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Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 4/20/2009 10:45 PM (GMT -6)   
Hi all
Saw my colorectal surgeon for my follow up after my ileostomy surgery on march 4th and looks like we have to go ahead with the removal of my rectum and anus as I apparently still have active disease there and he says a reversal would be a nightmare for me so looks like I  will have to get used to living with a bag, but its a small price to pay for getting my life back to some kind of normal, but still a part of me is feeling down also doesnt help that my boyfriend and I split after 2 years together. I ended it after a lot of thinking about which way my life was going and didnt see a future with him so had to make that decision, but it still hurts. I have to get used to feeling good about myself with a bag, I must admit I am scared about another surgery too, the surgeon says it will need to be done in 3 to 6 months as I have been getting the feeling like I need to poop and lots of blood and mucus is coming out, sorry tmi. Not nice. Anyway thats about it for me at the moment. I hope you are all doing well. Take care

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 4/20/2009 11:01 PM (GMT -6)   
Just wanted to send you hugs and good wishes. You've been through a lot. i've never had "real" surgery (just i/d for abscess) I am only imagine the nervousness around surgery. It's great to hear that living with the ostomy is a small price to pay. This disease takes so much away us, the least of which our dignity. I wish you the best! Take care of you...
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 not enough response
--currently taking budesonide suppositories, 3mg at night.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 4/20/2009 11:05 PM (GMT -6)   
Big hug and lots of prayers and good thoughts for you to get better. Sorry you are going through so much. Pehaps this next surgery will be the last needed.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Regular Member

Date Joined Jun 2004
Total Posts : 70
   Posted 4/20/2009 11:13 PM (GMT -6)   
I can give you one thing to be thankful for:

I had a colostomy bag for 6 months about 3 years ago after my resection went wrong. Apparently something in my skin composition didn't get along with the adhesive stuff on the bag. The bag would fall off all the time. Sometimes I would wake up covered in ****. I ended up having to change the bag once a day. It was something in the skin of about 10% of people that caused it.

Anyway, it was a huge relief to have the reversal. My thoughts are going out to you during your tough times.

New Member

Date Joined Apr 2009
Total Posts : 6
   Posted 4/20/2009 11:27 PM (GMT -6)   
My best wishes to you! Hopefully you get better very soon and be able to start combining more natural, hoilistic and alternative medicine to your conventional medicine approach to eventually decrease or discontinue the medications with lots of side effects . All the best!

Veteran Member

Date Joined Jun 2005
Total Posts : 981
   Posted 4/20/2009 11:41 PM (GMT -6)   
Im only taking 5 mgs of prednisone and lexapro Inna having the surgery also got me off all the other meds so for that I am thankful as well. This next surgery has to be the last for me cause theres nothing else left for them to take out lol. I only have some small bowel left just enough to make the ileostomy, so i was lucky there too lol. I have also had the bags leak on me Jackel but I have that sorted now, I just need to use lots of stoma paste. Thanks for your kind words all. I love this site you are all awsome

Regular Member

Date Joined Feb 2009
Total Posts : 161
   Posted 4/21/2009 7:40 AM (GMT -6)   
I wish you luck with your impending surgery and the changes you are going through right now.

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 4/21/2009 8:25 AM (GMT -6)   
I'm sorry to hear that you need this procedure! At least you will never, ever have problems down there again. No more worring about that possibility. And surely that is something to be thankful for! Continuing to have the urge to go with blood and mucus is just a ridiculous and unnecessary thing to live with! I hope your recovery time is rapid and you can get on with your new, free life!!
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.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/21/2009 8:35 AM (GMT -6)   

(((andorable))) Just wanted you to know that I am sending healing thoughts and prayers your way.


Gail *Nanners*

Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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