Five weeks later - not feeling so good

Hi its good to hear that you have got tbrough your op but not good to hear that you are feeling this way

I am sure others will be on soon with lots of advice.

Just one thought to be going on with .why are you bending over the loo to change your bag?no point getting a bad back to add to everything else

Do continue to let us know hiw things are going.

Kath

Hi Limassol

I’m sorry to hear you are findings things so difficult right now. I felt I turned a corner 6 weeks out of hospital as my constant vomiting stopped and I started to get a little bit of appetite back. My surgery was obviously very different though. I did lose 3.5 stone, so I was very weak for some time. 

One thing I would say is not to bend over the loo to change the bag. I have never done that. Initially I found it very difficult to stand as I was so weak, so I changed my 2 bags while on my bed. I still do that now, 2 years later. I lay a towel down on the bed after my shower, get all my supplies together and sort everything out on the bed. I find that the easiest way to deal with things, and avoid pressure on my back. 

You have been through a lot with treatment and surgery, so your body needs time to recover and I’ve found you can’t rush it, or put too much pressure on yourself. There’s also the mental aspect of the changes you have gone through. It can all hit you afterwards and make you feel really low. It’s really positive that you are at least managing a walk every day at this stage. 

I kind of hit a wall quite a long time after surgery and got very anxious and tearful. I accessed counselling via Macmillan and found it really helpful. It must be particularly hard living on your own, so maybe it would help to have someone professional to speak to? I found my surgeon assumed she fixed everything with the surgery, and there wasn’t any real understanding of the psychological aspects of this. 

It was a couple of months before I went further than round the block for a walk, and took a trip to walk round a nature reserve. I was still using a walking stick, but it felt really good! Don’t expect too much too quickly would be my main piece of advice, and I hope things will start to improve for you as time goes on.

Sarah xx

Hi Limassol,I’m so sorry you are struggling.I didn’t have the same operation but I found the early weeks post surgery very hard.I was on my own and would suddenly get tearful or anxious.I had coped well up until that point but it suddenly hit me that I’d had cancer and major surgery.One of the ward doctors had told me to expect bad days/weeks and said it will be a rollercoaster of emotions after major surgery.I was grateful he said that.By 12 weeks post op I felt much better mentally and physically.It is good that you are walking every day.I feel sure that things will get better for you as time goes by,it is still early in your recovery.Best wishes Jane

Hi. Thanks for getting back in touch. I remember your  helpful replies to my first post.

The reason I bend over the loo to change the bag is that I have an ongoing problem with pancaking and when I remove the bag the pancake "plug" comes away and often the stoma starts pumping out pooh. After the first time this made a huge mess, I started changing the bag over the loo. Hopefully as I get the output more under control I will be able to try other methods.

Limassol

Thanks Sarah

This is very helpful. It looks like I was being overambitious about the recovery timescale. My surgeon seemed to think that once they had sewn you up it was "job done" and all the emphasis from the nurses too is on getting back to a "normal" life. So I was really beginning to feel like a failure when I started feeling worse emotionally/psychologically rather than better. I will try and reset my expectations. Getting some counselling sounds like a good idea too.

I have "only" lost 1.5 stone but still feel very weak. 3.5 stone is a huge weight lost - I am not surprised you were weak for a long time. I am already using a stick to get about. I used to be a semi-serious walker doing 10/12 miles with my walking group so I really hope to get back to that eventually though it is clear now it will be months (years?) rather than weeks. 

The reason I bend over the loo to change the bag is because of my problem with pancaking. When I remove the bag the pancake "plug" comes away and sometimes the stoma starts pumping out pooh. So now I change the bag over the loo. Once I get the output more under control I will start to try other methods.

Limassol

Hi Limassol. You’ve had some amazing replies so far so I’m just going to add a couple of practical points. There used to be a guy on here called Bodach who was an absolutely expert on all things stoma so here’s a link to a reply that he did a couple of years ago about pancaking

https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/f/ileostomy_and_colostomy_discussions-forum/186082/pancaking-with-colostomy

Have you tried changing your bag over the bathroom basin or putting a bowl over the basin if you prefer? It would be a lot easier on your back and you can set everything out beforehand on the windowsill.

Please give the support nurses on here a ring for a chat? They’re available 7 days a week from 8-8 on 0808 808 00 00

Take care

Karen x

Morning Limassol

With my particular surgery, I was advised by others who had gone through it to expect my recovery to take a year. They weren’t wrong! It felt like I’d been hit by a truck to be honest. I think we are all a bit guilty of expecting too much too soon-my recovery was very up and down, especially at the beginning. I do feel much much better now, 2 years out, but I’ll probably never be quite the same. I’m more accepting now-and if I need to rest, I listen to my body and have a nap.

Building your strength up takes time-our bodies are using all their reserves to heal after such trauma. You are very soon after surgery-I was probably still spending a lot of time in bed at your stage! 

I understand the pancaking issues, I still have this regularly, and when it “comes away”, I too can have the tsunami of poo! I have become very adept with a roll of extra strength kitchen roll! It does take time to adapt to a stoma, in my case 2, and sometimes I feel I need a few pairs of hands.

But be kind to yourself and accept that this is tough. You are absolutely not a failure at all-recovery is not a simple linear process and the psychological effects are massive. 

Karen’s idea of changing over the basin is a really good one to help with your back. You have enough going on without straining yourself there. 

Sarah xx

Hi.have you tried changing your bag over the bathroom basin.I line it with a couple of dry wipes in case of leakage,you could use kitchen roll if you prefer.

Then anything can be scooped up and popped into a disposal bag.

My stoma nurse suggested this method and it has worked perfectly for me.

Hoping you are soon feeling your old self

Kath

Thanks. It's good to hear from someone else who has been through this while living alone. I wish my doctors had given me the same sort of advice as you got instead of more or less implying that once the tumour was removed everything would get get back to normal reasonably quickly. Like you, I coped well before surgery. Five weeks of radiotherapy and 18 weeks of chemo was hard going but it never once had me in tears, probably because I could see it was a means to an end. Reading your and the other replies, it is clear I had unrealistic expectations about my recovery time. I am trying to reset my expectations.

Limassol

Hi Karen

That's a brilliant idea about the washbasin! I will definitely try it. I am now on my third bad of the morning (my first change was at 6.30) but on previous form it will probably be quiet now until mid-afternoon.  This isn't because I have masses of output but because the pancaking blocks the stoma and it the bag then starts straining at my skin.

My stoma nurse has ordered some different bags for me where I can block the filter, also some lubricant for the bag. I'm hoping this will help. I spoke to the McMillan nurses a few times before surgery and Colostomy UK also has a useful helpline but I find speaking to someone with direct experience is much more helpful.

Thanks for the link.

Limassol