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Trying remicade for a second time to avoid surgery

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Posted 8/10/2009 3:59 PM (GMT 0)
Good morning everyone! I have severe Crohn's, mainly in my sigmoid colon and moderate inflammation in my ascending. Since my last post I have been hospitalized yet again and was eventually sent home with Cipro due to the crazy fevers and infection. I have been on nearly every drug on and off the market for Crohn's and was on Remicade in 2007 for about a year. My doctors state that I am going to need to have a Colectomy sooner than later because of my persistent and increasingly debilitating flares. The surgeons plan is to remove the entire colon, but keep the rectum intact. I am trying to look for any means possible to avoid this surgery!

Do you think it's worth trying Remicade again? Has anyone tried or know of anyone that has taken Remicade twice? I am lost with this, my appointment for my first infusion if tomorrow. I believe it's worth trying but for instance if the Remicade does nothing and I would need to go in for surgery, would it effect the surgery besides suppressing the immune system? Is there any chance this could work and help? Is there anything else I should know? I have given myself this plan (try Remicade if it doesn't work then surgery) but am really scared about it.Thank you for listening and if anyone can give me some advice in this I really appreciate it!
Posted 8/10/2009 6:26 PM (GMT 0)
Hi,I had a one off shot of remi in Jan and was operated on a few days later it doesn't interfere with the surgery ( i checked this out beforehand) I went on it again in april but got a reaction on the second infusion in may. my doc is quite happy for me to go on it again if i want to but at the moment im doing ok and just gone on to pentasa. I hope you get away with no surgery  let us know what you decide to do wishing you well Bevx
Posted 8/10/2009 8:08 PM (GMT 0)
Thank you for responding! I really am freaking out about this whole thing. I have spoken to three women around my age that have gone through a similar kind of surgery and it's not easy but has made the thought of surgery and all that comes with it a little easier. I have been struggling with this for so long that all the urgency, pain and other symptoms seem normal. I am ready to move forward...I already have to defer my grad school for a year because I don't think I am well enough to go to work full time and go to school --- had so many changes happening in September but now they are all being pushed back. I am sure I'm not the only one who has these setbacks -- just sucks. My doc isn't hopeful about the Remicade but states she isn't against exhausting every medicinal option before opting for surgery.

Thanks again!
Posted 8/10/2009 8:21 PM (GMT 0)
I had remicade as a last ditch effort to save my colon but 2 weeks later it was removed. I have been off all medicines now for over 2 1/2 years! Just found out that my doctor is answering questions online, maybe you should ask him. His name is Dr. David Rubin, he is one of the top Crohn's and UC GIs in the country.

http://messageboards.ivillage.com/iv-bhgendigesti
Posted 8/10/2009 9:13 PM (GMT 0)
Its pretty odd to see someone to be OFF ALL medications even after surgery, (by the way even that website for 'Dr. Rubin' says that he doesnt let people go without because of long term reproctions.

Also a very easy way to avoid any reaction that a lot of people get when doing this the second time, is they'll give you 60mg the two days before the infusion and hten like 90 or so on THE day, plus benedryl and tylenol...very easy way to avoid problems starting the second time, and thats even for people with so called antibodies.
Posted 8/10/2009 10:46 PM (GMT 0)
I am off all medication, I had crohn's colitis which means my disease was contained to the rectum and the large intestine. Once that was removed I have a a slim chance of having it reoccur since I have no history of Crohn's disease in my small intestine. This is what I was told by my doctors Dr. Kane of the Mayo Clinic (once worked at the University of Chicago) and Dr. Rubin who is my current doctor at University of Chicago. I have also seen Dr. Stephen Hanuaer speak on this topic at the annual CCFA event in Chicago and he too says with Crohn's colitis there is a small chance of it gong to my small bowel. So in my case it is not odd, it is standard practice with Crohn's colitis.

Below is a conclusion written by Dr. Alessandro Fichera a surgeon who works with Dr. Rubin:
CONCLUSIONS: A more aggressive approach should be considered in patients with diffuse and distal Crohn's colitis. Total proctocolectomy in the properly selected patients is associated with low morbidity, lower risk of recurrence, and longer time to recurrence. Patients after total proctocolectomy are more likely to be weaned off all Crohn's-related medications. Long-term rate of permanent fecal diversion is significantly higher in patients with distal disease. http://www.mdconsult.com/das/citation/body/153448154-2/jorg=journal&source=MI&sp=15565284&sid=0/N/15565284/1.html?issn=

