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Remi no good for me...

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Ulcerative Colitis
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Posted 11/25/2009 2:58 AM (GMT 0)
So, I started Remicade in September.  I've completed my loading dose and am scheduled for my first 8wk treatment the end of December.  I saw my GI today and told him that I have not seen much difference since I started the Remi.  My GI says, since I have basically failed all other treatment options previously, that the Remi is not working either and I should start thinking about surgery.  While I was begging for surgery a few months ago (I was in a terrible flare) I am now totally freaked out because this is my last option.   

Those of you who have had an ileoanal pull through...are you glad you did it?  Have you had any problems?  What should I be concerned about?  How long did it take to reattach? 

God!  I have so many questions that I think only those that have been through what I have been through can answer.  Help!

Posted 11/25/2009 4:27 AM (GMT 0)
  about 4 and a half years ago before I got UC I had diverticulitis that ruptured. I was on an ileostomy for about 2 months. At first getting used to it was dreadful. I got some rings to go around the stoma to stop the irritation and I got used to emptying it out. By the time I was ready to have it reversed it was no longer a big deal. If my UC ever got to the point that I was miserable all the time I would definitely go for surgery since I have been there done that.
Posted 11/25/2009 4:17 PM (GMT 0)
You could ask about trying Humira, if you want.
There is an ostomies forum here on HealingWell, and if you want to talk with people who have j-pouches, visit www.jpouch.org.
Posted 11/25/2009 5:14 PM (GMT 0)
I wouldn't recommend the ileoanal pull through but request a ileoanal with a jpouch. The success rate is much higher with the jpouch than with the pull through for adults.

I ran out of medical options in 2000. I really didn't want to have surgery but realized I couldn't continue on prednsione. I had jpouch surgery in early 2001. Looking back I wished I would not have spent two years trying to get better. Life with a jpouch has been fantastic. No meds, no special diets, and no planning outings around bathroom locations. It's been very freeing. My life is predictable and I can hike and backpack again without worry.

Sue
Posted 11/25/2009 5:34 PM (GMT 0)
Just in case this helps you, my daughter also did not do well at first on the Remicade till dose 5. We were in your boat, and then the doc increased the dosage to 10 mg per kilo and it worked like a miracle. I know you might still be headed for surgery, but a dose/ frequency change or Humera seem like viable options.
Posted 11/25/2009 9:49 PM (GMT 0)
Hey there...
I just had my 7th Remi infusion and JUST started to notice an improvement. It hasnt been life changing yet or anything, but its improvement none or the less. I to, have been unresponsive to all other medications. My doc just increased my remi to every 4 weeks with hopes of maybe noticing a larger improvement... If not, I will also consider surgery.
I just wanted to let you know that Ive been on Remi since Feb and just noticed an improvement this month... some people are just slow responders. But if you are truly miserable, best of luck with endeavouring on your surgery journey. Im sure I wont be far behind you!

Posted 11/28/2009 12:15 AM (GMT 0)
Give the Remicade more time, many people had success after quite a few infusions. If you aren't experiencing any negative effects from it, keep trying.

At the same time, consult with a surgeon and get as much information as you can. I too was freaked about it when the Remicade stopped being effective for me after a couple of years, but now that I have done my homework I am ready for the surgery and step one will be January 12.

Check out this website: http://www.colorectalcare.org/ipaa.html
It is very informative and talks all about the surgery, exactly what it involved, WHY UC causes the symptoms it does ... it's a great site.

Also check out j-pouch.org which someone already mentioned.

The vast majority of people who have had the surgery seem to only have one regret: not having done it sooner.

I am glad Remicade worked for me for a time, as I was not mentally ready for surgery when my symptoms were the worst. I also needed to save enough money to get through the recovery time and enough to cover expenses if I was out for longer than predicted if I had any complications.

Now I am ready to go, mentally, physically and financially.

So, my two cents is to keep trying the Remicade, it just may kick in so don't give up on it yet, and look into the surgery. At some point you will likely need it, so find out all that is involved.

And go to http://www.colorectalcare.org/ipaa.html right now!! ;-)

Meesh
Posted 11/28/2009 1:19 AM (GMT 0)
Hi.. My son tried Remicade. It seemed to work somewhat at the beginning and then after each infusion it would work for a bit (less than a week ) and then fail....ended up he had made antibodies to it and his body was getting rid of the drug. Have they test how much drug is in your system before your infusion and also tested for antibodies? My understanding is Humera is an option if you have made antibodies, since the antibodies are to the mouse portion of remicade and humera is all human. These are really important tests as you are bashing your head against the wall if you have made antibodies and are still having infusions. Otherwise I think the thought is if remicade does not work humera is a long shot since it is doing pretty much the same thing....mopping up excess TNF-alpha.

