Facing Ostomy Surgery: Real Talk and Hospital Stay

Replies
20
Views
923
emiliatomaszewski8
May 13, 2023 7:01 pm

I am having my ostomy surgery in 4 weeks. I am frightened to death, not only of the surgery but of the drastic change in lifestyle, and I know I am not going to even want to look at my stoma. It preys on my mind every day. While I am already disabled with compression fractures in my spine, I am angry that I now have another problem that will impede my already limited lifestyle. Is anyone else experiencing this as well? I really don't want the Mary Poppins version of how wonderful I will feel later. I want the real deal story of anyone that can identify with me. I also am curious as to how long my hospital stay will be. My surgeon says just a couple of days, but I find that hard to believe.

Riva
May 13, 2023 8:42 pm

Hi, 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. Wearing a pouch does not define whom you are. There are solutions. We're here for you. Best of luck.

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,973 members. Get inside and you will see.

It's not all about ostomy. Everything is being discussed.

Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

AlexT
May 13, 2023 8:45 pm

Well, they cut me in half, dug the cancer out, sewed my butt shut, and gave me my colostomy in 1 day. I was in the hospital for 5 days after that. Since you have 4 weeks, get with your ostomy nurse if you have one, watch YouTube videos on how to change your bag, tips, what you need or what's a waste of time/money. Push yourself to learn and make yourself do the emptying/changing in the hospital while you have help (I truly thank the nurse that made me do that). Look into home healthcare for a few weeks till you get things figured out. After surgery, get off your ass and get walking if you can, it gets your digestive system going again. Lots of fluids. My stomach was very sore and I lived on Tylenol for about a month. I never took anything stronger once I left the hospital. Ask any questions you have and enjoy your weekend.

CrappyColon
May 13, 2023 9:32 pm

Hey Emilia, I'm Jodie. I don't know the reasons for you needing an ostomy, but I was getting ready to have my colon removed last July and was pretty sick. I had to get through end-of-year school stuff with my kids, then my final goal was to make it to my daughter's dance recital and after that I was told to rest and hydrate until the surgery. Do you know what type of ostomy you are getting? If you see me online, feel free to message me. I know I've posted in a couple of different places about it but I did not want to look at my stoma. The nurses tricked me one day, and it worked. When my kids came to visit, we had talked beforehand and I'd told them they didn't have to look but to let me know if they wanted to. My son wanted to look. My daughter didn't. But once he looked, she wanted to look as well. I'd bought an anatomy doll which the dogs ended up destroying, but we never could get that darn colon back in anyways. The first time I didn't have another adult at my house to help was the first time I had a leak, and my 10 y/o was running all over grabbing me stuff. That was a 2 hr saga- it gets better. You know the good thing about Mary Poppins? Her bag with all the stuff. I bought a new purse/backpack to carry supplies, change of clothing, water bottles etc in. I way over pack, but it made me feel better. Getting ostomy supplies organized helps too. Become besties with your ostomy nurse(s), I saw them A LOT after my surgery last July. Feel free to ask anything- no question is too awkward. Another person on this site and I had talked about her messaging me from the hospital after her surgery and we did that. If that's something you feel would be helpful for you, please let me know. You'll get through this. I know you've already undergone adversity and it sucks when there is another medical layer. I think you'll find you're stronger than you know- if you want to bet on that let me know (and I like to win)

TerryLT
May 13, 2023 9:32 pm

Hi Emilia, I won't sugarcoat this and pretend that life is a bed of roses, but living with an ostomy for me is a better quality of life than I had before. As others have said, there is lots to learn, but I will say that your attitude will be what determines whether you thrive, or just exist. Life is what you make of it, ostomy or not. There is so much knowledge about ostomies now and so many excellent products to manage day-to-day living, that I can honestly say that for the most part dealing with it is a piece of cake. Once you have found the products that work best for you and learn through experience about how to avoid problems, there is no reason you can't do anything and everything you did prior to surgery. You will get used to your new body part, and if you are like me (who didn't want to even look at it at first) you might even come to love it. I'm very protective of my little rosebud, who by the way, saved my life. I had a perforated colon and would be dead now if not for the ostomy, so I'm grateful and thankful every day. Try to look at the positive side of things and you will get there. There are lots of us here to share advice and give support, so keep in touch as things progress for you. Best of luck.

