The first thing I’d try is stopping the daytime Imodium. It may take a few days for your gut to adjust, but that is when you want to use the toilet. There are other things you can do (e.g. a small fatty meal at bedtime, like a spoonful of peanut butter), but I’d wait until things have settled into a new pattern using the Imodium to guide the timing instead of trying to suppress bowel activity altogether.

Hi Scott

many thanks for your reply and I will take your suggestions onboard

Kevin

A few more thoughts:

1. I’ve found that Lomotil works better for me than Imodium. The difference isn’t huge, and Lomotil requires a prescription, so I’d put that experiment off, too, until it’s convenient (and only if you still need some fine-tuning).
2. It’s much harder to delay trips to the toilet at night than during the day, because the risk of an accident is simply higher when we’re asleep, and accidents in bed are quite upsetting. Sometimes when I wake up at night I decide to use the toilet, and sometimes I skip it, but I always have to think hard about it. I do usually sleep through the night now.
3. Hopefully you’ve been advised to “stretch the pouch.” Once you’re actually letting the pouch fill up during the day you’ll get to gradually, gently increase the time between toilet trips. I think this may be as much about learning which sensations are normal partially-filled-pouch sensations that don’t require a trip to the toilet as it is about any actual changes to the pouch.
4. You’re still in the early part of this. You will get better at it, and your body will continue to adjust.

Yes, I am conscious of my early stages but I do look forward to it getting better over time…they did tell me it would be ‘challenging’ at first, and they were right 😀

many thanks for your insights

I had everything you described except I was going all day, I would have to wear diapers at night. It takes at least a full year to get use to everything. I know its hard right now but you will get there.

Are you using butt cream??? Its important to take care of that so you do not have further issues.

Hi Lauren,

Thanks for the message and I appreciate your encouragement.
I am using a butt cream called Cavilon but I definitely could do with something better. I also use Cavilon wipes.

I find some days/nights my butt is on fire and other days not too bad.
still trying to figure it all out, so any guidance re butt burn is very welcome.

Thanks

Kevin

I know exactly what you are talking about. Yeah Cavilon did not do anything for me at all. I would definitely recommend Calmoseptine. You should be able to get it at Walgreens or CVS over the counter. I would get it ASAP! That is the only thing that has worked for me so far and I have tried a few different creams.

Calmoseptine will not be int he baby diaper rash isle, it will be in the Adult incontinence isle.

That’s great, many thanks

Kevin

@Kjccas posted:

That’s great, many thanks

Kevin

Your welcome! Do you think you want to try it?

Yes I definitely will

@Kjccas posted:

Yes I definitely will

Oh good! Please let me know how you like it!!! I am curious! Do you think you will get it this week?

I hope so  and will let you  know

@Kjccas posted:

I hope so  and will let you  know

Thank-you much! I would get it at CVS because if you sign up for their extracare thing, you get percentages off purchases after a while. I think Walmart has it too in some locations.

And okay, I look forward to hearing your review!

Kjccas hey just checking in- how is your butt burn??? Did you get the Calmoseptine???

Hi Lauren,

thanks for asking, I have been using Cavilon spray the last few days and it is working well. I will stay with this for now but know that I have the Calmoseptine if things change.

Is Cavilon spray something that you can put right on your butthole? 

I have heard of Cavilon cream being used for the butthole but I have never heard of the spray being used for that, but I am assuming its okay since people use it for their stoma.

I am glad you have the Calmoseptine if things change! I am glad you are prepared. Where did you get yours at???

I am using it sparingly in the butthole and it provides a layer of protection

wherever you get cavilon wipes you should be able to get the spray.

Yeah that would make sense. Is it very soothing for you and does it take care of itching???

Yes, all good at present

@Kjccas posted:

Yes, all good at present

Excellent, I am not sure if its cheaper than Calmoseptine but use what works for you!