So, I did it...

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/20/2009 5:43 PM (GMT -7)   
I haven't been on here much.. I've been hanging on the ostomy board.

I had a colectomy, it was supposed to be full, but when they got in there, it was relatively good looking, so they only took 12-18 in of the sigmoid and anus/rectum. They left the rectum (about 2-3in) in tact to heal and possibly re-connect. He was surprised about the amount of disease that was even there. Apparently, though the Humira caused a severe reaction, it DID heal my ascending, transverse, and descending colon. My doc believes the sigmoid and rectum would of never healed. I also had pretty severe diverticulitis, or the start of it.

So, now I have a colostomy. I'm still trying to figure it out. Some days are tough. Some days I wonder why I did it. Other days it's wonderful that I can essentially eat what I want and many people have commented on even my worst days post-op how "good" I look. My mom instantly saw my color come back (I have been dealing with anemia with Crohn's since dx). So, i know it was the right thing, but until I get a system and a new "normal" I'm a bit lost with it all. Insurance covers disposable bags, so that's what I'm hoping to move to soon.

I have had gut pain today, but I think I've just been pushing the foods... time to back down a bit! I will start Asacol in another week. I've never been on it. He's more preventative then anything. He said it's once/day. Any info on it? I can't believe I'll just be on a single pill! I'm so used to many other things. I'm also going to work on drastic diet changes. I haven't read up on gluten-free, but have considered it. I REALLY don't want to go through surgery again...it was tough, but it's over and done, and I've been told numerous times that it NEEDED to be done...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/20/2009 5:51 PM (GMT -7)   
Good to hear from you Kaycie, been wondering how you were. I think you did the right thing, and who knows maybe one day you can get 'hooked up' again.

Gluten free isn't that hard, although I'm not sure how much it's helping me. Take care.

Mike
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 10mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/20/2009 6:28 PM (GMT -7)   
Rider Fan said...
Good to hear from you Kaycie, been wondering how you were. I think you did the right thing, and who knows maybe one day you can get 'hooked up' again.

Gluten free isn't that hard, although I'm not sure how much it's helping me. Take care.

Mike


Funny thing is, my great-aunt (a retired 40 year surgical tech) asked me if they've tested me! They never have! Oh well. More stuff to question the GI about. To be perfectly honest, now that I'm post surgery.. I'm starting to eat more healthy foods.. granola, yogurt, wheat bread, meat, veggies, fruits, etc.. it's quite amazing! I was living on the ice cream/peanut butter/cereal diet before! We went to the grocery for the frist time a few days ago..and I just stood there and went.. "I don't know what to choose!" It's been 3 1/2 years since I had WAFFLE syrup! I mean, I don't eat pancakes all day everyday..heck, MAYBE once a money, but it was awesome to taste it again. I had it twice in the hospital, now I could care less if I had it again for a long time. I'm going to eat an apple here for dessert soon! I'm eating strawberries..hamburgers.. I'm just thrilled with that.

Thanks for the info on gluten. Really, it isn't hard..it's just figuring out what it IS in. I have a bread maker.. and I'm considering starting to make my own bread.. Probably cheaper and I could make it easily with a few loaves a week. I just have a tiny kitchen so I hate hauling it out and then hauling it back! If I made bread though, my only other downfall would be tortillas.. and pasta.. but I bet I could figure that one out.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/21/2009 4:22 AM (GMT -7)   
Hi Kaycie! I am so glad you are doing so well. I am sure you will be able to find a system that works for you. Just not being so sick anymore is wonderful. Enjoy eating again!!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/22/2009 9:06 PM (GMT -7)   
Thanks fallcolors!

I still have much to learn, and I'm pushing myself too much, but trying to learn to take it easy...the surgery is no picnic, but I'm hopeful!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 5/22/2009 10:36 PM (GMT -7)   
Thanks for giving me hope Kaycie!! Im going in for a colostomy in the fall and it's wonderful to hear from people who are doing well. Im not looking forward to the food I can eat (though I do miss ice cream...), rather im looking forward to not pooping my pants in Walmart! LOL.
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, still kickin!!
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

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