Hi everyone,
I had an ileostomy reversal in May this year and the one thing I could have used at the time was a list of tips and tricks to get everything back working again as quickly as possible. I really didn't want to suffer for 6 months and wanted to get to the 'new normal' fast.
My op was a resection to remove cancer leaving just 4-5 cm of rectum left so i was expecting the worse. if this sounds like you then read on - this might be useful to you.
I'm now six weeks out and have to say that everything is just tickety boo! (and has been for the last 2 weeks) pretty fast eh? it's getting better every week now. I'm also cancer free.
So here's my round up of what I found worked for me and more importantly why it worked for me (i think)
1) Following the op they wanted me to pass a fart before they would let me home - if you bowel passes some wind then it means it's doing something and will start working. I would not have wanted to leave hospital without that fart happening because you could have been straight back in pretty quickly should your bowel be blocked. As Prince Harry and the american bint said their vows my first fart appeared. it was tiny and hardly registered on the richter scale, but it was the start of something great.
2) When you get home, take it easy - you may be going to the loo straight away or you may be like me and take a couple of days - don't rush it and don't worry because when it starts you will treasure those times when it didn't.
3) When it starts and you are going several times an hour, count the number of times - your stoma nurse will ask you. also note the consistency of the output for any questions they may have. Buy baby wipes (lots of, 60p a pack at sainsburys) and use them every time last off. Finally before you go back to your living room, stick a wedgie there because the chances are there will be several times you won't make it to the loo. It's a bit like the first time you got really drunk, but in reverse.
4) To begin with all we want to happen is for the bowel to get working again. it's been like a hibernating grizzly bear - when you start to wake it up it most certainly will complain and lash out at you. when you go you will get muscle cramps in your tummy - just let it happen - these can be pretty severe and will make you tired. but don't worry - all we want to happen is for the bowel to wake up and get used to actually being awake. An important step I found here was to not 'push' as we were used to in the past - don't squeeze your tummy muscles - just let your body push it out on it's own. sit there for at least 15 minutes and let it fall.
5) DO NOT stop eating food - it's very tempting to say "i'll never eat again" but doing this will prolong your suffering. your bowel has to learn who is the master - if you stop eating you allow it to go back to sleep - a bit like using the snooze button on your alarm clock.
6) For the first 7 -10 days, eat easily passable foods only - stuff that just slides through the gut. mashed potato, yoghurt, white rice pudding, potato waffles and cheese, marshmallows, porridge, ready brek etc. - remember all we want is for the bowel to start working and get used to being awake.
Emotionally this will be a hard time for you - you may wish you could have the bag back, you will regret the decision to reverse - DON'T - because life is sweeter as a dyson club member (bagless) Keep your spirits up and take no visitors. all they do is talk about your cancer anyway and you want to avoid people there if it's the time for your bowel attack saying "yeah, but are you REALLY ok?"
7) For the first 2-3 weeks you will have days where you do nothing but go to the loo. you will get breaks for a few hours in between so get some sleep then. you WILL be up in the middle of the night. what I did was to go downstairs and wait until I had not passed for half an hour and then would go back to bed. damn thing always wanted to start at 4am for me! you will also get plenty of days where nothing happens - enjoy them in the garden but never be more than 20 yards from a loo.
8) When you go to the loo and before you finish and wipe - just stand up, sit down, lean forward and touch the floor then stand up again, swing your torso from side to side - what we are trying to do here is get the body to shove out some more before we go and collapse in front of the TV for a bit. In this stage my theory is that the bowel wants to completely empty. When it's completely empty the grumpy bear can hit the snooze button and nap again and that's when you get your clear days.
9) After 7-10 days of this (it does actually go faster than it sounds) start introducing fibre - a brown roll, some museli or weetabix maybe - this is the time to get the bowel to firm up and it needs 2 things to do it - first some fibre and then to slow itself down. you might be scared at this point of blocking yourself but you wont. so for a few days introduce more and more fibre until your diet has lots of it. at this point you will still be going to the loo a lot but you'll notice it turns to a 'sludge' consistency and is harder to pass. Trips to the loo might be like 20 minutes at a time. You will be tempted to start pushing it out now - but don't, just sit there and let it push itself.
10) When it's 'sludge' (and if advised by your nurse) start taking loperamide - i used to wait until i'd been about five times and then just take one (with some food like a biscuit or 3) - if you go five more times take another. for now just do it like this - not every day. even now you will be having bad days and nothing days.
11) a point will come where you start passing something resembling proper stools. this is the point to start loperamide every day regardless of bowel movement (again confirm with stoma nurse) - just one a day with any other meds you have straight after eating breakfast. you will start to get more regular at this point. The reason for this is that your bowel is shorter - in my case 10 inches. it needs to be slower so that it can absorb the water in your poo and create proper stools. you will still have several trips to the loo - maybe 5 times but then it stops until tomorrow. It's like you have what 'normal' people have for a poo - but in five bits. this is because you have a smaller rectum and your body can't hold as much before it warns you.
this is the 'new normal' for you and to me it almost feels like my old routine just with a few extra loo visits. Normally for me when i start going I know that i'll be going four or five times in the next two hours and then i'll be free for the day.
12) i've put this low on the list but really it should have been much higher. do pelvic floor exercises from at least a month before your reversal op. do them several times a day until you feel like you could use your anus as a bottle opener. instead of counting sheep when going to bed, count clenches. this will pay you dividends down the line because after the op you just won't feel like doing them.
13) avoid alcohol completely until you are at the final stage - then just have a beer, miss a day and then another beer - slowly you will get back to being able to have a tipple again. I'd avoid wine at this point though and def no spirits. Alcohol speeds up the bowel again so just don't do it till this point. I'm guessing that a heavy session will result in a bad day the next but i've not been there yet.
And that's my tips and tricks to dealing with the grizzly bear. I hope they help you too. You should always consult with your stoma nurse or a professional with regards to taking the loperamide but my guess is that they will give you the same advice.
Again, I really hope this helps you - you're welcome!.
Hi Natasha, all will be well over time - you do have to work at it a bit and you will discover what triggers any 'episodes' that you have.
My life is pretty normal now, I don't think about it much. I still get the odd day where i'll go several times in a few hours but that's often my fault because im coeliac and i do eat the wrong stuff. (and i like beer which is a no-no for coeliacs) Twice a week i go playing snooker which is a lot of bending and stretching - I have six hour sessions at it and if that doesn't cause problems then nothing will. I'm also an avid soul dancer - again something that 'moves' stuff around. all is good with no adverse issues.
The good thing is that the 'poo' is now always normal - just more frequency of it. where i used to go probably twice a day like clockwork i might go say 10 times in 3 days. There's no acidic burn, no loose stuff - just good old fashioned sausages 
when i do get these episodes it's almost like my bowel just wants to get rid of it all in a few hours and then i'll get a day or two with nothing. But it's totally acceptable to not have that bag swinging around and the threat of leaks etc.
I have full confidence in going out and mostly i sleep through the night now. it really is a 'new normal' as they say - but it's not so different than before and you never have to worry where the nearest toilet is - I can hold it for more than an hour if I need to.
Life is good.... yours will be too - you made the right decision and i'm sending a hug to you from across the pond.
ps, you posted o the 27th Aug - which was my 35th wedding anniversary
