Community Forums

surgery is tomorrow  

Page 1 / 2
  RSS

Awc19
(@awc19)
Registered
Joined: 3 weeks ago
Posts: 8
April 8, 2019 9:13 am  

I am having my surgery for rectal cancer on 4-9-19. I will have my rectum removed and my colon reattached. I will have a temporary ileostomy as long as my post surgery chemo lasts, expecting it to be at least 6 months. My consult with the stoma nurse suggested this website several weeks ago and I have been reading and watching videos. Just a little overwhelming and hoping I get the hang of this all from eating (been vegan for 9 yrs.)  to caring for my body and living my life without being defined by the Ostomy. I live about an hour away from my hospital and nurses so I will use the forum to get my questions answered. 

Alice


LLNorth and LK liked
Quote
Topic Tags
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1197
April 8, 2019 9:23 am  

Hi Alice, welcome to the forum, the very best wishes for tomorrow. Make use of the site and do ask questions.👍

ileostomy 31st August 1994 for Crohns


LK and Awc19 liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2123
April 8, 2019 10:32 am  

Welcome to the forums, Alice. 

It certainly can get overwhelming, but like most things, we tend to learn and adjust along the way. It's good that you've been looking for resources and I do hope the next 6+ months go by without many difficulties. 

Please, feel free to ask any questions you may have. You'll likely be advised to start slow with your diet at first, but you should be able to return to your regular diet after your recovery.

Best of luck! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


Dona, LK and Awc19 liked
ReplyQuote
Raine
(@raine)
Registered
Joined: 12 months ago
Posts: 47
April 8, 2019 12:56 pm  

Sending good vibes and prayers your way.  I hope the surgery goes well and you recover quickly.

Raine


Awc19, Dona and LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 355
April 8, 2019 11:13 pm  

Hi Alice... Welcome! You are ahead of most of us by the mile.  I too live a good distance from our big hospital and the small one nearby has only 18 beds and as of late the emergency room is closed due to doctor shortages.  Just keep a small bag packed of extra supplies and a change of clothes until you get the hang of things and until you feel more in control. I tend to keep all sorts of used little bottles that make a great place to fill with M9 and tuck into my purse or bag. You can contact the companies, Hollister will send you sample bottles of things like the stoma powder and M9 and even the air freshener. I asked really nice  one day and Coloplast sent me a nice zipper bag to put my day supplies in for when I go to the mall or grocery shopping.  Keep an eye n the free scissors they have once in a while also. However, that said, Hollister just told me they will send scissors out anytime we need them for free. You do not have to decide on any one bag right away. You have time to pick and choose from samples. I think the biggest part of all of this ostomy stuff is to just be prepared. We are all here to help and encourage and suggest things to make life easier for you.  I never had the ostomy nurse or training about how to change my own bag, so just ask the nurses to show you exactly what to do before you leave the hospital. You have this and you will be great at it. We all are...even if it is eventually. It can take time to find the steps to the dance but when you do, you will know it. Just be patient with yourself, your energy, drink plenty of fluids and get the rest your body tells you it needs. All the best tomorrow, and be well.

Linda

Linda


Awc19 and Dona liked
ReplyQuote
Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 620
April 9, 2019 5:30 pm  

Welcome Alice,

Great to ask questions , and usually someone here can help. Best of luck with the surgery and recovery. You will get the hang of this .. being a vegan shouldn't be a problem.

Just start out eating small amounts, chew well, and keep a journal.

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


Awc19 and LK liked
ReplyQuote
sjlovestosing
(@sjlovestosing)
Registered
Joined: 1 year ago
Posts: 169
April 10, 2019 9:16 am  

Hi Alice, and welcome to the forum! Your ostomy nurse is a smart woman to send you here. This is where I began my journey over a year ago before my surgery (which was April 15, 2018) and it's where I have gotten a great deal of good information, tips, and support from my "osto- mates". I don't know where I'd be without this wonderful site. (Again, thank you, Eric!!!)

I have a permanent colostomy because I had rectal cancer as well. I had a wonderful surgeon who did a fantastic job. I am so grateful to God for this second chance of life He has given me. My prayer for you is that you will have few problems with the chemo and that adjusting to your temporary ileostomy will happen smoothly.

God bless,

Stella


Awc19, Dona, LK and 1 people liked
ReplyQuote
LLNorth
(@llholiday)
Registered
Joined: 3 months ago
Posts: 21
April 10, 2019 11:43 am  

Hi Alice,

Thinking of you and sending my best wishes for a speedy recovery. My colostomy, also for rectal cancer, was April 30, 2018. VeganOstomy has been a wonderful help, and I have learned so much - and continue to learn!

LL

I love the smell of coffee in the morning. It smells like .... victory.


