out of options

[JANIEL]

Hello, my name is Janiel. This would pretty much be my last option of getting help. I have an extremely hard case to crack. In March of 2001, I had a routine gallbladder surgery for stones. I woke up in recovery in the worst pain ever. It felt like I had a knife in my diaphram and radiating into my shoulder blade. It is now the end of 2005 and I have not gotten any better. I have had 5 doctors give me different diagnosis. I have been told that I have gastroparesis, bile gastritis, barrets, sphinctor of oddi disfuncion and possibly chrones. I have had a surgery to try and correct the gastroparesis called Rouen-y-loop, nissen, 2 ERCP's, ulcers.  I have had so much blood taken, every test imaginable done and so many medications been introduced. They still can't find the source of my pain. I am very tender to touch on the right upper side, sharp pain in my eppegastric area, referred pain in my shoulder blade and nausea. I am now down to 95 pounds and loosing, especailly after the stomach surgery. The mayo clinic has turned me down for help. I don't have a gastric dr anymore, because they say there is nothing more they can do, so go back to my primary.  My primary says he does not know what else to do, so here is some Darvocet.  I am lost as to of what to do or what kind of life I am going to have.  What do I do?  Please help me.  I would appreciate any help you can offer.  Thank you thank you thank you

[Kevin Pho, MD]

It would be difficult to give a unique diagnosis over the internet after you have been evaluated by so many physicians.  

With the tests you have mentioned, I cannot think of another test that has been missed.  I normally would consider Sphincter of Oddi dysfunction - but this has been tested for with the multiple ERCPs.  

If 5 physicians cannot give a concrete diagnosis, you can consider a referral to a pain management clinic to manage the symptoms.  

Another option would be to consider another opinion at a major academic medical center.  Although the Mayo declined a referral, there are many other hospitals that are able to give another opinion to difficult cases.

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.
http://www.straightfromthedoc.com

[JANIEL]

Thanks for the response.  I appreciate anything that you can offer.  Seriously, with what they keep saying, what kind of life I can have?  If I do not have a GI, and no one to monitor the suppposed Barrets and gastritis, what can happen to me? I have heard of cancer and bleeding of the stomach.  I am really scared. Thanks

[yoshi]

the doc who performed the surgery,what does he have to say??

[LukeL]

Not to scare you but have you had a CAT Scan done after the surgery?

There is a very very  small chance  an insturment or some surgical material (sponge, gauze etc) was left behind after your surgery. This may be worth looking into even though its a long shot at best.

[JANIEL]

I went to that surgeon a few times after the surgery and he just sent me to a GI.  Then he took his files and left town. I heard he may be somewhere in Indiana.  I have had 5 doctors and they all can't agree with eachother. They do say that it is Gastroparisis, bile gastritis, Barrets and Sphintor of Oddi disfuntion. They just can't get the pain to stop. I hurt so bad to eat. They did more blood work and an MRA the other day. Liver panel is at 121 instead of the normal 0-50, but he said that is nothing to worry about.  Then he told me that there is nothing more he can do for me, and to go to a pain clinic. Pretty draining. Thank you so much for your questions. I am glad and sad at the same time there is someone out there.

[yoshi]

is there any way to scan your stomach and see if there is something which should not be there??

[tuff case]

I had my gall bladder out in 1999.  In 12/02 I started having nausea and extreme abdominal pain. They started with the ultrasound of the liver and pancreas then a CT Scan of abdomin (abdomen), then I had an ERCP for SOD and they cut the SOD valve which should have relieved the pain and nausea. However it did not.  Then I had an internal ultrasound of the pancreas.  Still no relief so my GI sent me to his mentor at University of Chicago for another ERCP only this time they could measure the pressures of the SOD valve and the pancreatic valve.  He needed to cut both valves.  With the second procedure they put in a temporary stint that cause me much pain and was removed a couple days later.  After this the abdominal pain subsided except that I would get a sharp pain for a few second and then it would go away this still continues.  I also put in a referrel to Mayo which was accepted however they put me on a 2 year waiting list for their Gastro department.  Are you not able to get into see another GI at all?  In doing research for possiblity as to what the issue was and in speaking with my GI he had said that you can pass gall stones and they can get into the pancreas and cause severe problems.  The Dr. that left town was he the one that preformed the Gall bladder or stomach surgery?  The test you said you just had done and "MRA" did it show anything?  No sure where you live but if you would like to see the Dr. that I went to see at UIC I can provide you that information.  He is the "Director" of the department, my GI is also there once a week as an Associate Professor.
I know what you are going through just don't give up hope.
Amelia

[JANIEL]

Thank you for getting back to me. I am in Madison Wisconsin. Only a couple of hours away from Chicago. I have gone to all of the the GI docs here and they have given up. I had to beg to just get a little appointment with the last one. He did the MRA and of course came out negative, so that is why he is sending me to the pain clinic. He said that is the only thing left. I asked him to do another ERCP and he said no. I have had 2 of them and they had to cut both times. I also had a stint in and same as you, two weeks later they had to take it back out. I was miserable. Felt better as soon as they pulled it out. I really think that it has to do with the SOD and also all the bile in my stomach. I am so scared what kind of future we have if no one will find the cause of the pain. I am only 95 pounds and they won't reverse the stomach surgery either. They took my intestine and attached it to the bottom of my stomach to help drain. Well, that obviously works, but there is still damage.
I would love the name and number or help to get to someone even if I have to go to Chicago. My email address is nellie_1032***@****  Thank you so much for being out there. Keep your chin up.  I will be thinking about all of you.

