Hi Ange,

Sorry you are having abdomial problems that need to be addressed fairly quickly in some manner or the other.

Thus far, have had no problems with colonoscopy or endocopy with propofol. My last endoscope/arterial emolozation was one month after hospitalization for acute MG crisis. Your gastro needs to disuss your case with your neuro as you may need Plex/ IVIG pre and/or post scope. What does anesthesia say? I have had procedures both in- and out patient. (I receive maintenance plasmapheresis so pre and post plex was a given for me)

I did have to be put under with general anesthesia and intubated (2days) for an acute bleeding ulcer---ended up having a transcatheter arterial embolization after a failed endoscopic hemostasis.

I always have my mestinon with me. I have learned the hard way that it can sometimes take way too long to wait for hospital protocol:-)

Good luck and hope all turns out well. Keep us posted.
-sherry

I have had several colonoscopy as an outpatient and never had a problem. the nurse assistance gave me a sedative, another nurse monitor the equipment and my Gastroenterologist performed the procedure. I have always had polps which were benign. I guess it depends on the individual and how they are with their MG symptoms. you definetly want to give them a list of what drugs exacerbate your MG. God Bless. Cabbage7

I'm still in the diagnosis phase but had an upper endoscopy performed a few weeks ago. I seemed fine right after the procedure but 36-48 hrs later I had INTENSE muscle fatigue that lasted for about a week. I was given propofol. We were in the midst of a heat wave as well which slowed me down prior to the procedure, but after the endoscopy it completely put me out. I would walk my dog a few blocks and need to lie down after. Is it normal to feel the effects of the propofol only after 36 hrs-48 hrs?

Ross, did you feel fine right after too? I read your post and it seems like you had the same delayed reaction.

Thanks so much guys for all your advice and for sharing! I am poep scared! Now ain't that an appropriate expression. Lol! I had to chuckle at the little white bear remark!

I have had a gastroscope before which diagnosed an ulcer but I wasn't allowed any sedation. I managed although it was none too pleasant. The colonoscopy I won't manage without sedation though. Holy smoke Ross your experience was even nastier than I had remembered and I think a very good indication that I should be extremely cautious. I needed to hear that to put it into perspective. Thanks and really hope you starting to settle again. So good to have you active on the site once again!

The gastro doc I saw is very conservative and completely aware of the struggles I have with my MG. He works from the same hospital and has seen me in the wards on his rounds. He definitely won't do anything without first passing it with my neuro thankfully. My problem is I have really severe respiratory muscle weakness so that is there biggest concern. I am also on warfarin for repeated pulmonary emboli so stopping that for the biopsies is also risky. He has already said we need to think very carefully about this and if we do the procedure he absolutely wants an anaesthesiologist on board. He's cautious and I guess that is good. Like you said though Joe I have some alarming symptoms. I've experienced sudden weight loss despite the dreaded prednisone and my anaemia is requiring transfusions every 8 weeks. I am afraid there is definitely something cooking and am just scared we miss the boat because of fear about my MG. Sherry you obviously had some sort of bleed too? Sorry man it's not a pleasant thing to go through! Have they sorted you out?

Debbie I too have been sitting on this, and I don't mean my bottom, for fear of the effects it would have on my MG but the bleed I realise really shouldn't be ignored.

Shame on your neuros receptionist Limpnoodle and really sorry you ended up with drama despite trying to be responsible about it all! Erica you are a wealth of knowledge. Thanks for sharing. The doc mentioned usually using propofol and some dormicum. I have reacted terribly to ketamine so that would be a no no for me. I'm wondering if using my BIPAP during the procedure would help to ward off problems although of course considering the delayed response you had Ross it's obviously way more complicated than that.

The doc did mention that he was first going to explore a few less invasive investigations. He spoke of an MRE and something else that sounded damned unpleasant but wouldn't require sedation. Said he wanted to discuss with his colleagues first to see which would be best and would get back to me. He did make it clear that these wouldn't absolutely exclude lesions and wouldn't show up Crohn's which is obviously a possibility. I am on so much immune suppression though that he said it would be unlikely to be causing the bleeds.

Once again to all of you thanks so much! It is so good to have an MG family to turn to who know exactly what it feels like and are so willing to share and help. Your input has really been invaluable to me! It's a scary thing to face and honestly it just doesn't seem to end with this illness does it. We endure, we grow and we share.