Terry

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
imsafanwa
May 14, 2023 12:05 am

Well, Emilia, this stuff is no fun and you're right to be scared shitless BUT... the colostomy really did improve my quality of life. I did not realize how sick and miserable I was until now, 14 months later. Rectum removed along with about 15 inches of colon and spent 12 nights at Swedish First Hill in Seattle. The surgeon is not the most personable guy but is known as the best in the region and I feel the results are proof of this. Just try to keep in mind that you are not being handed off to some garage mechanic; these people are incredibly skilled and dedicated, and you will be helped.

Background, because I need the one-handed typing practice: 64 years old. Bad hemorrhoids most of my life, but scopes negative for cancer--phew. Then the crap started, perianal abscesses drained in the local surgeon's office what, 5 times? No anesthesia but still a huge relief. Then fistula, then a positive biopsy. Chemo (Folfox, woohoo!) and radiation was about 15 months due to infections. Had a port installed for the chemo and that failed pretty quickly due to delays. They tried a PIC line and that lasted 2 or 3 treatments. Then it was a garden hose-sized IV for a couple of months. Whatever, the objective was finally achieved and surgery scheduled. The post-surgical pain was, for me, more manageable than the previous situation. I felt better quickly, believe it or not. Leakage is rarely a problem but it can happen. My only really major one was about a month ago and I jumped out of bed too quickly and had a fall resulting in an inverted shoulder replacement. 5 days in the hospital and came home dazed to a bed that someone had shat in. I could only laugh, but I was medicated, so...

I did not prepare adequately for the colostomy and the first month or two at home was kind of shitty. Please stick around this forum and ask anything anytime, or just vent. You will be well prepared and helped when you need it.

Hugs, and call anytime.

Hisbiscus
May 14, 2023 3:52 am

Hi,

Are they giving you the stoma due to the fractures in your spine? I mean, is it causing you trouble to go to have bowel movements? If so, maybe it will be temporary and they can hook you back up reversal later?
Gosh, I'm so sorry you are going through this rough spot. Life is not perfect, I'm learning. Roadblocks can pop up at any time, and God only knows I've had my share of sufferings. One after the other it seems. What gets me through? The key is faith. Faith that the rough times will not last forever and to try and make the best of things until it passes. As for my stoma, I did want mine because I could not poop at all. It's a change of lifestyle, yes, but for me, it turned out to be a better lifestyle than what I had in pain constipated. I don't see my stoma as the enemy but the savior. The constipation was the enemy.
It's going to take you some time to get used to a stoma. I agree with what all the others say who posted a reply to your thread.
Wishing you well and peace of mind that you will be fine and will get through this.

w30bob
May 14, 2023 7:12 am

Hey Emilia, I'm Jodie. No wait, someone already said that... my bad. Listen girl... you don't have to worry about any of us candy-coating anything... we've all been through enough crap to get to this point that we've been desensitized way past all that. I've really not found much to like about having an ostomy until I read your post. Had I known I was going to get my ass sticking out of my stomach for the rest of my life, I would have been a complete train wreck, and they would have had to drag my ass into that operating room kicking and screaming the whole way... so I didn't appreciate not knowing until you brought it up. Thanks for that! The bottom line to all this ostomy stuff is that it's not paradise, but could be a LOT worse.

