Update On Gi Motility Etc... And Assorted Other Stuff

[MightyMouse]

I saw my longtime GI doc yesterday rather than the younger associate who did my past 2 appointments. Stomach emptying was at the upper limit of normal at 4 hours--a bit slow. He seemed very worried--didn't really talk, just had a very serious look on his face and lots of sighs--he took a long time going over all my recent records and then wrote me out scripts for THREE new gi studies. Oy vey. He said if they come back normal, then we'll probably do one additional test that is an endoscopic ultrasound of all the ducts... and if that comes back normal, then he's willing to call it collagen related/dysautonomia related. At this point, he said that since my dad has had bile duct cancer, and they don't really know risk with that for family, he didn't want to "miss anything". I totally get that, but I'm also getting really tired of tests right now.

I had 2 cervical biopsies this morning and am still feeling pretty awful. The procedure was really painful and I was a dizzy, nauseated mess afterward. I slept from about 10am to 1pm but still can't stand up straight without some pain. I'm hoping a good night of sleep will help, but if not, I may miss work tomorrow.

I have to go back in 2 weeks to my OB/GYN for surgical consult--she wants to do a more invasive procedure in the next month which will take off quite a bit of tissue; the upside is that I'll be SLEEPING this time. I'm sick of doctors right now... but grateful that I have Teri here who's been my #1 handholder and personal nurse. Wilbur (my cat) has slept next to me nearly all day too--he's snoozing by my side as I type.

[juliegee]

Hey Nina-

Oh I feel for you. I've had some female-type biopsies taken several times (endometrial maybe?) OMG, the pain. I have a tilted uterus, so my poor gyn had an awful time just getting there. I shook like crazy for hours after one. In retrospect, it was probably my BP bottoming out. After the other one, I insisted on lying on the exam table until I felt I could stand up- she was very accomodating. I will insist on some sort of sedation if there is a next time & I'm sooooo glad you'll be asleep for your next one.

I know the GI tests are a drag, but your doc sounds good. AND, the history of bile duct cancer makes his thoroughness really important. Just being on the upper end of normal for emptying time, can cause your symptoms......BUT it's good to rule out anything worse.

Sending healing & happy thoughts your way-

Julie

[potsgirl]

I'm sorry you're having to endure so many tests right now. Oh, wouldn't it be great to never have to see another doctor? No more prodding, blood-letting, peeing, etc, etc! Hang in there, it sounds like you've got a good doctor.

My best,

Jana

[MightyMouse]

Thanks ladies... I've had bad paps so many times and so many other biopsies before that my OB/GYN thinks we need to get more aggressive now to try to see if I've got cervical cancer brewing some place difficult to get to. My uterus is also tilted, which made today's adventure take a lot longer than usual. She's concerned that in inner part of the cervix is inaccessible to her and that there could be bad cells hanging out there.

Yeah, my GI doc is really good. He's a VERY odd man, but I know he's always had my best interests at heart, even if I can't read him. I'd swear he's one of my students with autism with is lack of social skill and lack of emotional response... but I'll GLADLY take that for the care I've gotten. He said my blood work was "pristine" but that he really wanted to err on the side of caution with me.

Personally, I think it's a spasm issue related to my autonomic stuff, but I will do the tests just to be careful. Watching what my dad has gone through is enough motivation to do the testing.

Nina

[MightyMouse]

Okay, so my GI doc wants me to get those 3 studies, and I've not scheduled them yet b/c I feel like we're chasing the wrong end of things for my symptoms--today was worst I can recall in a very long time. I'm considering ER, but oy, I don't think I can do it without Teri home to advocate on my behalf. This feels like a gall bladder attack, with pain high up in my chest, slightly toward my right from midline--pain from back to front, and shoulder blade up to neck. I don't see where a small bowel exam will elaborate on this, nor a chest x-ray, or the ultrasound of my liver, pancreas etc, as those have always been negative in the past. Feel like it will be a waste of time and money--for what purpose??? I may call my doc and ask that straight out this time... especially since my blood work was all, in his words "pristine".

I don't want to be a noncompliant patient--I just want to be out of pain and don't feel as though we are heading in that direction at all. I'm feeling so frustrated. Sublingual Levsin isn't really helping. Eating makes things worse, and night time is brutal---again, to me, a non medical doctor, again seems biliary as opposed to the lower GI area. Also, having belching just like I used to when I had a gallbladder.

Just needed to vent--it's even earlier than when I went to bed last night, and will try, this time, to at least sleep.

