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08-05-2012, 08:28 AM   #1
Jaano711
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Just waiting now

Hi
I haven't posted for a few weeks, and fear that the last time I did I was not Ina very good place. I have now come to terms with the fact that I am losing my bum and will no longer need to rush like a mad woman with kids in tow trying to find a loo.

After several hiccups, the first being my surgeon of the last 5 years went AWOL and I had to sources new one. Luckily his locum was very informative and has made me feel a little less anxious about the whole deal. Unfortunately, she didn't give me the second opinion I was hoping for, so I am booked in and having this whole thing done on Friday 17 August.

I have read a lot of your posts and wish to say thank you. I am now starting to look at the operation as my liberation and am looking forward to post recovery when I can do all those things I have been to scared to do for years. Like long bike rides not routed past all available public toilets and long walks, on e again all based around smelly toilet blocks.

My husband and I have had lots of really good discussions about all that involved and he is so loving and supportive that I cannot believe how lucky I am. I have been very honest and upfront with our three children and they know what is happening and what the plan is. Unfortunately we live 4.5 hours from where I need to go for the surgery so they will be having there grand parents come across from interstate to stay with them.

I know that I am going to have heaps of questions when I wake up from the op, but would really like to know if there is anything this side of the op that I should know or be doing?

Once again thanks to you all for your wealth of information and advice that you offer.

Thank Janette
08-05-2012, 08:48 AM   #2
KazT17
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Hi Janette,

What op are you having done? I had a colectomy last year and then a proctectomy this ( when I lost my bum lol). I am so pleased to be 'free' and unrestricted. I hope you feel the same very soon. My hubby was fantastic too and is delighted that I am through it all. Ask me anything you need to know.

Love, Kaz xxx
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08-05-2012, 08:53 AM   #3
Susan2
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Hi Janette

As to what to do this side of the op, the most important things are to get your mind and body into as best shape as possible. A positive outlook does wonders and you are obviously already well on the way to acceptance of your new situation. But also be prepared for some bumps along the way - it sometimes takes a while for things to settle down and for you to find what suits you best in the way of routines and equipment.

And give your body the best chance possible to heal quickly. Eat well and get lots of sleep, if you can, before the op.

It sounds as though you have done very well already in working with your husband and children to prepare you all for this change.

Please let us know how things are going and remember that we will be here, too, when you wake up.
08-05-2012, 08:55 AM   #4
Jaano711
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Hi Kaz
Thanks for that. Inthe pastI have bad an extended right hemi colectomy, a laparoscopic small bowel resection and another open resection, all due to strictures and fistulas. This time they're going to remove what I have remaing of my colon as well as all anus rectum etc. it will be open surgery due to adhesions etc.unsure as to how they go about removing the back end. Do they take it out from the back??? Ok sothey must flip you over to get to it. All a bit confusing. I am a radiographer/ sonographer but turn into Jo public when it comes to things they will be doing with me.. Probably avoid it cause it's to close to home. Just babbling now sorry..
08-05-2012, 09:09 AM   #5
KazT17
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I had my op as laparoscopically assisted, so partially laparoscopic and the rest open. It sounds worse than it is, the removal of the rectum and anus. The wound was the full length of my bum, and sewn sort of zig zag so that it would heal giving as much flexibility as possible. Apart from having no hole ( sorry tmi lol) you would never know now. It was uncomfortable, but bearable, I had a pressure cushion which was great. I don't know if I was just lucky but the stitches came out at week 3 and I have been fine ever since. Better than fine actually! Not really sure how they did it, and not sure I want to know really. I also had an epidural this last op, which was fantastic for pain relief. I was home on day 4 on paracetamol only, cos anything else makes me sick.

Your positive attitude helps, and like you, I looked at my kids and aimed to be there for them.

Let us know how it goes xxx
08-05-2012, 09:57 AM   #6
CheerBear12
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Hi Jeano117, I hope it goes well for you, good luck and keep us posted on how your getting on. Something to luck forward too...... Sigh I will be getting this done as well at some point argh!!!! Thinking of you and your family xx
08-06-2012, 12:49 PM   #7
Terriernut
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I think you going in with a positive mind set is the most important thing you can do! And I think you have that.

It would be great if you could meet with the stoma nurses before hand. And if you could get some samples to play with before as well. Michelle (Misty Eyed) got a fake stoma even!

Be as healthy as possible prior to the surgery so you will heal faster. Lots of protein. Oh, and this is going to sound ridiculous, but get waxed. You will NOT be bending over for a good while! (that goes for most abdominal surgery anyway doesnt it!)

Good luck sweet heart!
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08-08-2012, 06:38 AM   #8
Jaano711
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Thanks Misty
Have booked in for leg wax. Getting a bit real now, had a call from surgeon today and need to head to Adelaide a day earlier to see stoma nurse. One more day away from the kids. Makes me a little sad as my plans have to be changed, but will be good to meet stoma nurse, may help calm my nerves.

