Appendix & Kidney removed but still in pain????

[Feemo]

Hi

I've been experiencing right sided mid quadrant pain for 18 months.  The pain is like a sharp stabbing pain and can last from 5 minutes to a whole day/night. This pain is also accompanied with a crampy pain in my rectum or similar area (not sure what's up there!). My periods have become very heavy although regular as clockwork and I suffer from bloating, changing bowel habits etc.

Numerous investigations have been carried out, a CT scan revealed I had appendicitis and a mass inside my cecum.  During subsequent colonoscopy the mass was prodded and it burst, it contained a stack of puss so the mass was removed and was later found to be my appendix which had intussuscepted.  Pathology confirmed there was nothing "dangerous" going on there, no cancer or endometriosis so it was unexplained as to why this happened.  CT also revealed that I had kidney stones.  Further tests were done and it was discovered that my right kidney was very small, scarred and only working 11%, it also contained numerous small stones.  So it was suggested that this may be the cause of my pain, my kidney was removed 6 weeks ago laparascopicaly and surprise surprise the pain is still there.

I'm not sure where to go from here...I'm beginning to think my doctors think I'm faking it!!!  I'm in such pain, tired all the time and generally feeling run down and losing interest in everything.  I had my son 6 years ago and believe C=section resulted in my womb/uterus being torn badly.  Could I have scar tissue etc this high up?

If anyone can give me any ideas of where to go from here I'd be so grateful.  I'm at my wits end, how many more bits are they going to cut out of me before they find the source of this pain?

Thank you in advance.

Fiona

  

[Banned1]

Hi Fiona:

If I were in your shoes, I would ask for an Endoscopic Ultrasound.  It is much less invasive than an ERCP and can identify problems in the digestive system.  It is the new gold standard test for abdominal problems because it can identify issues at the microscopic level.  Other similar tests rely on the physician's eye.  This test is done under twilight sedation in most places and is similar to an upper endoscopy.  Your symptoms scream Sphincter of Oddi Dysfunction/Pancreatitis to me.  Here is a link for more information: http://www.medicinenet.com/endoscopic_ultrasound/article.htm.  The most important thing is to find practitioner who is highly skilled in EUS!

You've been through SO much!  You deserve some answers.  I wish I had known about the EUS at the beginning of my illness.  Sadly, I'm still undiagnosed after two years and numerous surgeries and procedures.  I sincerely hope you get answers swiftly so you can establish a plan of treatment and get on with life and living!

All the best,

Sam

[Feemo]

Hi Sam

Thank you so much for the information.  My gallbladder was investigated but apart from the walls of it being slightly thickened there were no abnormalities, stones etc.  I had 2 ultrasounds to rule anything out as I was sure that's what was wrong myself but apparently not.  I'm beginning to think that the problem is scar tissue or bowel problem so might ask for a repeat colonoscopy to see if anything's changed since the removal of my inside out appendix...its worth a try!

Thanks again for your help, I'll keep you posted!

Fiona x

[Banned1]

Hi Fiona:

It's so frustrating when you are at your whit's end and you feel as though your doctor's aren't listening, believing or understanding what's going on.  With your history, I wouldn't be surprised if you had scar tissue causing pain.  Have they investigated your gallbladder?  I'm not a doctor and know next to nothing about medicine but often right-sided pain is related to gallbladder problems.  Here are some references that might help you, if you're interested in doing your own research:
Digestion and GI Health – Your Gallbladder – http://www.womentowomen.com/digestionandgihealth/gallbladderhealth.aspx
Cholecystitis – http://gastroresource.com/GITextbook/en/chapter13/13-2-pr.htm
Gallstone Removal – http://www.surgeryencyclopedia.com/Fi-La/Gallstone-Removal.html
Management of Common Bile Duct Calculi – http://www.surgeons.org/Content/NavigationMenu/WhoWeAre/Regions/QLD/080506_CWon.pdf
Society of American Gastrointestinal and Endoscopic Surgeons (SAGES) – http://www.sages.org/sagespublication.php?doc=PI11
Functional Gallbladder and Sphincter of Oddi Disorders – http://www.romecriteria.org/pdfs/p1498FuncGallbladderandSOD.pdf
MERCK – Gallstones – http://www.merck.com/mmhe/sec10/ch140/ch140b.html
Gallstones and Gallbladder Disease – http://adam.about.com/reports/Gallstones-and-gallbladder-disease.htm#adamHeading_4
GALLSTONES (Cholelithiasis) – http://www.rxmed.com/b.main/b1.illness/b1.1.illnesses/GALLSTONES%20(CHOLELITHIASIS).htm
Cedars-Sinai – Gallstones – http://www.csmc.edu/5344.html
National Digestive Diseases Information Clearinghouse (NDDIC) – Gallstones – http://digestive.niddk.nih.gov/ddiseases/pubs/gallstones/index.htm
Gallbladder Attack – http://www.gallbladderattack.com/gallbladdersurgery.shtml
Pathology Outlines – Gallbladder – http://www.pathologyoutlines.com/gallbladderpf.html
Diseases of the Gallbladder and Bile Ducts – http://rezidentiat.3x.ro/eng/litbiliaraeng.htm

God bless, Godspeed and good luck, Fiona!  You are your own best advocate.  You KNOW that you have pain.  I believe you 100%.  Don't accept anything less from your medical team.  If you need to find a new doctor, do it.  Your health care team should be supportive of you, not doubtful.  You are in my thougths and prayers.

All the best,

Sam