As was said, the hospital stay is typically 4-5 days if there are no complications, and if there are, then the sky's the limit, depending on what's going on. Pain will depend on whether they have to open you up or can do it laparoscopically. For the former, I requested the epidural and it was wonderful. On day 3, I got stupid and thought it wasn't doing much... so I had them take it out. After which I immediately begged them to put it back in... which they can't do. So your pain level all depends on how big of an incision they have to make. You'll find hospitals are pretty good at pain management, which is good since they can't seem to figure out how to cure anything these days. Hospital food sucks by the way, in case you didn't know, so don't get your hopes up. You'll receive minimal training on how to change your appliance (a fancy medical term for your shitbag and how it sticks to you), and they'll give you what seems like a lot of ostomy supplies... until you get home and screw up a few times and burn through those supplies on your first barrier change. Next Day delivery from Amazon will be your new best friend! It'll be after you open that last barrier wrapper that you'll realize you really didn't pay enough attention to the ostomy nurse who showed you how to change your barrier at home... because your mind was still reeling from the whole experience. Keep their number handy and don't hesitate to call them when you get confused or are having a problem. The longer you let a leak or issue go on, the worse it gets and harder it is to correct. And once you get to the point where you can stand to look at the damn thing sticking out of you... it just gets easier and easier. You'll have days when you'll get leaks, or do things you shouldn't because you didn't think it through first... and you'll learn as you go. It'll be stressful at times, but you'll come to realize tomorrow is just a couple of hours away and next week is just a few days from whatever day it is... and you'll soldier on. Just come here and ask and we'll get you back on the rails.

You already did one good thing, which was find this site BEFORE they re-routed your ass to where it was never intended to be... so you're way ahead of the curve. You're going to find your groove pretty quickly and then you'll be able to start to understand how your life will be impacted by your new situation. At first, it's all a bit overwhelming, but that's necessary to get you to focus, educate yourself and come to appreciate things you never gave much thought to before. Before you know it, you'll be on here sharing your experiences with newbies asking the same questions you are now.

So welcome aboard. Please keep your hands and feet in the cart at all times... the ride is about to start!! You got this!

:)

ron in mich
May 14, 2023 1:10 pm

Hi Emelia, I've had my ostomy for 30 some years and I'm glad I got it as I was limited in what I could do or places to go. I had to know where every bathroom was and as a thirty-something year old guy with a young daughter, there was lots going on and my wife didn't drive at the time. Also, no internet to look up info like nowadays. I won't lie and say it was easy as having both colon removed and butt also. I was hurting and didn't hesitate to take pain meds. Speaking of meds, I was glad to not be on any for colitis, especially prednisone. That stuff made me crazy. After surgery, I was shown once by a nurse while standing naked in the shower how to change the pouch and wafer and wash around it and that was it. Having the surgery wasn't fun but it gave me my life back and I was able to do the things I wanted to do: hunt, go fishing, ride bikes, swim, help raise my daughter, etc.

Pharmgirl
May 15, 2023 10:38 am

Good morning Emilia, I have an ostomy and I was scared as well. I'm sure we all were at some point, even if we knew this was going to save our lives. That's the key, knowing that this would literally save your life sorta changes your perspective. It was scary. At first, I was afraid to change my bag without my husband being home. (What if I should faint when I looked at it? What if it leaked all over the place? What if it wasn't supposed to look like that?) So many questions, so many what-ifs! Just like anything in life, change is scary. I guarantee you will get used to it, it may take a little while, but you will. This site is the best for asking questions, no matter how weird you think they are, or just reading other people's stories also helps! By the way, my surgeon told me 7 to 10 days but I was out in 3. Good luck to you!!

Doe1mama
May 15, 2023 4:33 pm

Agree with others that education really helps. And you can ask this group anything. I'm a retired nurse and they helped me several times with questions regarding my husband's ileostomy. He had a prior stroke so I am the one doing the care, however I was amazed how involved he is and what he has learned. This is a man who had difficulty changing his son's diaper and now he looks at and watches everything in regards to his ileostomy. Yes, the ostomy does kind of dictate certain ways or times you do things, but our lifestyle hasn't really changed at all. You'll get there.

