[dianab]

My daughter has been taking IV infusions of the drug Remicaid, sorry if that spelling is incorrect. She has been doing it every 12 weeks for the past year and a half. This has kept infections away and kept her from being hospitalized and hasn't had to have any surgerys so far. She also takes an oral medication about 8 times a day plus steroids. Has anyone else been through this hell of Khron's that I can talk with? I appreciate it.

DIANA

[sput]

hi diana, i have crohn's diease. was diagnosed 2 years ago. i have taken remi, zelnorm, asacol, prednisone and hated every one of them. right now i take nothing, and pay for it! as i have bowel incontinence. i stopped the asacol, 16 pills a day, way too much! im sorry your daughter has this, the one good thing is i havent had a flare up for 2 years. i have consulted another gastro. dr. i have to drive 75 miles to get there but thats ok. 2nd opinions are ok. talk w/her doc. about all the pills. how long has she had it and how is she.

kathy

[dianab]

hi Kathy, thanks for answering. It was the only answer I got. She takes about 12 oral pills a day I believe. She has done very well since she started the remicaid infusions. She still needs to be near a bathroom at all times, just in case though. It gets worse when the Remicaid infusion starts to wear off after about 7 weeks. It is a tough disease for sure. She recently applied for social security disability and we are hoping it comes through for her. She definitely can't work with all the doctors appointments and the main reason that she has to run to the bathroom all the time. Sometimes the pills just come out whole so they aren't doing anything for her. Write back and God Bless, by the way how old are you? She was about 27 when she got this. She is 30 now. thanks Diana

DIANA

[forestfaerie]

Diana.. I have crohns and I have found the only thing to help is diet. Have your daughter try not eating salads, pop, sugar, any artificial flavors/preservatives/additives. See if this improves her condition. I tried drugs for years with no improvement and with someone elses advice i changed food quality and now i am able to control my crohns. If i mess up then i pay for it. I take asacol only when i have flare ups... kathy, what did you not like about asacol?

[annericelover]

I am coming close to completing a years worth of this Remcade treatment and I am feeling great. I just found out that my Anemia is gone and now I can begin to work out and built up my body stronger.
I'm 25 years old and have had Crohn's since I was 10, If you would like to talk than contact me and I will give yu my email.

[ShanonSaylor]

I have been on several different medications for crohn's. I am now on entocort EC and Pentasa. My doctor just did a colonoscopy on me and wants to start me on Remicaid when the biopsy comes back. (if it comes back the way he thinks it will). I've already had two surgeries... I have 2 feet gone from my small intestine. Thank goodness for no fistulas or polyps like I used to get. But I was inflammed this past time as for the reason for the Remicaid. Can you tell me more about the experience with this drug?

[Kravis]

I am 46 years old and was diagnosed with Crohn's at age 31, (was sick many years before the diagnosis.) I have been hospitalized two times in serious condition - taken every mixture of drugs under the sun, have watched my weight balloon to 200 pounds and plummet to 110. My last chance at a 'normal' life was Remicaid. I started the IV treatments about 5 years ago. I can't believe the difference! There is very little left of my sickly existence of my previous life. I do worry some times about maybe long term effects from the drug but at least I have my life now. I no longer take any other meds except for Tylenol for joint/muscle pain caused from the disease and the occasional anti-diarrheal medication. I have NEVER missed a Remicaid treatment, which my doctor said is key and I think a positive attitude helps. I hope your daughter is doing well.

[Robert_325]

Originally Posted by Kravis

I am 46 years old and was diagnosed with Crohn's at age 31, (was sick many years before the diagnosis.) I have been hospitalized two times in serious condition - taken every mixture of drugs under the sun, have watched my weight balloon to 200 pounds and plummet to 110. My last chance at a 'normal' life was Remicaid. I started the IV treatments about 5 years ago. I can't believe the difference! There is very little left of my sickly existence of my previous life. I do worry some times about maybe long term effects from the drug but at least I have my life now. I no longer take any other meds except for Tylenol for joint/muscle pain caused from the disease and the occasional anti-diarrheal medication. I have NEVER missed a Remicaid treatment, which my doctor said is key and I think a positive attitude helps. I hope your daughter is doing well.

Hi Kravis .... that is very cool news. I am in my 50s with about ten years on you and have had autoimmune problems for a long time ... RA, Raynaud's Phenomenon and APS (Antiphospholipid Syndrome). All autoimmune diseases that are the illnesses which have required this class of meds from the rheumatologist.

I can't say that I had the luck you describe with any of the infusion or just injected rheumy medications. I have had some problems in the past with infections from the injections due to my Raynaud's illness which causes severe blood circulation problems.

My rheumy took me off injections altogether about two years ago. The infections at the injection sites are always a risk factor for all of these injectable medications. So today I take methotrexate orally when I have to which isn't as necessary as it used to be. And methotrexate likewise has potential side effects. All meds that are so serious in nature have positives and negatives. I have been blessed in that respect. I'm sorry you can only take Remicaid but glad you have done so well with it. Your up and down experiences should be a reminder to only place so much of your confidence on medication info as we are all different and all react differently if even to a small degree to these serious meds. We have to pay attention.

I really have a lot of respect for my rheumatologist. He has done so much for me when I TRULY wondered if I would even survive my challenges. And that isn't an exaggeration at all. He knew all along that I was strung out on RX pain meds. But his main concern was ALWAYS helping me, not judging me. After a while I actually thought I might die. This is one reason why I always tell people that one drug might do very little or nothing for one person, might even have adverse affects on one person and then turn around and seem to help the very next person big time. Science is often hard to truly comprehend at least for me. Just do the best that I can.

Congratulations on having so much success. I only pray that you will continue this experience and will be able to share your longterm success with us when the time is right. I wish you continued good luck and may God bless.

[nursesarah]

hello I am a crohn's survivor. I have had 2 flare ups but do not take any routine medication. my first flare was when I was diagnosed. I was sick for years before I was actually diagnosed though. I do follow the Makers Diet by Jordan Rubin and that has helped immensly. I did follow the Dr.'s order after I got out of the hospital as far as my antibiotics and steroids but once they were done I went back to my diet and am doing well. My last flare up was last month and it was due to my not eating right, and family stress that was avoidable but I chose not to avoid it. I watch what I put into my body and have had great success with that. Jordan's book is great in that it tell you what foods to avoid and why. My GI doc is very angry with me because he wanted to start the remicade when I was in the hosp last time and I told him no that I did not want to go that route, he then told me the only other alternative was surgery and I told him that was not an option either. The diet is not strict and is easy to follow, not so much a diet but a change of life and lifestyle. It has been worth every change I have made in my eating habits to be healthy.
good luck with this and I hope your daughter is willing to try.

[Laura7783]

I was diagnosed in 2005, but I was sick for years before that. I also tried changing my diet. I cut out all sugar, preservatives, etc., and I noticed no change in my flares. Now, I just eat foods I consider to be "safe" that normally cause me no additional problems. The main foods that I cut out are any type that is really spicy or greasy and vegetables high in fiber.

I have been on several sundry 5ASAs, which work for a few months and then I have another flare. I was also on prednisone for a couple of months. The prednisone stopped the bleeding and diarrhea, but made me equally sick in other ways. About half my hair fell out, my heart rate was through the roof, I wanted to eat everything, and I sweated profusely and felt the need to rest after the slightest exertion.

My doctor told me that he would probably put me on Remicade if I had another flare.