Any Advice Most Welcome

Does your wife have a colostomy or an iliostomy ?and did she have open surgery or laparostomy as that makes a difference to any answers to your queries

Hi Mr. Mac. If you click on my name then you’ll see I had a few set backs after my op too

I don’t think the physical pain was too bad from what I can remember. I had a cushion in the car that I put over my tummy under the seat belt and just did little walks each day trying to go a bit further each time

I was given codeine and paracetamol to take home but didn’t really need either if I’m honest

I was grumpy and fed up! I’d had the op and just wanted to feel better but I couldn’t eat and had a stoma so felt a bit sorry for myself really. I tried not to take it out on my hubby who was trying desperately to tempt me with various foods but I really just wanted to be left alone. 

I got very friendly with 2 ladies on the bowel cancer uk board (one who also has a permanent stoma) and we messaged continually because we all knew what each other was going through. Both boards helped me immensely because it helped talking to people who’d been through it. One of my neighbours used to pop in once a week for a chat which was a great pick me up and I also started going out for daily short walks or meeting people for coffee

I saw the stoma nurses every couple of weeks initially for about 8 weeks and then once the stoma had settled down I went onto pre-cut bags. They were very supportive if I ever rang up. I went onto chemo once I’d recovered so had appointments with the oncologist and regular bloods etc. After all that had finished I went on a day thing called Moving on from Cancer but that was it apart from scan appointments and CEA tests.

It sounds like your wife is struggling a bit at the minute and I know how hard it was for my husband seeing me unwell and unable to really do much to help. Would your wife consider joining us on here? Or maybe you could ask her GP to ring her for a chat? 

They say the general recovery time is about 5 weeks but the infection will have knocked her back a bit. Do you think that she might be feeling depressed and maybe need some medication to help with that?

Sending you a big virtual hug - the support of a loved one is so important but the focus always tends to be on the patient? I really hope she starts to improve soon but please look after yourself too and take time out for a walk/drive/game of golf? 

Take care

Karen x

I had a panproctocolectomy with barbie bum.I pretty well accepted it staight away as I had no choice and wanted to get on with my life.I used no pain relief after day 2 and soon got used to the stoma bag.after 6 weeks when the stoma has shrunk to its finished size you can get your bags ready cut which saves time.

I saw the surgeon once on clinic prior to starting chemo and again once afterwards when he transfered me tothe care of the nurse lead colorectal clinic.due to covid I have nevet seen them in person,having 3mthly then 6  mthly phone calls with cea bloods at a drive thro and a couple of ct scans.

Do ask anything

Also during chemo when food tasted like cardboard my husband did pop into good old m and s a lot for treats

As the others have said maybe your wife would gain feom some councelling to help her depression

Dont forget to look after yourself as well

Kath

Hi Katz. She had her colostomy done robotically for the cancer in her bowel and keyhole surgery for the liver

Thanks so much for your reply Karen, it's been really helpful. Unfortunately Denise isn't one for opening up to anyone about practically anything and keeps it all in which I know isn't healthy but it's the way she's always been. I read out all the messages of support you and all the other members have given me which helps and I will look at your experiences.  I would also love to take her a wee drive to the coast or for a nice walk but the weather here is dreadful at the minute but, if it picks up I will certainly try to coax her out. 

Take care

Thanks Kath. Unfortunately my wife's hasn't had a lot of luck when it comes to her health. She was in hospital for several years after being badly scalded as a child and has a fear of hospitals. She also can't understand or accept why she has now been hit with cancer and not knowing what the future will hold may hold. I think she is getting a bit better at dealing with the practicalities of her stoma bag and hopefully things will improve each day

Take care 

Hi Mr Mac

It's not really that long since your wife had her op but I hope that you're beginning to see some small signs of improvement.

Like Karen062 I wasn't in any real pain after the op (mine was an ileostomy).  I had paracetamol in hospital and didn't need to take it once I was home.  Food wise it was the white diet - white bead, chicken, fish, pasta etc which I found really boring but it's important to eat.  The GP recommended lots of dairy and protein and fewer carbs until my appetite improved.  Little and often was what I went for, introducing new things slowly.  A retired nurse told me to try an eggcup full of new things initially to judge the reaction and not to be frightened to do it.  Good advice as I felt much brighter once I knew I could still eat the things I'd previously enjoyed.

Yes, I was crabbit!  It was more frustration and annoyance with myself than anything else though.  I really felt that my body had let me down badly after years of trying to live reasonably healthily.  My Dad and Grandad both had bowel cancer so it was always lurking in the back of my mind when it came to lifestyle choices - e.g. I didn't smoke, drank very little, always ate my 5 a day (so boring basically!).  I also didn't see a stoma nurse face to face for 4 months (due to one retiring and a new one being appointed during covid) so that was difficult and I felt a bit abandoned and more than a bit stressed.

What absolutely helped me most was getting out for some fresh air every day.  Setting goals and walking a bit further each time I was out felt like an achievement, plus, as I live in quite a small village, there was always someone passing to have a wee blether with.  I was back up to my usual 4+ miles a day within a few weeks.  I also took short trips out, for coffee initially and then built up to going out for lunch etc. Little things at first to gain confidence.  It's all quite normal now.  I've holidayed abroad (5 hour flight), weekends away, theatre, cinema etc.

Has your wife been able to do any of the things she enjoyed previously?  Are there any close family members or friends who can suggest an hour out with her to get a coffee or have a chat?  Just little things for a change of scenery, a wee venture back to normality, and a chance to push some of these (very understandable) health worries aside for a wee while.

I really hope that your wife starts to feel a bit better. Look after yourself as well.  That's important too.  And keep posting and asking for advice.  This is a great forum with lots of really friendly and helpful folks.

Best wishes.

Hi BlueBlue and many thanks for your reply. I spoke to her surgeon today as he had called to see how my wife was and to make a date for a follow up appointment. I explained how my wife was feeling very down, still in pain, very lethargic and he pointed out that it was to be expected as she had had both her colostomy and liver surgeries done together. He said that the liver surgery can really take it out of the patient and that this, together with the bowel surgery, makes the recovery period a bit longer. I've began to give her Ensure drinks to help as she still hasn't got an appetite and I've also tried to encourage her to get up and try walking about a wee bit. I was also hoping to take her along to Maggie's once she's able to travel for a wee gab and cuppa and, hopefully, things will improve enough for me to take her a wee run in the car down the coast for some good fresh sea air. 

I can see by your reply that some of the follow up procedures weren't up to scratch which is not good enough considering the major trauma people have just went through.

Take care 

Hi Mr Mac

I'm so glad to hear that you've had some reassurance from the surgeon.  Fingers crossed that each day will get a bit easier for your wife and that you will begin to see an improvement soon.  Hopefully the weather will pick up too and you'll both be able to get out and about. A wee blink of sunshine works wonders and the seaside will be a real tonic.

Take care.