It’s Happening! Advice leading up to surgery?

So I have just met with my surgeon. The decision has been made. I am getting a continent ileostomy (K Pouch) and proctectomy (removal of rectum) on Saturday 16 February 2019. We will have to come down to Melbourne a week prior to meet with a number of health professionals, pain specialist, psychiatrist, surgeons, stoma nurse etc. And we will be down here for 6-7 weeks if everything goes smoothly. My head is currently spinning but I believe I'm making the best decision for my quality of life. IT'S HAPPENING!  Any advice leading up to the surgery?524A0F43-B9F1-4A34-AB76-D80B370E00AF

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If at all possible I would recommend to try and get in shape by walking/running. The better shape your body is in the better it will tolerate the operation. Do no take this operation lightly, it is MAJOR and the recovery is long and sometimes difficult. Your body will need at least 2-3 months of recovery time.

congrats!!  a couple of suggestions

--i concur w ray about getting in shape, or if you are to stay in shape.  i was 68 when i had mine and being in shape made a big difference.

--although you will be gone from home for quite some time i suggest preparing and freezing pureed veggies and/or soups 

--re read what other k pouchers have written and questioned on this site.  esp. sharon's posts.  ask or talk, we will answer or listen.

--that's fantastic that you are meeting with other health professionals before hand.  also a nutritionist, i hope.  if any of them have questions invite them to our site.  a question i'd ask of the nutritionist is what foods are digestible and what ones aren't.  the reason being is that corn and peas and mushrooms aren't--among others--and they clog up the catheter.  because Australia lacks the experience that person isn't going to know all of the restrictions.  if your doctor was trained in the us, then perhaps the nutritionist and stoma nurse also have contact with that doc's staff.

--you are positive and that makes a big difference!

--and we are here for you because we understand what you are going through.  friends and family can't be expected to fully understand.  we are family! 

--keep us posted.  janet

JLH posted:

congrats!!  a couple of suggestions

--i concur w ray about getting in shape, or if you are to stay in shape.  i was 68 when i had mine and being in shape made a big difference.

--although you will be gone from home for quite some time i suggest preparing and freezing pureed veggies and/or soups 

--re read what other k pouchers have written and questioned on this site.  esp. sharon's posts.  ask or talk, we will answer or listen.

--that's fantastic that you are meeting with other health professionals before hand.  also a nutritionist, i hope.  if any of them have questions invite them to our site.  a question i'd ask of the nutritionist is what foods are digestible and what ones aren't.  the reason being is that corn and peas and mushrooms aren't--among others--and they clog up the catheter.  because Australia lacks the experience that person isn't going to know all of the restrictions.  if your doctor was trained in the us, then perhaps the nutritionist and stoma nurse also have contact with that doc's staff.

--you are positive and that makes a big difference!

--and we are here for you because we understand what you are going through.  friends and family can't be expected to fully understand.  we are family! 

--keep us posted.  janet

Thank you so much.  How do I find Sharon’s posts specifically?

There might be a way to find sharon’s posts, but I’m not aware of how to do so. What I was thinking was Consciously looking for hers when you read through the various categories. I found it helpful to re-read all the posts before my surgery.   there are many good comments by a variety of people. j

I think when you log in go to the top of the page there are 3 lines on the left. Click on that then go to search. You will need her exact user name because I just searched on 'Sharon' and got a number of Sharons. Another possibility is to go to members. That will be a bit more tedious since there are over 13,000 members. But I think if you have her exact user name and go to search that might work better. Good luck. Mary

LadyTay97 posted:

I think when you log in go to the top of the page there are 3 lines on the left. Click on that then go to search. You will need her exact user name because I just searched on 'Sharon' and got a number of Sharons. Another possibility is to go to members. That will be a bit more tedious since there are over 13,000 members. But I think if you have her exact user name and go to search that might work better. Good luck. Mary

LadyTay97 posted:

