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Newbie with some Questions

Hi,

I am new to the forum and wanted to see if I can get some advice. The short version is I am 25 and was diagnosed with Crohn's in April 2012. I was brought to the ER to have a appendectomy. When the surgeon preformed the surgery he found that I had a fistula, hole in my intestine and large abscess. He informed be that he thought I had Crohn's. It took me about 6 weeks to recover from the surgery and I drains put in and a Picc line with TPN for nutrition because the abscess kept coming back.

Finally in early July, 2012 I had a colonoscopy and was 'officially' diagnosed with Crohn's. I was placed on Asacol. In October, 2012 I was admitted to the ER with a partial flare up and placed on Prednisone and Azathioprine. My GI doctor slowly increased the Azathioprine and decreased the Prednisone based on weekly blood tests.

Around December 2012 when my dose of Prednisone got to 10 mg I started to have some pains (I don't really get most common symptoms of Crohn's i.e. diarrhea, weight loss etc. only pain). I saw a Crohn's specialist at a University research hospital who suggested to have surgery to remove my ileum because it was scared from the appendectomy and would keep getting inflamed and causing problems. My regular GI doctor agreed and in February, 2012 I had a small bowel resection and the ileum removed.

I was slowly recovering and even went back to work about 6 weeks later. Then my groin started swelling and I did a CT and they found some pockets of abscess and a fistula. I was placed in the hospital for a week with drains and a Picc Line and strong antibiotics. The short term goal is to have all these things clear up and sort of give my intestines a rest to heal by using the Pic line for nutrition.

I have been talking to my GI doctor about long term options and he said the choice comes down to either going on Remicade/Humira or another surgery to remove that part of the intestine that seems to be flaring up.

I just wanted to see if anyone has gone through anything similar (i.e. flare ups so close together, surgeries so close, choice between meds or surgery) and what there experience has been like. There seems to be some draw backs to both and I just wanted to see what advice anyone had since I am new to this and this is all still overwhelming.

Thanks for any help anyone can give! Sorry this is post is so long!

Candace
 
Cpremo, (Candace)

I just want to welcome you to the forum. You will find lots of people to talk with, great support and find lots of information.

My daughter has been in a flare since she was diagnosed in jan 2012. It wasnt until her 8th doubled Remicade dose, continued Asacol, cortifoam and acidophillus starting working together that she has had 3 weeks of being symptom free. I know her situation is not exactly like yours, but it sure seems common to have a hard time getting the initial flare under control or have several flares one after another.

I hope you have a lot of people around you to give you the support and help you need during this time in your life.

I hope the picc line helps you heal and I do recommend Remicade. Get that Crohns under control as soon as possible.

Are you also taking a probiotic?
 
I had surgery in 2003 with about 2 feet of smaller intestine removed. I have been on aza since then (with two years of bo meds in between). The surgery back then was necessary because of two strictures and scaring. In any event, if my doc said "surgery or biologics, what do you want?" Of course I go for biologics first, try long term Crohn management, stress relieve, a goos diet, multivitamin therapy and endurance sport. No matter what, surgery should always be the last option.
 
Hi,

Thanks for the replies! To answer your question Hope345 i am not taking any probotics. My GI doctor hasn't really suggested many supplements to take but after browsing this forum it sounds like I should start. I still have a week or two before I am going to come up with a long term strategy but thanks for the replies!
 
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