My girlfriend has had chrones disease since she was 17, and it has taken it's toll on her. She is forty now, has lost all her hair, is addicted to the morphine that she has been taking every 4 hours. Right now she is in the hospital, I have been going to see her every night. The doctors have told her that the chrones has spread and it does not look good at all, they starting talking about giving her a bag, but now I just got home from the hospital, tonight the doctor was in talking to her, and it looks like she is not going to get the operation, that they want to try her on, this remicad . I looked it up on the net and the side effects from this medicine is insane. Things like cancer, lupus symptoms, prone to infections that can kill. It breaks my heart to see her in so much pain, her arms are a bruised bloody mess, from all the needles. The nurses try to put in a needle but her veins are so bad, they have a hard time finding a vein that is not weak/ thin . The nurses started looking at the veins in her feet as they are running out of places to put the iv needle. Her body is so swollen she doesn't even look like her anymore. I just wish that she could get better and have a life, it makes me so mad. I hate this disease. Does anyone on the board know some one who has chrones disease ( disease of the bowels)?

By Bea on Wednesday, February 23, 2005 - 12:35 am:

I have a 12 year old niece with it.

By Emily7 on Wednesday, February 23, 2005 - 12:53 am:

A acquaintance of mine has Chrones, the remicaid has really helped her, thus far no side affects. I will keep your friend in my thoughts.

By Karen~moderator on Wednesday, February 23, 2005 - 07:59 am:

I have a friend (no longer a close friend) who has Crohns, and the father of another friend had it. I would say give the Remicaid a shot. My friend was diagnosed with it about 15 years ago, and she is doing wonderfully on medications, still working, still very active.

As for the morphine, everyone should be aware of the difference between addiction and physical dependence. Just because someone takes controlled pain medications for a long period of time doesn't make them addicts. They DO become physically dependent on the meds and because of that, doses need to be increased over time. And if/when they are ready to stop taking the meds, they have to carefully be weaned off of them, so in that way, it is similar to addiction.

Many people are on long term meds like that for a number of reasons - disease or injuries, etc. - just like your friend; but it doesn't make them addicts. In fact, the people who are *recreational* drug users are the ones who have made it hard for people with GENUINE needs (like your friend) to obtain them, and due to those types of people, there is a tremendous amount of misunderstanding and misinformation in general surrounding the use of those meds.

Just wanted to throw that in, please don't look at your friend as an addict. If she has truly been on morphine for physical pain, and no other reason, she is physically dependent, not addicted. There IS a difference.

By Trina~moderator on Wednesday, February 23, 2005 - 08:03 am:

I know of a little boy in Kindergarten who has it. He's on a very strict diet and appears to be living a normal life. I don't know if he's on meds or not. Sorry, I wasn't much help. I hope your friend is doing better soon!

Did a quick search:
Crohn's Disease

By Kittycat_26 on Wednesday, February 23, 2005 - 08:04 am:

The question to ask and only your friend can answer this is do the side effects of the Remicad weigh greater or less than the good it could do. If the side effects are no greater (for her) than the pain and suffering she is in now, she will try the drug.

I have a 27 year old sister who has rheumatoid arthritis. She has taken a drug, Methatrexate, for almost 5 years now. This is an old cancer drug. Over a long time period, it could destroy her lungs. For her though, it is the only thing that allows her the relief and is well worth the risk.

It's not an easy choice and my heart goes out to her.

By Debbie on Wednesday, February 23, 2005 - 08:33 am:

I am so sorry to hear about your friend. It must be really rough to see her like this.

My 9 yr. old neighbor has it. He also is on a strict diet. Besides being small for his age, he is doing great. He does have flare ups every once in awhile. However, overall he is healthy and very active in sports and other activities.

By Mrse on Wednesday, February 23, 2005 - 11:42 am:

Thanks for the reply's. I really don't think of my friend as an addict, she is the one who told me the other day that she was addicted to the pain med's. I know what you mean though , it is like if someone is calling you an addict , it is kind of a dirty thing, like you brought it on by your own will, not because you had to take the med's for pain relief. It is a good point, never thought of it that way before. Last night I clicked on the link, on the advertizment above, and it came up with the molocure research inc. I have run off the pages and I am going to show her theses today. The one thing about it, from what they say is that you don't have to stop treatment of the other drugs that the doc gave you, even though some in the testimonal's did just that. My friend has not been functioning for years, she has bascially lived in her pj's her whole adult life she is 40 now. The only time she went into remission was when she was pregnant with her two kids. If anyone has the time, take a look at the web site and see what you think, part of me thinks to good to be true. I want to take her the pages right now, but have to wait untill later in the day as I have a work meeting to go to. The one thing with chrones is some people can live with it for years with a flare up here and their, but like my friend it is constant pain, and the med's she takes for the chrones have weakend her heart, kidneys are almost at the end, her whole body is going down hill from the side effects from the med's/disease.

