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Surgery on the 8th.

lp1964's picture
lp1964
Posts: 840
Joined: Jun 2013

Finally the day is set to remove my rectal cancer at the Cedars Sinai in Los Angeles. Will be a bit complicated, because they also have to remove a part of my tail bone and do a flap from my stomach to have a better closure. So there will be the main dsurgeon, a plastic surgeon and a spine surgeon. I will end up with a permanent colostomy So ill be marked and educated by a stoma nurse before.

What should I take with me to the hospital?

Those of you who have colostomy, what would you suggest at the beginning?

Thank you, 

Laz

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i can honestly say in my 5 years of being a part of this community i dont know of anyone who has gone thru a surgery like that.as far as the colostomy someone else will have to chime in as i only had a temporary one for 5 weeks and was put back together.just wanted to say i will be thinking of you and saying a prayer that everything goes well.hang in there and we will be here to support you...Godbless...johnnybegood

Lovekitties's picture
Lovekitties
Posts: 2902
Joined: Jan 2010

Hi Laz, I know that you are thinking that the 8th can't get here fast enough and also wishing time would slow down.

While I didn't have any bone surgery involved, I did have other organs and colostomy done at same time.  One of the things that kinda struck me as funny, is that the surgeon used "medical super glue" to close the surgical site where anus was removed.  He said he had much more luck with that than stitches.  I had no issues with it

I have to say that when I was first told of the need for a colostomy, I was a bit put off.   However, my ostomy nurse gave me a copy of this book.   It is an excellent source for the person just starting out. It was written by a mother who has an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definately on Amazon or perhaps at the local book store

The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies

Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN

 

 I feel certain that your ostomy nurse will get you some initial supplies, but you may also want to inquire if there is a local place to get them.  I originally was able to get mine at a Home Health Store, but changed over to an on-line supplier.  There are several out there who will contact your doctor to get the "script" on what you need and how much you need.  There are lots of choices of supplies as there are a number of companies who make them.  Most on-line suppliers carry from all the major sources.  You should also contact Hollister, Coloplast and ConvaTec and ask to be sent their start-up or sample kit.  They are free and may help you to determine which is best choice for you.  I would personally recommend the drainable product until you get to know your needs and also to have a few around if you should have any temp. issues with diahrea.

 

You may want to check with your insurance company to see what they cover...how many per 3 months...additional supplies, etc.  Then I would order everything they allow if you can.  That way you can try it all out and pick more selectively the next time.

 

Life with a colostomy takes a bit of getting used to and organizaition but you should be able to do most everything that you did before.  There are even web sites for clothing and options for intimate times that you might want to check out.

 

If you have any specific questions, feel free to ask on a thread or PM me.

 

Best wishes for good outcome and speedy recovery,

 

Marie who loves kitties

 

LivinginNH's picture
LivinginNH
Posts: 1272
Joined: Apr 2010

Hi Laz,

I had sent you a PM a few days ago that suggested that you read "John23"'s blog, and I'm sure that he'll give you some tips if you send him a PM.  I can also provide you with some guidance having done complete care and maintenance for Rick's colostomy and ileostomy, if you want to PM me as well.  Just rremember....other than the ones that the hospital puts on you while you're there, don't use Hollister appliances - they really stink (in more ways than one). 

Cyn

RobinKaye
Posts: 93
Joined: Nov 2011

Ditto that! After freaking out,trying to figure some way to stop the leaking my husband was having daily I read John's blog...took his advice and from that point on could easily get 5-7 days between wafer changes.  His advice beat the advice of the best stoma nurses in Chicago. 

Best of luck, surgery sure won't be fun but you'll get through it just fine. 

Robin

jen2012
Posts: 1188
Joined: Aug 2012

My husband didn't really bring anything. He was pretty out of it for the first few days. I brought pics of the kids and then his laptop and cell phone after a couple of days. He just watched Tv and slept for the most part. He used johnny's and the fancy complementary slipper socks, toothbrush etc.

Hes had a temp ileostomy since april...was supposed to be reversed after 6 to 8 weeks but still waiting. The first month or so was miserable....but its pretty much 2nd nature at this point. I ordered samples from everywhere but ended up with the one piece hollister and change it almost every day. I don't think my hubbys ostomy nurse did a great job of marking him. He really cant wear jeans or suit pants without an issue. I would bring a couple of pair of pants you wear regularly when they mark you. I'm not sure what the differences are between an ileo and colostomy but hopefully you will have a great nurse to help you through.

Chelsea71
Posts: 1168
Joined: Sep 2012

Yes, Laz, the day you meet with the ostomy nurse for marking is very important.  You want to make sure the stoma is in the exact best spot.  Make sure the nurse is experienced and is really good at her/his job.  