CrappyColon
May 15, 2023 5:27 pm
Reply to w30bob

You're hilarious

Redondo
May 15, 2023 7:18 pm

Of course, I can identify with you even though for me it was almost 50 years ago. I was only 20 and newly married. I was thinking I wasn't even going to walk properly with it and definitely concerned of how my newlywed husband and I were going to accept it. It took a while for me to accept it and thankfully my husband made it easier for me to do so. I have lived a full life and traveled the world, worked a very strenuous job, and now even married again. Your acceptance will be all in your mindset and educating yourself of the best products and diet for you. Best of luck.

SharkFan
May 15, 2023 8:55 pm

Hello Emilia,

I had my ileostomy a little over three years ago, just before the COVID kickoff. I too had concerns like you. Below is a post I sent to MaO right after surgery. To this day, I wish I had the surgery sooner. I have no regrets. Since the surgery, my doctor referred another patient with a similar condition to me for support and advice. We meet every three months and compare notes and boost each other up if needed.

There will be a day soon that I hope you'll feel the same.

SharkFan

Greetings to you. I'm assuming you are here for the same reason I was on January 6, 2020. On that date, I went to my GI for a sigmoidoscopy. I had been dealing with UC for 16 years or so. I was on prednisone on and off, 6 straight years in one instance, Remicade, Entyvio, Simponi, and most recently Xeljanz; I was even offered a chance to join a clinical trial. These drugs caused a variety of problems such as insomnia, "moon face," and most recently rosacea. I grew up with acne until my 20s, and it resurfaced at 57 years old. The rosacea was worse than any condition of acne I'd ever had. I'd been thinking of surgery for the last few years as there were no other "wonder drugs" if Xeljanz failed to work.

In the summer of 2019, my local baseball team, the Oakland Athletics, traded for a pitcher named Jake Diekman. Jake had been in town for a few weeks when he was interviewed about his foundation called "Gut It Out." It turns out he had an ileostomy a few years earlier and wanted to bring attention to IBS and its stigma. I checked out the webpage and saw that Jake was posing with his bag attached and wearing a "Gut It Out" t-shirt. Needless to say, I bought the shirt and thought, "If a Major League pitcher can play with a bag, I can live my life with one." Thanks, Jake, for being an inspiration for me and others.

Now, back to January 6. Prior to the sigmoidoscopy, I met with my doctor and told her that "I can't trust my body anymore." The sense of urgency was coming far too often. I was still able to work without bringing attention to myself, play golf (stopping at every outhouse), and get around. I did bail on friends numerous times during the holiday season. I would go to the bathroom 6-8 times in the first 1 1/2 hours after waking. Trips to the bathroom would then be every two hours or so. My symptoms caused inconvenience to me. However, I would later find that they were nothing compared to the many others in the "Meet an Ostomate" community. The sigmoidoscopy was done, and the doctor returned to my room to meet with my wife and me. She told her there was nothing else she could do for me. I was being referred to a surgeon. This was a strange relief.

I met with the surgeon who told me I was going to have an ileostomy and proctocolectomy. She explained what these were. I then went online and found "Meet an Ostomate," "VeganOstomate," and "Let's Talk IBD" on YouTube. I was, and still am, amazed at the way people open up about such a private condition. Learning from others who have been there is huge. This knowledge gave me intelligent (I hope) questions to ask the medical staff and a feeling of what to expect. People's stories of pain, disappointment, and frustration prepared me for the worst. I was contacted by member PETey 13, who offered to send me a variety of supplies. Other advice was to wear a pouch for a day or so in order to find a prospective stoma placement and to see what wearing a pouch was like. I did this and found that it wasn't as bad as I thought it would be. My daughter came over for dinner that night and didn't even notice I was wearing the appliance. This was a great relief. As I've been told, no one will know I'm wearing this unless I tell them. I also found a few books about the procedure and people's struggles with IBD, etc. If you have the luxury of prior notice, and it is a luxury, use it to educate yourself. There are plenty of members who went to the hospital for stomach problems and woke up with a stoma. No prior notice, no prior preparation, and plenty of pain. I consider myself extremely lucky and admire the strength of those of you who woke up in pain, surprised, and confused.

