Constant abdominal pain

[without hope]

I am a 39 year old female with incapacitating abdominal pain.It initially began suddenly when I was 24 with excruciating cramping pain in my upper abdomen, a fever and loose stools.  Within 5 days the other symptoms resolved but the pain settled on my right side.  It continued to get worse and I sought medical help.  I ended up with a total GI series, bloodwork,CT scan MRI, colonoscopy and finally a laparoscopy.  The only abnormality found was adhesions between my colon and the anterior abdominal wall, despite no prior abdominal surgery.  No endometriosis or Chron's which I was told were the main culprits of abdominal adhesions.  The pain lasted for almost a year nonstop and I had to stop working (I am an RN}.  Eventually it just went away and did not reappear for 8 years when I was 16 weeks pregnant with my third child.  Again the pain was in the same spot {I would describe it like the worst sore throat you can imagine but in my abdomen--worse on the right side).  I had to be hospitalized several times during the pregnancy for pain control and I could not eat because this escalated the pain out of control.  The baby was delivered at 37 weeks by C-section and thankfully she was fine.  Again no pain relief and another set of GI tests and blood work.  This time the doc could not advance the colonoscope, but the barium enema was normal.  This time I had lost 40lbs because it hurt so much to eat.  Still no diagnosis-only a referral to the pain clinic with no relief. Again after a year I had a complete resolution of symptoms this time for 5 years until they reappeared last summer. I have been in constant pain for 9 months but only recently went to the doctor because I felt there was no use.  The pain is exactly the same, it increases when I eat I have had to stop working and I keep an ice pack on my abdomen all day.  The only new development is I found out that my hbg is only 8.6--it has always been normal until now--sed rate, WBC, platelets were all normal.  My periods are light and I do not have any apparent bleeding to account for this, I consume my fair share of red meat.  Recent tests for celiac sprue, h.pylori were also negative.  I have no pain control and no life (I used to work full time, have run several marathons and was active in my kids lives.  Have you heard of anything like this?  I do have many relatives with Chron's and I am Jewish--is it possible for it to NOT show up on a barium enema (with visualization of the illeum along with an upper GI and a small bowel follow through?)  Is there any point in repeating these tests--I found them exceedingly painful.  My current GI says since my WBC and sed rate, and albumin are normal that active Chron's is unlikely.  Meanwhile, nobody will treat me because they can't find objective proof.  Is there anything you can suggest that this could be?  I am so desperate to be out of pain  the only time I have pain relief is when I am asleep and that, too is not easily achieved. Any ideas?

[Kevin Pho, MD]

Have a low blood count in association with your symptoms suggests a possible source of bleeding.  However, you have already had a comprehensive evalution, including the CT scan, MRI, colonoscopy, laparoscopy etc.  

If you haven't had an upper endoscopy, I would certainly consider this.  If there is a source of GI bleed that is still undiagnosed, I would consider more specialized testing - such as capsule endoscopy - to further evaluate the source of bleed.

Yes, it is possible that Crohn's may not show up on the barium tests.  Again, capsule endoscopy may be helpful.  There are also several antibody tests that can evaluate Crohn's disease. These would include antineutrophil cytoplasmic antibodies (P-ANCA) and anti-Saccharomyces cerevisiae antibodies (ASCA).  People who are P-ANCA negative and ASCA positive are more likely to have Crohn's disease.

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.

[VegasVic]

Hello
I have had similar pain and have had the run around- finally they did a gall bladder test and found it wasn't emptying properly which may cause right sided pain- feels like a balloon is inside and going to pop-
had the gall bladder removed but am still experiencing the pain...not sure if you've had your's tested-might be worth it.
My father in law had similar problems- had surgery and feels great.
ALso I've been reading about something called a telescoping colon-might be causing pain? And acute appendicitus- have you had it checked? You never know..
good luck!

[kazod]

Just a bit of info for you..I was finally diagnosed with crohn's after a lot of run around, a lot of pain, weight loss and fevers. One test would show something and one would not.  The test that I found with my situation to be least reliable was the small bowel follow through.  My blood tests always come back normal despite severe active crohn's.  If they went by that then I would be totally healthy (which I am not).  There are other tests to check for inflammation in the large/small intestine- if I had the name of the test I would give that to you.  (If anyone knows what I am talking about, it has to do with blood being drawn then certain part of blood is put back in and they can see this part of blood go to inflammed part of body).  You mentioned that he could not continue with the colonoscopy- why is that?  I am not saying that it is crohn's..I can only speak from the experience that I have had.  I hope that it is figured out for you. Take care.

[without hope]

Thank you for your insight.  Can you tell me which test you had that was finally diagnostic?  The doctor was not sure why he could not advance the colonoscope but he was sure he would find Crohn's so he rushed me in for an immediate barium exray when that was negative he gave up.  Thanks again, hope you are feeling better.

