Visit today with GI doctor

[geneva]

I had my first visit with a GI dr. today. I was impressed by his PA because she not only knew what dysautonomia was but at a previous job had worked with a patient with dysautonomia. I thought that was a good omen!

The doctor thinks I should an abdominal ultrasound which I have scheduled for Monday. He also thinks I should have an endoscopy and colonoscopy to rule out other stuff, especially since I was not tested before being told I had IBS. It was "assumed".

He seemed to get that there would need to be additional precautions for me and suggested that they could use an anesthia that leaves the body in a matter of minutes....I am trying hard to remember the name because I wanted to know if any of you have had experience with this one. He did say it is the same drug they gave the Pres. when he had his done!! Does anyone know what this is?

For the prep he ordered NUlytely (not GOlytely) and told me that I could drink a clear drink called Enlive by Ensure which is high in protein that should help by not depleting necessary electrolytes. It was hard to find but we got some.

He also told me he wanted me to schedule a consultation with the anesthesia group to address my concerns and educate (my word!) them. He is planning to do the endo. first and I told him just getting to the hospital, the travel, noise, lighting etc will have my sympathetic system in HIGH mode and he should knock me out quick. He said they could use Verced but I told him I remember some of you having big problems. He said he would be surprised since I take Ativan and it is also a benzo. any comments from those who have had VErsed?

Now, the big question is WHEN. He said if I want to do it now, fine but if I want to wait until after the holidays there is no immediate rush. Today I feel like just getting it DONE in the next few weeks but if it were to set me back, I would not want to ruin the holidays next month for my family. If I wait, though, it will probably just stay in the back of my mind and drive me nuts!

Any thoughts most appreciated.

[Herdswoman]

Geneva......who is this guy and will you share him with all of us? Wow!

My last job in the hospital was in the endoscopy suite. Spent 4 years there. My advice is to go ahead and get it done in early or mid-November. That way it's over with and not hanging over you.

There's not much to it. I've had an upper endoscopy done with only relaxation techniques.....but remember, I knew the doc on the other end of the scope very, very well and trusted him implicity. It was not bad, I just made sure I gargled a lot of Lidocaine very slowly and numbed up the back of my throat first. Just a little burping, a numb throat for 30 minutes but no lasting after effects. (I'm stubborn. I just didn't want to burn 12 hours of sick time for a 3 minute exam. So I used my lunch hour. Went from admitting patients to hopping on a stretcher, took off my shoes and 15 minutes later we were done. Put my shoes on and went back to work.)

The colonoscopy was where I refuse to be brave or stubborn. DRUGS, GIVE ME DRUGS!!! Same doc as for my upper endo, bless him, his nickname is Snowman. :cool: Versed is widely tolerated by darn near everybody. Stuff flows like water in the endo suite. We give it to the oldest and the youngest and everyone in between. Very few true allergic reactions. Reverses easily if someone is oversensitive to it. Has a marvelous amnesia effect - most folks don't remember a thing. I don't know what the Pres. had, but it may have been one of the drugs that requires an anesthesiologist to administer (we used to do our own conscious sedation.) I gotta think that the POTUS had an anesthesiologist instead of just a GI guy with and RN.

Bottom line: The prep is awful, but the test is much easier than the prep. Just park yourself in the bathroom for the prep with a lot of water. If you can't, absolutely cannot get the prep down without vomiting it back up, call the doc and ask him what Plan B is. Remember that good patient prep is essential for a successful exam.

Oh, say thanks to your doc for the NuLytley. I wouldn't wish Golytely on my worst enemy. Hideous, awful stuff by the gallon and to this day I cannot stand packaged lemonade or salty drinks.

Are you having a general anesthetic or conscious sedation?

[geneva]

Herdswoman, thanks so much for you very helpful information. It is what I love about this site!! So many knowledgeable people to help. I really appreciate your sharing your experience, personally and as a nurse BUT I can't believe you just gargled with lydocaine!!!

Another question which I did not think to ask while I was there...does the neck get hyper-extended during endo? I have chronic neck pain and think that might be a concern.