The days prior to surgery were kind of strange. A lot of friends and former co-workers are aging. I lose about one every couple of months (I also run with an older crowd and worked with a large group). I began wondering about my own affairs. Things like passwords for computers, bank accounts, online bill pay, etc., needed to be written down for my wife. I'm also an officer with a charity and wondered who would inherit my job if I were to pass. I wrote down a list of contacts, duties, etc. It then got weirder when I thought about what my final services would be like. As a family, we've casually and jokingly talked about this. I noted what songs I'd like to have played, who to officiate, etc. This also was a chance to write down a little note to my kids and wife giving them one last piece of advice and telling them what they mean to me. I bring this up in the event you have the same thoughts and concerns. I'd like to think they are common. If you too have had these thoughts and don't think it's normal, at least you know you're not alone. I had never had surgery and found myself suddenly concerned about "what if." I placed this in an envelope, marked it "in case of the worst," and put it in our family trust binder.

The day before surgery was the traditional bowel prep. It seemed to take better effect than those in the past. I started it earlier in the day than normal. As much "fun" as it was, I kept telling myself I'd never have to do this again. I made it through the prep, drank my broth, showered with Hibiclens, and tried to sleep. Laying in bed all night watching reruns, it was soon time to get up. Time for another shower, then off across the bridge to the hospital. I went to the hospital with my daughter and wife. We checked in at 6:00 am. The waiting room was packed. It was kind of concerning that so many others were going to have the same type of day as I was. I was next led into the surgery ward and given more antiseptic towels to wipe down with. I changed into my paper gown and went to the bathroom as my gut was really rumbling. I tried to go but couldn't. I wiped myself and had a funny thought, "I'll never have to do this again. Our budget for toilet paper will be cut in half at least." I went back to my daughter and wife, and we had a good laugh.

A short time later, the surgeon and surgery team came in and introduced themselves and told us what they were going to do. I was wheeled out and said, "See you in a while" to my wife and daughter. We entered the OR, and I saw everyone I just met. I was lifted onto the surgery table. The table was something out of a sci-fi movie. Nothing like a traditional bed. I was lifted onto this, and that was the last I remembered. I awoke about six hours later in recovery. My joints were stiff and aching. I was told to keep moving them, stretch as much as I can, that it will get better. I had laparoscopic surgery and was told that gas was pumped into my body cavity. The pain was due to residual gas. Once that pain went away, I felt pretty good. No pain in the throat, no tubes down my nose, and no headache, all of which I was prepared for. A nurse asked if I had any questions. I had just one, "What's my roommate like?" I realized how lucky I was compared to the many others that I have read about and received advice from.

I went in on a Thursday and was told that I would get out on a Monday. Meals during the first night and following day were broth, broth, and more broth with Jello thrown in. My bag was filling about every 2-3 hours. Just what I was told to expect. I was also told it would slow once I started eating real food. I was cleared for a low-fiber diet. After eating and watching my bag, I saw that solid food was not necessarily helping. I was ready for bag emptying every two hours or so. This was being confirmed. My biggest concern was not being able to get enough sleep after leaving the hospital. One of the side effects of the prednisone I had taken was insomnia. I had since been placed on prescription strength sleeping meds. Even with these, once I wake up, I stay awake. Having to empty a bag every few hours at night was a big concern. Not having the discharge slow was disappointing.

I met with doctors the next morning. I was told I was doing "amazingly well!" This was told to me by all of the different doctors and nurses that worked on me after. I was told that I would be leaving a day earlier than expected if I'd like. After surgery, when I went to my room, I began calling friends, parents, and family. They couldn't believe that I just came out of surgery. This was a shock to me also. I bring this up not to "pat myself on the back" but as a thanks for all who had posted their experiences. As I said earlier, I'm very lucky, fortunate, etc. The knowledge that others gave me prepped me for the worst. Maybe it being better than expected was a sigh of relief. I know there are rocky roads ahead.

