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Posted 5/2/2013 4:28 PM (GMT 0)
Yay Liz! Sounds like you're doing great, keep it up!
Posted 5/3/2013 2:14 AM (GMT 0)
Liz,

So happy to hear you are feeling a bit better!!
Yeah, butt burn stinks..literally..lol..anyway... take it easy on your body. Rmember this is now the 2nd major surgery you have had in a not tooo long of time, so it may take you just a few more days to bounce back, so don't think that butt tube it is a T-I-G-G-E-R tail!
Rest when your body says it need it, adn take it slow :)
Keep up the good work
Posted 5/3/2013 11:12 AM (GMT 0)
My hat is off to all you two steppers... I still can't believe how hard this one has hit me. It was a looooong night. I finally got the cath out and managed to pee on my own twice, so that is a relief. Butt tube is staying in for 4-5 days, ugh! Doctors came around this morning and removed the outer dressings from my incisions. The long one (horizontal bikini cut) looks OK (I only glanced at it... figure there's no reason to see it at its worst) but it is SO SENSITIVE. Any touch anywhere near it makes me shiver uncontrollably. The WOCN is coming by later today to change my wafer, I hope that I can tolerate that OK. She stopped by yesterday to take a look -- this one is definitely smaller and more flush than my end ileo, but she said it is way less flush than others she's seen on the ward so with a convex wafer (never used one before) it should be OK.

Measuring teeny tiny improvements... This morning when I got up to the go to the bathroom I was able to get in and out of bed without help (my mom had to lift my legs yesterday) so I'll call that a success. Last time I felt GREAT for the first few days, then I had two really hard days, then I felt better and went home. I'm just hoping these are the hard days and it's going to get better... it's hard to imagine dealing with it if it's going to get worse :( I can't believe this is only my second day, time is just creeping by.
Posted 5/3/2013 12:36 PM (GMT 0)
Hang in there...hope each passing day has a lot of improvements to take notice at.
Posted 5/3/2013 3:19 PM (GMT 0)
liz- put some headphones on with nice music, hit the pain pump button, and close your eyes. You will get through this. Don't look at things in days yet. Just try to give your mind a bit of rest. that 2 out of 3step surgery was a doozie for me too. So just put your head back, close your eyes, and try to think peaceful thoughts.
hang in there
Posted 5/3/2013 11:34 PM (GMT 0)
Hey there!

As ddd45 said, headphones + classical music + an eyemask helped me in rough situations.

Are you using a support belt? It helps tremendously especially when you have to cough or sneeze.

Stay positive! You will be feeling terrific in no time :-)
Posted 5/4/2013 3:21 PM (GMT 0)
Thanks guys :) Friday was rough. Feeling a significant improvement today. I'm on sips of water and juice and stoma is still producing nicely. Output was a little too high Thursday-Friday (1100 cc) but Friday-Saturday was down to 750 cc, so that's a relief. I'm still not particularly mobile but it isn't a Herculean effort every time I need to stand up anymore, which is great because with the IV fluids plus sipping by mouth I am peeing a lot!

Epidural and rectal tube are supposed to come out tomorrow, hoping for full liquids as well, maybe solids on Monday. No rush.

I've looked at my horizontal incision a bit more than I intended to and it's making me sad. I know it will heal nicely but right now it looks like a giant chasm, sigh. Just trying to forget what's under my gown for now.
Posted 5/4/2013 3:23 PM (GMT 0)
As the tubes come out you will feel so much better!

