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Ulcerative Colitis
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Posted 12/14/2013 12:58 AM (GMT 0)
After going to a different doctor and hospital, I have earned my surgery. But instead of two steps, it will be three. My colon needs to come out to soon to plan the j-pouch. So Tuesday I get my colon out and get an ileostomy bag. Then in four months they will do the j-pouch. Then four more months the ileostomy take down and reconnect.

I'm just happy to get the bag, so I can live again. Sleep all night and go on walks, I can't wait.

Halo
Posted 12/14/2013 1:01 AM (GMT 0)
good luck - hope all goes well :-)
Posted 12/14/2013 1:04 AM (GMT 0)
Best of luck and hoping you have a smooth recovery. This procedure gave me my life back. It's tough but worth it.
Posted 12/14/2013 1:06 AM (GMT 0)
Good luck. Don't leave us.
Posted 12/14/2013 1:40 AM (GMT 0)
Best of luck to you. It will be liberating to be free of UC. Please keep in mind, many with bags and j-pouches get up in the night to go indefinitely. :(
Posted 12/14/2013 2:35 AM (GMT 0)

notsosicklygirl said...
Best of luck to you. It will be liberating to be free of UC. Please keep in mind, many with bags and j-pouches get up in the night to go indefinitely. :(

Is this true? Once you have surgery you never get a good night sleep again??
Posted 12/14/2013 2:36 AM (GMT 0)
i had 2nd surg nov having 3 rd in feb march it is nice to live again i was so bad before couldn't function at all 40-50 bm a day i still get up at night once usually to empty bag but much better than before good luck oh had 1st surg in april
Posted 12/14/2013 3:05 AM (GMT 0)

UCHater said...

notsosicklygirl said...
Best of luck to you. It will be liberating to be free of UC. Please keep in mind, many with bags and j-pouches get up in the night to go indefinitely. :(

Is this true? Once you have surgery you never get a good night sleep again??

This is true to a degree. Some nights I get up once to go but many nights I sleep through. It depends a lot on what I ate that particular day. Still, it's better than the UC get up in the middle of the night bathroom visit. No pain, urgency or diarrhea. People need to understand that. I usually have to get up to pee anyway...darn getting old!
Posted 12/14/2013 3:14 AM (GMT 0)
What makes you get up to empty your bag? I get up multiple times a night now but what usually wakes me up is pain, pressure or the feeling of urgency. I'm trying to understand how that would like with a bag, I would think you wouldn't feel anything and it may just break if you don't empty it? How about a j-pouch...you get the "i have to go" feeling, but it's not like the "jump out of bed and run to the bathroom as quickly as possible" feeling when you wake up in the middle of the night?

Just trying to understand...I'm trying to come to accept that surgery is in my future (starting remicade next week - we'll see how that goes). So I want to be prepared...
Posted 12/14/2013 3:28 AM (GMT 0)
i wish u the best, halo!! i will be thinking about u on tuesday and praying that you have a successful surgery.
Posted 12/14/2013 3:47 AM (GMT 0)
Good luck and keep us posted. We are all thinking about you !
Posted 12/14/2013 4:00 AM (GMT 0)

UCHater said...
What makes you get up to empty your bag? I get up multiple times a night now but what usually wakes me up is pain, pressure or the feeling of urgency. I'm trying to understand how that would like with a bag, I would think you wouldn't feel anything and it may just break if you don't empty it? How about a j-pouch...you get the "i have to go" feeling, but it's not like the "jump out of bed and run to the bathroom as quickly as possible" feeling when you wake up in the middle of the night?

Just trying to understand...I'm trying to come to accept that surgery is in my future (starting remicade next week - we'll see how that goes). So I want to be prepared...

