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Greetings and good day :)

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Everglade_sb
(@everglade_sb)
Joined: 3 years ago
Posts: 2
Topic starter  

Hello forum !

I am SM from Toronto. :)

I am so grateful to have found you. This is my first time here. I surfed in searching information on Ostomy belts (which I didn't even know existed until this morning), and found the comparison video that Eric posted.

I am not vegan, nor have I got an ostomy. This said, I am the partner (and future caregiver) of someone who was just diagnosed with rectal cancer. The doctors have suggested a 6-month colostomy bag following a surgery to remove the tumour, and as I predicted, my partner freaked out at the idea.

I came here looking for a comprehensive, non-scary resource of info to help him realize that life is worth living, ostomy bags are manageable, and there is no reason he can't continue doing the things he loves -- playing music, going out, working to work, etc.

Now the vegan piece -- my partner is vegetarian, and I was one for 14 years, but have stopped eating vegetarian. I am a big believer of natural healing and vegan eating as a means of healing from Cancer (combined with your medical treatments, as advised). Together, my partner and I are going to be moving to a plant-based/non-processed/no sugar diet. So that there is food related content on here is extra awesome!

I won't lie ... this diagnoses was scary, and I spent days in fear. He's still processing the news, but next week he will have no choice but to face the decision. I personally am worried about him going into a depression post-ostomy -- seeing as he already struggles with this, and I'm afraid he will struggle to see the light. 

I am going to browse this forum and site, and hope to find some great content to share with my partner when he's mentally present and ready to hear it.

Thank you everyone for reading. I hope everyone is doing great. Feel free to say hello. <3

- SM


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4176
 

I'm glad you found us, SM! 

I often feel like those who have a temporary stoma have a harder time dealing with it compared to those who have a permanent one. Mostly because it tends to feel like a disruptive interruption to life when you know you wone have it for long, but that doesn't mean that the experience can be good. 

I was out doing multi-kilometer hikes less than a month after surgery, but I went in REALLY sick from Crohn's disease. If your partner is in good shape going into the surgery, his recovery should be even faster. But there will be a learning curve that I hope this forum, and my resources, can help you guys with :) 

Feel free to post questions (or search to see if they've already been answered) about any lifestyle concerns you both might have. 

Does he know where he's having the surgery at? I had mine at Mt. Sinai in Toronto and have only good things to say about their care before, during, and after my surgery. They are also a great hospital for accessing and receiving information so he's better prepared. 

Good luck to you both! 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@john68)
Joined: 6 years ago
Posts: 2018
 

Hi SM, Welcome ?. I had my ostomy at 26, I am 52 and can honestly assure your partner that life is certainly good with a bag. I have done more with one than without. Don’t judge recovery time as what things will be like. Ask questions read the information and the very best wishes going forward ?

ileostomy 31st August 1994 for Crohns


   
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Everglade_sb
(@everglade_sb)
Joined: 3 years ago
Posts: 2
Topic starter  

@veganostomy Hi there ... amazing, thanks for the reply. I think that my partner's concern is that 6 months will turn into forever. And if it does, it does. I am also looking for information on people who do just have temp colostomies, to show him that is a "thing" that happens.

Also, he is a "cool guy" musician type ... lol ... always on stage, I think he was worried about people noticing. I personally was seeking answers about diet, swimming, intimacy, etc. I'm glad to see there's lots of info to browse through.

He is a natural foods type of guy -- and I personally think was so floored that despite his healthy lifestyle this is happening to him. As we know, Cancer doesn't always work that way. His bloodwork and BP are perfect, he's in his mid-40's and I feel is very strong to be able to fight and recover from surgery. 

Likely surgery at Trillium in Mississauga, as we are in the west end. I heard Mt. Sinai is awesome and has wonderful specialists. 

