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SqueakyandLiza
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November 3, 2019 9:50 pm  

Hi guys, 

When I was in the Emergency Room last night, the doctor gave me three prescriptions I have never used, and thought I would see if any of you have experience with these drugs??

1. Methylprednisolone (prednisone) This is a steroid

2. Dicyclomine: The doctor described this as like a muscle relaxant specifically for the bowels and said it will help with the pain

3. Ondansetron: This is an anti-nausea drug

Thanks in advance for any experiences you can share with me about these drugs.

 

-Liza
“May your day be bright and your bag be light.”


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IleosTony
(@ileostony)
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November 4, 2019 6:20 am  

Hi Liza,

 

I've taken all 3. The most prominent side effects of methylprednisolone are increased appetite and trouble sleeping, at least in my experience. The most important thing about this medication is that it has to be tapered off when taken in intermediate to high dosages. The prescription probably contains enough tablets for you to be able to do that and should have accompanying directions. Don't deviate from them unless your doctor tells you to. This is a synthetic version of cortisol, which the human body makes in small amounts every day on its own, which it stops making if you're on prednisone for a bit, which is why it needs to be tapered down rather than stopped suddenly. Doctors are generally reluctant to prescribe this chronically, so you likely won't be allowed to stay on this long-term, and if you are, it will most likely be in tiny doses of around 5 mg daily after a taper from whatever dosage your prescription specifies.

 

The dicyclomine is an anticholinergic. Some call it an antispasmotic and can work pretty well for belly pain that is muscular in origin. My experience with it is that it might lower blood pressure a little bit. I do feel more relaxed when I take it. If your Crohn's is only flared in the rectal stump, there is a chance that all you have in the rest of the digestive tract is some irritability that is spasmotic in nature, and this might go a good way toward calming things down and easing your pain. It can be a good nonopioid way to mitigate spasmotic belly pain.

 

Ondansetron is generic Zofran. I've experienced some sedation with this, but in my case that's gone away fairly quickly and has worked well for keeping nausea at bay.

 

I strongly encourage you to see a GI doc with this combination of medications, not your GP. GPs know plenty, but their experience and training in matters like this are relatively limited compared to a GI doctor, whose qualification to manage a regimen like this is part and parcel to his/her practice. I wouldn't trust a primary care provider to help me with this regimen as much as a gastroenterologist.

 

Disclaimer: One person's experience with any medication may not be the same as another's. Just because you could experience a certain side effect doesn't mean you will. Just because someone else might not experience a given side effect doesn't mean you won't. IleosTony is not a doctor and is only sharing the requested personal experience in laser-focused fashion. Even if IleosTony were a doctor, he isn't your doctor.  Thus, he would give you general information and tell you to trust your own doctor more because he/she knows your case better. Please don't sue Tony because he doesn't mean to hurt you. Please don't hate his guts if your guts hate you because of something you did based on Tony's anecdotal word vomit. Yes, puns intended. Let your doctor have the final say in all treatment related information/advice.

 

Hope this helps.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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john68
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November 4, 2019 6:29 am  

Liza, I really don’t think I could top what Tony has said 👍 😃 I agreed totally on seeing further medical options. I was taken off the steroids with out the dose being reduced and it hit me like a sledgehammer.

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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November 4, 2019 7:13 am  

@ileostony

Tony,

Thank you so much for the detailed information on these drugs. That is so incredibly helpful to me!!  And for you to take the time to type out all that info is so kind.

The steroid is a 6 day pack, which does include tapering off instructions. The first day is 4 pills, and they gave me 6 early Sunday morning in the hospital, with instructions to start the rx this morning. I’m not looking forward to increased difficulty sleeping. I already have that in spades, as evidenced by the fact that I’m awake at 4am on this site. 😂

Tony, I’m going to need your address to send you the subpoena, er, I mean Thank you note. 😂😂 I would never sue you or hate your guts!!  You actually made me laugh out loud with your disclaimer. 😂

-Liza
“May your day be bright and your bag be light.”