I think when you log in go to the top of the page there are 3 lines on the left. Click on that then go to search. You will need her exact user name because I just searched on 'Sharon' and got a number of Sharons. Another possibility is to go to members. That will be a bit more tedious since there are over 13,000 members. But I think if you have her exact user name and go to search that might work better. Good luck. Mary

JLH posted:

There might be a way to find sharon’s posts, but I’m not aware of how to do so. What I was thinking was Consciously looking for hers when you read through the various categories. I found it helpful to re-read all the posts before my surgery.   there are many good comments by a variety of people. j

JLH posted:

There might be a way to find sharon’s posts, but I’m not aware of how to do so. What I was thinking was Consciously looking for hers when you read through the various categories. I found it helpful to re-read all the posts before my surgery.   there are many good comments by a variety of people. j

JLH posted:

There might be a way to find sharon’s posts, but I’m not aware of how to do so. What I was thinking was Consciously looking for hers when you read through the various categories. I found it helpful to re-read all the posts before my surgery.   there are many good comments by a variety of people. j

JLH posted:

There might be a way to find sharon’s posts, but I’m not aware of how to do so. What I was thinking was Consciously looking for hers when you read through the various categories. I found it helpful to re-read all the posts before my surgery.   there are many good comments by a variety of people. j

Does anyone know her exact username?

Hi, Emily. I looked it up for you. sharon is "skn69".  Click on the three little bars at the top left corner of the site. It might ask you to sign in using the email and password you used when you first registered. A menu will pop open. Click on "search".  Then key in skn69. 

Winterberry posted:

Hi, Emily. I looked it up for you. sharon is "skn69".  Click on the three little bars at the top left corner of the site. It might ask you to sign in using the email and password you used when you first registered. A menu will pop open. Click on "search".  Then key in skn69. 

Thank you so much xx

Hi Emily, 

Well, first off, congratulations. This is a huge step (in the right direction) and hopefully the beginning of a new life and freedom for you.

What can I say...there are 3 areas that you need to prepare:

1. your pre-op kit: loose and comfortable clothing for both your hospital stay and your post-op stay in a hotel or hostel while you are down there. Loose tops, stretchy pants, loose waistbands for when you have the indwelling catheter and leg bag hanging on. 

I also found it useful to have velcro-type sneakers or slip-on shoes that I do not need to bend down to put on. Flip-flops that you can slip into for hospital showers and easy walking the hallways. 

Big t-shirts with wide sleeves to get over I.V. bottles and for comfortable time in bed. I always take a pair of warm socks because I get cold feet post-op, a hot water bottle (I now use cherry-pit filled bags that you can have heated in the microwave for back and shoulder pain post op. )

A loose and comfortable back belt can be useful but not before 4 weeks post op...it can hold everything in when you start walking a bit more (obligatory here in France! They oblige you to buy it pre-op)

Throat spray...I cough due to the throat intubation during the surgery and I get a very scratchy throat (hell post-op)...so I have an anaesthetic throat spray that calms things down immediately (Chloraseptic spray, in the States).

Smells are important to me and hospitals...stink. So I take in little spray perfume samples that I spray on my pillow or around me to ease the stink and give myself some pleasure. I also like to keep a nice smelling pillow...it makes sleep easier. 

Your favourite neck pillow, a bathrobe that is to put on (think about I.V.s ) and stretch pants of jogging pants or large shorts.

Face cream and body lotion or oil to massage your skin and hydrate. 

Music. Your favourite music, books, magazines etc (or just your computer or notebook)

For the post-op stay in the hotel: More of the same and lots of rest. Popsicles, non-carbonated drinks like easy juices, herbal teas and Gatorade. 

Easily digestible foods like canned tuna and sardines for the protein, cold cuts, protein shakes etc (avoid nuts, peas, beans, chickpeas, corn, mushrooms, pineapple, fruit and vegetable skins, stringy anything, lumpy, chunky, or thick foods).

I like a high protein diet  (meat, fish, chicken...) and blended soups or puréed vegetables for a post-op diet. You need smoothing stuff that goes through easily, especially when your stoma is still an infant. 

