Surgery date!

Good luck with the trip home! It was a seven-hour ride for me, and it felt like an odyssey.

Kanva I do not know how you went 7 hours!! That’s a lot. Finally made it home though and feels nice! Thanks woogy! =)

Got some sleep finally last night but kinda weirded out by how my bag only needs changed like 2 times a day?? I make it through the whole night change it in the morning then change it again in the afternoon. It’s pretty thick (like a babies diaper) I thought I was going to be changing it more unless it’s still just adjusting, it was like this in the hospital as well and they didn’t say anything about it. I keep thinking about blockages but really have not eaten anything to cause that. My stomach and stoma makes a lot of noise (gas) so there aren’t any decreased bowel sounds. There’s no distending either. I have definitely been a lot lazier today than I was in the hospital. I am trying to taper off the pain meds. I’ve been getting dizzy when standing up for long periods of time and my staples are starting to cause discomfort. I thought I was doing good but now having second thoughts.

Only emptying it twice a day not changing, they told me to change it every 3-5 days or whenever the water starts coming off. I do have some cramping in my lower right side but I’ve had that since surgery and even when I mentioned it at the hospital they didn’t seem concerned. I’m just concerned about the emptying part as people keep saying they have to get up 3 times a night to empty and I don’t even have to empty that much in a 24 hour period. I’ll keeo drinking water. I drank a glass of grape juice just in case.

I don't like when the bag is too full either. I feel like I was a chronic emptier. it's not good to be that way either, it creates more work. Good to empty when it's actually needed. Just keep an eye, stay hydrated. 2x a day is definitely not enough, but champ is right, meds do bind you up. I would get up maybe once in the night to empty, but it depended how i was eating. If I ate a lot, and late, I would definitely get up. Sometimes I would get up and it was mostly air. My bag always got full of air. That was annoying. I used to try to "burp" it, but a few times I had complications of doing that. I am not sure why I dealt with so much gas... I heard that is minimized over time. I think you just have to be honest with yourself, if the pain on your right side becomes an issue, get seen by your surgeon, but it is very possible it's normal surgery pain. When do you go back for a follow-up?

My impression is that too much output is more of a concern. It sounds feasible that if you’re not eating a lot and still on pain meds, you may not have a ton of output. Definitely keep on top of hydration ... I make myself drink 70 oz. a day, and I measure it to keep myself accountable. Also, remember that everyone’s body is different. When push comes to shove, you usually will know when something is really wrong.
As for standing up for too long, I have been struggling with that a bit since coming home. I have a two-story house, and before surgery I could run up the stairs two at a time. Now I have to go slow, and even then my heart is racing by the top. And showers are hard. Seems like they should be so simple, but I’m shaky by the time I get done. I think it’s just the body’s way of reminding me I need to take it easy. I try to move a little more each day.

Funny I feel my legs dragging as I go up any steps. Walked home from dentist yesterday. about a 6 block walk. Trying to do one thing each day that gets me out of house. Nothing that takes too long. And I always drink some fluids before my journey. Going to supermarket,going to get newspapers,going to get bagels, anything that will have me moving should help my endurance

Keep taking things slow Mak. Especially since yours was an open surgery. As for emptying the bag, mine has been abot 5 times a day. Doc said output was a little high so gave me immodium. The amount of air in the bag is annoying. The PA said it will adjust but if I still have a lot I can get bags with a filter that release the air on its own. I may look into that if it stays this bad.

Taking a shower made me feel a million times better. I think yesterday was so rough because I tried to not take any pain meds even though I needed them. I just don’t want to depend on them for anything. But I’ve started taking more of Tylenol instead of the oxycodone. I’ve been eating more now I think the reassurance from all you helped a ton! I think I was just panicking over little things and over thinking. I do have a lot of gas but can’t help but to laugh about the funny noises it makes haha. I may need those bags with a filter as well. NSSG said something about burping her bag when she had it, illl have to look that up to see what exactly that is! My gas has cut down a lot today though, I am usually just pretty gassy in the mornings when I wake up. I changed my bag again today, my stoma seems to “mind”. It stays quiet usually until I put the new bag on (knock on wood). I walked around more today and I just am going to have to accept that it will be a long recovery and I can’t just bounce back like I thought I would! Thanks everyone for all the advice it is deeply appreciated!

I just turned 20 in November, I was in the hospital for 15 days in November and then I was at the hospital for 12 days before the surgery (15 days in total). I was very sick going into surgery, I was down to 92 pounds. The steroids weren’t working at all and because of me not eating my INR was at a 7 which made me bleed a whole lot! (It’s supposed to be 2.5) they had me on antibiotics the whole time before surgery though to make sure there were no infections at all so I think that helped some. I only have 24 staples but it still goes up my whole abdomen, the doctor told me I would have a 9 pack now instead of 6 pack lol not sure if that means he messed up or what but that will look a little weird. I started eating more today, I eat breakfast and then a small lunch, with a snack before and after and tonight I am going to try to eat a bigger dinner, I find eating helps as it takes away the hunger pains. Have a lot of pain in my back from having to hunch over either the staples but that will go away as soon as I’m moving around better. Thank you for the encouragement! =)

Yes it is so weird not having symptoms of UC, I wasn’t officially diagnosed until I was 7 but when they diagnosed me they said I had it my whole life. It is sooooo nice not having to worry about a bathroom or flare up now! I can finally have the full life I never really got, I’m happy I got my surgery because I have so much to look forward to! I wish they would’ve done it sooner!! Never really knew what “normal” felt like until now. The stairs get me too, my calves get a little cramps and heavy when walking on them but I try to go up and down then a couple times a day! You had UC for a very long time, I know you must be relieved!! I don’t think I would’ve ever made it that long!

Mak37 said...
Yes it is so weird not having symptoms of UC, I wasn’t officially diagnosed until I was 7 but when they diagnosed me they said I had it my whole life. It is sooooo nice not having to worry about a bathroom or flare up now! I can finally have the full life I never really got, I’m happy I got my surgery because I have so much to look forward to! I wish they would’ve done it sooner!! Never really knew what “normal” felt like until now. The stairs get me too, my calves get a little cramps and heavy when walking on them but I try to go up and down then a couple times a day! You had UC for a very long time, I know you must be relieved!! I don’t think I would’ve ever made it that long!

You are a very brave and strong woman Mak. I am happy you're already feeling so much better and more capable, and I hope you continue to feel well forever. I know when i was struggling, it made life very difficult. Surgery to me, seemed like the worst thing in the world, I put it off way too long. Grhas surgery before I gave up that time. Maybe I could have changed my life in a positive way if I were able to work to my full capacity instead of making excuses, and accepting that I was sick. I am happy you're young and able to recuperate quickly. You have your whole life ahead. A life that will be much easier without the limitations of UC, drugs, doctors, expenses.

We are here for you. So excited to see you get through this and feel better for the long-term. I am always here for you. On here, and on email if you ever need me. *hugs*