I'm getting surgery, need information

[danman]

Hi folks,
I've posted this in another thread, but I've had no responses. I thought I'd try my luck with a thread of it's own.

I'm scheduled to go in for surgery (colostomy) in about 3 weeks time.
My consultant is doing this in a roundabout way, so I won't have to wait for a surgeons consultation, scans and more consultations.

But the upshot of this is, I don't have much information available to me. Normally I could talk to the surgeon and get whatever information I require at the consultation. Unfortunately I won't be able to talk to him until I'm admitted to hospital.

I've been told that I'm to get a colostomy bag for a few months, to allow the bowel to rest, then it is to be reversed.
I was also told that the surgery will be performed by "micro-surgery", so the scaring will be minimal.
This is all the information I have.

Has anyone out there had this type of surgery?
How long were you in hospital?
What was the recovery time after surgery?
How long were you out of work?
How has the colostomy bag effected your life? Can you still go to the gym or swimming?

I'm starting to get anxious about the aftermath of the surgery, and the lack of information is really starting to take it's toll.

Any information will be gratefully appreciated.

 

[merrywidow]

i have a illestomy, its the same as colonostomy but my pouch is on the right hand side. yours will be on the left.
i was meant tto be in hospital for 10 days, but got MRSA so stayed for 6 weeks.
recovery is not to bad, just dont lift anything heavy for 3 months.
i swim and we went swimmimg with the dolphins last year. but you will need to change your pouch after bath/shower as the material takes ages to dry.
personally i treated having the operation like having a new baby in the house. when its very new you will be up in the night to change or empty, ad you will get used to when is a good time to change he pouch i.e when the stoma is not active is the best time!!! my best time is straight after breakfast.
also have patient!!! you cant rush a change.
make sure you have everything ready BEFORE you take the pouch off. that was a lesson i soon learnt.
take advice from the stoma nurse, she has heard all the questions before and wont get embarressed.
yes you can still have sex, but the bag can be a turn off to start with but you soon get used to it.
once your body settles you can do anything you did before your operation.
hope it all goes well.
sharon xx

 

[danman]

Thanks for that Sharon.

I've had the last 20 years to get ready for this, but I'm still dreading it.

Sorry to hear about your MRSA.:ymad: :voodoo:

Did you have the micro-surgery, or was it the ordinary surgery?

I actually hadn't considered sex:ybatty: , But that is part of the reason I'm getting the op. Not for sex, but because the fistulea are effecting my fertility, and wifey wants another baby now!!!!:eek2:

 

[merrywidow]

dan, please be warned, that this kind of operation can affect your sex drive, i.e your dont want sex. this happened to me but i think some of it was in my mind. i thought i wasnt sexy anymore, so didnt want sex. i am now trying for another child, but things aint happening. i will only try until xmas though as i will be 40 in september and i dont want to be pregnant and forty.
if i knew now what i knew when i was younger i wouldve had my pouch years ago. it has given freedom i couldnt imagine, i can go shopping without planning the trip around the nearest loos.
i had open surgery, and it was this wound where the mrsa got in. but i am convince it was tea lady that passed it on, as 3 of the 4 woman in my bay got mrsa and then the other people got it. nurses didnt pass it on as they only care for 4 people or one bay. its the tea lady tha goes from bay to bay.
but on a postive note, nw i have mrsa in my system, if i have to go into hospital i always have a side ward. a bedroom all to myself. no one snoring, no one shouting in the night and only your machines that beep. bliss. if you need to know anything else just shout. shron xx

 

[danman]

To be honest Sharon, My sex drive is nonexistant at the moment, I'm in too much pain in that area.

I never thought there was an up side to MRSA:eek2:

 

[danman]

Thanks Pen,
I'm in the middle of writing a history of my illness, which I'll post in the my story forum. It's actually quite enlightening for me to get these things off my chest ofter all these years.

