Feeling Down 16 months in ):

We are almost the same age. I have an ileo too.  

Hold your head high. I

I am fortunate as my wife just wants me healthy.  Don't get me wrong. It takes a toll. But we can come back. 

Positive thinking and being open and not embarrassed by what has been done.  I've had mine about 20 months. I'm OK with it. I didn't ever think I would be. But I am. I have down days. But I don't let it keep me down. 

I never tried a group thing. Not very social. I have a friend at work that has a pouch. We can relate. I had one too before this. And he had a bag before his pouch. It's the only "group" thing I've got. 

We were pretty close in the timing of getting an ileo. I had mine in October of 15.  

I'm sorry no one answered your post. I just had to reach out. It's just taking a bit longer. We are older and it takes us elders a bit longer to adjust sometimes. 

As for the intimate thing. I can't help you there. A wrap and dark room. That's as far as I will go. Lol. 

Richard. 

Thanks Richard. You and I chatted a bit before my surgery and always appreciated your feedback. Just wondering when I will fully accept it. I have accepted it's not the worst thing and also grateful for not feeling sick anymore. Hopefully I will wrap my head around it all sooner then later. 

Cheers

Lynn

Hi Lynn. I’m sorry that you feel so down about your body. I had my surgeries 23 years ago and throughout that time I’ve gone through periods of anger and animosity at my body. It can feel like a total betrayal. I think, “my body is a Judas.” But here’s what I know helps – because the mind can make things worse or better in small increments – view your body with compassion.  Sometimes it helps me to think of my body as an injured bird that needs love or a small child that is crying and needs holding and rocking back and forth. Vitamins, iron and B12 supplements, lots of rest (just lay down and don’t do anything for 30 minutes if you can), lots of hydration, soft toilet paper, a heating pad on the abdomen, soft music. While you’re relaxing try to remember what it felt like when you weren’t feeling broken. Whatever small things you can do to make yourself feel comfortable for a few moments. On the most basic level, treat yourself and your body with kindness and gentleness. Intimacy will come in the future – don’t worry about it today, in this moment.

Fosty posted:

Thanks Richard. You and I chatted a bit before my surgery and always appreciated your feedback. Just wondering when I will fully accept it. I have accepted it's not the worst thing and also grateful for not feeling sick anymore. Hopefully I will wrap my head around it all sooner then later. 

Cheers

Lynn

My memory is shot.

As you can see. 

And I am younger than you! Lol. 

Richard 

Lynn, I empathize with you. I remember feeling so positive in the beginning - so happy to be out of jpouch pain, anticipating getting my life back - and then slowly having more periods of feeling less positive about the whole thing. There are times I miss wearing tighter clothes, showering without having to cover my pouch, being able to go long periods without needing to empty. Just that easier life. The support group I tried left me feeling worse and if it's not supporting, well....

I second what everyone else said. The positive self talk and consideration can help to keep those negative thoughts at bay. 

One more thing: I had a therapist throughout my jpouch and just into my ostomy. She was a lifeline and a blessing. 

Lori

Thanks Lori & Jen! It helps to get your suggestions. I did see a therapist 2x so far but not sure if it's helpful for my situation. I'm also feeling down about gaining weight back after being thin post op. It's just an added downer with the pouch. I do work out and have a trainer twice a week. Any tips on trying to lose weight with ostomy? 

Lynn

I can't give advice on losing weight because I have the opposite problem. I can't gain any more. I'm stuck. I know it may sound silly but I am 30 pounds down from when I had it removed.  I see myself in pictures and videos and it looks like this has aged me at least 3-4 years.  That's what I find depressing. Not actually having to wear a bag. I can and am dealing with that.  I empty alot and that gets in the way but it's only because I eat a lot. But my weight has stabilized and it stays there. I'm glad it's not going down. But it's not going up. I am way too skinny.  And it looks terrible. When I see it.  

But. This is where I am.  I was skinny at the start and skinnier now. And I don't think it will change. 

It's no fun being skinny.  Both have their problems. Too much. To little weight.  Neither is good. 

This comes from a skinny person. My perspective.  Alot of people want to be here. I don't.  