Awc19, Dona and LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 355
April 11, 2019 11:53 am  

Alice...I was up early again this morning and thinking and praying for you. I hope things are going well.  Remember to drink plenty of fluids and to take that walk around the halls. It not only helps you but also lets the doctors and nurses know that you will manage once at home the best you can.  If your having too much pain and need help make sure you tell them that also.  Walking helps with so many things. Circulation, clearing your system of meds. sooner, moving the gas, and the guts and getting those tummy muscles up and at'em again.  You can not rush the healing process, and everyone is different in how things go, but those little walks everyday or several times makes a whole lot of difference in how you feel. Also, and not too many people say this, but if something is going to go wrong just walking, you want that to happen in the hospital where they know you. All the best, and make sure to let us know how you are doing. :)

Stella and LLNorth...Congrats to you both on your one year anniversary. You are survivors!  I  know that even ten years after the fact, having this site has helped me tremendously. Thank you again Eric. Your a genius! I was very much alone in my walk of healing after my ostomy surgery.  I so would have loved to have someone come beside me and say what was normal and what was not, and hay, your doing great or get your butt to the doctor. My hubby died five months after my surgery, and he was too sick to help anymore then he did, but for what he did do and say, it made the world of difference to me.  When someone has shared their story it has always helped in how I thought and felt. So, I was wondering if the two of you, for Alice and anyone else reading, and going thru a similar process, if the  two of you, would be so kind as to give a before, during and after over view of your personal experiences. Maybe even touch on the "what is to come" situation if you can. I was thinking that maybe seeing that proverbial light at the end of the tunnel would be encouraging for Alice. Sharing a similar situation can help a lot. This is not a request of Erics, but just me, so feel free to not share also.  Cancer is all a very personal experience and everyone would certainly understand if you choose not to.  I hope you and anyone going thru this has a great day today., and that cancer is in the rear view mirror permanently. All the best.

 

Keep Healing well.  Linda

Linda


Awc19 liked
ReplyQuote
LLNorth
(@llholiday)
Registered
Joined: 3 months ago
Posts: 21
April 11, 2019 1:00 pm  

LK, that is a good idea, so here goes: A week before surgery I met with an ostomy nurse for mapping,; he showed me various products and then attached a bag so I could see and feel how it would be (at that point I felt a little faint but that passed quickly and he never knew). When I woke after surgery there was a two-piece system on me - a couple of days later another ostomy nurse explained how to change it and brought me to the bathroom to do that. She seemed to think my husband would be present, and at that point I said that nobody could come in but me and had her stand on the other side of the door directing as I did it! The next day I allowed her into the bathroom to see how I had done, which was very well, actually. I had  the months of chemo and radiation after the surgery which made for a long year,  but except for tiring easily now I am feeling well. I cannot begin to say how much I have appreciated the skilled and kind surgeon and nurses.

You can do this, Alice - my thoughts are with you!

 

I love the smell of coffee in the morning. It smells like .... victory.


Awc19 and LK liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2123
April 12, 2019 9:47 am  

Alice, I hope that your surgery went as expected and that you're now recovering relatively pain-free. My suggestion is to start planning what you'd like to do this summer once you're all healed up :) 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


Awc19 and LK liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 355
April 12, 2019 6:49 pm  

LLNorth...Thank You. That was great. I wish they had put a bag on me to feel what it is like before hand. No surprises right. I guess this is the difference between an emergency surgery and a planned operation. Mine was slightly planned, but I sure never had that training or the nurse. It is wonderful you had the chance to be somewhat trained, and also I greatly applaud your desire and protection of your privacy. Good on you! I m glad you are feeling better, but dealing with fatigue is not a fun or easy thing to do. As Eric suggested to Alice, I realized quickly that I would need to make plans to keep moving forward, knowing I would loose my main source of encouragement so soon after surgery was extremely hard on me. I made plans for the next day to start. I  mostly planned my meals, snacks and what to drink for the next day. It helped with appetite and I believe it also gave me a greater desire to eat, so did watching cooking shows on TV.,  helped me to move forward everyday. Thank you so much for sharing. Anyone else? Your stories are all important and I am sure will help someone who may or may not realize they could use the encouragement. Questions are welcome.

Linda


Awc19 and LLNorth liked
ReplyQuote
Awc19
(@awc19)
Registered
Joined: 3 weeks ago
Posts: 8
April 15, 2019 11:28 am  

Thank you everyone for the wonderful encouragement. Surgery went well and the doctors were extremely pleased. I got home from the hospital on Saturday afternoon. It feels good just being home. I am doing fine emptying my bag and this morning was the first time for me to change my wafer and bag by myself. I think I got the mechanics down but am still a bit uncertain if I sized it right. I have contacted the stoma nurse and will send her pictures I took as I did the process to have her tell me if it is right. 

