UOAA Discussion Board

Hello everyone,

I'm new here and am looking for some support and advice. I have Crohn's disease and my colorectal surgeon says I need surgery but is unsure if she will do an ileostomy or a colostomy until she opens me up. I think she is leaning towards an ileostomy and to remove my colon so as not to have any problems in the future. I'm a little scared of an ileostomy due to dehydration and high output and would prefer a colostomy I think but not sure if that will happen.

So, when I schedule surgery, I won't know what surgery I'm having and that makes me uncomfortable. Has anyone else had this happen? I don't know if I should seek a second opinion to get a better idea of what type of surgery is best or just schedule the surgery with her.

Thank you for any help!

Carolyn

Carolyn,
I have been in similar surgery situations and can only say you have to have confidence in your surgeon. Going in for surgery doubting your surgeon is harmful as your surgeon needs your help as well. If you have any doubts get a second opinion.

Thank you! That’s what I’m going to do. I have an appt scheduled for 12/11 for a second opinion.

I'm three weeks into life with my Ileostomy, and it's a learning curve.

The output is a thing. But my wound nurse told me and I've seen from first hand knowledge that diet is a huge factor in how things go. When I eat as I should (which I'm still trying to figure out - safety hint: the smoking hot chili from the sandwich place you love is NOT recommended - but to be honest I forgot I had this thing for a few hours on Monday. It reminded me ) I forgot because I was doing great controlling it with diet. Four days later I'm still kinda recovering but lesson learned.

I agree with Snowgoose. If you have doubts, get a second opinion. Embracing what you have and why you have it from Day 1 has made a huge difference for me. That was only possible because I have an almost unshakable confidence in both by GI guy and the surgeon he recommended for me. This was my path forward.

Gatorade G2 is a huge help. My surgeon put me onto it. Basically told me to empty a six pack of them a day and do my best to replace my water intake with them. I've had maybe one day where I felt slightly dehydrated but otherwise it's been working like a charm.

Good luck to you.

It's scarey.
The unknown.
I didn't have the option.
Ileo was the only option for me.
I was very sick and afraid but I had to do it. And now I don't regret it.
Ileos do have alot of output. Nobody tells you your gonna have to empty as soon as you eat. Literally. It happens 95% of the time. Or empty 10-15 times a day. That's only because I don't let it get past 1/3rd full. Some days are way less. All depends on how much you eat. And now that I can eat I eat alot. But it doesn't hurt to do so. Not like it did going the "natural" way. So that's ok.
I have no idea what it would be like with a colostomy. I've read some on it. But not much.
But whatever happens. Trust your surgeon. I had a very competent surgeon. I trusted her and she was right. In every aspect. She said she could make me better at the beginning.
And she did! Trust. I went through pure hell for two years with a pouch. She gave me one.
She knew it wasn't working but we avoid the inevitable. Until we reach a point. I reached the point and told her I was ready.
Just don't be afraid of either. Ileos are not bad. Especially when they fix or as I say "cure" your problem. I'm happy with it. It's not ideal. But I'm not sick or in pain anymore. And really that's what counts.
Richard.

Hi Roark,

Thank you very much for replying. I'm not a fan of chili, so that shouldn't be a problem but thanks for the information about diet. I'm sure it's a learning curve and thanks for the suggestion of Gatorade G2. I'm hoping for a colostomy so I don't have to worry about dehydration but I don't know if that will pan out.

Thank you again for your help!

Carolyn

Thank you mysticobra! Yes, the unknown. I'm sorry you didn't have an option. I'm not sure I really do either. I have told my surgeon I would prefer a colostomy but the final decision is hers once she's in there and I'll just have to trust her. Not sure if I do yet, which is why I'm getting a second opinion. I'll just be happy not to be in pain anymore so in the end, I'll be ok with whatever I end up with.

Thank you again for replying!

Carolyn