Hi, I'm new to this!!

[Conduct Johnson]

Hi there,

Im new to this site, so thought I would introduce myself!

My name is Cindy and I was diagnosed with Crohns at the age of 16 in 1993. I had a right hemicolectomy in 1997 and actually felt pretty good for a while.

I tried all sorts of medication as the disease began to return and have now settled on adalimumab which i find amazing.

The disease has now spread to my small bowel, which is being controlled by the medication but have recently found out (via MRI and colonoscopy) that I have 2 severe strictures in my large bowel which are casuing the bowel above the strictures to balloon. I am looking at an operation at the end of this year to remove my entire large bowel. Im not really sure what this means for me though? Can i live normally with jsut a small bowel? do I need a bag? Lots of questions, and im not sure I want to hear the answers!

Anyway that is my story!!!

 

[Angrybird]

Hello and welcome to the forum

Have you seen the surgeon yet to discuss the op and the likelyhood of needing a bag? Has a date been booked yet? I have not had this type of surgery so could not advise but we do have a surgery sub forum that is certainly worth looking at to get some info: http://www.crohnsforum.com/forumdisplay.php?f=71.

I will be keeping fingers crossed that it all goes well, please keep us updated on how you get on.

AB
xx

 

[BAJ542]

Hi Cindy,

Dont quote me on this, but I believe if your large colon is entirely removed, you will have a colostomy bag. If it is your small bowel (which my mother had), you receive a ileostomy bag. But then again, my mother had her's done in the 1970's and we know medicine has done leaps and bounds. But that was my first question to my doctor...will I end up with a bag like my mom. So far, so good. But he cant promise me anything down the road.

Good luck and let us know!

 

[David]

Hi Cindy and welcome

As you have Crohn's Disease, there's a chance that removal of your large bowel will result in a bag as the J Pouch surgery often leads to complications later on for Crohn's patients. HOWEVER, there is a French study where people with Crohn's were given a J pouch and kept in remission via the use of biologics. Another variable to take into account is your ability to become pregnant decreases about 80% after pouch surgery so if you're wanting to have a child in the future, take that into account. Your ability to become pregnant does not decrease with a bag.

If they remove your entire large intestine and the small intestine is connected to the abdominal wall for output, it will be an ileostomy. If they leave some large intestine then it will be a colostomy.

Obviously I don't know the finer points of your case and colectomy may indeed be your best option, but for situations like this, I think it's always a decent idea to get a second opinion from a colorectal surgeon who has experience with Crohn's disease patients.

All my best to you!