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Old 01-04-2008, 02:10 PM   #1
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Still No HIDA Test Ordered-- HELP!

Hi all,

In my previous posts I have mentioned that I have had less than satisfactory experiences with my GI docs. I saw a new one today, and while he seems to be better than the first two, he won't order a HIDA scan either. He said that my symptoms definitely don't sound like gb symptoms, which I don't understand, because 1) we all present different symptoms and 2) from the websites I've read, some of my symptoms definitely sound like gb to me! From what others have said on this board (Zoe, MindyP), who had low ejection fractions, it sounds like their symptoms were varied and not even identified as gb right away.

The doctor's "diagnosis"-- IBS. Even though I've had no change in bowel function. He said he thinks I have a form of IBS called non ulcer dyspepsia. Which of course, nothing can be done for. He also said that my diet was pretty lousy-- that it was too high in carbs. He wants me to eat low carb and high protein for a few days to see if that helps. I'm supposed to go back in a week.

On the upside, he did say that once we see how I don the high protein diet, he'll consider ordering more tests-- like a gastric emptying test. He tried to tell me though that my feelings of extreme fullness were from gas, which I just find weird, because I haven't that much gas throughout all this to begin with.

He asked me why I wanted a HIDA scan, and I didn't know what to say. I didn't want to say, "Because I want to rule out any gb problems" after he told me, "I definitely don't think it's your gb." Does anyone have any advice on how to handle this? What can I say to him next week? I want to be persuasive, but somehow when the docs are so convinced that you don't have anything, it's difficult to try to convince them otherwise.

Has anyone benefitted from a high protein, low carb diet? I just ate a high protein, low carb meal, and I definitely don't feel that well. (I ate low fat cheese and deli meat).

HELP!

 
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Old 01-04-2008, 04:04 PM   #2
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Re: Still No HIDA Test Ordered-- HELP!

If it is your gb you just made it worse by eating the cheese - any cheese. Low fat cheese still have plenty of fat in it.

 
Old 01-04-2008, 04:10 PM   #3
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Re: Still No HIDA Test Ordered-- HELP!

Sorry to read this! I would say "I want to rule out GB disease", nothing wrong with that. HOWEVER, I am having symptoms still and they are worsening. I don't think I ever had GB symptoms. I also found out today that a tumor marker blood test are elevated. This is prompting a pelvic ultrasound, which was requested two months ago from whomever read my CT scan. My point, I really don't think my symptoms were ever gallbladder related. I am getting that US on Tuesday.

Are you in pain or discomfort? If it's discomfort I'd try anything, if it's pain I'd push for further testing.

I had NO idea the symptoms I have are also ovarian cancer symptoms until they told me today that the levels that are elevated -CA 125 - can be (but aren't exclusive for) Ovarian cancer. It can also be endometriosis or a few other things as well. At least it's prompting further investigation.

Keep pushing, I believe that being an advocate for yourself is the best thing you can do!

 
Old 01-04-2008, 05:30 PM   #4
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Re: Still No HIDA Test Ordered-- HELP!

[QUOTE=ZoeGirl;3375089]Sorry to read this! I would say "I want to rule out GB disease", nothing wrong with that. HOWEVER, I am having symptoms still and they are worsening. I don't think I ever had GB symptoms. I also found out today that a tumor marker blood test are elevated. This is prompting a pelvic ultrasound, which was requested two months ago from whomever read my CT scan. My point, I really don't think my symptoms were ever gallbladder related. I am getting that US on Tuesday.

Are you in pain or discomfort? If it's discomfort I'd try anything, if it's pain I'd push for further testing.

I had NO idea the symptoms I have are also ovarian cancer symptoms until they told me today that the levels that are elevated -CA 125 - can be (but aren't exclusive for) Ovarian cancer. It can also be endometriosis or a few other things as well. At least it's prompting further investigation.

Thanks for responding, Zoe. I actually had a pelvic ultrasound several months ago and it was normal, except for a harmless ovarian cyst. I had several friends mention that digestive problems are often the beginning stages of Ovarian cancer and urged me to get a CA-125. I thought about it, but I figured nobody would take me seriously. I'm only 32 and my pelvic us was norm al. Plus I heard that in people my age, an elevated CA-125 test doesn't necessarily mean OV cancer, but like you said endometriosis or other things. I guess I don't want to freak myself out about that.But it does make me wonder. I'm glad you are investigating these new problems that have popped up. How did they decide to do the CA-125 anyway?

Are you glad you got your gb out? I mean, I know you had a 0% ejection fraction so essentially your bg wasn't working anyway, but did it provide relief of any symptoms at all? Some doctors believe that there is a low correlation between digestive symptoms and a low functioning gb-- thus meaning its removal would have no effect. But I've also read studies claiming that the recoveries for people with low functioning gb's is as good as for people with stones.

