Surgery approaching - What to expect?

[stacie2609]

Hi Guys,

A bit of background firstly:

I have Crohn's disease affecting the terminal ileum as well as perianal disease and fistula's which currently have setons in situ. I'm currently on 100mg/daily of Azathioprine and 40mg/fortnightly Humira.

I had an MRE and Colonoscopy done in September which both showed strictures distal and proximal to the terminal ileum. As a result I was referred to my surgeon who has said that the won't be entirely sure what needs to be done until he operates. The options being a stricturoplasty, a right hemi-colectomy or a resection of around 30cm of small bowel including the ileum (this being the most likely). He also stressed that there is the chance I will end up with a stoma.

So, I found out this week that surgery has been booked for the 21st February which is good because obstructive symptoms were becoming more frequent and prolonged.

What I'd like to know is:
- What should I expect after surgery?
- Anything that you wish you had taken to hospital?
- What to prepare at home prior to surgery?
- Any must haves or key information that you wish you had known?

Thanks in advance guys, you're all amazing!

 

[Cheesy79]

Hi Guys,



A bit of background firstly:



I have Crohn's disease affecting the terminal ileum as well as perianal disease and fistula's which currently have setons in situ. I'm currently on 100mg/daily of Azathioprine and 40mg/fortnightly Humira.



I had an MRE and Colonoscopy done in September which both showed strictures distal and proximal to the terminal ileum. As a result I was referred to my surgeon who has said that the won't be entirely sure what needs to be done until he operates. The options being a stricturoplasty, a right hemi-colectomy or a resection of around 30cm of small bowel including the ileum (this being the most likely). He also stressed that there is the chance I will end up with a stoma.



So, I found out this week that surgery has been booked for the 21st February which is good because obstructive symptoms were becoming more frequent and prolonged.



What I'd like to know is:

- What should I expect after surgery?

- Anything that you wish you had taken to hospital?

- What to prepare at home prior to surgery?

- Any must haves or key information that you wish you had known?



Thanks in advance guys, you're all amazing!

So, I'm BRAND NEW to this but I'm hoping I can help. I've had over 11 surgeries so I joined for myself but I saw this and I thought, I wish someone would have prepared me.

1. Surgery is physically and emotionally tough. I can't express that enough. You need to get yourself ready for an ostomy no matter what. The first surgery I had there was a high chance of having an ostomy and I got away without it. But in the end 15 years down the road I have a permanent ileostomy. I didn't realize how mentally hard it was going to be on me or knowing how permanent it was going to be. Luckily I am a huge dog advocate for patients. So I asked for a therapy dog before I went into the hospital. That helped me in enormous in the hospital.
2. If you're going to have your family there, you should be ok. I wish I had brought more pants that had drawstrings and no elastic. Nothing that was binding at all.
3. After surgery the doctor ordered home health care for me. Having an ileostomy I had to learn how to take care of it and have a learn how to manage it, is a lot. You cannot do it in a few days. But you learn.
4. Since I've had a lot of surgery, I know surgery is hard. You have slow down on the pain meds. For me, I'm a woman and it was really hard for me to have the ileostomy and adapting to a new lifestyle. But there are so many people out there walking around with ileostomies you wouldn't believe it. Many famous people check it out. I am getting my Masters in marriage and family therapy,. This has become part of my story and it has made me become who I am today. Although I hate the ileostomy, I have learned to reframe and create a new narrative. What I mean by this is, my stoma's name is Stan and he wears diapers not bags. With this new narrative, I can live with things better and I can except them. And now I feel better.

Hey I hope that helped. Let me know if you have any other questions I am more than willing to help you and you can ask me anything. I am an internship as a therapist and I hear everything and I mean everything.

 

[ronroush7]

I wish you the best. Make sure you take anything you enjoy doing like books, puzzles,etc. They will probably try to get you up and walking the day after the surgery. Try to walk as much as possible. Please keep us informed on how you are doing. Also, when you first get home, take it slow with food. Again, best to you.

 

[Cheesy79]

So I'm new. Maybe I should have said what you said. :/. So "ditto!" Did I say too much?

 

[ronroush7]

So I'm new. Maybe I should have said what you said. :/. So "ditto!" Did I say too much?

You are fine.