Am I Truly Getting an Ileostomy? Confused About My Surgery

Hi, I'm new here. I have Crohn's, I'm 39, and I've never had any major surgery before. On Monday or Tuesday, I'm supposed to get an ileostomy and possibly a resection of my small intestine. 

I'm in the ER now from a partial blockage. The surgeon wants to wait to get my distention down by using a nasogastric tube. If my intestines continue to be too dilated, then the resection will have to wait for a second surgery. I'll need a second surgery anyway to reverse the ileostomy. So I'll have two surgeries whether the resection is done now or later. 

I'm told the point of the ileostomy is to let my bowels rest so that the new connection has a better chance of being successful. 

What confuses me is that my worst strictures are in the jejunum and duodenum. So how are those sections resting if I'm truly getting an ileostomy? Or is it technically a jejunostomy? I don't see how the sections which need removal are getting any rest if food still has to travel over those sections before being dumped out later at the ileum. 

I'm definitely going to ask the surgeon next time I see him, but I'm eager to know the answer now. Thanks for your time reading this. 

Don't be discouraged by the lack of responses at the moment.

I saw you posted this earlier this afternoon.

A lot of people might be at work or shoveling out from the snow, but I'm sure people will try responding.

Also, you have a very complicated case. You seem to be very knowledgeable and know what's going on, which is really great.

I mean, I didn't have that luxury.

It was a life or death situation.

But I think your primary care should be involved here because the surgeons, you know, their one job is to cut you open.

You have to be careful of that. Now's the time to think and rethink, and perhaps your primary care physician might be the best person to speak to about this.

It's incredible how much you know about what's going on. That is fantastic, and I think part of the reason it's so complicated is probably the reason most of the people aren't replying.

A lot of people are just going to sit back and wait to see who replies and what they say because it sounds very complicated.

I'm wishing you the best and blessings, man.

Really, Godspeed.

Hi K

I cannot answer your questions as I haven't been in your exact circumstance. You already seem to be well informed, so as you say, the finer details need to come from your medical experts when you get the opportunity. Write down your concerns so you don't forget them when the opportunity comes.

Wish you well

You really need more answers from your medical team. Hopefully, they know enough about your condition to provide precise answers and not educated guesses. Reversal is tricky. I thought I would get a reversal and all would return to normal. It does not work that way. Reversal reconnects the intestine, but the digestive system might suffer complications. Write down your concerns, ask pointed questions. You have to be your own advocate. Be a pain in the butt. This is your health and your life. Like Warrior mentioned, surgeons cut, remove, and sew. They are not experts on digestive disease.

Good luck

I hope his lack of response means he's researching and questioning his doctors... it's a little unnerving not knowing where he's at in this process now, after he posed the question.

Hoping he chimes in soon.

Words of Encouragement from Ostomy Advocates I Hollister

I have done a lot of research. I have questioned the docs a lot. I simply wanted a really quick answer and a way to introduce myself to this group.

Gastroenterology stopped by today (remember I'm in the hospital. I can request people see me. Doesn't mean they will right away). They said my strictures in the duodenum and jejunum are not severe, just high in quantity. It's the terminal ileum strictures which are the worst.

So it is truly an ileostomy and it does make sense. I simply had a question about terminology more than anything.

I'm 39, I've had Crohn's since 14 and never had surgery. I've got a lot of damage at this point. I've avoided surgery as long as I could. But even I can't deny it anymore. I've been miserable for years now. Tried every alternative and natural thing you can think of. The last few years I just keep ending up in the ER. I want my life back, I want surgery.

The surgical team already told me previously they'll be shocked if my ileostomy can't be reversed.

Wishing you the best of luck with whatever way the dice falls.

Good luck, mate. You will have a few good people on here to talk to after your operation. Regards, IGGIE