Less than two weeks to surgery and starting to worry

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beckxbecc
New Member


Date Joined May 2009
Total Posts : 13
   Posted 6/2/2009 12:17 PM (GMT -6)   
I have a little under two weeks till surgery for unresponsive UC. I'm having a total colectomy with a j-pouch and temporary ileostomy. I'm fifteen and before now it hasn't really felt that real but now with less than two weeks to surgery day I'm starting to worry about what will happen. My mom has not been a real help here bringing up pain and what could go wrong and so I told her to stop but it is still making me worry. I'm having it done labroscopically and the doc's have said the pain is more of discomfort, and its not that painful really with the help of pain-meds. So I was wondering if you could tell me the truth, I just want to know what to expect so don't sugar coat anything. I know some people have higher pain thresh-holds so tons of responses would be very much appreciated.

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 6/2/2009 12:26 PM (GMT -6)   

I am so sorry you are going through this at such a young age. I had a colectomy March 13th - I had more issues with the stoma and depression/anxiety than I did with pain. My wounds took a bit longer to heal because I had been on prednisone for a long time.

Yeah- it hurt, I am not going to lie and I did have the surgery done laparoscopicially. I took pain meds for approx. 3 weeks. I would say I have a moderate pain threshold.

You are young and will bounce back quicker than a older person. Expect pain but remember it is temporary and most likely you will feel better from the UC almost immediately.

I wish you the very best and admire your courage.


Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- TBA


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 6/2/2009 12:55 PM (GMT -6)   
hi there

my son, who is 24, had the first stage surgery almost four weeks ago. and even though he went into the surgery very sick because of the UC, he did great and was out of the hospital 5 days later. he had it done laproscopically as well. beleive it or not, because he had been on so much pain medicine before the surgery, we really encouraged him to try to do without it after he left the hospital and he did.once he got home, he took no meds, believe it or not! i think for him the hardest part has been looking at the stoma. that said, he's healing beautifully and everything is on target for him for the next surgery.

i, too, am so sorry you have to go through this so young, but take peace in knowing that once your colon is removed, you will be free of this disease that i'm sure has turned your life upside down. if it makes you feel any better, his girlfriend didn't bail on him and doesn't
seem to be freaked out by the bag, nor do his friends. it's a bigger deal to you than it is to anyone else. good luck and keep ansking questions - the more you know the easier it will be

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 6/2/2009 9:55 PM (GMT -6)   
It's not as bad as you're worrying it to be (make sense?).

When you first wake up in the recovery room, you'll notice the pain, that's when I remember it the most.
But then, pain meds kick in, and things get better. You'll want to take it easy for a few weeks/months. Your young body will probably be able to handle it better than our older ones!
TAKE YOUR PAIN MEDS. When I was in the hosp., I kept complaining about the pain, and the nurses would say, you need more pain medsUSE YOUR PUMP. I kept not using it when I needed it b/c I was afraid to take so much. I didn't want to depend on them. But I learned that not only FEEL so much better when you rely on them, but you attitude is more positive (b/c you're not suffering) and a positive attitude will help you heal.

And you're having a laproscopic procedure, so that's going to make things much less painful-less muscle to cut through (muscle hurts the most), smaller incisions. Trust me, I know, I've had it done both ways :P

Don't worry about the pain. You can handle it.

Don't over do things during recovery! That will make the pain last longer. Take your time. (I wish I would've listened to that advice)

When will they reconnect your j-pouch?
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


beckxbecc
New Member


Date Joined May 2009
Total Posts : 13
   Posted 6/3/2009 11:23 AM (GMT -6)   
Thanks so much. That really helps to know that yeah it does hurt but if you take your pain meds youll feel better. I'm just worried im gonna wake up, freak out about the pain and think 'what the hell did i get myself into?!?'
We havent set a date for the reconnection we are gonna wait till after the first surgery to worry bout the second.

glaciergrl
Regular Member


Date Joined Apr 2005
Total Posts : 269
   Posted 6/3/2009 1:40 PM (GMT -6)   
You are going to be just fine! I'm 25 and had my proctocolectomy April 17, also done laparoscopically. I wish I would've done it sooner and not waited so long. You will be able to finish out high school and continue you on to college or the work force without missing out on dances, games, parties etc. It sucks that you have to have it done yes, but think about how much better you are going to feel when it is all done. I'm excited for you!!!

about the pain...I tend to have a high pain threshold. I felt it to be more of a discomfort. They only pain I remember having was when they pulled out my drains (take a deep breath and hold it in) and when I accidentally pulled my drain when I was sleeping. I freaked out about the pain too at first. When I got out of surgery I made sure that pain button was always in my hand. I also didn't like taking the pain meds because they made me feel dizzy and very disoriented. I only took them for about 10 days. Everyone is different. Don't feel bad if you need them! If you need more take more. There is no reason to be uncomfortable. Don't ever be afraid to ask for help from your family or anyone here. Everyone just wants the best for you!

Good luck!

Holly
25yrs old/ teacher/ Wisconsin

Diagnosed UC Pancolitis in Nov 2004
Diagnosed PSC in Oct 2006


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 6/3/2009 2:58 PM (GMT -6)   
Glad you are reading and asking questions--keep doing that. By the way, there is a teen ostomy forum on www.uoaa.org website. Here's the link for the forums http://www.uoaa.org/forum/index.php you'll find a general discussion page like ours here and a teen discussion page. might be helpful?

In regard to pain, in most hospitals, almost every doctor, nurse, resident will ask you to rate your pain on a scale of 1 to 10. This will help them gauge how you're feeling and assist in getting you the right amount of pain meds. Asking questions and keeping track of how you feel is a good idea. You might consider bringing a notebook so you can write down any questions or concerns for your doc or any advice your doc or nurses give you.

Remember this is all about YOU feel and hurt--you are the most important. Don't worry about what your mom or anyone else thinks.

As for me, my brother and husband tell me I was in a lot of pain when I woke up but I don't remember it at all. When I came home, I was in more pain than in the hospital and had to work on getting the right combination of painkillers. Really, it turned out ok.

I think you're being incredibly brave and am impressed that you are gathering information! cool
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.

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