When you get home: More of the same. No bending, stretching, pushing, pulling, lifting, twisting etc. So make sure that you have everything that you will need easily available and anything that rolls under the bed will just have to stay there until someone else gets it for you!

Time to call in all chips, markers and debts. Get everyone who loves you or just owes you a favour to pop in to give you a hand with the laundry, cooking or to do the shopping for you. NO, you cannot vacuum or wash your floors...avoid getting into the bathtub...you may not be able to lift yourself out!

Line your mattress with a protective liner or put a 'blue pad ' under you for the first months...If you have neither then just sleep with a thick towel under you for the first while. Better safe than sorry...If you have a sudden leak, you can just change the towel and not the whole bed!

Good luck...and ask questions, lots of questions...We are all here for you.

Sharon

 

 

skn69 posted:

Hi Emily, 

Well, first off, congratulations. This is a huge step (in the right direction) and hopefully the beginning of a new life and freedom for you.

What can I say...there are 3 areas that you need to prepare:

1. your pre-op kit: loose and comfortable clothing for both your hospital stay and your post-op stay in a hotel or hostel while you are down there. Loose tops, stretchy pants, loose waistbands for when you have the indwelling catheter and leg bag hanging on. 

I also found it useful to have velcro-type sneakers or slip-on shoes that I do not need to bend down to put on. Flip-flops that you can slip into for hospital showers and easy walking the hallways. 

Big t-shirts with wide sleeves to get over I.V. bottles and for comfortable time in bed. I always take a pair of warm socks because I get cold feet post-op, a hot water bottle (I now use cherry-pit filled bags that you can have heated in the microwave for back and shoulder pain post op. )

A loose and comfortable back belt can be useful but not before 4 weeks post op...it can hold everything in when you start walking a bit more (obligatory here in France! They oblige you to buy it pre-op)

Throat spray...I cough due to the throat intubation during the surgery and I get a very scratchy throat (hell post-op)...so I have an anaesthetic throat spray that calms things down immediately (Chloraseptic spray, in the States).

Smells are important to me and hospitals...stink. So I take in little spray perfume samples that I spray on my pillow or around me to ease the stink and give myself some pleasure. I also like to keep a nice smelling pillow...it makes sleep easier. 

Your favourite neck pillow, a bathrobe that is to put on (think about I.V.s ) and stretch pants of jogging pants or large shorts.

Face cream and body lotion or oil to massage your skin and hydrate. 

Music. Your favourite music, books, magazines etc (or just your computer or notebook)

For the post-op stay in the hotel: More of the same and lots of rest. Popsicles, non-carbonated drinks like easy juices, herbal teas and Gatorade. 

Easily digestible foods like canned tuna and sardines for the protein, cold cuts, protein shakes etc (avoid nuts, peas, beans, chickpeas, corn, mushrooms, pineapple, fruit and vegetable skins, stringy anything, lumpy, chunky, or thick foods).

I like a high protein diet  (meat, fish, chicken...) and blended soups or puréed vegetables for a post-op diet. You need smoothing stuff that goes through easily, especially when your stoma is still an infant. 

When you get home: More of the same. No bending, stretching, pushing, pulling, lifting, twisting etc. So make sure that you have everything that you will need easily available and anything that rolls under the bed will just have to stay there until someone else gets it for you!

Time to call in all chips, markers and debts. Get everyone who loves you or just owes you a favour to pop in to give you a hand with the laundry, cooking or to do the shopping for you. NO, you cannot vacuum or wash your floors...avoid getting into the bathtub...you may not be able to lift yourself out!

Line your mattress with a protective liner or put a 'blue pad ' under you for the first months...If you have neither then just sleep with a thick towel under you for the first while. Better safe than sorry...If you have a sudden leak, you can just change the towel and not the whole bed!

Good luck...and ask questions, lots of questions...We are all here for you.

Sharon

 

 

Hi Sharon, that is some seriously useful information, thank you so much.  You've given me a to do list!  Really appreciate you taking the time to send me that message!

