New here, questions about treatment & colonoscopy

Hello, I am new to posting but not new to UC and have been reading here for quite awhile. I was diagnosed in 2010 and have been on Entyvio since 2018. I live a pretty normal life but always seem to still have a bit of “active disease” when scoped. My GI doctor who I loved moved out of state last year (I actually cried). However, she had talked about the possibility of adding Azathioprine which after research I was not in favor of doing. We moved about 6 months ago and I now have another new GI doc. I’ve only seen her once so far but my first impression was that I liked her. I’m scheduled for a scope in mid January. Symptom-wise I am doing well as far as I’m concerned but a recent FCP came back elevated at 206. My goal is to be on as few meds as possible and the safest ones I can. I also take curcumin and vitamin D and I recently added a probiotic as well (thinking it could help with that bit of inflammation?). I am also on Lialda as prescribed by my last doctor but admittedly bad about taking it.

I have two questions, one pertaining to treatment and one to the scope itself. I like the safety of Entyvio and have had no noticeable side effects. If after my scope this new doctor wants to tinker with my meds, does anyone have an opinion on changing meds vs. adding something? Second, this doc prescribes the Miralax prep which I have done the last 3 times but with mag citrate. Before, it was dulcolax, mag citrate, and 64 oz of the Gatorade/Miralax night before and second bottle of mag citrate the morning of. I was never able to do the second mag citrate and my prep was always adequate. This one has no mag citrate but you do ANOTHER 64 ounces of Gatorade/Miralax the morning of. I think they’re out of their minds and don’t believe for a second I’m going to get all that down. Has anyone else done this volume of prep before?

Happy to answer any additional questions, I didn’t want this to get too long. Thanks!

Thank you for that information about Entyvio and Azathioprine. I wasn’t aware of that. When I mentioned to my new doctor that my former doctor had floated this idea, she didn’t seem like a fan. I don’t know what her recommendation will be if there is inflammation on this scope, which I expect there probably will be. I have heard of going to every 4 weeks on Entyvio but I thought that was more if your medication levels were below where they should be at the end of 8 weeks, and both times I’ve had mine checked my levels were good. My former doctor had told me that in that case, increasing the frequency wouldn’t be beneficial. I find it a little puzzling though because I am doing really well. Even what could have indicated inflammation was present before (occasional urgency/diarrhea) seems to be gone now. Recently, even at times when I figured I was surely going to pay for something I ate/drank the next day, I didn’t. It’s hard to think about messing with things when they are good!

Thanks again!

That’s interesting about the dosing level for entyvio, so thanks for that Beave. I’ve always wondered why entyvio isn’t weight based like remicade. I seem to always have a more “sensitive” reaction to most meds , as in they affect me more per dose than others and always attributed it to my small size.

7+ years on entyvio here and full remission! Wishing you luck Natty! Update us after your scope! BTW my GI that set me on my road to remission moved out of state and I’ve shed a tear or two about that too!!! He is a great Dr!

Beave, that makes sense and is something I will certainly ask my doctor about if it comes to that. Not that I’m a particular fan of going to every 4 weeks, but maybe better than alternatives. Maybe it would be temporary and I could go back to every 8 weeks if it kicks that inflammation?

Flowersgal, yes, I totally understand! I had not been under the care of a GI for about 7 years after my initial diagnosis. I had spent those years doing pretty well without medication (I’d liken it to IBS, which maybe I also have) until I got pregnant with my youngest. When I started to flare around 8 weeks, the first doctor I went to was a jerk and didn’t want to deal with someone who was pregnant so he referred me to the doc I ended up loving. She was great and got me on a good road during pregnancy and after when I flared again. I have been happy with the way Entyvio has worked for me overall and hope if there is still inflammation that we can take care of it in a way I’ll be comfortable with. I am a creature of habit and don’t like change. I would be thrilled with a pill vs. infusion but not if it carries more risk than my current meds. That’s what I’m hoping to avoid, especially because I am doing so well overall.

Old Hat, exactly! With the mag citrate prep, I never was able to get that second bottle down. The first time I flat threw it all up. The second time I prepared it as a jello but couldn’t attempt it. The third time I didn’t even buy the second bottle because my previous experience was that I was cleaned out just fine. When I have an issue it’s always diarrhea. I don’t seem to have a problem getting my colon clean! I guess I will just do as much as I can. I’ve really never completed a prep exactly as prescribed and haven’t had an issue so far.

Quincy, thanks! I can (physically) but it’s not what this doctor prescribes. My daughter also has to get one done with the same doc the week before mine (first time) and she is so upset about the prep, mostly because she has very high metabolism and is always hungry. So I asked the nurse if there was another prep she could do and she basically said no, which I know is a crock because people do different preps and we’re all getting the same thing done. I myself have never done 128 oz before and I have never done additional prep the morning of. Like I said, with the mag citrate one where I was supposed to do a second bottle, I never did ( and that’s only 10 oz). I couldn’t. I believe my scope is at 9:00 with an arrival time of 8:00.

Re: prep types and cleaning out. A time or two when I’m waiting for my procedure — which is running way late and leaving me feeling even sicker from dehydration— I’ve heard comments/apologies from Dr and nurses that they’re running late because someone wasn’t very cleaned out and the procedure takes longer then.

So I assume that’s why drs get so adamant sometimes about sticking to a certain regimen — however IMO a good Dr will realize that noncompliance due to bad taste/inability to tolerate prep is the bigger reason and each patient should be able to use the prep that works best for them

I always use suprep so have no experience of mixing. But I do like the pineapple flavored coconut water. Seems to help me with dehydration/enzyme depletion.

CCinPA, yes, that’s the same prep I had before plus the mag citrate. This one is twice the Miralax/Gatorade but no mag citrate. I’ve never done this volume before. I’ll get down what I can. Constipation has never been a thing for me, always the opposite, so cleaning out hasn’t been a problem in any of my scopes so far. I was just flabbergasted when I realized it was twice the volume!

Thanks for that info about FCP. The last time I had one it had been perfectly normal but the reason my doc at the time had ordered it was because she’d seen some active disease on my scope the month before and wanted to check it. So I don’t know just how indicative they actually are since it didn’t indicate inflammation even though she’d seen some. The other thing I wonder about is whether the violent prep itself causes the inflammation that they see.

My only concern with a change in meds is the risk vs. reward aspect because I have been pretty happy with how I’ve been doing on Entyvio. I lead a basically normal life. I generally don’t have to alter my day to day because of my disease. I walked a 12 mile pilgrimage for the second year in a row in October with very limited bathroom access with no issues. I never would have done that if I was having issues. I am going 1-2 times a day, usually formed BM’s. I’m not completely symptom-free but overall I wouldn’t consider myself to be in a situation where I need something more. But if the doc sees inflammation she’ll probably want to do something like my former doctor did. Is it riskier to change things or to leave it bubbling in there? I don’t really know.