PLEASE HELP NEED ADVICE

Hi everyone im 19 year old, in february 2011 i started having really bad abdominal pain went to the doctor he send me for endoscopy found nothing,, the pain continued and i started losing weight went from 160 to 135 pounds within weeks, Then went for CT scan they said might be IBD then went for colonoscopy they said ulcers in ileum and told me i have crohns. i started Asacol didnt help then was given pentasa 500mg 3x a day and imuran 50mg 2x a day. Took months to start working but it helped alot from June 2011 - september 2011 i had no or very few symptoms i also gained weight went up to 148lbs. but in October 2011 my symptoms came back to much diarreha to much abdominal pain every other week chills and fever i continue to go to my Gi but he would see me say yea these are crohns symptoms take my blood and then give me the next appointment for next blood test every blood test was a lil worse then the last blood test but my Gi would say its part of crohns also most of the time he wouldnt even see me he would have his assistant see me so in march i got to sick i was down to 115 lbs and was having diarreha even if i only drank gatorade.

So on march 23rd 2012 i went straight to the hospital they did a CT scan and showed to much inflammation in my ileum, also i had infection in stomach they put me on prednisone 100mg, antibiotic through iv for 15 days and fluids the GI i saw in hospital suggested surgery 3-4 centimeter of the ileum because it showed my inflammation was in the same spot as last year, so i asked around for advice and everyone said try other medication 1st because i had no blockage or blood in stool, even the surgeon suggested i try medication like remicade 1st because it has helped many people. So i said no for the surgery so the hospital decided to discharge me because they said i have to follow up with my Gi for Remicade when i left the hospital on april 5th. They put a picc line for Tpn and gave me 40mg prednisone for 15 days and told me continue imuran 50mg 2x a day and pentasa 500mg 3x a day and oral antibiotic for 4 days.

So i went to my GI Dr.LI and he tells me im going to send you to a different GI (the GI i saw in the hospital) because he has more experience and has seen more of my type of cases it sounded like he gave up on me and was tired of me. So i leave from there and find out that the hospital GI went on vacation and is coming back in a week so i waited then when he came back i called for an appointment but he refused to see me (Maybe because he was angry at me that i said no to him for the surgery) and he told me go back to your GI DR.LI and his receptionist refuse to give me a appointment,, then i call DR.LI and he tells me okay i have another GI you can see i got the appointment for this new GI for april 25th which was a long wait when april 25th finally came i went in to the office to see the new GI and they told me he doesnt accept my insurance so i didnt get to see him. i called Dr.LI office and they told me he went on vacation so now i had no GI to go to and i dont even want to go back to DR.LI anymore.

On april 26th i went to the nutritionist they stoped my TPN and removed my picc line becuase i started eating. But now the problem was Prednisone 40MG which had started to help was about to finish so i talked to the doctor who was filling in for Dr.Li over the phone and he said take 20mg for 4 days and then 10mg the next 4 day and thats it you'l be off prednisone. But as i started to taper my symptoms started to come back abdominal pain inflammation in my stool and chills at night, today was my second day with out prednisone and i had diarreha all day also im on scd diet but still have all these sypmtoms.. im so frustrated right now i want to stop imuran becuase i dont think its helping at all and i been on it for a year and it has caused to much lower back pain and knee pain, i want to start remicade or humira or should i get the surgery,, or should i ask for prednisone becuase it was helping me with the symptoms and the worst part is i have no GI to go to :'( Please help me thank you in advance feel free to write anything also if you had surgery or been or using remicade or humira please tell me about your experience if it put you in remission or not and how long have you been on it or how long it helped you and please write where is your crohns located THANK YOU

Post Edited (bkzb0y1) : 5/1/2012 10:59:07 PM (GMT-6)

Hey Bella thanks a lot for the advice and information really never though of asking them to put me on the cancellation list but will tomorrow when i start searching for new GI and calling for appointments i really need a GI that listens and just hope i can find one before i get worse i cant handle another ,,also really happy to hear about your colonoscopy results and that your in remission, once again thanks alot

I don't have Crohn's but my mom does. I'll tell you part of her story, before remicade was on the market she had such a bad flare up that she had to have six inches of her small intestines removed. The surgery went well but not without it's problems. After the surgery she was on prednisone for over a year and ballooned up to over 200 pounds. She had the moon face and everything associated with long term steroid use. The entire time she couldn't eat anything without running to the bathroom, ever. It got to the point where she would only eat once a day and had to pay right next to the toilet. She was also in and out of the hospital for IV fluids and meds and bowel rest. Then one day the doctor offered her this new medication called Remicade. It was that or another surgery and even though it was experimental at the time she decided to go with the meds. I remember the brown glass bottle hanging from her IV line and we were all so nervous about what the side effects would be.

Since the first dose of remicade my mom was able to avoid surgery AND she was able to stop the predisone. She lost over 100 pounds in a year and has fewer flare ups in the last ten years. Shes had several more bottles of remicade since that first does but she has only been hospitalized twice in the last ten years and has had no surgeries. For us, Remicade has been a miracle drug and we think it really works. Without my mom could be on a coloscopy bag right now as she was headed down that road due to blockages, inflammations and abscesses. I am so glad that she has been able to stay out of the hospital.

I'm so sorry you are going through this unfortunately it seems like the norm for Crohn's patience. My advice, is to try to find another GI soon. Go to the hospital that you like and see if you can find a nurse who will tell you what GI doctor's practice there. Then call their offices and ask if they take your insurance and how soon you get an appointment and don't be afraid to tell the receptionist your story and ask to be wait listed. i did that at the dermatologist and was able to get in two months earlier.

I hope you find the answers and get the treatment that you deserve. Its sad that GI doctors who are suppose to be schooled on Bowel diseases but they are so clueless sometimes.

Hey Kazbern i agree with you i think the taper was to fast also i was on 40 mg for about 27 days,, but i didnt question the GI thinking he knows better

Hey Nickelkriss thanks for the information and im really happy to hear how successful remicade has been for your mom wish her a long remission,, and yea i did get an appointment with a new GI but hope he can understand my story and pay less concern to why i changed my GI i hope he doesnt ask about that.

Hey keepingfaith thanks for writing and im happy humira is working for you ,, also thats what i been doing lately just searching up as much information about humira and remicade and other treatments for crohns.. also what do you mean you will find out in may if your in remission i mean is there a special test for that or blood test??