Strength and warm South African hugs to you all!!!
Ange

NYC, the propofol in itself wouldn't have any effect on you days later. However, I can see how the stress of a major procedure would cause myasthenia symptoms to worsen! The delayed onset of severe weakness is concerning, though. I would have thought that by the next day our MG symptom flare-ups would have presented! I am so thankful every single day that I have met you all, and that I learn so much from each of you. Thank you!!!

Ange, that is an awesome idea about taking your BIPAP machine with you for every procedure! They could definitely employ the use of it during a colonoscopy! We usually assist the patient into a comfortable side lying position prior to giving any sedation. That way we ensure that we don't hurt the "down shoulder" or other parts and to also give the patient a feeling of control. We place an oxygen cannula at that time. For you, they could get you comfortably on your side with your machine already in place and functioning. You could talk to the people in the room beforehand to make sure they understand how to operate the machine. What a great idea! Also, any time any if us to in for a procedure or anything, if we have a CPAP or BIPAP machine that we use at home, we should take it with us. If you do that, the hospital will check it out and make sure it's functioning well and have it ready for you in PACU. This is how it works at my hospitals; just check to make sure yours is the same. I don't want someone to expect something that isn't in place. On the other hand, if the system isn't in place you could still inquire before you go in to make sure they can accommodate your needs.

I'm glad you're getting this looked at! I don't want you wasting away and bleeding slowly. :( the hospital where you are going may have a set protocol for what to do if a patient needs Coumadin. We have get strict guidelines regarding all the anticoagulants. The gastroenterologist may also plan on getting advice from your doctor that is in charge of that aspect of your health. I'm going to be praying for you! If I could give you blood, I would.

Bumping this Discussion from last year to the top.

I am looking at a double colonoscopy/endoscopy in the next month or so. It sounds like Propofal (Diprovan) is now the safe-standard, as I was told today that is what they will be using.

Any comments/pointers?

I will definitely be "talking to my Neuro" as well.

Thx. Chris.

Mayo Clinic is offering an at-home colon cancer screening test.

From their website:
The stool DNA test is a noninvasive laboratory test that identifies DNA changes in the cells of a stool sample. The stool DNA test specifically looks for DNA alterations associated with colon polyps and colon cancer.

The major goal of the stool DNA test is to detect whether DNA changes that indicate colon cancer or precancerous polyps are present in the colon.

One stool DNA test (Cologuard) is approved for use the United States.

You can read more at:
http://www.mayoclinic.org/tests-procedures/dna-stool-test/basics/why-its-done/prc-20019779

I spent many years working in GI research at Mayo. This test has been a long time in research and testing and is just recently released. My last colonoscopy was a few years ago--and they told me unless there are symptoms, 10 years was the time for me to come back (I was 65 then). I plan to do the DNA at home stool test next time around.

Good Luck

Hi Chris,
I hope this all goes well for you.
Yes - absolutely, positively have your Neuro fully involved (I didn't).

Looking back, the bigger problem for me - was the endoscopy.
To begin with, my MG was ramping up steadily, and I did not recognize this situation. I really was in no condition, to undergo any type of procedure.
Then, there was: the procedure itself; and also the general anesthesia - well it was all downhill from there.

It's probably not necessary, to have all this done inpatient.
Since Ange started this thread, last year - a fair number of people here, have reported having either 1 of these procedures, with pretty good results. I think the level of your MG symptoms - is a huge factor.

Wishing you the very best! - Ross
(sheese - don't let 'em use that numbing agent, on your throat, as Joe has mentioned.)

l have had both these procedures, but never at the same time.All involved knew of my MG status.(drug free remission here, but lets not take any chances ).
l believe l also have the lesser of the anesthesia ,l do take much longer to wake than what is considered normal ,which always causes a concern.But overall l do okay.l do feel like l am living in a room of jelly for a few days,everything feels slow and sluggish.So l watch my diet etc.
The Endoscopy took a few weeks til l felt my normal self, so if it was ever suggested to have another l would really have to look at better strategies.

When you turn 50 here in Australia you get you bowel cancer test kit as a present, how thoughtful...eek.

Always fighting the good fight.

I've had both done at the same time. As they all said let your neuro know, make sure gastro dr is aware . I did ok but everyone is different.

Good luck, let us know how you do.
Annette