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Feeling good on Prednisone - Still need surgery??

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Posted 9/4/2012 3:03 PM (GMT 0)
Hi,

Long time follower, but this is my first post :-)

I was diagnosed with Crohn's in 2005 (in the jejunum). After one hospitalization for a partial obstruction, I started Remicade in Feb 2006 and enjoyed a symptom-free life for the next almost 6 years. However, after a colonoscopy last November, I've had problems ever since (the all too familiar sounds, pain, bloating, etc). Since then I've been Prednisone dependent. I'm currently on my 4th round. Each time I start at 40-60mg per day and taper down, but once I'm completely off I'm hurting again w/in 2-3 weeks and have to start the regimen again.

My GI says it's time for surgery. My question is - is there anyone out there who went through several rounds of steriods, while still on a maintenance drug like Remicade, and finally went back into remission w/o surgery? I don't feel like I'm jumping the gun with surgery, but it's hard to think about that when at this moment I feel pretty good.

Any advice or experience is appreciated!

Posted 9/4/2012 4:43 PM (GMT 0)
Pred can always fail and then you'd really be up the proverbial s-creek without a paddle. But even if it doesn't, it's a drug with horrible long-term consequences. The longer you stay on Pred, the closer the inevitability of side-effects reaches 100%.

So my answer is: surgery, get it done.

Edit: It may be worth switching over to a different biologic, eg Humira or Cimzia. Even so, it's just a matter of delaying the inevitable until those drugs stop working too, but they may buy you an extra few years of surgery-free time, which is not to be entirely sneezed at.
Posted 9/5/2012 12:34 AM (GMT 0)
I have been told it depends on whether it is scar tissue or just inflammation..If it is scar tissue then surgery is the only option..Now lessening the inflammation can help temporarily at times..Predisone I have been left on for a prolonged period of time but if it had been an issue of scar tissue I would have opted for surgery..
Posted 9/5/2012 5:53 AM (GMT 0)
Prednisone takes down inflammation. If you are feeling better on prednisone, it means it's taking it down enough to make you feel better and for now you probably can get by on it. However, take it from a prednisone junky like me. I've been on it for years and it has affected my bones and other things. It was only last fall that I was able to wean completely off. I never felt great after weaning and was picking up flus, pinkeye, and other health complaints, but my bowel was sort of okay. It wasn't till I went on Imuran that I got my first bowel obstruction after being symptom free for years after my surgery. I was not on prednisone at the time. The hospital gave me a higher dose of prednsione for a few days to treat it, and then my GI followed up with another 6 day course of it. It really did help to save me and gave me back my appetite and I put on 5 lbs in a week which was good because I went down to 75 lbs. Problem is after I went off, I started to be symptomatic again. I held off, and did not give in to taking it again, although on some days I am tempted. Instead I take slippery elm tea, and try to soothe myself in other ways. I am getting better. The worst for me now is severe diarrhea which drains me. I could try anti diarrheal's but because of my narrowing, I am scared to block my intestine and cause another obstruction. Hope you can find answers. Prednisone can be a lifesaver but short term treatments are always best to avoid any future side effects from this medicine.
Posted 9/5/2012 7:27 PM (GMT 0)
Hi! Your story sounds a little like mine. I was first diagnosed in 2005 and had a resection of small bowel.  Lived symptom free (well maybe the occasional pain) for 7 years until Feb 2012.  I took prednisone from Feb to May - even had it intravenous at the hospital - but as soon as I started to taper down, the pain would come back.  So we didn't have a choice but to go with surgery.  Had my 2nd resection in May 2012 with temp illeostomy which was removed Aug 9 (due to high-output / dehydration). 

I should add that I started HUMIRA in April 2012 and although it didn't solve that particular problem, I am confident that this medication will be very helpful.

So sounds like surgery is the way to go for you as well.  I know it's a real pain - especially the first 3 or 4 days following surgery. I went through it but now I'm feeling great.

Good luck!

Posted 9/5/2012 7:41 PM (GMT 0)
Thanks everyone for your comments and advice!

Poissonlune, were you on any maintenance drugs after surgery or were you off of everything until your symptoms returned? I hope you continue to feel really good! I think my gut (no pun intended) says surgery is the way to go, it's just hard to think about it when I'm feeling good at the moment. But I know the pain will come back and that's what I have to remind myself.

Did you require an NG after surgery? I had one when I was hospitalized back in 2005 and I fear I'll have to have it after surgery as well...
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