i can't live like this

I am 31 yrs old i have been diagnosed with crohn's disease for a little over 2 yrs and i have dealt with the harsh symptoms for over 4 for as far as i know.I am on alot of med's along with my predisone steroids anyway i still have the symptoms i'm not gettting any better and i hear the surgery helps alot.I wan't it.I can't live like this.I dont have the tolerance or patience my Dr. keeps giving me more med's instead of refering me to a surgeon .is there a way i can do it on my own or should i try a new dr.?

If you don't like your dr and you feel like he isn't providing you with the appropriate treatment that fits YOU as a person, then you should of course switch doctors!  Everyone is different and requires various levels of treatment and options.  I, for example, would refuse surgery except as a very last resort.  I also don't like being on very strong medicine and am working toward a more holistic approach to control my symptoms through my diet and lifestyle and supplements, etc etc.  But there are other people who would prefer a more traditional/cutting edge medicine approach to their treatment and that is the wonderful thing about where we live and the resources available to us - YOU HAVE THE OPTION SINCE IT'S YOUR BODY!! :)  I would start looking for another dr TODAY, you sound like you need a new situation!   

In what area do you live?  Maybe there are people here who can help refer you to a good GI in your area.

Good luck!

Hello....Other then prednisone what other meds are you taking? Have u tried Remicade, humira and/or Cimzia? This disease is exhausting, frightning and plain ole' Pain the Butt....At this point most Doctors don't preform surgery unless there is scar tissue build up or some kind of obstruction that meds can no longer help with....Sometimes surgery is not the ONLY answer...I say this becasue I thought this myself and low and behold it's a year and 4 months and the crohn's is back in business were my surgical site is....Everyone is different but I have heard sucess stroies and horror stories, but all in all usually Drs try to get you on a TNF blocker....along w/ maintenance meds....

Hey, and welcome to healing well. Sorry you are feeling so poorly. As another poster mentioned, it takes time for the crohn's meds to kick in and make a difference. BTW, what meds are you on, and when did you start those?

I agree you need to be able to discuss your concerns with your doc, and he needs to tell you what you should expect on these meds, ie. what level of relief and by when; and the course of action he has in mind for you if the meds you are on currently don't work. I think that if your doc just brushes you off after prescribing meds, that perhaps you need to find a different doc. I think for crohn's patients, because the course of the disease is so individual, I like doctors who take the time to talk about his/her plan of action.

This is what my husband's GI does. He tells us this is what we're going to try, and hopefully within the next week you'll see some improvement, if not we'll go on to try this other thing, etc. So, I think you should have a conversation with your doc and see if he'll be willing to work with you to give you more of a sense of his plan. I would advice against being in a hurry for surgery - surgery is no guarantee with crohn's disease. The disease can come right back, and then you're back to where you are right now, except missing some bowel. So, do think about exhausting all medical options prior to seeking surgery - I think surgery for crohn's is when nothing else works, IMO. But of course, it is your body, and your choice, but just be sure to weigh the options and the pros and cons of each before seeking surgery.

Hope you get some relief soon.

((Hugs))
PV

It doesn't sound like you've given the anti-tnf agents like Remicade/Humira/Cimzia (these are usually given as an infusion or an injection periodically) a try. My husband was facing surgery for certain, and remicade was his last hope. Remicade got him out of the hospital and living a normal life for the past 2 years. I think it is worth discussing the anti-tnf agents with your doc prior to going for surgery.

Perhaps you can get your girlfriend to post the meds you are on currently. Other than prednisone, none of the meds you listed address the underlying inflammation of crohn's disease, and prednisone is a steroid and should not be used for long term treatment. But there are other meds in the mesalamine category (such as Ascaol, Pentasa, Canasa, Colazal), immuno suppressants (imuran, 6-mp and MTX), and anti-tnf agents (remicade, humira, cimzia) that are used in the treatment of crohn's disease. In addition to those, there is a less systemically absorbed steroid called Entocort that is used when the inflammation is in the small intestine.

Please consult your doc, or find another doc who can help you get your disease under control with medication. It doesn't sound like you've exhausted all the available medical options. What I've discovered with this disease is that you have to be educated about this disease and take control of your treatment options, because noone is going to care for your health as much as you can, and the best way to prevent mistakes and mistreatment, is to know enough about this disease and treatment options to be able to discern when you are not getting proper care. Also, do you know where the disease is - large intestine, small intestine, etc?

Also, another thing you can try is an enteral diet - a liquid diet to give you easily absorbable nutrition and to give your bowels a break. My husband likes Ensure - when he gets sick, he switches to pretty much living on ensure. It may help control symptoms and give you nutrition to survive.

I hope you get the help you need soon and find some relief.

PV

well said PV!
"address the underlying inflammation of crohn's disease, and prednisone is a steroid and should not be used for long term treatment. But there are other meds in the mesalamine category (such as Ascaol, Pentasa, Canasa, Colazal), immuno suppressants (imuran, 6-mp and MTX), and anti-tnf agents (remicade, humira, cimzia) that are used in the treatment of crohn's disease. In addition to those, there is a less systemically absorbed steroid called Entocort that is used when the inflammation is in the small intestine."

You can get pill managers with alarmed timers on them, or you can set the alarms on your watch for them.

I am not sure if I understood you correctly so I need to ask if you are seeing a gastroentrologist? A doctor who specializes in disorders of the digestive tract, there are even those that specialize futher into IBD specialists.

Let's face it it is time that you empower yourself to know what exact medications you are on and in what amount. As with any chronic illness it is recommended that you keep a list of your medications in your wallet, along with any allergies. I keep a laminated copy in my wallet, but when I am on pred I have a couple of cards that I have to write on as I go down in dosage.
No one is saying go off pred cold turkey, if you do it could be very bad for you. But pred is used generally as a short term medication in crohns, because it has such negative long term side effects.

There are so many drugs out there for you that may help you a lot. Surgery really should be the last resort. As with
all surgeries they come with risks, so I would talk to your doctor about some different meds.

I wish you lots of luck...

Get a new doctor, it's the key to successful treatment/management of your disease.
Good Luck!

GP's are a waste of time in terms of managing your crohn's. You NEED a gastroenterologist and yesterday.

Surgery for crohn's is usually a bad idea if you're thinking resection. It usually comes right back- its different from UC.
You need to get the inflammation under control.
If asacol and pentasa haven't worked for you, have you tried cipro/flagyl, methotrexate, Imuran, or any infusions or injectables?
Where is your crohn's? Small intestine, colon?
it follows a sequence, if the small guns don't work, you go to the medium guns (imuran) then the big guys (humira and remi)
I know how you feel, I was on humira and remi and still nothing.

One thing you can try to keep yourself sane is lomotil or imodium to at least slow down the frequency of the bm's. you could also try metamucil or something as it can help bulk up your stool.
Good luck.

Have you sought out a gastro yet? I'm speaking from experience here -- you need a specialist and you need one now. Believe me I've done my share of not taking this DD seriously and denying that I needed more extensive treatment. But 4 years ago when I found my specialist at a teaching hospital, I found the treatment and care I needed to get back on track.

If at all possible, get to a teaching hospital and have a consultation with one of their gastro docs. They have no problem pulling the plug on drugs that aren't working and moving along to surgery which will give you your life back -- run don't walk!!