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Ulcerative Colitis
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Posted 4/24/2016 7:42 PM (GMT 0)
Okay, I've been doing pretty well the last few years doing my own thing. I'm on no meds as I ran the gamut and nothing worked for me. 4 or 5 years ago it looked like surgery was inevitable but I was able to get better with some holistic options. Finally off of extended runs of prednisone, I swore I would never take it again.

I start a new job tomorrow after leaving my previous job of 17 years. Last week was very stressful even though the new gig is better by all measures. That said, I start on Monday and my gut is a wreck. I'm up to 8-10 bathroom visits a day. No blood but I'm losing weight and I feel terrible.

I squeezed an appointment in NEXT Monday but I am afraid that will be too late. I have some prednisone here. I'm not sure it's enough to get me through til Monday as really don't know how much would be an effective dose at this point or how long to take it (I am aware that anything longer than a week or higher doses requires a taper). What would you do? I don't want to go to the ER to pay $3000 for nothing and risk getting held up overnight. Thoughts?

Post Edited (intofx) : 4/24/2016 6:40:31 PM (GMT-6)

Posted 4/24/2016 7:52 PM (GMT 0)
That's a very difficult situation to be in. If you've been doing well without meds for such a long time and you've been maintaining with holistic approaches, what do you think changed that is causing you to have these symptoms?

For me, blood was always one of the first symptoms that came along when I wasflaring. I wonder if you ate something... How long has the frequency been increased? Other symptoms? I always had really difficult to manage UC, so I can see how it's possible to be in a medication free remission, it may have been due to the other stuff you were doing, but it may have been spontaneous, who knows... I have the situation where each flare up was harder to get under control (less medical options and more resistance to the available meds, especially the ones I tried). It may have been the case that if I waited things would have improved eventually, they always had in the past, but my last flare up would not subside. 18 months of ups and downs drove me to surgery.

I think the most important thing, is to remember, if you decide to take the prednisone, you will still need to figure out what to take when you stop it to keep the remission. Maybe the holistic stuff you did the past will work, but maybe not.

How about uceris instead of predninsone? Maybe your GI would be willing to give you a script for that so you don't have to deal with the awful side effects from pred. Over a week for an appointment sure makes things difficult. It's not long, but it's long when you're under a lot of stress and worried things might get out of control. I don't know what to tell you. Maybe you feel okay about giving it another day or two to see if whatever if going on stabilizes? Otherwise, it may be the only hope to take the steroids and try to get things at least bearable for your first day. Not an easy decision. I am sorry.
Posted 4/24/2016 8:24 PM (GMT 0)
Do you have a walk-in clinic available? Explain you need to get through the week until your GI appointment.
Tell them you want to take the prednisone you have and maybe they can come up with a better short term idea. Get tested for bugs like C. dificile.

I would opt for Immodium over prednisone. Do you have any anti-anxiety pills that would calm your gut?
Perhaps it's IBS rather than UC causing your problems.

I think you are right to question the effectiveness of ER visit because docs do not want to treat something they don't have evidence of (they don't go by how many BM's you say, they need proof: blood tests, scopes, etc). I just had a great ER visit for a skin infection that blew up fast but they could see it and took blood and culture while giving me IV anti-b's.

Hope you can get through the week safely.
Posted 4/24/2016 11:39 PM (GMT 0)
I'd recommend calling your gastroenterologist office tomorrow (Mon) morning and asking about the prednisone. We're not doctors and therefore cannot advise you on whether or not to self medicate yourself with a prescription drug, doses to take, etc.
Posted 4/25/2016 12:48 AM (GMT 0)

notsosicklygirl said...
That's a very difficult situation to be in. If you've been doing well without meds for such a long time and you've been maintaining with holistic approaches, what do you think changed that is causing you to have these symptoms?

For me, blood was always one of the first symptoms that came along when I wasflaring. I wonder if you ate something... How long has the frequency been increased? Other symptoms? I always had really difficult to manage UC, so I can see how it's possible to be in a medication free remission, it may have been due to the other stuff you were doing, but it may have been spontaneous, who knows... I have the situation where each flare up was harder to get under control (less medical options and more resistance to the available meds, especially the ones I tried). It may have been the case that if I waited things would have improved eventually, they always had in the past, but my last flare up would not subside. 18 months of ups and downs drove me to surgery.

I think the most important thing, is to remember, if you decide to take the prednisone, you will still need to figure out what to take when you stop it to keep the remission. Maybe the holistic stuff you did the past will work, but maybe not.

How about uceris instead of predninsone? Maybe your GI would be willing to give you a script for that so you don't have to deal with the awful side effects from pred. Over a week for an appointment sure makes things difficult. It's not long, but it's long when you're under a lot of stress and worried things might get out of control. I don't know what to tell you. Maybe you feel okay about giving it another day or two to see if whatever if going on stabilizes? Otherwise, it may be the only hope to take the steroids and try to get things at least bearable for your first day. Not an easy decision. I am sorry.