The scar will heal in time...try not to focus on that.
Posted 5/5/2013 8:26 PM (GMT 0)
Pain has improved soooo much, can't believe it. Epidural came out this morning -- I took one oxy to bridge the gap (last time my epidural came out I had horrible pain that took forever to get under control), but since then it's just been Tylenol and seem to be doing OK. Rectal tube remains until tomorrow. I am so hungry that I'm just sitting here doing Google image searches and looking at food :) The surgeon is super conservative and says I might get dinner but he might prefer to wait until tomorrow. We'll see when the trays come out -- the woman who delivers the food has started apologizing whenever she brings my liquid "meal"! wink

UPDATE: LOL. The residents just walked in to tell me I'm getting dinner (yay) and my stomach growled SO loudly. I instinctively kind of covered my stomach and said excuse me and they were like, "Yeah, sounds like your bowels are awake." Hahahaha!
Posted 5/5/2013 10:29 PM (GMT 0)
That's amazing! That first real meal tastes good no matter what it is wink
Maybe you can sneak out something better from the cafeteria, I'm sure as hell that's what I would do smilewinkgrin
How is your walking going btw, covered any "new grounds" ?

Edit: That reminds me. During my last stay, when my hospital roommate was 5 hours after surgery he pleaded doctors to let him eat something. After he was told that he can't eat anything for 2 more days, as soon as they had left he pulled out those 2 huge schnitzels and ate them like a savage LOL.
Suprisingly he was fine.

Post Edited (Wrikisli) : 5/5/2013 4:36:03 PM (GMT-6)

Posted 5/6/2013 12:16 AM (GMT 0)
My first real meal after my 5 hour resection was breakfast: consisting of one scrambled egg, heaped into a small circle, one slice of toast, cup of coffee and small orange juice. I looked at that meal as if it wouldn't feed a bird. However I was quite full from that very small meal (something I should have paid close attention to when I came home, small portions are truly best when you're reintroducing solids to a touchy gut).

A few nights prior to this first real meal (before that I had frozen fruit ice bars and cream of celery soup, which I declared was just green water) I had dry heaves and severe nausea. I wanted a saltine in the WORST WAY. And told the nurses they were just so mean not to give me one. I said - I should have just packed a few and you'd never know if I ate one or not. They smiled and chuckled a bit saying - oh we'd know it, you'd be wearing that saltine a few minutes later.

You cannot sneak anything past those nurses.

Happy Healing!
Posted 5/6/2013 1:09 AM (GMT 0)
Great to see your continued improvement!! Great job staying positive :) Hope you continue to improve!
Posted 5/6/2013 3:07 AM (GMT 0)
Lol at Marsky and the nurses. Love that response from them!

I'm glad things are moving along Pluot!
Posted 5/6/2013 12:03 PM (GMT 0)
Yes those nurses do seem to have eyes in the back of their heads - they turn into teachers when you're recovering from surgery!

Another funny story I have is they wouldn't allow me to shower or wash my hair, for 5 days. My pillow smelled awful. On day five I walked into my bathroom and proceeded to mimic bending over the wall sink to wash my hair. It had a high curved faucet. Then I stood up to see if I got dizzy. And I didn't so I assembled all that I needed from my suitcase to finally wash my hair. I can't recall if I blow dried it or not, I was doing this task on the sly, so probably not. An hour later, hair completely dry my nurse came in to check vitals, etc. and stopped DEAD in her tracks:

You washed your hair! And we told you not to!

I just smirked and explained that I didn't willy nilly just do it, I made sure I wouldn't get dizzy.

Oh did that hair ever feel wonderfully clean.

But that's another example - those nurses see all baby. Oh they sure do. lol
Posted 5/6/2013 4:23 PM (GMT 0)
You should have said, no I didn't wash it, and shake your head saying no.
Posted 5/6/2013 4:29 PM (GMT 0)
I was at CVS this week and saw a "no water no soap" hair washing kit. It's basically these gloves that have some sort of special chemical. I wasn't allowed to shower last time and I know I won't be allowed to shower next time. I'm going in prepared!
Posted 5/7/2013 1:33 PM (GMT 0)
Hoping to break out today. Apparently my daily output is still hovering slightly above 1000 cc so they are giving me three Imodium per day to start. If output decreases this morning/afternoon I'll get out of here :-D

