Struggling with Remicade Decision

My mother has Crohn's and I can say that I believe Remicade is what has kept her out of the hospital and prevented more surgeries... She was approved for Remicade when it was very first approved and she has used it successfully for years... Prior to remicade she had six inches of her small intestines removed and was always in pain. I remember her never eating cuz she was afraid she wouldn't make it to the bathroom. There were times when she would not eat the entire day, it was so sad. She was in and out of the hospital a lot and the medications just never seemed to work. She gained a lot of weight on the steroids and they dind't really help. But when she started Remicade, I really believe it changed her life. She used it successfully a number of times, and while it is different for everyone, she has been in remission now for over five years...... It's not perfect, but she has not had a flare up. She swears by it... In every medicine the benefits should out weigh the risks. There are always side effects and always things that could happen. It's all very scary. I'm currently on prednisone and pergnant and very scared I might harm the baby. But I believe it is better to get treatment than risk something worse. Talk to your doctor about all the possible side effects. Chances are if they are prescribing it, they believe it is the best choice for your daughter.

But this is only my opinion. LIke I said I don't know. I go to the GI for the first time on Wed to see what is wrong with me...

Good luck to you and I wish you the best!

Yes she is. It hasn't done anything for her, it seems. Now we are taking it out of the capsule because she is on Prevacid.

I realized today, during my Remicade infusion, that I have been on it since 2002.
No problems to report, no side affect, only lots of symptom free days.

I understand your concern though, it is a strong medication, and it really calls for a lot of thought and consideration before going on it, especially since you say she is doing well.

I guess one way you could look at it is a preemptive strike. Some Crohn's patients have a flare up, then it never resurfaces. Some of use get occasional flare ups, and then there are those that constantly seem to be in flare. Since it would be hard to know which way it would go for your daughter, you could put her on Remicade in hopes that it prevents any issues down the road. Even just having one flare could cause a lot of issues for someone of young age. Not just the disease, but missing school, social events, family time, etc.

Also, Remicade is only one of a number of drugs in this family. Even if she does eventually build up an immunity or develops a reaction, there are several more similar drugs that could be tried.

Remicade is the only drug of this family I have ever been on, but I have discussed my options with the GI. I know that I could get resistant to the benefits of this drug, if that does happen, he says I can try one of the others. Knock on wood, I've been able to avoid having a resection, and hopefully it can stay that way.

As others have said, all drugs have side affects, even Pentasa. Make sure you weigh all the pros and cons, and don't focus only on the cons.

I hope she does well whichever treatment you choose.

Thank you all. the nice thing is that her GI called and wants to do another upper scope this Friday to make sure the Candida has disappeared. I think it will at least let us see if her inflammation is still there now that we have had a few weeks of her stricture ballooned to the desired size. I go back and forth with this, but then I always listen to the webinars with well known GI docs on CCFA.org and hear it is best to be aggressive with children because it reduces the risk of surgery. So for some reason, I hear this at the opportune time I suppose. (By the way, CCFA has a new one up if you are interested in listening.) It is probably the best decision ironically for her long term health. It definitely helps to hear those who have had long term success. My hope is that she can do well with this for awhile and there will be some other med that will have less side effects and be more effective. That might be the LDN studies done by Smith at Penn State. She is doing a Phase II study right now with children. It is what we all wish and pray for! Best of luck to you Wolfie40. It sounds like you need some relief.

I guess I am worried about things that are posted here, lupus symptoms, lymphoma, and such. I feel much better after really assessing the statistical risks and listening to the webcast this afternoon. Maybe it is also the fact that we are going to the most aggressive treatment and there isn't much else we can do after that if it doesn't work. I am concerned about the long term use of Remicade. However, if I continue to move up the drug chain and she doesn't have any response to those then we have wasted valuable time trying to get her into remission. See, I could argue with myself all evening :D

Well, I suppose it's possible EMom. Where her Crohn's is located is so different than most, her symptoms are not typical of Crohn's, more like GERD. We will find out if she has inflammation on Friday with the scope. She has had spaghetti for the first time in almost a year and had no problems. (It is her favorite thing to eat and it was tough for her to go without.) We thought we would try it last night to see how she would do and she has had no problems. We have kept her on digestive enzymes, fish oil, and probiotics. I guess if she is showing signs of remission on the scope, that makes things much more interesting.

