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Tell me again why no oral steroid?

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Posted 8/31/2012 10:45 AM (GMT 0)
I figured out why this fare is bothering me more than the last one...

2 years ago, with my ad flare, I took prednisone for I beleive 10 or 14 days.
Granted, that flare was " severe" proctitis. Scope showed severe inflammation, and the symptoms were way worse.

This time, it's mild to moderate...symptoms are not as bad..

However...I still have brigt red bleeding in the morning...it's usually the second or third time that I go. The first one is usually just rowasa liquid. The second one is formed- ish with maroon stain on toilet paper...

But the third one...bright red blood when I wipe. Just one time...and the stool is formed.

It's usually all within 15-20 minutes...but...why again shouldn't I go back on a week or so of oral steroids?
Won't that stop the bleeding, and start the healing?

I just dont understand?

Its seems to be a quick fix, but it must be something else because neither my GI or my rectal surgeon seems to want to even discuss it...and they both know I can write my own prescriptions...and both of them said absolutely not to..

I just don't get it?

Why wouldn't I want to stop the bleeding, continue with the rowasa for months, add some oral meds and hopefully stay in remission?

Can someone explain this? It seems like I'm missing some piece of the puzzle?

I realize it's only been about 3 weeks, but when I was using the cortenema the bleeding stopped...why not restart that, or an oral med?
What are they waiting for? Won't this just keep getting worse and worse?

J
Posted 8/31/2012 11:23 AM (GMT 0)
You're not even on an oral medicine for your condition.  Thats unbelievable.  I was diagnosed a year ago with moderate ulcerative proctitis and was put on asacol 400 mg. 2 pills 3 x a day and cortifoam for 21 days and it cleared me up in 10 days until this year when I started seeing a little blood and mucus and the doc put me on cortifoam again, even though he wanted to give me the cortienema to take at night, but I told him I don't think I could stand to hold an enema in (don't know just guessing) and since the corifoam worked last time and there was absolutely no side effects I asked for that again and within 5 days I am clear and still have to take it for another 16 days.

I think your doctors are wrong to not do anything for you.

Posted 8/31/2012 12:06 PM (GMT 0)
I think you should be on an oral med, but a 5-ASA, not prednisone. IMO, pred is reserved for bad flares, when it's clear the baseline drugs aren't really doing anything. You ARE improving. Yes, it's slow, but it's improvement. I was diagnosed at the end of January in 2009 and was in a really severe pancolitis flare -- we're talking 15-20+ episodes of extremely urgent diarrhea plus a lot of weight loss. I gave both the oral and rectal mesalamine drugs a LONG time to work and they got me really close to remission. It wasn't until mid-March, after a tummy bug stirred things up again and I had an interview coming up, that I finally broke down and took pred. Remember that even short-term pred use can have serious side effects.
Posted 8/31/2012 12:46 PM (GMT 0)
There are no guarantees with this, one way or another. Normally I'm against taking pred because most are on it for a long time but in your case apparently you took it for a short time and it worked so I really don't understand why the doctors wouldn't take the same course that worked before. I firmly believe that patients have to be their own advocates and stand up for what you want and what you don't want. Taking pred for a short time really can't hurt so if that is what you want to do (and you have sound reasoning) then you should just demand it or get a new doctor that will listen to you.
Posted 8/31/2012 12:53 PM (GMT 0)
Thanks for your replies...

I agree, I should be on an oral med...not steroid...

When I asked both my GI and primary doctors they just said that because I have very few flare, they didn't think it was necessary.

The first time I was diagnosed was 2006, took canasa for about 9 months, VSL, and flax. Didn't have an issue until 2010 training for marathon...that's when I had a huge fare. Took steroids, canasa and rowasa, for about2 months, continued with canasa for about another 5 months.

Again, nothing until a stomach bug in July...started this whole flare.

I know I'm improving, and I almost hate to complain because I know I have nothing to complain about...it can be so much worse...

But I just have this feeling in my gut that tells me I should be taking something else...have had that feeling since first being diagnosed.

I have an appt in oct with some GI at an IBD center in NYC. But I just don't want to risk not starting anything until I see him?

