Adjusting Period - 2 Months On

Hello, Jordysimo.

You are very early days. Eight weeks only. Everyone has different timelines, but for me it was around the fourth month after my takedown that my frequency and urgency finally started to settle into a manageable routine. In the beginning I was 12 + times in a 24 hour period. There was a brief period when nighttime was very bad: every 30 seconds! No sooner than I'd wash my hands and leave the bathroom then have to turn around and go back. Very disheartening, exhausting, made me physically weak, and sometimes bring me to tears. I didn't know what was happening, and was this was my new life. Sometimes I couldn't leave the house, and when I did venture out I had leakage, which set things Burning.

One day it just started to get better. And from there things settled into a new normal. No urgency. From the start I kept a steady diet, tried to eat simple food, consumed a lot of homemade broth, just under a litre a day (water is something I have to make myself drink), avoided sugary fruit juices, and chewed everything very well so food wouldn't irritate my pouch. An irritated pouch is like a rumbling volcano, always ready to spew something. Your pouch is still very young. Be gentle to it. Be patient. It is learning how to be something it never expected to be: a kind of colon. I am eight months out and now seven or eight times in a 24 hour period. I expect it to be even fewer as time goes on. No urgency, no frequency unless there is some pouchitis brewing and I take Cipro right away and by the third dose I am 95% better. I hope things will get better for you as your pouch matures day by day. Happy new year.

I was crapping the bed a lot after the surgeries.  Just watery crap, ya know in my sleep, messing up my underwear and bedsheets.  I would sleep real good and then wake and boom there it was.

Then I just started waking up whenever I felt like pooping.  And stopped having accidents on the bed, but my sleep was worse because I kept waking up to go poops.

So either I sleep like a baby but I crap like one too.  Or I have nice clean underwear and bedsheets but I barely sleep.

¿Aye, que vida?

Thanks for the information, Winterberry! That's relieving to know as you get some people who have no urgency at all after takedown surgery and it just makes you overthink.... but I suppose everyone's different. I know exactly what you mean about trips to the bathroom. I'll be just getting back into bed and getting comfy, then I'd need the toilet again. I have only had one bit of incontinence, and that was the night after my operation... I have never had a leakage since being at home in my own bed. I just wake up when I need the toilet it seems. It's just getting annoying having to clench when you feel a bit of urgency that's all... So you're saying suddenly one day it just felt different and felt better?

And if the urgency hasn't surpassed after another couple months... is it still possible it will eventually in the future?

Happy new year to you too!

Hi, Jordysimo.

Yes, it seemed like I had a different problem every week, the broken skin, frequency with fissures, then things started to get better for me around the fourth month after takedown. The frequency and unpredictability eased. One thing I never practiced is holding it in for long periods of time. I read that pouchers are told to try and hold for awhile so that their new pouch can expand, but I never did that. I just feel that if the new pouch is grumbling and telling you it needs to be emptied, you do it. Listen to your body. Holding it in seems to me that is keeping waste, bacteria, gas, acids, grease and residue in your pouch, which is really your small intestine and was never meant to hold those things. The urgency is telling you to find a bathroom and empty. For me, I tried to help out my confused new pouch by keeping it as free of waste as much as possible so it is not irritated or itchy, or inflamed, making things worse. Try not to clench or hold unless you are far from a bathroom, or stuck in traffic! Eat regular meals, and small snacks in between. Simple, whole foods. Today, even after a good breakfast, lunch and dinner, I was only five times.

My doctor said if you experience a fleeting success, then it stopped, there is no reason to think you won't be successful again later. Your body is trying to find an acceptable routine to replace the function of your old colon when it was healthy. It takes time and patience, trial and error. If you can't do it this week, see how it goes in two weeks. Don't give up. Your body has just come through a major surgery and lost an organ that was five feet long. Whatever you can do to help your small intestine / new pouch, try to do it. In a few weeks, see if your urgency has eased up and you are at an acceptable frequency. Let me know. Take care.