I am not sure what anesthesia -- general or conscious sedation -- I guess the latter cuz isn't it better to respond to commands during colonoscopy? I was just so pleased to hear that they could choose anesthesia that could leave the system so quickly. He wants me to talk to the anesthesia group that will be in attendance. It will be done as an outpatient. I told him I didn't want to be kicked out of the hospital at the "normal" time until my orthostatic readings are normal as well as lying in bed and that could I please have a quiet corner room (he smiled at this but said yes!!!) So, I was pleased overall. Now, it comes done to meeting with the anesthesia group...we will see how receptive THEY are to patient input (LOL)

[DancingLight]

geneva!

i am so glad that you posted about your gi visit.

i would not be looking forward to all of those tests either....BUT, amazing attention to your dysautonomia by the doc. that is great. i hope the anestesia team is just as attentive.

i saw a gi guy who would not take me seriously at all and said he wasn't going to "lose sleep over the testing" on me and he hoped i "didn't either." well, i decided not to do that! the prep would have been enough to wipe me out.

so, that is the short of it. it is just so encouraging that he is watching you so closely (as he should) and validating you (again, as he should!).

i, like you, would probably just want to get the tests over with...but if there is no hurry...i guess it might be nice to wait until after the holidays...

depends if the results might be useful and bring some relief of symptoms or not..

well, i will probably try to post tomorrow on my gi stuff...boy, fun stuff to talk about huh? thank goodness we have each other here!

i don't really have any insight for you. just glad that he is doing the two things i would be most concerned about....a more conservative prep AND watching the anestesia stuff...

please keep us posted....

i just wanted to let you know i was thinking about you and sending hugs!

emily

[JR2000]

I hesitate to post my experiences with colonoscopy, but as I have met with and discussed my experience with others on GI message boards, I have found out there are many (including myself) who didn't tolerate the test so easily. The prep is unpleasant but not intolerable. I did have a lot of palpitations with it, but not that big of a deal. I didn't have a lot of problems with the drugs (Versed and Demerol), which was a surprise given that I usually can't take anything without having horrible side effects that are always considered rare. The problem was the colonoscopy itself. After very generous amounts of Versed and Demerol, I still can remember the pain of the test; it was excruciating for me. After it was over, I thought it was great that it was such a relief that it was over. Little did I know that my nightmare was just beginning. My intestine went into what was described as a chronic spasm or charley horse and stayed that way for six to eight months with no relief. I lived on Ensure because I couldn't eat solid food at all. The pain for those months was unbearable. My abdomen was hard as a rock as you could feel the spasm from the outside. I have come to find out from other boards on IBS and IBD that my experience isn't as uncommon as I initially believed it to be.

I share my story not because I think people should not have colonoscopies ( in fact it is the best test medicine has to diagnose colonic disease, and by far the majority of people do tolerate it fine), but rather only to present the information that not everyone tolerates the test so easily, and particularly those who have heightened visceral sensitivity to begin with (usually sufferers of IBS).

JR

[Herdswoman]

Herdswoman, thanks so much for you very helpful information. It is what I love about this site!! So many knowledgeable people to help. I really appreciate your sharing your experience, personally and as a nurse BUT I can't believe you just gargled with lydocaine!!!

Another question which I did not think to ask while I was there...does the neck get hyper-extended during endo? I have chronic neck pain and think that might be a concern.

I am not sure what anesthesia -- general or conscious sedation -- I guess the latter cuz isn't it better to respond to commands during colonoscopy?

Can't believe it? Pshaw. There are no nerve endings in the esophagus. Once you get the scope past the gag reflex in the back of the throat, it's a wide-open highway to the stomach. God put it there and it's perfect: no incisions, nothing at all in the way, zoom. The gag reflex is best numbed by topical anesthetics. The IV sedation is very helpful in relieving anxiety and the sensation of pressure in the back of the throat. Remember, I've only seen/assisted with this test done about a zillion times.....and I know my doc very, very well. He was actually more nervous than I. He came in the room and said "OK, Amy, we're going to practice before we do this." I said "Practice? *** is that? What do you think we've been doing together for the last four years!!!!" But he wanted to verbally walk through it with me on the table.....whatever. Seemed to make him calmer. It's nothing for a good doc to do the entire upper exam in 3 minutes, 5 minutes tops with a cooperative patient. (from the time the scope goes in to the time it comes out completely.) With meds, I would have to have an entire day off work, (no driving, no decision making) which would have meant 12 hours of vacation or sick time shot.

The upper endo will 99.9% of the time be an absolute breeze. You will be lying on your left side with your head on a soft pillow and tilted slightly downwards, as if you were nodding your head. The most frequent side effect afterwards is a slight sore throat that disappears within 24 hours.