If I did start an oral med, what would you suggest?

Asacol? Or Lialda?

Just wondering


J
Posted 8/31/2012 2:25 PM (GMT 0)
OK... update

Rectal surgeon said to stop canasa and rowasa and start Cortenema for 3 weeks.

If no response, then an oral med.

so frustrating.

Posted 8/31/2012 2:29 PM (GMT 0)
If you can write your own prescriptions, you obviously have medical qualifications. This question should be put to your PI and GI. They can explain technical details to you they might not be able to get into with many patients. You should also be able to consult texts on the medical management of UC and make good decisions. After hearing their arguments, think about it and either write yourself the prescription or not.

Why are you asking people who only have an outline of your case history, and none of you lab/diagnostic results, about prescribing advice? You end up with recommendations from people based on their experiences, which may or may not be a good match for your case. Getting this kine of "noisy" advice for a decision you are more qualified than some to make on you own just seems potentially more confusing than illuminating.
Posted 8/31/2012 2:50 PM (GMT 0)
Why am asking is because I have been here before, with some of these members and have gotten sound advice.

The people on here have experience and knowledge, which to me, in addition to the suggestions of my GI and PCP, have in the past been what has kept me free from flares.

I am able to consult texts and websites as anyone else, however, again, the medical texts, can only offer suggestions and treatments, and , i have found this site to offer experience as well, something I am unable to find with my GI or any of the texts that I  or anyone else can read.

As far as my lab results/ diagnostics, I did report the results of last colonoscopy and am waiting for results of a blood test.

I recieved excellent advice on the number of biopsies, the results of where the ulcers were, as well as the thoughts from past experiences  regarding the blood test to distinguish Chrons vs colitis.

I actually love coming here to read what people suggest. I find it comforting and supportive.  I feel that a great balance is what i read from the people here, plus what my GI suggests, as well as what I read.

 

Posted 8/31/2012 3:51 PM (GMT 0)
I think I'd just switch the Canasa (you use that in the morning, right?) out for a steroid enema or foam suppository AND add an oral 5-ASA med. There's no reason to stop the rowasa enemas. As for which oral 5-ASA, I honestly don't think it matters too terribly much. I mean, they all basically do the same thing. I know a lot of people with limited UC use Colazal. I think I'd just figure out which is cheapest with your insurance and go that route.

Honestly, I really wouldn't listen too terribly much to a colorectal surgeon for an issue that really isn't in his area of expertise. Of course, one could argue that you shouldn't listn to me as I'm not an MD.
Posted 8/31/2012 4:02 PM (GMT 0)
Fruitgirl,

Thanks for your advice...

The reason I saw the colorectal surgeon was because my GI was out for a month ( his wife had a child)

The CR surgeon was the one who saw the proctitis when I had the symptoms, and again after 2 weeks for follow up and saw improvement.

I did call my GI as well, as I agree, he is the one who treats me and has been for 6 years.

He knows the CR surgeon, and was happy there was some improvement, however, he did say if the bleeding continued to call him.

I assume he will put me on some sort of oral medication at this point, but in the meantime, I was thinking the same thing...

swtiching the Canasa for the cortenema, and continue with Rowasa.

I know I will see results with the cortenema, as I took it for only 10 days and day one the bleeding stopped.

It really is trial and error with this.

I'll see what medication he suggests.

Posted 8/31/2012 8:37 PM (GMT 0)
You have to make a signature and inform the others that you have an area of inflammation with deeper ulceration in the terminal ileum.
That's my push for an oral 5ASA that dissolves at the start of the ileum. Only one...Pentasa.
That will also help deal with the rest of the colon and part of the sigmoid.

The rectal meds will help.

If you're in extreme training for marathon, that in itself can hinder your healing.

Why not steroids. Well, as gary stated, there are no guarantees. I've seem a LOT of failure lead by steroids...so if it works this time, what about the next, and the next, and the next, and the next, and the next,,,this post will be full of nexts.

The process your doc is setting you up is for future success..not failure. Your butt will hopefully heal and since you have bleeding on the third bm, as stated by the latest examination, less friability. That all means healing.

