Where can we find the real Dr House??

[hawkeyemom]

My daughter has had severe abdominal pain which has at times been intractable since Feb 2006 - she is now 26 years old. At first they thought it was an ulcer, blood work came back negative.  Since then, possibilities have been Crohn's, Lupus, Behcet's, irritable bowel, or gallbladder disorders, among others.  She has undergone several colonoscopies, endoscopies, wireless capsules, CTs, lupus panel, slit lamp test, and both regular and bizarre blood work-ups.  She has received trials of steroids, nortriptolene, 6MP, and now, lupron.  She has been hospitalized for her pain.  She is under the care of a psychiatrist and has been evaluated by him, but he acknowledges she is perfectly sane and any anxiety and sleeplessness she experiences is strictly due to her extreme pain level and the inability of the medical community to identify the source of her problems. I have spent a couple of nights with her and have awakened myself due to the moaning and painful jerking that she undergoes while in deep sleep.  The pain has increased over the past 24 months, but the location of it has remained the same.  Her UCLA gastroenterologist now has her on neurontin, which has taken the edge of somewhat during the day, but it doesnt always allow her to sleep at night, even with prescribed sleep aids - and a heating pad which has possibly left her scarred for life as her abdominal skin is now completely mottled.  She has had migraines since this began which is now under control with topomax.  The reason the UCLA rheumatologist considered Behcet's was that she has had a history of systemic canker sores since she was 14 months [yes slightly over 1 yr] old - which ironically have greatly lessened in occurrence since this abdominal nightmare has begun.  She has been exposed to some 'exotic' animals; she's worked with primates but has never been bitten.  She did assist in a necropsy of a sea lion while working at an animal facility.  The only abnormal test/procedure results - aside from her nonending pain -  include an elevated ANA 1:160 and three weeks of no pain in Dec of 2006 following a laparoscopy.  The gyn performed one looking for signs of endometriosis and found none.  What he did find were a few "minor" adhesions, which  were hiding her appendix.  He scraped the adhesions, moved the appendix down [but left it there] and disposed of the scrapings.  She has never had any prior surgeries, abdominal trauma, nor inflammation that we are aware that could explain the source of the adhesions.  We always assumed that her painfree weeks were due to the removal of the adhesions.  Is it possible that the untwisting of her appendix was the actual cause of her pain relief?  Are there any disorders of the appendix that can cause this type of prolonged agony without showing up on bloodwork? Is there anyone out there that has any other suggestions as to where to look next??  After nearly two years, her anxiety level is now increasing drastically.  I myself cant imagine being in that kind of pain.  She has placed the rest of her life virtually on hold, having to quit both school and work.  Any advice or suggestions at this point would be considered and appreciated.

[Casmige]

Meckel's diverticulum

It's a rare disorder.

it's taken the life of 2 of the Bee-Gee Brothers.

It's Congenital & prone to "Flare-Ups".

The Symptoms Fit & the lack of Most Doctors of gastroenterology to even consider this also "Fits".

i4h6y4

[hawkeyemom]

Is your daughter better now that the appendix has been removed??
Daughter went to pancreatic specialist Friday who said her pain was simply too low to be her pancreas and she has no back pain symptoms [actually today she has - but this is not the norm...] The docs say - no way is this her appendix because their push in the belly "test" doesnt create a high pain reaction.  But from your posting, it seems as though your daughter possibly didnt have a positive appendix test either.  We were told her plexxus block was primarily diagnostic but had potential of relieving pain anywhere from a few hours to over a year.  This morning her pain is on the upswing

[hawkeyemom]

I'm not really familiar with this kind of 'posting' the first time Ive ever done it...  sign of true frustration!!
before I continue can someone tell me if there is an easy way to track you own posting to find comments?? do you have to go through each page until you find it??
comments to comments -- daughter was tested for celiac [bloodwork] twice and they came back negative, although I agree the symptoms all fit, except her pain is no worse with more wheat products or less without them.
I have thought it could be her appendix and would love to find a doc that would just go ahead and remove the thing....  but, today she saw Joshua Prager - a top pain specialist who performed a celiac plexxus block and was able to "narrow" the source [in quotes because I still believe there are too many possibilities there...] to visceral organs-pancreas, gb, stomach....  ok...!!  the pain level went from a 9-10 down to a 3 after the treatment.  She hasnt been there for about a year.  She was extremely pale and obviously in pain before the procedure, now she looks a little jaundiced to me... anaesthesia?? who knows. I asked about the appendix and he felt the location of the pain was higher than the appendix and said that the typical 'test' for appendix pain is to press down deeply around the navel and release quickly.  This did nothing to her [after the procedure]  He has advised a consult with a rheumatologist and pancreatic specialist within the week...  here we go again

[toonzee]