That's so reassuring that you were active again in such a short time. He has been suffering with pain for a YEAR. With COVID, colonoscopies and specialists were impossible to obtain -- he had to deal with the unknown all of this time. It took such a toll on his mental health, his social life, and our relationship -- he was relying on OTC pain killers just to function, and they stopped working. It's been a rough ride.

I, personally, am looking forward to him getting this surgery just to give him some relief from pain. I know it's a long road to recovery, but I'm trying to be very optimistic. <3

SM


   
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Lynne
(@lynne)
Joined: 4 years ago
Posts: 74
 

Welcome SM and partner!  Eric's site and this forum offer a wealth of reassuring and useful information.  So glad you found it.  I had my surgery 2 years ago and am in better health now than I have been for decades.  I'm heading out now with some friends for a boat ride to a local island and then some hiking (ostomy bag in tow, and these particular friends will be none the wiser :-)) . Be patient with yourselves and the future can be very bright for you both.  All the best.  


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

Hi SM,

 I am in London, just a couple of hours down the 401.

I also had rectal cancer; I can understand how frightening the diagnosis is. When I was told that I had cancer and would probably need an ostomy, I was so depressed I couldn’t even talk about it. I wanted so badly for it not to be true. I was crying when they wheeled me into the OR. Six years later, I can tell you that while there have been some challenges, life with an ostomy isn’t all that different than without one. I am managing just fine. It is an adjustment learning to live with something new, but once you get the hang of it, it just feels normal. I know your partner is struggling with this, but it really is something that can be adapted to, and nobody else needs to know about it. Good for you for stumbling onto this site! This is a wonderful resource, and everyone here is more than willing to help. So bring on your questions - we will be happy to answer them. I might be able to answer some questions about the cancer piece as well, although my treatment was in 2015, so things may have changed a fair bit. I echo what Eric said about Mt Sinai. My treatment and surgery were in London, but I did consult Dr Zane Cohen a couple of times for a second opinion. 

Laurie

Just a semicolon


   
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(@squeakyandliza)
Joined: 5 years ago
Posts: 992
 

@everglade_sb 

Hi SM,

That is so sweet that you are concerned about your partner. Having a loving partner can make such a huge difference. I know it would have been so much harder for me without my husband. 

As for me, my ileostomy surgery 3 years ago was unplanned. I went by ambulance to the hospital due to extreme pain in my gut to where I couldn’t even stand. The next day I had an ostomy, and I had never even heard of an ostomy before that. I was very sick and sort of in shock about the whole thing and sort of a zombie getting through the hospital stay and IV antibiotics at home (I was very septic). When I had been home a little over a month, it all sort of hit me and I cried for the first time. And cried and cried and cried. With time, it got better. Finding this website and group of people almost a year after my surgery really helped me turn the corner to acceptance. Almost anything that happened to me has happened to someone here. And everyone here is so supportive. Show your partner this site and encourage him to reach out with questions or for support. 

I still struggle at times, actually am struggling a bit right now, but I know I will be okay. I was actually coming in here to reach out for encouragement, but wanted to reply to your post as soon as I saw it. 

Hang in there! Keep loving your partner, even when he makes it hard. That is probably when he needs it the most. Keep coming here and asking any questions that come up. 

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


   
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bagbob
(@bagbob)
Joined: 3 years ago
Posts: 18
 

Welcome to the forum SM and partner. I think you'll find that most of us here have been through some scary stuff ourselves before we ended up with an ostomy. For me recovering and being able to go back to work, ride bicycles with my daughters and play with the band I'm in have helped me feel good about being where I'm at. Make sure to let your partner know that there are guys like me out there on stage and back to all the things I love to do. ~BOB

ulcerative colitis since 2011
ileostomy 3-3-2021


   
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(@dogtalkerer)
Joined: 6 years ago
Posts: 313
 

Are you sure its a temp colostomy and not a temp loop ileostomy? 

Swimming-: can swim in 1mm short farmer john or a 1mm sleeveless wetsuit vest. 