Well, luckily I get to see my doc in another week. Gotta give him credit for being persistent! We'll see what tests he orders. Again, I'm just tired of the implication that this is all in my head. When I asked what would've triggered this, he said he didn't know-- usually it's some sort of traumatic event. I told him about the car accident I was in two weeks before the digestive troubles started. He also asked if there was any strife in my life at the time. I was in a job that I didn't like, but I hate to think that that could've been the cause of all this--especially since I'm in a new job that I like.

I will def. try to be as good of an advocate as I can. I'm usually pretty forward and ask a lot of questions. I went into my doctor with three pages of notes about my symptoms. But these docs can be pushy, self-righteous and hard headed, which makes it hard to be assertive at times. Eiyiyiyiyiyi!

 
Old 01-04-2008, 05:56 PM   #5
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Re: Still No HIDA Test Ordered-- HELP!

I think yes, removing my gallbladder has helped. I would sometimes have pain when eating steak, 3 times out of 10 while I was still eating I'd end up doubled over feeling like I was going to have diarrhea (but I never did). It wasn't frequent but when they said my GB wasn't working it made sense. After my HIDA I seemed to go over the edge and I was sick that entire week unable to eat anything until I got my GB out. While it did take a few weeks I find I can now eat a regular diet and I haven't had one of those cramping episodes since. Mine is a constant feeling of being uncomfortable, with some days of piercing pain in my lower left side, back pain, aches in general and nausea, none of it is related to food but seems more related to bowel movements. The symptoms are the same as the reason I went to see the GI in the first place... so GB removal did relief one problem, but it wasn't a problem I was seeking help for.. I just figured I had trouble digesting steak sometimes I've also been bloated which I was hoping would go away with the GB, it has not.

My GP ordered a blood test for tumor markers because it seems as if I have a bowel obstruction and no one had tested that before. Also my CT scan indicates the enlarged uterus and thickening of the uterine wall (endometriosis?). He just felt it was something that may show something given my symptoms. I haven't seen my GYN in over two years, although I have had an appt made since BEFORE I ever had symptoms, she is just hard to get in to. I am now feeling like I am seeing the wrong type of doctor! I'd think with the symptoms and the duration (3 months) someone at some point would have looked further into this for me. My husband has suggested to the doctors directly that it could be cancer somewhere, his reasoning is my weight loss. So he feels vindicated with the levels from the CA125, even though I told him alone it's not a good screening test. I hadn't heard of CA125 until this afternoon, nor had I ever read up on OC. Abdominal pain can mean SO many things!

btw, I'm "only" 37

and I've been laying on the couch a few hours with a laptop and hovering on these boards as well as researching all the possibilities again! Gosh, just make me better already.

I hope you find answers soon. Good to hear he is following up with you next week!

 
Old 01-04-2008, 06:32 PM   #6
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Re: Still No HIDA Test Ordered-- HELP!

Hey Zoe,

Wow, the areas where you're experiencing pain do sound common to gynelogical problems. Any time I get pain below my belly button that's cramping, I assume I'm ovulating. So it sounds like because of the problems with your bowels, the doctor did a CT scan and that's how they found the thickening of the uterus....which led to the CA-125. Makes sense. I just don't want to ask for a CA-125 out of the blue because I'm afraid they'll think I'm more nuts than they already probably think I am. I hope that if you do have gyno problems, that is endometriosis and no OV cancer. It's good that you're following up and such. And because you're only 37 (anyone in their 30s is still young to me!) I'm guessing it's unlikely that it's OV cancer-- same as in my case, at least I hope!

My mom wondered if because I've been eating low fat, small meals, I'm masking any bigger symptoms I could be having. I haven't even attempted to eat steak since this started! I'm glad getting the gb out gave you some relief-- even if it wasn't originally the problem you were seeking out. Again, the gb may not be my problem, but I know I will always wonder until the HIDA is done. I've even had friends say, "Just pay for it yourself." HA! It's like a thousand dollar test!

If things with this doc don't work out, I'm going to a Naturopath who specializes in digestive complaints. It's not as much money as I thought, and if there's another way to get rid of my problems (assuming it's not gb or something else they can determine), then I'll try it! BTW-- one of my friends who has endometriosis had good results from seeing an acupuncturist, just in case you need an alternative to traditional medical care.

Good luck and keep me posted....

 
Old 01-05-2008, 04:30 AM   #7
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Re: Still No HIDA Test Ordered-- HELP!

Hello ladies,

I was just reading your posts and thought I would mention a couple of things that may help.

