I'm nervous, and it's making me cry

[MooseMom]

Five years ago, I had a colonoscopy and had a polyp removed.  No big deal.  But now my tx center wants me to have it repeated, so tomorrow I have an appt with the GI guy to discuss it.

I am extremely nervous, not because of the procedure but, rather, because of the anesthetic.

The last time I had this done, when I was in day surgery recovery, my bp plummeted to something over 30, and I ended up spending hours there.  I was the last day surgery patient to leave the hospital for the day.

Three years ago, I had a hysterectomy and ended up spending 2 nights/3 days in ICU because I couldn't wake up.  My brain finally kicked in, but I was so sleepy that I could barely move.  After the surgery itself, apparently the anesthesiologist got really frightened because I wasn't waking up, telling my husband that in her 30 years of practice, she'd never seen anything like this.

Since then, I've had my fistula created and my gall bladder removed, both day surgeries that went just fine except for the anesthesia part.  Again, I was HOURS in recovery, and there had been some talk about admitting me.  And SICK!!!  OMG, I was puking all the way to the car.

I tell everyone I come into contact with at the hospital about all of this, and I am sure they do their best to address my concerns, but nothing they do seems to protect me from really having a very hard time with anesthesia. 

I have worked so hard for so long to try to stay as healthy as possible in spite of CKD, and I have these awful images of me being harmed by something as mundane as a colonoscopy.

If anyone has an encouraging word or two, I'd appreciate it.  I haven't scheduled it yet, but I know I will be a mess until it is done and I know I have survived yet again.  And if anyone can think of any thing else that I can tell my GI doc at my appt, I'd appreciate that, too.

I can't find the words to explain how truly frightened I am about this.  If it was a procedure that I knew would correct a problem or make me feel better in some way, I'd be coping better, but I can't help but feel coerced.  I don't know if this is even clinically necessary.  What with the bowel prep, the procedure and then the recovery, you're looking at a three day ordeal for me.

I have a very bad feeling about this.

[gothiclovemonkey]

 

I have some issues with being put under as well, it makes me very unwell for weeks after. Last two surgeries I ended up employing a walker!
I always feel a little better when they give me ice chips after, and ass soon as they allow me to eat something, it seems to calm the nausea a bit!
It is very scary. i really hope everything goes well for you!
maybe they could try doing it under just twilight?

[MooseMom]

I'll talk to the GI guy about my options, but I don't know how much he knows about anesthesia.  But yes, I have every intention of talking to him about my concerns.

[MaryD]

Colonoscopies can be done using a very light anesthetic.  I will keep my fingers crossed for you.

 

[okarol]

I am lucky to not have had much need for anesthesia because the 3 times I did I was soooo sick! One was a minor surgery and the other 2 were wisdom teeth extractions - and I did not do well, nauseous, totally knocked out, with wild scary dreams. I have heard that I should request Versed next time, as it is much easier to recover from. http://sleep.emedtv.com/versed/versed.html
I hope you do well and it's over before you know it! 

[Chris]

They also use sedatives where you are awake, but just really relaxed. I never went for this one when I am offered because I do not want to know what is going on. I have also heard people getting epidurals (sp?), but that seems extreme to me because the needle goes nto the back I am told and I am queezy about that.
 
I hope that doctors figure something out for you, but in one sense, isn't t better than waking up during surgery/ I had two bad experiences with that, so all doctors and anesthesiologist are made aware of that.

[cassandra]

maybe what Chris suggests is a good idea. Just ask specifically for it. I've refused with quite a few ops to be put under, cos I refuse to stay a second longer in the hosp as humanly possible, so I go in 'cold turkey' i.e. with as much Diazepam as I personally consider safe. I wasn't fantastic, but I could go home quickly, and felt OK
Good luck MM

[Traveller1947]

Hi, MooseMom!  Since 2000, I've had two colonoscopies and am scheduled for another at the end of February, each with a different gastroenterologist.  The first man was a minimalist, as far as drugs were concerned, but did give me Versed.  I was awake throughout the procedure, but had no distress whatsoever.  The second doctor was very concerned about the fact that I was a dialysis patient and only gave me a sedative.  Again, I was awake and perfectly comfortable.  My current gastroenterologistent  is also very conscious that I'm a kidney patient on dialysis, and although we haven't discussed it yet, I know he'll give the least amount of drugs necessary to keep me comfortable.  My point in telling you all this is that you don't have to have any deep anesthesia or even be asleep during a colonoscopy.  It doesn't hurt and if you don't want to see what's going on, you can always close your eyes.  You're right to be concerned about the dangers of anesthesia, but for this procedure, you don't really need much.  Talk to your gastroenterologist and be sure he knows your preferences.  All the best to you on this journey.

[monrein]

   Oh dear MM.  I wish I could go with you.  I'd do what some have suggested and see if I could just be sedated.  I'll be thinking of you and again wish I could go with you. 

