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Posted 10/18/2012 9:47 AM (GMT 0)
been lurking and a few postings here and there. will finish a year on prednisone come halloween.. tried to get off again the first of the month.. didnt work ... again.. every time i get down to 10mgs or less , within 6-10 days im so bloated and in pain and closed off, i have to bump back up. then usually in 2 days im getting relief.. oh well. not the first time ive been dependant on them little pills. and probably not the last.. 

  guess ill have to discuss a balloon stretch with the drs.. my stricture is at my lower anastamosis near the sigmoid.  so its close to the scope!  smilewinkgrin ..  hope all are doing as well as you can...  randy

Posted 10/18/2012 10:16 AM (GMT 0)
Glad to hear from you, not glad you're pred dependent again. I actually had to have surgery on the stricture at my anastamosis site -- lucky you if they can just stretch it. Hope you can get off those nasty pills soon!
Posted 10/18/2012 11:40 AM (GMT 0)
Was thinking of you, Sniper, VV, Snohare the other day....heard a really sneaky pun and missed those old days here.

Sorry to hear you are stuck in second gear.  Always looking on the bright side of life I see.  Yup...nasty little buggers, but at least they are cheap and I know what they are going to do!  That was always my feeling on pred.  I stop in sporadically...hope you keep an update so we know how you are doing.

Posted 10/18/2012 2:49 PM (GMT 0)
Hello :p

I feel you on the pred dependency :-/ I'm on 30mg at the moment and am going to enquire about staying at that amount until after Christmas. I'm tired of the flare-ups keeping on coming back...

I hope the balloon stretch is a viable option. Good luck.
Posted 10/18/2012 5:37 PM (GMT 0)
Hey Randy!!!! Nice to see you hear again....so sorry that you're still suffering though :( As Habs said, I often think about you (and the others) as well hoping you all are hanging in....hopefully you'll be able to report better news soon..wishing you the best and hope you keep in touch here at HW! (((HUGS)))
Posted 10/18/2012 7:49 PM (GMT 0)
I understand the predisone dependency--am at 10mg--I had a bump for a week recently, which increasing mine now seems to have a very negative effect--hope the stretch works!!
Posted 10/21/2012 9:12 AM (GMT 0)
well actually guys, a stretch is my only option.. for those that dont knowor dont remember, i only have about 2.5 feet of intestine left and there si not enough to cut out anymore and reconect. its all adheared to the front wall of the abdomen also, so they can't really cut it loose anymore either.. will update hwen i know something.. not gonna rush int anything i think.. just keep plugging along till the pills dont work anymore ;o)... i too miss everyone here and those that have been absent. im just not in the online mood for a long while now.. stay healthy!
Posted 10/22/2012 12:00 AM (GMT 0)
Take care Randy! I think of you every time we have an election...LOL.
Posted 10/23/2012 12:04 AM (GMT 0)
Oh yeah, I sort of forgot about the 'no guts' part... :-/

Or, rather, I didn't think the profound philosophical implications of my words through.. >_>

Anyway, it absolutely sucks that your disease is still being this persistent. Best of luck, randy.
Posted 10/24/2012 1:13 PM (GMT 0)
Thanks for the update Randy! been wondering about how you were doing..t.o.y! Do you feel it may be time for an ostomy..is that an option for you? I've thought perhaps down the road for myself and if it ment no more pain or infection...bring it on! hugs
Posted 10/27/2012 7:49 AM (GMT 0)
flowery, i had a jujenostomy before .. worst thing ever.. i would rather sit on the toilet all day than go that route again.. not for me.. that was the absolute worst part of this whole 30 year ordeal.. and i still had pain and infections while i had it so , that blow the theory of being better.. ;o)..
Posted 10/28/2012 1:49 AM (GMT 0)
Ah, Randy, ... Sniper, VV .... the good ole days. *sigh* Ides is back, Keah is still gone .... *sigh* I haven't swung my broom at anyone in a long time now .... no one to make it fun and worth while.

I'm glad the pred is bringing you some relief and sure hope that the balloon dilation is an option for you and that it is successful!

