Feeling lost in adaption period

Hey Mike,

It's been 12 weeks since my takedown and my pouch function is similar to yours. Mornings are usually good and I can go 6-7 hours without having to go to the bathroom. But, post lunch I have to go more frequently and I wake up at least once at night. I don't know the reason but that's how it is for me as well. I don't have leakage though. Have ou tried kegels? That might help with the leakage and accidents during sleep.

I also have butt burn and itching and it seems the creams or ointments don't help too much. But, have you tried an anti-fungal cream? I had called my surgeon when things were really bad and he asked me to try an anti fungal cream used to treat athlete's foot. I can't seem to remember the name. That might help in case it is a fungal infection.

As your pouch expands things will get better. I am 3 months post TD.

My situation was very similar to yours. I am on Lomotil and Bentyl to control the diarrhea and gas. I take my meds just before going to bed.

I still have leakage and have to get up at night, but not as frequently as I used to. Depends on what I eat.

Keep a daily log of what you eat and you will soon find out what does not agree with you.

You could try taking immodium, but it did not work very well for me.

Try calmoseptine (heavy thick paste) for your rash. It worked great for me and things cleared up within 2 days.

Sleep on a big pad, like they use in nursing homes under patients because of incontinence. When you go to bed after using your calmoseptine or nothing sleep on top of on one of these pads, as they protect your linens and mattress. The air is one of the best things to help heal your bottom. Pretty hard to do at work.

I've seen washable ones for sale at Walgreens. You can also get disposable ones there too. I like the washable ones best but then you need to wash them.

Did you ever notice how babies just love to run around naked? That's my theory of why - to avoid the diaper!

I forgot to say I take immodium (1 in the morning 2 in the afternoon and before bed). Also metamucil morning and afternoon. Yes I have one of the big pads what a savior.

Just frustrated by the lack of sleep and when does this get better so I can comfortably get back to somewhat normal activities.

Try kegel exercises to strengthen your anus muscles.

If your job has you sitting all day, that can cause problems too. I set an alarm and get up for a short walk every 50 minutes.

Hope things get better for ya!

I think 7 weeks back to work is too soon. Is there anyway you can work half days? I'd think 3 months until you get to 4 month stretches at the least but that's my experience. I still get up a few times but it's more like sleep walking and I go right back to sleep. I'm 2.5 yrs post take down.
Good luck!

I too have had a similar experience - I am 6 weeks out. Feel like a normal human being in the morning, going hours without a BM. Then in the afternoon soon after lunch I go about once an hour and then feel horribly ill for 3-4 hours until the late evening when I start feeling normal again. During the ill period, I experience consecutive waves of cramping, bloating, urgency, gas, goose bumps and chills and a tad bit of nausea. My theory is that the misery is mainly gas induced. Gas is enemy #1!

This past Sunday and Monday were the WORST! I logged 20 trips to the bathroom per day and hours and hours of feeling green and sour. I had run out of VSL #3, so that was a suspected cause. On Tuesday I did two new things. I started back on VSL #3 and started taking 2 Pepto Bismol pills at every meal. Since then I've had 4 consecutive "good" days!!! My frequency is still as high as 14x/day, but as low as 8! But most importantly, I haven't felt completely wretched in the afternoons.

Lastly, I've given up for now on a varied diet, and have stuck to pasta, white rice, yogurt, bagels & cream cheese, apple sauce and chicken for now to get a better grasp on how I feel with these foods and be better able to detect what will happen when I introduce something new.

So VSL #3, Pepto and pasta -- these are currently making me feel better.

Sleep on a big pad, like they use in nursing homes under patients because of incontinence.
TEMarie:

I had my Mother steal my big blue pad during my last hospital stay. We pulled it out the dirty linen container, stuffed it in a grocery bag and she took it home to wash.

You are still very early in your recovery period. I too went back to work that soon and my mornings were good but afternoons not so much. Things do get better over time. I am 15mths post takedown and I have learned my j-pouch pretty good now. I usually eat a very light breakfast, very small lunch and have a good dinner. This way I am pretty good throughout the work day. Hang in there and take it one day at a time.

Regarding hospital quality bed pads.....I wrote down the name of the linen company my hospital used and called them to ask if they would sell me any of those bed pads. They did! I've had them for over ten years. They launder beautifully and I just automatically use them even if I don't need them. I'd rather be safe than sorry.

I did that too Lesandiego plus I have a better one I took from one of my dad's hospital stays. He didn't want it so I kept it. He prefers the disposable kind but he doesn't have our kind of problem either.

Good idea Ceeeeceeee! I saw them the other day at Walgreens as I still use them and wash them when I change my sheets. I don't need them but I bought a new adjustable bed and don't want to take a chance!

I had my surgeries a few years ago and the leaking didn't really subside until about 2 years post op. I'm 6 years out and I sleep through most nights, no leaks. I Just eat a bulking food (I have bananas before bed) and Imodium. Also a probiotic may help. I found that my body just needed to figure out what the heck was going on and it got there. Just took time. (I hated when people said that but time helps)