As for colonoscopies: It can go easy, or it can go hard, most of it depends on the patient. Probably 80% of the people need sedation to help get them to that relaxed place and can't wait to go (as I used to explain to them, you're not completely in LaLaLand, but you are definitely riding the bus!) Then there are a very few others who can do relaxation well without drugs. Then there is the real minority who are a true PITA, who are so sure that they are more unique than anything else we've ever seen, who swear to G-d that they were promised general anesthesia, who won't go with the flow, hear but will not accept anything we say. They come in the door with their agenda and are a giant pain until they leave. Thankfully, they're very few people who are cannot, WILL NOT let go and let the drugs do their job. They've made up their minds that this will be a bad experience and so it is.

Dancing Light, I think the choice of words the doc used was unfortunate for you. He meant for it to be something that was a statement of confidence. I mean, I wouldn't WANT a doc who would lose sleep over doing my test! By the time a doc has five years in practice, he's seen stuff you wouldn't even dream of....multiply that a hundred times if he's practicing in an inner city teaching hospital, which is where I worked.

Gals and guys, I've worked with heart surgeons who describe what they do as "garden variety" stuff - but never in front of a patient. We're in the OR, swapping jokes and recipies. Believe me, it's not what you see on TV, with the nurse wiping the doctor's laboring brow and statements like "We're losing him!" Oh, was BS THAT is! We do our jobs like we do the dishes at home. It's no big deal.

***BUT*** a significant part of our job is to make the patient comfortable, ease anxiety because it IS a VERY BIG DEAL to the patient.

I'm so glad I dont' do it anymore!!!!!!!!!!!!!! 20 years was enough!!!!!!!!!!!!!!!

[MightyMouse]

I've had all of the tests you're up for, multiple times. For me, the preparation was always the hardest part because it threw my body out of whack for a few days. Sounds like your doc is trying to prepare for that with the supplement you've gotten.

NuLytely: well, you'll go heavily after drinking it, but that's the point. I've never been able to finish as much as was prescribed in the alloted time, but it still did the job.

Yes, the meds will make you groggy, but it's not general anesthetic as noted above. If you opt for the meds, it will help you be relaxed but able to follow the doctor's directions during the test. Despite having at least 7 upper endoscopies, I only recall ONE of those tests, where I remember the doc speaking calmly to me and telling me to swallow (the tube).

I think I've had 2 colonoscopies at this point, as well as a full GI series which is slightly different than you're suggested tests--but have the same preparation. Again, for me, that's the hardest part.

Nina

[JR2000]

Herdswoman:

Great information and account of your experiences. I would concur from what I've seen that patient anticipation is so key in getting through procedures well. That is what was so surprising for me. When I had my colonoscopy, I had heard from everyone what a totally easy test it was so I went into it with literally zero anxiety and thinking it was going to be nothing after getting over the prep. In fact, the sedation didn't sedate me, it knocked me out until the scope reached the transverse colon when the pain became unbearable. I think that doctors also need to recognize that not all patients react the same to procedures that are generally well tolerated. My current gastroenterologist (a gem) has had all sorts of patients come to him with similar histories with their colonoscopies, and he takes a much different approach from the physician who performed my colonoscopy. His attitude is all about making the patient comfortable and adjusting the type and amount of anesthesia that may be needed for an individual patient, especially one who has had problems with the procedure in the past, and particularly those individuals with severe IBS. Having been a former medical student myself (unable to finish due to my own health problems), I saw how future doctors are trained, and it is no wonder that it is difficult to find physicians who are willing to look outside the box of what is generally expected when a patient walks in the door.

JR

[Guest Julia59]

I know I need to have a colonoscopy, but I fear it more then a tornato blazing down my street. I had an endoscopy, and I had no problems other then I reacted to the drug they gave me later that night.

It's hard to tell if it was my POTS or the drug that led me to the ER. I was not yet diagnosed with the POTS and I thought me heart was affected from the drug. My heart started pounding and thumping. I had had this beofre , but this time it was really different-------full blown tripping, I was not myself. It must have been the drug. Then when I got to ER, they gave me something for nausia. I insisted they give me no drugs as I felt I was already having a reaction. They said don't worry, this will relax me. NOT------------! Then I was really trippin, I thought I was going to jump out of my skin.

During this time I was still in the fase of trying to find out what was wrong with me. It was truly a nightmare. After later being diagnosed with POTS, congenital cervical spinal stenosis, chiari, cervical/cranial instability, EDS,----and NOW this latest possible diagnosis---functional cranial settling (FCS)---no wonder I was so sensitive to the drugs. Then you add the chemical exposure from my past employer to the mix------and you have a person who is LIT--- .

