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Crohn's Disease
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Posted 8/22/2007 8:52 PM (GMT 0)
Hi Everyone i usually post on the UC forum but i am hopping over here to seek help for a friens. My friend Linda has had Crohns about a year now ithout really gaining remission.She was on a maintenance dosage of 30mgs Pred up until last Friday when she was rushed to hospital really ill with pain and blood loss. She has been getting IV pred and the docs started her on Im,uran and Aziathroprine(unsure of spelling sorry) today. Is it true that it can take a long time for these drugs to start working. Its just that the docs have told her that if she doesn't respond soon that she will have to go through surgery.

   Is there anything else they could be trying. I'm not sure if those with Crohns take different supplements than us UCers, but if you do let me know please. I am going to see her tomorrow and would be grateful of any suggestions that you have.

  She is only a young girl and i would hate to see her going through surgery so soon after diagnosis.

         Thank you all for your help.

                               Marty

Posted 8/22/2007 9:04 PM (GMT 0)
Imuran is azathioprine just imuran is the name brand. Imuran can take a few months to work and get to a theraputic dose. Pred should work very fast within a day or 2. When I was diagnosed they placed me on TPN for nutrition so my bowels could rest, I was on this for 12 weeks and was only allowed clear liquids and when you start to feel better and on high doses of IV pred (as I was) clear liquid only diet stinks especially when I was 8. I was in the hospital for 6 weeks and my parents learned how to do my line so that I could go home and return to school. My first day back to school one girl had a birthday pizza party...my broth looked so .....um...boring especially then. I was given 2 pints of blood when first diagnosed, then my gall bladder almost burst in 99 my platelets were so low I had to have 5 bags of plasma, this year I had emergency surgery...my ileum perforated. My disease was controlled on meds for 20yrs before this issue. I had many complications with surgeries which can happen but most usually dont have issues more so if the Sx is elective rather than emergency. I had 1 or 2 bags of whole blood this last time cant remember which it was though.

The Dr may want to try Entocort it is a non systemic steroid therefore it does not have as many side effects as prednisone also it releases at a certain point in the GI system to focus more at the problem as opposed to the whole body like pred. I am unsure if they would try that being the high doses of pred not helping. I have also been on azulfadine, asacol, and pentasa (on pentasa now as a maint. med). My joints are my biggest issue outside of this year...well they are acting up again but no surgery is warrented for that.

I will keep you and your friend in my thoughts and prayers
Stef

Hopefully your friend will get well soon, make sure they do the normal tests, colonoscopy, CT scan or even better for CD is CT enterography, and a SBFT. I had been on remicade prior to my surgeries and did well on it for 5 years. They also have Humira out now woo, I have not tried that drug but many on here have.
Posted 8/23/2007 1:38 AM (GMT 0)
Hi Marty Steph pretty well covered evertthing in her post the only thing I can add to it is a good friends support helps. Low roughage diet after they get her feeling better.Is she on ensure and the pain meds helped me .There are lots of drugs that do help I am sure her Dr.s will get her feeling better soon. lol gail
Posted 8/23/2007 4:11 AM (GMT 0)
I am sorry that your friend is going through all of this.I truely feel for her.I know when I was on Imuran it took like three and half months before I could see a different's but have to remember every is different.
Posted 8/23/2007 6:22 AM (GMT 0)
Sorry i meant to say Pentasa i know that the others are the same med. Guess my heads in another place at the minute. Thank you so much i will be using your advice Dragonfly. Thank you everyone for your support.
Posted 8/23/2007 10:34 AM (GMT 0)
Marty,
I'm so sorry for your friend. She should also ask her doctor about getting Remicade or Humira. Many people achieve remission while taking them.
I'll be praying for her,
Cecilia
Posted 8/23/2007 1:38 PM (GMT 0)
I wanted to add that surgery early in her diagnosis is not necessarily a bad thing. I think she really needs to weigh the good and the bad here. How bad is her quality of life right now? Sounds pretty bad. I know a few on this board who had surgery early on and then enjoyed very long remissions afterwards. Hope the meds work for her, but if she doesn't improve within the next few months I think she would feel better just getting the bad parts removed and getting on with living life. Dragonfly's story is an extreme and most people respond well to meds and when they don't and their quality of life is suffering, then I think that surgery should be an option. Will definetly keep her in my prayers.

God Bless,
Gail *Nanners*
Posted 8/24/2007 2:22 PM (GMT 0)
I didn't find out I had Crohn's until I had surgery. It's been a year and I feel great. My quality of life is better than it has been in 10-20 years.
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