Richard. 

P. S. 

I've tried alot of different foods to gain. 

Nothing works. It all goes right through. 

I could eat a gallon of ice cream and it wouldn't make a dent. 

Lynn, I would suggest changing up your eating habits. It may sound too basic or simple but if you're eating a certain way and you're not losing weight, change it. Cut out dairy or increase vegetables or make breakfast your biggest meal and decrease for the other two meals. Or do all three. Also, a yoga practice has been shown to help with weight loss. It's safe, works/relaxes the whole body and actually changes brain chemistry! Even if you've got an existing trainer and routine, it's worth consider adding this to it.

Will look into that. My sleep is interrupted every few hours to empty. I wake up automatically even if bag not full. Like a subconscious thing. It's making me so tired during the day. How do you deal with it? Thankfully I'm retired and able to rest as needed. 

Fosty posted:

Will look into that. My sleep is interrupted every few hours to empty. I wake up automatically even if bag not full. Like a subconscious thing. It's making me so tired during the day. How do you deal with it? Thankfully I'm retired and able to rest as needed. 

I found that this is gonna happen at least once a night. 

For the past year I have been looking at the clock and its always within the first two hours. Always. But usually the bladder gets me up so while I'm up I empty. After that I'm good to go. Sometimes I may have to do it again but compared to when I had a pouch this has been easy. I never had a good night's sleep before. Now. I can get six hours. Yes. Six hours straight. Some nights I have slept eight hours straight!  I never in my wildest dreams. Awake dreams. Lol. Thought I would ever get a good night's sleep. I'm not retired and I was a zombie it seems like forever. I was so exhausted when I got home from work and still could not get sleep.  I have that back now.  I was going downhill fast. 

The only advice I can give is to not eat a few hours prior to bed and if when you do. Make it something that is gonna slow things down. 

Richard. 

Richard is right, less food at night, less output. For the first year after my surgery, I would wake up and empty. Now I can usually get away with staying in bed and burping my bag very carefully because it's full of gas rather than waste. On the weekends, when I'm generally eating more and later, I'll get up once. The less light in the bathroom, the better. We even put in a new exhaust fan with a nightlight and a quiet fan. It helps me to not wake up so much and it pulls the aroma out quietly and fast!

Lambiepie, FYI I shower without covering my appliance/bag. I use a blow dryer on it afterwards.  I went for months covering it until I read a post from a lady on FB that says she swims in the ocean with hers with no problem. 

My intimate life is zero and I am 61.  My husband had his prostate removed due to cancer. He says everything works okay again but hasn't initiated intimacy.  "Ostomy Secrets" has loungerie lace  panties that are cute you might want to try a pair.  They are made with bag support within the garment.  Convatec owns Ostomy Secrets. Have you run across any other place that sells ostomy underwear? I love their underwear better than wearing regular underwear.

Thanks TE I looked on Ostomy Secrets but it's quite pricey plus US dollars for me. I wish we had a store or something here in Canada. 

Hello, Fosty. Here is a Canadian distributor and online store that might help. Or google "ostomy underwear, Canada" for more sources. Good luck!

https://www.ostomycares.com/ostomy-care-catalog.html

Thanks so much Winterberry for the info! 

Ostomy secrets has sales all the time and they are still expensive. I wait for the sales. 

Thanks for the Canadian website Winterberry. Boo hoo their prices are just as high as Ostomy Secrets.

TE Marie posted:

Ostomy secrets has sales all the time and they are still expensive. I wait for the sales. 

Thanks for the Canadian website Winterberry. Boo hoo their prices are just as high as Ostomy Secrets.

No kidding. 

30 bucks for a peice of spandex is ridiculous. 

Even on sale 22 is too much. 

10 bucks at the most. Seems like we are taken advantage of.  So I will try a five dollar tube top next time. I don't use the pocket anyways. 

Richard. 

I agree that these prices are exorbitant. Perhaps they know we have so few options? I went to Kmart and bought larger sized stretchy underwear. I wear my bag at an angle, so they keep everything covered and held in place nicely. $12.99 for three pairs!