I understand that mostly people who are doing well aren't sticking around support forums but those with issue and seeking advise do. Still, maybe someone can calm me down and give advise. I'm thankful that forums like this one exists and thank you for all the advice you have been giving me so far. It has been accurate and helpful.

A week from today I'll be in surgery for my take down. I'm happy to be done with the bag but I'm also scared. I know it will take time to adjust to my new j-pouch and all that but I'm mostly scared to be incontinent at night. I had ulcerative colitis and before I went into the first surgery, I had to wear diapers at night (and during the day too) and I had to clean myself and change them 4-5 times at night. I never slept through. Now with the bag I can sleep through when I change my bag the evening before and the filter is still clean. It doesn't balloon. When it does balloon I need to get up and either burp (risky lol) or empty. Sometimes I don't fall asleep anymore. The other night I tossed and turned for two hours.

I'm scared that I will never be able to get a good night's sleep. I can handle the bag now but will I be able to handle the j-pouch? Will I be able to get my 8 hours sometime down the line? How can I ensure that I will fall asleep quickly after a bathroom break?

Original Post

So I am almost 3 years out and I would say that for the most part I have not had leakage for several months.  I was the same as you, accidents all the time, wearing diapers before my surgeries.  So like I said, no leakage for a very long time, until last night.  We are on vacation, eating late, drinking too much red wine, etc.   So, one incident of bad leakage last night.  Should have used the bathroom one more time before I went to sleep.  Oh well, live and learn.  Sorry for the cleaning people who had to change the sheets.  I should add that I had taken a Benadryl due to pollen so I was sound asleep!

I wouldn't worry; only time I had to wear diapers was  in hospital just after the surgery which created my J pouch.

Takedown was easy; within two days of surgery I was ready for home.

Once discharged (at around 10am) I was able to make 3½ hour train journey home without the need to use the toilet; no leakage or ugerncy either.

Its been 4 years since my takedown and I've never had any accidents or leakage, whether sleeping or otherwise and I certainly don't need to wear diapers or pads during my sleep.

I also sleep through.

 I never give my j pouch a second thought; that is, unless I'm responding to post on this forum.

I don’t think i had any leakage at all once I was gone. I think i wore diapers for the first week bc it helped me feel comfortable at night but I didn’t need them. I also ordered the pads they have at the hospital that u can put under your but when you sleep. Basically like but towels. So if u do have an accident? U just change the towel and don’t have to change the entire bed. You can get them in amazon. I kept them and use them for under my daughters crib mattress now. Lots of good uses and in the end it made me feel more comfortable thanks actually me needing it. 

I think I was getting up 3-4x a night at first but it got way better. I watched what I ate before bed and that helped. The Less I ate, the less I got up to go. Hope this helps! Good luck!

Don't be scared! That could bring on anxiety and be a self-fulfilling prophecy. If you're a fan of Dune, I suggest the litany against fear.

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear..." - Frank Herbert, Dune

If you can handle the bag, the j-pouch will be no problem.  There will be a getting used to it period. . .for both you and your body. You'll definitely be able to get 8 hours of sleep. Perhaps not at first, but you'll get there.

Good luck!

I haven't gotten replies and I need to ask more questions. The surgeon put powder down my wound and he tried to get it out next day but there is still powder on the bottom of the wound and obviously I don't want to poke around. Will it eventually wash out when I shower? 

Sometimes I wake up anxious too!  Your pouch is really new, so its hard to know what will happen with it today.  The unknown is the scariest place to be!

One thing I do to help anxiety to ease up is to count my blessings.  What are all the good things that are happening.  Examples for today:  I got out of bed.  I slept through the night.  I was able to help my high school home schooler with his Chemistry. I got some laundry done. 

Sometimes I get down when I think too much about the negative and forget that there are some good things in a day.  Yes, I get it; sometimes you really have to search for the positive.  I'm not a "Polly Anna".  There a days when all I want to do is sit an cry too. But looking for the positives and being thankful for them does a lot to lift my spirits.

Hope this helps a bit!