As I was leaving, I was asked if I wanted a flu shot. I usually get one, so I took the shot. BAD mistake. I returned home and spent the night nauseous and wondering how much it would hurt if I started hurling. I had one dose of Zofran left from pre-op. My advice, if offered the shot after surgery, pass on it.

Once home, I began drinking as much water and Gatorade as I could hold. I couldn't get enough. All the literature says have 6 small meals instead of 3 large. I'm not a big eater as it was, so I didn't pay much attention to that. As a result, I became "high output." My bag was filling with a coffee-colored liquid every couple of hours. I was contacted by a follow-up nurse who explained what fewer meals would do for me. I had potatoes with dinner. The change was noticeable within a few hours. I was also given the advice of not drinking water alone. I added juice to the water so that it would pass through my system slower and "bind" easier with the contents of my stomach. I still can't understand the mechanics of that. It works, so I'm going to continue on with it. Just having a handful of pretzels, rice, etc., makes a huge difference. The output is now thick and much reduced.

Getting back to the subject of sleeping, here are another few things that have happened. My second night at home, after the stool started thickening, I went to bed and set my alarm to go off in 2 1/2 hours. Expecting to wake up at 2:00 am, I woke up at 4:15. I expected to be laying in a mess. Fortunately, my bag was half full. I have since set a secondary alarm to go off 5 minutes after the first in the event I turn off the first alarm instead of waking up. What I've found is that bag emptying is not necessarily a time-consuming event. I have a little routine of laying out toilet paper, containers, paper towels, etc. I can get this all done in under 5 minutes. I was even able to get 5 hours this morning.

Stoma output was a question I had. I have read how others plan their meals earlier so that they can get an empty in before going to bed. For me, the process of passing heavier output takes about 4 hours, providing I eat enough starches. In this short time, the consistency has gone from nearly all liquid to an oatmeal-like thickness. While thicker and heavier, there does tend to be a lot of output remaining in the bag. I'm able to rinse the bag to clear this fairly easily. I've been shown how to wipe the bag with toilet paper as well as wet paper towels. I'm still experimenting with each method to see how careful I can consistently be.

I'm wearing the Hollister two-piece system. This is what I was sent home with from the hospital. I work a job where I wear equipment on a belt. The two-piece system allows for horizontal wearing of the bag. This method, along with a support belt, is what I'm expecting to wear. I also bought a cheap electric razor for shaving before barrier placement.

I have showered every day since surgery. I use no cover. The barrier gets wet. That didn't seem to bother the hospital staff. Since returning home, I have dried the barrier and bag with a blow dryer. I have developed a rash around the barrier and hope that drying it may help. My ostomy nurse also has me using powder.

Odors and gas: Yes, I still fart. It just comes from my stomach and with no warning. I know there will be a day when I recline in the dentist's chair and let one loose. I've had the same dentist for nearly 40 years, so he'll understand. I have found that the odor of discharge isn't a fecal type. I had fish one night, and the bathroom filled with that odor when I opened the bag. Nothing offensive, but if you're in a public facility, it will seem to all that they just walked into a fish restaurant. Other discharge has been similar in odor to a kale, spinach, protein powder type of smoothie.

My rehab plans are to walk on a treadmill a few times a day, working up to a slow jog in about a month. I told my physical therapist I want to be playing golf in two months. He says he'll get me ready for this. In the four days I've been home, I found it's really easy to just sit and let the day pass by. I hope to not get in this habit. I'd like to be back to work within 6 weeks.

If you are still with me after this rambling, thank you for your interest. Hopefully, you got something out of this. I know that I did by just typing this out. Once again, a big THANK YOU to the "Meet an Ostomate" community. I just signed up for the lifetime membership as my bag isn't leaving till I do.