 

Jen, you change it every day!?  That must be very stressful for you both.  

jen2012
Posts: 1188
Joined: Aug 2012

Every work day because he doesn't want to chance it. Had a couple of accidents when he first went back to work. Its pretty routine now and he knows when a pouch is failing (skin burns or itches) and he uses a binder clip to keep the bottom from opening...Velcro stuck to his pants and it all poured down his legs...3 times! Hes actually off camping this weekend with our boy scout...packed an extra set of clothes and some pouches and off he went.

LivinginNH's picture
LivinginNH
Posts: 1272
Joined: Apr 2010

Jenn dear....you might want to consider other products than Hollister since you wouldn't need to change the bags every day.  Those bags stink; Rick had more blow outs than I could count and we were really careful too!  We also talked to John, and with his advice, our lives became SO much better with his guidance.  We also found that the two piece bags work best, that way you don't have to remove the barriers off of his poor skin every single day.  God that was awful for Rick, his skin was actually eroding before our eyes.  I also ordered the barrier that you roll up in the middle (no scissors) which made applying it easier and it snugged up around the stoma which prevented his skin from being damaged by fluid.  You just roll it out, don't stretch it.  This product's barrier was able to stay on him for at least four days.  Oh, and the ConvaTec Stoma powder that John suggested was a God send.  No more pink and painful skin around the stoma. The name of the brand and product that we found that worked best is stated below:

SUR-FIT Natura® ConvaTec Moldable Technology™ Skin Barrier

Best wishes,

Cyn

jen2012
Posts: 1188
Joined: Aug 2012

Thanks Cyn - we did order samples from so many places - the 3 bigs ones and a few other places.  This Hollister one piece was the one that fit the most of his needs and he likes it best.   I forgot we do use the ring (think it's convatec? Eakin slim) it helps with any gaps around the stoma.  And yes, the powder is a must for him! 

Laz - We use Edgepark for supplies and they have been wonderful.  Most of their staff answering the phone is knowledgeable and helpful and they deliver fast!   Don't forget to see what your insurance will cover for other supplies - gloves, gauze squares, etc.  

hippiechicks
Posts: 302
Joined: Sep 2012

That is exactly the one I use as well after many a raw skin days with the Hollister brand. Although, I use the durahesive and a convex shape ... but that of course would depend on the stoma and output, and I have an ileostomy.  I found I needed to change to convex instead of using the ring or fillers after my second surgery changed my abdomen.  I also had great success after reading John's blog .. great advice! (although I do need to use skin prep or I get a rash from the adhesive tape around the wafer) Cool

Annabelle41415's picture
Annabelle41415
Posts: 4210
Joined: Feb 2009

You probably won't want your own jammies as your tummy will be too sore to have your own and hospital gown is the best way to go.  Other than reading material, music, phone, computer, it's basically what you would want when you don't feel like doing anything and feel like crap Undecided.  You will feel a sense of relief from the surgery but then realize that your body is totally different which will be a big shock.  Just remember, that this is keeping you alive and you are now going to be cancer free because of the surgery.  Make sure you take some good slippers as they give you just socks and they aren't good for the great walk you will be taking around the hospital ward.  I'm so glad that you have a good attitude towards this.  You can get through this and I'm praying for a great outcome and speedy recovery.

Kim

Gavin63
Posts: 98
Joined: Aug 2013

Hi Laz,

Glad that the date for your surgery is fixed. I have not gone through this process & have no experience. But many others would have had these experience which they will share with you. So, I can only wish you good luck & pray for a speedy recovery. Hang in there Laz, everything will be OK Smile

Gavin 

hippiechicks
Posts: 302
Joined: Sep 2012

Hi Laz .. 

I have not had any bone surgery ... but had enough open surgeries and an ileostomy for several years.  Probably at this point I will say it is permanent.  I have just been going through non-stop surgeries and treatments to even worry about it honestly.  The only time I had issues really was the first few days after chemo treatments as the skin seemed to break down around it.  Definately from the chemo. There is a powder to use to help with skin that works well.  Also, adhesive removal wipes are helpful for easier removal of that sticky residue from adhesive tapes used on some wafers. I also use skin prep wipes .. I have very sensitive skin and for me it is very useful.  I do not find the paste very affective, but my ostomy nurse always suggests using it.

As for PJ's, I agree ... hospital attire is the best.  Nothing around your waist right now ... specially with a new ostomy.  You will want to have easy access for keeping an eye on surgical sight at first. I would have plenty of sweat pants available to wear during healing .. nothing tight around your waist. As for what to bring to hospital ... I brought a laptop so I was able to watch movies/tv series, listen to music as well as pop on to social media .. even if just for a minute.  I tried to keep all else out of the germs ... including my cloths .. I did bring my own toiletries as well as pillow .. the hospital ones just did not cut it!! 

