Ileostomy surgery next week

[amy94]

hi everyone! im new here
i have crohns disease and am having a permanent ileostomy next week.
i was wondering if anyone could give me any info on what it will be like when i come round from the surgery? and what i'll feel like for the first few days after it? i've read that they give you an epidural, will this definitely happen?
sorry for all the questions! im just a bit scared
Thanks
Amy :smile:

 

[ameslouise]

Hi Amy!

Welcome to the Crohns Forum and an early welcome to the Stoma Club!! You are in good company!

Have you had prior surgeries?

Are you getting your rectum sewed up as well, or is your doc doing that at a later date?

Epidural - check with your doc. I had one and it helped ALOT!

Where are you located (US, UK, Canada, etc)? Just curious!!

I had my permanent ileo in March 2011 and life has been GRAND ever since! I love my stoma and it has given me a quality of liife I haven't known in years. The roughest part of the surgery for me was the rectal sew up. Whoa boy, that was tough. It was a good month until I could sit for any length of time. In general, it took me a good couple of months to be functional again - the worst part being regaining my energy. I think I went back to work part-days after about 7 or 8 weeks, but not full time for about 3 months. Everyone's different, and how soon you get back to things will depend on how sick you are now, your age, etc etc.

Give us a little idea of your background story, which will help us offer advice that will be helpful but not too scary!!

Good luck!! - Amy

 

[Thermo]

I recommend searching through the forums, there has been a lot of information on this topic posted. Ask before the surgery if they will give you an epidural sometimes you get one sometimes you don't. But I will say the first couple of days after will be a blur as you recover you start getting stronger and stronger but those first couple of days are never fun, good luck and think about writing your story and surgery story on the forum for everyones benefit while you are recuperating in the hospital your story will help others.

 

[amy94]

Thanks for the relpies
No I havent had any surgeries before, this will be my first one.
I was diagnosed about 5 years ago and have worked my way through all of the medication available. I'm on methotrexate and adalimumab now, but they've stopped working aswell so the ileostomy is the only option.
Im not getting my rectum sewed up next week, i think thats going to be done later thankfully! sounds painful!
Im hoping it will improve my quality of life aswell, peoples stories on here make me feel more positive about it
Thanks for the help and i'll let you know how it goes and write my story once its done
Amy
ps im from the UK

 

[CheerBear12]

Omg god sounds awful getting rectum removed and I've got to get it done argh;( a month before you could sit x

 

[Misty-Eyed]

Hi Amy! I had my permanent ileostomy op in October although I had my bum sewed up too! I think how you'll feel will depend on if you're having your colon removed at the same time too?

I didn't have an epidural, but I had a morphine pump. I loved it. I remember being in lots of pain when I woke up, but that was mainly due to my bum hurting and trapped air from having my surgery via keyhole. They pumped me up with loads of drugs and then I was fine!

Things after that were ok, really. I found learning to change my bag etc really easy, but think it helped that I'd had a few sample bags and a fake stoma given to me before my op! To be honest, it wasn't as bad as I thought it would be and it was the first op I'd ever had (minus investigations). You will feel tired though but the painkillers they give you make everything much nicer. Do ask them though if you need more pain medication! I used to wait until they came around in the morning with the meds, when really I could of done with them at 6am.

 

[Misty-Eyed]

Omg god sounds awful getting rectum removed and I've got to get it done argh;( a month before you could sit x

I didn't think it was THAT bad. I was sitting in a chair the day after the op.. although have to admit a bit of blood did end up on the floor! To be expected really considering it had just given birth to my colon.

But you just learn to sit with the pressure off your bum.. like sitting with your feet up infront of you or with your legs to the side. It was more standing up for any length of time that used to make my bum area feel heavy and ache. I did take a cushion to work with me though!

 

[CheerBear12]

I was thinking of taking a cushion to work afterwards how long were you off for and how long before you healed and got your strength bk up? Im so scared I don't want it doing xx

 

[Misty-Eyed]

From the op day to going back to work it was 5 weeks but don't forget I had my colon out, butt sewn up and ileostomy formation all in one go. Work is also a 40 min drive away and I worked from home a bit beforehand and did short days.

In terms of healing... It's still underway. I had loads of perinanal disease and my rectum decided to take a bit of my lady hole with it.. I had a recto vaginal fistula and it's not wanted to heal. Going to see a plastic surgeon now to sort it out. But despite all that, I'm so glad I got rid of it. I had strictures in my rectum etc and I'm glad it's all gone. Alot of people here still seem to complain about their rectal stumps and problems with it. I now have no active crohn's, not on any meds and I feel great. First time since I was diagnosed. You just have to look on the bright side.. No more docs sticking their fingers up my arse!

 

[CheerBear12]

Lol, just hope I have no problems with and good luck with the surgery to sort it out=( let me know how you get on hope it goes well for you. Was yours done keyhole? take care x

 

[Misty-Eyed]

Thank you! Will be good to get it sorted because then I can move on with my life! Good luck with you too! I'm sure it will be a lot better than you think. and yes, mine was done via keyhole xx

 

[CheerBear12]

Thanks I hope so just hope I'm making the right decision I feel I have no other choice with my diagnosis. They said they will do it keyhole. Absolutely dreading it xx