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Trying to decide on the next step for this flare

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Posted 6/9/2010 6:01 PM (GMT 0)
without getting a cscope i dont think we can figure out exactly where my flare is affecting right now..the doc did a rigid scope and had a look see to find a normal rectum thats as far as he looked though.

I am still having bloody stools that are very loose..cant say they are water but they are not formed at all..

would this type of stool be the result of inflammation in the sigmoid? or higher? i thought higher was more watery D?

 

Posted 6/9/2010 6:25 PM (GMT 0)
I am sorry to hear you're doing poorly. It must be coming from higher up if the rectum looked ok. Did they take biopsies? my doctor said my last scope didn't look that bad but my symptoms were pretty severe and the biopsies showed mild/moderate inflammation. I guess it doesn't have to look bad to be substantial. Have you tried cort-enemas? I have but they don't seem to help me too much.
Posted 6/9/2010 6:36 PM (GMT 0)
I am trying to decide whether to try the cort enemas OR the oral steroids. i dont know what to do ..I need some advice badly.
Posted 6/9/2010 9:59 PM (GMT 0)

anyone?

I just called my doc after going 6 times today with blood today..I feel tired and weak and Im only around 105 pounds so I cant afford to lose any more weight..

he rx prednisone 30 mg for two weeks and then start 20ng..I thought this was odd..shouldnt I taper at 5mg a week?

I dont know if I should pick up the rx :( :(

So confused..should I wait? should I try the cortenema first? wait to see if the up in Pentasa will have any affect?

Please help. I am tired, frustrated and getting very worried which may be making this worse..


Posted 6/10/2010 12:34 AM (GMT 0)
PLeae please can someone help me
Posted 6/10/2010 12:49 AM (GMT 0)
I was prescribed Prednisone taper for my flare. I did 7 days of 30 mg, 7 days of 25 mg, etc. I'm currently on 20 mg (day 3) and am going once in the morning with only minimal streaks of blood. I'm taking generic Colazal 3x3 daily and generic Rowasa enemas at night. My gastroenterologist recommends continuing the Rowasa nightly through the Prednisone course, then after about a month or so starting a very slow taper to every other night on the enemas . . . he recommended a maintenance treatment of the Rowasa no lesser than once every 3 nights. I'm going to stick with every other night when I get to that point as long as I can stand it - the very minor discomfort of the enemas is a small price to pay for normal BMs during the day.

If you're flaring to the point you are, I would go ahead with starting the prednisone. It's not fun but it will knock out your flare within a couple weeks, I bet. Good luck!
Posted 6/10/2010 1:16 AM (GMT 0)
I don't think any of us can really tell you the best thing for you. I know when I was in your boat, a few months ago, I had no choice but to pick up the steroids. I was very sick and in a lot of pain, couldn't eat at all during the day and was runnning to the toilet constantly. It was no way to live. Although i haven't successfully ben able to taper to 0mg, I have gotten down to 1mg and 2mg on 2 different occasions and I can't say that I regret going this route, I don't think there was much else I could have done.

Honestly, the rectal foam enemas are helpful to some but it doesn't help if the inflammation is too far past the rectum which I believe is the case for me because I haven't seen significant improvement from them. I have been putting off starting 6mp until a week ago because I wanted to try all the 5ASA options and nothing has really helped. I had to bump my prednisone dose because I was falling back into a terrible flare, probably as bad as you are or worse... I had to go back up to 40mg, I don't even like to think about it or admit to it. I don't think 30 is high, nor is a 10mg drop a lot for you if this is your first time on prednisone. Seems pretty normal. Originally, I started at 40 for a week, then 30, then 20, then 10 for a week, then 5, then 2.5, then FLARE.

You may just be prolonging your symptoms but if you think you can get it under control wihtout oral steroids, I completely understand wanting and trying that route. Sometimes waiting just makes it harder to get things under control, I believe this has probably contributed to my current flare getting harder to manage. I probably should have started 6mp when my doctor suggested it a month ago but it's pointless to think about that now, all I can do is look forward and hope for the best. I hope you get some relief quickly.
Posted 6/10/2010 2:38 PM (GMT 0)
Thanks for your responses. I Am still pondering..
Yesterday and the day before had 6bms and most had dark red blood mix in. I wanted to know if inflammation in the sigmoid or decending colon causes diareah? I always thought it had to be much higher up to causes D ...I dont have full out D its just very very loose with blood..thats why I am debating on whether to go ahead with the steroids orally or pick up the cortenemas tonight...

