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I *THINK* I AM IN REMISSION OR VERY CLOSE :) YOUR THOUGHTS

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Ulcerative Colitis
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Posted 4/3/2010 1:52 PM (GMT 0)
I Really think I am there or getting very close :) I hope I am right..

After a looooooong time of flaring on and off (2 years) I think introducing the Salofalk Enemas might have done it for me. I have been using them for almost one month nightly. IT started off slow but now I think its really has worked. I am going 1-2 times a day with barely any urgency, no blood, etc. I have asked around with alot of other non UCers and they all said a little bit of urgency is normal..I asked my doc as well and she agreed.

The only thing holding me back from saying yes I am in remission is that one early morning BM. Other than that all day I feel great..not gassy..no low back pain lingering around..etc just feeling like I have a normal gut!

So my question is for tohse of you in remission. Do you go AS SOON AS YOU AWAKE? meaning..you open your eyes and your bm starts brewing up right away?

I have been told by a few here that if anything is in the lower area when you awake you will surely have a BM ..well my enema is in the lower area as I have retained it all night..so that usually comes out with a small bm every morning- IS THIS NORMAL or still a sign of a mild flare? After this I may have another BM or may not..depends on a few things..

Another thing I have noticed is that I am tossing between 1 and 2 bms usually..if there is ever a day with 3bms..I will surely have only 1 small one the next day. and then the next two for sure..like a pattern..

so really i just want to know if this early morning BM will subside and then I am in remission or if this is only happening cause the remains of the enema are still in the lowre area waiting to come out in the morning when my bowels "awaken"

What are your symptoms or bm schedules when youare NORMAL?

Posted 4/3/2010 3:44 PM (GMT 0)

KrissyUC said...

So my question is for tohse of you in remission. Do you go AS SOON AS YOU AWAKE?

When I'm coming out of a flare, urgency is the last to go. It takes time for the colon to heal. When I've been in remission for awhile, I still usually go in the morning, usually right after eating something.

KrissyUC said...
What are your symptoms or bm schedules when youare NORMAL?

No blood. No diarrhea. Very little gas. No bloating. Very little urgency, which only comes in the morning after eating something when I'm at home. I usually go once a day in the morning. However, I can hold it in if I didn't go yet and I went out hiking.
Posted 4/3/2010 3:49 PM (GMT 0)
I believe my hubby goes first thing in the morning mostly always, and he's non-UC.
He's also long gone for work by the time my alarm goes off in the mornings..... lol

Sounds like you are allllllllmost in remission, if not there, but definitely better! Hooray!
Posted 4/3/2010 4:26 PM (GMT 0)
I really hope so. I have been at it since Feb 2008 :( Trying all sorts of things...
I really truly hope I will obtain remission and hold onto it for a nice length of time...if not..at the very least I have learned so much from here on how to handle things when I am faced with them...!
Posted 4/3/2010 4:26 PM (GMT 0)
Good for you!!! :-)
Posted 4/3/2010 4:33 PM (GMT 0)
Sounds to me like your very close to remission. Keep doing what you're doing.

I have had days with 2 BMs while in remission so that shouldn't be cause for concern. Main things I watch for are pain, blood, and mucus. As long as they're decreasing, that's progress.

Just don't jump the gun in returning to anything lifestyle-wise that might upset. Don't want to backtrack on all the progress you've made!
Posted 4/3/2010 4:36 PM (GMT 0)
KrissyUC:

Sounds like your in remission to me.  That's as good as it gets.  When I wake up I often feel as though I have to go to make a BM.  When I am feeling at my ultimate best I can forget the bathroom and go downstairs and have some breakfeast. However once I have finished eating or am half way through my body will often let me know it's time to go.  I go and then I am usually good for the whole day.  If not I might go once more, no more.  Othewise I am not in remission.  A little urgency is normal in my book.  When my wife, a non UCer, has to go #2 move out of the way she's gotta go. 

So, relax and kick back and enjoy your remission.  Sounds great if you ask me.  Hope it stays like this for a long time.

MyUC

 

Posted 4/3/2010 5:02 PM (GMT 0)
Normal for me I would say is 1 or 2 BMs a day, with no watery substance on my TP or stool and normal round shape, not flat. Also my gut doesn't feel as bloated and sensitive normally.
Posted 4/3/2010 5:32 PM (GMT 0)
Go with your symptoms and start tapering to every second night if you believe you're ready, and see how it goes.

Use the suppositories on the night not using the enemas.

You're definitely out of the flare, per se.....not getting worse, on the enemas almost a month....if you feel you're ready, try every second night.

Stay on every second night for a month, however.

You're doing awesome.....it's definitely celebration time!

quincy
Posted 4/4/2010 1:48 PM (GMT 0)
well done

wish you all the best hope you continue in good health
Posted 4/5/2010 1:28 PM (GMT 0)
Thank you everyone..I had a great weekend as well. 1BM per day and no rushing to the bathroom upon opening my eyes...I actually lay in bed awake ..and even went back to sleep!yay!

