WHAT DO I HAVE TO DO TO GET THE SUGERY!?

[VCASILLAS]

I HAVE BEEN SICK SINCE NOVEMBER 2007. BEFORE MY FLARE UPS WERE ABOUT EVERY 6 MONTHS BUT NOW ITS JUST MY DAILY LIFE. CROHNS IS TOTALLY TAKING OVER MY LIFE. MY DOCTOR HAS JUST PRESCRIBED ME PREDNISONE THAT I AM TERRIFIED TO TAKE BUT I AM GOING TO GIVE IT A TRY. I HAVE A FEELING THAT BECAUSE I HAVENT RESPONDED TO THE OTHER MEDICATIONS THAT I WONT TO THE PREDNISONE EITHER. SO I ASKED MY DOCTOR WHATS NEXT IF THIS DOESNT WORK?? AND HE SAID HUMIRA!!! THERES NOOOO WAY IM TALKING THAT STUFF! IF THE PREDNISONE DOESNT WORK I WANT THE SURGERY! BUT HE SAYS NO! SO I AM GOING TO GET A SECOND OPINION. ANY SUGGESTIONS ON HOW I CAN PUSH FOR THE SURGERY IF THE PREDNISONE FAILS?? THANKS

[UCMcPain]

I am severely allergic to immuran. I am on a maintenance does of 6mp Entocort and 5 mp pred, 500 mg pentasa. Now, I take calc supplements, iron, and vitamin supplements.

I can tell pred is my life saver. Without it I wont have a normal lifestyle.  The only thing about it is I don't like to take anything beyond 10 mg a day.  Higher does are highly toxic.  Each person responds differently.  But, I am hoping to put-off remacaide as far off as possible and surgery also does not seem very pleasant.

[Bonnie7672]

No worries my friend, I am actually on medro packs instead of prednisone bc I was not responding well to the prednisone. Prednisone can cause many side effects in different people, and yet some people are able to find great success with it.   The med packs are just a different kind of steroid therapy for flare ups.  I am also on a daily regiment of Imuran.  it has been slow in helping but I do feel it is starting to kick in.  There are so many different surgeries I am not sure which one you are speaking of.  I have been living with crohns as a part of my daily life for about a year and we are working on uping my imuran to a dose of 250, I am currently at 150.  

[crohnscommander]

I think the goal is to put off surgery for as long as possible. You might go through the pain of surgery and recovery only to have a new segment of your small intestine flare up. You want to exhaust all options before surgery. I have severe Crohn's and my doctors insisted that there would be no avoiding surgery and powerful immunosuppressants for the rest of my life. However, I found the Specific Carbohydrate Diet (SCD) and it has totally turned things around for me. This diet takes a lot of discipline, but it's well worth the effort. My whole family has Crohn's but I am the only one who is drug free and without surgery. All my siblings eat the standard American diet and they are on powerful drugs and my oldest sister has had two bowel resections only to have the Crohn's appear in a different segment of her small intestine.

I'm new to this forum, so I apologize of the SCD has been mentioned  before. It has worked better for me than any drug I've tried. I'm not sure if it works for everyone, but you might want to give it a try. You can get better and lead a very normal life. Don't give up hope! Also, I find that meditation helps keep my stress under control and makes my guts feel all around better. Be well!

[travjones27]

All yeah, I'm on Humira, lomital for diahhera, xanax, vitamin b12 shots, and iron for anemia that i got while having crohn's due to lack of obsorbing nutriants in the intestans. BUt if your in not alot of pain and just have diahhera and a little discomfort surgery will not help everybody. Tip of advise also ( if you smoke cigs, STOP IMIDIATELY) you will get better very soon. I just recently got the anemia after 5 years being diagnosed with crohns and anxiety disorder, which i really dont know if i need the xanax, but it calms my gittery stomach alot, my gasrto DR. recommended a visit to the shrink.

[travjones27]

One important thing you want ot make sure is that you are agood and healthy as best as ayou think you can be with crohn's. I had to get a TPN central line going into above heart that feeds you because i couldn't eat very much do to pain and discomfort . I'm 6'5" and was only 150 lbs. i should weigh about 230 lbs. So i gut my weigtht up a little with TPN and had 2 feet taken out without me even knowing it until they opeded me up and did exploratory surgery. It sucked bad but really helped me except getting hooked on pain meds. God will led you in the right direction. I was prept and ready once for surgery and backed out a couple times cause i thought i was feeling better, but not really. I still have alot of diahhera and discomfort but not as bad when i had the bowel obsrtuctioins and bloddy stool. People and employers don't relize what this does to your lifestyle and job or even staying home raising kids. (ITS HARD)!

[saraheberle]

i dont think you should push for a surgery , my father in law has chrons and has surgury 3 times he has a  bag maybe you can talk to your doctor about that and see if  it may help you. also and the most common thing that kills with chrons patients is the surgery its self being they are always so hard on the body , but im no doctor and i wish you the best.of luck.

[carrie384]

I am so ready to have surgury too... The problem is that when they remove the diseased portion the healthy portion can then be attacked and your faced when another removal and so on and so on.The surgeons seem to be really reluctant to operate especially in younger patients. They want to preserve the gut for as long as possible. I am on prednisone, immuran and now have started remicade infusions. The prednisone has always seem to help with pain but these other drugs are draining.I hope this helps

[VCASILLAS]

I have crohns in my small intestine also. I def. dont want to have that tweeker feeling. I just started my career and when I dont sleep well I dont function well so I'm worried the side effects will take a toll on my job. Anyways thanks for the info and the prayers.

[Tracydelatte]

I am on Imuran and I also have to take the prednisone when I flare up. But I love taking the prednisone cause it make me hungry and it give me so much energy I never want to stop. I does make my heart flutter sometimes but besides that, it works wonders on me. I have crohns in my small intestines and I've been suffering with my rectum lately. It seems like everytime I go to the bathroom  my rectum hurts so much. My lower tummy hurts also. It wakes me up in the morning with cramps and usually I go to the bathroom a few hours later and then I'm suffering all day with my butthole. I haven't been back to the doctor since this started. I am a person that usually wait till it too late and I'm sick as a dog before I go see my doctor. I don't know why I do that...lol
I hope you feel better. Let me know how the prednisone works for you.
Praying for you,
Tracy