[kazod]

The first CT scan I had showed something suspicious, barium showed nothing, blood nothing, colonoscopy (they were able to make it to the terminal illeum)and do biopsies- this is how I was diagnosed.  They were about to stop the colonoscopy because I had tremendous pain around the loops of my large intestine however they did make it through (said I have sensitivity in that area, no crohn's in large detected).  I would suggest having another colonoscopy so at least you can rule crohn's&colitis out.  Take care

[sissina]

All this is so scary and frustrating!  I've been in pain for 6 weeks (mostly flank pain on the right lower side but also general abdominal pain & nausea and small trace of blood in urine) I went through all kinds of tests.  All they found was a cyst in my kidney (doc said that wouldn't hurt much) OBGYN suggested laporondoscopic surgery, convinced to find endometriosys, GI doc dismissed me for lack of dignosys, PCP simply said..."I don't know what to tell you" and I'm still in a lot of pain, sometimes it goes down to my right leg and it burns!  I also have GERD (have been on Nexium for 3 years) and IBS-C.  Does anybody has any suggestions on where to go next?? Please help meeeee!!!!!!!

[without hope]

Have you had a laparoscopy to look for endometriosis?  It can manifest in so many different ways.  Does your pain cycle with your period at all?  There is a lot written about this disease which mostly causes pain and is often extremely difficult to diagnosis.  MaryLou Ballwig the founder of the endo association and has written two excellent books on the subject.  It is scary, how quickly doctors dismiss us when they can't find an immediate answer. Take Care.

[brama]

kazod

I too have been diganosed with Chrons.  What has helped me is a change in diet.  I am off wheat and lactose.  But unfortunately my pain has come back.  I am very gassy.  I take Pepcid and Maalox and when it is severe I take Ibuprofin.  I am considering surgery as the Ileum is affected.  Have you heard anything regarding surgery?

[sissina]

Thank you for the tip: I'll search that author!  My laporondoscopic surgery is scheduled for March 19th and yes it get worst during my period but to be honest, I don't even know what's worst anymore...I could scream some days!  Did they determine why you had those adhesions they found between your colon and the anterior abdominal wall? When I think about it that's the perfect way to describe the pain: it's almost as if my kidneys were "glued" to my back...?!  Do you have kidney pain as well?  Have you tried going to a research Hospital (Hopkins, Mayo Clinic..)

[kazod]

I have not explored surgery at this point, even though it is bad.  What meds have you tried?  I have tried a couple but have had reactions to them so at present I am waiting to see what will be tried next.  My diet is extremely restricted (not fun at all) anything with salt, fat or fiber will make me flare..so that rules out all the flavor!  Some advice I can give (if you like) is that I understand that NSAIDS (advil etc) can irritate IBD-may cause bleeding/flares.  Also about the surgery, only if absolutely needed as it is not a cure, chances are very high that it will come back at the resection site within years and the more surgeries you have , well, it can lead to other types of problems with absorption.  Take care.

[without hope]

Good luck with your surgery.  Nobody ever discovered why my abdomen (colon specifically) was covered with adhesions, they only said it could only result from some kind of imflammatory process.  Endometriosis can be extremely hard to find (look up Dr. Redwine's work extremely interesting--he is a leading expert in the field and when I was 25(14 years ago I wrote him a letter and he actually called me and spoke to me for over an hour on the phone at no cost).  His wife has endo which led his passion, but he told me he has found endo in women who have been operated on as many as six times but the surgeons said they saw nothing).  In my case because the adhesions were not in my pelvic area he was less sure that he would find it to be endo he gave it a 10% chance and he was located in Eugene, Oregon--and I had no health insurance--couldn't work etc..  I also had a major flare up during one of my pregnancies almost unheard of for endo-because pregnancy provides hormonal protection-thats what led me to rather suspect crohn's the other cause of adhesions to form on an unoperated abdomen.  Yet, I still have no answers and am not taking any medications ibuprophen which is often very effective w/endo makes my pain worse. Hope you will find an answer soon I'm not sure which is worse constant pain or not knowing why.

[brama]

I am scheduled to see a Dr. at Mt. Saini regarding surgery.  They feel there is scar tissue and is bleeding and the anti-inflammatory meds are doing nothing.  Thanks for the reply.  Will see what happens

[sissina]

I'm back to work after my surgery.  They found lots of ENDO everywhere, just like you said, especially around my bowels.  Doc said she couldn't remove it all and it has been there for a long time apparantly.  Now I'm on LUPRON for 6 months.  I read HORRIBLE things about this drug...have you tried it or heard of anybody that did?!!  I'm tempted to get off of it after what I've heard!!!  How are you feeling?

[without hope]

HI,  

I am not at all surprised that they found endo.  I have read more on this subject than any other.  I have heard a lot of negative things also about Lupron and virtually all of the endo drugs.  The absolute best treatment is to remove it surgically.  It is imperative that you educate yourself because not all doctors are skilled at identifying the many different appearances of endo.  The endometriosis association could put you in contact with doctors in your area.  A consultation with Dr. Redwine who is a leading expert and practices out of Eugene, Oregon is another excellent contact.  He only works with women with endo.  Please look into one of the many support services via the internet as enometriosis can be a bumpy road!  Very Best of Luck to You1

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HEY BABE I UNDERSTAND WHAT UR GOING THRU IVE JUST RECENTLY HAD SURG FOR CHRONS ITS A BEAST OF A PROB GOOD LUCK SWEETIE FINDING OUT WHATS WRONG

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