500 ostomy questions - Quick

I am 26 and have posted a few times on here. I thought my appts were going steady to get me in for the colostomy sergery but due to timing I will be going in Monday morning to the ER to check in and get admitted. Not sure how many days I'll sit there until the surgery actually happens.

Once I wake up, I have no clue what to expect. Drs haven't been much help as they just say "everyones different"

-how soon will I be able to sit up on my own? And the standup.
Then obviously comes walking somewhat comfortable.

-I am a small female, 26, 5'flat and typically 105-110lbs although I'm only at 95lbs at the moment :(. Will I stay my regular size or is it known to gain or loose weight?

- they say I'll eventually be able to swim and whatnot, but about how long through recovery were y'all able to swim comfortably?

-how hard is it to change/empty your bag?

-for all you FEMALES out there: and I going to need a whole new wardrobe? Will I still be able to war the same jeans (I'm not one who wears them skin tight but also not too baggy either)

Please help!! I am terrified and am looking for as much info As possible before hand.

Please add anythng else that I may have forgot as I'm sure there are a billion more questions that will pop up

Thank you tons
xOXo

Hi Rita, thank you very much for the quick response, I really appreciate it. I won't be able for the j pouch but hoping for at least an ostomy with irrigation through the stoma so I won't have to wear a bag, but we'll see. 20lbs? That's scary in 3 weeks. Is that from eating smaller amounts or the days after surgery where u had nothing?? I hope your recovery continues to go well! I hope to hear more once a little more time passes. It's good to know I'm not out there alone, which is how it's felt for so long!

Thank
xOXo

Hi ltlmisst, I had surgery 2 1/2 weeks ago and it was done lapro so my experience may be attributed to that. So I was up and walking the next day after they took the catheter out also was put on clear liquids that day was eating food 2nd day post op, mind you everything that's mushy which you'll want to stick with for 6-8 weeks it's called low residue. Swimming is usually allowed after healing period 6-8 weeks doctor will ok. Because you are so young I believe your healing will be under way quickly the only thing that might slow it a little is the predisone but you will see strides of recovery every couple of days. I was just out of surgery worrying about my clothes but I can wear them and as time goes on they'll fit more comfortably. Did you get sited for your stoma and where will it sit on your abdomen? So as far as the emptying and changing the appliance, I was emptying in the hospital myself as soon as I was able to get up and did the first change in the hospital with the nurse. It is different for everyone so don't worry there is a huge learning curve with this and it takes time! ;-) I'm in the phase of trying different brands and types so as I've read and been told it takes a couple of months to figure all out. I keep up on reading on here and asking questions when I need help because the woman on here give great advice and support and I'm glad I can be apart of that! ;-) SO DON'T WORRY YOU ARE DEFINITELY NOT ALONE!!!!!!! ;-) you will be ok and I will say a prayer for you!!!! Keep us posted on here how everything goes!!
Dee

LtlMiss T, You sound like your are ready and have a good attitiude.

All the advice that's been given is ditto from me. Get lots of rest at first and I ate lots of soups at first. I didn't loe wieght after surgerybut did get back to normal wieght because I was low before the surgery.

Tight stuff is hard because it touches stoma but that toughens up with time. Just keep everything and put things on to check and see how they feel. Only got rid of short t's and htey are out of style now anyway!

I swam within 3 months and it felt sooo wonderful. Now am back to triathlon racing and very happy. Won't say it's all easy but life is better this way than so sick.

Keep us updated, and walk, walk, walk to help the healing.

You've gotten good advice so far! I was 25 when i had my colostomy due to a perforated colon, no warning, just boom! you need surgery stat! I was in ICU for 3 days after surgery because of that, but once i left i was walking almost every 2 or 3 hours because the more you walk the faster you heal and the faster you can get out of the hospital, and believe me you will feel much better at home and heal faster than you would at the hospital. I couldn't sit up on my own after the first surgery for 5 days, but my second surgery i was healthy going into it and walked and sat up by myself same day. Don't push yourself too hard at first, just push a little. You don't want to try something you aren't ready for and bust a hernia. I had assistance walking after I got home with a walker for a few days and needed help getting out of bed and showering, but you want to test what you are capable of just do it when some one is around in case you fall over or something =P

Hopefully they sited your stoma so its going to be in a good place. You can wear anything though even if its not so awesomely located. Mine was right by my belly button and no one ever knew i had the bag and I didn't buy any new clothes (that I actually needed anyway lol.) I wore high waisted undies and camisoles to keep everything flat. 4 months later I even went to a formal new years party in a tight tight black dress and danced my butt off. No worries there!

