losing my guts or my mind

daffy

Regular Member

Joined : Aug 2004

Posts : 100

Posted 8/31/2005 5:04 PM (GMT 0)

I should have gotten a bag last surgery april 2004. the surgeon says next time my gi says maybe not. I dont know how bad you have to be but I also dont know how they expect you to live. I dont have much intestines left. I do know what I eat or drink I had better be by a bathroom or else. cant bend or it comes out. always water never formed anymore, depending on what I put in my mouth just determines how fast and how much pressure will be behind the water I take 8 lamotil aday cause when I try to stop the water just turns into acid and eats up my insides and outside. I listen to how well you guys are doing after the bag and I think there is hope but why do I have to be sick before they do anything. I had a bag in 94 for 3 months I couldnt wait to get rid of it swore I couldnt handle one on for the rest of my life. Almost 12 years later and I have no life, its looking pretty dam good. Oh Im sorry Im new here usually in the crohns site, been depressed lately and reading more. .. Thanks alot for listening

Suzy2

Regular Member

Joined : Aug 2003

Posts : 335

Posted 11/11/2005 7:23 PM (GMT 0)

I don't know how I missed this post. How are you now? Did you have the surgery in the end?

I have an Ileostomy now after suffering 25 years of Ulcerative Colitis. so I know exactly what you mean about always needing to be near a bathroom. I can only tell you that my life with a bag is so much better than it was before surgery. So much so that last year I traveled by airplane for the first time ever to go on holiday to Menorca.

I also think it is wrong that you have had to get so sick before they will consider giving you the surgery. I would have thought that it is much better to avoid having to have an emergency surgery. Sometimes it is difficult to understand the way some Doctors think. I wonder if they are stalling because they are concerned that you will have trouble with accepting the bag again.

I hope that you are feeling better now.

Sue.

Sherrine

Forum Moderator

Joined : Apr 2005

Posts : 18467

Posted 11/13/2005 11:37 PM (GMT 0)

Having the ileostomy was a Godsend for me also. I suffered with Crohn's for 13 years before they finally operated. But, I had never had any intestines removed before my ileostomy surgery. I was chained to the toilet. I travel all of the time now...even to Europe and I also love snorkling! I have a pool (I live in Florida.) and am in it for hours a day and the appliance hasn't stopped me from that either. I just can't move my piano when I do my spring cleaning!

I had the same problems that you mentioned. Before surgery, though, I was prescribed a product called Librax. It would relax the intestines and it really helped a lot. My problem was centered in my colon and just a little in the ileum. Maybe this could help you.

Sherrine

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