Zoe, a thickened uterus usually means that you have to have an endometrial biopsy done. The fear is not ovarian cancer but uterine cancer. If your endometrium is extremely thick the concern is something called endometrial hyperplasia where the cells along the endometrial wall begin to change and may become cancer. Usually a simple D & C will solve the problem and if they inspect the cells and find no cancer then the problem is solved. Yes digestive problems, bloating etc.. are symptoms of ovarian cancer and although this type of cancer is quite rare, elevated CA-125 may signal a problem so your doctor may wish to do a PET scan or something of this nature to make sure that your pelvic area is clear. I am wondering how elevated your levels are though. Anything 35 or under is considered normal. Usually someone with OVCA to the point of experiencing pain and horrible indigestion etc.. would have levels in the hundreds. I imagine that this is not the case with you, right ?

Mizza, have you ever had a full colonoscopy performed for your problem ? Digestive problems can be a symptom of so many things but your colon should be one of the first things they check out. If this is clear then they can move on to other things like the stomach and duodenum etc.. You said they found a cyst on one of your ovaries. What is the size of this cyst and what type of cyst ? (fluid filled or complex with solid components ?). If it is a simple fluid filled cyst which is on the small side then I agree that it is probably a functional cyst which will disappear. If not, then this may be the culprit. Even benign ovarian cysts can sometimes cause a whole gamut of problems depending upon where they are located and what they are touching in the abdomen etc.. You may want to have the CA-125 done anyway, just in case. Have it when you are not menstruating as I have heard that even menstruation can sometimes elevate it. There are also tumour markers such as the C-19.9 which can be done (for digestive organs and pancreas) so you may want to think about this as well.

Ladies, I wish you all the best and hope that you and your doctors can find a solution to your problems. Just remember that if a medical decision or diagnosis does not sit right with you, keep searching for something that makes total and complete sense. Take care.

 
Old 01-05-2008, 08:47 AM   #8
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Re: Still No HIDA Test Ordered-- HELP!

Thanks for the wisdom and advice, estria! My cyst is fluid filled and the size of a grape, according to my doc, who said it was normal in menstruating women my age and in my case, benign. I have not had a colonoscopy, but I will ask my doc about it. I have already had three ultrasounds of my abodmen-- the first which came back showing stones, and the second two which came out normal. I have heard that it's hard to pick up small stones and even sludge in the gb, but even if it's still there, a lot of docs don't believe it's the cause of symptoms. I also had an upper endoscopy, which came back normal. The doc is thinking of doing a gastric emptying study, which I had wanted from another GI doc, so at least that is some progress.

Anyway, thanks for your concern and hopefully I will be able to find answers soon.....

Mizzaj

 
Old 01-06-2008, 11:28 AM   #9
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Re: Still No HIDA Test Ordered-- HELP!

Hi Mizzaj x just thought id say hi ya sorry your still having probs.. lm suffering abit at mo too think its the after effects of xmas had awful pain that started last night on the right side approx half way down ribs under them when doe this end eh? Good luck sorry this is short just to let you know l havnt forgotten ya

 
Old 01-06-2008, 01:06 PM   #10
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Re: Still No HIDA Test Ordered-- HELP!

Quote:
Originally Posted by niecsey View Post
Hi Mizzaj x just thought id say hi ya sorry your still having probs.. lm suffering abit at mo too think its the after effects of xmas had awful pain that started last night on the right side approx half way down ribs under them when doe this end eh? Good luck sorry this is short just to let you know l havnt forgotten ya
Hi niecsey,

Thanks for saying hi and checking in! It's true, when does this end? I was ready for it to be over 11 months ago. I'm sorry you're still having pain too....have you had your gallbladder checked? Maybe you have non ulcer dyspepsia like my doctor thinks I have....who knows? I feel that I haven't had enough tests to settle on that though, so I'm going to have to be creative in how I approach all this...ask for more tests, not take no for an answer or let the doctor discourage me. It's not easy though. They think they know everything, those docs! But they're not the ones with problems, so I hate that they think they know what's wrong after one visit without giving any suggestions about how to actually HELP the problems.

My doc put me on a high protein, low carb diet for a few days. He didn't say to keep eating low fat, but I'm doing that anyway, 'cause I still think this could be my gallbladder. The high protein thing isn't really working; it's harder for my body to digest proteins, so I get more indigestion...uggh! At least I'm being seen again this Friday for a follow up! This doctor is more proactive, thank God!

Good luck in resolving your issues and keep me posted!

AJ

 
Old 01-06-2008, 03:11 PM   #11
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Re: Still No HIDA Test Ordered-- HELP!