I have no experience with swimming as mine was preformed last September and I got reversed last week. But as others have said, depending on how you feel, usually 4 weeks and you should be ok as long as everything is closed up.

It took me about 6 weeks to learn what worked for me as far as bags and finding out that kneeling in front of the toilet was the best way to empty and then swish it out with water. While you are in the hospital, if you can, go to edgepark.com and request a catalog. I found it to be the fastest way to browse for new things to try and I used them to get all my stuff. then go to all the main dealers websites, coloplast, hollister, etc and order samples or call them to do so. You'll find what you're most comfortable with. and what works for your skin, but it takes some time just cause there's so much out there to try! And remember, leaks happen! You'll have a WOC nurse, use them to the fullest!

You won't be able to eat anything for at least the same day as surgery, maybe the next as well, then they will wean you onto fluids and soft stuff. Sometimes they mess up and give you food right off the bat. DON'T accept it! Insist on going through a day of fluids first. Hopefully that won't be an issue you have to deal with though. (A friend's mom who had never been in the hospital, had rectal cancer and was given a hamburger same day as her surgery, didn't know any better, ate it, and got a hernia from vomiting and then had a 6 week hospital stay to fix it.)

initially you may lose weight, but like the others said, you'll regain once your eating and may gain too much cause you're going to feel so much better!

Just a suggestion, but you may want to request a PICC before surgery if you can, because you will probably be in the hospital for about a week and they will mostly likely take blood everyday and if you are like I was and anemic, your not gonna give up that blood. I had one before all my surgeries and will never ever go to the hospital knowing i'm staying for more than a day and not get a PICC. I love them. Also, take your own pillow with you, stuff to keep you busy and earplugs. They are a godsend to blocking out all those noises. If you have a computer you can take with you you can browse around the forum and get some questions pre-answered, and see others' stories. You are not alone! We're here for you and you'll be in my prayers! Good luck to you!

Good luck with your surgery. These are all really great questions. It is too bad your docs haven't given you better answers. Yes, everyone is different, but there are definitely some "norms".


-how soon will I be able to sit up on my own? And the standup.
I had a lot of pain, but I still tried to sit and walk right away. Sitting did hurt some, but not too bad considering that I had staples in my bum (I had my anus sewn shut as my ileo is permanent) and the first night I had to have the nurse help me roll over in bed. Ouch! That, really really hurt. I got sort of spacey though and sometimes forgot to push my pain med button on schedule. Remember to push the button if you have a pump:)

I walked the first night and about 4 times a day over my entire stay. It hurt, but wasn't unbearable. I did have trouble standing up straight because it hurt my incision. I know this wasn't good for my back, but I couldn't help it. Eventually when the pain subsided I was able to walk straight and tall.

I had some incision complications (which I have posted on in some recent threads) so my pain was a bit up and down over 4 months. This is not the norm however.

-I am a small female, 26, 5'flat and typically 105-110lbs although I'm only at 95lbs at the moment :(. Will I stay my regular size or is it known to gain or loose weight?

I went into surgery on the light side. I am 5'8 and normally weigh around 130lbs. I went into surgery at 119 lbs. and didn't lose any after the operation. I weighed myself this morning at around 7 months post-op and I am 121lbs. I am not worried about being a bit underweight though because I feel really healthy and strong. Things will stabilize eventually.

- they say I'll eventually be able to swim and whatnot, but about how long through recovery were y'all able to swim comfortably?
I swam at around 6 months, but again, I had incision healing woes and couldn't be submerged in water much before that. Now that I am swimming, I have absolutely no problems with my appliance sticking and can wear a tankini swimsuit without anyone knowing I have an ostomy. I am super active and do lots of outdoor sports. Once I hit 6 months post-op, I was able to get back to most of my activities (easing into them slowly of course). I will be able to do everything once I heal up a bit more. You can check out my blog to see the things I am up to post-op. There is link for it in my profile.

