Nights are miserable

Stephanie,

I am sorry you are struggling.  I had my J pouch surgery 26 years ago so it's been awhile but remember the first year was the biggest adjustment.  Hopefully you'll find support on these boards and learns tips.  For me Calmoseptine ointment is a must!!  That has helped my skin.  I do still wake up a couple times a night to go to the bathroom but I have control and no incontinence.  I don't take any meds to slow down my output though...have experimented with taking Immodium and haven't seen it to make a big difference for me.

Best of Luck and hang in there...it gets better!!!

Shellie

I've had my jpouch for 7 years. Unfortunately  my pouch has failed  me since the first day i got it. I go 10 times during the day and three times at night. In the beginning  i use to take 8 Imodiums a day but it stopped  working,so now i take lomotil  4times a day, 4 tylenol threes, 6 bentyls and alternate between  cipro  and flagyl. Im also on entyvio. Nothing slows down my output. I am thinking about having pouch advancement surgery.i have chronic  cuffitis.i use calmoseptine  for butt burn.i tried fiber but it made things worse. It tried suppositories,foams,steroids. and enemas but it was too painful. I hope your pouch doesn't  fail you like mine. Everyone is different. It took me a whole year to recover but i was really sick. I still work and go to school just have to take more bathroom  breaks. I hope you feel better  soon.

DDS

Thanks for your reply, Shellie. You are a special person to respond on these boards even though your surgery was so long ago and it seems you are doing as good as it gets with the jpouch. I hope this time will be a blur in 26 years!

I also love the calmoseptine lotion and it is much more effective than the other cream I got from the hospital. Do you still use it from time to time? I hear the skin toughens over time. 

Best wishes!

Hi DDS! 

Thanks for writing. Gosh, you have been through a LOT and I'm sorry it seems you haven't found relief. It's scary to think about because your story reminds me of all that I've done the last seven years having UC. i was even on Entyvio. Anyway, thank you for sharing- it's good to be aware of the range of experiences. I wish you the best! 

I found that the six week mark brought a few positive changes, so hold on! I t does get better. I found that potatoes, good proteins, and bananas are good foods to slow things down for me. I really like Metamucil but I use the powder instead of the wafer and it has really helped. Nights can be so frustrating and I hope you see some improvement soon. 

Thanks @averyo99- that's helpful to know improvements could be a few weeks a way. I'm hanging on! Do you take powder just in the mornings? Do you also take imodium?  It's funny, I was so exhausted last night and I forgot my bedtime Imodium, but ironically I had a better night. Might have just been a one time thing, but another thing to experiment with!

I use Metamucil powder with breakfast and dinner. I only use a bowel slower (I prefer Lomotil over Imodium) at bedtime, when slowing things down is most important to me.

I do not take Imodium although I know many people have had great success. We are all individual so not taking the Imodium could definitely be something to experiment with. For example, I know VSL#3 is a great probiotic but I have stopped taking it and have had fewer stools and felt better. Weird. I'm taking a different probiotic with better success.

  When things are very active I take Metamucil twice a day, once in the morning and once at night. 

Thanks Scott and Avery! The more I learn, it seems each of us responds differently and I guess it's going to be a lot of trial and error. It's helpful to consider what works for others to get ideas for myself so thank you!