 

[Guest]

hey Danman.. couple of thoughts, just because you can't get to talk to the consultant before your admission, doesn't mean you can't talk to someone else at the hospital in the meantime. one port of call would be the Stoma Nurse (already mentioned by Sharon), and even taking a wander up to the gastro surgical ward and asking to have a chat with a senior nurse or registrar - you may find a lot of your questions and worries can be addressed by the time you go in.

also, i found this - it's UK based, and may be helpful... http://www.colostomyassociation.org.uk/

 

[BWS1982]

Unfortunately my own demon (of several) is what many consider vanity. As someone who strives to have the build of someone like Vin Diesel one day, I just can't fathom having a sack O shite hanging on me. I know this sounds vain, but it's like working up to purchase a completely restored Mustang, and then have a massive dent and scratch along the side, and forcing yourself to think "oh well, at least I still have my car". It's very emotional for me, but that's just how I am. I have no clue what my future brings, and every time I look into a bag, I get upset and stop looking.

Oddly, my gf is mostly for it because she wants me to stop suffering and living my life around a crapping schedule. I can't work, I can't go here, go there, I have to live around Crohns, and she wants an end to that. I do too, but I'm the one with an external rectum to worry about, and the one with such an abnormal concern on activity level and appearance. double

 

[jed]

my surgery was a little different, but i''ll answer anyways

Has anyone out there had this type of surgery? not exactly, mine was a sub-total collectomy (large intestine removed, small intestine connected to colon. was a possibility for me to be bagged up for a while, but my colon was better than they first thought so they joined me up straight away)

How long were you in hospital? 6 days

What was the recovery time after surgery? straight after? first day is not remembered due to drugs, second and third day sucked ar*e due to having a nasal gastric tube inserted (worst worst worst thing ever!!!!!) day 4 onwards was fun, no probs what so ever.

How long were you out of work? i took 2 weeks at my parents to recover (with room service, then had a further 4 weeks off to let it heal properly, besides, who wants to go back to work????? LOL.

How has the colostomy bag effected your life? Can you still go to the gym or swimming? this i cant answer.

dont be afraid of surgery, might be the best thing you ever do.

and benson, i'm sure i would be a bit self conscience if i got bagged as well, but all i've got is an awesome scar from chest to groin. i love it, all my friends love it. scars are cool

 

[BWS1982]

Jed you are the first to make me chuckle on a matter such as this, instead of freak out. Thank you.

 

[jed]

glad to be of service my friend

the bag scares the hell out of me as well, so does the imuran cancer, the methotrexate sperm damage, and all the other crap that comes along with this fun disease. it really does scare me. but in the end, surgery has so far been my greatest thing out of all of it.

i know its kinda scarey, but its better than dying.

 

[RHOV]

eek. that's intense. how many staples? and when was this?

i like how they kind of skirted around your belly button, though.

 

[jed]

think it was about 40 staples (count if you want to) they were weird coming out

this was 13 june last year, about 6 months after first diagnosis. poor jed went downhill quickly suppose thats what you get when you dont visit crohforums.com to realise how dangerous this disease can be if you dont look after yourself properly.... oopsie


and yes, i'm pleased they left my belly button alone!

 

[Agent X20]

Do you think they got the opposite way round your belly button if you're in the northern hemisphere?

 

[BWS1982]

Jed had a C section!

Funny one Agent!

 

[danman]

hey Danman.. couple of thoughts, just because you can't get to talk to the consultant before your admission, doesn't mean you can't talk to someone else at the hospital in the meantime. one port of call would be the Stoma Nurse (already mentioned by Sharon), and even taking a wander up to the gastro surgical ward and asking to have a chat with a senior nurse or registrar - you may find a lot of your questions and worries can be addressed by the time you go in.

also, i found this - it's UK based, and may be helpful... http://www.colostomyassociation.org.uk/

Thanks for that Dingbat.
Unfortunately my hospital is 4 hours drive away. It's a long story but, I'm in the middle of writing it now for the my story thread.

My wife was talking to a neighbour in a local shop yesterday and she's a nurse in a local hospital. She works in the recovery ward after surgery.
She's invited me to call over to her and discuss any concerns I might have.
The way her shifts are working this week, I'll not get over to her until next Monday, but at least I'll be able to get some information.