By Mrse on Wednesday, February 23, 2005 - 11:44 am:

Hi I just looked at the advertizement, it looked like it changed, here is the address to the site
if anyone is interested.
www.molocure.com

By Bellajoe on Wednesday, February 23, 2005 - 02:11 pm:

I have Crohn's disease. Thank God that i don't have it as badly as your friend does and i hope i never get that bad. I hope she gets out of the hospital soon and i hope they figure out how to control it for her.

By Mrse on Thursday, February 24, 2005 - 01:34 am:

Bellajoe, I hope I did not scare you with all my friends problems, it is just that I am so worried about her , and she just isn't getting any better. I took the papers in to her this afternoon, and she said that she would show her doctor, and her reaction to the cost was almost like well might as well forget that. I told her if I was in her condition I would cut back some where else and make sure I got the money for a treatment that may help. Even though she said she would show her doctor I got the impression that she did not even want to bother with it, which kind of hurt my feelings, you know the old saying you can lead a horse to water but you can't make him drink. The cost is 179.00 for one month, but as you get better the bottle of pills will last longer like two months.

By Bellajoe on Thursday, February 24, 2005 - 07:47 am:

No Mrse, you didn't scare me. I know how bad Crohn's can get, but thanks for being concerned like that.
I hope your friend looks into the option you found. Nothing is more important that her health.

By Mrse on Thursday, February 24, 2005 - 03:47 pm:

she just lelf a message on my machine, that she has a present for me!! what a brat, I should be bringing her presents. Most likley because her dd stayed here, for a few days so she could visit her in the hospital.

By Kay on Friday, February 25, 2005 - 09:15 pm:

My youngest dd was diagnosed with Crohn's 4 years ago at the age of 10. At the time she lost 15 pounds and became extremely anemic. She was put on prednisone,which stabilized her, and then on Asacol. Today, she is 14 and in official remission, and the specialist has taken her off medication.

Remicade was a possibility at the time, but we didn't have to go to that option. The side effects can be scary, as can surgery, but you have to weigh it against the alternative.

I wish her all the best - watching my little girl suffer with it, my heart goes out to all who have to deal with this.

By Mrse on Tuesday, March 8, 2005 - 12:54 am:

Hi Kay sorry I lost track of time and did not see your response untill now. I am glad to hear that your daughter is in remission, the only time my friend was in remmission was when she was pregnant. My friend is still in the hospital, it is becoming very frustrating for her as she has been moved from her room 5 times since being in the hospital. She is waiting for a bed in victoria b.c to get on the remicade right now, I just wish the would start it, and hopefully she would get better.

By Feona on Tuesday, March 8, 2005 - 05:51 am:

I knew someone who was forty on a strict diet who was fine.

No wheat at all. I don't know what else... I thought this disease was

a horrible wheat allergy that really effected the person terrible if they don't remove wheat from the diet. (Probably anything wheat like too)

By Jann on Tuesday, March 8, 2005 - 06:24 am:

Celiac disease can be cause by a wheat or gluten alllergy. Usually the only way to control is by eliminating all wheat and gluten products from their diet.

By Kay on Tuesday, March 8, 2005 - 03:32 pm:

Amy's still a little lactose-intolerant, and if she doesn't take Lactaid when she wants ice cream then she may cramp a bit, but it's something she has to learn to live with. I'm just living with crossed fingers at this point.

Good luck to your friend - how long is it supposed to take her to get the Remicade? I just can't imagine if I were told we would have to wait to have a test or treatment done on Amy - of course, my business pays large insurance premiums for the privilege, but I wouldn't trade it for the world. The treatment she received as quickly as she did probably saved her life.

By Frasersmama on Tuesday, March 8, 2005 - 06:02 pm:

I am an RN that works on a GI ward and look after lots of Crohn's pts, either getting medical treatment or surgery. I have administered the drug Remicade, and yes, the list of possible side effects is daunting. Your friend must consider them; however, the list is an exhaustive list of every possibility, and in all likelihood she will probably not experience a lot of them. I have seen people have remarkable improvements with this med and would strongly urge your friend to consider it (and discuss it at length with physician AND pharmacist) before undergoing surgery. The possible side effects/adverse events of surgery are also very serious. I wish your friend all the best and hope that something can be done to improve her quality of life. (PS: Just a note that I am writing this from a Canadian perspective and have not included any discussion on cost since it is not something we have to pay for here).