On my phone so not going to ramble too much but I will say that the tube is out of my butt now and although i still have drainage I've been pretty much able to hold it. It is a very strange and new sensation!!! I wonder of holding it after takedown will feel like this.
Posted 5/7/2013 5:12 PM (GMT 0)
Thank you for this thread. I'm facing the next step myself, sometime in June, and I confess I'm feeling a bit nervous about it. I feel like I'm just getting used to this part (had my colon out in November) and now everything is going to change again. I keep reading so many negative experiences, I'm very happy to read that it is going well for you. Please keep the updates coming!

kc
Posted 5/7/2013 5:16 PM (GMT 0)
So glad to hear you might get out today. I feel like getting hope made me feel so much closer to healed after the first step. Will be thinking of you.

Does holding it feel different than when you held in mucus in your rectal stump?
Posted 5/7/2013 8:55 PM (GMT 0)
Oh man, what a day! They are jerking me around like chicken!!

I still think I am probably going home today, but it will be late. First the chief resident told me I would go home today. Then another resident came back and said my output was still a little too high, they wanted me to take Imodium and see if it decreased. Then my nurse came in and said I already had so much output in the morning (she claimed 600cc -- I think someone screwed up somewhere along the way) that it looked like I wasn't going to be allowed to leave... Then I moped around and napped for a few hours (during which time I had almost zero output because I took two Imodium already, which I almost never ever take), and when the chief resident came back he said: DON'T take any more Imodium, stick around a little longer, we'll probably send you home. It has gotten to the point where the rest of the team doesn't even come in to my room during rounds because there is nothing to see!

I am a total worry wart but I really do not think that I will dehydrate left to my own devices at home. I've been off of IV hydration for 24+ hours, most of them without Imodium, and am peeing copiously nicely colored urine. I have been in danger of dehydration from high output before, I got myself to my doctor's office for IV, and I was fine. So... I'm really not scared.

Holding it in feels nothing like the old rectal stump. It is very very hard to explain. Quite honestly (TMI alert) I was lying in bed and I knew I had a pad under me so I actually tried to relax and see if anything would come out, and nothing did. It only comes out when I sit on the toilet. I must be REALLY well potty trained! Maybe something about relaxing to urinate activates the same muscles. No idea. When I'm walking around/standing up it feels like I'm maybe a little more "in danger" of leaking, gravity I suppose, but it hasn't actually happened. Knock wood.

kc70, glad this is helpful... I laughed when I read your post and thought, I definitely haven't described this experience honestly if this made you LESS nervous! Kidding... This surgery was. so. hard. The first few days were probably the most sustained pain I've ever experienced. I know UC pain was worse, like scream out loud, but it was the kind of thing that came and went, whereas this was constant. It was also just plain uncomfortable. I was pretty much ready to murder everyone by the time I had had a tube up my butt for five days straight. Of course now it's pretty hazy so I'm like, eh, whatever, it's over!
Posted 5/8/2013 8:22 PM (GMT 0)
How are you doing? Did you make it home? I hope all continues to go well for you, thanks for all the updates!!
Posted 5/8/2013 9:00 PM (GMT 0)

Pluot said...

kc70, glad this is helpful... I laughed when I read your post and thought, I definitely haven't described this experience honestly if this made you LESS nervous! Kidding... This surgery was. so. hard. The first few days were probably the most sustained pain I've ever experienced. I know UC pain was worse, like scream out loud, but it was the kind of thing that came and went, whereas this was constant. It was also just plain uncomfortable. I was pretty much ready to murder everyone by the time I had had a tube up my butt for five days straight. Of course now it's pretty hazy so I'm like, eh, whatever, it's over!

