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iPoop
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Joined : Aug 2012
Posts : 16404
Posted 11/8/2018 1:06 PM (GMT -8)
Oh and responding to the pred and your bms dropping to 1, is a thesis-level-proof that there was inflammation in your intestine; despite that pesky blood work saying normal. More or less a "told ya so" from you to your doc :-p
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simon71
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Joined : Feb 2018
Posts : 88
Posted 11/9/2018 10:13 AM (GMT -8)
yup....very true.

I think the pred is still working but this morning was another battle. Not too bad.....3 visits and some blood....
Hopefully the prednisone will allow it to heal over the next few weeks.
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simon71
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Joined : Feb 2018
Posts : 88
Posted 11/10/2018 6:55 AM (GMT -8)
yet another typical morning. Less trips to the bathroom so far but the first was gassy, watery and had blood. 3 trips so far in a couple hours.

I have the feeling of a hangover when i wake up too. That has to be the prednisone. I take it in the morning and by the time i wake up i figure it is almost out of my system. I wonder if that is withdrawals. After i take it again in the morning it goes away.

This morning i took it and i could feel it lift about 10 minutes later. I was a tired train wreck with a hangover type headache and felt like i hadnt slept (although i slept for 8+ hours). 10 minutes after taking the pills i felt this lift up and the headache was gone in the matter of time it took to take 1 or 2 breaths. Weirdest feeling but now i feel normal. No headache....a bit tired.....no real motivation but that might be a combo of the fact that i woke up and it is 15 degrees F outside this morning. Freezing!
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geezernow
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Joined : Nov 2017
Posts : 309
Posted 11/10/2018 5:26 PM (GMT -8)
Simon...dry heaves of the butt, urgency like...gotta go NOW!!! Yup, you're in a flare and need to soak in what IPoop is kind enough to share with you. Stick with it and good luck.
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simon71
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Joined : Feb 2018
Posts : 88
Posted 11/12/2018 11:09 AM (GMT -8)
day5 on the 40mg of prednizone and 6mp. A bit better. I start tapering the pred in another day so hopefully it does start getting worse again. I can still tell i am in a flare. Still lots of gas, some blood....but less liquid so that is good.
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iPoop
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Posted 11/12/2018 11:21 AM (GMT -8)
For optimum results, you should be 90% healed (or more) before you get below 20-mgs of pred. As you heal the most at higher dosages, once you get below 20-mgs you are merely holding-ground you gained and not continuing to improve any more. Your body normally produces about 10-12 mgs equivalent of cortisol a day (prednisone is synthetic corisol).
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simon71
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Posts : 88
Posted 11/12/2018 11:23 AM (GMT -8)
good info. I will be in 30mg for another week...and then 20 the week after that. I hope that is enough to shut this down.

Thank you.
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jujub
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Joined : Mar 2003
Posts : 10424
Posted 11/12/2018 7:50 PM (GMT -8)
simon71, as a 22-year veteran of ulcerative colitis, let me tell you I don't think anyone with UC, whether it be mild or severe, flaring or in remission, is obligated ever to feel "lucky." I had a completely uncontrollable six-year flare during which I many times wondered why I couldn't just die. After starting on Remicade, I've been fortunate enough to have a 16-year remission. Yes, health insurance, the best you can get, will be essential. Without it you may be bankrupt and still not have an acceptable quality of life. I hope you're able to get this all worked out and get a treatment plan figured out with your doctor, and are soon feeling better.
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simon71
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Joined : Feb 2018
Posts : 88
Posted 11/13/2018 4:57 AM (GMT -8)
thank you for your kind words. I am going to get the lowest deductible / highest premium that my work offers for next years coverage just to see how it goes. The costs add up fast. I cant believe something like this doesnt qualify as disability. Im not trying to get out of going to work at all. I typically work 10 hours a day and hell.....i worked 17 on sunday after working 50 hours already monday - friday.....and im salary. My point is, you cant work.........at least not effectively. You are constantly running back and forth to the bathroom and your anxiety levels go crazy because of the unknown both by yourself and the doctors which makes matters worse. The mental part of this is pretty tough as well. I just want to be over with it but if it is always there its just so depressing to to think about. I am a pretty simple person. I wake up, i go to work, i come home. Outside of that i dont really have time for anything else. I havent structured my life around having a family or friends and now i have this. I always tried to exercise and be healthly without being insane about it and i have never really been to the doctor for much other than the occasional stitches or check up....so this is all very new to me. I think this forum and its users have been the best resource so far.
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iPoop
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Posted 11/13/2018 6:18 AM (GMT -8)
Best you can get is temporary disability with UC. Surgery is considered a cure for us, so long term disability is generally not given.

