First colon removal and ileostomy

[CrazyCrohnieKatie]

Hey there!! I'm new on here and I have a few questions. First a little about myself, I'm 23 I have a 5 year old son named Jeremiah, I was diagnosed with Crohns disease when I was 12 and have been on tons of different medications. I've tried, Pentasa, 6 mp, remicade, humira, steroids, liadia, and currently on just liadia and 6 mp. I have hit a wall with this disease and just can't seem to get a break!! I'm down to 88 lbs and feel terrible, on the 28th of this month I am having my entire large colon removed and getting a permanent ileostomy. The Dr said this is my last resort since nothing else has helped. I act like I'm excited for the surgery and not nervous, but deep down...I'm terrified!! I don't know what to expect, I'm scared being so thin and doing a surgery like this, I'm scared of complications afterwards, just everything. What should I expect after surgery while still in the hospital? Foods? Meds? And for you that have had an ileostomy done, was it a good choice? I'm so tired of running to the bathroom, or pooping my pants and not being able to do stuff with my son. Please I just need some advice on what to expect...good or bad...

 

[DJW]

Welcome to the forum. being nervous is normal. I had my permanent iltostomy since I was 18/19 when I had mine installed. Nothing was working and I was seriously ill. It was emergency surgery. After surgery you will slowly introduce clear fluids then full fluids then food into your diet. They will likely give you a pain management pump. Press the button to administer a dose. As far as the ileostomy goes...it gave me my life back. But you will need to give yourself time to adjust. Not days or weeks but months. The early days can be very disheartening with your changing stoma, leaks and being a newbie at everything. That's where you need to give yourself time. You'll get used to it and you'll be an expert. Sending you my support and best wishes. Dave

 

[nogutsnoglory]

It's totally understandable to be extremely scared this is a major operation after all. It is life-changing and many things will be different now but overall you can live a fairly normal life.

Ostomy surgery today is fairly safe and many of these procedures are performed every day. Your diet will probably be very soft low fiber diet for at least 4 to 6 weeks after surgery. After that you can begin to incorporate regular foods slowly. Peoples opinions on whether the surgery was good or not really will very. Some are so grateful they can live regular lives again not worrying about pooping themselves. Others hate the bag due to body image issues and other complications and just want to have a reversal.

 

[CrazyCrohnieKatie]

Thank you for the feedback. I'm just getting so damn nervous for some reason, idk why tho. I guess I'm just scared that it won't work. They are removing all the parts of my large colon that are inflamed, so I'm hoping that will make the pain go away. I just REALLY want to gain weight after I get this done. I'm done to 88lbs at 5'7. My normal weight is about 130-140. Im also nervous about the ileostomy, everyone I know, knows I'm getting it. I just want to be able to wear tight clothes without it showing too. Dave, I really hope mine gives me my life back as well, I miss doing stuff with my son.