older j-pouches : do you still have bad days?

Hi fq,
I think everyone has bad days, J-pouch or not. I just had a doozy (note to self, do NOT drink Kool-Aid). Who drinks Kool-Aid anyway? I don't even give it to my kids!

Having that said, as for me, everything seemed to calm down, and be most consistent after 1 year. I know that sounds like an eternity, but that is how long it took MY body to adjust. Your car analogy is very true. As you know, there are so many factors and variables that come into play:

1. How ill you are before surgery.

2. In how many steps your procedure was done.

3. How many medications you were on, or how many you still need.

4. Your support group, family obligations, work status (aka, stress levels).

5. Surgical complications, etc.

Are you currently taking anything? I have been more recently taking immodium, and find it helps immensely (but I have to keep on top of it). If I miss a dose, forget it. Do you take fiber? What about pain meds? I was going twice as much after going off vicodin. Wish I could have continued, as it really slowed things down.

What have you been eating? I'm sure by this point you already know your red flags.

Hang in there. Good days and bad days will always exist, but they will be fewer and farther between as time goes by.

Best Wishes,

Colleen

quote:

do you still have bad days???

The answer quite simply is "yes." Out of every surgery I've ever had in my life, including one that was much more serious than J Pouch surgery, nothing has left me more frustrated than J Pouch Surgery. I've had so many bad days after all these years I don't know where to begin. Last night alone was a anything but pleasant sleep. 20 plus years of that can become very, very, annoying. Hopefully I've learned how to prevent dehydration now. None the less eating the right foods is still the equiavelent of walking through a minefield.

My plumbing is working fine but I did get a speeding ticket today. Bad day!!!!!!!!!!

Colleen - thanks. I remember you helped me a lot with all my fistula questions. you have the patience and heart of a saint. i had my j-pouch and takedown all in one go, so maybe that is why it is taking me so long? i am taking cipro right now, but not fiber as it made me very gassy and i thought it even increased my frequency? maybe i should try it again. my diet is still pretty limited. i tried stir fried veggies today and ended up straining and feeling like the veggies were stuck in the pipes! guess i'll go back to chicken and rice (yawn). hope veggies aren't an issue later on.

what happened when you drank kool aid? i haven't drank kool aid in a very long time

karen - thanks. that is good ur mind is now completely off ur pouch and u can worry about "normal" things instead!

I've had my pouch for 21 years. Yes, depending on what I have eaten I can still have problems but NOT uncontrolable like before surgery.

I am sure there will always be bad days here and there. I have had my j pouch 2 years and every now and then I eat something that sets me off. And it could be a food I have had before without issue so who knows what the cause is sometimes. Nothing like it was living with UC though.

People with colons have bad days too. My hubby is lactose intolerant. He had ice cream yesterday and forgot to take his Lactaid pill. Bad day!!

thanks, that helps! so long as it is controllable and only lasts a short while, i think some issues are manageable. i had to go to the bathroom 3 times in a row in the middle of the night just for small empties cuz stir fried veggies were stuck. fell asleep right after easily. with an ostomy though, i would have slept thru that, no problems! guess i'm still mourning my ostomy and need to accept and adjust to this 'new normal'

thanks

The middle of the night bathroom visits I find are the most frustrating. I have come to terms with it though now that it's just the way it is. I mean, I was up 10x a night when I had UC so once or twice a night now is certainly a good trade off! Luckily I always fall asleep again right away. It would be nice to sleep thru the night. I haven't slept thru the night since before my kids were born 11 years ago! First babies kept me up, then UC and now my j pouch. Lol I still wouldn't trade it for anything though!

Marianne - you still get up twice during the night? I thought that would get better with time. I get up twice during the night just about every night too and I'm 4 months out but hoping to get it down to just once by the time it's about a year....

Christine

Christine,
Yeah it stinks. It's usually only once but sometimes twice. And it's not to say it wont get better with time still. If this is the worst that can happen though, I will gladly take it!

quote:

I haven't slept thru the night since before my kids were born 11 years ago! First babies kept me up, then UC and now my j pouch. Lol Roll Eyes I still wouldn't trade it for anything though!

LOL, yeah i guess babies helped you prepare!

If my total frequency was 4-5x a day, and 2 of those were at night, i would be fine with that. but my frequency is like 9, with 3 in the middle of the night, so i'm exhausted!

I've had my pouch for about 15 years and yes... I still have bad days... But like someone else said, everyone has bad "stomach" days not just pouchers... I too, still get up in the middle of the night 1-2 times on a regular basis and if I eat lots of fatty, spicy, or veggie laden foods late, its more than that... I am lucky in that I fall back to sleep very quickly-unless my husband is snoring!!! I think the fact that I was only 16 when I got my pouch and survived college partying, dorm life, and rugby with my pouch made me very adaptable... Even if it does not get TOTALLY better, your body and mindset WILL adjust... I have quite a high frequency, but have just learned to roll with it...

LOL beth156!! I haven't had my pouch surgery done yet... in fact, my consult for the surgery is scheduled for Tuesday. I find it funny that you mention 'college partying'. It answers one of my questions I have for the surgeon on Tuesday. I want to know if I'll still be able to at least go out and have a few drinks on a Friday night without having bad effects. So I guess this means I can still drink socially without problems/worries. However, I plan to take it extremely easy for the first year after take-down so I can learn how my body is going to react just to 'normal' stuff.

quote:

Even if it does not get TOTALLY better, your body and mindset WILL adjust

True and not true. I can find small moments of peace after I'm done emptying myself, that doesn't last too long though. Given what I've been through alone, I highly advise finding other alternatives, since once you choose surgery, there's no turning back.

fq -- I can tell you that after 16 years, for me it continued to get better and better. It's not the same as it was when I had a healthy colon, yet FAR better than having ulcerative colitis. Again, it's a new normal. Be patient and kind to yourself and don't listen to the people on here who have had their pouches for over 20 years and still bitch and moan, but do NOTHING to change anything.

Even people with colons have bad days! (in fact, I know several people with colons who have far more issues with their plumbing on a regular basis than I would even on a bad day )

But to answer your question, yes. I would say that most veteran pouchers probably have bad days from time to time. For me, a bad day is usually due to butt burn/irritation or increased gas. And, as is the case with many female pouchers, I may have some issues for a day or two around the start of my period. Otherwise, the vast, vast majority of my days are good ones. Even on bad days my functioning isn't normally too adversely affected. If things are really bothersome I may take imodium and be extra careful what I'm eating. But I don't do anything drastic.

I'm 20 years out and my bathroom visits are still every 1.5 hrs on average. My UC-crohns made me more suceptible to lymphoma which I was diagnosed with 7 months ago. Sometimes I have to go every 15 minutes and in the morning I can go 2.5-3 hours, when pouch is empty. I wish I could just sleep thru half or third the night and wear depends or something but I feel it moving and can't get back to sleep. Unless I have alcohol and then I do sleep better and wake up to a bit of a mess but it's worth the sleep. Because of the cancer I'm nt suppose to drink much alcohol and can't use the melatonin I uesed to but cam drink a sleeptime tea but your body gets acclamated to it and it's efficacy wears off.