Crohn's Disease Forum » Treatment » And it begins again...


09-24-2010, 04:20 PM   #1
MapleLeafGirl
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And it begins again...

So, I have been feeling pretty awesome, tapering down my prednisone was going great. I thought I was in the clear. I just finished my taper and I can feel all the old symptoms coming back - the pain, the bloating, the fatigue, the frequency, etc. I was telling myself it was something I ate on Tuesday (potatoes with the skin on) but it is now Friday and I still feel like crap. Could it be the skins just taking that long to work their way through? Could it be pred withdrawal? Or is it all coming back? I am still way off for my surgery, haven't even had my consult yet. How long do I wait to call my doctor and say help?
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Kelly

Diagnosed: August 2006
Current Meds: Imuran (125 mg), Budesonide (9 mg)
09-24-2010, 04:40 PM   #2
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Hi Kelly, I am sorta in the same spot right now. Finished my Prednisone almost a full week and it doesn't take long for the symptoms to come back. In my experience, I find that Pred just masks the symptoms and as soon as you come off... well, you know, pain, bloat and gas. I am on one tablet of Flagyl a day to keep it at bay. I am waiting still for my referral, both a new Gi and Surgeon. I have exhausted all meds. I see you are on an immunosuppressant. You still on 100mg of it? Do you have any other drugs available? If you become in acute pain or vomiting , that is a bad sign and I would call the doctor. Have you had blood work done? I am always in your corner, take care, keep us posted.
09-24-2010, 06:07 PM   #3
MapleLeafGirl
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Yep, still on 100 mg of Imuran. It doesn't appear to be working. My last blood work was great, but I was still on prednisone. I just had blood work today, but it was just my regular monthly Imuran blood work (just liver tests and CBC). I do have buscopan and it does help.

Sorry to hear you are still having issues and waiting for your referrals.
Thanks for your support again. I guess we can wait together
09-26-2010, 02:48 AM   #4
Dallies
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Hiya Kelly, just wanted to offer my support to you and ~Pen, thinking of you xxxxxx
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Dallies xxxx Parent of a 21 year old daughter diagnosed with Crohn's Disease in June 2010

Meds: humira

Surgery:hemicolectomy June 2010
09-26-2010, 09:57 AM   #5
Astra
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Hiya Kelly

just to offer some empathy! when I came off the Pred in May I got really sick very quick! Doc gave me a few weeks of Entocort which worked. Now I'm back on 20mg Pred, and dreading coming off!
But this time, I'm only gonna consult the doc if I start vomiting, the pains and D I'm gonna ignore!
Not going on Pred unless I'm at death's door!
hang on in there Kelly!
xxxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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09-26-2010, 10:57 AM   #6
scifi-enthusiast
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I feel your pain. I just tapered down to ten last tuesday and I've experienced bloating, diarrhea (not constant), and fatigue. The pain I've been experiencing all throughout my Pred treatment (since 40mg). Especially the new joint pain. I can't wait to see my doctor tomorrow and tell him that the meds aren't working. Now the Lortab has me constipated a lot, so...

Hope you feel better soon.
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Diagnosis: March 2008 (7 days after resection)
Surgery: 1 emergency blind resection because of hemorrhage & massive blood loss (March 2008), Reconnection of Colon (June 2008), Removal of billiard ball size abscess (Dec. 2010)
Meds: Lialda-2.4gm (every other day), Imuran-0mg, Pred-0mg, Calcium+d, Humira-40mg, Sulfasalazine-500mg
Previous Meds: Pentasa (didn't work)
Currently on SSD & SSI
10-21-2010, 02:26 PM   #7
Domsmom
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Are you feeling better? I've been trying to come down off of prednisone for months now, but can't seem to get lower than 17.5 mg... hope you managed!
10-22-2010, 01:58 PM   #8
MapleLeafGirl
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Nope, unfortunately I'm back on. I lasted three weeks being off and then I started with all the old symptoms, plus blood, which I never used to get. Called the doc who brought me in for blood work and stool samples. All of my inflammatory markers were elevated again. Still waiting on the stool results. Only good news is that I have my surgical consult November 2nd so hopefully we can develop a plan to get me through until the surgery.
10-22-2010, 07:05 PM   #9
Jerman
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So sorry that you are not feeling well my friend, and hope that it all clears up for you real soon. I do not seem to have any food triggers, only stress which starts all symptoms almost instantaneously. Hang in there Kel, here's a big ole jerman ((((((hug))))) for ya.
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10-22-2010, 11:42 PM   #10
Entchen
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Aw, Kelly, I'm sorry you've had to go back on again. Hugs to you.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
10-23-2010, 12:24 PM   #11
Astra
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Hiya Kelly

so sorry you've had a relapse and back on the dreaded one!
hopefully you'll get some answers at your consult in November, not long to wait now.
hang on in there, big hug your way
xxx
10-23-2010, 02:19 PM   #12
Walt
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Hi Kelly,
Sorry to hear you had not much luck in escaping Pred.
I find it particularly cruel the way we can seem to start doing better,
and then the bad stuff keeps trying to sneak back in.
I get to feeling like 'the wolf is always at the door',
but keep reminding myself not to let the bad moments diminish the good ones.

Sorry to hear you've started bleeding to boot.
I've bled off and on for years.
Healthy folks would run to emergency if they saw blood in the toilet.
But for many of us, it's become a way-of-life.
It takes a lot of red to get my attention anymore.

I too have had my setbacks lately, but have grown oh so tired of talking about them.

We are stronger than we know...
hang in there until your surgery consult.
I hope you find some relief.
gently,
Walt

ps I'll keep my fingers crossed for ya
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currently 'enjoying' Metho, Remi gave me Lupus, Humira pens now weekly - jury still out?
whew, just a little Prednisone?

I'm starting to think Crohn's isn't as much fun as they made it sound in the brochure?

Be who you are and say what you feel,
because those who mind don't matter and those who matter don't mind - Dr. Seuss

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getting knocked down is nothing.
bouncing back is everything.


in the end, only kindness matters...
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