[billybags]

MooseMom, I feel for you, I bloo*ey hate these things, I have had two, two years apart. The first one they took a few polyps away and said they would send for me in two years time, I was dreading it. I think the taking of the sachets the day before,  to make you  GO was the worse. I hated it, sitting on the loo all day, was not good. Any way I chose to be put under, but it was a twilight thing, I think I had to stay for about 30 min after. They found I had got, them things that finger out on your bowels I can not remember what they are called, I didn't  know I had them and they are not causing any problems. Look you are strong, you will over come this crap LOL Just explain your position and tell them to just give you a little  knock out dose, (I can not spell anasetic) The procedure only takes about 10 min.Good luck.

[big777bill]

 I had one done pre liver transplant. They used the twilight method and it wasn't too bad. Maybe this is a better option for you. Wishing you the best.

[Deanne]

 

I understand how scary this has to be for you! I hope the twilight option is do-able. I'm sorry we can't all be there in person watching over you and holding your hands, but I think we'll all be with you in spirit, urging your medical team to take extra care with you.

[rsudock]

Oh Moosey I am so sorry to hear this. Neil just got one today!! What a coincidence that you posted this today. They put him in a twilight state...they did not knock him out. They used Versed I think and he told me he was conscience the whole time. Wasn't in pain but felt pressure. The doc keep saying "Give him more meds." But Neil refused. He was also very very concerned about the whole thing too and I think that adrenaline helps keep him from fallling to deep into the twilight state.

I am so sorry that you are panicked. I wish I could be there for you holding your hand.    With the prep, procedure, and anesthetic I can understand why you feel so distressed.....

Love,
Rachel

[gothiclovemonkey]

I cant imagine doing an epidural for ANYTHING! I had to have one when i had my emergency c section.... If i could have a child again I seriously think id tell them to just cut me open without anything if that was my only choice! those things SUCK. Not only do they completely paralyze you for however long(and thats just too scary) but getting stabbed in the spine seriously not cool!
Twilight isnt too bad, its like taking a really good happy pill and a pain pill lol ive never done a colonoscopy, but when i was 8 i had an upperr, and lower GI done at the same time under twilight. i remember seeing everything but i didnt feel it. I vaguely remember them "hitting" something inside me and i did feel that, but not pain, more like pressure.
Good luck!!!

[Rerun]

I'm wishing the best for  you.  The whole transplant thing must scare you too.  I mean, they have to put you under for that.  I hope you get someone who can help you.... who knows what they are doing. 

       

[SooMK]

I can so identify with you MooseMom. I am always interested in your postings since I am also Stage 4 CKD, pre-dialysis. I had a colonoscopy 5 years ago. My husband had to wait for me two hours longer than expected because "they had trouble waking me up!" What!! So I thought I'd just go over it with my PCP. Sorry, the report was lost and then I never pursued it. Now the GI guy says it's time to have another one (I hate when the PCP sends you to a specialist and then the specialist starts bugging you directly--go talk to my PCP, the specialist has no idea what else has been going on with my health). I've started over by asking the specialist to send the report again to my PCP and hopefully I'll get some answers. I really would just prefer not to have another one ever. The prep is a nightmare, I was never told why I had to have one in 5 years instead of 10 and I can't help but think that the Fleet prep stuff (that they no longer use because of damaging people's kidneys) didn't do me any good (CKD diagnosed a year and a half later). Doctors were so much smarter before I had something wrong with me. Sorry, I'm no help whatsoever but I will be thinking of you and wishing you the best.

[KarenInWA]

MooseMom, I'm with all the others who suggest using Versed. I used to work in a hospital pharmacy years ago, and Versed was standard for both upper and lower endoscopies. I myself have used it for a heart procedure where they went through the groin, and also for my fistula surgery (my surgeon let me pick how I wanted to go under. I told the anasthesiologist if she could use Versed and I wouldn't know what was going on *and* have no memory of it, I'd prefer that. Worked like a charm, for me, at least!). One of Versed's main side effects is amnesia. Too bad you can't use it for the prep the day before!

KarenInWA

[AguynamedKim]

MooseMom, I'm so sorry you have to go through this test.  You have every right to be concerned.  It's clear that you process anesthesia slower than normal and it seems there are a lot of great suggestions here.  Not that I have to tell you this but make sure you let them know every bit of your history and every bit of your concern.  Tell them to look you in the eye when they tell you they are going to take care of you the right way for the anesthesia.

So is today (1/23/12) your prep day with tomorrow (1/24/12) being your scope day?  I'm thinking about you and willing that everything will go well.  You let them know some crazy idiot from Texas will come and harm them should anything not go optimally.

I'll be checking this thread feverishly until I know you're doing well.