Will let you know how I go when I'm back on deck .
08-08-2012, 09:23 AM   #9
glum chump
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Hi Jaano711

Meeting the stoma nurse not only made things really 'real' for me, but it also helped calm my nerves, so I hope that that happens for you as well. Most of the stoma nurses are so informative, that it's nice to have a viewpoint other than the surgeon and GI.

On a shallow note, in addition to getting your legs waxed, I would also suggest getting a haircut/dye and to give yourself a good pedicure (like Misty said, bending will be an issue). I had some complications after surgery and wasn't able to get to a hairdresser for a long time and I felt dishevelled with my hair growing out.

Hope it all goes swimmingly in Adelaide.

Kismet
08-08-2012, 09:50 AM   #10
Terriernut
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http://www.crohnsforum.com/showthread.php?t=22958

Heres a list of stuff to do before surgery...
08-12-2012, 09:24 PM   #11
Jaano711
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Ok starting to get a bit anxious now. Surgery is Friday and feeling quite teary the last couple of days. Just getting nervous.
08-13-2012, 01:02 AM   #12
Terriernut
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What you are feeling is very NORMAL. Just do what you can to keep occupied and prepared. It's all you can do.
08-13-2012, 01:20 AM   #13
PattyLynn
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Jaano, you have already been given such great advice that I really can't add anything there. I can tell you that when I had my rectum removed, it healed very quickly. They removed my colon and rectum all at the same time so it was done from the inside. The stitches in my butt were all internal and I really didn't experience hardly any pain afterwards. Maybe I am one of the lucky ones - here's hoping you are too!! Good luck with the surgery and make sure you update us once you are back home.
xx
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DX - Crohn's Disease 1991
Current meds: Azathioprine, Remicade, Pariet, Percocet, Effexor
Past meds: too many to remember! But a super long stint on Prednisone that made me gain 40lbs - I'll never do that again!
Surgeries: Resection 1992; Ileostomy in 2000; Proctectomy 2004; 11 surgeries from 2000-2007 for various problems associated with Crohn's (resections, prolapses, hernias; twisting of the intestine, etc.); Surgery #13 is imminent to repair a fistula and possibly do another resection
08-22-2012, 01:07 AM   #14
Jaano711
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What have I done. Had a disastrous day. Have spent most of the last day covered in shit. Really not coping. Don't think I can do this.
08-22-2012, 01:32 AM   #15
PattyLynn
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Jaano honey, did you have the surgery? What's happened to make you feel so down? Reading your post, I am very concerned! You CAN make it and we are all here to help. Please let me know what you mean by "what have I done"
Big hugs to you!
Trish
08-22-2012, 02:32 AM   #16
Jaano711
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Had surgery on Friday. Bum gone and a colostomy kinda of stoma, bits of all remaining bowel hooked to colostomy. It has been filling rapidly with both air and poop and has leaked, exploded and been tipped all over me in a series of separate events today. Just not coping and feel like its never going to do the right thing.. The amount it produces is just depressing. I will never be able to leave the house as it fills up so quickly and constantly. I didn't think things could get worse than pre op but now I am just sad.
08-22-2012, 02:47 AM   #17
Terriernut
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A new stoma is like a volcano when it starts up! And I can promise you that it will NOT remain that way! There is a positive in this and that is the fact that your bowels are working. Some people have trouble with them starting up again.

It will regulate and improve! Sounds like the nurses haven't been doing so good. Has the stoma nurse been around? She is the one who can sort a lot of this out for you. I know things will get better, hang in there!
08-22-2012, 03:19 AM   #18
KazT17
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Hi Janette, so you have a colostomy not an ileostomy?

Please don't panic, at first there is a lot of output and lots of noise!! It slows down and you will learn what to eat, and what to avoid, and eventually get through the night too.

I hope you have just had a bad day and things are starting to improve.

Keep positive, you will get there.

Love Kaz xxx
08-22-2012, 03:25 AM   #19
Samboi
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Hang in there Jaano.
It takes a few months for it to settle. At first it just goes and goes and goes. And it springs leaks. Mine kept lifting on the LHS.
It takes awhile to get used to.
Give yourself time to adjust. Early days yet.
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08-22-2012, 05:15 AM   #20
Jaano711
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Think it might just be the night for a good sook and some pain meds..

I know let's put it all into perspective but unfortunately at the moment perspective a bit skewed to 'poor me'. I will get through this, I have to but, it's gonna take time, a whole lot of patience and time. To do it to do it to do it to do it right. I think life may just become a big gugrly explosive shitty second rate musical.. Must go and try to sleep with exploding.

About the stoma nurses, have had a brilliant one who only works mon and tues, and the one who led today's comedy of errors was more Basil Fawlty than confidence building. Step 1 remove bag (preferably emptied in jug and not all over freshly showered patient in clean bed. Also try to avoid getting poop all over large abdomen wound so that it goes under dressing and pools in belly button ) probably good idea at this point not to leave naked patient on bed covered in poo and surrounded by cloud of flatulence)with door open and visiting hours starting. Just grateful it wasn't my family who accidentally walked in on me. Next step, I think is to clean and dry area around stoma, rather than forget to, and then apparently it is helpful to hold bag in position for a short while to help it adhere and ensure it has stuck and sealed. As a result bag not fixed in place properly and explodes whilst family and work colleague in room with me. Did I mention the stoma nurse prancing back in mid work visitor and discussing the pros and cons of different bag sizes. Just not really ready to go there with anyone outside of family and immediate small group of close friends. Now I will have to have that conversation at work way before I was planning to.

