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Upcoming scope- Update at the bottom

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Ulcerative Colitis
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Posted 1/6/2019 8:09 PM (GMT 0)
Hello all,
I have a scope this Tuesday at 8 am to see what is going on. My own doctor has been out of town for 3 weeks and I have been working with the doctor covering for him. He thinnks I have become steroid refractory and I have been on 40 mg of pred now for 2 weeks. Haven’t seen any bleeding since and I’m only going 1-2 times a day with excellent stool quality but every time I taper below 30 mg the bleeding comes back, full on liquid, big clots, scary stuff! We did all the blood work to start 6 mp and are waiting until the scope to make a decision in case they think I need something faster acting. I also have appointments with 3 new gi’s in the next few months at the suggestion of the doctor covering for mine (and my husband’s Step father who is a GI at UCSD). I am going to shop around for someone I really like, although I like my doctor, he is retiring in June and I need a plan in place.
That being said I have a couple of questions, (and I will call my doctor who is back at work tomorrow and doing my scope Tuesday):
1, the day of the prep should I bother taking all 4 of my 5ASA’s, I’m just going to poop them all out, right?
2, I should wait until after my scope to take the pred and the 5ASA, right? Last time I was scoped I was just on two lialda and doing great so I waited until after the scope. My last scope in late 2015 was really good. Thanks!
Edited for typos

Post Edited (momto2boys) : 1/8/2019 10:58:49 AM (GMT-7)

Posted 1/6/2019 8:20 PM (GMT 0)
Depends on when you take the morning meds and when you start the prep....what will you be using?
q
Posted 1/6/2019 9:26 PM (GMT 0)
I usually split my 5 Asa does am and pm, pred all at once in the am.
I start my prep at 2 pm, two bottles of magnesium citrate and Gatorade is my prep.
Posted 1/7/2019 5:00 AM (GMT 0)
Since you're doing early prep, I would say don't take the 5ASA, but do take the pred since it's systemic. Have a bite of something if you're supposed to take it with food.
Start them again after the scope with breakfast.

Let us know how the prep goes.

q
Posted 1/7/2019 1:35 PM (GMT 0)
I would take the pred as scheduled, it is absorbed high up in the digestive system in the stomach and small intestine. Skipping pred can give you withdrawal symptoms, so I would not recommend.

You can delay the mesalamine to later in that day if you prefer, no harm in waiting a few extra hours and taking those pills. I've forgotten to take my morning mesalamines, and took it within the afternoon without issues.
Posted 1/7/2019 2:55 PM (GMT 0)
took my pred and 2 lialda this morning, I may still take the other two in a bit. Waiting to hear back from my doctor about tomorrow, but I think since my scope is at 8 am it will be ok to delay taking everything until post-scope tomorrow.
Posted 1/7/2019 7:47 PM (GMT 0)
It will be fine.
Let us know how it went.

q
Posted 1/8/2019 6:05 PM (GMT 0)
Shoot- lost my post:

Home from the scope and it was pretty good.
My doctor was concerned that my disease had spread, but as it turns out, the only redness/irritation he saw was in the rectum/distal sigmoid (6-8 inches in). I had no polyps at all, not even inflammatory ones, so that's good.
I got the go ahead to start slowly tapering prednisone. I'm on 40 mg now, so alternating 37.5 and 35 for 4 days, then 35 for 4 more, etc. I have an appointment with a new GI in the same group as my retiring doctor next week and my current doctor thinks he may want to add 6MP, so we had all the testing done for that and I am good to go should we choose that route, he just doesn't want to make that call. He also thinks that he under treated the severity of this flare up early on (which is what I and many of you said) which is how I have ended up yo-yoing on prednisone doses since November.

Prep was interesting this time around. I had to take a 3rd bottle of mag citrate instead of the usual 2 because by 8 pm I was still no where near clear. Thankfully my husband ran to the store for an extra and I was up a little later than I wanted to be clearing out, but was told my prep was excellent so I am glad I did it.
Posted 1/8/2019 6:59 PM (GMT 0)
Glad the scope went well!
Posted 1/8/2019 7:43 PM (GMT 0)
It's good to hear that the scope was not bad but I do not understand why you would go on 6mp and not a biologic. I think the immunomodulators like 6mp were linked to skin cancer and they take longer to work. The new standard is to go right to the biologics from what I understand and unless it's a cost issue- there is no advantage to taking Imuran or 6mp (other than they are pills). They are not any safer than the biologics either. I was just curious why that would be the next step. Hopefully you can wean off of pred without needing to advance to anything.. fingers crossed.
Posted 1/10/2019 7:20 PM (GMT 0)
Hi mom....good all went well regarding prep (excellent idea to use another bottle) and polyps. I dont remember the extent of your original diagnosis.
The alternating method of pred taper will be helpful.
I hope that the sfRowasa will be in and you can start them soon.

Keep us updated on the biopsies results.

q
Posted 1/10/2019 8:06 PM (GMT 0)
Thanks, Quincy!

I called about the sfRowasa today and then also called Expressscripts, they said they can ship it out on the 14th so I should have it in 2ish weeks! I have never been so excited to get an enemasmile

Initially my diagnosis was to 24 cm plus a cecal patch in 2013. My 2016 scope was 26 cm. And I mis-typed post scope, inflammation was just 6-8 cm, not inches. Of course, pred helps with that. I am using Canasa during the day and enemas at night to try and zap out that pesky rectal inflammation. I am using an alternating taper for now until I see the new GI on Wednesday and see what he says.

Had my first BM post scope this morning with a tiny bit of pink mucus, but I will blame that on biopsies for now, if things look funky tomorrow I will alternate 40 and 37.5 instead of 37.5 and 35 as I have been.
Posted 1/11/2019 7:35 AM (GMT 0)
You can have wonky pink mucus or bms for a day or two from biopsies and depending on how many were taken.

Cecal patch still showing on this scope?

Seems much better than last scope...woohoo.
Hope healing continues smoothly and that the enemas help bigtime once you get them.

Thanks for the update,
q
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