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Crohn's Disease
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Posted 3/15/2009 5:48 AM (GMT 0)
Hi!

I have had Crohn's for about 8 years now and am pretty much waiting for a cure. Doctors have told me they are not able to help me. I have a very severe and rare case. Yuck! Here are some questions that I thought I would ask some experienced Crohn's patients since we all know our bodies more. I really need some help and personal opinions.

1. What pain meds work for you!? I am just trying to figure it out. For now, I need to control my pain. I have severe constant pain, go D about 20 times a day with 50% of the time blood, etc. Nothing works. Percocet doesn't touch my pain, even @ 2 pills at a time. I would really love and appreciate recommendations of what work for you. Thanks!

2. Do any of you experience this? Very hard to explain. I almost always have severe pain. But @ times this pain is this: It is like I have constipation pain BUT still run to the bathroom because of the horrid pain and urge, but @ times I have to push (very hard) to get it out and it is very bad D. It is so painful. Suggestions? Or who has had this? And what is it or could it be? Doctors just tell me they don't know and I have been to many.

I would really appreciate any help I can get. I am so desperate.

Cheers!

LOVEPINK
Posted 3/15/2009 9:11 AM (GMT 0)
I'm sorry to hear that. I would try and find a different doctor and see if they can help. What about surgery?
I'm sorry I don't have an answer for you. Someone will come along and help with your questions.

Good Luck!
Posted 3/15/2009 9:29 AM (GMT 0)
i used tramdol for severe pain but i am allergic to it so i cant use it any more :(

Sometimes i have to go to the hospital and get morphine shots.
Posted 3/15/2009 12:14 PM (GMT 0)

Hello,

If it were me I would get myself another opinion in the gastro dept. You might consider the Mayo Clinic or a large teaching hospital. These places have excellent drs. You say you have tried all the different medications. Does this include say Remicade or Humira. With as much medication that there is available for crohns surely there is something out there for you besides Prednisone. Wonderful for crohns but with horrible side effects not to mention problems associated with long term use.

As for the pain mediction its really difficult to say what may relieve your pain. Our bodies metabolize medications so differently that what may help me will not even touch your pain. Do you see where I am coming from with this. I have CD and I am a chronic pain patient. If you have not tried Lomotil for the diarhrea give it a shot, its by script only. Most of the time codeine based pain meds also will help slow that problem down.

Good luck, Susie

Posted 3/15/2009 1:09 PM (GMT 0)
Hi I am not much help with the pain meds. I was wandering what they meant by rare? My thought of having to push so hard is that you might be having a go of it because of a narrowing...I can remember the same feeling with a blockage....have you had any surgeries and where is your crohn's located?.... How about a list of the meds you have tried to heal your crohn's with and are you on ensure? Are you on liquid diet or low roughage or TPN ? lol gail
Posted 3/16/2009 12:27 AM (GMT 0)
Well thank you very much to everyone for trying to help.  I am going to try to respond to everyone with 1 e-mail!

 

As far as medications I have been on, when I say everything, I mean everything.  Yes, Remicade and Humira to be included.  No, I am not on ensure and am barely eating much @ all.  It goes up and down as far as when and how much I eat.  I drink a ton!! 

 

I have had no surgery.  My Crohn's is throughout my intestined and my whole colon.

 

I have gotten a second opinion about 7 times including the Mayo Clinic.

 

Right now I just need a pain medication that will help my pain until a cure or a new drug comes available that I am able to go on that may help.  I have a lot of hope and a great attitude and I always will :).  You have to!

 

isergodur: could you tell me more about the pain med that you are talking about?  Is that what you take?  What is the diff in your experience between that and percocet?  I do go to hosp. for pain management when needed, which is often, but very expensive, so have to be careful there. But I have a lot of help no matter what, so I don't go because of that if needed.

Thanks

Posted 3/16/2009 5:14 AM (GMT 0)
Hi can anyone help me with information on peri-anal Crohns - it seems like no one else has this disease like I do.  My intestines and colon are OK but I suffer from fistular abscessess which have to be surgically removed (which means that most of my bottom has been cut up).  I also had a temporary colostomy which now because of surgery may be permanent.  Started on Imuran but not much improvement yet.  Is Remicade and Revelex (Infliximab) the same thing?
Posted 3/16/2009 12:04 PM (GMT 0)
Hi Lovepink I found ensure helped me alot when I was at my sickest and good for those skipped meals the body needs nutrition to help it ,how is your blood work and what deficientcies are you having? I had low potassium,protien and B-12.. hope you can get your pain to a manageable level.. have you seen a Dr. that specializes in pain management?

Anne Welcome to Healing Well Remicade is Infliximab yes... and is good for healing fistula's.. lol gail
Posted 3/16/2009 1:14 PM (GMT 0)
Lovepink I was going to ask if you had been referred to a pain mgmt doctor, but you said you go to the hospital for pain mgmt. I think a pain mgmt doc would be able to help somehow. I am so sorry you are suffering so much. I pray you find help soon.

Anniegetyourgun, welcome to Healingwell. I would suggest you make your own new post so yours doesn't get lost in this one.

Hugs,
Gail *Nanners*
Posted 3/16/2009 1:43 PM (GMT 0)
When I was in pain like that, I spent my life in a very warm tub. The water soothed my rectum and the heat from the water soothed my belly. I would litterally sleep in the tub. My husband would come check on me to make sure I was okay. I never took pain meds for my pain!! Didn't want anymore pills!! Good Luck!!
Posted 3/16/2009 6:37 PM (GMT 0)

Anniegetyour gun said...
Hi can anyone help me with information on peri-anal Crohns - it seems like no one else has this disease like I do.  My intestines and colon are OK but I suffer from fistular abscessess which have to be surgically removed (which means that most of my bottom has been cut up).  I also had a temporary colostomy which now because of surgery may be permanent.  Started on Imuran but not much improvement yet.  Is Remicade and Revelex (Infliximab) the same thing?

Remicade is suppose to be very beneficial for healing fistulas/abcesses so you should certainly look into that...good luck and feel better soon.

:)

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