Intimacy- just wear a compression tee shirt and new bag or rinsed with water not more than 3days old 

I do more athletic after cancer/colostomy than before.

Attitude is more important thad diet. If i didn't eat some after cemo infusion i got sicker than normal, - eat whatever tastes good.

Many sicks vegans out there as well.  Diet not a cure-all. Thou eating health should be common sense to all.

 

 


   
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(@stella)
Joined: 3 years ago
Posts: 82
 

I live in Toronto as well. And I was diagnosed to have rectum cancer last year. My treatments were : radiation and chemo to reduce the tumor. Then surgery to remove the tumor. Then chemo again.

During the first treatment radiation and chemo. Had diarrhea, the radiation doctor advised me not to eat any raw vegetables nor fruits, eat applesauce. I found out later that to use water to wash the anus is better than just use toilet paper or wipes. I think if this part be kept not hurt start from the beginning, the pain would be less.

Use more cream on hand and feet. If using lots of cream on skin of hands and feet still dry, let the chemo doctor know, they may reduce the dose. This happened to me during the 3rd stage treatment - the chemo treatment after surgery.

Mine is a loop ileostomy. And is supposed to reverse. But I still have the urine issue (I cannot pass urine by myself after surgery, it's been almost 9 months. Now urologist and his nurse taught me to do self catheter. I hope this can be resolved one day soon).

I myself would like to resolve the urine issue first. And I may talk to my surgeon that to reverse after its ensured my cancer doesn't come back. I'm not rushing to reverse. This is my second time to have surgery to remove my colon. Now I have 1/3 of the colon and rectum (I think).

I understand how you SM and your partner feel. Please try not to fear. Keep telling yourselves that this is the assigned path to walk on. Good if you can walk hand in hand with him. He needs that. With an ostomy bag is just another type of life, a new life. When time pass, you will accept. I tried very hard not to look back my past, instead, try to walk on my new life. (I'm calling my stoma my baby, and I promise to take good care of my baby. She seems understand)

I don't mind to show or tell others about my baby and bag. No one scare of me. They all understand and give lots of comforting words.

We are a very caring family here. Just come in and talk whenever you and your partner want. We all share. This family helped me walk on this life since last year while I felt very depressed and was in a very dark cloud.


   
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sjlovestosing
(@sjlovestosing)
Joined: 6 years ago
Posts: 651
 

@everglade_sb 

Hello SM,

I had colorectal cancer (stage 2) three years ago.  I had it all removed and live with a permanent colostomy. I truly understand your partner's shock. I also led a fairly healthy lifestyle and no one in my family had this type of cancer. After having a colonoscopy, I was told by my doctor in no uncertain terms what needed to be done. After having a good cry, I pulled up my "big girl pants" and began researching about colostomies. That is when I came to this site. Eric has been invaluable with his info and support as well as all the other "ostomates" here. 

I would like your partner to know that there is life with an ostomy. I am almost 65 years old (YIKES), am very active and feel better than I have in years. My advice to him would be to have a positive attitude in all of this - that is half the battle. 

Also, make sure he has a good ostomy nurse to guide him.  I had two - one in the hospital and one when I returned home. SM, your partner may need your help as well. When I was in the hospital, the ostomy nurse instructed my husband as to how to change my appliance, in case I was unable to do so at some point. My husband, who has a sensitive nose, rolled up his sleeves and learned how to do it. As a matter of fact, he helped me the first few times when I came home and still checks my stoma from time-to-time to make sure everything is ok. (He doesn't need to do this, but he has never been turned off by my altered appearance - God bless him!)

Stella


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 525
 

Hi Everglade,

My permanent colostomy because of cancer was more than three years ago; during that first year I had two surgeries, then chemo, radiation, and chemo again.  I have done well with the stoma and apparatus. I would like to advise you to take care of yourself and to keep an eye on your own wellbeing in every way, also. Without going into detail here, I can assure you that this is very very important. Best wishes to your partner, and to you.

LL

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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