Not sure your occupation, but over the long term some of us choose less stressful lines of work. Working 50-60 hour weeks is just nuts.
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simon71
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Posts : 88
Posted 11/13/2018 7:20 AM (GMT -8)
yeah....i know. Salaried doesnt help either but ive worked 20+ years to get here. I dont know if it is worth it or not to be honest. In the end, if stress is a "factor" then perhaps not. I do enjoy what i do. I dont really have plan B and i am not really good at anything else.

I would hate to throw away 20+ years of experience and hard work just because of this. Again......it just leads to overthinking, stress and anxiety. In the end i just want it to all go away.......all of it...and i know that isnt an option. I know that sounds whiny but it is what it is.
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iPoop
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Posted 11/13/2018 7:54 AM (GMT -8)
Getting in a remission will take care of such worries, as you'd essentially be pre-diagnosis and able to do it. A remission state can last for years (2, 5, 8 or sometimes more years) and you'd be able to work hard like that without bathroom issues.
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simon71
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Posts : 88
Posted 11/13/2018 8:29 AM (GMT -8)
yup...thats the hope. Get into remission and thus back to normal with less of this overthinking/depression/funk. It gets to be so long that you forget what normal is like.
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simon71
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Posts : 88
Posted 11/14/2018 4:47 AM (GMT -8)
1.5 months now. I have been on 40mg of pred and starting the taper today with 30mg.....and also stopped the Lidia and started the 6AP. This morning i was still all gas and watery...some blood on the paper. Yesterday was more solid. I am worried that the drugs are not working as well as they should. Clearly it is still there and tapering off the drug may cause it to get worse again. Maybe i will shoot my doctor a message and see what they have to say.
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iPoop
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Posted 11/14/2018 9:40 AM (GMT -8)
If you're not 90% better than getting to low dosages of pred is going to be a huge waste of time (both yours and your doctors). I'm a big fan of taper as symptoms warrant, and having individualized-tapers based on how quickly you've healed and progressed. So, definitely call and update them where you are at, and ask whether it makes sense to give you more time at a higher dosage.

A typical pred taper is 2-months, start to end.
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simon71
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Posts : 88
Posted 11/14/2018 10:23 AM (GMT -8)
i did contact them today and they said to stay on the 40mg dose for another 3 days for a total of 10 days.....and then start the taper. Lets hope that is long enough. If pred is supposed to lower your immune system and my body is able to beat that at full dose and keep fighting my colon, i must have some kind of super colon (or super immune system).
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simon71
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Posts : 88
Posted 11/16/2018 9:08 AM (GMT -8)
still not out of the woods yet after 10 days at 40mg of pred. I wonder if i should stay at this dose? I was supposed to start tapering after 7 days but the DR said to stay on for 10 now since the flare is still there. I am guessing 10 days isnt enough.

Had SUPER bad heart burn last night to the point where i had to get up and walk around.I almost puked from the burning. THis morning the BMs have been frequent but solid. I ate a ton last night. I think i have been in the bathroom 5 or 6 times already today by 11am.
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iPoop
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Posted 11/16/2018 1:11 PM (GMT -8)
I'd stay at that dose for the weekend and contact your gasteroenterologist on Monday morning to report this.
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simon71
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Posts : 88
Posted 11/16/2018 6:14 PM (GMT -8)
yeah...that is what i was just thinking about. Id hate to start tapering on sunday only to have found out it is still there and comes back worse than ever..........thus wasting all that time on the pred and having all the side effects for all that time for no reason. I will stay on the 40mg until monday when i can communicate to the doctor to see what they think.

Over all i think it is getting better but i cant tell. I figure if it is still gassy and blood off and on it surely isnt gone.

It sure isnt like a cold or a headache where you take a pill and you get better. IT baffles me that it can take weeks for the drug to start kick in...but i guess it makes a bit of sense.

I was looking over my online chart and it says my doctor and i discussed diet. I assume that means the doctor and i discussed how i should be eating during the flare up. That never happened so i dont know why it says it did. I have been just eating normally....but much lighter. I had a pile of pizza last night that was likely to blame for heartburn from hell while on the pred. I tell you what........i definitely got the ravenous hunger last night from the pred. I could NOT stop stuffing my face.

What kind of diet do you all follow when you are flaring or in general? I have to imagine super light easy to digest meals so your guts heal is best. They say grains can cause inflammation so steering away form breads and grains probably isnt a horrible idea but i am just guessing.

I generally have been drinking water, soups, bone broth, hard cheeses, scrambled eggs, spinach, avacados, salmon, black coffee.....anything i read that doesnt "cause" inflamation.