It's the stress for sure. It's been coming on since I made the decision to switch jobs.

I'll look into the uceris. I'm really trying to hold out for this upcoming trial that begins in a few weeks and I need to know what drugs would prevent that.

A week is a LONG time - especially when you made the appointment at the beginning of LAST week. I was lucky to catch a cancellation. My doc is booked thru August!

Thanks for the thoughts!
Posted 4/25/2016 1:13 AM (GMT 0)
Consider going on the "Intro diet" for SCD. A few days ago I was feeling terrible but doing this (and drinking plenty of homemade broth) totally reset my system.

Also, try cort enemas just to get you through for now
Posted 4/25/2016 4:44 AM (GMT 0)

Martinco said...
Consider going on the "Intro diet" for SCD. A few days ago I was feeling terrible but doing this (and drinking plenty of homemade broth) totally reset my system.

Also, try cort enemas just to get you through for now

I tried the SCD years ago and it put me in the hospital. Different strokes... Glad to hear it's working for you, though!

the only thing that worked for me in the spinach and sunflower seed butter thing. Sounds crazy but it's kept me above water for years. This job thing is the only reason I'm floundering.

Enemas work only on the left side. I have right side issues as well. :(

Matt
Posted 4/25/2016 5:29 AM (GMT 0)

imagardener2 said...
Do you have a walk-in clinic available? Explain you need to get through the week until your GI appointment.
Tell them you want to take the prednisone you have and maybe they can come up with a better short term idea. Get tested for bugs like C. dificile.

I would opt for Immodium over prednisone. Do you have any anti-anxiety pills that would calm your gut?
Perhaps it's IBS rather than UC causing your problems.

I think you are right to question the effectiveness of ER visit because docs do not want to treat something they don't have evidence of (they don't go by how many BM's you say, they need proof: blood tests, scopes, etc). I just had a great ER visit for a skin infection that blew up fast but they could see it and took blood and culture while giving me IV anti-b's.

Hope you can get through the week safely.

Curious, do you take the immodium per the instructions on the box? I've always heard that immodium could be questionable for us... no?

Thanks,
Matt
Posted 4/25/2016 1:03 PM (GMT 0)
Matt said: do you take the immodium per the instructions on the box? I've always heard that immodium could be questionable for us... no?


I use generic Immodium conservatively (as anyone with UC should). That means half a pill or a whole pill on a day I need no runs to the toilet. Not several days in a row and very rarely 2 pills in one day (separately not together). Immodium wears off overnight for me and does not change my bowel habits.
Your gut may react differently. I also use the pink generic pill Bi****h Subsalicylate with it because it seems calming. And if my gut is cramping badly add 10-20 mg cap of generic Bentyl. These are my rescue pack and am sure part of it is mental calming because they are not all that powerful.

Every GI I've had said to use Immodium as needed but not every day. If you abuse it you're changing your gut motility and may end up severely constipated (megacolon). That is no fun and my gut can get C all on it's own, no Immodium needed.

72 generic Immodium caplets last me over a year.
Note: I recently bought the generic liquid Immodium to travel with because I thought it might be a faster fix but after tasting it realized it has artificial sweeteners in it which my gut hates. :-(
Posted 4/25/2016 5:55 PM (GMT 0)
I think you need to see GI asap
Hold off on pred for now. They do have some steroids that are less systemic either ones taken orally but not released until the colon (uceris)
Or rectal steroids.

The hardcore systemic ones are often more effective however they are a terror as you know.

You need to get checked for pathogens like C. Diff, cmv, ova and parasites, salmonella, etc...

Because you have not yet tried mesalamines you can try those to see if they are enough. If not you may need to jump to biological and immuno modulator meds
Posted 4/26/2016 4:06 AM (GMT 0)
Thanks, All...

Doc called in Uceris. I'll start taking in the am as I took one Pred this afternoon as I saw some blood in the toilet. Of course, 5 minutes later I get an email saying he had called in the prescription. Wish me luck I have to get this flare calmed down ASAP!!!

Thanks,
Matt
Posted 4/29/2016 4:23 AM (GMT 0)
How long did it take for Uceris to really kick in for you? I'm on day 3 and still struggling. (I don't expect miracles but if things don't start to settle by Monday afternoon, I'm screwed.) I'm going to be traveling on a tour bus with a celebrity for two nights starting Monday night. FML.
Posted 4/29/2016 12:19 PM (GMT 0)
i would take the pred - but i would not go any more that 20-30 mg/day with the uceris - if anything weird started showing up, i would stop -
Posted 4/30/2016 11:35 PM (GMT 0)
Doctor is switching me back to pred. 40 mgs. This is a nightmare.

Matt
Posted 5/1/2016 12:04 AM (GMT 0)
I'm sorry to hear about your recent difficulties with this disease. Prednisone definitely comes with some gnarly side effects. If you were taking a more holistic approach to your disease, have you ever thought about meditation? If stress is a leading factor in your flare up, maybe a little bit of deep breathing and relaxing remedies will help ease a tense mind and body?
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