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IleosTony
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November 4, 2019 7:26 am  

Hi Liza,

 

There's a chance that the dicyclomine will help counteracgt some of the insomnia associated with the steroid. If you don't need to be at work, then I suggest not fighting the urge to sleep while taking this. Sleep is still one of medicine's greatest mysteries, especially with regard to its restorative properties.

 

Since you have already taken the first dose of steroid, keep going according to instructions. Do not stop for any reason unless your doctor tells you. If you're diabetic, keep a closer eye than usual on your blood sugar while taking the steroid.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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November 4, 2019 9:40 am  

Dr Tony, 

Thanks for the additional info. Since I have jury duty this week, I will probably have to fight the urge to sleep. 😀 Though if I nod off during jury selection, I might not get picked. 😂

You may not know the answer to this, but I have something weird. Last night about 7 or 8, my cheeks got red and really warm, like I am flushed for some reason. I would think it is a reaction to a drug, but I haven’t taken any of the new prescriptions yet. Even now, 10 hours later, I still look and feel flushed. In the hospital they gave me an anti-nausea and dilaudid for pain, and then the first dose of the prednisone right before I left at 4am. So if it is one of those, it seems like a very delayed reaction. Oh, also, they gave me a contrast in my IV when they did the CT Scan.  Any ideas??

-Liza
“May your day be bright and your bag be light.”


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IleosTony
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November 4, 2019 10:44 am  

Hi Liza,

 

Either the methylprednisolone or the CT scan dye can cause the flushing. My money would be on the steroid because of the delayed onset, but you should definitely report that to your doctor. It could be an allergy to iodinized CT scan dye. The doctor might ask if you have a shellfish allergy, but that's a different kind of iodine from the kind in i.v. contrast, so the question tends to lend credence to a myth. See this article for verification. You might still be allergic to CT scan dye, but that doesn't look too likely, though, again, a trained medical practitioner is better qualified to make that determination.

 

Basically this is probably just a side effect of the steroid and not a problem, but I would monitor and report it to the doctor at the first opportunity.

 

Just wear a shirt that says, "I hate lawyers." I bet they won't pick you then. :-P

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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VeganOstomy
(@veganostomy)
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November 4, 2019 11:59 am  

Of those meds, I've only ever been on prednisone and it was not a good experience for me - I had every and any side-effect possible. That one needs to be tapered off, so please make sure you are working with your GI. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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November 4, 2019 3:50 pm  

Ha ha Tony. I’m pretty sure I will be on the jury. They gave everyone a number from 1-78 and gave us a questionnaire to fill out. Based on how you answered, they have people coming in for individual questioning this afternoon. Then tomorrow morning, those who don’t get excused this afternoon based on the questioning have to show up and sit in order by your number and they do group questioning and use the pre-emptory strikes. I did not get asked in for individual questioning, so I’m free for the rest of the day. BUT, my number is 2, so if neither of the attorneys has a reason to dismiss me, I will by default, be on the jury. If my number was in the 20s, I would have a chance of not getting on. 😂😂

I have had contrast before with no problem, so you are probably right about it being the steroid. Is my face going to stay hot and red the whole week while I taper off?  😂😂

-Liza
“May your day be bright and your bag be light.”


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IleosTony
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November 4, 2019 3:58 pm  

Hi Liza,

 

I can't answer specifically in your case. Some side effects are initial and then go away after a bit. Others last the entirety of the course. Still others last until the dose goes low enough. Which side effects have which durations and thresholds can vary widely between patients. Your course sounds relatively short, so if it isn't too bothersome for you, perhaps it might be worth enduring it to get the anti-inflammatory benefit of the steroid. It's up to you and your doctor. Read up on which side effects are considered more serious and which you might be able to endure with relative safety, and talk to your doctor if you have any concerns at all.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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November 5, 2019 3:37 pm  

Hey guys,

I had my phone off all morning and was going to catch up with everyone on my lunch break, but no one has posted anything.  Lol.

