Brad, none of this is normal, though some of us do have to stay on antibiotics. Have you been tested for C. diff or other intestinal infections? Do you have a good gastroenterologist, or are you still seeing your surgeon? Finally, I think you’ve described how bad it gets, but it would also be helpful to know how your best days go.

Following your post Brad.

My 18 year old daughter has been house bound for over a year (long story... but her rectal cuff had left over inflammation everyone forgot about until they attached the j pouch. She is on infliximab and it seems to be helping/allowing the cuff to heal) BUT.... we struggle with toileting. We have had some incredibly great days (7 bowel movements during day and 1 at night), and A LOT of incredibly awful days (used to be 30 bowel movements during day, 12 at night - although settled down to 15 day and 10 night since cuff healing). As a mother, I am trying to find the best "meals" and "foods" to make for my daughter. Right now I'm trying to create an easy menu.  We have been taking Visbiome (here in Canada), but only one packet a day, in yogurt with one opened capsule of saccharomyces boulardii. I know sugary foods are the enemy... but her tastes buds have changed from really enjoying healthy food, to those with a lot of hidden sugars (another long story). She uses about 8-10 sublingual imodium and 6 Lomotil a day (with permission from all her doctors). There have been days where bowel movements were few, without any medication help - and I wish we could have many more of these days.  She too has been tested for c. difficile and it's negative (had it twice but the infectious diseases doctors eradicated it by weaning her off vancomycin for 6 additional weeks).  At this point, she has missed out on a lot of life and rightfully wants her ileostomy back. She, like you Brad, has had a lot of very similar symptoms - toileting frequency, consistency issues, really loud abdominal gurgling with pain (which 7 different pain/antispasmodic drugs never came close to decreasing it). 

Scott,

I have not been tested for anything. I am still seeing just my surgeon, but I have had an app to see my gastro doc for a few months and that app is finally a couple weeks away. Is there certain things I should maybe talk to my gastro doc about?

So it is common and okay to be on antibiotics pretty constantly? I wasn't sure what the negative effects were of staying on them long term. 

My best days really are just me not going to the bathroom as constantly and not having as much or as painful cramping. They are me not having to focus so much on my "problems." I do have a lot of gas pain as well, but have been really dieting to combat that. Some nights I sleep better than others, but like last night for example, even while I am on antibiotics and ate a healthy meal early last night, I woke up almost every hour and barely was able to go.

I struggled for a long, long time with UC, and just am to a point now where I am hoping I will ever get to "be normal." Will I ever start sleeping better, or be able to really go wherever and whenever I want?

Thanks a bunch!

Brad

Jpouchmom,

I am sorry your poor daughter is struggling through things as well. It is very hard to stay positive and convince yourself that things will get better. I know for me, I haven't had the J pouch very long just yet. and I hated, hated having the ileostomy, but it makes you think a lot about which of the two is the lesser evil. Be how young I am, and especially how young your daughter is, wanting to get out and do things and be active becomes impossible at times. 

Thank you for your response and your advice on dieting, and I hope your daughter finds success...

Brad

Brad, the first step is to figure out what’s causing the trouble. Only then can a treatment be selected that might reasonably get it under control, and only then can a thoughtful set of expectations be set. Most J-pouchers don’t have to stay on antibiotics, and most who do get a better result than you have described. Good luck!

Hi Brad. It takes a while to get the hang of living with a j pouche. The first thing I learnt is that I basically can only sleep on my right side if I want a good nights sleep.   it would be fair enough to say that a packet of Gastro Stop (loperamide) a week or more would be acceptable until u settle down  Finish eating about 3 or 4 hrs before you go to bed  Also excessive milk products are a no no for me.  Even milk in tea or coffee is enough to set me off.  If you feel like u need to get rid of wind go to the toilet just in case you have a bowel motion.  And if u need to go out during the day (work etc) don’t eat until u can safely be near a toilet .and finally I know that if I eat a small amount of food I can guarantee that I’ll need to go to a toilet 10-15 minutes later. I had my surgery five years ago and I’ve just learnt to manage it. It’s a 100% on my life previous to my surgery. Good luck  You’ll be good.  Just stick close to a good gastroenterologist  one you can get on with and talk with   All the best  Francesca

Thank you Frencesca. I will do my best to stay positive and follow some of your advice. I am looking forward to my appointment with my gastro doc. 

Brad

Update: I met with my gastro doc, and had a flex sig scope done of my pouch. We found some ulcers within the pouch. Not sure what the cause is or what yet treatment needs to be. Should get biopsy results back soon and will go from there. 

The biopsies rarely show anything interesting. This is probably just pouchitis, and 10-14 days of Cipro or Flagyl is likely to fix you right up.