Help for this hellish disease

by Amanda Martin
(California)

Hi,
My name is Amanda and I am 28 yrs old and have been living with Crohn's for 5 years. I was diagnosed with it right after the death of my mother in 2003. Cramping, diarreah, vomiting, rapid weight loss etc. The list goes on. I went to our family Dr, and he said I had the flu. When I wasnt getting any better, we went to see the GI. Here came the bad news.....Crohn's. I was prescribed Asacol, and it didnt do a damn thing. One day after my husband had left for work, my sister had come by and found me passed out in the tub. I had been in so much pain, and so weak, I thought a hot bath would help. I was rushed to ER, and they found I was bleeding inside. So,with a blood trasnfusion, flagyl, prednisone, cipro, metronizadole, 6-MP, dilaudid and phenergan I was on the road to remission. This past September, right after our son's 7th birthday, I was in pain again. Back to the ER(been hospitilized 6 times for this disease)....I had my gallbladder removed. Since then, I have gone down hill. Weight loss, fatigue, vomiting, constant *hitting, horrible pain is my new lifestyle. My GI took me off the prednisone(the drug you love to hate), and I am now on Imuran, Entocort, Asacol, and I am starting Remicade next month. I can barely eat without having pain, and all I do is lay down. I am miserable. I am afraid of what Remicade can do. If any of you out there have had this drug, please email me and give me your thoughts! I feel all of your pain, because I live with it as well. Stay strong, and maybe one day we can find a cure! ~Amanda; California Email:trashyflamingo27 -at- aol.com

Comments for Help for this hellish disease

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One year later....
by: Amanda

Here I am, one year later. Thanks to Remicade, I AM IN REMISSION!!!!! I encourage others to try this drug. I have my life back, and am able to live normally without the pain!!!!!!!! Thanks to all of you and your support. I'd like to hear how others have responded to Remicade. My email is trashyflamingo27@aol.com. Hope to hear from you soon!!!
Re; Tired Mom
by: Amanda

I agree with you. Remicade has saved my life!! I have been on it now for over a year, and I get my treatments every 4 weeks. I just had a port a cath put in my chest, so I will never need an IV again! I have regained my life back, and I am proud to say that I have been in remission since my first round of treatment! God Bless you TiredMom....its nice to know I am not the only one out here that loves Remicade!
results with remicade
by: tiredmom

I know the original post is almost a year old but I thought I should still share my experience with remicade for people who are searching for info. I have had crohns for 15 years; 8 years ago I had a resection. Prior to surgery I was on tons of meds and constantly on the steroid roller coaster. Within a month after surgery my crohns returned to the exact same area, at that point I started remicade infusions. For the past 8 years I have been recieving infusions, started at once every 8 weeks at 5mg per kg and currently I recieve infusions every 6 weeks at 10mg per kg. For 7 of the past 8 years I have not had to take any other medication and have done very well. When I would start to have symptoms the remicade order would be increased. I have had no side effects from remicade other than being tired on the infusion day and sometimes stomach cramps and diarhea on the infusion day but considering how sick I was prior to remicade, one day of being tired and having diarhea seems worth it to me. For the past year the remicade has stopped being as effective and I have had to take steroids and pentasa and will most likely have to stop taking it and switch to humira. I am sad because remicade literally changed my life, it has truly been a miracle drug for me. I recieve infusions with other people and I have yet to talk to anyone who has had any serious side effects from it. If you are going to have side effects they usually show up right away and the drug is stopped. All of the meds for crohns can have serious side effects, steroids can have some of the worst. You don't know how you will react to a drug until you try it because everyone is different and all of our diseases act a little differently.
remicade
by: Anonymous

i also stopped remicade,too many unknown side effects,

vomiting is a bad sign ,for me a bowel resection surgery made me a new man ,no pain,no constipation or diarria,,no cramps, thats what i would suggest depending on your situation,,,

it wont last forever but, i take pentasa, and imuran ,and prednisone if i have a flare up.

Dan
danhenry@embarqmail.com

Oh Mandy..
by: Roger

I know your goin' through more than hell sweetie..just hang there and only be with folks who truely love ya and care for ya! I guess everyone's got stress these days..but levels differ I do agree.Sometimes its good to try get to know the levels of anxiety millions of people go through..for that ya either gotta know it as a fact by understanding how this real world works and why people are more stressed in 2008 than even ten years ago...or..someone's just gotta enlighten you or ya gotta do research to know.Pain can be of many sorts..some are ill..some are depressed to a chronic point,others gotta walk on certain steps by compulsion and keep repeating it many hours a day,thats suffering too.I'm not sayin' to know reality is gonna cure your problem,it just makes ya aware your not the only one among thousands...its millions,its everywhere!Most folks who suffer chronic stress don't show they are,only 'cause in the real world ya get more attention if you're happy and successful..only because that person[s] who lets say admires that quality, is himself not happy..so an unconscious admiration sets in. Maybe thats human nature or just a resulted thinking after experiencing life with our circumstances.Its useful to know these facts and move on..just sayin'.."its my only life,so what the heck,I'l just take each day at a time"...then ya can start planning on those hours in that day...even if forty percent of the day is with contentment,its good enough.Just remind yourself there are millions probably suffering even more than ya...and millions more to your level.I'm a belever your mind is different to your brain..if ya wanna beat a bad feeling,its in your hands...the best person to help mood creativity is yourself..others can only help to think along.A new frame of mind has to be developed with a new approach,instead of self pity.Scientists are developing new cures each year for other illnesses,who knows they just may find somethin'for this one,who knows..uh huh?!Maybe they go deep into its etiology..
Another way of help is through forms like this when people speak of the similar issues ya got. To meet some with more or less your same medical condition..talking about it with them can make ya feel so much better.I really suggest ya make some friend[s] this way..you'l already feel better.
...and they'l be lucky too to be ya friend,not just because of this issue,,,its becoming friends with Amanda...just the Sweetest,Cutest..most Adorable gal in this whole wide world...Hell Yes!!
To Diana for comment posted 3/13
by: Amanda

Hi Diana,
Thank you for your comment. We have excellent insurance, so we are ok there. I am scared because I hear all the bad things about the Remicade. I am sorry about your situation. Feel free to email me, I'd like to hear more about yoru story. Trashyflamingo27@aol.com. Stay strong honey.
Remicade: The wonder drug
by: Diana

I have to tell you, I get Remicade treatments. I feel like a brand new person in about 2 weeks. I have suffered with Crohn's disease for 18 years and it comes and goes. Mostly, I hurt, vomit, bloody diarrhea, etc, etc. I tried everything else. Mine got to the point that I had anal fistulas and surgeries for that. My docs all wanted to do a colostomy. Thank God, my MD tried Remicade. My only problem is that I take it about every 4 months and now have no insurance. I originally got assistance through Centocor (who makes Remicade), but now we make too much money and have no insurance. The price of the med alone is about $18,000 for one treatment. Hopefully, you have good insurance.
remicade
by: Anonymous

remicade has many many side effects . ive went off it when i lost my eyesight for 20-30- minutes at a time . been off it 4 yrs still haviv major problems . scary

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