My son had the first surgery toward a J pouch....subtotal colectomy with end ileostomy. Although surgery was not a walk in the park he is doing SO WELL. He was very sick going into surgery and now is completely healthy (for the first time in two years his blood work is NORMAL and not completely out of wack). He is 18 and finished high school last year, got accepted to universtiy ( somehow) and has deferred for the year so he has lots of time to get his life back on track. The next surgery, when they will build the J pouch and hopefully connect it is the end of January. We have been told to expect a year from start to finish to be fully recovered. He is finally off of ALL medications and feeling great. I cannot tell you how liberating it is to throw that *(&**(!! prednisone, not to mention that *(&**((*!!! colon in the garbage! It truly feels like a VICTORY...not like the disease defeated you.

Cathy ( mom of Dillon age 18)
Posted 11/28/2009 3:22 AM (GMT 0)
I also would give the remi alittle more time. I started it in July and have just now seen an improvement. I think so many people give up on it to quick. I hope you stick with it and it works for you. Good Luck!
Posted 11/28/2009 11:24 AM (GMT 0)
     So sorry to hear than some of you aren't having positive results with Remicade.  After battling my doctor about going on Remicade for the past two years, I kinda have  my tail between my legs because I felt so well only two days after my first infusion.  My main worry was that I remember I tested positive on the PPD test over 40 yrs ago while working in a hospital lab.  I can vividly remember having to go downstairs for a chest xray.  It was negative but the doctor explained that at one time or other I must have been exposed to the TB virus and it was dormant in my system.  Well, yeah, I did work in a lab and had to go on blood rounds for quite a few years.  People weren't that cautious back then, I did wear coverings on my uniform and face though.  I also had an aunt through marriage who passed from TB and we did visit her.  This was when I was a child.  Anyway, long story short, that was my main concern about starting Remicade.   Fast forward,  the nurse in my GI's office administered the PPD test to me one week before my infusion.  It was NEGATIVE!!!!  I was ready.  I suffered over eleven years with ulcerative proctitis and it was progressively getting worse.  Keeping my fingers crossed this will help me toward a long and successful remission and may God bless all of you and lead you to good health.
Posted 11/29/2009 3:31 AM (GMT 0)
thanks for all the info! I am still researching my options...
When I was in my last bad flare...just two months ago...I was ready to have surgery to feel better but now that it is my last option it's just too FINAL for me to deal with. My husband thinks I should go off all meds and get to the point I was at at my last flare, that way I wont be so scared to go ahead with surgery but as much as he cares I dont think he really knows what all that I/he will have to go through. I will continue to search for other options before I make my final decision.
Posted 11/29/2009 4:34 AM (GMT 0)
thanks for reply, from cheify
Posted 11/29/2009 2:21 PM (GMT 0)
DairyAirRN, that's a REALLY bad idea of your husband's. If you do decide to have the surgery, then you want to be healthy going into it. I am actually feeling good now, have gotten back to the gym, and just have recurring symptoms and bad days as I approach my 4th week after infusion (which I was getting every six weeks). My GI and I made the decision for the surgery now because the Remicade isn't getting me "all the way there" and my last colonoscopy and a flex sig showed plenty of inflammation in the rectal area and last few centimeters of the colon. He says while I am feeling good and am healthier than I have been in a while I will have greater chance of success and heal more quickly and bounce back better. The long term effects of the Remicade still aren't known, and while the benefit would outweigh the risk if I was completely in remission, I am not, so the equation flipped more toward surgery.

So these are the things you need to think about. That's why I my advice was to look into the surgery so you know exactly what is involved while at the same time keeping with the medical options. You'll either be successful with medical options or you won't, at which time you will have another decision to make -- and by then, having gone through more medications and done your homework on the surgery you will be able to comfortably make your decision.

Do NOT get sick again just to make yourself more comfortable with surgery. Get as healthy as you are able prior to surgery. So, if medications work, great, but if they stop working, make your decision BEFORE you find the decision forced upon you. Emergency surgery can still have a good outcome, but so much better for you to be the one to choose the time, the doctor, your destiny.

Meesh
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