[boswife]

im so sorry i have not been here for you MM...  Im now worrysome of how your day is going and hoping all went well and you didnt have a miserable night worrying about it.  Bo (hubby) just had one and i felt so odd that i actually didnt even know they were going to put him under or i would have had some say in it as well.  I ran to the restroom upon arriving at office, and they snagged him and next i saw him he was sleeping.  He does do really well with all that stuff (he was an 'abbuser of sorts) in his youth and i think his body learned to rid itself well of toxins..  If it had been me, it would be a completly different sanerio..  I am drug intolerant as you are and so I now worry of how your doing.  You are so good about making your wishes known,  i hope they have listned.  Anxiously waiting to hear from you dear lady..

[MooseMom]

You are all so, so kind, and I am extremely lucky to have y'all give me such wonderful support.

You're not going to believe this, but I don't have to have a colonoscopy after all.

I'd leave it at that, but there is an important lesson I learned from all of this...

It was my tx center who first raised the issue of needing a repeat colonscopy.  They instructed me to find out if I needed one.  I contacted my GP's office and was told that I'd have to ask the GI guy.  So, I phoned HIS office and was told that the decision was up to the tx center.  The tx center didn't want to make a decision (quite rightly), so someone there spoke to someone in the GI office who said they recommended it.

Now, I don't know who talked to whom, but I was annoyed that I wasn't in on this decision-making process, so I decided that I'd make my own appointment with the GI guy and ask him directly.

That's what I did today.  He seemed surprised to see me.  He said that there was nothing unusual found five years ago, and since I have no family history of colon cancer, according to current guidelines, I don't need another procedure until 2016! 

He went to his office, handwrote a letter to my tx team and simply stated what I've just written above!  I'll fax it over to the coordinator tomorrow.

So, boys and girls, the lesson is to, whenever possible, avoid letting other people make decisions on your behalf without speaking to you and explaining to you why they are recommending said procedure/treatment/medication/whatever.

The personal lesson I take from this is that I really need to learn not to be so skeptical.  This guy could have made me do this if he was lacking a bit of money for his winter holiday to Bermuda, but he was kind and informative and was interested to know how the kidney transplant waiting list worked.  I got the opportunity to drag out my soap box and put it to good use!
 

BTW, he gave me all the reports from five years ago, and I discovered they used 100mg of fentanyl and 5 of Versed.

Anyway, thank you all again for letting me thrash about once again.

[willowtreewren]

Oh, MooseMom, I am SOOOOOOO glad you don't have to have the procedure!

I read your post this morning, but was at work and didn't have time to respond. Then when I was getting ready to later, an issue came up. so here I am this evening and it is all worked out.

Good for YOU! for speaking up and getting someone to listen. I hate the whole run-around thing. 

But at least you got that circle broken!

I had a colonoscopy in June and because they found 2 polyps, I have to go back in 2016. ARGH!

 

Aleta

[boswife]

whew!!  im sure glad about that and what a reliefe it must have given you!!   Glad your a thinker and solved it for yourself...   

[amanda100wilson]

It is not unusual for a transplant unit to require a colonoscopy as part of the pre- transplant assessment because of the icreased risk of cancer as a result of immunosupressant therapy.  If they still insist, despite what your GI doc. Says, I agree with other people that you should ask for twilight anaesthesia/conscious sedation.

Does your transplant doc. Know aboutyour past medical history with regard to anaesthetic because the duration/nature of the operation means that a deeper anaesthetic tends to be used.

[MooseMom]

It is not unusual for a transplant unit to require a colonoscopy as part of the pre- transplant assessment because of the icreased risk of cancer as a result of immunosupressant therapy.  If they still insist, despite what your GI doc. Says, I agree with other people that you should ask for twilight anaesthesia/conscious sedation.

Does your transplant doc. Know aboutyour past medical history with regard to anaesthetic because the duration/nature of the operation means that a deeper anaesthetic tends to be used.

You are right, of course.  And I certainly understand the reasoning behind all of the cancer screenings I have each year.  If the doc had found a cancerous polyp five years ago, then there would be no question about having the procedure repeated.  But I've been on the list for 18 months now, so I'm beyond the initial assessment period.  Furthermore, the tx center isn't insisting, rather, they are requesting verification from the GI guy of his clinical judgment, and in his clinical judgment based on my history and my previous results, I don't need to have the procedure repeated until 2016, all according to current guidelines.

You know, I don't know if the transplant doc knows about my past problems with anesthesia!  I'm not sure I told them.  Very good point!  I think that since the wait time is so long, I haven't really prepared myself for the actual operation.  When I had my hysterectomy, I got the anesthesiologist to write down a report outlining said difficulties and to make it part of my permanent record.  I have a copy of the report, and I will fax a copy to the tx team along with the GI's letter.  Thanks very much for calling that to my attention!

[amanda100wilson]

It'sdefinately something that they need to know in advance of you getting 'the call. '.  I'm glad that you don't need the colonoscopy.