Actually, I can "visualize" the kind of pain you mean. I remember after I had my first surgery, the incisions (though they were laparoscopic and therefore tiny) just killed, and every little movement was agony. I was literally aching to lie in any other position than on my back with my legs straight out in front. When the physio came on the day after the surgery and told me it was time to get out of bed I looked at her and said No Way. But, it passed. I believe my pain tolerance has gone through the roof since I got sick, and knowing it's temporary is half the battle. So, you described it fine, and I'm still reassured by your experience!
Posted 5/8/2013 9:08 PM (GMT 0)
Hi Liz, glad you're doing well. :)  The hospital is never a fun place.

When my husband had his step 1 (he did the 2 step process), he always had high output from his stoma.  They were all freaked out about it at the hospital but it was just how it was.  His doctor said he had to put his stoma high up in his small intestine, so there really wasn't much distance between his stomach and his stoma.  He easily was outputting 1200-1800 CC's a day.  Immodium didn't do anything for him at all.  Lomotil didn't do anything.  Also, throughout the entire eight months he had the stoma, his output was pretty much always liquid.  It would get a little thick if he ate apples or chips but it would go right back to water just as fast.  He also could not tolerate sugar, so once we figured that out he improved as well.  Sugar just made stuff go through him even faster than it already was.

If you do have a high output stoma, then you'll just need to make sure you don't get dehydrated.  He only got dehydrated once but that's cause he wouldn't listen to me and was downing all kinds of soda, ice cream, slurpees etc... so, after he got out of the ER he straightened up and we got him some electrolyte pills... those were a life saver.

I actually don't think doing it in 2 steps is a bad thing... I know there is a big debate over which is better ... but I (we) actually think its better to get it all done in 1 step and then wait it out for the take down.  Just seems like going through 2 major surgeries would be way harder to recouperate from then to just recouperate from 1.  But as long as everything works out in the end. :)  He is super happy with the results and is almost totally back to normal just 6 days after his takedown.

Hope you do well with the rest of your journey! ;D

Posted 5/8/2013 9:17 PM (GMT 0)
Hey y'all (and hey what!). It's a law of nature that the first night home from the hospital always sucks majorly, right? Last time my dad got KIDNEY STONES the night I came home, and last night, I think I had my first real blockage experience.

So as I mentioned earlier the surgeons said I had to get my output down in order to go home and they wanted me to take three Imodium. I almost never take Imodium, and when I do I usually take 1/2 tablet or at most 1. I figured they knew best and this is a new kind of ostomy so I bindly accepted the first two tablets. I knew after two that it was TOO much so I refused the third pill and went home. I was still having some output, though not much, so I figured it was fine.

When I got home I had half a small turkey sandwich (wasn't really hungry but trying to heal up!!)... should have known then that something was really wrong because I had zero output while I was eating. Tried to go to sleep but woke up pretty quickly in agonizing pain. Over the course of the night my pain escalated, probably tying the worst night in the hospital. Couldn't sleep at all, and it was all I could do to try to curl in the fetal position, rub my belly, and hobble in circles around the house. about every hour I would hear or feel one tiiiiiny bowel sound. It was torture!

Anyway I guess most of you here have experienced a blockage before so I won't keep describing the experience in agonizing detail, but I have a new respect for everyone else... mine was NOT a total blockage, I did not get nauseated, and around 9 AM I started to have a little bit of liquid output and my bowel seemed to 'wake up'. I spoke with the surgeon who agreed as long as I was having some output I dont need to be readmitted, but he said to go back to liquids until I feel back to normal. I've had a decent amount of output so far today but it has all been liquid and every so often I feel a lot of pressure in my stoma like it is struggling to push something out. Is it possible to have a food bolus stuck in there for so long while still having a fair amount of liquid output (about 400 cc)? Of course I am STARVING as I've only had three or four meals since pre-op but I am really scared to try solids again until I see something actually... pop out.
Posted 5/9/2013 2:37 AM (GMT 0)
Ugh, sorry about this setback. I have never had a blockage of any kind (knock on wood) so I don't have any advice. Just some well wishes!
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