I had a colonoscopy and an endoscope in March with some biopsies being taken during the endoscope. I was admitted for the prep because I knew how hard it was when I was a healthy person.
Since I was inpatient my procedure time kept getting put off, so I was NPO a lot longer than necessary, plus I didn't have enough mestinon on board for a lengthy procedure like I had. I spoke to the anesthesiologist beforehand and he assured me that he had the IV form of mestinon if I needed it. By the time I got back to my room at 7:30 pm, I was no longer able to swallow, had impaired speech, unable to pee, and no control over my bowels at all. Had to have plasmapheresis before I was allowed to go home.
So my suggestion to you is to prepare more thoroughly than I did.
I don't think this would have happened had I known that I would not have the procedure until five pm and had medicated accordingly. I had taken a timespan mestinon at noon, but it was worn off by the time I went into the surgery area. And I probably should have taken more mestinon during the prep time, too.
Best wishes in whatever you decide.

I am way overdue for a follow up. Good thread.

Hi Ange, I have had both Crohns and Colits for the last 4 years and I have to get a colonoscopy each year due to the increased risk of cancer.

I was just diagnosed with MG this past April and had to have my yearly colonoscopy in May, but due to the new diagnosis of MG we delayed the procedure until June to let the Mestinon and my first treatment with IVIG.

I did have my colonoscopy and did ok. For the anesthesia they used a lite dosage of propofol and I seemed to tolerate the procedure ok. Per my neurologist instructions I took and extra Mestinon 1 hour before and I was given an additional 60 MG of Mestinon IV during the procedure. I'm happy to say all went well.

I was weak and it did take a few days to gain my strength back, but to watch for cancer it was worth the procedure. Certainly with MG we have enough challenges, I don't want to add cancer to the list.

I am very thankful I have such a wonderful team of doctors a in New Hampshire.

Thanks for bringing this topic up, it's important to discuss these screening procedures as they are often lifesavers

Joe

I have to have one soon too. The gastro said it would be done in the hospital. I'm waiting it out for awhile until i really understand the risks-thoroughly.
Be well,

I have had a colonoscopy and two endoscopies in the past sevearl months. I too was given propofol and the procedure was short and I took my mestinon before and did very well.

I have gotten into problems during surgery when delays were not matched with extra mestinon. My last surgery went well as the anesthesiologist was also a neurologist and he made sure despite delays I was loaded up both before and after.

Hope your procedures go well. Marie

I had a colonoscopy and I had no problems with it. I made sure the doc and anaesthetist were well aware of my MG. They are about the only docs that I have ever seen that deal with a lot of people with MG so they were full aware of all the beauty of MG. At that stage I wasn't on any medication for MG as I had just been taken off Mestinon.

There are many clinics and hospitals that do not regularly use anesthesia services for endoscopy/colonoscopy. Please make sure to request anesthesia to deliver your sedation. Anesthesia providers can give propofol, which is the safest medication to use. If anesthesia services aren't arranged, the nurses assisting the gastroenterologist will give you sedation instead. They can't give propofol and usually will use Demerol or fentanyl and midazolam. Because there are periods of very intense stimulation intermixed with long periods of very low stimulation, these medications can oversedate very easily. Also, they have a much longer half-life, metabolized and excreted much more slowly. They can accumulate, potentiate each others' effects, and can be dangerous in myasthenia patients or anyone with potential airway compromise. When I sedate for the GI docs, I give only propofol. One in awhile I give ketamine as well in small amounts. Ketamine can increase secretions, though, which can be a problem for us. Straight propofol is safest, so request anesthesia to do your sedation.

Jules, the bear with the bum-wagging is perfect for this thread! So cute! :)

Good info, thanks, Erica :)

Hi Ange,
whew - am I nervous for you.
You remember well. I had a colonoscopy and an upper GI endoscopy, all on the same afternoon, all done on an outpatient basis.
36-hours after the double-procedure, bulbar symptoms began to show up, and slowly but steadily got worse.
Even repeated trips to my Neuro, and repeated increases in my Prednisone - only slowed the growth of symptoms, and then only a little.
But the real kicker? After 8-weeks of slowly spiraling symptoms?
The symptoms went over the tipping-point, the last 48-hours before intubation. Immense distress.

