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Goodbye remission! Thanks for the good year!

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Ulcerative Colitis
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Posted 3/12/2014 4:28 PM (GMT 0)

Scott Z said...
You know, in my humble opinion.....missing two nights in a row doesn't really "start" a flare...it's been there all along and it just kinds of reared it's ugly head because of the missed doses, that's all.

I personally, and we all probably do, seem to ignore our symptoms the longer we have this disease and tend to blame it on anything other than us ignoring it..like we missed a dose. Plus, even when we 'think' we feel well, if we ask any un-impaired bowel person..we are really screwed up gastrointestinally ALWAYS!! Our 'normal' isn't even close to the real world's normal I think.

My perfectly healthy wife poops like every 3 days...WHAT THE HOLY HELL?!?!? Where do we sign up??


I suppose it's all a matter of semantics, but I;m trying to make it sound less your fault than it is. You didn't start a flare as much as your body was already kind of in one but being held in check of symptoms by the meds. It takes more then a few days to really start a good flare.

stop beating yourself up! It was there always, it just was always there and popped up because you missed a dose, it wasn't caused by it....be well!




I used to only poop every 2-4 days, one big one. It wasn't until I became a nurse that I found out I was "weird!" I would give anything to go back to being weird! Lol
Posted 3/12/2014 5:18 PM (GMT 0)
Now I'm bleeding. :( I'm so upset. This is in the middle of my half marathon training too. I'm calling the doctor later today. UGH. Sorry.
Posted 3/12/2014 5:54 PM (GMT 0)
So sorry Sara...I would def ask about the Cortifoam. Also since I am in the nightly Rowasa club...just a suggestion..if you know you'll have trouble doing it at night (i.e. Sleeping over boyfriends house) try doing it earlier in the day if possible. It will stay in longer and you won't have to worry about doing it later. Hopefully by the time you hang with your boyfriend, it will be done shloshing around..lol. I have done this before when I know I'm going to have a late night.

Keep us posted on how you are doing.
Posted 3/12/2014 6:49 PM (GMT 0)
Thanks. Yeah, I did my rowasa in late afternoon last time I went to his house. I dont understand how things can go to crap within a matter of a couple of days. I want to take this pred in my cabinet... Left a message with the doctor. He is a 1.5 hour drive from me. I was scared to drive one mile home today and crying in the bathroom at work due to so much pain. :(
Posted 3/13/2014 12:49 AM (GMT 0)
I started myself on 40 mg pred. Was this really stupid? Dr didnt call back. It's what I wouldve asked him to start me on anyway...
Posted 3/13/2014 7:58 PM (GMT 0)
Sara14 - has the doctor called back yet? I don't think its stupid but its best to get him on board asap.
Posted 3/13/2014 8:03 PM (GMT 0)
I spoke with the nurse this morning. She is going to check with the doctor and is supposed to call me back later today. I didn't get reprimanded for starting the pred, and I feel 10 million times better already!!! I started myself on 40 mg yesterday. The nurse said my doctor (this is a newish doctor for me) usually starts patients on 60 but since I've already started he may keep me at 40. We'll see. Thanks for asking!! :)
Posted 3/14/2014 5:46 AM (GMT 0)
My gastro considers 60 mg/daily to be the highest permissable oral dose & would likely start you at 40 with severe but limited inflammation. Did the new gastro offer to switch you to Lialda or Pentasa? I don't think he should rule out oral 5-ASA sufficiency as your treatment/maintenance just on Asacol response alone. (e.g., Fruitgirl got to remission from pancolitis on Pred, but has been maintaining on Apriso + p.t. Rowasa.) / Old Hat (33 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 3/14/2014 2:21 PM (GMT 0)
Hey Old Hat! :) I spoke with the nurse today. They are keeping me on 40 for 3 wks. Then 30, 20, 10 for two weeks each. This is what worked for me last year. Im feeling pretty good today overall. Lots of urgency though. We havent discussed changing my Asacol much but Im sure he would if I wanted to. I think it works pretty well for me. They arent making me drive the 1.5 hours into the office to see him for this so im grateful for that. Im in the middle of half marathon training. Looks like i'll be on pred for the half (May 3). I was signed up to do a 5k this weekend and am bummed i wont be able to. Oh well. Could be worse.
Posted 3/18/2014 3:04 PM (GMT 0)
Doing great on the pred! This stuff is magic. Let's just hope I stay in remission when I taper off like last time. :)
Posted 3/18/2014 4:26 PM (GMT 0)
Wishing you the best!

Do you still have Pumpkin?
Posted 3/18/2014 4:29 PM (GMT 0)
Thanks girl! Yes, Pumpkin's doing great! :) Love her so much.
Posted 3/18/2014 4:30 PM (GMT 0)
Aw... Glad to hear that!
Posted 3/18/2014 5:50 PM (GMT 0)
Hope you'll be able to taper the pred fairly quickly with no problems. what's the schedule for it?