My daughter, 20 yrs old, has been hospitalized twice in the past month for lower right abdominal pain.  Her primary dr. believed it was "chronic appendicitis" but everyone else dismissed it.  She had an ultrasound that showed "fluid" in her lower right quadron but they could not say where it came from, except from an ovarian cyst.  She is on the pill, and the gyno examined her during each hospitalization and ruled out any gyno issues.  No one believed her pain was that bad and discharged her the first time with no answers and "undiagnosed fluid" in the lower right region.  This past hospitalization was for the same pain and the E.R. dr. was going to discharge because all his tests were negative for appendicitis.  My husband and I were furious because she was in a lot of pain and they totally ignored her pleas for help.  Finally, they did admit her.  My daughter had a colonoscopy to rule out Crohns disease, which they did and had exploratory surgery and removed her appendix, which "appeared" normal but he would send it out for testing.  
     The biopsy on her appendix showed it was infected.  So dont give up.

[Jaybay]

Something tells me she may have chronic appendicitis and the adhesions have probably come back.  From everything you wrote, those are the 2 things that really jumped out at me.  Of course, I'm biased because adhesions have been the bane of my existence for over 10 years.  :-)  

There is a reason the initial scar tissue formed.  Since it was around her appendix, it is entirely possible the appendix was in the early stages of inflammation, and to the surgeon's eye, didn't look bad enough to remove.  Believe it or not, there are many doctors who don't believe chronic appendicitis is a real medical condition.  They think it's either healthy, or needs to come out.  End of story.  I had a similar experience with that myself.  I'd already had an infected gallbladder taken out along with a ton of adhesions all over my small intestines.  A few months later, I started having similar problems, only lower down, but still not even close to the appendix area.  I had to beg my surgeon to take a peek with the laparascope, and did he ever have egg on his face!  After all the tests, ultrasounds, ct scans, you-name-it, came out normal, there was my appendix ready to rupture, and you guessed it.... more adhesions.  

In some patients, adhesions can be the gift that keeps on giving.  Just because they've been taken down once, doesn't mean they won't come back.  I also got them from having endometriosis, which is notorious for causing bowel adhesions.  Intestines don't appreciate being restricted in any way, and that's exactly what adhesions do.  As CalGal pointed out, some people can loosen up adhesions with massage-type therapy.  Sometimes a good GI doc can bust them loose internally via a colonoscopy.  Others, like me, have to wait until we're fully obstructed and have yet another surgery.

Enough about me though.  What other symptoms does your daughter have besides pain?  Any constipation, nausea or vomiting?  Does anything make the pain better; does anything in particular make it worse?  Has she seen her gynecologist?  This may turn out to be related to her ovaries, or even endometriosis.  Any irregular or heavy periods?  

By the way, lupron is commonly used as a treatment for endometriosis by throwing a woman into menopause.  It is HORRIBLE stuff.  I used it for 2 of the 6 months my doctor recommended and said forget it.  Never again!  Within 20 minutes of the first shot I had hot flashes that were unbelievable, and turned into a nuclear, radioactive b***h from H**l.  :-)  It also trashed my short-term memory for a good year after the last injection.  Come to find out later, the mentation issue is a common complaint among women who have had lupron.  It was originally approved by the FDA for men with prostate cancer, and once it was on the market, could be prescribed by any doctor for any reason.  Thanks, but no thanks.

It really gripes me to no end that people in chronic pain are sent to a shrink.  I see a pain psychologist, but that is part of my therapy for dealing with chronic pain - not to prove to the rest of the doctors that it's not all in my head.  It's always the women who are forced into a shrink's office when we say we hurt.  But again, I digress.  :-)

You have a few stones left to uncover to get to the bottom of your daughter's pain.  Don't let the docs give you No for any kind of an answer.  Something tells me she needs an exploratory laparascopy to both come up with a diagnosis, and maybe even a solution.  If every last test has been run and you still have no answers, you could always ask for a referral to a surgeon as a last resort.  Again, I am biased because every time I've had something wrong in my abdomen, it's required surgery.  Tests are not always accurate or reliable.  At some point there will be a doctor who will listen to your daughter and evaluate her symptoms without reyling so heavily on tests.

[CalGal]

Is there anyone with celiac in your family?

[hawkeyemom]

her pain is deep and covers a 3-4inch "band" across the front of her abdomen over the belly button.  She has had lower abdominal pain lately, but only since she began Lupron injections, the last of which she had this Thursday.  I have not looked up Jean-Pierre Barral yet, but will - along with the technique.  Thanks for the suggestion.  We are following up on all of them!

[CalGal]

Is there any specificity as to the location of her pain? I know you said 'abdominal,' but that takes in quite a bit of territory? Any bowel habit changes? Any dizziness? Besides the canker sores, any rashes?

If you have a belief that this might be adhesion-based, there are people in the LA area who work with a form of visceral manipulation (based on a French Osteopathic technique) that might be able to check your daughter and perhaps free up some restrictions. You might want to look up Jean-Pierre Barral. I think there was an article in Time on the gentleman and his work about a year ago (?)