-how hard is it to change/empty your bag?
I think emptying the bag is pretty easy. I was doing it right away at the hospital once the nurse showed me how.
Changing is a little harder. It took me about 8 weeks to get it down and sometimes I still get frustrated because me stoma likes to output very unexpectedly which can make changing take longer. Still, it is pretty easy and a small price to pay for feeling utterly amazing again. It takes me around 30 minutes, but I am perhaps more meticulous than I need to be:)


-for all you FEMALES out there: and I going to need a whole new wardrobe? Will I still be able to war the same jeans (I'm not one who wears them skin tight but also not too baggy either)
I wear everything I did before and even have a pair of skinny jeans. My jeans are mid-low-rise also. Sometimes when I want to feel extra confident that my pouch isn't showing when I wear something tighter, I put on a pair of higher waisted undies that are designed for ostomates and hold my pouch really close to my body. Or I wear a wrap by the same company (Comfizz). Most of the time though I just wear my normal Victoria's Secret hiphugger undies. They rest below my pouch and I just let it hang over the top of them. I also wear a normal swimsuit (Nike Tankini) with an Ostomy Secrets swim wrap to conceal the top of the pouch since the swim bottoms are extra low-rise.

That said, it did take a while to get there. Until my incision was healed, I wore looser bottoms.

Stoma placement is key. Do not forget to bring your favorite jeans with you and put them on when you get your stoma marked. I imagine that when you are in the ER, you will be in a hospital gown, but insist that you put on your regular pants for this meeting!!! Insist!!! It is the most important thing you can do if you want your clothing to work with your stoma.

Please help!! I am terrified and am looking for as much info As possible before hand.
It is natural to be terrified. Let yourself feel the fear and grief while looking forward to a healthy future. I can't even put into words how much better I feel after this surgery. It is unbelievable and beyond all my expectations. Even with slow healing and complications, I am so, so, so glad I had this surgery.

My biggest advice is to live in the moment while you are healing and try not to worry too much about the future. Even with complications, with the help of your doctors and nurses, things work out in time. Be patient. There will be lots of opportunities to figure things out, find the right appliance etc. No need to stress yourself out trying to figure it all out at once.

Keep asking questions and good luck!
Please add anythng else that I may have forgot as I'm sure there are a billion more questions that will pop up

Thank you everyone!! All of your answers are helping more than anyone else can!

Blueheron- there aren't enough words to thank you for your response and link to your blog. I am (was) a very active and outdoors person. Not really backcountry and hiking but riding horses, snowboarding, wakeboarding, softball and much more is what my life consists of and what I plan and will push for to continue. So reading your blog has helpled me a lot thinking into my future. I actually work at a ski resort and was very scared of how that might go with my situation but after seeing the video and reading about your trips, im not too worried now!! I have a few more questions for you. You said the placement of stoma is key. I have heard that a lot but no one really says where. All of my jeans rest about the same place. Considered low rise but because I'm so short they rest a little below my belly button. Where do you recommend the stoma actually be placed? Higher up or low (like an inch or so higher than where the pants rest)?

Thank you so Much in advance!!

You will be just fine! Everyone here is so supportive and wonderful. I couldn't have made it without such wonderful advice I received here.

I had a rough month or so, I had a colectomy, ileostomy, hysterectomy, and a diagnosis of ovarian cancer, stage 3C. Wasn't prepared for the last two...when they started my surgery, 30 minutes into it they came out and told my family. All that said, I feel SO much better than I have felt in years. I am going to beat cancer, and enjoy my life for a long time! I LOVE having a bag and being able to control when i go to the bathroom! I have a new life...and you will too!!

Mollie

Thank you again everyone!

Yes Heidi, the explanation of the stoma and hip bone makes perfect sense since I a fairly thin as well (too thin for what I'm use to right now. Hoping that changes a little once the healing begins :)

My surgery will be permanent as well, no chance for reversal. At this point that is ok because I am so sick and tired of being so sick and tired all of the time. Finally ready to actually enjoy the rest of my twenties and beyond without the daily fight!!!

I'm sure there are so many more questions that I will come up with but between you and everyone else, I am feeling more and more at ease going into this along with recovery and a positive life after healing!

Thank y'all so much. It means so much to me!!

xOXo,

Tracy B.