I never had a bag burst on me in the middle of the night. I think probably if I was half awake I would instinctively check the bag and then if it felt full that would wake me up. You also have to remember the bag is literally hanging off of your abdomen, over time you become very sensitive to the feeling of the weight of the bag and you can almost tell just from gravity pulling on the bag pulling on you if the bag is full or not (I imagine this is also why people seem to be more likely to have accidents at night from too much gas filling up the bag). I've never been a deep sleeper and long before UC I would typically wake up a few times in the night (and roll over and go back to sleep). Most people are this way, especially adults. I probably slept through the whole night with my ileostomy about 50% of the time, the rest of the time I'd get up once, and very occasionally more than that. I probably emptied a bit more conservatively/more often than I needed to because I had my boyfriend in bed with me most nights and didn't want to risk a burst bag.

As for the j-pouch feeling now, it's like waking up with a full bladder. The feeling of needing to have a bowel movement wakes me up, and it's uncomfortable enough that I know I can't (or shouldn't) try to go back to sleep without having a bowel movement. The only times I wake up and feel like I have to rush are if I was in a really deep sleep, e.g. from being drunk.

Good luck Halo. I had three steps too and I felt awesome after the first step. Not so much step 2 but no need to worry about that yet! The hardest thing about step 1 is getting used to the ileostomy and that's old hat for you.
Posted 12/14/2013 4:11 AM (GMT 0)
I get up often in the night anyway to pee but some nights i get a good night sleep and i don't get up at all. I think waking to use the bathroom with a pouch would be much easier than getting up with UC. getting up with UC could mean being stuck in the bathroom for a very long time or getting up many times with pain and D... Pouch is easy, you just go and go back to sleep. It's a huge improvement but I don't know how likely it is you will get 8 hours without rising. Emptying a bag in the middle of the night sounds like a very involved chore but i bet it's not when you're used to it.
Posted 12/14/2013 4:16 AM (GMT 0)
It's about as tough as peeing... we're talking about emptying the bag, not changing the appliance. You can do it with your eyes closed!
Posted 12/14/2013 4:37 AM (GMT 0)
I have had my end ileostomy for 9 months now and I do get up once every night to empty my bag...usually 3-5 hours after laying down. I was nervous at first about how I would know to wake up, but I quickly developed a sort of "sixth sense" and just seem to know when I need to wake up. A lot of times I wake up because the bag is full of gas and blown up like a balloon! Not always a whole lot of output, but I still empty it to at least get rid of the gas. Some people say that not eating 6 or so hours before bed helps reduce the need to get up at night, but I like my night time snacks WAY too much to try that approach. When I had UC I was up countless times at night and really never slept at all. Now I might be up for 5 minutes, not even waking fully most of the time...just stumble to the bathroom, empty, stumble back to bed and back to sleep. No big deal at all!
Posted 12/14/2013 5:07 AM (GMT 0)
Pluot, I don't think I understand emptying the bag. I think of it all as changing.
Posted 12/14/2013 5:11 AM (GMT 0)
The bag is resealable at the bottom, like a heavy duty Ziploc bag (oversimplification but basically how it is). When it's time to empty, a few times per day, you open the bottom of the bag and let it drain into the toilet, wipe away any excess around the opening, then close it again. Most modern bags have a velcro type closure at the bottom to make sure it stays securely closed except when you open it. You only need to change the appliance (remove the adhesive around the stoma, clean the skin, etc) every few days.
Posted 12/14/2013 5:25 AM (GMT 0)
Oh, that sounds crazy. Ia m sure it all sounds crazy until you've tried it. I can't imagine that a seal like that would hold but I guess it's been perfected over time. Thanks for explaining. :)
Posted 12/14/2013 10:29 AM (GMT 0)

notsosicklygirl said...
Oh, that sounds crazy. Ia m sure it all sounds crazy until you've tried it. I can't imagine that a seal like that would hold but I guess it's been perfected over time. Thanks for explaining. :)

It folds over 3 or 4 times and then there is a velcro plastic seal that gets closed over the opening, I doubt it will ever leak unless there is human error and we don't seal it tight.
Posted 12/14/2013 10:39 AM (GMT 0)

UCHater said...

notsosicklygirl said...
Best of luck to you. It will be liberating to be free of UC. Please keep in mind, many with bags and j-pouches get up in the night to go indefinitely. :(

Is this true? Once you have surgery you never get a good night sleep again??