I have snuck in a few slices of pizza though...and a beer here or there. Thats probably not helping but its no like im drinking a 6 pack and eating a whole pizza smile
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Celeriac
Regular Member
Joined : May 2017
Posts : 197
Posted 11/17/2018 7:07 AM (GMT -8)
My doctor recommends a low-residue diet while flaring, which is generally low fiber: no raw fruits or veggies—only cooked until soft, no fruit skins, seeds, nuts, or beans. No caffeine or alcohol.

Basically bread. Bread and soup and squishy veg and soft-cooked lean meats. And a multi-vitamin.

I don’t have any food triggers, and the low residue diet only helps insofar as it doesn’t actively hurt me. I’ve been sticking to it for a couple weeks, and I notice a bit more pain when I deviate. The goal isn’t to stop any symptoms, really, but to just not actively insult your beleaguered guts with bulk while they try to heal.

There is no quick fix. I’ve been flaring since March. [edit: this not to be pessimistic. I’ve personally found UC to be a lot more irritating if I keep assuming I’ll get a quick resolution. Once I accepted that it will be probably be months, it became a lot easier to just relax and deal with my current reality while maintaining hope that improvement will come]

Post Edited (Celeriac) : 11/17/2018 8:16:10 AM (GMT-7)

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simon71
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Posts : 88
Posted 11/17/2018 7:35 AM (GMT -8)
Thanks for the reply. I generally have still be drinking 3 to 4 cups of coffee in the mornings. This tends to get things going weather i am flairing or not. Perhaps this is bad. I will try to get a bit more strict on foods as well. I guess i dont expect a quick fix so much as i am concerned that i have been defacating blood almost every day for 1.5 months and i know that isnt normal. Something inside me needs to heal so that stops at least.

My thought is if that doesnt heal, that will lead to scaring...which will lead to much worse problems in the future although that is just speculation on my part. I mean i have cut my fingers quite badly and they have never bled this long and that is with minimal care. Definately not the same thing but at the same time i have to figure there is a way to allow the area to "rest" while it heals. Perhaps that is more liquids and less solids in my diet. I dont know......all i know is it is concerning to be bleeding internally for this long and also to be on meds for this long but still have the symptoms. I get it though....its never going to go away. I am stuck for life and get used to it. That is still very hard to accept.
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quincy
Elite Member
Joined : May 2003
Posts : 33494
Posted 11/17/2018 8:19 AM (GMT -8)
Usually the docs put patients on a PPI with pred....omeprazole seems to be the one.
Please mention the heartburn since Pred will acidify the stomach and possibly cause ulcers in there and duodenum.

Hope it kicks in soon.....are you still on other meds including rectal?

q
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Celeriac
Regular Member
Joined : May 2017
Posts : 197
Posted 11/17/2018 8:54 AM (GMT -8)
In a weird way, dealing with the whole, “I am pooping blood and that is seriously fecking abnormal!” thing becomes ...not really easier, but less alarming. The blood is typically caused by friability of the lining of the colon. It’s fragile and it bleeds as pooping and straining happen. So (usually) it’s not just perpetually bleeding open wounds, even tho it seems like a lot of blood. And it’s usually mixed with thin mucous, which also makes it seem like more than it is.

I say this as a person who’s been pooping blood for 8 months, and had 3 iron infusions to deal with the resulting anemia, none of which was particularly alarming to my doctors, given my active flair.

Obviously our goal is to stop pooping blood as quickly as possible, but it’s just a reality until you can get your flare resolved. Overall, I think 90% of making peace with an IBD diagnosis is just the slow acceptance of things that seriously freaked you out while you were a “healthy” person. It can be traumatic to varying degrees, and it definitely just takes time to adapt to flare-normal, even as you and your doctors work to limit the amount of time you have to spend there.
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simon71
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Joined : Feb 2018
Posts : 88
Posted 11/20/2018 4:15 PM (GMT -8)
the fatigue is starting up in the afternoons again. Today i had to leave work early in the afternoon because my brain was just done. Headache, fatigue....this is horrible.

THey started me tapering off the pred yesterday so maybe that is it or maybe i am getting sick from somthing else having had my immune system weakened by the pred. Who knows. I go in tomorrow for my first blood draw since on 6ap. Hopefully that turns out ok.
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simon71
Regular Member
Joined : Feb 2018
Posts : 88
Posted 11/26/2018 5:30 AM (GMT -8)
Things are getting a bit better. I have been on the prednisone taper for 7 days now and for the last 3 days things have been "normal" as far as bathroom visits go. I can feel a bit of discomfort on my left side and some gurgling from that area as well. I need to get the clinic to get me more pills though. I am out and i am right in the middle of the taper. I am supposed to be down to my first day of 20mg for the next 7 days.....and then 10x7 after that. Lets hope they will perscribe the remainder.
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