Hello
in may I went into a&e with severe pain. Ended up being bowel cancer. They removed the tumour I had the worst surgeon ever and ended up with Enterocutaneous Fistula as he did not mend the bowel well then blamed it on the stress of covid. Anyway sadly now the cancer has spread to my lungs and I have had one round of chemo. The chemo is fine but I am in severe pain due to the bowel fistula. I’ve been like this for 9 months but the pain is getting worst. I need surgery to fixed the bowel but my doctor said they are too busy due to covid and now I’m on chemo I can’t have it. So I’m in constant pain every day and having to change my fistula bag daily. I’m becoming more and more down. I am 39 and have 2 young children. I honestly can’t bear living like this, in pain and feeling uncomfortable all the time. I have nutrition TPN as I don’t digest any food or drink. I’m constantly emptying my bag..it’s just awful.
I thought I’d come on here for support and to see if anyone else is going through this with the fistula.
X
Hi El40 and a very warm welcome to the online community. I'm sorry to read that you have now been diagnosed with Lung Cancer and the pain you are suffering with the Enterocutaneous Fistula left after your Bowel surgery. Although I didn't have the same diagnosis as you, I know what a difficult time waiting for a treatment plan is and to be in constant pain is so debilitating.
The online community is divided up into different support groups so I'm going to recommend that you join the Bowel cancer and Lung cancer forums where you can ask questions, share experiences and get support from others who have these diagnoses.
To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
It might be a good idea to ask a Nurse on our Ask an Expert forum for further advice but allow a couple of days for their reply.
Sending you welcoming hugs, B xx
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