So sorry MeLisa that you are struggling so much! Since your take down was in October, I do not think it should be this bad! 6 months not unusual to still have struggles, but yours sounds bit worse than most! I was at 20 day for long time, but 30! Geez! first if all, can your DR. or his nurse help? I still take, and need, 8  Lomotil daily and gave up Immodium as its not as strong. Theres small amount narcotic in Lomotil that helps slow things. Your diet sounds good, bland and bulking, unless you've developed SIBO. SIBO would necessitate limited or avoiding all carbs. I'm not expert but gassiness is one sign of SIBO. Other question is do you feel you're emptying completely when you go? I would try squirt bottle with warm to hot water to see if when you're there you can empty more stool without pushing/ straining. I found the hot water to relax the muscles and I can evacuate more completely. A nice heated bidet would work really well, but I don't have one either! It often takes several refills of hot water and 15-20 minutes, but once I've emptied it feels so much better and  gives me time away from the throne. 

Wish I had other ideas, but hopefully someone else who's had more success than me will jump in. I'm over a year out, still have 10-12 daily due to Cuffitis. I'm okay with 10-12 but just wish for more predictability. Good luck! I hope it gets better soon! Laurie

Was never this bad for me. At 4 months post takedown, I was commuting 45 minutes to nursing school and doing well. I also never needed bowel thickeners or slowers. I actually prefer looser stool, but regardless of how thick, at this point I go 4-6x/day.


It may be one or a combo of things suggested above. Could be SIBO, and honestly, most of the foods you eat, I avoid. I followed and trialed the FODMAP diet a time ago, and definitely found some triggers for me for bloating and discomfort.  Carbs like bread, etc in excess are bothersome to me, as well as potatoes and bananas, but unlike you, they make stuff *too* thick these days.  But carbs also amp up my gas and discomfort. Just a thought.

Regardless, there IS a definite 6 months to 1 year settling period, but your experience at 6 months in sounds a bit amped. I would definitely ask about antibiotics for pouchitis and consider that and all of the other "possibilities" as true possibilities at this point.

I was where you were at six months.
At nine months I went back to work.
NINE MONTHS!
I was still very weak and tired especially after my shift.  I was so exhausted I could barely shower and get in bed so I could be rested and ready for the next day.  I went back to work on a Wed.  I knew I could not make a five day week.  And I barely made three.  I was so weak and going back and forth to the restroom.
But as time went by and I kept doing it I got stronger and better. 
I have been back to work for almost a year and it has only gotten better.
Some fly right through this surgery... Some struggle with all they have.  Give it more time.  When they say 18 months.... They mean it.
Richard.

30 times per day 6 months out from surgery is not normal.  Have you seen your surgeon or GI?

 

Sue

Yes I have seen 2 doctors and they agree it is not normal but the only other suggestion is another round of antiboitics and I am not sure if they even helped the last time....I so appreciate your responses and yes my gas is sooooo bad at night!!! I never thought of the carbs being so bad but it makes sense since prior I really never ate carbs I was a high protein, vegi and fruit chick with some carbs like lentals, barley, quinena (however you spell it lol) and maybe this change of diet is not good for my body...although I still maintain a gluten free diet so IDK.

And I really appreciate you taking the time to write to me...this group really helps and I am so happy I found it

Sounds like a pretty tough time you are going through! I need to be careful with cereals as many of these bother me as does eating too much bread. I am guessing it is probably the yeast so I try to limit how much bread I eat. Keep pushing fluids, also, it seems like my pouch is much more easily irritated whenever it is close to my period time.

Most women, with or without colons, find their periods affect their bowels... It's because of prostaglandins.  (Also sometimes progesterone changes.)

 

http://www.popsci.com/science/...hen-i-have-my-period

 

I am 3 yrs postop and am still having trouble with pain and frequency.  It has been a long hard road to travel. But doing it alone made it almost unbearable.  I have found that Vicoden helps " slow " things down a bit. And also helps with pain. I know it is not a permanent solution but it may help in the short term.  And a low dose usually does the trick. On of the side offects is constipation.

Thanks again for taking the time to comment...much appreciated. I do try only by to say that it been 6 months to give it time but some days I feel overwhemed by it all. MY period causes havoc on my bm but I always had that issue it is all of the other days that worry me. I just stay as positive as I can and take it one day at a time

 

I feel your pain, I'm in a similar situation, I'm also hoping/praying for a break.. I would suggest a change from immodium to codeine (addictive I know) however can work apparently as affective if not better than immodium.
Also drink at least a litre of water each day.. Just my two cents

Sometimes it takes longer time for your “new plumbing” to adjust. Be patient… I had my surgery 14 years ago and it took about 2 years before frequency subsided. At the time seemed worst than UC itself, but I did not have UC pain any more. I think for most people first 6 to 8 months nothing actually works. Flagile and Cipro did not do anything for me so I did not use much of anything in the beginning and I had to go 20-30 times a day for a long time. One thing I did I timed my food intake with the output and kept a journal of the “travel time”. Some food travel faster than the other.  I schedule my meals and I did not eat any snacks I only eat 3 meals a day. My last meal of the day was before 5 PM (that schedule helped with the night frequency). I eat everything in moderation and did not deprive myself of any food and nutrition’s. I did not eat much of the junk food and I know sweets and chocolates are not “friends” with the J-pouch. I love chocolate and sweats and I know when I eat them I will have more movements but I am prepared and don’t do eat sweets in the evenings even now.

J-pouch can never replace the colon. We always will have more movements throughout the day, but with time things do get much better. Eat all the binding foods as you already do but also add cooked veggies and fruits as well meat and soups it is good for you (unless you have medical dietary restrictions). Small intestines will take in the nourishment's that you need. Remember to drink lots of water it is very important. Hope this will help you, I wish you well and speedy recovery.

It took me a long time to heal. For at least 6 months, I lived on white flour sourdough bread, white meat chicken and peanut butter. Anything with fiber made me miserable. I finally was able to add Naked brand juices in small amounts, which is good because I felt like my body was falling apart because of the unbalanced diet. Slowly I added more variety. Now I can eat anything, but tend to avoid hot - as in spicy - foods. The only thing that worked for frequency was tincture of opium. Ten years out, I still take it every 4 to 6 hours. 

 

We all heal differently and some of us take more time. That said, keep communicating with  your docs just in case. 

I know we all have problems after this surgery but I think being a woman and going through this would be harder. I am not a woman by the way.   One because of where our parts are located.  I think or have thought of it many times after having a bad day and the mess it creates.  I think  am thankful that I don't have that problem... And we know what I am talking about without getting graphic... I can clean up fairly easy as compared to a woman.  It just would make it that much more problematic.  I feel for the women that have a pouch that won't cooperate. Women have to be that much stronger dealing with this.
Richard