I did not tolerate the anesthesia well at all when I had my cervical discectomy/fusion with plating. I came out of surgery with a HR of 85 and in recovery is went of to 130! I do not rememeber recovery. All I remember is being wheeled to ICU with tachycarida. They didn't seem concerned as long as my BP was stable.

My fear is not the prep----it's the drugs. And I have IBS for sure----i've had it as long as I can remember. My fathers bowel is torked and he can't have colonoscopies any more. I have a diverticuli in the small bowel just near the jejunem area---near ALL the bile ducts. At some time in my life this has to have a closer look. I can't remember if they could see it with the endoscopy---I thought I remember they said it was confirmed that I had it. It was first diagnosed with upper GI, and a CT scan. I have all kinds of trouble with my digestion in the mid section. Once it gets down to the colon I think nature takes it's course. It's just getting to that point-------------It's like the cartoon (Family Circle,) where Jeffy takes the long route home..................all these detours. Very slow motility through that area.

Ohhhhh----to not have bloat for one day would be sheer heaven. I just have to lose my fear of that test. It's only the drugs I fear really. After being exposed to the chemicals I was exposed to, and not knowing of all this other stuff which would have made me a lot more sensitive---it just simply made such a mess of me. I still can't believe I had lead levels of 30.6---when the reference was 8.0! I just recently picked up those results from pathology labs---as MCO--(Dr. Grubb's home) didn't keep it on file. I was angry that this was not persued further. A second test was ran, but they did not use the agent that would bring it out of the urine---so basically it was a useless test. A blood test showed normal levels, but the blood life is only about 35 days. If it showed in my urine as the first test showed almost 4 times the levels----it was well beyond the blood life----as the kidneys come after the blood life.

I think to this day this is what caused my dysautonomia to come into full swing.

At some point i'll have to get brave and do the test. I just have so much other other stuff going on with my upper spine and cranium right now, I don't no which to deal with first. Sorry---this turned out to be a vent---and ramble at the same time------but i'm sure you all understand how things can get.

Julie :0)

[morgan617]

i've had about 20 endoscopies and several dilatations and never had a problem either with the drug or the procedure. i've always had versed and fentenyl. all i do is have a nice long nap. if you ask them they will typically give you iv fluids so you don't get dry. they always give them to my son because he dehydrates so easily. i have had about 5 colonoscopies. i remember waking up once saying ouch, (and probably a few choice other words!) but have no memory of the pain i seemed to be having at the time. they are about the easiest tests i've had. as far as the prep, it is the worst part. but i go on a liquid diet for two days and then only have to drink about 1/3 of the nulytley to get cleaned out. also, it's the aftertaste that gets me, so i hold a lifesaver in one hand and guzzle and immediately put in a lifesaver to keep the aftertaste at bay. it works like a charm for me. good luck! morgan

[blackwolf]

I had everything done once. I hope not to repeat it to soon. I don't remember the procedure, but the prep was tough. About 3 days before I was put on a soft food diet and the day before they gave me a one time treatment (about 2 ozs. to drink) and I was "done" in about 2 hours. Just water till morning of the procedure. They gave me tons of IV fluids when I got there. They were great. About 2 days after the procedure, I was really sick for about 3 days, no idea why, I felt great the day of. Just one of those things I guess.

Good luck, it really isn't that bad.

Blackwolf

[geneva]

Thanks everyone for your input and your suggestions. Morgan, I like the life saver idea!! Herdswoman, thanks for detailing the endo procedure. I do much better when I know in advance exactly what is going to happen. Glad I don't need to worry about the neck.

I am going to talk to the scheduling office Monday and see when he is available and then schedule the anesthesia consult and see where I go from there.

[Guest Mary from OH]

Geneva-

I don't know if you had your procedures done yet or not, but like several have said, the prep is the worst part. The endo is cake. The colonoscopy is really nothing either, because you will remember nothing. However, as someone pointed out, I think because of POTS, you may have a little bit of problems. I had to be given HIGH amounts of demerol and versed (my dr said about 10x the normal amt) and I was still screaming bloody murder. (this is from a person who NEVER screams!!) It was incredibly painful for me. Fortunately, I did not have lasting pain from the procedure (other than the pain I already had). Just talk with them about your concerns ahead of time and I think you will be ok. Also, I kept stopping breathing during the test (I am a shallow breather) and my blood pressure was VERY low. It really freaked them out.