So far I am only taking the prednisone and tolerating it pretty well.  My face is still flushed, and I am hungry, bordering on hangry, but since I am on jury duty, trying not to eat much to avoid bag issues.  Yesterday I felt great.  Today just before the lunch break started, I was having some pain, but now that I have eaten half a bagel, I am feeling better, so it may have been hunger pangs.  I've noticed I get those more since having the ileostomy than I did before.  

-Liza
“May your day be bright and your bag be light.”


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IleosTony
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November 5, 2019 7:26 pm  

Hi Liza,

 

I failed to mention that an increased appetite is another side effect of the steroid. Lovely, huh? You're also going to retain a little water. Don't be alarmed if your blood pressure is a little higher than usual. These side effects are not serious. Whenever I've been on methylprednisolone or other formulation of corticosteroid, I've been ready to eat my couch with a side of table leg and wash it down with a can of motor oil. 

 

Sorry you have to endure the flushing. Also, you might consider taking the steroid with food if you find you have abdominal discomfort with it.

 

Guess the "I Hate Lawyers" T-shirt didn't work? :oops: 

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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Posts: 275
November 5, 2019 8:05 pm  

Tony, that is funny that you mention blood pressure. When I was first out of surgery, for the first 4-5 months at least, my bp was averaging in the 90s over the 60s. Then gradually worked back to normal as I got healthier, which is usually in the 110s over 70s. When we went to the ER Saturday night, it was 213/88. The admitting guy commented that he knew by that how much pain I was in. As the night went on, the lower number went back to the 70s but the upper number was still in the 180s. But then again I was still in a lot of pain when I left. 

I think you are right about retaining some water too, and while I’m not ready to eat the couch, I had to have my husband take the extra Halloween candy to work. 😂

And, just when my trial was getting pretty interesting, some jerk witness made a smart-a$$ comment to the jury during a sidebar, and so each juror had to go in separately this afternoon to be questioned by the judge, after which a mistrial was declared. So it was a long day, going almost until 5, but now I am done for the week.  At least jury duty was keeping me from eating too much with this crazy appetite. 😂😂

-Liza
“May your day be bright and your bag be light.”


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SqueakyandLiza
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November 7, 2019 9:56 am  

I just realized I forgot to take my last scheduled prednisone last night. I just took it now, but am worried I have screwed up the tapering off. 😕 I should have taken 4 yesterday, 3 today, 2 tomorrow and 1 Saturday. But since I only took 3 yesterday, I don’t thing I should take 4 today to make up for the missed one. Ugh. 

I thought I was doing pretty well with them, but in hindsight, I feel like they are affecting my mood a bit. Ugh. 😢

-Liza
“May your day be bright and your bag be light.”


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IleosTony
(@ileostony)
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November 7, 2019 10:02 am  

Hi Liza,

 

Don't panic. Being off by one tablet isn't going to hurt you, though you're right that it won't do any good to make it up now. The mood changes with hydrocortisone are another yucky part of the territory. Taking a corticosteroid is like deliberately dosing yourself with a fight-or-flight potion. It's going to make things seem more stressful. This is normal.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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VeganOstomy
(@veganostomy)
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Posts: 2471
November 7, 2019 10:20 am  
Posted by: @squeakyandliza

I thought I was doing pretty well with them, but in hindsight, I feel like they are affecting my mood a bit.

I hope it's only just a bit before the end of this. Mood changes are common with prednisone, and it was a major side-effect for me. 

I honestly believe they coined the phrase "roid rage" specifically because of that drug! 😂

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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November 7, 2019 8:35 pm  

Eric,

I have no idea why, but I always assumed that roid rage had to do with hemmeroids, when I heard that term before.  LOL.  Now I know better!!  Though for me, it is just heightened emotions, not necessarily anger.  Though irritability is definitely in the mix there.  😀

-Liza
“May your day be bright and your bag be light.”


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