I need advice/Remicade- anyone on this??

Hello there

I just joined this site and so far it looks great!  I have ulcerative colitis, and I was wondering if anyone is on Remicade?  This medication is given through injections.  I am on my 3rd dose, and so far it has not been working that well for me.  I was told by my GI doctor that it takes time, but I would think by now it would be making some kind of difference.  How long have you been on it? And how does it work for you?

I am currently in a bad flare up.  I just had a colonoscopy on the 31st and it revealed no changes from a year ago, I am not any better and not any worse.  I feel like I am worse though. I have quite a few bowel movements a day, like 5 to 6! 

I have just started a new food journal.  I write down everything I eat, as well as when my bm's are.  I currently stay away from nuts, seeds, popcorn, salad/lettuce, raw veggies, fried foods, I watch and limit my dairy intake, as well as watch my sugar intake. 

Is there anything else anybody would recomend to stay away from?? What foods give/gave you trouble during a flare up? I have been dealing with this disease for four years and still have not mastered what foods truly aggravate me.  It seems like it is everything lately.   I would really appreciate some feedback.  Thank you for taking the time to read this and write back!! 

Oh yes I do mean Infusions!! I was saying it was through injections but that is the wrong terminology. I do get Remicade through infusions, and I am on my 3rd dose. Sorry about that, hey it's getting late in the evening and I'm tired! lol. =)

Hi there! I've had four infusions of Remicade and have yet to see a change. I guess the main improvement is that I have been able to reduce my one in a half year stint of 40mg prednisone to 20mg...but I'm still in a bad flare. My GI told me many people see a change after the 3rd infusion, so I was hopefull...but nope...nothing. People on here have stated that they have seen a change after the fifth treatment. I'm scheduled for my fifth infusion January 27th. We'll see how it goes. Now, FYI I've had terrible experiences with my immune system from being on such a high dose of prednisone for so long...then adding the Remicade really gave my system a beating. So, my family and I are meeting with a surgeon just prior to my scheduled infusion that same day. I've had pancolitis for almost 2 years and I've suffered almost the entire time. I'm not okay with this, and once you've hit the stage of Remicade there are fewer options to help keep it under control. This disease has really become a pain in the butt...no pun attended...and I'm just tired of being tired. : )

As for the foods you mentioned everything I do too...I stay away from fiber as well. No eggs, beans, red meat, etc. When I'm strict on my healthy eating I eat a lot of rice cereal with rice milk. It gets tiring. However, when I'm really down and out I'll do anything. I'm almost to that point, as I've been pretty sick for about a week now. Though I'm in a constant flare I have some days that are much worse than others. For instance I did not sleep much at all last night, for I was constantly running to the bathroom. It was nice though b/c my son slept through the night, so he was not affected by me being sick. I absolutely hate it when he needs me to walk him back to sleep or give him a bottle and I cannot fully follow through b/c I have to run to the bathroom. Which, is another reason we're opting for surgery. We want more children and risking a pregnancy with the UC again is kind of spooky...especially with the complications we are already experiencing. So, we've made up our mind, it's just 'when' the surgery will happen is our current question. I've joined j-pouch.org and found such amazing support, as you will here on this site as well. I just joined recently and am already so comforted.

I'm glad you found this site and are asking questions! : ) I'm going to start a topic regarding Motherhood and UC...as I know we all experience basic dilemmas regarding being a mommy in general...but when we add UC into the mix it gets a little chaotic!

Have a wonderful day!!!

: ) Robin

Hi Meredith. It's been three infusions for me as well. So far it has kicked in each time for me after around 4 days, but gradually beginning then, giving me consistently formed stool and a reduction in pain, for a couple of weeks and then wearing off with no effect. I am seriously thinking about surgery now and have gone back to frequenting the jpouch.org forum, but I have to admit I get scared off by the posts there which seem to be 80% or so of people having never-ending UC-flare-like symptoms with their pouches... but they are certainly a terrific bunch and in the end I fully expect to become a poucher in the first half of this new year. Will first see if an increase in Remi dosage is warranted and "does the trick." Also I am thinking about trying TSO (pig whipworm) again, because, like Remi, they helped me somewhat and so i wonder if mixing them in with my Remi might provide a synergy. Given that I can't tolerate any 5ASA drugs I am looking for some sort of synergy.

