Recent surgry my 16yr old - 5% HIDA scan . . no stones

[ChitChatNine]

My daughter was in the hosp for 8 days as it took 5 days to pinpoint her pain as all her tests were normal .. many ultrasounds the past 2 yrs, bloodwork, etc., etc. until she got so sick this go-around that she passed out and was admitted to the ER to r/o appendix.

Her appendix could not be seen on the CT Scan bcz of thickening of the Ilieum wall!!!  After a team of GI specialists, Surgeons, Peds and Cardio's kept assessing and doing tests they did a HIDA scan which revealed only 5% function of gallbladder (no stones!).  She was having a severe gallbladder attack for 5 days in the hospital which they didn't want to maks with meds bcz of inability to r/o appendix!

Bottom line is that she is slowly getting better and all her pre op symptoms are gone!!!! No more severe nausea which led to dehydration, no more pain, etc.  Her gallbladder was distended and full of bile when they took it out and the tubes were only 3.0mm in stead of 6mm thick and were wayy too long and probably like that from birth.  The inside showed signs of inflammatory changes as we await patholgoy report.

She had Billiary Dyskensia (?sp) at the age of 16 and now has an answer. No more reflux .. Prevacid only masked the true cause it now looks like.

She will continue to be followed by Ped GI's to r/o Crohn's, IBD and EEO bcz of arthritis history, severe allergy to nuts, plums and latex, etc. and the inflammation of the intestines but the scope while inside for gallbladder removal showed normal, healthy intestines by vision so we await our upcoming f/u appt with Pedi GI on Feb 11th to assess her symptoms and see if any endo or colonoscopy are in line or not at that time .... they tested stools @ hosptial as a repeat lab as in Aug they were all negative.

They know now the gallbladder made her so sick and only 5% attributed to the GI symptoms.

Any thoughts, advice, etc.  Anybody else out there have both these things going on and undiagnosed properly for 2yrs and brushed off as "probably IBS" and stress .. my poor dd has missed so much school with mini episodes that went away in 1.5days but this one took hold and took the cake YEAH!!!!!!!!

I am a long time member of the Thyroid board and I have GALLSTONES and next attack out mine comes ..... they think it is hereditary and I crinched when they asked my history as mine should have been removed 9 yrs ago when I threw a stone during a C-Section delivery and they said they couldn't go back in so soon and I played the diet game since then and have been no symptoms for 2 yrs but next time OUT IT COMES and my dd will be MY ADVOCATE LOL!

Cheryl (gallstones, kidney stones, thyroid cancer '07 very small, encapsulated, melanoma gone .. early, stage 1 '07)

[ChitChatNine]

Thanks so much .. yeah, something could have done a flip double over with all the pain she was in and inordinate am't of stooling before we reached the point of the ER .. it was 3 days of not being right before she dehydrated, etc.

Thanks again,
C~

[CalGal]

Thickening just doesn't come and go - it takes awhile for tissues to thicken. Perhaps something got 'doubled over.' But I'm glad to hear that your docs are following up. That''s important.

If there is any inflammatory pattern in the small bowel it would probably be due to Crohn's if it were an IBD, rather than to U.C which is a typically a problem found only in the larger intestine.. But changes can be found with Celiac disease in the small intestine so it's very hard to know without having test results to look at and tissue samples to examine. So I'm glad you're gathering all the information and having it reviewed. That's important.

I hope she continues to improve uneventfully.  

[ChitChatNine]

They are talking repeat CT Scan, endo/colonoscopy, etc.  But then the surgeon said his pics show it to be normal looking and wait 3 mos to do anything unless symptomatic?  Can this come and go INFLAMMATION changes like that in thickening?

Luckily the GI group we are going to followup with is very in tune with Crohns, IBD, EEO, etc., as the lead Doc is trained out of Mt. Sinai in NY .. my other child at birth had a large intestinal duplication cyst removed via bowel resection and we used this group and they were fabulous.  

They said this inflammation could be just an anomoly of the intestine, could be a flare from her being so ill with the stool problems (loose) on/off for 2 yrs, could be an error on the CT Scan as they say it isn't 100% or could be ulcerative colitis I think they said?  The one thing the said is that it is NOT viral.  I assume labs are negative for stools and will call as today is a week and done in-patient.

The surgeon said it all looked like 100% normal healthy intestine and no inflammation so that is odd the CT Scan showed enough to block view of the appendix ?  But a CT shows cross sections, right? and would show thru the thickness while maybe the outside shell looked normal and not inflammed outwards ?  I don't know but I am gathering ALL the results and disks of tests and forwarding to the new group.

they did say her odds lessened dramatically of the IBD, etc., once the gallbladder problem was found .. at first they thought her initial pain was all from the intestines and feared the worst for her.

her sed rate was 23
all blood normal and all urnine/minerals in blood normal and also proteins normal I was told.

Thanks!

C~

[CalGal]

Please make sure you bug the docs to follow up on the thickened wall in the ileum. Thickening should not be found in that area of the small intestine and it is not something that would typically result for any knind of GB issue.

Thickening can be found in forms of inflammatory bowel conditions. And in those with Crohn's problems iwth GB issues seem to happen more frequently.

[ChitChatNine]

She lost 30 lbs from this type of episode in Aug and then another 8lbs in October and this episode cost her another 14lbs in the hospital ... but the expect she will easily gain back the healthy portion of the weight loss as she was a bit over in the beginning but they think the initial 30 lbs in 3 weeks from the onset of these symptoms w/nausea being so bad in August may have been the trigger for the gallbladder to really decide to go sluggish and wack out!

Cheryl