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not sure I should have started Pred so confused!

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Ulcerative Colitis
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Posted 8/19/2017 11:34 PM (GMT 0)
So up until now I've been pretty 'lucky' diagnosed 11 years ago proctosigmoiditis mainly been able to be managed with pentasa maintainence then upping during flares.

Until now. I've been flaring prob for 3 months now, mucous, blood, urgency, the odd accident, close calls and oodles of stress about having accidents. Upped pentasa and started colifoam. The mucous/blood sometimes improved but not the urgency and then it got unpredictable, wouldn't go in the morning as usual and would catch me out later. This wasn't great for anxiety. I had just started a couple of pentasa enemas and was having a follow up with my GI & given the changes he suggested a sigmoid scope to see whats going on (I also have IBS)

I was awake during it and he said it was very inflamed and could see why I was having problems. He classed it as moderate up to 35cm. I had biopsies not sure what results are yet. But he said I needed prednisone as been going on too long so on it for 2 weeks @ 20mg.

I wasn't sure I should start pred - never had it before ever (I had only just started enemas & was only on 1600 ascaol vs 4mg pentasa) but he said I should up asacol, still do enemas + prednisone to get it under control. And thinking about it colifoam and 4mg of pentasa hadn't really delivered anyway.

I'm just quite confused about it all and slightly wired on pred TBH.

Do you think I should have started pred? I'm freaking out a bit reading about all the side effects etc. and coming off it although I am enjoying the energy to finally get a few things done. I've def put on some weight got an appetite finally, sleeping not too bad taking melanton if needed but def feel wired and have the worst breath.

What is the best thing I can do to make sure doesn't flare bad again once off pred as in a week I need to start tapering.

Like how often do you think I should be doing the enemas (I'm aiming for every 2nd night)

And I'm trying to be much more religious with my asacol, I always take the 2 at night but would sometimes forget the 2 other ones.

Also in other fun news - I would say now I'm erring on the constipated side in the last few days I've only done the odd tiny pencil poop. but then if I need to go out I get anxious and that can bring on an episode but last few days not as bad so fingers crossed. I almost find the constipated side more stressful because at least in the morning I knew it was mostly 'out of the way'. Now its like who knows when its going to hit - the other weekend was just as I was about to go to a kids party at 3pm it was a mare - it's like annoying body you've had all day and now you decide now - now?! Last night I hadn't been hardly at all and had to go out to dinner which of course made me anxious I felt the slight need to go but I was too scared as often once I start I can't stop (& I was at a restaurant) but I actually held on almost like a normal person. Still haven't really been properly in 3 days.

Should I take fibre supplement? gawd I hate this disease one minute its worrying about pooping yourself then next its worrying about not pooping enough! I definitely have some weird body/mind/anxiety things going on like a weekday when I'm rushing around to get to work I go constantly in the morning, then the weekend when I'm home and relaxed sometimes won't go at all. Now I'm on pred sometimes won't go weekday morning either, but then next day will be bad, guess its got to come out some time!

I'm slightly freaking about being on the pred, I'm slightly freaking about coming off it. He said if this doesn't get it under control will need to try something beginning with Anxthropiane (sp?)

Sorry I'm not sure if the above makes any sense but I'm just so confused and if you've got this far thank you!
Posted 8/20/2017 1:00 AM (GMT 0)
Update - went properly first time in 3 days but yup timing was impeccable as usual was in car about to take kids out piled them all back inside & went normally - result! Thought that was it then then had to stop twice in the next 20 minutes at various public restrooms while we were out in car didn't seem to be blood or mucous but mega urgency I literally had them sprinting with me to make it in time. It was soooooo close to accident.

So over this!

I think I prefer full on colitis symptoms at least it's mainly in morning & more predictable.

I've had porridge last two mornings trying to increase fibre & being drinking lemon & water maybe I over did it. Or maybe there is no working anything out!

Thanks for letting me vent
Posted 8/20/2017 1:09 AM (GMT 0)
Hi, I think you GI was correct in giving you Prednisone as it sounds like you need it, and whilst it can sometimes cause people problems that is often if they have been on it long term. It can be a great drug to get you out of a nasty flare. With regard to the enemas, I think every other night sounds about right but you will have to see how it goes...

Try not to forget to take your Ascol especially now when you really need it..but I think you probably already know this!. I agree with you regarding constipation being the worse thing!!! I used to freak out a lot if I got constipated, I couldn't bear it. Just eat the right foods that help you poop.
Posted 8/20/2017 1:28 AM (GMT 0)
Thanks Samantha. did you ever add a soluable fibre supplement? The dietitian at the GI office said I could try very small amounts like 1/4 teaspoon & build up every 3 days to see how I go. It seems weird to take this given the diaoreha I was having but she says it can actually help bulk up too. And this irregularity is driving me nuts. It's like replacing problems with different problems but they all equally suck
Posted 8/20/2017 2:30 AM (GMT 0)
I had a period of time 6-9 months where I took a half dose of fiber daily and it was very helpful and didn't cause diarrhea.
Posted 8/20/2017 7:09 AM (GMT 0)
Great I'm going to get some tomorrow see if it helps so over this
Posted 8/20/2017 11:59 AM (GMT 0)
sounds like you've had one of those rare encounters in life: a knowledgeable dietician !
Posted 8/20/2017 3:24 PM (GMT 0)
I never had to take anything, because I was lucky in that it never lasted long. I hope it works out with the soluable fibre supplement and you get some relief because as I said there is nothing worst than constipation in my view.
Posted 8/20/2017 4:43 PM (GMT 0)
Actually doesn't sound like you need prednisone.
You could use cortifoam during the day and the pentasa at night. What dosage are the pentasa enemas?

