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In Limbo - No Doctor...HELP!

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Ulcerative Colitis
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Posted 7/27/2017 6:15 PM (GMT 0)
Hi again everyone,

Just want to thank you all for answering my many many questions lately! This forum is a life saver!

I thought I had a handle on this disease. I was wrong. I've flared once when diagnosed in Oct 2016 and recovered pretty quickly after the colonoscopy with steroid enemas.

I've recently started flaring again. When I called my doctor's office about this, I was told my doctor left the practice- thanks for the heads up guys. They set me up with a new GI doc but the soonest appointment was 4 weeks out (now next week). The only contact I've had is an NP who is semi-helpful. She prescribed more steroid enemas and upped my Lialda to 4 a day. Been on the enemas for 2.5 weeks and have seen no reduction in blood/mucus. No D, but having some urgency (3-7 times a day in the bathroom). They tested me for CDiff/Calprotectin and the NP won't move forward with anything until those results are back. In the meantime I feel like I'm in limbo. Some days it seems like things are a tiny bit better, than the next day it seems like more blood.

I'm terrified of predisone but am guessing that will be the next step since the enemas aren't working. Why aren't they working??? Should I try to do both Rowasa and Hydrocort? This is hard as I work all day and def can't do either one in the morning (too many bathroom trips). Could I do one at 5pm and the other overnight?

Feeling very lost. I just want a plan of action to get this under control. I think I convinced myself I was a mild case since the first flare ended pretty quickly. Denial is fun for a while.

Any insight always appreciated. Thank you all!
Posted 7/27/2017 6:21 PM (GMT 0)
Yes...try the Rowasa. I would suggeat to change from the culturelle to another probiotic. Ask for an antispasmodic like Bentyl.

Is the steroid enema a foam? If not ask for proctofoam and use it during the day.

Were you completely off the enemas before this flare?

q
Posted 7/27/2017 6:22 PM (GMT 0)
Well, you still could be a mild case......I am pretty new here, but have read a ton of posts and it seems to get repeated over and over that the rectum is a stubborn area to heal. AndI assume since you are seeing blood and using enemas, that your inflammation is lower right now? mine is, too and mucus and blood are my main symptoms.

It took 3 months of enemas now for me to stop seeing mucus. And even so, I have seen blood about once or twice a week for the past 2 weeks.

I just think this is a slow process. Maybe because as we heal, the still roughs things up again on it's way out?

I better stop speculating....but I would definitely think remaining calm and optimistic is warranted. Plus, it's fantastic that your appointment is right around the corner, too. It's tough to do sometimes, but worrying and anxiety aren't our friends.
Posted 7/27/2017 6:37 PM (GMT 0)
Thanks for the responses guys.

Quincy, I'm not using the foam- just the regular enema. I could definitely look into that but just spent the money on more enemas so might use those up first. And yes, I was completely off the enemas before this flare. I used them for maintenance for a couple months after my last one but sort of just stopped (stupid I know). But I was feeling so normal I sort of convinced myself it was all good.

MarjiKay, yes I try to remind myself it's a slow process. I keep comparing this flare to my last and those steroid enemas worked in a matter of day to get rid of the blood. Trying to stay optimistic and not stress, which I'm not very good at. In addition to this flare, I just found out I'm low in iron again and a few days later I felt a nice bald spot on my head (which happened a couple years ago when my iron was super low). So now I have that to freak out about too, which is not helping. I just started taking my liquid iron supplement again, which I've heard can be a no no. Wanted to see if it makes things worse.
Posted 7/27/2017 7:00 PM (GMT 0)
Yeah, I totally understand where you're coming from. My first flare ended in 30 days from a steroid enema, too. I was in remission for 8 long years, too. This one seems much more stubborn and different somehow....oh well, stress complicates things so just relaxing as much as possible is best for us both.

I took iron for awhile myself thinking I was low on it, the red pills, and WOW did I have a weird reaction. I quit it after a few weeks and I am glad I did. I just had blood tests run recently and my iron and ferritin were both fine.

Good luck on things!
Posted 7/27/2017 7:11 PM (GMT 0)
If your iron isnt low....dont take it. It being a no1no isnt a proven thing. How would you know since you're early in a flare treatment?
Confusion of symptoms will cause more distreas.

We've all tried going off meds at least once. Understand why and how the rectals are a good plan.

Have you had b12 checked?
q
Posted 7/27/2017 7:20 PM (GMT 0)
My iron/ferratin is low. They checked it a couple weeks ago when doing all my other blood tests. Not anemic yet, but just about there. I'm guessing the bleeding from this flare is not helping that situation at all. I'm hoping the liquid iron I took previously (before UC) will agree with me this time too. I never had any constipation or the usual stomach issues that can be associated with it.

B12 is good. Vitamin D was low a couple months ago when checked but I've been taking supplements for that.
Posted 7/27/2017 7:28 PM (GMT 0)
If no problems with it in past....seems you will need to take it.
You can up your food intake and vitamin C to help absorption.

Good b12 is good. Good you're on d supplements.

Please consider another probiotic.

q
Posted 7/27/2017 7:40 PM (GMT 0)
Quincy, just wondering the reason you are suggesting switching probiotics? I thought Culturelle was an OK one. Any suggestions for something better?
Posted 7/28/2017 3:12 AM (GMT 0)
Culturelle is only one strain, i think varied is better and Culturelle a good start but not enough. My perspective, and most do have a rhamnosus plus others for good gut health.

The ones I use are in my signature....im really liking the Geniune Health Advanced Gut Health. I take 2 of the 15 billion nightly plus one of the UFCC.

q
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