I remember that you have just the 2 and a half feet but don't remember that I ever knew aabout the adherence to the front wall of your abdomen. *sigh*

(((hugs)))
Posted 10/28/2012 6:02 AM (GMT 0)
yep C2, with all the surgeries etc.. the moving and repositioning of everything, its all stuck against the front of my abdomen.. so when they get a side view on a scan or xray, there is all the barium up front and a big empty in the back. also most all is on the left side as well.. makes for an interesting shape when i bloat! ;o)
Posted 10/28/2012 4:34 PM (GMT 0)
Well, fortunately I have all but 18" of my intestines still aboard but interestingly my resection site and the dilatation above it have shifted to the left along w/a cyst on the left ovary making for some interesting films. I thought it might have something to do w/my being left handed and its seeming like everything that tends to go wrong or to cause problems happens on the left - even exterior things like a bug bite or sting or a bruise or spraining a thumb, etc. about the only problem I ever encounter on the right is the right sinus - and that is due to that 6 weeks of NG tube years ago. Still, I'm grateful I've been so blessed and so fortunate.

God bless you, Randy. May things work out for you yet again. You really are our miracle and an inspiration to us all!
Posted 11/2/2012 6:44 PM (GMT 0)
So glad to hear from you Randy! I have lurked here several times looking to see how you were and honestly it worried me when I didn't see you around. You are my inspiration! Hang in there & take care!
Posted 11/3/2012 1:56 AM (GMT 0)
Really happy to hear from you Randy!!!

Sorry to hear your Pred dependant.

Stay positive, I'm sure something new will come along.

Posted 11/3/2012 9:18 AM (GMT 0)
something new did come along! a fever! :O(....
Posted 11/3/2012 10:56 AM (GMT 0)
Hey randy; haven't been on here forever, so c2 you can sweep your broom at me. Sorry to hear randy about more issues, not a party at all. I'm stuck on 5 mg of pred, but that is all I take, small dose of pain meds, so I don't keep going and going (br). Other than that full remission, oh yea, I take a tincture, one dropper everyday. No diet restrictions, what so ever. Go below 5 mg and within 5 days I'm basically total esophageal cd flare. So remission thru med's. Is that actually remission?
Posted 11/3/2012 1:40 PM (GMT 0)
AG!!! So good to see you crawl outta the woodwork too!! I recently got an e-mail from VV! Yeah, VietVet. He even mentioned you and sends a "hi". I haven't been able to get my second response to him to go thru, his server has decided it doesn't like my server and my server hasn't cleared the air yet so I can get thru to him again.

Randy. Rats!!!!! and Double Rats!! Fer crying out loud when it rains, it pours. I sure hope Murphy climbs back in his hole, real deep, or finds someone else to pick on. One of the jihadists would be a good target for Murphy, ya think? (((hugs)))
Posted 11/4/2012 2:00 AM (GMT 0)
so far it only lasted thru this morning.. ;o) .. hopefully not again tonight..
Posted 11/4/2012 3:18 AM (GMT 0)
Fingers, toes, eyes, arms and legs crossed. Haven't mastered toe-crossing yet - but I'm working on it.
Posted 11/6/2012 5:50 AM (GMT 0)
all better so far... dr wasnt worried today as it was only a 1 day one.. joints acted up too. especially knees and ankles.. but all good now.. take my weekly humira tonight so hopefulll just that.
Posted 11/6/2012 12:45 PM (GMT 0)
Glad to hear that wasn't a long term issue.....here's hoping the weekly Humira kicks you back into "normal".  We know normal has to be in quotations right????
Posted 11/6/2012 2:02 PM (GMT 0)
Hi Randy. How's the humira going? I've heard the needle is less painful than the pen. Which are you using?
Posted 11/8/2012 11:12 AM (GMT 0)
i use the auto pen.. been ok.. only last 4-5 injections for some reason are not going all in.. occaisionally i gaet a dribble of leakage but these last few are maybe 50% or more. hence the symptoms? who knows.. if this next one on moday does the same. i guess ill have to call the company and see whats what with the lot numbers ..
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