06-28-2006, 01:14 PM   #1

some of you have had surgeries and i was wondering how it went for you all post op and days after and what its like to keep up a bag. I recently went to the doc and told him that im sick of dealing with this because i constantly am having problems so I told him just to take it out lol Sounds bad but I was having a bad morning at the time and now thinking about it im not so sure i wanna do this. He did say I qualify for surgery to have part removed or whatever they are gonna do to me and he's going to check it all out just to see if it has spread to more than just the area its in then he could send me to Toronto for surgery. So like i said I'm not to sure I will go this route and keep trying what I can to keep myself in remission, but if you all have experiences to share it be great to hear them
06-28-2006, 02:05 PM   #2
As awful as surgery sounds, I wouldn't trade my op for anything! I'm about 8 weeks post-op, and it's been a complete turn around in my life. I went from always sick, tired, hurting, and underweight to lively, vibrant, hungry and back to a more relatively normal weight.

It seems to me that most people here tend to wrestle with the decision to have surgery. I wasn't given that option. By the time I got my diagnosis, my docs all said "go to surgery. go directly to surgery. do not pass go, do not collect $200." So I did. Best thing I've ever done for myself. I'm no longer suffering and bent over doubled in pain.

The surgery was just the beginning of my treatment. I'm now pursuing supplements, acupuncture, and natural treatment. Am hoping to be off all my meds relatively soon. That approach isn't right for everyone, but I feel it's right for me.

I do hope that you find the right approach for you soon and that it brings you sustained relief!

ETA: The few days following surgery weren't all that bad for me. Once they hooked my epidural back up, I was completely pain free. As long as I walked a lot down the halls of the hospital, all was good. I did have a good bit of very painful gas/bloating for the first week, but once my gut got flowing again, I've been unbloated ever since!!!! (after having been full-on bloated for 1-1.5 years) Ya just can't lift a whole lot of stuff for a while, but other than that, I had a really easy time. I wish you as easy a recovery as I had!!

Last edited by meowsie; 06-28-2006 at 02:09 PM.
06-28-2006, 06:33 PM   #3
mikeyarmo's Avatar
Join Date: Feb 2006
Location: Toronto, Ontario
I will try and write some more on this soon (too tired now!), but here are some quick points:

-Surgery is permanent/a final decision, so make sure that is what you want
-I am VERY HAPPY with my surgery, and it has allowed me to feel better than I have ever felt while diagnosed
-After surgery WALK A LOT! Try to do more than the minimum the doc's/nurses tell you to do. This will help speed up your recovery, and can get you drinking/eating sooner.
-Pain was not bad at all for me. After the first night I barely used the morphine pump, as using it can make the recovery go slower. For me dealing with a day and a half of pain at the beginning allowed me to have a fast recovery and much less pain afterwards
-Gas pain was WORSE than the pain I had after surgery. This will occur after drinking/eating initially. The only way and best way to get rid of it is to walk. I made the mistake at the beginning of just trying to wait it out in bed, but it did not help and was not controllable as the morphine does not help it. Even if it was pretty bad, when I walked it would help get rid of it faster.
-If you are going to Toronto I highly suggest Mount Sinai Hospital (www.mtsinai.on.ca). I had my surgery done there and there are several amazing surgeons there.

If you have any specific questions about anything just ask.
06-28-2006, 09:55 PM   #4
Join Date: Jun 2006
it has been about 5 months since my last surgery placing my bag on for the second time, you learn to deal with it quick. everyday i am accepting the bag better. the hardest part right now is the hole relationship and going out thing. but asfar as how i feel, i feel like a new person, my CD is as bad as a person can have it, ive had every med and treatment in the book and now iam not taking and ive weighed as little as 75lbs and now iam pushing 140, iam always eating.. but all in all iam better than ever.. if any direct questions please ask me
06-29-2006, 05:51 AM   #5
I didnt have a choice for my surgery.I was diagnosed with Undetermined IBD after a month in hospital and the bag operation was done.Was all new to me the bag and the crohns thing.Was a bit of a blur as i was wasted alot before the operation on morphine alot for the pain.

I had a bit of a nitemare recovering after the operation as the epidural didnt work and they had to monitor me every 30 mins and keep giving me more morphine but generally a few days after the op i was feeling alot better and the main nitemare was over.Never had so much tubes in me lol.The butt and privates tubes and the drip trolley.The physiotherapy afters was funny trying to walk with all my tubes and trolley etc.I used the morphine button on the machine way too much but i thought id take advantage and try and be a happy wasted dude for as long as possible lol.

I was out of hospital about 10 days after the operation and i moved home with my mum and her partner for about a month until i was able to look after myself again.

The upkeep of the bag for me isnt so bad.I use a 2-piece system and i unclick the bag and change it about 3 times a day..Change the flange roughly every 3 days or more if im working out or doing something sweaty.I like the feel of a new baggie on me and its free as i think all baggies in the uk have a Prescription Charges exemption certificate.

If i had the choice i would try everything before the bag op but its different for everyone and i think its a pretty big deal getting it done.What with the body image and having a new friend coming outa your tummy is a bit alien like experience for me when i 1st had it.I used to look at it move about a little after the operation when changing it lol with my brother and he asked lots of questions about how it felt.

I can only share my experience but anyone who has any ???s pm me please.
I would of tried lots of diets and alternative treatments if i where diagnosed sooner.

Since the baggie op ive had about 5 butt minor surgeries for my fistula.Im usually out that evening or nite if the ops during the day or i have a stay for 1 nite.Longest stay was for 3 days when the bum was pretty bad.
06-30-2006, 04:21 PM   #6
Hey Jonny,

I think that if you were to decide to have surgery done, being in Toronto would be one of the best places on this earth. I believe the doctor's are very well educated, responsible and would take very good care of you.
They may even have a few different and new ways of treating your condition.

06-30-2006, 05:05 PM   #7
due to my diasnosis and 1st op being an emergancy, i cant begin to understand and imagine what medication and years of suffering you have been through.
but from my research life is healthier with a bag xx my ops have been good recoveries. Having a stoma takes time to get used to but i have a healthy life and i have learned to live with it
06-30-2006, 06:18 PM   #8
Kbear said:
Hey Jonny,

I think that if you were to decide to have surgery done, being in Toronto would be one of the best places on this earth. I believe the doctor's are very well educated, responsible and would take very good care of you.
They may even have a few different and new ways of treating your condition.


Thanx K its good to know that the docs there would give me other options mabye.I may even look into seeing someone while im out there laters..By the way Happy CANADA DAY..Im sure your have fun.For the 1st of July of course..Saturday!!!

Last edited by Jonny; 06-30-2006 at 06:38 PM.
07-03-2006, 12:10 AM   #9
I'm thinking i may go for the surgery after the doc does all the scopes and junk, just cause there isnt anything left for me to try and I don't like the meth and the remicade just gave me a bad reaction..oh well hopefully by september i can get it done.
07-04-2006, 09:28 AM   #10
good luck Sparrow, its a big decision, and sounds like your on the path that feels right for you. let us know what you decide to do.

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