Everyone is different and so their reactions and experiences. In my case I have been very unhappy and feeling miserable ever since I was diagnosed with ulcerative colitis in 2008.  I was healthy and never had any issues or problems with my digestive system until I went to a weightloss clinic in Mexico. In a matter of 4 months taking the so called natural pills I started having abdominal pain followed by urgency and diarrhea. Then my pain was getting worse and  the diarrhea turned into blood. I got hospitalized In December 12 2008 and on Dec. 28 2008 I underwent  total colectomy. Followed by the 3 phase procedure of the j pouch. After final takedown in October 2009. During the times I had the temporary ileostomy bag it was a nightmare because the bags never stuck to my skin. I had to be changing the bags 3 times daily.  This was a very traumatic experience. When I had my takedown I developed a rectovaginal fistula. The colorectal surgeon said that to fix the fistula he had to do again the 3 phase surgery. I panicked I was so mortified having to deal with the bag again that I decided to wait. Until another doctor told me he could fix my fistula without having to use the bags. This doctor messed me up. He didn't repair my fistula but left me to deal with incontinence. I still have to go restroom every 3 or 4 hours day and night. So I never had a good night sleep since then. Now same issues continue, the abdomen pain, the urgency and diarrhea, getting nauseous and not eating good. ☹😢

 

No regrets on my jpouch. I usually sleep thru the night and its been almost 2 years since i got it. Careful not to touch tomatos or spicy food and usually no major burning bum. Just not having the stress and anxiety of worrying about your bag makes it worth while! Good luck

Thank you so much everyone. That's why I love this community. 

I'm feeling much better now. Today was the first morning I woke up without anxiety. I'm eating. I can hold it. I even passed gas already. The wound is closing fast. I only get up 1-2 times at night which is totally acceptable. 😊

Unhappy posted:

Everyone is different and so their reactions and experiences. In my case I have been very unhappy and feeling miserable ever since I was diagnosed with ulcerative colitis in 2008.  I was healthy and never had any issues or problems with my digestive system until I went to a weightloss clinic in Mexico. In a matter of 4 months taking the so called natural pills I started having abdominal pain followed by urgency and diarrhea. Then my pain was getting worse and  the diarrhea turned into blood. I got hospitalized In December 12 2008 and on Dec. 28 2008 I underwent  total colectomy. Followed by the 3 phase procedure of the j pouch. After final takedown in October 2009. During the times I had the temporary ileostomy bag it was a nightmare because the bags never stuck to my skin. I had to be changing the bags 3 times daily.  This was a very traumatic experience. When I had my takedown I developed a rectovaginal fistula. The colorectal surgeon said that to fix the fistula he had to do again the 3 phase surgery. I panicked I was so mortified having to deal with the bag again that I decided to wait. Until another doctor told me he could fix my fistula without having to use the bags. This doctor messed me up. He didn't repair my fistula but left me to deal with incontinence. I still have to go restroom every 3 or 4 hours day and night. So I never had a good night sleep since then. Now same issues continue, the abdomen pain, the urgency and diarrhea, getting nauseous and not eating good. ☹😢

 

I'm so sorry you went through all this. Maybe it's worth rethinking about the 3 step surgery again. Because they way you are right now is no condition to stay in. I had problems with my bag too until my ostomy nurse told me there is solutions for everything and she helped me to find a system that worked for me. I haven't had problems with it since then. I made a thread here asking if you would go back to the ileostomy if you had to. I definitely would if my J-pouch failed. 

I hope you find solutions and I wish you the best. 

I am so glad you are doing better.

I am 15 years out, and the first several years were a very difficult transition.  Just remember, each day where you are at healing wise is just a train stop along the way, but not your final destination.  The stop might feel gross, be difficult and stinky and not what you expected.  But it's not permanent. 

I always tell myself to not buy real estate in those spots, because we are heading somewhere else at the end of this journey.  And where I am going is better than the stinky train station.

Anxiety often means that your body is stressed out and is trying to tell you that.  Be very gentle with yourself and your body.  The body never lies, just our mind does! Our mind will tell us not to feel things we feel, or think things we think. Allow yourself to relax in order to let your fight or flight system to change back to normal so you can heal. Cortisol levels make it so that the healing slows. 

For me the controlling of stress was a game changer.  Nurturing and Gentle.

 

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×