Really if I was given the option today of getting old bum back im sure I would take it and not look back. But not an option so apparently have to hope it does get better and definitely chose stoma nurse carefully.
08-22-2012, 05:31 AM   #21
Samboi
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Oh god - that is like a bad comedy show.
I know you'll laugh about it in six months. But not today.
And reminds me as to why I refuse visitors in hospital!!

I know it sounds trite - but it does get better.
It's taken me over six months for me to be ok with mine - and I begged for it.
And it's good to have a sook about it all.
I've wept hours and days over all that has happened.
There were plenty of times I wanted to give up.
But I'm still here fighting.
Hang in there. You will get through it.
08-22-2012, 05:56 AM   #22
KazT17
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Oh what a nightmare - my stoma nurse was awful too. Couldn't wait to get home and in control myself. As soon as your able to get up, and change the bag standing up, you will feel so much better about things. Stay positive, things will get better. You will be free to be out and about with your kids before long xxx
08-22-2012, 08:38 AM   #23
Terriernut
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That is by far the worst I've ever heard! No wonder you are in a state!

The sooner you are up and about and able to do your own changing and be in control, the better you will be.

I swear things will get better. After that catastrophe, you certainly will need them to get better! On Monday when the GOOD stoma nurse comes, you need to explain what happened. By Monday, I hope you can get up and about and empty and change the bag yourself. If not...I hope the good stoma nurse will make certain you can do it on your own, even under supervision.

Major hugs mate!
08-22-2012, 09:47 AM   #24
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Fourth day post surgery, I had just messed all over the bathroom floor trying to empty my bag and called for someone to help clear it up, sat on the bed and then sprung a leak on the side of the bag. I hadn't tried to change one by myself yet at that point and so had to call for someone else to come and help me change the bag. I've got a bathroom floor covered in poo and now poo trickling on me... in comes the hospital clergy staff to pray for me----I yelled at them to get out! As they were leaving, they asked if there was a better time when they could come back... I just glared at them.

It was definitely not funny at the time, but yes, I do laugh about it now.

Hang in there! Let yourself be sad for a spell. You are in the middle of a HUGE adjustment, so don't be hard on yourself. It will all come together.
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08-22-2012, 10:32 AM   #25
CheerBear12
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Omg no wonder your in such a state luckily mine were lovely in hospital. There was only one that made my stoma bleed like crazy the bag was full of blood that was after she changed it tho. I must be one of the lucky ones to have nice stoma nurses in hospital. Sorry you are having such a terrible time. Take care and keep us posted big hugs xxxx
08-23-2012, 04:25 AM   #26
Jaano711
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Just reporting in that today has been somewhat of an improvement. I have managed to not end up covered in it. Nearly had a large lava leak was mm off breaking out. Left hand side, managed to get it emptied and stoma nurse was summonsed just in time. Today I was more in control of basil Fawlty the stoma nurse. I told her what I wanted to know, asked her to try a new bag as had completely lost faith in the one that kept leaking ( why if there are heaps of options do they keep trying to push the same ones over and over even if they are not appropriate) basil wanted me to wear a belt with the leaky bag. I said no as abdo sore and uncomfortable and don't think I could tolerate it. At least. She was listening to me today.
I have let up on being so tough on myself and just allow myself to start healing internally and externally. For now I will just breath and give myself credit for any small steps I make and not beat myself up over anything that doesn't go to plan. Let's face Mt Vesuvius and I are going to be together for a long time..
08-23-2012, 04:30 AM   #27
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Lol basil Fawlty glad your in more control today let's hope things get a little easier each day for you. Keep us posted xx
08-23-2012, 05:48 AM   #28
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Aha. Sounds like a better day today.
Some days are just going to be disasters.
They get less and less the more you get used to your new equipment.
Sounds like you've got a lively one too!!
08-23-2012, 07:34 PM   #29
Jaano711
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Bad abdo pain and fever today. Feel like crap. Waiting for bloods to come back to see what happens next. Hopefully only a little blip
08-23-2012, 08:07 PM   #30
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Hi Janette, I had this. It turned out to be one of the anti sickness drugs was causing my small bowel to spasm. It was agony. They changed to ondancetron (sp ?) which prevents sickness without affecting the bowel.

Hope things are settling down with the stoma. If I had remembered how much output there was at the beginning I would have told you, but it just goes to show that it doesn't last. It took a few months though.

Keep focused on your kids, I needed to be well for mine, just like you do for yours. I would never go back, even if I could.

Hope you have a better day,

Love Kaz xxx
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