q
Posted 8/20/2017 11:03 PM (GMT 0)
enemas are 1g per 100 I asked doc if there was higher available here & she looked it up she said no. Will ask my gastro next week.

I've only got 3 days of pred left until I cut down to 10 so guess I see it through now. My gut said to challenge the GI harder as I had only just started enemas & although I'd been on 4mgs of pentasa was only prescribed 1600mg of asacol which I had to remind him (when I first saw him he thought we might be able to just up rectals) but then I'm also desperate for this flare to get under control & 4mgs of pentasa & weeks of colifoam prior hadn't been enough. Once he saw the inflammation in the scope & given how long this flare has been he was pretty adamant about pred & upping asacol & keeping enemas. He said leave cortifoam now given that's a steroid & im now on oral steroids.

Do you think pred could be making me constipated some days?

Mind you was a work morning this morning & I was back to 7 times all in the morning & urgency.

Could my bowel please just be a regular bowel?! darn diseased bowel. Gah.
Posted 8/21/2017 7:57 AM (GMT 0)

TroubledTurds said...
sounds like you've had one of those rare encounters in life: a knowledgeable dietician !

LOL I know right. I've seen a few over the years I'm hoping as this one is dedicated to the GI office she might know what she's on about
Posted 8/21/2017 12:29 PM (GMT 0)
Generally it is recommended to be on at least 4,000mgs of oral and 4,000mgs of rectal-route mesalamine/5ASA. The max on pentasa oral is 4,000mgs a day. Rectal-route, you can see about getting the 4,000mg enemas if they are available within your area (not all countries have them). You can always ask about mesalamine rectal-foams and suppositories and do multiples (say an enema in the PM and a suppository in the AM).

The one thing UC never, ever gives us is predictable bowels. 1st day I will poop once, 2nd day I will poop 4 times, 3rd day I will poop 2 times and so on. There's just no knowing adds to our anxiety: If I knew I poop twice every day then there'd be no guessing "am I truly done now?". Instead I worry, what if today is a 4 day, I'm away from a bathroom and it is urgent... Thanks UC...

Constipation is often from rectal inflammation. As you heal you will have less episodes of constipation.

Skinny, pencil width stools are a sign of rectal inflammation. Inflammation thickens the walls of the large intestine and rectum, which makes the inside diameter (where stool passes) much, much narrower. In fact, really, really badly inflamed areas can prevent an endoscope from passing through.

"need to try something beginning with Anxthropiane (sp?)" That's Azathioprine/Imuran/6MP, an immunomodulator. If the max dose mesalamines aren't enough then it is a good idea to try the azathioprine. It's a slow acting medication though, and expect 3 months before you see results. I've been on 6MP for 3+ years and have yet to experience a side effect.
Posted 8/21/2017 2:35 PM (GMT 0)
Runae...call your pharmacy and see if they can get in the 4g. Then ask your doctor for it.

q
Posted 8/21/2017 4:41 PM (GMT 0)
I think the pred is 100% needed (sorry quincy). It sounds like you have inflammation going on (pencil thin stools, urgency, constipation). If you almost have an accident and need to sprint to the bathroom, that's not a good sign.

As long as it's a short run there shouldn't be many big side effects, it doesn't sound like the pred is doing much though. Upping rectal meds can't hurt (if they work).

Good luck.
Posted 8/21/2017 5:03 PM (GMT 0)
It's a pretty bad flare if 20mgs of pred and colifoam (a hydrocortisone, steroid foam) combined aren't touching it.

Are you taking both simultaneously?

Any improvement at all?

Did you have your stool tested for potential pathogenic causes like c diff?
Posted 8/22/2017 9:35 AM (GMT 0)
My doc said to stop the colifoam as I'm now taking oral steroid & had been taking Colifoam for a few weeks prior to starting that. I haven't had a stool sample.

In the last few days I've started to move on from the pencil poops they're more formed.

Haven't been getting blood & mucous has almost gone (realize it's early days) but irregularity an issue. ie constipated hardly going for a few days & ability to actually hold on. Then urgent, loose almost accidents the next. I'm hoping things will start to even out & am starting to take benefiber. I'd honestly rather go back to 10+ times blood & mucous in the mornings every day than this unpredictability. Perhaps it will go back to that once I stop pred. I hoped pred might be a miracle as I'd read people going to 1 formed poop a day. If only.
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