[SYLLIE]

Hey everyone.  It's been a while since I've posted anything on this site, but I do have something to tell ya.  I finally found
a website that mentions something about during gallbladder surgery they actually put air in the stomach to bring the organs to the surface. Well, some of the pain I feel is because of that
air that still lingers around. And I had mentioned before that if I cough I feel better. It's because I burp after I force myself to cough and I have INSTANT relief of the feeling that I'm still having a gallbladder attack!
And I also figured out more stuff that actually makes the pain happen. First of all FRUIT JUICE kicks my butt when I drink it on an empty stomach.  Second, when I eat pizza or something
greasy, I have that stomach cramping within a half hour to an hour, and man I gotta RUN to the can. It's the kind where you sweat and your stomach really hurts... Yeah. It's ouchy.
I'll still eat pizza the next time because I'm a glutton for punishment!!!!!
The pain has gotten alot better, though.
Hope this helps even ONE person!!!

[nickodemus]

well jen your not alone,a lot of people are discarded pushed aside,only because the medicalworld has got there butt up their nose and i mean deep in their xxxxx.i hate the kind of humanity that has become doctors most of them are just a piece of xxxx.docs are overrated they think they are like gods but we all know what kind of *** holes they really are!

[mydragonslady]

My email address is b3c0(at)wowway.com for those who are interested in sharing research resources.

For unusual stool contents, a professional colon Hydrotherapist might be able to at least identify them and steer you in the right direction for assistance.  Do some research on colonics before trying though, because some places don't use disposable materials and backwash can occur with the wrong equipment.  If you have to travel out of your area, it's worth the effort even for overall better health, so make time and take the treatments as professionally recommended.

Example of why:  It's my understanding that mucous coils or other characteristics indicate certain foods are not processing well.  This could be due to an allergic reaction or deficiency that can be treated by changing your diet with the help of a professional Nutritionist who works to alleviate allergies or deficiencies through diet.

Find organic whole fennel seed.  It must be organic to prevent additional agitation from chemicals and pesticides.  Chewing a 1/8 to 1/4 teaspoon of fennel seeds until they become pasty with saliva relieves gastric pains quickly.  Chew it as long as possible for the best result.  Ground fennel seed may not be as effective.  Chewing fennel seed is best used for temporary purposes such as when you know you've simply overeaten, or consumed some foods you that don't go well together.  The enzymes help digestion move along rather than become bogged down.  Anything that persists should be checked out by a professional.  Take responsibility for your health, because no one else will.

If high blood pressure is not a concern, a 1/4 to 1/2 teaspoon of organic baking soda without aluminum dissolved in a cup of body temperature water can help gas escape effectively.  Active ingredients for Alka Seltzer are:  "Aspirin 325 mg, Citric Acid 1000 mg, Sodium Bicarbonate 1916 mg".  Baking soda is sodium bicarbonate and minimal research will explain why it's so effective, even without aspirin or citric acid.

Also, for those who are unaware, chiropractors can often help where a regular MD leaves off.  Try to find a chiropractor who works with a naturopath for the best results.

Most of all, don't believe everything you read or hear.  Question everything in a positive way and investigate all possibilities.  Be relentlessly proactive about looking out for yourself.  Most doctors are biased by pharmaceuticals in training and practice, even those who mean well.  I've found this out the hard way, over many years and spent most of my life in unnecessary pain.  After being misdiagnosed repeatedly, I was finally left to my own wits.  So much damage has been done in ignorance and by keeping patients sick to pay bills, appease greed by insurance and pharmaceutical companies.  But many people, who have been literally ill treated by the medical community, are healing themselves through self-education and exercising self-discipline that medications discourage.  Sad to say, we are growing exponentially out of necessity.

All that said, these forums and others like them will become a major factor in helping us help ourselves.

[nickodemus]

yeah i dont know how many doctors read this and reply to people and there problems,but let me tell you doctors,what are they teaching you in med school i have been suffering for more than 6 years with abdominal pain i have gone from doc to doc looking for an answer but all i get is a bunch of bull,they give me test after test and each doctor tells me something different,they give me the meds they think will help and send you on your way but if the meds dont help here try another kind,and if that dont help they kick you out,i will tell you the medical field is a huge waste of money i know i have been to many doctors and they just ask you questions and in 15 minutes your done and the next victum is sent in.man i have seen it with my own eyes the are ripping the people and the government off like you cant believe. we have to do something about this to learn about the body and its parts is not that hard to understand,so why are these *** wipes paid so much for doing so little they sit on there *** and ask you a couple of questions and bingo there goes a couple of hundred dollars out the door wow what a rip off.