 

[merrywidow]

glad to be of service my friend

the bag scares the hell out of me as well, so does the imuran cancer, the methotrexate sperm damage, and all the other crap that comes along with this fun disease. it really does scare me. but in the end, surgery has so far been my greatest thing out of all of it.

i know its kinda scarey, but its better than dying.

hey thats not fair, i had 47 staples and they took my belly butoon away my niece wanted some staples as well, she was going through a rebelious stage at that time and had pierced everything then.
i did keep some of the staples though and like you have pics, though my wound opened up so i dont think people would want to see them.


but just to say, i am glad when the wound eventually healled as the dressing would be stuck on my bikini line!!! ouch.
sharon xx

 

[jed]

bah merry, i just counted, 44 in mine, you beat me by 3

 

[merrywidow]

your staples never went near your groin either, so you didnt have the pain of the nurses pulling of the dressings!!!! sharon xx

 

[Guest]

ok.. you lot have made me revisit memories of that particular ripping 'pleasure' when they take off the dressing from your almost rude and extremely sensitive parts. ouch! and then, as if that torture wasn't bad enough, you get the staple remover trying to pull and wiggle the little blighters out, which feel so at home in your skin, they really don't want to leave.

ah... such fond memories

 

[merrywidow]

dan sorry if we have put you off, but i think you said your having keyhole surgery? if so you wont have staples, so wont be able to "show off" your wound. lol sharon xx

 

[danman]

I've got other wounds I could show off, and did on a regular basis as a child, but I think this is a family website, so I'll be keeping them to my self

Thanks for all you input folks. It's nice to know that I'm not alone in my situation, even if it means you all suffered too

 

[merrywidow]

oh dan, one word of warning, when you have the prep, take a good mag or book and stay in the loo for about a hour or so!!!!! sharon xx

 

[danman]

oh dan, one word of warning, when you have the prep, take a good mag or book and stay in the loo for about a hour or so!!!!! sharon xx

don't worry Sharon, I've had the prep on many, many occasions.
Horrible, horrible stuff.

I remember once taking the prep, half at night and half the next morning as I was told and a few hours later going on the tube in London to go for my colonoscopy.
I had to get off and try to convince a cafe to let me in to use the loo.
wasn't a plesent day

 

[My Butt Hurts]

... Nice Belly button Jeddypoo!

Is that the same Jeddypoo bellybutton that DingBat is going to eat cranberries out of??
(she changed it from cheeseburgers, I believe)


Good luck with the surgery danman. I'm sure you'll fill us in when it's done.

 

[Isla]

No Jed tried to change it to a cheesburger, but he didn't think it would work very well. She originally wanted cranberries, but he has a fruit and veggie aversion.

>Nothing gets past me!!< cept important things of course!

 

[Agent X20]

Cheeseburgers? Cranberries?
I thought frosting was the preferred choice for that sort of thing?

 

[Natasha]

Wow, I've got crohns for 9yrs now, surgery free. Its been considered on more than one occasion but I never gave in to actually having it. You guys talk bout it so calmly and crack jokes likes its normal. I wish I was this open to the thought.

 

[jed]

i think the only reason i can talk about it calmly about it is cause it did save my life.
i really dont think i would be here if i hadn't had it.

and what ever doesnt kill you, only makes you stronger (yeah, old cliche, but its rings true for me)

 

[merrywidow]

hear hear jed. sharon xx

 

[danman]

Hi Natasha,
I'd call it "Gallows humour".

If we didn't laugh.....

 

[MINI Cooper]

My scar looks similar to yours. But mine was done because at the time it
was an 'exploratory surgery'. They ended up taking out a ruptured appendix.
Guess the Crohn's did it in. I'm really hoping to not have another surgery.
it's not fun. But seems like a lot of you have had it done for Crohn's.
This is kind of unsettling to me.

 

[danman]

I'm lucky Mini, I've gone 20 years without invasive surgery. Not everyone needs it.