Well, it seems like Remicade works for some people and not for others. I am hoping that it kicks for me in after the next dose later this month. With the Remicade weakening the immune system I have had my flu shot as well as make sure I am taking vitamins. Heck, I do anyway because I am an elementary teacher, and I get tons of germs from the kids. So it was important to me to get my flu shot.
I have been really cutting down what I eat drastically the last few days. I need my colon to rest and recover.
I am very hesitant about getting the pouch surgery. It was suggested to me a while back when I had the worst flare up of my life, in 2006. My GI then (I have since moved and have a new one) said I might want to look into it if I am in a constant battle like I was in before. But now it seems like I am hearing a lot of problems with the pouch. Well any more comments would be appreciated. Thanks!

Well, my statement about how I get a bit scared when I look at jpouch.org wasn't meant to scare you off the pouch option. As Suebear and others with successful j-pouches have pointed out here, the success and satisfaction rate of those who get j-pouches is much, much higher than what you'd think looking at that forum, as most of the successful people on that forum never even join or quickly disappear. The forum is great for questions but not very good to gage an idea of what is normal, I suspect. I hope you start to notice some effect from the Remi soon. If you have no side effects, perhaps they will increase your dosage or the frequency, at least initially (beyond the "priming" effect even ) to induce remission. In my case I notice some effect but not a very strong one so far. I am very comfortable now with my decision to let remicade make or break my decision on a jpouch. I haven't quite defined in my mind what "success" will be i..e how many months to a full and pred-free remission, but as long as the overall trend is solid I am content to give Remicade time. If I can't get off pred, or need pred again for a flare in any dosage assuming I do get off on Remi, or can't keep tapering to zero, or merely if I reflare again on remi long term, I will go for surgery asap without hesitation.  One thing I am doing even as I hold off on surgery is consult with surgeons.... so as to be "ready" at much shorter notice if and when the time comes.

Hi, wanted to jump in here with my experience with Remi. I was in a TREMENDOUS flare when they started me on remi. I was in the hospital for twelve days, so malnourished I was on TPN for four, going about 30 times a day, almost ALL blood. My entire colon was so inflamed they didn't even scope half way for fear of perforating it. I noticed a difference within one day of my first infusion. I left the hospital six days later and was down to less than 10 almost formed bm's with much less bleeding then. After my second infusion a week or so later I didn't notice much blood at all and was down to 5 or less bm's per day. I had a total of three infusions and then I got my first menses cycle since I had become sick. All my bloody bm issues started up all over again. At that point I was having some side effects from the remi including, very stiff achy joints, significant hair loss, petechaie rash, facial rash, and vision changes. I decided that the affects I was having were too bad to warrant any more infusions.

I have kept a food diary for about four months now and I have tried cutting out sugar and carbs and different things I've read about, even strict scd for a month or so. I have found absolutely no correllation with my diet, my issues all revolve around my female cycle. Actually, the past two weeks I have ate everything under the sun and have been the best I have been in a very long time. At one point I stopped the bc pill for about five months thinking that may help but now restarted it.

I read about a local study on LDN (low dose naltrexone) at Penn State Hershey and looked into that but was afraid I would end up with the placebo and couldn't take that chance. My family doc prescribed it for me and I added a few supplements. I have been on ldn full dose for about seven weeks now and am doing extremely well. I feel really good on it and other than the first week or so I sleep better than ever. LDN, JUST LIKE ANY OTHER DRUG, DOES NOT WORK FOR EVERYONE.  

The first study at PSH showed two-thirds go into total remission, I am hoping I am in that two-thirds. I am currently taking a daily probiotic, omega 3, down to 5mg pred, digestive enzymes with meals, and an herbal supplement called intestinal soother. I currently average 2 bm's with very little noticeable blood. I'm keeping my fingers crossed for next week when I get my P again.

This is just another option I thought you may want to considder before resorting to surgery.

Good luck in whatever you decide.

Take care,

Miss

I started LDN a month or so after my last remi infusion, they actually recommend about 50 days. You can be on low doses of pred while on LDN. When I started LDN and the remi wasn't quite out of my system I also went on 20 mg of pred and taperring, down to 5mg now. I wish I would have know about ldn before they initially put me on asacol, I just got tremendously worse from the day I started that until I ended up going to the ER. I kept calling the gastro telling them I was worse and they apparently didn't take me seriously so I went to the hospital on my own. The doc in the ER couldn't believe they didn't do something at the gastro's because my bloodwork was so screwed up she was going to give me a transfusion. I think I was having a reaction or something to the asacol and that's why I got so bad. Anyway, I'm on LDN now and things are going pretty good, hoping they continue. It's just like anything else, what works for one doesn't work for all and what works for a while doesn't always work forever. I'm just hoping my current status continues.

Take care,

Miss