Stricturoplasty and resection surgery are a totally different things and after surgery it is common practice to stay on medications because you want to keep people remission after surgery because the chance of recurrence it extremely high. The the recurrence comes back to the same place. Base on what Crohnie_Mel describes it sounds like he has Crohn's colitis. I also participate in a support group where 4 new members have had total colectomies this year ranging in the ages between 26-42 all are off all medications because they had Crohn's colitis.
Posted 8/10/2009 10:59 PM (GMT 0)
I myself have crohns colitis, and I am still having to be on medications, and i have an illistomy even. If I find that post that 'dr. rubin' wrote I will post it about him saying they should stay on maintenance type medications. I have to say that what university a dr works at has not much effect on how good they are or how much 'more' they know. Mine actually did move from severe Crohns Colitis to moderate Crohns of the illieum. Also from what Crohnie_mel says, their leaving the rectum, which is very common, in which case its highly likely to return or turn up in the rectum, if NOT the illieum.
Posted 8/10/2009 11:23 PM (GMT 0)
I'm not disputing what Dr. Rubin wrote because he painting a general overview of surgery for Crohn's disease not Crohn's colitis specific. The post was an answer to JBK1909 who wanted to know when he could stop his Remicade. Since everyone's case is different this conversation in point why not ask a doctor who is available online.

I was just trying to point out that its not ODD to be off all medications and I was a bit taken a back by the use of the word ODD when I know so many who are in my situation. But I also will note that I over looked the part that they are leaving in his rectum when I hear colectomy I usually jump to total protocolectomy which was my bad.

They did leave in my rectum too and I went back on remicade and I had an ostomy. After 2 years the rectum was removed. As a result I have been off all medications since my last surgery which was 2 1/2 yeas ago.

Now on the fun side of things I decided to have a small tatoo of a semi-colon next to my scar, new roman times font size 67, bold. This way I can say I might not have a colon but I have a semi-colon
Posted 8/11/2009 12:32 AM (GMT 0)
While I was at the CCFA they showed a medical study of people who had surgery and remmicade vs those who had surgery and a placebo (same type of surgery btw). The results were staggering patients with surgery/remmicade showed nearly 90% of them showed little to no indication of chrohn's recurring VS. 11% of the patients with surgery/placebo showed little to no indication or crohn's recurring shocked. Food for though Good Luck!!! smilewinkgrin
Posted 8/11/2009 1:01 AM (GMT 0)
Marlowe....I think I came across way to 'strong'. I tried to actually edit it immediatly but my wireless connection timed out. Just was checking to make sure you didnt take it wrong.

I to have no rectum, I had my colon removed in 2 surgeries, my ascending and then the transverse and descending colon, and then my rectum. Ive just honestly never in my life and 7 years of Crohns heard of people not using medication, as a rule of thumb I thought its pretty much standard to still use atleast asacol...pentasa when no colon is present for maintenance.

I really want to say that I always ask people what their going to do when their 90 and they have a wrinkled tattoo of something they liked when they were like 20, but I actually like that idea of a semi-colon, they actually make Crohns disease t-shirts that say semi-colon which I find hilarious, and have to say I'd think about getting that tattoo!
Posted 8/11/2009 9:04 AM (GMT 0)
Folks, I feel that this thread is getting off topic. Mel didn't ask about whether she should be taking medications after surgery; that issue was raised by Marlowe, and now seems to have become the focus of debate and conversation in this thread.

Could we get back to Mel's original concerns, please? She's trying to work out her options, and decide whether it's worth giving Rem another try.

Ivy.
Posted 8/12/2009 2:19 PM (GMT 0)
Hey guys! Thanks for responding! I had my first dose of Remicade yesterday and obviously from all the benadryl I was delirious. I felt alright when I woke up but then 30 minutes later was running for the bathroom. It was almost 2 years ago (wish I kepy a diary back then) so I totallu forgot how long this medication usually takes to kick in. I am aware that even if it does work somewhat, it's still my decision if this biologic will give be a good enough quality of life to stay on it. AllHailDietmar, are you stating from the study you read that staying on Remicade even after a surgery will give me a 90% chance of not having a second surgery? I am glad everyone brought up medication after surgery because I am also deifnitely interested in hearing more about it. After all, if the remicade doesn't work efficiently that's the road I'm headed down.

As far as my case goes this is my last shot at no surgery. I have severe inflammation in the sigmoid colon and some inflammation in the ascending colon. My surgeon stated (when I was last in the hospital) if she operated on me now there would be a 90% shot of reattachment in 3-6 months. I am overwhelmed with the thought of an ostomy bag because I am a 25 year old female with a very hectic life but I know I am lucky for having such high odds for reattachment. My next question is what was it like to have an ostomy bag in the beginning?