I think you will be fine. It really helped me to know that the meds they give you will give you amnesia of the procedure. I have bits and pieces recollections of the colonoscopy, but no memory of the pain or anything bad.

That really put my mind at ease... especially since I had to have more than one done!! LOL!! Half of the time, I think the fear of the unknown is the worst part!!

Hope this helps a little!! Good luck with your procedures and I hope they give you the answers that you are searching for for some relief!!

[goldicedance]

Here's another wrinkle to add to the POT (no pun intended). After being diagnosed with POTS and with continuing problems retaining fluids, my cardiologist had me admitted to the hospital the afternoon/night before the colonoscopy so that I could have loads of IV fluids during the prep so that I would be pretty much "tanked up." I did get a terrible migraine right before the procedure--probably triggered by the fluid inbalances.

I wouldn't be so uptight about the anesthesia that they use for the endoscopy and colonscopy.

General anethesia for surgery is a different issue. My internist works with the anesthesiologist to brief her/him about POTS. I had an arterial line put in so that my blood pressure could be measured most accurately. Also during the gall bladder removal surgery, there were precautions taken about fluid imbalances. I had 2 bags of fluid pumped into me during the surgery itself and more during the next few days. While a "normal" patient who has undergone gall bladder surgery can go home typically in less than 24 hours, I remained hospitalized for 3 extra days so that I could continue to get IV fluids.

Try to remain calm! Be brave! And, don't focus so much on possible problems. Be sure that you are comfortable with the doc and that the doc is competent!

[DancingLight]

geneva,

what did you decide to do??

are you also having your gallbladder checked out? since you said you have middle of the night pain too?

oh, man, we are a pair...the u/s completely wiped me out too with the no food, no water thing. i couldn't believe how much it took out of me!

emily

[geneva]

Hi Emily,

Thanks for asking but I haven't done anything about the 2 procedures yet. as I said in the other topic it was a very stressful weekend and I'm still trying to recover. You know how it is when you feel out of it and don't want to think of anything else...just yet.

my GI doc said he wasn't ordering the Hida at this time. I myself am torn between thinking it is a low functioning GB or just IBS. I have discussed both with my internist as he has seen me during several flare ups this year and on exam he doesn't think it is my GB. I haven't had the middle of the night pain in months since I figured out to stop eating after dinner. Why that is I don't know but I repeated a "test" several times and each time I ate at night the pain returned.

I think I am going to wait to get my ultrasound results to see if anything shows up there and then decide how to proceed.

rest well!

[DancingLight]

hey geneva!

i haven't found a "food" or "eating pattern" to go with my middle of the night attacks. honestly, i eat a bedtime snack almost every night! and that doesn't seem to be it. i do keep food logs though, so i may go bakc and look it over again and see if i pick up on something more.

i totally understand needing a little break from it all and not scheduling anything yet! it can get exhausting and sometimes we need to take a break. for me, honestly, being chronically ill is a full-time job...and sometimes, i don't think i don't take the time to let myself NOT be doing something related to that! ugh!

so, relax, recup from the weekend, hope your husband is feeling okay, and then update us when you know more!!! how does that sound???

emily

[JR2000]

I too have had the pain in the upper right quadrant. I had the HIDA which found my gallbladder doesn't contract very well. I decided not to have surgery because I have found I can mostly control the pain with diet. My doctor thinks it is all related to the IBS problems in that the whole GI neuromuscular system can be affected when IBS is present. It doesn't always just affect the colon. I also am coming to believe that the GI problems are also related to the cardiac symptoms and migraines.

JR

[geneva]

Thanks again for the posts.

Emily, you are so RIGHT..this chronic illness IS a full time job...don't you wish we could resign??(lol) Today I am doing better and my GI tract is even behaving which helps so it has been a much better day all around. Hope you are doing OK as you wait for your doctor appt. Do they have a list you can be on if they get a cancellation? I know some doctors' offices will do that.

My GI doctor's office called today and asked if I wanted to schedule my colonoscopy and endoscopy and I said "not really". The nurse laughed and said she gets that a lot!! Anyway, with the dr. schedule and my husband's (since he needs to take off work) the first time is the week after Thanksgiving which is only weeks before our kids arrive for the Christmas holidays. We discussed it and decided to wait til after the first of the year since the doctor said there isn't an immediate need.

Still waiting to hear on ultrasound results but expect they will be "normal" like the last ones...which is a good thing.