Good health and thoughts to all of you,

Shark Fan

4 likes ?
edit

Nungsr
May 16, 2023 12:03 am

Hello, you will be just fine. I thought the same like you. I have had my permanent colostomy for 2 years now. It hasn't really changed my way of life. I'm just more aware of my issue. You will think everyone is looking at you, but they are not. Only the people who you want to know will know. Make sure you get a good support system and stay on top of the best or better suppliers for your supplies. Take it slow and just learn what works for you.

BobMac21
May 16, 2023 1:22 am

As other people on this forum are saying, now is when you learn all you can about the surgery, aftercare, and appliances available. There are no silly questions. It's natural to be afraid; it's major surgery, and since I also have spinal damage from long-term Prednisone use to control UC, I can get that you feel overwhelmed. I had a choice of surgery or bleeding to death. It hasn't been wonderful in the years since with adhesions, blockage, and follow-up surgery. But I am living my life each day, coping with what comes, and that's probably true for everyone who has gone through a sort of private hell with health issues. You WILL get through this; don't be afraid to reach out. There are others who can offer support and advice. I wish you the best, know that you are not alone.

emiliatomaszewski8
May 16, 2023 6:26 pm
Reply to AlexT

I do have an ostomy nurse who is very kind and I will be seeing her on June 7th so that she can mark the spot where my stoma will be. I appreciate your encouragement. It's like no one gets it unless you have had it done to you. That's why I joined this site. I do need to get off my ass as soon as possible after I come home. I have a back disability that is going to make this tough. Thank you again for reaching out.

AlexT
May 16, 2023 6:37 pm
Reply to emiliatomaszewski8

They will get you up and walking as soon after surgery as they can. They had me up walking the hallway about 4 hours after surgery. Then, after that first night, they had me up about 3 times a day while I was in the hospital. I got home and would go for short walks in my neighborhood or just up and down my driveway a few times. Your ostomy nurse should go over how to change your bag on a model stoma with you. Get on YouTube and watch videos on how to change/empty your bag. Most of the nurses in the hospital will only have a vague idea on emptying/changing your bag, push yourself to learn while you have their help, it's much easier than once you get home and are on your own. You have the time right now to become familiar with what it will be like before you actually have to deal with it, use this time to educate yourself. OH, most importantly, smile, it's just pooping in a bag. Not very many have the skill or accuracy to do it. The sun will continue to come up, the birds will still sing, and you'll be just fine. Have a good one.

jetthumb
May 30, 2023 5:42 pm

If they can do the surgery laparoscopically, it's not so bad. I've had mine for about 1.5 years. I liken it to having a toddler who isn't toilet trained. You can have some sense about when you're going to need to empty your bag, but sometimes it happens unexpectedly or at inconvenient times. I'm getting chemo every other week for incurable cancer (which is why I needed the ostomy). So I empathize with the chronic condition issue you brought up. There are some days when I feel like I could deal if it was 'only' cancer or 'only' an ostomy and that having both really sucks. But if I didn't have the ostomy, things would be worse and my diet would be way more limited. You get used to having a more intimate relationship with your poop. If you've ever had to change diapers, it's about the same. You're cleaning up poop and worrying about the equivalent of diaper rash. It seems horrible at first, but then you just get used to dealing with it.

Feb9HH
Jun 09, 2023 3:47 am
Reply to emiliatomaszewski8

Yes yes yes to YouTube videos. When I got home from the hospital after 22 days, I watched every video I could find. It was so helpful to me and really built my confidence.
It is really hard to look at it at first. Now it doesn't faze me a bit. My surgery was a surprise surgery. I remember when they came in and marked my abdomen for the stoma location. I just thought, how am I supposed to know which is the best side? I chose the side opposite my dominant hand. Seems to have worked out fine lol. You will build confidence and a sense of humor. It comes with time.
This site is awesome with great people to help with all your questions. You are going to feel a lot of different emotions. It will balance out. Surgery is major and it takes a little time for the body to bounce back.
You aren't alone. Don't forget that.

CrappyColon
Jun 15, 2023 10:05 pm

Just checking in to see how you're doing. Surgery is/was now-ish, right?