Hugs to Pumpkin (and you).
q
Posted 3/18/2014 8:49 PM (GMT 0)
Thanks quincy! :) I'll say hello to Pumpkin for you.

Taper schedule is 40 mg for three weeks, then 30, 20, 10 for two weeks each. Worked last time. Fingers crossed.

Posted 3/18/2014 9:05 PM (GMT 0)
Hi Sara14,

"It is my own fault. I missed two nights of Rowasa in a row.", "I really shouldn't have skipped the Rowasa"

Self-blaming is not helpful, you are human.

"I started hydrocort enemas last night without doctor's guidance."

Self-managing symptoms with meds, diet, stress reduction, etc., is expected. If you really aren't comfortable initiating treatment as soon you detect symptoms - I suggest that you discuss with your prescriber and know the parameters for home Rxing and when to call the GI advise nurse, or schedule an appointment.


"give me a break, I just started dating a new guy" ..."haven't brought up the fact I have to shove meds up my butt nightly yet"

about dating and intimate relationships, with whatever state of the body - keep your self-talk positive and optimistic.

"... this sense of spirit that I would never, never, give up, no matter what else happened."

Here are some of my thoughts on the subject of relationships with IBD in the mix. A simple caveat; the following are easy to talk about, but harder to practice:

If you are afraid of telling him - he will likely sense it and react by following your lead of being afraid or disgusted, or whatever emotional attitude you display (consciously & unconsciously).

It takes time to accept and adapt to having bowel disease. So too, a potential lover/mate needs time to accept and adapt, vicariously though, through our experience.

If they favor some image of a 'perfect' companion (or 'smoking hot gorgeous' or whatever ...), over who you are, would you, could you ever feel adequate - even without health issues? Is that dynamic one you could persuade yourself to pursue and live with?

It's a journey learning to live with and thrive with whatever life presents. Hating one's own body or parts of it becomes a trap, ensnaring our psyche and robbing our soul.

In my own experience, accepting, adapting and making peace with my own aging body (now with IBD), emotional challenges and changing life circumstances - all at once is taking several years.

Is it because of having a chronic disease in the colon/bowel rather than a kidney or other organ - that makes it seem so hard to adapt to?

Being able to talk comfortably and 'matter of fact-like' about my pooper was a breakthrough. And then humor, laughing at myself and poop comedy, ... was another level of acceptance. Of course, antidepressants have helped enormously by keeping me above the line of self-harm the first few years; and for the past few years becoming (relatively) more functional, especially socially.

I wish for you Love and Happiness,
Ciao - Denny Rae
Posted 4/3/2014 5:15 PM (GMT 0)
Went down to 30 mg yesterday morning. Last night I was depressed and bawling over nothing. Not sure if it was pred related but Im guessing so?? Feeling good so far. Noticed a few whole Asacol tablets in my BM today. Im keeping my diet immaculate, cut out processed sugar about a week ago. I re-started Rowasa last night but not sure how often I should do them while at this dose of pred. I go down to 20 in two weeks.
Posted 4/3/2014 5:20 PM (GMT 0)
I did Rowasa nightly the entire time I was on pred -- why wouldn't you?
Posted 4/3/2014 5:22 PM (GMT 0)
Because I want something to go back to when I no longer have the pred, if that makes sense. They aren't needed when the pred is making me inflammation-free.
Posted 4/3/2014 5:24 PM (GMT 0)
Kinda like I have zero allergies while on pred as well so I dont need my allergy meds or not as often. My doctors said its unnecessary to take the enemas while on pred.
Posted 4/3/2014 8:39 PM (GMT 0)
My GI also said mesalamine enemas are not necessary while I'm on pred and now that I'm starting imuran, but I wanted to keep on them. I think they're the least harmful and they do help reduce inflammation!
Posted 4/3/2014 11:24 PM (GMT 0)
Yeah. Im assuming I'll be on them nightly again once off pred.
Posted 4/4/2014 4:50 AM (GMT 0)
Be positive, be strong, and be hopeful.

I know that pain all to well, you will see brighter days sooner or later. Hang in there.

Much love.
Posted 4/4/2014 9:37 PM (GMT 0)
Just curious, did you tell the new guy you're dating about the nightly enema thing?
Posted 4/11/2014 7:59 PM (GMT 0)
I take back everything good I've said about prednisone. It's making me go crazy. Irritable, super moody, bawling every night over nothing. The first three weeks on 40 mg I was great, super happy. When I went down to 30 last week, I started getting moody. I just left a frantic voicemail to my gastro saying pred is making me crazy and asking if I can speed up my taper schedule and/or if he will prescribe me more xanax (I only have enough left for another month and don't go to the psych doctor who was prescribing it anymore). I've been thinking about things that I haven't thought about much in a long time. Bad things that happened last summer. I need to get off this stuff ASAP.

I'm supposed to go down to 20 on wednesday, then 10 two weeks later, then off two weeks after that. Do you think I can speed it up? I have no UC symptoms currently. I'm doing Rowasa twice a week, but plan to increase as I continue to decrease the pred.

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