Looking for Encouragement After Surgery

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2603
Lovewins12
Jun 05, 2023 11:42 am

Happy Monday all!

Just looking for some words of encouragement. Had my surgery last Wednesday and I am at home still in some pain and realization as hit that I now have a bag of poop hanging on me! I realized it saved my life and I am grateful the surgery was a success. I see everyone outside in the sun while I am still recovering and changing and emptying the bag is getting to me.

Any support would be helpful! Thanks!

Beth22
Jun 05, 2023 12:18 pm

Hi there,

Hang in there. You will be outside in no time. Take it easy. Remember, you just had surgery last week. Take time for yourself and your body to heal. I know it's tough. You can always sit outside and enjoy the sunshine and air. But you will get there. Smile today because it saved your life and remember you are the same person before you had a bag hanging. The bag hanging just makes you more fabulous and a fighter.

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ron in mich
Jun 05, 2023 12:56 pm

Hi Lovewins, what you are going through is normal. There are times when it will be "why me," and also times of anger, and occasionally funny, like a kid farting in a bathtub. But the best part is when acceptance sets in and you realize it's no big deal, and life goes on.

IGGIE
Jun 05, 2023 2:25 pm

It's just time, my friend. We have all been there and now it's all good. You will learn to love your stoma.

Ben38
Jun 05, 2023 2:28 pm

Normal feelings. It doesn't really hit you until after surgery. I never believe anyone who says they accepted their ostomy before they had surgery.

Take it one step at a time. Your emotions will change by the minute. For now, nothing wrong with feeling sorry for ourselves after surgery. It's part of the healing process. Talking really does help, whether posting on here or talking to family and friends. Your surgery is so recent. I'm sure you don't feel like doing anything and that's okay. Your body needs time to heal. But in the next month or so, when pain is less and moving about starts to get easier, try to get out even if just to visit family and friends to help build your confidence.

 
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AlexT
Jun 05, 2023 3:06 pm

If you're at home, get your butt up and go outside for a short walk, enjoy the sun/weather, say hi to whoever walks by and take the first steps in getting on with your new normal. The worst thing you can do is let your mind tell you that you have to hide your condition. The faster you change your thoughts and push yourself just a little, the better you'll heal and the better the place your mind will be. Let me know how that walk goes and how good the sun feels. Have a good day.

Douglas john
Jun 05, 2023 5:22 pm

Hi.

Hang on in there, we've all been there. Of course, there is the possibility that you might be able to irrigate. No more poo pouches and almost complete control over your incontinence. Check it out with your medical professionals. It's worth a try. John

tmn68
Jun 05, 2023 8:22 pm

I know how much of a bummer it is to realize this is your new reality. I can't say it gets easier, (cause that's BS) but you definitely realize that you are stronger than you thought and can do this! It is difficult at first and only having this for 4 years makes me far from an expert but you will honestly feel more confident and comfortable in the future.

Stay optimistic, you'll be surprised at your inner strength!

Riva
Jun 05, 2023 8:42 pm

It's all very new to you, but education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our national organization. Also, Ostomy101.com. You will learn about foods, blockages, skin care, clothing, ostomy products, travel, activities, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember you are not alone on this new journey of yours. We have all been there. Wearing a pouch does not define whom you are. There are solutions. We're here for you. Best of luck.

veejay
Jun 05, 2023 10:13 pm

Congratulations Lovewins, great post... saying how you really feel, so admirable!

Dogen\'s bag
Jun 06, 2023 5:23 pm

I felt isolated and horrible, fell into depression and realized after time had passed that I was no longer not caring or sad all the time. It's really really hard and non-appliance-wearing people can't get it. It's even hard to identify with others in the same circumstances.

As I was told here after my surgery- "You are grieving"

You are grieving the death of the old you, allow time and yourself to cry and yell and appreciate and get mad all that stuff. It sucks and it's hard but you come out stronger.

It was 6 months for me on the 4th. I have good days and really bad days but the bad days are fewer than a few months back.

You got this!

knitter
Jun 10, 2023 2:46 pm

Oh, how I can relate! I was where you are now just weeks ago. But I get the sense I'm older than you, so I think it may have taken longer for me to heal.

Anyway, I had a tumor removed from my rectum and an ileostomy. I'm 71. It has taken about 6 weeks for me to feel better to the point I want to move around and go outside. I have gone outside, but I walked very tentatively and took it easy (I'm used to 3- or 4-mile hikes with my dogs). For the first 3 to 4 weeks, I'd plop back in bed after doing some light chores and take Tylenol/Advil to alleviate discomfort. I've never watched so much Netflix and Amazon Prime. Depressing.

But you will heal and you will feel better and the outdoors will call you! The pouch is a bummer, but I'm beginning to grow familiar with taking care of myself and also reach out to others for advice. There are lots of YouTube videos with information about dealing with an ileostomy and some are upbeat and interesting.

