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06-01-2010, 11:39 AM   #1
Mike
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Noob...

Hey everyone,

I just discovered this site this morning and really enjoyed learning and reading through some of the sections. My name is Mike and I'm a Psych/Bio major at URI and starting to look at grad school. I was diagnosed with Crohns in September of 2009 after about eight months of suffering.

A little after Christmas of 2008, just about everything I ate made me throw up and I went from my hockey playing size of 6' and 210 pounds down to 160 pounds by July and skinny. I also had a fistula blow up to the size of a golf ball on my butt and had three surgeries to clear that up. I had one doctor cancel three appointments on me, another kept insisting it was just simple IBS, but a third one finally did an endo and found several ulcers right after my stomach and the colon showed my Terminal Ileum all ulcerated as well.

He diagnosed it right away and put me on 40mg on Prednisone, 8 Pentasa, along with Omeprazole. I also started talking daily vitamins, along with Calcium, D, Iron, Magnesium, and Fish Oil.

The Prednisone just made me eat and as soon as I dropped down to 20mg I felt awful again. I really started watching my diet and started living off sticky white rice and protein bars/shakes. I also started on Cimzia which was useless for me.

So now I am still on all my vitamins and others for the Crohns and Anemia. Also just on Pentasa and Omeprazole and still living off the white rice and protein bars/shakes. The doctor wants to get me started on Remicase asap, but I'm very hesitant. Despite feeling well and gaining twenty pounds back, he still wants to get me on it to avoid stricturing and other complications. (Excuse my ignorance I'm still learning the lingo).

A couple days a week I will still have to go to the bathroom six or seven times a day but I'm down to usually only two or three. I also am always tired but I'm still playing hockey a few days in the week and spend about two hours five/six days a week in the gym.

Thanks for reading
06-01-2010, 12:44 PM   #2
Astra
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Hi Mike
and welcome


well done for getting a quick diagnosis, lots of people here still waiting!
have a look at the Remicade Club thread, lots of fab remissions
glad you found us, see you around the forum
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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06-01-2010, 01:55 PM   #3
MapleLeafGirl
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Welcome. It's great you can still play hockey - that takes a lot of energy. Hopefully you continue to improve...
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Kelly

Diagnosed: August 2006
Current Meds: Imuran (125 mg), Budesonide (9 mg)
06-01-2010, 03:48 PM   #4
Manzyb
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Hi Mike! Welcome.

I started on Remicaid about 10 years ago after I was first diagnosed. It worked great for about 5 years, and then I switched to Humira. I know the side effects can sound really scary, but I never had any problems. It was truly a wonder drug for me.

hope you continue to get better!

Amanda
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06-01-2010, 05:50 PM   #5
Nyx
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Welcome I don't have any advice for you...but there are lots on here that I'm sure can give you some!
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Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

06-01-2010, 08:56 PM   #6
Entchen
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Welcome! Another psych person, sweet! Let me know if you have grad program questions. So sorry to hear the Crohn's has been difficult to treat, but you are in the right place for hints and information.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
06-04-2010, 10:35 AM   #7
Mike
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Thank you for the warm welcomes.


Welcome. It's great you can still play hockey - that takes a lot of energy.
I was going to play this year for my school but didn't have the energy for try-outs. But I'm so much lighter, I'm faster than I have ever been. I guess the Crohns has actually made me quicker, lol.
06-04-2010, 11:49 AM   #8
MapleLeafGirl
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Well that's one positive thing about it
06-04-2010, 12:50 PM   #9
Mountaingem
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Welcome Mike! I was hesitant to try Remicade too, but it has helped me so much, I wish I'd done it sooner. The relief from the fistulas alone is so worth it! The earlier in your disease you start, the better it's supposed to work (meaning it prevents complications) according to my doctor.
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I WILL STAY STRONG
I WILL FIGHT
I WILL WIN


Current Meds: Cimzia, Methotrexate, Prevacid, Sertraline, Nortryptaline, Prednisone, Atenelol
06-06-2010, 03:45 PM   #10
bethany84
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Welcome Mike!

I know the feeling, I have been very hesitant about joining the 'remi club' as well. The possible side effects were scaring me but I have got the point where it is decision time. I have found this site so helpful and has made me feel so much better about going on the remicade that at my next appointment,(depending on some biopsy results) I am going to agree to give it a go as I can't continue like this. It is ruling my life and I am learning from reading peoples posts on here that it doesn't have to. I hope you have the same experience from this forum, and decide what is best for you to be able to get back to normality.

Beth x
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