I wish I could just have a proper scope right now. I dont think he thinks I am bad enough to fit me into his very busy list of cscopes so by the time I get one it will probably be a few months away..
Posted 6/10/2010 2:56 PM (GMT 0)
I would go with the prednisone. I wouldn't mess with the cortenemas if this is severe for you.

For me, 6BM a day is a decent day, but everyone is different.

What does your doctor recommend for this flare?
Posted 6/10/2010 4:03 PM (GMT 0)
This is not severe for me. It seems mild compared to where I was a couple years ago. I was going up to 50 times a day and had SEVERE pain and ulcerations in the rectum and bad inflammation in the sigmoid. The rest was mild inflammation throughout.
The thing this time is that I have the bottom covered with enemas and suppositories that I have been using for 3 motnhs. I think the flare has skipped that area and moved up where the enemas cant reach.
Doc thinnks I need either oral steroids and tihnk about Imuran. I dont really want either but yesterdasy was such a bad day and I felt awful..but I wouldnt say Severe.
Today is better..have gone twice so far only where as yesterdasy I tihnk I went four times by this time already. I did some some bleeding this morning but only at the very tail end of the bm.
Posted 6/10/2010 7:44 PM (GMT 0)
Only you and your doc can say when to go back on steroids. We were told that inflammation anywhere can cause diarrhea. The fact that your rectum looks good is probably due to the salofalk enemas and suppositories. If the inflammation is not too much higher up you might be helped by cort enemas before you to the pred route. The docs can usually tell how much inflammation there is by your blood tests and level of anemia. If the inflammation markers are not too high and you are not too anemic I think I would be trying the cort enemas first.

My son was going through the same symptoms but he became very anemic and had very high inflammation markers. Pred was our only option at that time.
Posted 6/10/2010 7:49 PM (GMT 0)
I would wait Krissy....what about some fibre supplements to help bulk up the stool?

Maybe cut back on the VSL...or change the probiotics?

You're panicking about something that's not actually getting worse.....

You've been through major emotional trauma....and I think again, your desperation about a deadline about wanting to get pregnant is playing a role.

Maybe if you say....OK, next year this time we can reconsider...no preggo this year?

You've been at the severe end in the past....and truly, with alll that's happened to you recently, you need to wait.

If you get worse....REALLY worse...that's different. If yo're maintaining the status quo and start emotionally healing from this, you should see improvement.

My take, been there.....and yes, I even asked my doc about pred. He looked at me and said....NO, no where near needing them. That in itself eased my desparation.

quincy
Posted 6/10/2010 8:03 PM (GMT 0)
Quincy!! Where have you been all my life!!

I keep thinking fibre is gonna make me go more..I think I may need this explain again.
It has gotten a bit worse..going more times a day and its getting looser and looser..also there is blood.

There is nooo desperation in trying to get preggo..it can wait no problem..I surely do not want to get pregnant in this state..we are not even talking about that at all..It was a thought earlier on in the year but I think gears have shifted a bit to me getting better and STAYING BETTER...that is the main thing right now ..babies can wait

So I guess you dont think im bad enough..? Im going 4-6 times a day right now..loose and with some pain and blood
Posted 6/10/2010 8:05 PM (GMT 0)
Quncy's right; your symptoms don't warrant prednisone.

Sue
Posted 6/10/2010 8:35 PM (GMT 0)
Krissy....I KNOW my experience and yours are different....but for you being on the rectal meds has obviously helped.

Whatever is going on above obviously needs to settle down, and I believe you need another c-scope maybe in the fall. I also believe that the pseudopolyps need to be biopsied or at the very least to make sure nothing is going on with them. The other option is to maybe go through the indignity of a barium enema...it's not intrusive as is a c-scope. Don't know if it'll give any answers, but at least that's one test that can be crossed off the list.

I'm relieved to hear about the baby issue...

Hang tough....you could "maybe" add entocort oral to the mix...maybe that will be enough to help rather than systemic pred.

The fibre, even just one capsule might help....or benefibre? I've never tried it, however.


What other probiotics have you tried?

q
Posted 6/10/2010 9:38 PM (GMT 0)
hi krissy,

i'm just on here after a 9 day trip away and i'm sorry to see you're not doing any better.

Like I said to you on the  past, I really do think you rneed another c scope to figure it all out. I had my first one in 7 yrs last month and had my follow up appt today with my GI. I'll post about that in another thread.