I want to take this really slow and I dont think it will hurt. I have an eye surgery coming up in may, my sisters wedding in june and all kinds of stuff planned for the summer so I really want to be careful.
I will stay on nightly for another couple weeks before I start every other night and go from there.

With regards to going from 8 to 6 Salofalk a day , can that be done NOW? or wait till the other taper with the enemas is over with?
Posted 4/5/2010 1:59 PM (GMT 0)
Personally, I would stay on the 8 Salofalk for now, for a few months after the enemas taper is done, anyway.
Ive actually never reduced my Asacol dosage, even in remission. Seems as if whenever I think about doing that, some inflammation appears again and it's a moot point.
Posted 4/5/2010 3:28 PM (GMT 0)
Thank you SonGlady..
I need to reduce something..maybe the vsl? I cant afford to be on all these meds..I was thinking 6 Salofalk a day and the enemas twice a week would be good to keep me not inflammed for while..at least I hope!!
Posted 4/5/2010 3:59 PM (GMT 0)
Sounds like you're doing really well! I'd say to taper only ONE thing at a time, and wait at least two weeks after you taper one thing to taper another. Also, when you're tapering the enemas, go to every other night for a couple of weeks, then to twice a week.

Good luck!
Posted 4/5/2010 6:12 PM (GMT 0)
I am really wondering if UC flares start from the bottom and work their way up- why arent we all on rectal meds ALL the time? why not use the orals for flares...if the bottom is maintained all the time, there should be no need for the orals? I know this is kind of weird thinking but I dont think Im totally OFF either...
Posted 4/5/2010 6:14 PM (GMT 0)
I imagine that it COULD start to flare beyond the reach of a rectal med if oral meds aren't covering the upper part.
Posted 4/5/2010 8:43 PM (GMT 0)
No, they start at the rectum....unless one has rectal sparing, but that's when the rectum has already fatigtued with obvious cellular damage from continual inflammation.

Different issue.

Yes, why aren't all UCers on rectal meds? ask their doctors.

You're in too much of a hurry Krissy, especially considering where you were in the past.
Stay on the 8 Salofalk oral till after the celebrations. Consider to decrease AFTER, maybe in the summer.

With the tapering, I think stay at the nightly for one more week since you've now got no urgency with a bm and use the suppositories on the nights not using the enemas.

Go to only twice a week enemas, or if you decrease more, stay on the suppositories nightly.

Yes, decrease the vsl.

The meds are expensive....yessiree.

Please don't be in a hurry....pleeeeeeeeeaaaaaaaaaase.

quincy
Posted 4/6/2010 1:31 PM (GMT 0)
If they start at the rectum why not save the orals until we need them? like until it reaches there IF it does? The rectals should be good enough then I would think..
My big flare started out with loose stools...no pain, no realy urgency, no tenesmus..to me that sounds like it started higher up..later on there were more "rectal symptoms"..so im not sure where my flare actually started..the worst of it felt like it was at the rectum EVENTUALLY but not from the start.

Q- not in a hurry per se.. trust me, I dont want this coming back any time soon..is it possible to stay on the enemas TOO LONG? I ask because I have decided to stay on them nightly for another 2.5 weeks before I refill again. Once I refil I will go to every other night for a month. And then twice a week. Throughout the day I feel normal. No urges, no lingering pains, normal amounts of gas etc.. but my bms are still strange,..sometimes thin, sometimes normal, sometimes formed, sometimes hard, sometimes mushy..so I want to be careful until I see some consistancy.

With regards to decreaseing the vsl. I do want to still take a probiotic. So I was thinking to either take VSL every other day OR take a cheaper one daily? I am leaning more towards VSL every other day right now..but would it still be in my system for the day off in between?
Posted 4/6/2010 8:15 PM (GMT 0)
The point to be on an oral topical 5ASA is to KEEP IT ALL NICE AND CALM. Besides it's believed to help prevent cancerous changes in the colon....makes sense if the colon isn't inflamed continually. Remember, there are different degrees of inflammation. the mildest cannot be seen or even felt...not worth it to me.

You have pancolitis...more of a reason to be on oral 5ASA...especially since they work for you. They can be decreased once you're out of a flare, but to a level that will be effective as maintenance.

Rectal...sounds like a good plan.

Don't bother with the stool consistency.....you'll have ups and downs, as long as you're not having the urgency with discomfort. Depends on what I eat, consistency changes. If I've been distressed, sometimes thinner stool.

Remember that most of us have IBS too....my butt takes over for my brain sometimes..lol.

No, not possible to be on the enemas too long. I know of a woman who was on them for a year. Don't know how she's doing, however....lost contact.

You've not been on them for a long time. You have a good plan. Your butt will tell you whether tapering was too quickly.

Why not take half a pack of the VSL daily? Take it at night before bedtime maybe?

q
Posted 4/7/2010 12:59 PM (GMT 0)
I guess I can talk half a pack of vsl but its kinda hard to gage "half" a pack the way they are packaged. Thats why I was thinking every other day instead. Surely 450 billion bacteria can not be gone in one day?
Posted 4/7/2010 2:09 PM (GMT 0)
LOL....probably not! I've never tried the VSL....I think it comes in capsules too...I might check them out "just because".

q
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