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Crohn's Disease
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Posted 12/17/2009 4:52 AM (GMT 0)
Well, I had my colonscopy today and I found out that my Crohns is back at the resection area. This really sucks after having surgery in February and thinking that I fianally licked this darn disease. I'm really bummed but I got the answers that I wanted.

Merry Christmas to me. :-(

While I was out the doctor wanted to put me on Prednisone but my wife said "NO"

He recommended that I go on either Remicade or Humira as his patients have done well on either of those.

Anyone have any ideas for me as to which one is the better and safer of the two?

Thanks!

Wolfie  :-(

Posted 12/17/2009 5:04 AM (GMT 0)
Sounds like a tough situation Wolfie.  Life isn't always roses. But over and over people here talk how it's good to eat well, and take maitenance meds. Beyond that, reduce stress, maybe exercise. You take what life gives you. I guess this is why having surgeries is iffy, due to the somewhat high rate of reoccurance. However, maybe in your case, you would have been really bad off if you would have had this new site of inflammation and the old one. So everything has a purpose. I'm guessing you probably have only mild symptoms? But if so, then im not sure why the doctor would want you on prednisone...Either way, as long as your not too narrow,  you probably have a good chance with a strict diet, like SCD. I'd try a low residue form of SCD (specific carbohydrate diet), and remicade. Usually Humira is second to remicade in the treatment ladder. What have you tried for diet so far? Could you take a short 5 day dose of prednisone without a taper? or start at a safe dose like 30mg ish?
Posted 12/17/2009 7:32 AM (GMT 0)

I am really sorry to hear this Wolfie. Hopefully others will be more helpful towards you making a decision.  It's tough to have to do this so soon but the surgery might have been necessary at the time.

I wanted to thank you for the kind words regarding my father. He got out of the hospital the day after your reply, home a week and back to hospital yesterday. Probably won't come home again.  Life throws you curves and they say try to reduce stress?

Best wishes and Merry Christmas to you and your wife and hoping for the best for you.

Colleen

Posted 12/17/2009 9:30 AM (GMT 0)
Hi, Well for me I did Remicade for 5 years did really good with it but got to expensive for me.
So I now am on Humira alot cheaper it works the same.
Posted 12/17/2009 11:35 AM (GMT 0)

teddybearweiser said...
Hi, Well for me I did Remicade for 5 years did really good with it but got to expensive for me.
So I now am on Humira alot cheaper it works the same.

What about all of the bad things that you hear about with these drugs (TB,MS,Lupas,Lymphoma,death, etc) Is this something that happens often or are they required to put the warning labels on the product.

I'm not sure how expensive these drugs are and what my insurance will charge me.

Do you use the Humira pens, and how often to you take them?  Do you have to get regular blood checks?

 

Thanks

Wolfie

Posted 12/17/2009 11:42 AM (GMT 0)

Bammer said...

I am really sorry to hear this Wolfie. Hopefully others will be more helpful towards you making a decision.  It's tough to have to do this so soon but the surgery might have been necessary at the time.

I wanted to thank you for the kind words regarding my father. He got out of the hospital the day after your reply, home a week and back to hospital yesterday. Probably won't come home again.  Life throws you curves and they say try to reduce stress?

Best wishes and Merry Christmas to you and your wife and hoping for the best for you.

Colleen


Your welcome! Life does throw you curves as I sit sit here and wonder "Why me" what have I done. I'm a good person, I help people, eat right, exercise, etc.

I really thought that the surgery was going to do it for me along with taking my meds and eating right. Now I need to make a decision on which of the Big gun drugs do i take which i thought that i would never need. Oh well!

I really hope and pray that you and your family can come together during the holiday season and enjoy possibly your fathers last Christmas together.

God Bless!

