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4 replies

4 Month Status Update

U 1970UCMember
Hi All,

Next week will be 4 months post take down. Things are slowly getting better. This process is painfully slow and I hope I haven't reached my ceiling yet and that I will continue to SLOWLY get better ;O)

I average about 6 times a day which includes 1 - 2 trips to the bathroom during the overnight. No butt burn issues. My golden period is from the time I wake up between 6am and 7am until mid afternoon. I don't go at all during that time. Then, come 3pm/4pm, I usually go every 2 hours or so until 10pmish. I will empty my pouch before bed and most nights I will wake up once to empty my pouch, though there are rare instances of going the whole night without emptying.

My overnight leaking has subsided to maybe leaking 4 nights during the week (used to be every night).

I just hope this isn't then end of improvement. If it was, I could live with it. But I am really hoping for 4 times a day with no leaks. Hopefully, this will be the case after 12 months post take down.

Still have issues with gas which will give me an urge to go for about 5 seconds and then I feel the gas move and then I will be fine for awhile. As my pouch gets fuller, the urges become stronger and more uncomfortable.

I never had issues with leaking during the day and luckily, I only had to deal with major butt itch the 1st couple of weeks after take down. But since then, the butt itch hasn't reared it's ugly head.

So all in all, I feel great. Good energy and I am slowly ramping up my excercise routine and work full time with no issues. I just get nervous sometimes that this will be the best it will ever be for me. It is such a slow process of adaptation, which is understandable being that the small intestines weren't made for this type of work. It's amazing that they even adapt at all! But it is hard to maintain patience sometimes. I continually pray for strength and patience.

I can live with the overnight bathroom trip. I just don't like the multiple trips in a short period of time in the late afternoons and early evenings. I really hope that improves over the next several months.

Anyway, I am happy with my results and look forward to further improvement. And this is certainly better than having an ileostomy!

I wish everybody a happy, healthy and safe holiday season!

love to all,
mark
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mgmt10mgmt10Member
I'm two and a half years post takedown and my day is still pretty much like yours. I don't use the bathroom at all from 7am to about 3 or 4pm and then it's pretty much every two hours until I go to bed. So if my math is correct I go about 4 to 6x in a 24 hour period but its all bunched up in the late afternoon into the evening. Some nights I get up to go in the middle of the night and some nights I'm fine and sleep thru.

I have gotten quite used to this routine. It beats the hell out of UC any day even though it can be annoying in the evening. It think it bothers me most when I go out to dinner or to a friends house in the evening and I have that nagging gotta go feeling. But again, it's all better than UC! At least I can hold it and go when it's convenient.

Sounds like you are doing really well for 4 months out. Continued good health to you! Smiler
R raven68redMember
10 years post take down. What I have found is that it has everything to do with what I eat, how much I eat, and what time of day it is. I also don't go for several hours after waking, but my stomach is empty. I'm not much of a breakfast person so I usually grab a slimfast shake on the way out the door. Then if I have lunch, I can expect to go to the bathroom within a few hours. Since I eat so little at the start of the day, I eat in the evening and therefore the increase of bathroom trips come in late evening and during the night. You will figure out what foods last longer in your stomach than others. For instance if I eat some high in water content it literally goes through within 30 min of eating it (such as a salad). I can't tolerate fibrous foods well at all so if I have a salad I have to use iceberg lettuce which is high in water, lower in fiber. Cheese and peanut butter are my life saver. Since I work 10 hrs days (actually night shift), I start my day with a slimfast just to get some protein and vitamins in my system. I bring hard cheese to work and keep a jar of peanut butter in my desk. That is what I nibble on while at work. I might have to use the restroom once before I leave the house, and once while at work. Once I get home, I eat whatever I want because I am close to my own bathroom. LOL Smiler
BD Blake D.Member
Hey 1970, I remember you because we had our takedowns about the same time, mine was August 21st. You pretty much described my day. I'm very happy so far. I have the same problems as you with leakage and that is probably my biggest annoyance, but considering where I was with UC, I'll gladly take it. My wife talked me into wearing pads to bed, which has really helped with the leakage problem and saves the underwear. I don't leak a lot, maybe a little spot here and there once out of every 3 or 4 nights. It has decreased with time. One thing I did was get a Coco bidet and that has been a good investment. I love that thing and would definately recommend it to anyone with a J pouch. I wish you continued progess and hope things improve for both of us although if it stayed this way for me, I would still consider it a success.

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