[juliegee]

Oh Nina-

My heart breaks for you. I've been there & THAT pain is awful. I totally agree with you- sounds like your GI is barking up the wrong tree. How about an ERCP? It would check for Sphincter of Oddi Dysfunction, look at bile ducts, etc. It would also be a good idea to have blood tests NOW (when you are in pain) to check your liver function and amylase levels to see what your pancreas is doing.

The ER sounds like an appropriate place for you at this point. A little IV morphine wuldn't be a bad thing & it would hurry the tests along so you can get treatment sooner. I was hospitalized for a few weeks in my late 20's with the same sort of thing- O-U-C-H!!!

Try a heating pad & sleep in the meantime. I'm sending prayers. Let us mow what you find out.

Gentle Hugs-

Julie

[MightyMouse]

We talked about an ERCP, and also talked about MRCP--haven't ever had either. I'm very high risk for pancreatitis according to my 2nd GI doc (works with my primary GI doc) b/c of my history of biliary colic etc. so an ERCP might be only if the MRCP doesn't give enough info. And... my doc basically said he doubts my insurance will approve me for the MRCP b/c I'm not vommitting and haven't had any loss of weight. Part of me thinks maybe I should go back to the 2nd doctor, who is younger and maybe a bit more willing to do the phone calls and paperwork to get me answers and help.

I kind of want to go to the ER, but am too freaked out to go by myself. Teri comes home for tomorrow night, so hopefully I can hold on until then--heck, I'll do wishful thinking and hope that this will all settle down. I was in pain when I got the blood work done last time, including the amylase, liver enzymes, etc.

nina

[juliegee]

We talked about an ERCP, and also talked about MRCP--haven't ever had either. I'm very high risk for pancreatitis according to my 2nd GI doc (works with my primary GI doc) b/c of my history of biliary colic etc. so an ERCP might be only if the MRCP doesn't give enough info. And... my doc basically said he doubts my insurance will approve me for the MRCP b/c I'm not vommitting and haven't had any loss of weight. Part of me thinks maybe I should go back to the 2nd doctor, who is younger and maybe a bit more willing to do the phone calls and paperwork to get me answers and help.

I kind of want to go to the ER, but am too freaked out to go by myself. Teri comes home for tomorrow night, so hopefully I can hold on until then--heck, I'll do wishful thinking and hope that this will all settle down. I was in pain when I got the blood work done last time, including the amylase, liver enzymes, etc.

nina

You are well aware of the risks involved and smart to be cautious. I did get very severe pancreatitis & was hospitalized for another few weeks. It was very painful and I have few memories of that hospital stay. I lived to push the button (for pain meds), but was often too sick to do it. I don't know what an MRCP is- but will research it. If it's less risky and yields similar info- I'd ask my GI to really push the insurance co to approve it on the grounds that it's SAFER for you. That should count for more than meeting arbitrary criteria, esp. with your family history.

Keep the ER in mind. It's great to wait if you can, but no harm in giving in if the pain gets too severe. So sorry you are going through this & pray you get to the bottom of things pronto.

Julie

[MightyMouse]

MRCP=magnetic resonance (MR) cholangiopancreatography

it's an MRI version of ERCP and according to most of the literature is as good as ERCP for diagnostic purposes... for many years they've suspected my S. of Odi has periods of spasming, and that perhaps there is stenosis/scarring. When they took out my gallbladder, there was indication of multiple infections--the thing was completely adheded to liver bed. I've never had stones, so I doubt that is what's going on now--most likely culprits are those ducts that remain.

I also think it's way more than just chance that so many of us here have gallbladder dysfunction, not the typical type with stones--but more the dyskenesia (motility) and lost motility. Just another not-so-lovely associated issue with dysautonomia. On a good note, I'm weeks away from my 45th birthday and have the nicest complexion in town w/o having plastic surgery. Okay, I must not be totally ready for the ER...still can crack a bad joke.

Teri's feeling terribly guilty about not being home. I just promised, over the phone, that I'd go to the ER if it gets any worse than I feel right now. Meanwhile, I intended to go to bed hours and hours ago... mean old pain wont allow for that at the moment.

Thanks so much for rallying your support on my behalf--I'm terrible at asking for help or support unless I'm at my absolute limit--and apparently I'm there (here? where the heck is here???) right now.

'nuf of my rambling and ranting... off to try to snuggle with my cat Wilbur--Moja, however, has other plans and is running all around the bedroom like a wild horse...here's hoping she gets tired soon and joins us for a nice long nap. Hugs to all and Wilbur just gave me a kiss which I share with ya.