Kind regards,

Emily

Hi Emily, 

I haven't posted on here yet but thought now might be the time since you are heading to Melbourne for your op... I had mine done in Epworth Freemasons just over a year ago.... travelled over from Perth for it... still new to the whole thing myself and really appreciate all the info on this site... good to know there are a few more of us here in Aus.... to answer your question of preparation I agree with the others regarding getting fit and what to pack...

I’d also suggest to get some catheters before the op. They didnt have any in the hospital when I had mine done, might be different now but could be good to have everything you need yourself. The other thing I was glad to have with me was decent noise cancelling headphones... block out everything and chill! I had some music and also the Headspace app on my phone... I highly recommend it.... And a cooling face spray like Avene Thermal Spring spray for the initial time where you cant get out of bed by yourself... sounds really silly but it was a godsend for me, recommended by a friend who’d been in hospital too.... 

Thats about it really. I sincerely hope everything goes well for you. 🙏

 

 

 

 

Liddo posted:

Hi Emily, 

I haven't posted on here yet but thought now might be the time since you are heading to Melbourne for your op... I had mine done in Epworth Freemasons just over a year ago.... travelled over from Perth for it... still new to the whole thing myself and really appreciate all the info on this site... good to know there are a few more of us here in Aus.... to answer your question of preparation I agree with the others regarding getting fit and what to pack...

I’d also suggest to get some catheters before the op. They didnt have any in the hospital when I had mine done, might be different now but could be good to have everything you need yourself. The other thing I was glad to have with me was decent noise cancelling headphones... block out everything and chill! I had some music and also the Headspace app on my phone... I highly recommend it.... And a cooling face spray like Avene Thermal Spring spray for the initial time where you cant get out of bed by yourself... sounds really silly but it was a godsend for me, recommended by a friend who’d been in hospital too.... 

Thats about it really. I sincerely hope everything goes well for you. 🙏

 

 

 

 

Thank you so much for replying.  Have you joined our Australian group on facebook K Pouch Australia?https://www.facebook.com/groups/2303404103235641/  Would be great to have your local experience to draw from for people considering the surgery!  Also I have a blog I write www.apaininmyarse.home.blog if you’re interested?  I would love your feedback!

- What are your travel plans for after surgery?  I had a plan A to fly back home and return for post-op and a plan B to stay with family who live a couple hours away. My hospital stay ended up longer than I expected partly due to an abscess. I then realized that my bum hurt too much to sit on a plane or in a car. So I had to make a last-minute plan C to stay near the hospital for a couple weeks. Think through several travel options just in case. If you are flying, request a medical pre-board to get in the front row.  That way you can stand or kneel if you can’t sit for long  

- I was fortunate to have my mom stay at the hospital with me. If you have someone, consider what they will need to be comfortable too. I called the hospital to see what amenities they had and fortunately there was a family lounge with full kitchen. Otherwise we would have packed a teapot and other things for her comfort. I wish I had thought of noise canceling ear plugs for her so she didn’t get disturbed by nurses all night  

-  If you aren’t a water drinker, start getting into the habit now. It’s really hard to do if you aren’t used to it. I still haven’t figured it out. 

- Research the food restrictions you’ll have after surgery (and maybe forever). If any of your favorites are on the list, indulge now while you can. 

- Loose clothing was mentioned - that includes underwear. I bought some cheap ones a couple sizes bigger so I could cut them when needed.

- Recovering from this surgery was the toughest thing I’ve ever had to do - physically, emotionally, in every way. Line up friends and family now who you can call for support and distraction. I didn’t feel like talking to anyone in the beginning but I think the isolation made things harder.

- Movies, music, games...anything to keep your mind occupied. Hospital tv gets old very quickly and staring out of a window all day doesn’t help.  

- I always take a heating pad to the hospital for several reasons: hospitals are always cold and heat helps relieve pain but those little disposable packs are useless.  My veins are non-existent from years of medical treatments making starting an IV or drawing blood nearly impossible.  Heating my arms helps.  For this surgery I had a heated throw and a heating pad.  Since the room was often cold, my mother used whichever one I didn’t need at the time.

