well worth the price of the test, the doc should have no prob. ordering it. The drinking you are doing might make you feel better in the short term but overall it is making you worse, you have to curb that, it can mask symptoms and complicate the situation, you body is under stress and alcohol is fuel to the fire.
Good luck, cover all bases before ever letting them cut part of you away out of desperation for some relief from your symptoms.

[Kalio1]

Have you had your liver checked out? Have you been tested for Hepatitis A, B and C? Seeing how this started in Mexico, I'd check it out right away. I'd lay off the booze all together too, that is surely making things worse. Get a blood test and make sure you are not pos. for Hep. I agree with others you could also be dealing with some parasite. I'd do more investigating before I had any surgery and FOR SURE check for Hep. How are your liver enzymes? Any dark urine? ight coored stools? The sweating, pain, temporary relief with alcohol all make me think you need to get a good look at your liver. Hepatitis can cause all kinds of symptoms including the sweating and other symptoms you mention and often people are misdiagnosed so check that out and stop the alcohol no matter what it turns out to be, the alcohol only makes things worse.

[Linda J]

Hep is one of the first things they checked me for. A,B, C and autoimmune. My gyne ordered A and B before my ovarian surgery along with normal bloodwork and then my gastro repeated all. I'm not sure why some docs don't "think" of this.

Linda J

[Kalio1]

Because it manifests itself in people so differently. Some get sky high enzymes, some don't, some have no symptoms at all, some turn yellow. It is mistaken for other things consistently, thyroid is a popular one, the pancreas is right there too and can be involved. Gallbladders act up from it. We think of viral hep as a liver disorder but in reality it is a blood disorder and therefore affects your immune system and can involve many areas of our system. I was told it was an allergy to a drug I was given at one point. Some have tummy pain while others bloat, some are constipated, others get the runs.Also symptoms can come and go, which makes it even harder to diagnose and the doc sometimes begins to view the person as just a complainer. If I was a doc, I'd rule it out first because it can be so sneaky and is causal to so many disorders, diabetes type II for one. People's lifefstyle habits are not always shared with the doc and that too can factor in. If you dont drink and are in good health, exercise and eat right you might not even think of testing for it. Too bad it isn't standard procedure to test for it because it is estimated there are 5 or 6 million people walking around with Hep and they don't know it. Finding out "by accident" is the most common thing you hear, either donating blood or being tested for life ins. or a job are how many find out because so often there is no hint of underying problems.

[Linda J]

Not to pry, but is that what happened to you? Hep was diagnosed by accident?

I agree it is a simple thing to rule out and my doc ordered it with the initial liver panel screening.

Hey, I know you and I have had some differences of opinion on this forum, but I am certain that we both have good intentions. I'm willing to bury the hatchet if you are :-)

Linda J

[Linda J]

Bob, this is just a thought, put have you considered a parasite like giardia? My son picked it up in Canada and I know you can get this type of thing in Mexico too. It doesn't always show positive on a stool culture,  due to the life cycle of the organism. It is treated with flagyl. Maybe you could ask your doc about this before you have major surgery. I know there are other parasites that cause similar symptoms. My son was very ill with stomach pain, nausea and diarrhea for weeks before he was properly diagnosed. He ended up in the hospital on IV fluids, as he had lost 10% of his body weight in a short time. Hope you find an answer.

Linda J.

[BobUK]

Sorry for the extra long post, but I always believe more information is better.

My tolerance to heat has gone down drastically and seems to be inline with my stomach getting worse. My stomach feels constantly hot.

I lost 28 lbs in the 6 weeks in Mexico and haven't put a huge amount back on. I currently weigh 185lbs and am 5'9".

I always had a bloating feeling and could push on the pain area and feel things moving (liquids/solids?). After the botox this improved and I am fairly certain my stomach is emptying properly, but the pain is still there and I can still seem to do this (even if I haven't had anything to eat for hours).

If I don't eat for 7-8 hours the pain is still there but things seem to move (again some sort of liquid) on there own and the pain will subside.

Eating does seem to ease the pain, but can make the pain much worse a while later.

The only thing that I have found that really works is alcohol (which also stops the sweating). The next day the pain will be much worse. I had a 5-day Stag Do over the weekend (which unfortunately involved quite a lot of drinking) and 2 days later it felt like something was about to burst out of my stomach. I have tried a 3 month detox with no alcohol at all and healty diet but it had no effect.

Many Thanks for any answers and any insight people can give.

Bob

[Kevin Pho, MD]

To answer your questions:
1) I am not aware of the sweating problems being related to Sphincter of Oddi dysfunction.  You can check various metabolic diseases like diabetes or thyroid dysfunction.

2) Sphincter of Oddi dysfunction can manifest with yur symptoms.  Typically this causes gallbladder-like symptoms - which normally localizes in the right upper quadrant.  

I agree with the surgical sphincterotomy as the next step.  It seems like a comprehensive evaluation has already been performed, with failure of Botox injections.  A surgical option would then be the next step.

These options can be discussed with your personal physician.  Another GI opinion can be obtained if the treatment course is in question.

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.

Kevin, M.D.
kevinmd_