Reversal how long should I wait?

Hi Ann

Oh, I'm so vexed for you it sounds awful.

After my ileostomy I needed a potassium transfusion so it must be a "thing". Maybe some banana might help - with the added benefit if thickening things up?  My GP also told me to reduce carbs and increase dairy, particularly yogurt. The ones with added probiotic were recommended.

I'm disappointed at the lack of aftercare you've had, but not hugely surprised. When I was in discussion about a reversal I was told that I'd likely be discharged very quickly and, when I tried to get them to outline what I might expect and what sort of support would be available afterwards, particularly if I was struggling, they were very vague and not  willing to commit to anything.  They did also say that the first two weeks would be the worst though.  Being pushed aside like that is unacceptable.

I really do hope that things start to improve soon and that you can get a bit of relief.

Wishing you all the best and sending a huge virtual hug x

Thanks BlueBlue 

Yes all mouth and no action. I have had the cold shoulder from my colorectal nurse. It’s almost. Cancer gone tick. Monitoring tick Reversal tick. 
I am not having a colonoscopy that they will not tick. I am not taking any bowel prep if I settle this down it’s staying 

In a way education was the same we had so much pressure and tick boxes to fill we missed playing with the children.

That’s one of the reasons   I left.
I didn’t want to follow children around writing labels and taking photos. I wanted to encourage them to experiment in their play. 

Too much paperwork and not enough interaction and Covid has made this worse.

Im in my soap box again. At least I’m not thinking about poo  

Hi Ann

I wholeheartedly agree that it's a tick box exercise and I actually said that to my colorectal nurse (lovely woman, sadly recently retired now). At my appointment with the surgeon to discuss reversal I tried to ask questions that I felt were important to me, the lifestyle I want, the sort of outcome that I wouldn't be prepared to tolerate, he just showed me a form that said someone higher up than him had ticked a box to say that I was suitable for reversal. I wasn't asked about how I was managing with the stoma, my lifestyle (2 disabled siblings with numerous health challenges so I need to be active and on my toes) and, in my mind, these things all have a bearing in making an informed choice. It was a case of someone had ticked a box to say that I could have a reversal and he would tick a box to say that he'd be happy to carry it out.  In the end, I chickened out, couldn't cope with the uncertainty.

Good for you though at getting up on that soap box despite everything!  You are still the strong person you've always been throughout this whole rotten cancer process. Whoopi will be cheering you on!

Take care x

Everything in that nine hours 7.15 -4.15 was telling me No!
Then I could not believe it my Consultants understudy who I thought was doing it walked in. I was mesmerised and bloody speechless 

She looked like Whoopi Goldberg from Jumpin Jack Flash. It was incredible I was star struck. She had a Caribbean accent  

She said that we’d met at my EUA I said not. She said that she’s had her hair cut She had same sparkly eyes and her hair was exactly the same  I thought it was a sign that  Whoopi would approve 

First thing I asked the anesthetiser

“Who did the op?” 
It wasn’t her. I was so disappointed my consultant is top in his field so I should have been delighted 

I’m sure Whoops is making me pay 

Ha ha 

Yes Angusbairn

I chose the name the first day as I wanted a strong kick ass females name  Jumpin Jack Flash and the car scene popped straight in there so hence Whoopi was named 

Shes making me pay now by opening a can of  whoop-ass

x

Artsie. Hi Ann. I used to take 2 before breakfast and 2 before tea - they should be taken 1/2 before eating. I’m not sure who gave me that dosage - you can take up to 8 a day. You could start with low dosage and see how you go? I still take them sometimes now. I’m possibly my own worse enemy cos I eat and drink what I like and I know things like a Chinese will set me off and once I’ve been, say, half a dozen times then I’ll take 1 loperamide and that will stop it. It is possible to have what’s called overflow diarrhoea whereby you’re constipated but with diarrhoea backed up behind which can seep through!

I was in 5 days with my reversal although I did get ileus again. I remember the consultant asking how my bowels were and I told him totally liquid. He said ‘a little bit formed?’ and I said ‘no totally liquid, not formed at all, it’s like I’m weeing out of my bottom!’ ‘Any small, fluffy stools?’ ‘No! It’s liquid’ -it’s felt like the monty Python dead parrot sketch. 

I think with loperamide it slows the transit of food down so that allows more liquid to be absorbed as it passes through the body - if we’ve all had several inches of bowel removed then the transit time is going to be quicker isn’t it? I think with rectal cancer as well there is less storage but that can improve over time as the rectal area can stretch and then hold more stools.

The link below is to an old post but might make you feel less alone

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/f/general/160097/ileostomy-reversal---my-tips-tricks-of-dealing-with-the-grizzly-bear?pifragment-13906=1#1386422

Take care

Karen x

Thanks Karen 

You made my staples hurt I laughed out loud at the dead parrot sketch. Also it reassuring to hear you describe weeing  from your bottom because that’s exactly what I’ve got. 
After last night’s performance I decided that I couldn’t do what the nurse said by going natural. Joe said that I looked really ill  yesterday so I took one loperamide before my toast this morning . 
No real BM thinks it’s waiting until I am asleep. There seems to be a pattern 

Thanks again. 
Did you start on the loperamide just after your op or did you wait? . That’s the only worry. I’m five days post op 

x

I’ve just read the post it’s brilliant and has a light hearted humour about it. I will try my best to follow his method 

Thanks xx

Artsie. I think I started on them in hospital because I remember they were the ‘melts’ which came in little foil packets and they were so sticky that the nurse couldn’t put them into the little paper cup so would open the foil then give it to me to take. My doctor then asked me to switch to the capsule ones as they are cheaper! I lost a lot of weight and it felt like everything was going straight through me - even now I weigh 10lbs less than before I was diagnosed but things improved gradually and the weight gradually went back on.

Are you managing to keep food down? I was retching and being sick a lot and a blood test showed an infection which I was readmitted with. I feel so cross that they’ve discharged you like this  

Take care

Karen x

Thanks Karen 

I feel such support here I felt quite anxious there. There’s no communication from the Bowel Team into the care that’s needed and they’re unable to give advice on food meds

Im not feeling sick I know that’s a red light  
My temp and blood pressure was okay in there because they did obs  through the night 

I’m glad I’m out they sent me out with laxatives. Imagine if I’d taken them in there. 

I was lucky because the stoma nurses gave me the loperamide two weeks after my op last year to control my over active stoma and high output. I didn’t use them. So I’ve got them here. they’re still in date. 
My team aren’t interested. Nurse said if I need advice phone her. I’d rather have help here and maybe my doctor. if I am desperate I will phone but not speak to her . 
I can’t get over the change in her attitude, she seemed so sweet when helping us through the consultation