So: there was this slow increase in symptoms, followed at the end - by a rapidly developing deluge.
I ended up in myasthenic crisis, flat on my back, unconscious in an ER - and intubated.
Almost 1 year later? I am still not recovered from this fiasco, and am still beset with numerous complications.

Reading the postings, from other Friends here?
I notice some immediate differences, that belong to the ''If I Could Do This All Over Again'' department.

(1) My Neuro did not supervise these procedures.
Although I had never had a problem with these procedures before? Not involving my Neuro - was a major faux pas. Both the scope-doctor and myself - goofed up, big time.
Meet with your Neuro, tell your Neuro what happened to me.
What happened to limpnoodle.
Ask for the full cooperation of your Neuro, supervising the preparations and readiness for:
all procedures; all anesthetics; all antibiotics; all therapeutic meds or infusions - that might be required to assist you, if needed.

(2) My procedures were outpatient, not inpatient. Neither the scope-doctor or myself knew any better.
Settle only - for inpatient status.

(3) Mestinon. In some of our Friends postings here, we see Mestinon used to good effect. We also see the want of Mestinon - having a bad effect.
I cannot take Mestinon at all.
It strongly flares the symptoms of my other autoimmune problems.
Had I been able to take Mestinon?
Might that have made a difference?

(4) Have the 2 procedures scheduled - at least a week apart.
That would hopefully be enough time, to gauge any adverse reaction.
It's your life, your chronic MG, your insides, your schedule. Not - the scope-doctor's.

(5) Whatever procedure is deemed more important? Have that procedure done first. In case - there is an adverse reaction. That way, the more important procedure - will have been done.

Ange, maybe I was a tea kettle - just waiting to be knocked over.
But before my ''double-procedure''?
I was experiencing only mild-to-moderate, generalized MG.
I had no significant bulbar symptoms, with:
breathing, or shortness of breath; with chewing or eating or swallowing; with drinking liquids; with nasal regurgitation; or with talking (often slurring words).
But as I said earlier? Less than 48-hours after this ''double-procedure''?
All these bulbar symptoms - started to kick in.

Ange, I can't caution you enough.
However?
With the proper preparation?
You may come through the whole experience - just fine.

Talk to your Neuro.
(... talk to you Neuro ...)
- Ross
(... talk to your Neuro ...)

My new rule of thumb? No anesthesia unless you do PLEX first. Neuro is in agreement. Plex helped quickly in my crisis and I think would give me a leg up. I'm 51 and still have not had a colonoscopy. Only because we are all too scared... If I had GI problems, I would do it.

Ross, that sounds so awful each time I read about it! You are such a strong man to go through that horrendous experience, and share this info with all of us. You are my hero! But you already knew that!

Why no upper and lower GI study at the same time? Usually it only takes another 10 minutes to do both instead if one. Again, I have NO experience as a known myasthenic undergoing surgery or invasive procedure. I'm just wondering if it could possibly be harder on our bodies to go through two separate anesthetics, with all the risks involved. Is it the stress of two areas of our bodies being invaded at once? Heck, I'm nervous for everything right now! All the knowledge u pick up here really helps a lot.

Thanks for starting this tread I have been putting off having one for several years. I have started to request advice several times, putting it off hoping to feel better if I wait a little longer. Good luck, I'll talk to my neuro first. Great advice.

I forgot to add that the day before I went to the hospital to have my colonoscopy and endoscope, I called my neuro's office to let him know I was going as he insisted I always do. His receptionist assured me that she would give him the message. He showed up in my hospital room two days later scolding me for not informing him. Needless to say, his receptionist no longer works there. Sometimes things can slip through the cracks, so don't be afraid to be overly obsessive about getting all your ducks in a row, as mine were definitely not. :)

Ross certainly having the upper GI EGD exam is a minor addition to the colonoscopy procedure and it only takes an additional few minutes.

One thought that may be a problem with the EGD procedure is that I believe they spray your throat with a numbing agent with the intent of making the procedure more comfortable, I believe a common choice for this is a spray called azactocaine. Given that the spray used is a strong local anesthetic I could see how this would affect the bulbar muscles.

I'm sorry to hear that you had a bad experience, but you do bring up some great points, thanks for sharing those.

Joe