I was surprised last week when I discussed scheduling for a routine follow up colonoscopy with my PCP and she asked if I had any problems with exacerbations or relapse after the last one.
Actually, I hadn't been dx with MS at that time...I think an exacerbation and diagnosis followed a few months later...coincidence?
I know any stress can cause an exacerbation and I'd be happy to have an excuse to skip this test but does anyone have any info on a problem with colonoscopy with MS?
erash Now that you mention it, right after my colonoscopy and one week later endoscopy, I had some major flare up and was out for a good week and still trying to bounce back somewhat. Kind of worries me about tomorrows spinal MRI and tap. So I'll definitely ask my doctor her opinion when I see her next week.
@erash , I had a partial hysterectomy in November 1987 and was DX with MS in May 1988. I always wondered if there was any correlation?
All I know is the thought of having 1put me under to much stress that l just cancelled it erash
J 🌠
Jesmcd2 it's just the clean yourself out prep that was NO FUN 
Exactly! That and they have to put me under, told me l can't be alone for 24 hrs.😑 Have to have someone pick me up. Nope to many variables to go wrong!😁 Not to mention that OMG that is like a gallon and a half of stuff to drink! Yuck!
J 🌠
I'm with you Jesmcd2 ! Too many variables so I've avoided it even though my PCP gets on my case about it. The last time I was put under for an outpatient procedure, I had a problem coming back out of the anesthesia. Fun times...NOT! And since I live solo, finding someone to drive me is not an easy task at times.
Raingrrl
They don't use general anesthesia for colonoscopies. Did u have problems with the propofol or versed? My only problem with that is I talk too much about God knows what 😜
Yeh, getting the ride and essentially being home bound for the prep can be issues.
For those not considering a colonoscopy, the FIT yearly (fecal immunochemical test) might be an option. Only requires a small sample 😊
TMI?
They told me right off the bat they had to knock me out erash I don't remember why now.😕
erash , the propofol puts me completely out each time I've had it. Versed too, actually, although that was long ago. I think this is typical with the doctors I've used. I wonder if yours uses a lower dose?
I hope you get an answer to this question! Many of us are in the "colonoscopy years" so we will be watching.
greaterexp
I had an appt with the gastroenterologist this afternoon (routine pre-procedure appt.).
He said he does many colonoscopies on people with MS or even myasthenia Travis (another neuro disease) and all do ok. "Just be sure not to get dehydrated"
Although I thought if someone had a relapse after the colonoscopy, they'd go to their neuro, not back to him. So he'd probably never know they relapsed...
P.s. If anyone's wondering, I discussed the stool DNA (cologuard) and was encouraged not to opt for that choice. It's a very sensitive test and is apt to find something abnormal that would then require a diagnostic rather than screening colonoscopy.
By the way the gastroenterologist mentioned that the AGA goal was to get 80% of eligible people screened with a colonoscopy by 2020.
I wondered if that's an economic or health goal 😉
erash I asked my PCP about the stool DNA test too and she pretty much discouraged me also. Its disappointing that they don't consider it a viable alternative.
@erash I just had one this past Jan the problem is you can't take your meds. The day of mine I was supposed (key word) to have it done at 8am but I didn't go in til 1pm which meant I missed two doses of my meds. As a result my body locked up and I could't bend my leg. The dr even tried to bend it but it wasn't going any where. As soon as I was able I took every dose I missed. I know they tell you if you miss a dose don't worry. Well I didn't care I took everything and a day later I was ok.
erash , this is interesting since I am officially PPMS (some off-the-record uncertainty remains) and therefore not really supposed to have relapses, but I had a really rough time after a combined colonoscopy and upper endoscopy in December. I reported it to my neurologist at the time and was told that it wasn't surprising, that the anesthesia, the prep (which was difficult), and/or the procedures themselves could trigger an exacerbation, much as an infection or virus can.
I just did a colonoscopy in November. Could take all my meds. Could not drink the stuff though. Kept throwing up. Called the doctor in a panic and they had me switch to Gatorade and miralax. They did put me fully under anesthetic for the procedure. I was out for just over an hour. Best sleep I've had in years!!
Erash, it's Fancy1959. I think that's extremely probable and possible. Anytime you use general anesthesia it puts the stress on the body and it takes a while to clear from the body. On top of that having said all that everybody body's handles it differently. When my husband had his second one done earlier this year they use general anesthesia. When I had mine done several years ago I also have general anesthesia used on me. So I guess it's up to the doctor and what he or she prefers.
I know the prep is nasty beyond belief but ladies and gentlemen it sure is a lot lot lot better than getting colon cancer. So everybody please please do the prep and get your colonostomy on schedule as your physician. If we can be tough enough to fight MS, year after year, we are certainly tough enough to get our colonoscopy as schuled!
Fancy1959 Jesmcd2 WAshingtongirl
So I did some searching and I see that there's some confusion in terminology. Some call the use of propofol general anesthesia and some call it deep sedation. Often propofol is used to initiate intubation. But propofol can be used w/o intubation too.
I've always considered general to be with intubation. That's rarely done for a screening colonoscopy except in cases where there might be underlying respiratory concerns or greater risk of aspiration with deep sedation alone (or perhaps other medical conditions)
I found this on NMSA nationalmssociety.org/Livin...