I know you feel depressed and isolated. I did, too, and still do at times. I have wonderful friends and family so I'm fortunate. Don't hesitate to talk to the friends you trust. I was a little surprised how comfortable some other people were with my experience. I also have fantastic daughters who help out with things I still don't do
like lift 35-pound bags of dog food! They tell me it feels good to help, and I think it actually does. If you had a family member going through this, imagine how you'd feel relieved to be able to lend a hand.

I'm so glad you posted with this. Dealing with the psychological effects of an ileostomy is daunting and takes grit. I wish you the very best. My two-cents worth is to take it slow and day by day. And thanks for making ME feel less alone.

eefyjig
Jun 10, 2023 3:08 pm

You may find this going in stages. You're in the "you've gotta be kidding me, this is so unfair" stage. I cried for two hours while I was still in the hospital. Then I got the courage to empty my bag by myself, then, when I got home, I realized how much better I felt from when I was in the middle of my ulcerative colitis and so on and so on. It just becomes part of your life and you get back to doing what you always do. There are still times when I know I'm the only one in a group who has this and it's a bit of a bummer but that's all it is, a bummer, but I'm much longer out from you; you're still a newbie just a week and a half out. Maybe get some sun, listen to the birds and know that your pain will go away eventually. Give yourself time, we've all been where you are, we understand, it's o.k., you'll be o.k..

CrappyColon
Jun 10, 2023 3:59 pm
Reply to eefyjig

Lori, I definitely want you in my corner next time I have a surgery (hopefully won't be for a while, 3 last year is enough, ya?). I don't wish for you the difficult health issues, but you can see how you've come through them a compassionate, kind person helping others walk through their journeys.

CrappyColon
Jun 10, 2023 4:23 pm

Someone smarter than me will have to explain sometime what it is like for our brains to process seeing a piece of our intestine outside our body and we are expected to be okay with it. Having our insides inside our bodies is how it would be in a perfect world. But some of us 'lucky' ones go through these surgeries and are forced to adapt. I had this nurse aide, think Peter Pan with glasses (they wear forest green scrubs), super sweet, and he was emptying my bag for me because I still wouldn't do it - pretty sure I was still at the 'telling them it is so gross to watch food coming out of my body' stage and in the hospital = clear bags. I started bawling out of nowhere and Peter Pan's eyes looked at me so wide and like what the heck just happened to her. I kept telling him it wasn't him, it was me and I just really didn't want to be in the hospital anymore. I was done. I was over it. The next day my nurse aide was a mama who asked me what my plan for going home was since I wouldn't touch the bag. I gave her a couple answers and she told me how those were not going to work and I needed to be able to do it. Then she stayed with me and told me about her Grandma's banana pudding recipe, and how she inherited this big old family house and all the family was mad because she was going to cut down this beloved peach tree. So then I asked her to help me figure out how to get myself to do this and she did. I needed someone to have a normal, non-medical conversation with me and remind me life would go on, and I needed to figure out how to go on with it... at my pace. Everyone's pace is different. Your body heals a little more every day. Unless you do something you're not supposed to do as I am prone to

Thanks for sharing where you're at

eefyjig
Jun 12, 2023 3:07 am
Reply to CrappyColon

Right back at ya', Jodie

LotusMk1
Jun 12, 2023 7:45 pm

I had a colostomy done in Feb 1993 and was told it couldn't be reversed. I told them they had to reverse it but of course it was a no-no. The stoma nurse said, "Well, on my watch, you are not going out of here with shit and crap running down your leg. We will get this sorted." Well and truly put in my place. Come August 93, I was surfing with my son in Cornwall. Life sorted. Since then, no stopping me living a full life. Come back and chat to me. Best wishes, Adrian.

SharkFan
Jun 13, 2023 1:47 am

I had my ileostomy in March of 2020. I was in the hospital as staff was getting the word that there would be an outdoor hospital set up for the unknown doom of COVID. Long story short, I returned home 3 days later, bag on my gut, no clue how many bags I'd need or how my family would react. As the days passed, news crews were touting the "New Normal", masks, social distancing, closed businesses and a lockdown. "New Normal," I would joke as I looked down at the rosebud on my gut. Getting up from a table and hitting the bag on the underside of it causing it to fall. Putting small supply kits in all my cars, my work gear and golf bag. That's my new normal. I was determined to get out to a golf course within 2 months. My Physical Therapist made that happen. I went back to work, slowly adjusted my diet to normal again. Three years later, I can eat all that I've missed for the past 15 years. I can enjoy an adult beverage and am back golfing with friends again. The only difference is when I hit a bad shot and say "Get your head out of your A," my buddies will say, "I didn't think you could do that anymore."

Give yourself a break. It's naturally tough to have gone through surgery and not knowing what to expect. I've since had a few other patients referred to me, one is local. We meet up for a beer and talk about what unique problems WE all have.

Keep coming back here for support, advice and maybe a few good laughs. It will get better.