I've only had an ilostomy for 6 weeks and typically I only empty my bag twice a day, once in the morning while I am getting ready for work and once before I go to bed. There have been some nights that my bag has filled up and I needed to empty it an extra time but that definitely hasn't been the norm.

You can feel the bag against your body, I can usually tell by the how heavy my bag feels hanging from my body by when I need to empty it.

If the bag fills up with gas you do NOT have to empty it, you can open the bag from the top and let the gas out....they refer to it as "burping" the bag.

Living with an ostomy is a lot easier than living with UC, but I am really looking forward to living with a j-pouch in a few months.
Posted 12/14/2013 10:54 AM (GMT 0)

halo52208 said...

I'm just happy to get the bag, so I can live again. Sleep all night and go on walks, I can't wait.

Halo,

I had surgery 6 weeks ago and I felt so much better day-1, getting that diseased colon out of me was a great decision.

Living with an ostomy is so much easier than living with UC but it's still more difficult than before I had UC.

My energy is back (I didn't realize how much energy was drained from me from the UC and all the meds). I feel like I could go for a run today if it wasn't so freaking cold outside. The only thing my surgeon doesn't want me doing is lifting weights above my head. He said that I can eat whatever I want, you do have to make sure that you chew your food really well or you could get a temporary blockage (which usually clears on its own).

I'm going for a 3-step J-pouch too, they tried to do the first step laproscopically but I was so sick that they had to cut me open to get my colon out....no big deal.

This is the first week in 8+ years that I will be medicine free, if I kept my colon then I'd be taking medicine the rest of my life or until I had my colon removed (or if there was a cure).
Posted 12/14/2013 4:07 PM (GMT 0)

notsosicklygirl said...
Oh, that sounds crazy. Ia m sure it all sounds crazy until you've tried it. I can't imagine that a seal like that would hold but I guess it's been perfected over time. Thanks for explaining. :)

It's a secure seal even though it sounds so simple. And once you start doing and get used to it....you can practically empty it with your eyes closed. Changing the whole kitten kaboodle is another story. I didn't have my ileo long enough to master doing that quickly. I always felt like I was all thumbs. Just when I was used to doing it all, it was time for my reversal which was just fine with me! :-)
Posted 12/14/2013 6:25 PM (GMT 0)
halo....that's pretty fast, and it's encouraging that you're anticipating the next step (well, one of 3) in your total recovery.

You'll have lots of support here and at the ostomies forum.

I hope you touch base with us asap after the surgery.

good thoughts sent your way,
q
Posted 12/17/2013 6:33 PM (GMT 0)

ByeByeUC said...

UCHater said...

notsosicklygirl said...
Best of luck to you. It will be liberating to be free of UC. Please keep in mind, many with bags and j-pouches get up in the night to go indefinitely. :(

Is this true? Once you have surgery you never get a good night sleep again??

This is true to a degree. Some nights I get up once to go but many nights I sleep through. It depends a lot on what I ate that particular day. Still, it's better than the UC get up in the middle of the night bathroom visit. No pain, urgency or diarrhea. People need to understand that. I usually have to get up to pee anyway...darn getting old!

I'm not sure if I'm a rare case but I can't remember the last time I got up to go in the middle of the night. And I'm counting 12hr sleep-in weekend days as well.
Posted 12/17/2013 6:50 PM (GMT 0)
Hey Todd,
I don't think you're a rare case. I'm sure many j pouchers sleep thru the night. Many nights I do but not all. That's great you get a good nights sleep every night. If it's not my j pouch waking me up it's my bladder, hubby or my dog....I can't win! :)
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