Wolfie

Posted 12/17/2009 12:01 PM (GMT 0)
Wolfie,
Sorry to hear that your Crohn's has returned so quickly. I know how depressing this can be. I experienced the same thing and it took me awhile to accept the fact. My GI now wants to put me on Remicade but I am going to put it off as long as possible. I have been doing a combination of prednisone, Entocort and Imuran since August and am feeling pretty good. I am now weaning off the steroids and hope I stay healthy.

Santa could of brought you a big screen TV instead of the same old gift he always brings....Crohn's. Maybe he is loosing his creativity.

I wish you the very best!!
Elizabeth
Posted 12/17/2009 2:38 PM (GMT 0)
Throwing my two cents in on Remicade and Humira;

I'm in the middle of a three month flair ... Monday, my GI suggested we might want to "think" about adding Remicade. When I talked to the nurse, she informed me as of January 1st, my insurance won't cover Remicade. Hmmmm ... that kind of makes it easy for me to decide which one I choose. I also understand that Humira and Cimzia has reimbursement programs. The nurse said, after insurance and the reimbursement, it's almost affordable. !!

kia
Posted 12/17/2009 5:13 PM (GMT 0)
Wolfie this is some information from the CCFA regarding the recurrence of Crohns after a resection.

Disease Recurrence after Surgery
about 50 percent of adult patients will have a recurrence of symptomatic Crohn's disease within five years after having a resection. The disease usually recurs at the site of the anastomosis or ileostomy.

The chances of a recurrence can be reduced by taking medication, such as 5-ASA agents and immunomodulators.

Recurrent Crohn's disease often can be successfully treated with medications.
Posted 12/18/2009 12:36 AM (GMT 0)
Sorry to hear your Crohn's is back.  DH is on Humira and has been for 3 years.  He has not had any of the side effects as of yet...except the one to the wallet!  He took Remicade when it first came out a few times without any improvement.  Doc tried it later with new protocol and he had a severe allergic reaction to it...no more Remicade.  He takes Pentasa, Ranitidine and Prednisone.  As if the Crohn's wasn't enough, he has two abdominal fistulas.  darn disease, I don't know why they can't find something that really works.  Something else would have to replace the big bucks they make off of Crohn's patients!

Sorry, bad mood this evening!

Posted 12/18/2009 12:50 AM (GMT 0)
Thanks all! yes, Nanners I new i was rolling the dice after surgery. I was hoping I was going to be on the the positive side. I should have listened to my doc after surgery and went with Methotrexate or Imuran. I blame myself for this one. Now I just need to get this under control. I called my doctors office today and they already have the paper work going for Humira. Wow! thats fast! So I guess I'm going on Humira.
Any idea what insurance covers and/or out of pocket price. They have not told me yet.
Posted 12/18/2009 1:12 AM (GMT 0)
Hi Wolfie. I'm so sorry to hear that your CD is back. Don't beat yourself up over not taking the medications your doctor recommended. The same thing could have happened. I had a resection in Feb 08 and my doctor wanted me to go back on Humira. I wanted to take Pentasa for maintenance. I have a colonoscopy tomorrow. I hope I'll get good news. If not, I'll have to make the same choice you faced.
Posted 12/18/2009 11:05 AM (GMT 0)

Im sorry that your CD has come back too.

I had a resection in Sept. 07 and only had a few months relief till it grew right back - although unlike yourself, I plodded along, just kept upping the pred.

Then I had the flare from hell where even upping the pred didnt help, so although I felt the same way about the biologics as you, I knew I needed something else

I was really scared to take Humira, but then after the flare from hell I became scared not to take it.

I have just completed my second maintenance dose and I have to say I think it is working really well. I do have urgency issues, but no more pain and less frequent bm's - and that for me is a godsend smilewinkgrin

I have even dropped my pred down to 10mg which I havent been down to in years, so I am hoping this is the med that gets me pred free.

I worry what these meds are doing to my body, but uncontrolled Crohn's would be doing much worse.