- Spray powder/deodorant.  You won’t be able to get up and bathe as much as you would like after laying in bed getting sweaty.  Take tons of baby wipes.

- This is probably just me but I always take a bag of candy or treats with me to the hospital. I put them in a bowl in my room by the door with a thank you card/sign for all the nurses, doctors, and other medical staff who help me. They really appreciate it and I secretly think that it gets me more attention. No one forgets or gets too busy to check on me when there are treats. Plus, I also enjoyed having candy to suck on for my dry mouth and sore throat.

Good Luck!

 

Shavon posted:

- What are your travel plans for after surgery?  I had a plan A to fly back home and return for post-op and a plan B to stay with family who live a couple hours away. My hospital stay ended up longer than I expected partly due to an abscess. I then realized that my bum hurt too much to sit on a plane or in a car. So I had to make a last-minute plan C to stay near the hospital for a couple weeks. Think through several travel options just in case. If you are flying, request a medical pre-board to get in the front row.  That way you can stand or kneel if you can’t sit for long  

- I was fortunate to have my mom stay at the hospital with me. If you have someone, consider what they will need to be comfortable too. I called the hospital to see what amenities they had and fortunately there was a family lounge with full kitchen. Otherwise we would have packed a teapot and other things for her comfort. I wish I had thought of noise canceling ear plugs for her so she didn’t get disturbed by nurses all night  

-  If you aren’t a water drinker, start getting into the habit now. It’s really hard to do if you aren’t used to it. I still haven’t figured it out. 

- Research the food restrictions you’ll have after surgery (and maybe forever). If any of your favorites are on the list, indulge now while you can. 

- Loose clothing was mentioned - that includes underwear. I bought some cheap ones a couple sizes bigger so I could cut them when needed.

- Recovering from this surgery was the toughest thing I’ve ever had to do - physically, emotionally, in every way. Line up friends and family now who you can call for support and distraction. I didn’t feel like talking to anyone in the beginning but I think the isolation made things harder.

- Movies, music, games...anything to keep your mind occupied. Hospital tv gets old very quickly and staring out of a window all day doesn’t help.  

- I always take a heating pad to the hospital for several reasons: hospitals are always cold and heat helps relieve pain but those little disposable packs are useless.  My veins are non-existent from years of medical treatments making starting an IV or drawing blood nearly impossible.  Heating my arms helps.  For this surgery I had a heated throw and a heating pad.  Since the room was often cold, my mother used whichever one I didn’t need at the time.

- Spray powder/deodorant.  You won’t be able to get up and bathe as much as you would like after laying in bed getting sweaty.  Take tons of baby wipes.

- This is probably just me but I always take a bag of candy or treats with me to the hospital. I put them in a bowl in my room by the door with a thank you card/sign for all the nurses, doctors, and other medical staff who help me. They really appreciate it and I secretly think that it gets me more attention. No one forgets or gets too busy to check on me when there are treats. Plus, I also enjoyed having candy to suck on for my dry mouth and sore throat.

Good Luck!

 

We are staying in Melbourne for 7 weeks minimum.  The first few I'll be in hospital then I'll join my husband at the hotel that is just around the corner from the hospital.  We will then fly home, I hadn't thought to ask for a front seat so thank you.  The hospital doesn't have any facilities for family members but his hotel is only a 5 min walk away and he'll have a kitchenette and everything he needs there.  I'm already a big water drinker 6-7 litres a day so that should be good.  I adhere to a whole foods plant based diet and it will work really well with the K Pouch so I'm lucky in that regard.  Why would you need to cut your clothing?  I have a great support network (including you guys) so this shouldn't be a problem!  Yes, I've organised distractions and entertainment and I'll have my husband there.  I'll have to get a heat pad, I have the same problem with my veins.  Deodorant and baby wipes are on my list! I like your idea about the candy for the staff, I don't eat sugar but it's a great idea to have it there for them!  Thank you so much!

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