Ancedotelly, I read reports of some with MS having relapses with the stress of procedures. Some also discuss body temp increases that contribute to problems (I don't think that's with propofol but with the drugs used with intubation--I'll have to do more research!).
I also read someone's story about propofol relieving their MS pain and spasticity at least temporarily.
I think I'm going to run all this by my neuro.
Thanks! All for your input 💕
Thank YOU erash for taking the time and looking that all up, and then clearing that all up for us! 💕
All I know is with my luck, something is bound to go wrong.😒
Good article, erash . Thank you for researching and sharing it. Let us know what your neuro says. I tend to think docs are willing to take (or for their MS patient to take) the slim chance of an adverse reaction rather than skip the procedure entirely.
Just the thought of colonoscopy is stressful to me and I really do not stress out over much of anything. So Far I've avoided it. I'm 69 now. Yes my doctors are upset with me. I was wondering about the cologuard myself. My PCP said he would look into it, but never got back to me. What else could cologuard comes up with? At least if it were something important it would be worth looking into perhaps? If I had to get a diagnostic colonoscopy it would be worth it. At least I would have a definite reason to get one. My husband has had two. Both were normal. The second time, the prep was easier than the first which was 10 or 11 years before the second. I just read a story in the paper about someone who had a colonoscopy around age 70 and was told it was normal and he didn't need to get it again. Then sometime later he wasn't feeling well and he found out he has colon cancer. Go figure! My MS has been fairly symptom free since I was diagnosed 12 years ago. If there is some causal factors from stress of doing this exam or the exam itself on relapses with MS, it would not sit well with me.
itasara
I was told the cologuard is apt to find very small 1mm lesions that will be unlikely to be clinically meaningful. But u don't know this until u hav the dx colonoscopy.
since screen colonoscopy are free under ACA (obamacare) the diagnostic will incur $ and might need to be a longer procedure as they try to hunt down the very small lesions.
However, I'm. Now reading about people who have died with the sedation propofol 🙁...I'm going to stop reading 😬
I'm sorry, but lm sitting here reading this erash and lm just a laughing!!!😄😄 Inappropriate? Idk but.😄😄
J 🌠
Jesmcd2 im referring you for treatment for PBA 😜
I know, not funny but I couldn't resist.
I think I should have become an engineer like my brothers where there is more concrete evidence than the hemming and hawing in medicine!
Hi guys,
I'm wondering if perhaps a relapse could be triggered by the fact that most of the lymph nodes in our body are along the GI tract? The prep certainly gives the GI tract a workout and I would think this directly impacts those lymph nodes as well. Since lymph nodes are part of the immune system, that would make sense that our MS would get stirred up.
There has also been a lot of talk about the gut biome and how the types of natural gut bacteria we have may influence MS. I would think we are essentially "cleaning the biome slate" during the prep. This imbalance may be a factor in relapses. On the upside, and this is just a personal theory, AFTER a colonoscopy might be the ideal time to re-colonize the colon with "better" strains of bacteria via probiotic supplements?
I often have colonoscopies (every 1-2 years) for inflammatory bowel disease. I haven't actually noticed any MS relapses or worsening though. Perhaps I have not been paying enough attention to that. I am always so relieved that they're over that everything seems great at that point!
I wanted to offer a couple of other comments about the prep, if I may, for the benefit of MSers. There are alternatives to the magnesium citrate prep which we all hate. There is Prepopik which is great. It is so much more palatable than magnesium citrate. Ask your doctor for it! There is also GoLytely which you have to drink a lot more of than you do with magnesium citrate, but is so much easier to drink.
**There is one important caveat though!!** If you have "bad" MS, the Prepopik or GoLytely may not be enough to give you adequate prep. I don't know how else to characterize "bad" other than to say, if you believe the motility in your colon has been slowed down by MS, you need something stronger to clean you out. If you're newly diagnosed with a good EDSS (i.e. regular walking, etc.), and/or you are very "regular" in terms of GI function, you may be fine with GoLytely or Prepopik. I, on the other hand, do not fit that description and learned the hard way that Prepopik was not the best option for me. You can imagine that I was ecstatic to learn of an alternative to magnesium citrate! When I did the prep I could tell it probably wasn't enough. Well, I arrived at the clinic and was scoped but was sent home for another day of prep with GoLytely and had to return the next day for the procedure. Not fun.
In the future, my GI doc says I need 2 days of "prep" because of my MS slowing my colonic motility. I could probably get adequate prep with 1 day of magnesium citrate, but will opt for 2 days of GoLytely or 1 day of GoLytely and 1 day of Prepopik any time. So I hope this information is helpful to my fellow MSers as they plan for their colonoscopies. Ask your GI doc what prep they recommend for MS patients. (Incidentally, I don't believe my IBD was a key factor in the difficulty prepping. My IBD has been very quiet while taking my MS DMT. Both are inflammatory diseases. This further points to the connection between the GI and immune systems. Anyway, I mention this because my doc says it was the MS that was making the prep more challenging.)
I echo others' sentiments about the need to have regular colonoscopies. They're too important to skip.
Thanks for raising this important topic, erash!
Thanx! Nom_De_Plume interesting thoughts...
MS relapse indications
AND NOW ANOTHER RELAPSE
IS THIS CONSIDERED A RELAPSE?