They will probably give you a clear one piece cut to fit applience to begin with in the hospital for your new ostomy.  I found that they are the best in the beginning.  It gives you the advantage of seeing through the bag to be sure all is ok .. and also be advised that your ostomy will change slightly in size the first few weeks with swelling and such.  I also agree with the Hollister advice. I have tried this product several times as it has qualities about it I thought I would prefer, however, for me the wafer (the part that touches the skin) broke down WAY to quickly and needed frequent changing.  I found the same with Colorplast actually. 

I personally have done best with Convatec and have my supplies delivered directly to my home.  My online supplier has an option for automatic delivery and it is just great!  I will also add, I have NEVER had leakage with Convatec and the wear time is approximately 4 days.  I prefer the moldable two piece product with the velcro closure now. I am young and active and find it the most comfortable for me.  My friends are amazed that they can not even tell I have an ostomy!

I was also given a brochure at the hospital from my ostomy nurse for an online ostomy wear company that supplies wraps and other garments.  I use a wrap and love it!!!  It holds the bag in a pocket away from touching your skin and therefor protecting you from leakage and keeping the bag stable and flat under clothing.  There are some for everyday wear, intiment moments, and also swimming. 

I did have leakage issues with both of the other products.  Remembering that everyone is different, our skin sensitivity, and also our output.  Like I said, I have an ileostomy, so my particular output is different from a colostomy so trying different products that meet your needs would be best.  The free samples from the companies is really the best way to find what works for you. 

Feel free to PM me if I can be of futher help to you! Cool

Wishing you much success on your upcoming surgery!!

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Will be thinking of you as you approach this major crossroad in your life....want to wish you the best of luck and hope for a speedy recovery for you.  Somehow, I feel that this will go really well for you.  The waiting room will be full waiting to hear the good word from you.

All the best!

-Craig

marbleotis's picture
marbleotis
Posts: 476
Joined: Mar 2012

Laz,

 I did not have that type of surgery so I cannot give advise.  But I can say I will pray for you and send good thoughts your way.

Remember - we are alot stronger than we think!!!

All my best!

Helen321's picture
Helen321
Posts: 733
Joined: May 2012

Gown pajamas.  Sweater.  Thick socks (a few pairs).  Not much else needed.  It's mostly sleep and talking to your roommate or on the phone.  A pillow and blanket for the ride home.  Very loose pants for the ride home.  A good spirit and sense of humor.

Sloan has this push button pain system that does not work at all!  So if your hospital has that and it's not working for you, you might want to ask for pill form.  I felt so much better after I switched to pills and also it was a consistent schedule.  I asked, I got, wish I would have asked sooner.  Have someone to speak on your behalf in case you are not well.  Tell them to be forceful. 

If you get a nurse at home, she will want to order gloves and stuff like that, you don't need gloves.  Your intestines make their own flora and so infection is not a real issue.  Skin irritation is so you need stoma powder and sometimes paste and there are adhesive wipes that keep the powder in place (I very rarely use those now, I still have half of the original box).   Takes some practice.  That first rash is a doozy!  Order samples before you go in the hospital from Hollister, Coloplast and Convatec.  Tell them you need 10 days worth of samples and see if they'll send paste and powder.  I find Convatec to be the most generous and that's the brand I went with in the end.  Once you pick something, call and ask for more samples until you receive permanent supplies.

On long days out, always carry extra pants.  Always have two extra "kits" with you.  I can't say that enough.  Learning the hard way is not fun.

https://www.edgepark.com/information/education/ostomy/  This is one company that lists all ostomy supplies.  I use Byram Healthcare to order supplies only because my home nurse started me with them.  Oh and if you are getting a home nurse through your insurance, call the nursing agency and tell them she MUST be an ostomy nurse.  I paid $50 in copays for a woman to take my blood pressure and temperature and sheknew nothing about ostomies and tried to order me supplies I didn't need which I would have had to pay for. Luckily I did my own research.

lp1964's picture
lp1964
Posts: 840
Joined: Jun 2013

Today I had my last consultations. Looks like I wont need a spine surgeon, my main surgeon clip off my tail bone where the tumor is sitting. The plastic surgeon will flap my right abdominal muscle and fold it down to fill the space where the rectum was. The surgery is about 6 hours. I was also marked today where my colostomy will be. I'm scared, but at the same time I'm ready to get rid of my cancer. I really like my surgeon, a very warm reassuring individual.

I know you all will be with me there next Tuesday and all the way and I will draw strength from your support. You have done so much for me already.

Laz

 

traci43's picture
traci43
Posts: 420
Joined: Jul 2007

Laz - I had part of my tail bone removed during my lastest surgery.  I laid on my side for 4 weeks while it healed.  I didn't have abdominal surgery at the same time so I could lie on my stomach.  I had problems with the incision closing and it leaked for a couple of weeks, not bad, but annoying.  Even though you don't sit on your tail bone it was still sore.  I've not had a ostomy so can't comment there.

Good luck on your surgery!  hope everything goes well.  Traci

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