Well I ended up in the ER because of pain last night (and I just happened to be close, I live an hour from the hospital). Mostly wanted to get checked out to be sure. I have a cyst on my right ovary and uterine fibroids. She said the cyst looked to be bleeding which was probably causing my acute pain. I have to follow up with my gyn and they still recommend the colonoscopy. I just found that fibroids can cause some to constipate/have bowel issues. Hoping it's that simple. Colonoscopy is Jan 14, gyn appt is Jan 21. Nothing like a good long waiting period while in pain. I'll keep you updated. Hope you feel better soon!

 
Old 01-07-2008, 01:46 AM   #12
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Re: Still No HIDA Test Ordered-- HELP!

Hi Mizz and Zoe x sorry you are in pain Zoe like you say nothing like a good wait when your in pain!! If it gets worse go back so they have to treat you there and then!!!! Im sure my cycle plays a big part in my problem lve woke up this morning with that sternum area pain again lve decided to go easy on what lm rating again didnt over indulge really at xmas till near new year had lots of sweet goodies in the house and pastries etc so l dont think thats helped at all! Time do without them again, I know if l go to doc she will put me on list to have the endoscopy l am so scared to make that step the thought of it makes me panic seriously. It dont help that ive thyroid issues going on and who knows all these weird symptoms could be due to that (am l kidding myself?) going to try a few days of healthy eating and see if it helps my period will be over then too ... theyve started coming every 7 weeks now doc says its due to the thyroid probs... l did see on another board that alot of women seem to have this sternum area pain? around cycle time and one of there docs said it has something to do with progesterone if l remember rightly but l cant find anything. I just want to get on with my life without having to worry lm going to get them bloody awful pains!! /sensations!.. you all know what l mean it stops you getting on right up until this started again l thought maybe now things have got back to normal TUT! will leave it here or l will moan alday lol. You2 take care l will be back! xxx

 
Old 01-07-2008, 05:08 AM   #13
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Re: Still No HIDA Test Ordered-- HELP!

Hello Zoe,

Sorry to hear about your having to go to the ER. If you have a cyst that bled into itself and then ruptured, it would have released blood into your abdomen and this would definitely have caused you to be in pain. Did they tell you what kind of cyst it was ? simple or complex ? and what size ? The size may help to explain any bowel and digestive problems that you are having. Ovarian cysts can sometimes press against other organs like the colon and cause diarrhea and constipation. They can also sometimes mimic ovarian cancer with symptoms like nausea, feeling full after eating only a small amount, bloating etc.. That CA-125 test that you had can also be elevated from having cysts (even if they are benign). Keep in mind that ovarian cancer, especially at your age, is extremely rare. However, just because it is rare, it would not hurt to see the gyne and to bring up these issues. That way you can put them to rest once and for all. Keep in mind that depending upon the type of cyst that they found, you may have to have it biopsied in order to be 100% sure. The thickened uterus should also be of concern and your gyne will probably take an endometrial biopsy (a small amount of tissue from your endometrial lining) just to bury any concerns there as well. The fibroids are completely harmless although sometimes they cause pain during menstruation (a HUGE percentage of women have these by age 40 .. something like 75% .. the fibroids will shrink when you reach menopause). If you do go for the endo biopsy, take a couple of Advil or Motrin one hour before the test .. it will keep you from cramping up during and after the test.

As for the colonoscopy, it certainly wouldn't hurt to be sure that all is right in there. They will give you a sedative and you will sleep through the procedure so you will not feel anything at all. The prep the night before is rather uncomfortable though as you will have to drink something that will clear out your entire colon. You may wish to stick to lighter foods as you approach the date (more liquids than solids) so that the prepping will not be too difficult. After the procedure, you may want to consider taking probiotics, which you can find in yoghurts or in pill form (if milk ingredients don't agree with you). These are naturally occurring "good bacteria" that exist in your colon in certain quantities. If the balance between good and bad bacteria in your colon is not properly maintained (especially if you have taken antibiotics which unfortunately may also harm the good bacteria in your body), you can start to experience bowel and digestive problems. Probiotics help to maintain the balance of your intestinal flora and in addition they also boost up your immune system since your digestive organs make up a huge percentage of your immune system. In other words, not only do probiotics help your digestion but they also help your body to fight off harmful contaminants in your food etc..

Good luck on your tests and hang in there.

 
Old 01-08-2008, 07:59 AM   #14
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Re: Still No HIDA Test Ordered-- HELP!

Hi Zoe and Niecsey,

I can't write much 'cause I'm at work, but I wanted to say hello and I hope that you are both doing okay and hanging in there. I'm thinking about you guys!

-AJ

 
Old 01-08-2008, 08:49 AM   #15
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Re: Still No HIDA Test Ordered-- HELP!

Hi Mizzaj x hope your ok

 
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