Good luck with your decision and let us know what you do decidesmile

Oh and one day I must get some tips from you on Labradors - I have a very naughty one year old golden Lab, who is too loved and spoilt by allsmile

Jo

Posted 12/18/2009 12:24 PM (GMT 0)
Your right as if Crohns isn't enough and then have to take all of these different or combination of meds. This really sucks!!!!
Good Luck Ski Bum! Thanks for the kind words. I hope all goes well with your scope.
Sydney, are you taking Humira and Methotrexate? What type of blood work do they do before starting? I'm really glad to hear all of the positive things about Humira, it makes it alot easier to go along with it. Your right about Crohns doing more damage then the meds.
A one year old lab, male or female? My male didn't grow up until about 2 years old,but my female was an angel from day one. I love my spoiled lil kids! :-)

Thanks all I'll keep you posted as this new chapter of my life starts.
Posted 12/18/2009 3:56 PM (GMT 0)
Wolfie - my Crohn's is back too. The doc found at least 6 areas of ulceration in the small bowel. I'll see him next month to talk about another medication. I had 1 1/2 years off meds (except Pentasa). I'm glad I had the little breather, but here we go again. cry I'm going back to bed. Maybe this was just a bad dream.....
Posted 12/18/2009 11:57 PM (GMT 0)
I'm sorry to hear that Ski bum, I thought it was a bad dream also. At least you had over a year compared to my 10 months. Like I said, I should have listened to my doctor after surgery and went with Metho or Imuran. He said that Asacol and Pentasa are entry drugs. I see that alot of doctors are now hitting new Crohns patients with the hard stuff right away, my only concern is if they stop working what do you do next? Drug trials?
I got approved for Humira today, now I need to go and have a TB test done and after that set up time with the nurse for loading doses. I really hope this works and keeps the Crohns away for a long time.
*SIGH*
Life is full of surprises.....
Posted 12/19/2009 12:16 AM (GMT 0)

Wolfie - Im glad you got approval for Humirasmilewinkgrin

I hope it is the med that works for you.

 It sucks that neither you, Skibum or myself got much relief from having had surgery. After surgery I was on MTX and pred and still the CD grew back, so dont beat yourself up about not having taken the big gun meds after surgery.

As for blood works, I have been having them done every four weeks since starting the Humira and I visit the Gastro this Wednesday for the results of the last blood tests - she is really keeping an eye on these at the moment.

My Lab is a male and I have been told it can take up to 3 years before they are 'sensible'. He actually makes Marley look well behaved turn He has cost me a fortune in Vet bills due to hurting himself out on the farm I take him too and has two nasty scars to prove it. He so loves to go there that I cant not take him  - just wish he was less excited and a little more cautiousrolleyes

Again its great news about the Humira - let us know how you progress with it and dont hesitate to ask questions, as I picked a few brains on the forum myself and found them very helpful.

Jo

Posted 12/19/2009 1:48 AM (GMT 0)
My male was a devil dog, he really pushed my wife's buttons. I was the pack leader followed by Hunter and then came my wife. i told her she needed to become more forceful and show him she is number 2. It took a while but she is now number 2 in the family.
Question, what about traveling while on Humira. Any concerns about going out of the country? I also heard the you have to be really careful not to cut yourself. Any truth to this?
Posted 12/19/2009 11:09 PM (GMT 0)

Wolfie,

I havent been OS while taking all these meds, so not sure about that.

As for cutting yourself - I had a double staph infection on my foot last year (before Humira) it started out as a small cut and bandaids wouldnt stay on it and being summer and sandal season I guess I wasnt careful enough. What Im trying to say is I guess I was more susceptible to infection due to the pred and MTX and just having a weak immune system from CD anyway.

And I agree about the Alpha male - with Buster, he knows my husband is the Alpha male, then Im second. its the rest of the family that he disobeys and as we cant be around all the time he will run amok for them - smart animals arent they:-)

Jo

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