Anyways, from what my GI said, you dont warrent pred. yet. Try the cort enemas and see how it goes. Trust me, I understand how frustrating this can be. To think that you are sick and people are telling you you are not sick enough for the next med. etc.

Please try to relax, I know its way easier said than done- I'm always worried about my UC, but I know relaxing does calm my symptoms.

Good luck, :)

Posted 6/11/2010 12:55 AM (GMT 0)
Q-
My doc figures that what is going on above is just me flaring..he thinks since I have been doing the enemas and supps that everything is ok down there and that I am not medicated enough up top..I called the doc that found the polyps back and once again he confirmed they are nothing to be worried about and they do not remove them..
What is entocort..I have never been introduced to that before.
I have not tried any other probiotics at the moment except VSL and I have cut back to one packet again since I cant afford to do two.
Today I had a better day..went four times with minimal blood and they were not as loose today either.
Posted 6/11/2010 3:31 AM (GMT 0)
Entocort is a steroid that is formulated to stay in the digestive tract rather than entering the bloodstream. It usually hits the ascending colon/terminal ileum which is why it's often used in Crohn's patients. You don't get the side effects, however it did nothing for me.

30 mg really isn't a lot of pred. Also, my doc sometimes does 10 mg jumps in his tapers at the higher dosages. A quick, low-dose taper might be just what you need to kick yourself into remission, even though you don't really want to take it.
Posted 6/11/2010 7:09 AM (GMT 0)
Good you had a better day Krissy.

q
Posted 6/11/2010 11:56 AM (GMT 0)
For whatever reason, Entocort really helped me, and my inflammation, though severe, only goes up 25cm. Reading comments like Malkavians made me wonder if I had inflammation in my ileum, since it was only visibly good, no biopsies done. But, I've been off Entocort since Dec. 10th and still doing fine. So, maybe it helps some and not others with UC type inflammation.




Also, when I tapered to two Entocort from three, I got worse about 10 days later (almost complete regression). That's when I got Rowasa. It had me back where I was before tapering Entocort in just a few days. So, that makes it seem Entocort was healing all the way to at least the descending colon and more. Might be worth a shot for you before resorting to the prednisone.
Posted 6/11/2010 2:22 PM (GMT 0)
I wonder why my doc has not recommended Entocort for me. Espcially since I have pancolitis.
Does it only work on the right side if I am understanding correctly?
On my last scope when I had a severe flare I did have mild inflammation up to the cecum and the ileum itself was normal.
Posted 6/11/2010 2:28 PM (GMT 0)
He might not think your symptoms warrant a steroid? I think your symptoms are indicative of a mild-moderate flare which can be controlled with lesser evil drugs. Entecort is a steroid and although not as bad as prednisone it's still not the best choice for a mild to moderate flare. You have to understand, flares don't necessarily get under control immediately. They can take days, weeks, or months to respond to treatment.

Sue
Posted 6/11/2010 2:52 PM (GMT 0)
Well, Entocort is supposed to treat higher up, even in the ileum I believe. But in my case, I believe it helped me on the left side, all the way in the sigmoid and possibly furthur, based on what I described above. So, if it helped me all the way down there maybe it could be beneficial for you even higher up since your rectum/sigmoid seems to be OK.
Posted 6/11/2010 3:29 PM (GMT 0)

I was in a similar situation, about to go back on pred to get rid of a stubborn 1 1/2 year flare.

if it was me, first I would try the cort ememas and keep a food and symptom diary before going to prednisone. If it were me, i would give that a couple of weeks , as long as i was about the level you mentioned bm's 4-5.  if i became drastically worse i would call gi of course

I went on pred one time, felt better while on it but flared again within 2 weeks, so that is why i am not very excited about pred. 

what helped the most was figuring out some of my food triggers and eliminating them

luckily, some of the things that i did helped me and I did not have to go on pred again

Posted 6/11/2010 3:42 PM (GMT 0)
Krissy,

Having read through much of the history in this forum, I can see that there are members here (many of whom have replied to this thread) that have extensive knowledge of UC and its treatments. I certainly don't want to belittle any advice given, especially seeing that everyone cares and truly wants to help.

That being said, no one's advice, here or elsewhere, should trump the recommendations of your GI doc (unless you have good reason not to trust him). As he's examined you and spent time working directly with you, I think you should follow his direction.

Pick up your Prednisone and take it as prescribed. Or, get a second opinion from another doctor who can review your medical records and give you another examination. I'd go with the former.
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