Is anyone else awake?

Hi BlueBlue, I was awake at 2am but only because I never sleep well! I had my ileostomy for a year and it was reversed a year ago. During the time I had it I would have to get up once a night to empty it, sometimes just because it had blown up as I found that the filters never worked and the advice from my lovely Stoma Nurse to press on the bag resulted in a nice leak.

So, if the stoma is behaving itself and the pouches are good, what is it that is not letting you relax? Is it the thought that you might have an accident if you don't keep an eye on it? If that is the case then I am sure that, with time, you will trust it though you may well be up once during the night anyway.

Do you relax with it during the day? Do you have confidence to get out and go places or do you worry about the stoma then also?

Is getting up for a couple of hours with tea the right answer? Is it that you just can't sleep? I would go back to bed and if I couldn't sleep I would listen to some music and more often than not I would fall asleep while listening. I still do that now as it takes my mind off whatever is running through it at the time.

Five months is quite a long time, I hope that you find some way to relax soon and get some sleep.

All the best, John

Hi John

Thanks for your reply.

I'm really not sure what the problem is.  I've never been a good sleeper as I have caring responsibilities for disabled siblings so always a lot going through my mind.  However, it's not anything to do with them that's keeping me awake at the minute. The stoma seems to be the last thing I think about before sleeping and the first thing that comes to mind when I waken up.  I suspect that it's due to all the issues I had with leaks earlier on (I've only had 1 face to face appointment with the stoma nurse and that took 4 months to materialise) but, fingers crossed, the earlier issues are resolved now and I'll get more relaxed with it.  I read a lot to distract myself though so that the night doesn't seem as long and, fortunately, I function reasonably well on reduced sleep. Also, before this diagnosis, I was never ill.  Saw the GP twice in 34 years (the last time 21 years ago) so it was a shock to find out that I wasn't invincible and needed to rely on others for a bit.

How did you get on with your reversal?  That is often at the back of my mind.  I don't know yet if it's possible as my appointment with the surgeon has been postponed due to covid (but he said after the LAR that it was a 50/50 chance). I'm sort of hoping that the decision will be made for me as I don't want to end up worse off - so I really need to learn to love this stoma.

Hi Blue Blue

i feel for you.. I’m only three months but I had terrible nights when I didn’t trust the bag leaking. I’ve had several accidents mainly my fault in causing pancaking and then overspill. Nightmare thinking about it before rest. 
My first issue.  Sort the bag so it’s the right one for you. Which you’ve done

Second. Calm myself. Lavender on the pillow. It’s old fashioned but works 

Thirdly. I never slept anyway not sure why I must have been a nightmare child so I take half a sleep aid Kirkland   But there’s lots of herbal types out there  

I’m not sure if I’ll get a reversal but I’ve come to terms with it because I hated that cancer in me  it’s out and the stoma has saved me  

I named her Whoopi   Sometimes WhoopsaDaisy  and sometimes whoopee cushion  it just helps me to appreciate where I am and what I’m dealing with 

I hope this makes you smile a little  

take care

treat yourself to something you like  

Hi BlueBlue

I should have had the reversal at six months but Covid got in the way, hence the year. I was pushing for it but when I got the chance I read all the bad reversal stories and almost didn't. Was I jumping from something I could manage to something worse?

I have been glad that I had it done. The operation was quite quick and I was only in for two nights. The first couple of weeks were interesting, wanting to go every hour and producing little bits. After a fortnight I was going out again and gradually I built up the bulk. I did the excercises for maximum control and would try to hold on when the urge came and it would often go away. I took probiotics to replace all the bacteria that had gone, and still take it today.

For some months now I have a 'new normal' and go twice a day, sometimes more if I have eaten too much rich food, though it is hard to find out what triggers off any adverse reaction.

It doesn't work out the same for everybody but it has for me. I had a LAR, like yourself,  so only have a little rectum left but enough. My surgeon didn't even consider not doing the reversal, he was confident I would be all right, so perhaps you might find yourself guided by yours.

Hope this helps, please ask if there is anything specific comes to mind.

All the best, sleep well,  John

Hi Ann

I've read several of your posts and I so love your attitude.

The lavender sounds like a nice idea. We tend to overlook the old-fashioned remedies these days but it would definitely be worth a try.  I've used herbal stuff in the past but I'm allergic to some of them so tend to spend the night scratching rather than sleeping.  I've also got a strong anti-histamine that causes drowsiness and a double dose can be used occasionally to help sleep. I'm saving that as a last resort as it fairly knocks you out. (My Mum always swore by a wee brandy or 3 but I'd far rather have a glass of wine)

I saw from one of your other posts that you weren't sure if you would get a reversal.  I really hope that can get resolved for you.  It's good to have a Plan B though - just in case.  That's why I'm so determined to get to the stage where I can forget that I've got a stoma.  It's definitely easier during the day - just the wee small hours causing a problem.  Lots of folks cope with far, far worse though as I can see from this forum. I'm in absolute awe of all of them.

Thank you, take care and fingers crossed that you get some good news from the surgeon.  x

Hi John

That sounds so positive and a really great outcome!  You must be so glad that you made the right decision.

My surgeon is very matter of fact and says it as it is.  No waffle (ex-army and a bit scary but very committed to his patients), so I'm sure that he'll be very forthright with his opinion which is exactly what I need.  I've no idea when my re-scheduled appointment will happen but I'm in no hurry.  I'm using the time to try and really get to grips with this stoma just in case, whether by necessity or by choice, we're going to be together for a very long time.

Thanks for taking the time to answer. I really appreciate it.

Best wishes

Hi BlueBlue  

kirkland sleepaids good.
I used to have terrible breathing allergies most of year and I took phenergan but boy oh boy they cured my allergies but would take out an elephant. So definitely would not recommend that.
 I found half a tablet of Kirkland  on good day gives me a good four hours til empty Whoopi then I can usually get another three. On a bad day I’ll take a whole tablet   Still need to take care of Whoops but do it half asleep!

The lavender is lovely on the pillow and Whoops gets it in her pouch with her baby oil, it really helps a quick evacuation of her output. She can be a sticky customer at night. 
Have you named yours? 
I’ll design you a sticker like mine if you want. Some people have thought of brilliant names. We started a post and the names really made me chuckle. 
you take care 

Hi Blue Blue  I had a reversal done after only 4months .I was proud of my Twins Boris and Nicola.but they were so like their name .All ways arguing with each other and I had my tumour cut  out consultant  made the decision so that was it.

Yes I had a few problems with the reversal but these things happen.and it's a year since I was diagnosed and looking great and put on some weight ..

Sleep is as normal as ever 4hours on. up for a drink then back to bed with the kindle book on listing to my book  On saying that the other night I slept for 10hours .  Good luck with everything and t us know how you get on.Have a look at Artsie,a page and you will see The Twins Boris and Nicola .so proud that they were made for me    Alaine

Hi Ann

Phenergan was what I had in mind too - so maybe best not.  You can only use it occasionally for sleep anyhow.

The baby oil sounds like a really good tip though so I'll try that too along with the lavender.  This stoma is going to end up more pampered than I am!  It doesn't have a name at the minute.  In the early days it was Vesuvius but it's calmed down a bit since then.  I will need to have a think.

Thanks for all your advice - brilliant. x

Hi Alaine

Boris and Nicola sound as though they were a right handful - and very true to form.

It sounds as though they were glad to have had the reversal done in the end, despite a few problems.  Maybe easier than coping with Boris and Nicola though eh?

Its good to know that you're keeping so well.  I'd be lost without my kindle.  It's always to hand.

Take care and thanks for the encouragement. x