You can try the steroid enema only and drop the others, but add them back in when you're tapering the steroid enema.

Again, the goal is to get you on them for continued treatment and maintenance.

The oral 5ASA med is a must....I cannot see the doc leaving that out and forever pissing around with the rectals. I, for one, believe that there is a somewhat communication within the inflamed areas.....
Kind of like the Borg..."resistance is futile".

q
Posted 8/31/2012 8:49 PM (GMT 0)
If you can write your own prescriptions, you should be well aware of why no oral steroids:

electrolyte imbalances
cerebral edema with mood and behavior changes
weight gain
muscle cramps
hyperglycemia

And longer term:

glaucoma
diabetes
muscle wasting
osteoporosis
osteonecrosis

And that's just the first few that come to mind. Quincy is right, with inflammation in the rectum and terminal ileum you need to be on oral medication, but not Prednisone.
Posted 8/31/2012 9:09 PM (GMT 0)
Hi jfem4,
Yeah, what the other said above. Try to save pred for desperate situations...seems to lose it's effectiveness and cause harm if used long term. Also agree w/ adding an oral asa (but you know that already!) I like Lialda b/c I can take it in the morning and forget about it, where alot of others, you take it 3X/day. I think too you can do Cortenenema at night (drop Rowasa for now) maybe Canasa in the am. Eventually when you taper, start on Rowasa and use for maintenance. Cortenema and Rowasa at the same time..well...that's alof of liquid for your colon to hold in!

Anyway, you may have to play around w/ diff. rectal med combos. Again, I sort of like the cortifoam so far--easy to retain..doesn't leak and can do Rowasa at night. So that is my 2cents. Pls continue to update.
B
Posted 8/31/2012 9:19 PM (GMT 0)
I would recommend against prednisone 99.9% of the time but, I must admit, if she only took it for two weeks before and it worked, why not try taking it again for two weeks? The side effects from prednisone are close to minimal if you are only on it for two weeks. I'm still shaking my head on this one. This only shows how clueless doctors are when it comes to autoimmune diseases when a medical professional who can write their own prescriptions would rather have advice from us.
Posted 9/1/2012 1:44 AM (GMT 0)
I'm well aware of the side effects of prednisone, as I'm sure anyone who can use an Internet is as well.

However, as Gary said, the issue is that since I took it for 2 weeks 2 years ago and it seemed to help, why not do it agin this time...that s basically what I have been questioning since this flare started.,,thank you Gary .and yes, like I said before,since I am not an GI expert, nor an IBD specialist...I find that a good balance comes from what I read, what I hear from my GI doctor and what I gather from these very well informed people on this forum.

The side effects from the 10 mg that I took for 10 days 2 years Ago were almost non existent...again, why I asked if there would be such an issue from taking it again..

However, I have decided against it..


Hateuc...exactly what I'm doing,,,cortenema for 2 weeks with canasa in the am, the eventually rowasa and canasa...

I am following up with my GI in3 weeks and starting an oral med at that time...

Thank you,, I will keep you updated ! Thanks for your concern and most of all your support!

:)

j
Posted 9/1/2012 1:49 AM (GMT 0)
No problem jfem4. We are all here for support and whatever help you need. Sometimes you just need to consult w/ some other IBD peeps. :)
B
Posted 9/1/2012 1:49 AM (GMT 0)
Quincy,

Not training for the marathon this year...did it to raise money for a dear friend who died of brain cancer 2 years ago...however, it was too much on my body and the flare...switched to an easier triathalon this year..easier on the body but thankfully still raising money to help out brain cancer research...

Already suggested PEntasa to the GI...will discuss and start in 2 weeks at my follow up...thank you...

And yes...feel good that I am improving...all good!


Thank you again for your continued support! It has been invaluable!


J
Posted 9/1/2012 1:55 AM (GMT 0)
Hateuc,

Totally!

You have no idea how informative some of the people are on this forum!

The support is amazing..what a great place to throw out ideas!

Thanks again for your continued support...I really do appreciate it:)

J
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