Edited October 21, 2009 by MightyMouse
fixed spelling errors

[juliegee]

How are you today, Nina? Any better? Is it worse when you eat or drink?

Even drinking water was impossible for me when I was going through all of that. They NEVER quite figured me out, but I literally spent weeks and weeks in the hospital while they tried. They had me on IV fluids only and I was sooooo thin, around 110 @ 5' 9". My sphincter of Oddi was found to be OK, not the culprit after all. But the test (ERCP), gave me an very, very severe case of pancreatitis (amalase 1,500!) when I was already deathly ill. I was transferred from hospital to hospital in different states trying to get better. In retrospect (this was all 20 years ago), it was probably my gallbladder all along & the more sophisticated testing, like the HIDA scan, wasn't available to confirm back then. Luckily, I recovered enough to be able to eat & didn't have the darn thing yanked till recently. And, like you it was in awful shape, covered by layers and layers of adhesions and attached to my liver, etc. One of my more annoying memories of that period was when they had a psychiatrist visit me to speak to me about WHY I wouldn't eat? Are you kidding me? I was starved! I told him that was WHY I was there- trying to figure out WHY I couldn't eat. Grrrrrrrrr. Helloooooo!!!!

"Cuse my ramblin's I just wanted to check on you. I agree it sounds like your bile ducts are involved & that MRCP sounds ideal for you. I pray your pain is lessened or you're hooked up to something good by now. Let us know (or have Terri tell us) how you are. Hugs to your kitties. My fat Eli sends a husky "Meow" their way

Feel better-

Julie

[Rene S.]

Hi Nina, I'm so sorry for what you're going through. Oy Vey is so right! Do you see Dr. Fisher at Temple? I never did do my appt there. I'm so bad. But I'm so tired of drs.

Please rest up and take care of yourself. Feel free to PM me and I'll give you my phone number if you want to talk

I hope Wilbur keeps you comfy and warm.

Hugs,

Rene

[MightyMouse]

Hi again. I'm about the same as yesterday--and no, not seeing Dr. Fisher--the consulting GI worked with him but is now affiliated with Fox-Chase cancer center, as well as my GI office (they are affiliated with St. Mary's).

Wilbur and Moja BOTH kept me close last night, and Moja decided I needed a bath at about 5am, cleaned my head, arms, hands... I feel asleep on and off and only woke up when she changed locations. 8:) On a good note, she's a more gentle cleaner than Wilbur. Wilbur is a better snuggler though.

I haven't decided really what to do next. Just at a point of frustration/exasperation and pretty much wonder if they'll "see" what it really is on any test. That sounds kind of a downer, i know, but that's just how I feel at present. And yes, eating DOES make it worse, so does drinking. Takes about 1/2 hour to an hour and then it really gets going... and the pain gets brutal.

Nina

[pat57]

firstly I did not read everything so I may be off point.

But if your suspecting pancreatitus, my experience with it is that you feel better standing with your back against the wall. I did also see that confirmed someplace.

Been many years since I had it, and brutal is right.

You know there is an enzyme blood test for Pancreatitus? Has to be during (and perhaps right after) an attack. You might look into that.

[MightyMouse]

Miserable night last night with GI pain. I give up--I'll get all the tests next week b/c I can't let this level of pain persist without doing something about it. I do better if I don't eat or drink, but as we all know, that's not an option.

Thanks for all the good ideas.

[janiedelite]

Oh, so sorry about your painful abdominal issues!!! I hope the tests show something soon, and that treatment helps. I'm glad your kitties are able to help you through.

[juliegee]

Nina-

If I didn't know better, I'd say that you've grown a new gallbladder and it's gone bad, like it's predecessor The MRCP seems to be in your near future- definitely push for that one- with your family history and greater likelihood for pancreatitis. I'm sending prayers your way. Let us know how you're doing as you're able.

Gentle Hugs-

Julie

[HopeSprings]

I asked my Doctor for this test and he agreed. I have had the prescription for like 6 months and haven't had it done yet. I read somewhere that the results of this test can indicate whether or not you have Vagus Nerve damage. Is that true? I don't know if I should get it done because I don't think I have symptoms of gastroparesis. My GI symptoms are extreme pressure in the sternum area especially after eating or drinking and dizziness after eating. I don't have the nausea or anything like that. It's hard for me to go get medical tests because I have two small children and getting a babysitter is difficult, so it has to be really worth it. Thoughts?

Naomi