Hi everyone, this is my first time posting. I've had my ileostomy for 5.5 years now; it was supposed to be temporary, but COVID kicked in 6 months ago. I finally went in for a reversal, but then boom, I went into total respiratory failure, so my consultant is not for doing the reversal now. I have to say I've never gotten used to it and was so happy when I thought finally. So you can imagine my disappointment. I'm on quite a few meds for osteoporosis, depression, and chronic pain. I don't eat a lot, and still, I can't get rid of weight. I can't walk far due to fractures in my back, which gets me down big time. I just need help.
Wonderlay
Mar 31, 2025 9:21 am
IGGIE
Mar 31, 2025 9:40 am
G-Day Wonderlay,
A lot of people on here have lost weight by going on the carnivore diet. If you Google "carnivore," you can learn all there is to know about it. There is a thing called chair exercises that you can also look up.
Regards, IGGIE
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Posted by: Primeboy
Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
SusanT
Mar 31, 2025 12:13 pm
Talk to your doctor about seeing a physical therapist to improve your strength. I'd be reluctant to start any exercise program without medical advice given your back issues. But you are much too young to be in this bad of shape.
Same advice on diet. See a nutritionist. As weak as you are, you need to be careful that you are getting the appropriate nutrients while trying to lose weight. Although I suspect that increased physical activity may be your best bet.
As far as the ileostomy goes, it seems like many people who expect a reversal never fully embrace their ostomy. Hang out here and meet some people who love their ostomies.
I have 2 permanent ostomies, a colostomy and a urostomy. I am grateful to have them. They saved my life.
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ron in mich
Mar 31, 2025 12:55 pm
Hi Wonderlay, welcome to the site! From snowy N. Michigan, we just surpassed 300 in. for the season. Any exercise is better than none, even if it's just walking around in your house, especially if you have stairs to go up and down.
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bobwilson5999
Mar 31, 2025 3:13 pm
I hear ya, Susan. Yes, my ileostomy saved my life, and I too am grateful... but "love it"? I think not.
Dwild-WA
Mar 31, 2025 4:04 pm
Months ago, my chemo doc had me start with 1 minute per day of walking around my house, and if I needed to rest halfway through, it was fine. I added 1 minute every week (so the 2nd week was 2 minutes per day of walking), and I'm now up to at least 30 minutes of walking outside (because it's a beautiful spring here and inspires me). I still use my hiking pole to ensure my balance, and sometimes I stop to catch my breath, and it's all good. I hear your disappointment and can relate; I was told that mine was temporary, but when they found the cancer, they said no reversal while you're dealing with chemo. That may change now, seeing a surgeon next week for a 2nd opinion. I'm sorry you're having such a rough time; the people on here are wonderful.
Wonderlay
Mar 31, 2025 4:13 pm
Thanks for your advice. I will definitely look them up. It's so good to talk to people who understand 👌🍀
Wonderlay
Mar 31, 2025 4:13 pm
Thanks for your advice. I will definitely look them up. It's so good to talk to people who understand 👌🍀
infinitycastle52777
Apr 01, 2025 8:02 pm
I understand your disappointment about the reversal. I thought I was going to have a reversal right up until a month before the surgery when my doctor finally told me there was no hope of a reversal ever. I was crushed. She told me I have a permanent ileostomy. That was after 5 months of planning on a reversal. I was crushed. At least you might be able to get a reversal sometime in the future.
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SusanT
Apr 01, 2025 9:26 pm
That's gotta be so hard. At least I knew my fate all along... no stringing me along with false hope.
Perhaps the OP would be better off giving up hope for now. Then, if reversal is possible down the road, it will be a pleasant surprise.
infinitycastle52777
Apr 01, 2025 11:15 pm
Yeah, because if you count on it and it doesn't happen, it's a big letdown. But if it does become possible, then it's a great thing.
imsafanwa
Apr 03, 2025 10:06 pm
Stay as tough as you can; it's really important. I started with simple stretches sitting in a chair, and you begin to feel better pretty quickly when you're more flexible. Strength!
Wonderlay
Apr 21, 2025 5:50 pm
Hi, I'm sorry for your news. I totally understand. I had a perforated bowel due to my diverticulitis in 2019 and was due to get a reversal 6 months after, then COVID happened. Six months ago, I finally was going in for a reversal and went into total respiratory failure. My consultant won't touch me now or the hernia I developed. So, it's ileostomy for life now. I have never gotten used to it; life has totally changed. I constantly get ulcers near the stoma, just a nightmare, but I do try and tell myself there are other people worse off. I'm here to talk if you ever want to.