I am grateful to have all of your input. 

Alice 

Alice


LK, VeganOstomy and john68 liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1197
April 15, 2019 11:46 am  

Hi Awc19, That’s great u are home and all has gone well. It’s always an anxious time that first change of the wafer. The general rule of thumb is an 1/8 of an inch. The stoma needs room to move and a wafer will puff up. You have the right idea by checking with the stoma nurse. Believe me this becomes second nature and always take yer time 👍

ileostomy 31st August 1994 for Crohns


LK liked
ReplyQuote
Awc19
(@awc19)
Registered
Joined: 3 weeks ago
Posts: 8
April 15, 2019 1:26 pm  

Thanks, I am a little nervous I may need to change it and go a bit bigger. I hope they return my call before too long. If not, I may change it later because the last thing I want is to injure my stoma. 

Alice


LK liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2123
April 15, 2019 1:30 pm  

Your stoma will be changing size over the next month. The hole may fit right when you put it on, but then might be too big by the time you change it again. Don't worry and just keep an eye on things. 

Personally, I found that measuring my stoma with every change and changing my appliance more frequently during the first 4-6 weeks (like changing it every other day) helped a lot. If you keep your appliance on too long while your stoma is changing size, you may get skin irritation. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


LK and john68 liked
ReplyQuote
Awc19
(@awc19)
Registered
Joined: 3 weeks ago
Posts: 8
April 15, 2019 3:25 pm  

Thanks, this is helpful. I do think I may redo it later today. I have my supplies ordered so only have the ones I was sent home from the hospital with. Changing it a bit more frequently would give me more practice to get comfortable with it. I assume I can order supplies outside of the ones provided by insurance so I may do that so I know I won't run out. 

Alice


LK liked
ReplyQuote
john68
(@john68)
Registered
Joined: 2 years ago
Posts: 1197
April 15, 2019 3:43 pm  

Hi Alice, Can I also suggest ordering samples from the different companies. Their are many great products and all types to suit each ostomate. 

ileostomy 31st August 1994 for Crohns


VeganOstomy, LK and Awc19 liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2123
April 16, 2019 12:00 am  

I definitely agree with John on the samples.

Here's a page that has all the suppliers that I've come across that outwardly offer free samples : https://www.veganostomy.ca/ostomy-suppliers-free-samples/

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


Awc19 liked
ReplyQuote
LK
 LK
(@dlkfiretruck)
Registered
Joined: 2 years ago
Posts: 355
April 16, 2019 1:00 am  

Welcome home Alice...I love the phrase "I m okay so far". I told myself this often when I got home from my stoma surgery. You are doing amazing and your confidence level is just great. You did the right thing by taking the photos and sending them to the nurse. That is now your own piece of advice to give incoming newbies when you are feeling well enough and it is your turn to help encourage on this site, you will be really good at it. The tricks and secrets you learn will be helpful to so many others. But, look after yourself first and get really well and healthy again. I am so glad you are home and that all went well for you.  I remember so well the nerves that stepped up when I first had to change my pouch. Believe me, it is normal. When you recognize this happening, just stop, take a few deep breaths, in thru your nose and out thru your mouth, nice and deep and tell the nerves to back off, your in charge.  The men are right about the size you cut for your stoma, just do the best you can. Your body will let you know if you have a leak or skin irritation. It usually starts with tingles and or an itchy feeling. Sometimes it had felt like something was runny under my wafer. Also, sometimes the skin may be a bit numb from the surgery, so if you think you have a leak, just change that pouch and or bag over.  If you can feel something happening, always check it out. If you are not sure if there is output under the wafer, simply place a finger or two towards the outside edge of your pouch, hold the plastic down and press gently on the wafer and in towards the center as if you are wiping something off a counter top. From there watch be aware if there is something coming out from beneath the wafer at the site of the hole you cut. If you can see something, then you should change the wafer over. If you are still not sure, then it is better to be safe then sorry and change the wafer. I certainly would not leave it over night, as the skin would have so much more time to erode. You do not need that on top of just having surgery.  It will interrupt your sleep and make for a pouch change in the middle of the night when you would so much rather be sleeping. You are going to be just fine in all of this and it will become old hat in no time. One thing I wish someone had told me about showering was to not shower with the bag ff for the first few months or until you are confident in your shower and pouch routine. Check in here anytime you need a friendly ostomate and we are always glad to help. Rest, drink plenty of fluids, more then you may think you need, unless your guts are too runny, then it is just fine to slow down a bit. Just do not get dehydrated if you can help it.  All the best Alice  and welcome home!

Be well!...Linda

Linda


Awc19 liked
ReplyQuote
Page 1 / 2
Share:

  
Working

Please Login or Register