Marlowe I love the semi colon tattoo =P also, if you don't mind sharing, I too am diagnosed with Crohn's Colitis and was wondering what went down after your first surgery. How long were you feeling well, and did you take any medications after your first surgery? Did you ever reattach or were you given a permanent ostomy?

Thank you for responding, the more info I get the more helpful it is!
Posted 8/12/2009 8:17 PM (GMT 0)
Remicade can certainly be a wonder drug if it works. Because you have been on Remicade previosly, and stopped, the chances of developing a reaction to this drug is increased because you may have developed antibodies to Remicade. Remicade is the strongest and the most widely used of the biologics, but the effects
tend to wear off after a period of time. If Remicade does not work, you might want to look into Cimzia, another and newer biologic that works for many people who can no longer take Remicade.
TJM
Posted 8/14/2009 5:35 PM (GMT 0)

Hey guys! So I have been on Remicade since Tuesday and this morning I had my first solid BM in I can't even remember how long! It's funny only my fellow crohnies would understand the value in that but I just wanted to share! Hopefully this continues and hope everyone has a great weekend!

Posted 8/15/2009 7:51 AM (GMT 0)
I was going to jump in with the Cimzia, too.
Posted 8/15/2009 12:05 PM (GMT 0)
Hi mel, good to see you are doing ok, its funny how normal people just take going for a BM in their stride and us crohnie's get a formed BM  and we are like whey hey!!! a formed BM we obviously don't take it for granted! take care  Bev x smilewinkgrin

 

Post Edited By Moderator (Nanners) : 8/15/2009 7:50:34 AM (GMT-6)

Posted 8/16/2009 2:18 PM (GMT 0)
I could have written this exact post myself. My doctor wants me to have a piece of my intestines removed due to inflamation and wants to reattach the two healthy pieces together. I am currently on Cimzia and started in April. I felt great at first, but notice the effects wearing off earlier and earlier each time I get my injections. Within one week of my injection this month I was in severe abdominal pain and throwing up. I can't eat or sleep.

I want to avoid surgery because I have a small child at home and don't want to be in the hospital for a long period of time. But my quality of life has gone down significantly... I'm in so muchpain that it is hard to play with my young daughter.

I was on Remicade in 2006 and went off it when I got pregnant. My pregnancy threw me in a complete remission and I was not on any meds until my daughter was a year and a half. I was doing well on the remicade before and part of me wants to try to get back on the remicade before resulting to surgery. My husband and I eventually want to have another child, and we are afraid any scar tissue from surgery could result in problems getting pregnant in the future.

However, with the pain that I'm currently in, I don't know if I can wait on the surgery. I feel awful and cry a lot due to the pain.

 

Posted 8/16/2009 5:10 PM (GMT 0)
Hi, Mel. How wonderful that the Remicade is working for you! :-)

I went off Remicade early 2007 and back on in Nov '08 while in the hospital for a bad flare. I was so lucky that it worked, since the complications 'elandumpling' mentioned were a real possibility.

The Remicade was working really well, but my [new] husband's insurance doesn't pay for it the way my single-mom coverage did - I can't afford it anymore :-/

Comparing Humira and Cimzia now - not liking what I've heard about the injections being painful, though :-(


Continued good health to you, Melissa,

Debi
Posted 8/16/2009 6:01 PM (GMT 0)
Sick and Tired,

I heard a lot about how the Cimzia injections were painful too. It really had me nervous. You get two injections, one is in the thigh and one is in the stomach. However, I did not like the idea of a needle in my stomach so I get both done in the thigh. The nurse said that would be fine.

I can assure you that, at least for me, the injections were not that bad. If the nurse sticks me in the fattiest part of my thigh, I don't even feel it. Once in a while, I might feel it a little bit, but the pain lasts about a half a second and then it is done. I've stubbed my toe and felt more pain than the cimzia needles.

And I'm not tough when it comes to needles at all!  Trust me, the pain is not that bad.

I hope Cimzia works for you if you decide to try it.

:)

Posted 8/17/2009 8:22 PM (GMT 0)
Hey, Bachi...

Thanks so much for sharing your experience with Cimzia (even if we're getting a little off-topic :-). It makes all the difference to hear a real-life testimonial about something serious when we need to consider it. I am terrified of needles, which is kinda weird considering how many times I've been poked over the years :-/

It's only a matter of time before my surgery is scheduled, as the doctor calls it 'inevitable'. O, well. We can only fight so much before accepting the surgery option, I suppose.

At the risk of stating the obvious: Man, I hate having Crohn's!

Thanks for the well-wishes... Hope your Crohn's journey soon knows less pain and minimal disruption to your life,

Debi (Sick_and_Tired)
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