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Crohn's Disease
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Posted 9/5/2010 4:56 PM (GMT 0)
I saw a surgeon on the 2nd of september, and he has said he will do an open procedure to remove the 30cm's of scarred ileum. I'm happy with what he has said, and i actually prefer to do the open procedure even though its a longer recovery time. I want him to have a good old rummage in there and make sure we have everything.

I think i'm fairly prepared as in 'i have thought of lotso f things i need to sort' but my surgery isnt till 9th of november. Ironically that was to be my graduation day from uni. Still fingers crossed this surgery will allow me to continue on with my life.

So things i have thought of

* take my own pillows
* insist on the pain pump
* take my ipod
* take my laptop + DVD's
* bring clothes that have loose waistbands - i was thinking lots and lots of lovely pj's rather than actual clothes
* bring hard soled slippers, and flip flops for the shower/bath
* bring dry hair shampoo
* lipbalm and hand moisturiser
* two clean dressing gowns (just in case i mess one)
* baby wipes
* basic toiletries for me (all travel size)
* ask for anti-anxiety meds whilst waiting to go into the theatre (even though i'm fine with it, its still as scary as hell!!)


Can anyone think/or recommend anything else?
I'm having the surgery in the UK and i wont be having a NG tube (does happy dance)
Posted 9/5/2010 6:27 PM (GMT 0)
Phone or change for those oh so expensive hospital phones. Something to read(magazines are usually easier than a novel)
Posted 9/5/2010 7:58 PM (GMT 0)
-Cell phone

-Charger

-Magazines

-Books

-Pen and paper to write notes down when dr comes in

I don't know if they do this in the UK, but my surgeon has all his patients get a nerve block (epidural).  You feel no pain for 2 days after the surgery, then he moves you on to IV pain meds.  Maybe that's an option?

Posted 9/5/2010 9:45 PM (GMT 0)

Sounds like you have a pretty good list going.  I've had one resection by laproscopy, and one open resection--both in the last year.  I was in the hospital for the same amount of time for both surgeries--3 nights and 4 days.  The recovery was different, but I wouldn't say harder with the open.  I'm pretty sure everyone gets a pain pump with resection surgeries--regardless of what kind of surgery.  The first time around I was offered an epidural for pain mgt. but opted not to get it.  The second time (open surgery) was at a different hospital and they didn't offer the epi, which was fine for me.

One thing I remember is not feeling up to doing much of anything while I was in the hospital--I.E., reading, watching t.v etc... until the day I was discharged.  I just couldn't concentrate on any of that.  The first two days are such a blur and then by the 3rd and 4th day I was preparing to go home.  So, if you forget a few items, you will still be fine.  I brought all my make-up and hair dryer etc... the first time around.  The second time there was no way I felt like worrying about any of that.  A shower was nice, but I didn't have the energy for much more.  The one item that was really nice for me was my ipod.  I had some relaxation music on there and that was really nice to listen too, plus it blocks out some of the other hospital noises--annoying roomates, iv's beeping etc..

Good luck!!

Posted 9/6/2010 4:16 AM (GMT 0)
Here are some things I thought of:
*Toilet paper!!! The stuff in the hospital is so scratchy. I always bring my own.
*low cut panties-since your incision may go pretty low, I try to bring the really low cut ones (that go just above your hairline) so it doesn't irritate the incision
*electric toothbrush if you have one, since moving a lot will hurt it's good to use electric ones since they work without you having to move so much
*headbands to keep hair out of face
*Face wipes-my face always feels dirty and it's easier than washing your face

Also, I ask for medicine to take to sleep better as I have trouble sleeping. My dr usually prescribes Ambien for me to take at night.

They will probably have you get up and move around the day after surgery. It'll hurt like he$$ but it's worth it. The more you move around, the quicker you'll feel better. Walking frequently but not a lot at a time is really good for you. It also makes the pain go away quicker!

MAG-I always forget to take pen and paper and have to have someone bring this to me...I should learn, but I don't!
Posted 9/6/2010 8:36 AM (GMT 0)
Good ideas, especially the toilet paper! My phone is always with me so its a given its coming with me. I dont think ill request anything to help me sleep cos i take an anti-depressant that knocks me out.

I'm definately going to walk as much as possible. That will be my visitor's job, to help me get up and walk.

Pen and paper, now thats a SUPER good idea.

My surgeon told me to expect a 7/10 day stay but that i *might* get out earlier. It all depends on how well i recover.
Posted 9/6/2010 10:25 AM (GMT 0)
choc, where you at that you would need to bring your own stuff? ven dry hair wash comes in the kits i have had. i do bring my own wet shampoo though cause i hate dirty hair. TV should be in the room right? usually with a VCR/DVD player underneath, phone in room , no charge for calls, gowns and PJ's provided and changed daily, etc.. oh i see your in the UK sorry.... ;0)
Posted 9/6/2010 10:31 AM (GMT 0)
well at least i wont have to worry about my insurance not coughing up! ;o)
Posted 9/6/2010 11:53 AM (GMT 0)
Randy...you get a hair dryer in your hospital? I have to bring my own...I also still bring my laptop and DVDs because they have wifi and I can entertain myself and keep in contact with people. I also still bring my own clothes (usually just t shirts and sweats or shorts) because my skin is sensitive and I get itchy wearing hospital gowns...they have a lot of seams that bother my skin. My own face wash, lotion etc. is also necessary because of my sensitive skin.