Since her stomach wasn't emptying before the complete dilation, its possible that she had inflammation due to the food sitting there and irritating things. Her ulcers are healed too so that has taken pain away.

My daughter doesn't seem to want to be heavily involved in any of the decisions right now. I think there are two things going on here. One is that since she is young (14) she is in a bit of denial about how this could play out. Once in awhile she asks questions and seems to want to know more. Other times she doesn't want to discuss it. She gets irritated when we talk about foods she probably needs to avoid or eat in moderation. She is a very responsible teen, but not so much when it comes to food. The other thing that might be contributing to her passive behavior is that she is not in any pain and doesn't have the typical diarrhea that comes with a flare.

As far as her ped. GI, I am not all too convinced he is confident in treating this, and it may just be my issue not his. He has never had a case of Crohn's like hers. There is another GI in the practice that did the dilation who says he has seen and dealt with this type of Crohn's but there doesn't seem to be much communication between the two. Her ped. GI was ready to have surgery instead of doing the dilation. The other one felt we should try the dilation first. So there are some trust issues there.

Hi my dd was told she has Crohns just on the 5th of June we spent 4 days in childrens hopital. She is only 9. This is so sad to see so many children have this I had no idea. And yes reading the internet is so scary. I can not sleep tonight because I go through my worry times.. She was started on prednislone and Prevacid with a calcium carb and Multivitiam. I too am worried about remicade. Her GI doc wants her to get started as soon as possible. So of course I went on line and started reading about remicade and now am freaked out about it. She is scheduled already to go next week. He wants to be agressive with it. I see, but ... She doesn't handle pain well at all and really never has. She hated the IV in the hospital. The Treatment is going to be hard on her and me. knowing that there is other people out there going through this helps. Does anyone else just sit and cry for your child feel like such a baby. So hard to make the decisions on what would be the best. anyways thanks to everyone posting it may not feel like we are alone here.

We had the scope done this morning and unfortunately the inflammation is still there and possibly worse. The dilation still is holding up though. Again, after much research and listening to webcasts from prominent GI doctors, we have decided to go ahead with the Remicade next Friday. I don't want to wade through all the other options and still be where we are with more damage. Our goal is prevent surgery in the near future and I think this probably the only way to do so. Our other concern is her growth. This is a crucial age (as with any adolescent) and I want to make sure she is getting the nutrients she needs. I have asked for a full work up on what she is lacking in that area. This will be done next week also. It's time to take the dive and move on. No more second guessing now!

inawhirlwind, my prayers go out to you. Like all parents of a child with a disease and those here who have been diagnosed with Crohn's, you will go through that mental process. Surprisingly children adjust well and learn how to deal with things. They just need a good support system and information that is age appropriate. As long as keep things in perspective when searching the internet, you can get very good information. Someone told me (it might have been on this forum) only spend 45 min a day searching for the information online. Otherwise you become overwhelmed. This forum is a good source, but you have to remember most people who post are going through a difficult time. There are many people who don't post on the internet who are in remission. Welcome!

Hi everyone.. I wanted you all to know my dd who is 9 years old has started her remicade treatment. On the 25th of June. We so far have no side effects and she is almost out of her prednislone and prevacid. So we will see how it goes with that runs out. She has had the Constipation part not the other through the whole thing. She has gotten better, but I also added metamucil no taste or grit kind to her diet. It has helped her.. I haven't tried some of the other things for her yet. Have increased her fish intake and taken her off of Milk. Only Lactaid Milk.

Anyways just an update on her.

I am 62 years old and was diagnosed with U/C 6years ago, I was in remission from 2006 until Jan 2009, for the last 7 months I have had constant Diarreah (cant spell that word) without any blood. My bathroom visits vary from 3-10 times a day. I do not get many cramps but have lost about 30lbs since Jan 2009.
The only medication I am on is ASACOL that I take two tablets( 800 mg each) 3 times a day. I also take 4 Calcium tablets with vitimin D every day that has dramatically improved my bone density.
I have found foods with spice in ( that I love) really agrivates my condition and my bathroom visits excualate!
I also found Beer to have a similar effect. as well as Bread, oats, and wheat products
My Doctor wants me to start on Remicade next week and I am concerned. I read some of the comments on this subject, and I do not feel I am ill enough? or am I in denial?