New to the Forum...And need advise!

[Lj20]

Hi Everyone!
New to the Forum and need some advice! I'm a 49 year old male, diagnosed with Crohns at 15 years old. Had one resection surgery in 1997 and been on Imuran for the past 14 years. Bad year this year, had inflamed Lymphnodes and tested negative (Thank God) for Lymphoma but now have another dilemma, after a colonoscopy my doctor says I have inflammation and strictures in and near my rectum. Feel pretty good so it's hard to believe this is happening! The doc wants to put me on Remicade otherwise could get worse and lead to a colostomy. As you can see my choices aren't good and SCARED as hell about going onto REMICADE! Any one out there every experiance this? Did Remicade help? Very stressed and needless to say, ruined the holidays!...

 

[TeresaPro]

The remi worked wonders for me , but after my 7th infusion they found it was mucking up my liver so, i am going to try humira.
No major side effects while i was on it up until then.. Bleeding stopped ( which has started up again since i am not on anything right now) minor headache, and itchy skin , but benadryl and tylenol before my infusion worked great. I hope it works wonders for you too!!! Don't read to much into the side effects, if your anything like me, you mind will go into over drive.
The nurses who do the infusion are there for you, checking you all the time. I loved them!! Bring a book, maybe something to eat, your lap top, or take a nice nap.
Healing thoughts sent your way!

 

[mikeyarmo]

Welcome Lj20!

Sorry to hear about your recent health woes.

May I ask why you are so scared about Remicade?

We have a dedicated Remicade Forum where you can learn a lot more about this treatment option.

I think you have to really consider the pros and cons of each option you have. Are you willing to accept the potential need for a colostomy? Do you think there is any other treatment option you would be willing to try?

I am sorry such a hard decision has impacted your holidays, but hopefully you will be able to make a choice that will lead to years and years of happy holidays going forward .

 

[Lj20]

Thanks SO much for the replys...It's tough when you feel pretty good and they want to change your medication. I hear alot about Remicade and the adverse effects so yes, my mind is running overdrive! I respond to Predisone but they say the side effects are worse with Predisone...UGH, decisions! Once again, thanks Teresa and Mike for the support....Joe

 

[dragonfly]

hi there!! my choices where the same, i started remicade and so far so good! and thats great advice not to freak yourself out over the side effects, i did and im doing fine on it!! i do my infusions on fridays, it does make me very tired and feel run down so it gives me the weekend to get over myself and feel better by monday!! your 1st infusion will be the longest so be prepared for that, mine took almost 7 hours!!!! i slept awhile and that helped pass time, a book is good too but my eyes where bouncing around from the benadryl so couldnt really concentrate on the words! it is a tough decision but i'm glad i went with remicade and i hope you are happy with whatever you decide as well!! best of luck to you!!!

 

[Lj20]

Thanks Dragonfly!
Glad to hear you are doing better...It's really hard when you are not feeling that bad to make a change. But the doctor tells me trouble "may" be around the corner..AGH! Trying to not let it get to me and have some tough decisions ahead of me...I'll keep you posted...Thanks again!

 

[Angrybird]

Hi Lj20, it's always disappointing when you think things are going well to be then told there is a problem. I will keep my fingers crossed that the new treatment plan will work for you.

 

[Jessi]

Hi Lj and welcome to the forum.

I was told the same thing... Remicade or surgery. My head was swimming with the fear of something going wrong because of Remicade. But I have recently had my 5th infusion, and am in a very comfortable remission. I only have 1 BM a day now and no bleeding!! I's fabulous! 2 nights ago, I was able to host a hotel slumber party for my 13 year old and her girlfriends. I never would've been able to do that before Remicade.

However, having the surgery may be a good plan for you, too. Many people are very happy that they opted for that and do not regret having an ostomy. Feel free to read a bit here in our Stoma Sub-forum. http://www.crohnsforum.com/forumdisplay.php?f=46

Good luck on the big decision. And again, welcome to the forum! :hug: Have a great holiday season!

 

[Sybil Vane]

I recently attended a Webinar (or however you spell it) on CD treatment options and the IBD specialist said that if a patient was symptom-free, they used to not recommend a med, but would wait to see what happened. They now believe that this is not the right way to go and that it is better to recommend the meds to prevent something worse down the road (like a colostomy). It seems like your GI wants to be proactive, and just because you don't feel worse, it looks like your disease is breaking through the Imuran so I can see why he would want to add Remicade. I was scared of Remicade, too, and I will always be respectfully scared of these meds, but I haven't had any side effects from Remicade in the 3 years I've been on it. I experience some bone pain the day of the infusion but it's not too bad. I'm always in favor of doing whatever you can to avoid surgery, but I do know it's a personal decision.

 

[crazycanuck]

Hey there welcome to the forums. I'm on Remicade at the moment and it literally changed my life. I'm a huge advocate for its use and have nothing but good things to say about it from my experiences.

And if that's not enough there is always exclusive access to the Remicade Club here on crohnsforum.com :lol:

http://www.crohnsforum.com/showthread.php?t=4544

In all seriousness I know it comes off as a very scary disease but in reality there can be side effects to literally anything. I know it's your decision but to me the choice of Remicade over surgery is an easy one.