The hospital by me has "suites" which are usually saved for VIPs and hospital employees, and I got one of those in October. They have a "sitting" area with a fold out couch, mini fridge and desk area, which my mom took advantage of (she stayed the first couple nights with me because I was there for pulmonary emboli and was on strict bedrest)....oh, and all the rooms have flat screens now! They just built a new tower and all the rooms are pristine and beautiful. Besides the bed, you feel like you're in a hotel! (And...choc...my insurance pays the same if I'm in a regular room or a suite!)
Posted 9/6/2010 2:27 PM (GMT 0)
Sounds like you have gotten some really good ideas Choc. I have had two open resections myself, so I definetly agree with walking as much as you can. It will be tough at first, but keep pushing yourself. In the US they provide us things like the dry shampoo, lotion, powder, tooth brushes and toothpaste, and body soap. but I still like to bring my own.

Another thing I like is to bring a light body spray. If I am in the hospital I like to at least smell good:)

Hope your surgery leads to a long long remission. Hugs!
Posted 9/6/2010 3:02 PM (GMT 0)
I know this is kind of odd.... but when I had my surgery I started my period the same day een though it was supposed to be two weeks away. The nurses said that many times it is brought on by trauma to the body. The same thing has happened to me when I have had total bowel obstructions. It just may be me, but I always take the type of pads I usually wear and bring extra underwear.

Elizabeth
Posted 9/6/2010 5:10 PM (GMT 0)
Love this forum ! I am having open resection next Monday 13th Sept)and was just thinking about what I would need to take in and the answers are all here ! I was told to expect to be in for about 5 days. Only thing I am not sure about is how they will clean my bowel out. I have had pre op check and the nurse spoke to the surgeon and he said no Pixolax, she thought I may have an enema when I arrive on Monday - yuk - haven't had one of them since I had my kids 30 years ago. Would much rather prep at home the night before. What do you think the chances are of them washing the bowel out when they put me under ?? Don't suppose I will be that lucky. Keep an eye on the forum Chocholic, I will post and let you know how it goes when I get home (I an also in the UK).
Posted 9/6/2010 5:13 PM (GMT 0)
Missnuts even with my 2nd resection which wasn't an emergency, I didn't have to prep at all. I hear some do, but I never did. Hope that helps.
Posted 9/6/2010 5:20 PM (GMT 0)
Thanks Nanners, I will hope I don't have any. I am already on a low fibre diet and am going to switch to low residue about 3 days before to make things easier. Not really worried about op just the 24 hrs after when you feel off the planet. Once I can get up I will be ok, I know from my hysterectomy that equal amounts of walking around and resting is the best plan. Gosh now I am thinking about it I am getting nervous !
Posted 9/6/2010 6:21 PM (GMT 0)
thanks missnuts, i really hope your surgery goes well and leads to a very long remission. I will keep an eye out for your post. I hope my list has helped you alittle. I got alot of it out of a book if i'm honest.

The First Year Crohn's Disease and Ulcerative Colitis by Jill Sklar.

I think i've read it so many times i know it almost word for word. It seems to give me some comfort, that i'm not alone and i can get through it all. Course you guys here do the same!

Fingers crossed there is no prep involved, i HATE the prep. All of them, with a passion! I'll never understand how we can put men on the moon with the equivalent of a playstation, but we cant make preps taste like strawberry milkshake or chocolate ice-cream?
Posted 9/6/2010 6:49 PM (GMT 0)
I had, what ended up being, a double resection in February. I got some of the same advice and packed a lot of stuff but most of it ended up just sitting there.

IV pain pump was there when I woke up. I also had access to diludin? - some sort of FANTASTIC injected pain med. I could only have it every few hours but man, it helped so much.

Honestly, I didn't do much. I didn't wear any underwear. My incision was near my bikini line and HURT. I didn't get the catheter out until day 4. I had huge issues with bowel leakage so I laid on pads in the bed. I didn't put on PJs - it was too much trouble. I wore the hospital gown only. I brought all that stuff but it just wasn't practical.

I did bring my own toiletries but didn't get an actual shower until day 5. On day 3, I leaned over the sink and the tech washed my hair and sponge bathed me a little. It felt amazing and I didn't care that someone else was seeing my naked self.

I really mostly slept until about day 5. I would flip open a magazine and fall asleep a few minutes later. I watched TV on and off, day and night, as I dozed.

Things that were helpful: my own pillow, leg warmers and socks (it's sometimes cold!), cell phone and charger, hand lotion, some magazines. I had a friend bring me face wipes as my face was REALLY oily afterwards. Something about the meds I was on. I also brushed my teeth in the bed with the little spit cup thing. I wore a baseball cap until I got a shower as my hair was super oily, too. I brought my laptop and didn't drag it out until the day before I went home. Just didn't feel like it.

Things that perked me up: lots of homemade get well stuff. I work with children and I got TONS of cards, garlands, signs, etc that they made. My husband decorated the room with it all and it brought a smile to my face (and every nurse/doctor that came in!).

I stayed in 8 nights. I had a rough go of it, maybe that was why I didn't use 20% of the stuff I brought with me. I put on PJ pants and underwear the morning I went home and it was not comfortable but better than mooning the hospital on the way out =)

I'm sorry you have to wait so long for yours but I hope it goes really well.

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