Anxiety

Hi McLovin and I’m sorry to hear that you’re having such a rough time of it. If you click on my name then you’ll see that I had a couple of issues post op and you do start to get very disheartened so I’ll share my mantra of ‘This too shall pass’. It is still quite early days and the various medications will be playing havoc with your bowels which are probably still in diva mode from the op. The usual go to is loperamide but I think you would need to run this past your medical team so it doesn’t clash with anything else you might be on?

bowelcancerorguk.s3.amazonaws.com/.../RegainingBowelControl_BowelCancerUK.pdf

I’ve attached a link to a booklet from the bowel cancer uk board - the muscle training exercises are worth a look at - I was told it is better to try and resist the immediate urge to go as you might not make it and practice holding it in until you’re nearer a toilet. From a practical point of view do you have a Macmillan ‘Cant wait’ card and also a disabled toilet key?

https://www.macmillan.org.uk/cancer-information-and-support/bladder-cancer/using-public-toilets

It’s also a good idea to have a little emergency bag with you with wipes, underwear, pads, poo bags. You could buy some incontinence pads/ pants to tide you over the next couple of weeks until things have settled down. 

I know it’s embarrassing but at the same time you cannot stay in bed all day - your legs will start to lose strength, you will be at risk of blood clots and it won’t be good for your mental health either. Do you have a garden that you can walk round every hour or so or even just to the end of the road and back? 

Please keep talking to your team? I’m disappointed that they seem to think that brown bread is the answer but loperamide could definitely help and if you need any low residue diet ideas then just let me know?

Hope things start to improve for you soon

Take care

Karen x

Oh my lord, you have been through the wars...  My mum had this a few years back post -surgery- fine  on coming home and then NOT fine, although no infections were ever diagnosed. She had some weird nurse/GP advice too (eat lentils for protein?? what?? Like Karen, I'm surprised at the brown bread advice- that would destroy me even in "normal" times!). My mum's surgeon was just of the opinion that sometimes she'd need Movicol and other times loperamide and just to get used to that. She is 87 and also has  a bit of a narrow colon and diverticulitis, so probably harder to deal with  post-surgery effects.

However, she DID get some relief with probiotics- she went to her local pharmacy, with whom she has a great relationship due to being 87 and on all kinds of things!- and they advised some. Things really improved- she still gets some bad days but way way better than it was.  There have definitely been some studies which say that probiotics do help the disturbance from surgery and the disease.  The probiotics might be helpful as you've had a bit of a bashing from antibiotics too.  Again, run that past the team, but don't be put off if they just dismiss it, the only thing to check is if it would interfere with anything.  Food diary is also an obvious task, but could help! 

But as Karen says, early days and you've had a few complications to give your bowels even more reason to throw the diva strops.  

 Lucy1382 Can you remember the name of the probiotics by any chance? Trying to stop all the gurgling etc. without having to give up my beloved cups of tea which might be the next resort  x

Oh yes, the gurgling!!! I have had  that all my life anyway!  currently listening to the symphonic variations..  I can't, but I'll ask her. You can't give up tea!!! NOOOOO. 

Karen, the probiotics are Optibac- she started at one a day on the lowest strength (20 billion) and the pharmacist advised staying on for a month to settle and then go up if necessary- I think 75 billion was the highest.  Here's the link to the article about it too  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5198246/ 

That’s fab Thankyou Lucy1382 x

Hi McLovin

Your story sounds exactly like mine. Came through operation absolutely fine, discharged after 4 days. Was given antibiotics for wound few days later. End up with terrible diarrhea which a doctor told me was because of the surgery I had, even though I was on toilet around 20 times a day. Was given Loperamide. Didn't help. I was getting worse and couldn't even sip water. Had blood and mucus and terrible painful pressure in my bum. My doctor suspected cdif so took sample and it was. Said antibiotics caused it. I was given vancomicin for cdif then I developed haematoma in belly from injections which was infected so more antibiotics. Cdif cleared up and I was fine for couple weeks then I felt the symptoms coming back so was then given Fidaxomicin. Finish those tonight. They also tested this sample for ecoli, salmonella and something else but was clear so hopefully after this course I can start to recover better. I'm now 8 weeks post op. Hope you feel better soon. I was also stuck in bed as I was so drained.

Binzy

I feel your pain on all the above, being bed ridden is the worst. I hope things clear up for you and you can start to live “normally” again.

Hi Mclovin,  I'm so sorry that you are experiencing this. I fully understand the Anxiety. I am over 12 months post op and still have moments of panic and accidents at the most inappropriate times. (One in the middle of a meeting at work) I was mortified.  However these instances have made me a stronger person. I am just grateful to have survived my cancer journey. 

I have a permanent Stoma, which helps with some element of control.  Is this something that your consultant would consider die to your extreme symptoms?

Good luck and remember to keep talking 

ECG