Best of Health,

SharkFan

IGGIE
Jun 15, 2023 2:38 pm

I keep getting the feeling that you guys in America don't get a lot of help from a stoma nurse, and not enough help when you leave hospital. Am I right? Push more for help and assistance. Regards, IGGIE

CrappyColon
Jun 15, 2023 5:46 pm
Reply to IGGIE

I kindly 'fired' my home care nurses because I could do the bag changes myself by the time I got home and didn't have leaks like when they did the changes. Things like meals, cleaning my house, walking my dogs, helping with my kids are the things most helpful to me after a surgery. And 2 of my dogs won't let strangers near, especially my female dog, so that was an issue with 'strangers' being around too.

ron in mich
Jun 16, 2023 12:56 pm

Hi all, the last surgery I had for resection and stoma moved to the other side was started out as lap, but ended up being full open due to scar tissue and had no home nursing.

Come in but my bro came over to help as my wife was still working. He helped me get to the bathroom or made lunch for me and him and helped change the bandage. After a week of that, I was doing it on my own.

debbinmiller
Jun 19, 2023 3:13 pm
Reply to IGGIE

You are right! I was in the hospital for 6 weeks after my surgery and then another 2 weeks in rehab. The entire time I was in both places, they emptied my bag for me, which was great, or so I thought.....only problem is I didn't learn how to do it myself. When I got home they arranged for a Home Health nurse to come to my home three times a week for 6 weeks to keep an eye on my stomas, I have two, one for feces and the other for mucous. I had a fistula from my colon to my vagina, hence the reason for the mucous stoma. I also have a fistula to my rectum, which the doc told me isn't hurting anything and as long as I don't mind passing "old" feces every now and then, then it's not a problem.

IGGIE
Jun 21, 2023 3:50 pm
Reply to debbinmiller

G'day Debbiinmiller, that is so outrageous and should be reported. All you have mentioned can be fixed.

Danno
Jul 27, 2023 1:50 pm

Hey! I'm 6 months out from my surgery. I felt the same way early on but a lot of what's in your head, you learn that it's only in your head. (Over time)

I was terrified of everything. Lifting things that are too heavy, eating anything, drinking alcohol, travelling, you name it.

6 months out and I now eat whatever I want (chewing like normal), I've traveled through Costa Rica, I drink alcohol with no issues, and I'm back at the gym deadlifting 250lbs. (and even working out my abs)

I never thought I would make it this far this soon, but that was just in my head. Of course, I didn't rush anything. I ate new things in small doses, I started at the gym with extremely small weight, etc. but over time you learn what you're capable of. If you ever think "oh, can I do this?" I say give it a shot and see what happens.

I stopped taking all pain medication 1 day after my surgery and haven't had even an Advil since. I had some weird fear that it would slow down my recovery process (as I learned in the hospital) so I ditched it.

I'm even going for two more surgeries. Next up a loop ileostomy/pouch creation, then 5 months later stoma removal. Can't wait to see where this takes me.

This is just my experience. I know everyone has a different reason for being where we are.

Good luck!

MoeMoe
Aug 02, 2023 2:06 pm

I am 4 weeks colostomy post-op... I can tell you from my own experience that the first 2 weeks I had more mental and emotional anguish than physical pain but this last week is much better. I think it's normal to feel off in the beginning. I am now taking little strolls down the street and feeling a bit more comfortable with the ostomy. I was terrified of it and everything else it came with. It's a lot to take in for anyone but you will prevail, you are strong, brave and bold!! At least that's what I tell myself every day and it has helped me to find my courage! Sending you positive vibes and hope you are feeling better!!

AlexT
Aug 02, 2023 2:45 pm
Reply to MoeMoe

The worst thing people can do is let their thoughts take over. I know that's hard at first when a person comes home and is still healing. However, the quicker a person gets up, starts moving, doing things, and living again, your mind doesn't have time to keep you down. I get told quite often to suck it up, buttercup.

DexieB
Aug 25, 2023 6:38 pm
Reply to IGGIE

You are correct. I had to go into the clinic 2 days after I was released from a 10-day hospital stay to see a Stoma Nurse, as they have no home care here (at least in my area). I could barely walk, and also had a 104.2 fever so the nurse told me to go to the Emergency Room (turns out I didn't get a long enough dose of antibiotics to treat my infection so they ended up readmitting me for another 11 days). We only have 2 stoma nurses in my area and they are quite booked, and don't go into homes. It's been difficult to get in, so I find myself leaving messages or sending them pics if I have a problem or question! I'd love to push for more help but there just isn't any here in some rural areas - short staffed :(

IGGIE
Aug 27, 2023 4:04 pm
Reply to DexieB

Keep pushing for more assistance, I always thought America was a million miles ahead of the rest of the world but I now know you are a million miles behind the rest of the world.

Jonaton00
Mar 22, 2024 4:10 pm

Feeling like this after surgery is a normal thing. Try to lean on your friends and family for support. You will feel much better after you start moving around. AlexT mentioned not letting your thoughts take over, and this is important. Bad thoughts make the situation you're in feel much worse than it is, and you start feeling depressed. You can use techniques like deep breathing, grounding techniques, and meditation to block the bad thoughts when they start creeping in. Try the Calmer app, it's a useful tool that can teach you these techniques. It's perfect for when you can't move out of your bed because it's always available on your phone.