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This is it - the big push

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Ulcerative Colitis
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Posted 3/25/2010 6:15 PM (GMT 0)
Well, I had my surgery consultation at the Cleveland Clinic yesterday and I'm scheduled for the first of likely three surgeries on Thursday. I'm freaking out a little because it's so soon and I feel like I have a lot to do between now and then but we wanted to have it taken care of now since my husband is between jobs and our kids' spring break is coming up. I'm actually glad it's so soon it doesn't give me much time to think about it. The surgeon studied my records and gave me a brief exam. For those of who you who don't know I've had UC for five years now and I've gone up the ladder of drugs, including Remicade, which worked really well for almost two years. Humira is doing nothing for me and I've gotten sick alot since I started taking it. I'm not going to have it done laproscopically since my colon is really diseased. He recommended three steps, mainly because I've been on immunosuprresents for a long time and also I just started a low dose of prednisone again. Was hoping for two but oh well. He told me most people with UC don't even realize how bad they feel until they have surgery and almost instantaneously feel better. I'm looking forward to it. Would love to hear any advice from those who had surgery about what to bring, expect, etc.
Posted 3/25/2010 6:18 PM (GMT 0)
Wow that is soon! I wish you well and I hope your recovery is swift. Please let us know how you are afterwards ok?
Posted 3/25/2010 6:22 PM (GMT 0)
Wow, next week for the start of your new life! I have read that most who have had the surgery comment about the relief. Surgery isn't fun, but your situation with the meds...best to get it over sooner than later.

Hope you're able to set up the help you'll need in order to make it as smooth a process as possible.

Curious how old your kids are?

q
Posted 3/25/2010 6:35 PM (GMT 0)
Best of luck, and please keep us updated!
Posted 3/25/2010 6:42 PM (GMT 0)
Quincy, my kids are 10,7 and 3. It's nice that the older two will still be in school. I don't think my 3-year-old is going to understand why I won't be able to carry him, why he can't jump on my belly, etc. so that will be a little hard.

Posted 3/25/2010 6:47 PM (GMT 0)
     The best of luck to you!  I will keep you in my prayers.  Keeping my fingers crossed that Humira works for me, otherwise, I will be headed for surgery too.
Posted 3/25/2010 6:53 PM (GMT 0)
Wow, congrats! We'll be thinking of you. Please keep us posted about your UC free life.
Posted 3/25/2010 7:24 PM (GMT 0)
Scrap girl,

My son, Dillon (aged 18) has just finished this same journey. His story is very similar to the one you tell. And YES, it was almost like magic how quickly he felt better once the colon was removed. He is now four weeks post his reversal and is doing great! He is again living life the way a teenager should.

I am happy to discuss any questions you have concerning this first surgery and the following ones. I can also give you my e-mail address, if you like, but I think it is helpful for others to be able to read these posts. It is up to you.

Cathy
Posted 3/25/2010 8:25 PM (GMT 0)
WOw..almost sureal how quick that is..good luck and heres to a fast recovery!
Posted 3/25/2010 10:14 PM (GMT 0)
That is amazingly quick. I agree, better not to stew about it, just get it done! Good luck.
Posted 3/25/2010 10:20 PM (GMT 0)
Gook luck and I hope all goes well. Let us know how you it goes x
Posted 3/25/2010 11:31 PM (GMT 0)
Good luck and hope for a quick recovery...I know how hard it is to have kids and UC. Please update us as to how it goes.
Posted 3/26/2010 12:38 AM (GMT 0)
YAY for being healthy soon!
It is amazing, the minute i woke up, i thought, OMG this hurts (lol) then i thought, wow im better! And it was amazing, cause i felt clean, is the best way to describe it.

Anyway, be sure that your stoma is placed correctly! that is the most important thing! When you go for your marking, wear your normal clothes,, and make sure that you sit, stand, lay down, do all the things you might do when you get marked.
Take gas-x to the hospital, you will probably need it.
Posted 3/26/2010 12:46 AM (GMT 0)

Take a bathrobe so you can walk the halls without the gown flopping open behind you!  Take slip on shoes to use for walking.  Take magazines.  You probably won't be able to concentrate in book reading.  Music helps too.  Your surgeon is 100% correct; you have forgotten what it feels like to feel good!

Best of luck!

Sue

Posted 3/26/2010 12:53 AM (GMT 0)
Scrap girl,

all the best to you, and I am sure after it is all over you would have been like why didn't I do this earlier. Wishing you the best and a speedy recovery. I am scheduled for the end of april and wish it was sooner. This is good news. It may seem very quick, but I am sure you won't regret it. All the best!
Posted 3/26/2010 1:39 AM (GMT 0)
Wow, great news! I can't wait to hear about how much better you're doing in a couple weeks. Goodluck!!
Posted 3/26/2010 3:25 AM (GMT 0)
oh another good thing to take, is some hand lotion, some alchol wipes (cause at first it will be hard to get up alot to wash your hands), some chapstick the air is dry in there.
I had my gameboy but honeslty i was too tired to play much.
A few things to remember!
when you wake up, you will have a clear bag, and it will look disgusting, your output will probably be bright green and the smelliest stuff in the world! dont freak, it wont stay that way! When i woke up and saw that i was a mess, noone warned me, and i thought OMG its gonna be like this forever, this is horrible!
Posted 3/26/2010 3:49 AM (GMT 0)
Scrapgirl...Maybe your husband and older kids can explain to him when you're in the hospital that he can't be lifted up and that you will need more hugs to help you get better. Maybe if he has a job to do...like helping you with stuff, he'll not be as needy? I think if kids are explained openly and fairly honestly they might understand.

I wonder if there are any books on the subject or maybe a doll that's used as a learning tool to help him understand. Maybe you can prepare him somewhat.

Will he be allowed to go to the hospital...or is that too young? Do your other kids understand what you'll be going through or what you've been going through with your flares, etc?

Maybe there are some suggestions from the ostomy forum as to how health changes and limitations in a three year old's world have been handled regarding that surgery,.

I agree with the others as to what to pack....you might want to rent the TV.

quincy
Posted 3/26/2010 2:44 PM (GMT 0)
Best of luck Scrapgirl for a successful surgery and a quick recovery...and on to a healthy and happy life! Keep us updated on how the surgery went.
Posted 3/26/2010 4:29 PM (GMT 0)
my son was almost 2 when i had surgery, and he stayed wtih my grandma the week i was in the hospital and for 5 weeks after that, until i was able to lift him.
We didnt bring him to the hospital, because he had come to see me once before in the hospital and it had really scared him, so we decided it would be best not to bring him. And he wouldnt be able to understand why he wouldnt be able to jump on the bed with me and stuff like that.
Then he stayed with my grandma cause my husband worked 4 nights a week, and instead of having him staying here when DH was home and there when he wasnt and getting all confused, he just stayed with her. I was sooo sad, i missed him sooo much!
Posted 3/26/2010 6:08 PM (GMT 0)
bring comfortable pants for when you leave the hospital. i must've worn sweatpants for a week and a half after my first surgery.

my ipod touch and the hospital tv kept me sane while i was in my room. i was also fortunate enough to have a private room.

also walk as much as you can when you're up to it. the more active you are the sooner you'll get out of there.

and i was also on the full gamut of immunosuppressants before my surgery (pred, 6-MP, and recently off humira) and was still recommended a 2-step laproscopic procedure. had no complications post-surgery either. but every surgeon's thinking is different i suppose.
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