HealingWell
Search Close Search
☰

Total Protocolectomy surgery booked

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/5/2014 8:27 PM (GMT 0)
Wow, I have waited over two years for this surgery after my emergency surgery.....and now that I have a date - September 29, I am completely FREAKING OUT.

I think because of my previous experience (emergency surgery, life support, ICU, induced coma) I don't know how to handle "planned surgery". I am scared of the pain, the hospital stay and terrified they won't create a new stoma like the champ I have now.

I am excited to have an end ileo....the loop has been a bit of a challenge but not unbearable.

Just needed to vent I guess.

K
Posted 9/5/2014 8:34 PM (GMT 0)
I am excited for you :) I would imagine it's very scary but it will be worth it when you're feeling great and no longer struggling with the loop. I hate having a date for stuff like that too. it just looms in my head, but on the positive side, you know what you're in for and you have time to plan... You have our support here. Best of luck & I am looking forward to seeing your updates.
Posted 9/5/2014 11:03 PM (GMT 0)
     Why did they create a loop in the first place?  Why not just give you an end ileo?
Posted 9/6/2014 12:27 AM (GMT 0)
Why indeed......I still have no answers to that question. I guess because it was such an emergency. It was a perforation after a stricture dilation that was undetected for three days. Took them 25 litres of saline to wash me out and just about lost me three times in the OR. I think they did what they could and closed me up not knowing if I would survive or not. Was in an induced coma for four days and in ICU for a week and then the ward for another 10 days.

So I guess I am thankful that they did save my life but I would have preferred them doing it all the first time. I feel like I have been on hold for two years.
Posted 9/6/2014 4:28 PM (GMT 0)
     I would think the loop ileo was more difficult to create than an end ileo, unless, the doctor figured you would most likely want it reversed at some time in the future.  I will keep you in my prayers.  You sure have been through a lot!
Posted 9/6/2014 6:33 PM (GMT 0)
Thank you Christine. I can use all the prayers I can get!

:o)
Posted 9/6/2014 7:34 PM (GMT 0)
Hey Larasmom, you’ve been with us folks here for awhile and know a lot about what’s to come. You’re way more informed and experienced than most new ostomy recipients and that’s a good thing, I guess. Should you still FREAK OUT? Sure. Seems normal to me. Should you be scared of the pain, the hospital stay and all the possibilities? Of course, unless you have some magic way of separating yourself from intelligent reality. Please try to forget about why they did the other stuff and just know this is going to make your life so much better. Name your new stoma “Champ” so it knows what’s expected of it and know we’ll be praying for you with the expectation of the whole mess being way easier than you imagined. If you anticipated your “planned surgery” differently I would be concerned.
Respectfully,
Michael A
Posted 9/6/2014 11:16 PM (GMT 0)
good luck! I understand the whole planned vs. emergency mindset. With planned, you can THINK & think & think.... not always a good thing! Obviously I could say all the usual things- "it'll be fine", "your pain will be in control", etc. But I won't! You're already way ahead of the curve re. living with an ostomy- this will be a blip in the road for you, that's all.
Posted 9/6/2014 11:52 PM (GMT 0)
Hey, again, Larasmom. I forgot to mention I had the emergency loop after a surgery to remove the CR tumor and the bladder tumor. Then I had the scheduled end colostomy postponed and rescheduled. With that and some other crap I was introduced to anxiety, depression, PTSD and, you know, stuff like that. I even had one person say, “Ya think that’s bad, let me tell you my story.” I let him live for some reason. I’m writing this just to tell you it’s been over two years and everything is great. I barely remember how to spell PTSD today.
Wish you the best,
Michael A
Posted 9/7/2014 4:09 PM (GMT 0)
My surgery is scheduled for September 16th. The only hope I have is that my life will drastically improve. I've had jpouch surgery & a revision, then after complications my doctors changed my diagnosis from UC to Crohn's. I'm underweight, anemic, & have been on humira so I'm a little nervous for the surgery (total protocolectomy) & the recovery. Hopefully in 6 to 8 weeks I'll be feeling better and living life again!!
Posted 9/7/2014 7:57 PM (GMT 0)
Mre, you will be two weeks ahead of me....perhaps we can exchange emails. I will put mine in my profile.

Good luck!
Posted 9/7/2014 10:25 PM (GMT 0)
Just sent you an email so we can compare notes. :)
Posted 9/15/2014 3:11 AM (GMT 0)
Good luck everyone! I have several friends going in for surgery in the next month. So many lives will be improved :)
Posted 9/15/2014 10:58 PM (GMT 0)
Thank you vegan!

Sending best of luck and good wishes to MRE. She goes in tomorrow morning.

Two weeks today and this will all be over for me......looking forward to the next step of my life.....COLONLESS!!!

K
Posted 9/16/2014 12:50 AM (GMT 0)
Good luck, Larasmom.

There's no way I personally could look forward to this particular operation, but I do already have an end ileo: it might be a different story if I didn't.

Must also be uncomfortable living with an entire, presumably diseased, colon - I think I would still be totally ill if I had my entire colon left inside of me.

Any reason why they're not keeping your rectum and reconsidering a reconnection? Too diseased? I suspect mine will have to go eventually... :-/

Anyway, best of luck!
Posted 9/16/2014 1:20 AM (GMT 0)
Yup, NCOT, too diseased and just done. I am done with the mucous, blood and pain. The ostomy is nothing compared to this pain from the colon. I can't wait for it to be gone. It's very uncomfortable, and I can't take my Humira anymore due to surgery so I am very sore.

Trying to stay focused and positive.....less than two weeks now.
Posted 9/16/2014 2:04 AM (GMT 0)
Good luck tomorrow, mre.

Larasmom, I hope the next two weeks go quickly for you and you can get some relief.
Posted 9/16/2014 8:51 AM (GMT 0)
Thank you. I am hoping things go well and the recovery isn't too terrible. It's very different having planned surgery as opposed to emergency surgery. I am not sure I enjoy all the waiting.....
Posted 9/16/2014 11:09 AM (GMT 0)
Good luck, Larasmom.

A little over 3 years ago, I was in your shoes and was literally counting the days until my surgery.

Like you, I was DONE--take it all and let me get my life back!!!  It was the right decision for me and I re-claimed my life through surgery. 

You will do fine and be so glad to have the pain and perks of a diseased colon all "behind" you smilewinkgrin

Posted 9/22/2014 2:14 AM (GMT 0)
Best of luck. I had my surgery July 7th. All I can say is that your life will be greatly improved.
Speedy recovery!!
Posted 9/22/2014 8:53 AM (GMT 0)
Thanks Rchodos. And welcome to the forum!
✚ New Topic ✚ Reply