Fistula

[Duskygem]

Hi ladies, has anyone had a similar experience to me.

I started 3rd line chemo carbo/ gemcitabine in mid April. Within 36 hours or so I started to have horrible abdominal pain. I went to A&E as advised by oncology helpline and they gave me pain killers. A week later I was admitted to hospital.

CT scan showed a fistula (I think that’s right) with my stomach and peritoneum and this has caused a pocket of infection.

I have been really poorly with pain, high temperature, low blood pressure and high infection markers. I have been treated with IV antibiotics and I am now on oral antibiotics and doing ok. I am still in hospital.

I am usually totally on the ball with my health situation but because I have been unwell and because I have seen so many doctors who have all put a slightly different spin on things, I am not really clear on the plan for me. I understand that I will remain an inpatient to see how I get on with oral antibiotics, then no antibiotics.

My situation is going to be presented to MDT this week. The surgeons have already said no to surgery to repair the fistula because my cancer is too advanced. As I understand resuming chemo is risky because it will increase the likelihood of infection recurring. The oncologist has mentioned a feeding tube in my side to by pass the stomach. I am eating and drinking normally now and don’t like the idea of a feeding tube. I know my days are numbered and I want to maximise feel good factors= not being able to eat and drink will be a huge loss to me and will make me miserable.

Has anyone else had this experience and if so what was the outcome?

Thank you ladies

Christine

[Lyndy]

Hi Christine, I am so sorry to see that you are having these issues. I have experienced the IV antibiotics, to oral, to no antibiotics from having a nasty lung infection. Although they are necessary, antibiotics are pretty toxic, so don’t forget that you will feel much better once they are finished. I suggest you (or a family member) tries to get to the bottom of why they are suggesting the feeding tube if you are now eating? Is it for a short time or forever? I went back to chemo after about 2 months recuperating and was fine… so if you are able to do the same you might find you can get back to it safely. You can’t give informed consent (or withhold it) if you don’t fully know what the pros and cons are of what they are suggesting.

I really hope that the antibiotics do their stuff and you start to feel better soon xx

[Duskygem in reply to Lyndy]

Thanks Lyndy, my sister has attended all of my clinic appointments so far and takes notes and asks questions on my behalf but since I have been in hospital (almost three weeks) visitors are not allowed due to covid control so I have missed her-involvement. I feel reassured by your response Lyndy, thank you

[Tillymint61]

Sorry nothing constructive from me just wanted to send you love and positive vibes and a virtual hug. Xx

[Duskygem in reply to Tillymint61]

Thanks Tillymint xx

[Heart12345]

Hi I’ve not had this happen myself but from what I’ve briefly read it looks like they first deal with the infection as the tissues would find it difficult to heal without treating that. Then they control what you eat or give nutrition like they say so as to reduce gastric fluids this further also allows tissues to heal. Maybe ask if there is a time frame they are looking at to do with healing and the length of time on this form of nutrition. As when healed you could most likely eat more normally again. Once totally sorted you possibly will be in a better position to start chemo or something else. I wish you a speedy recovery 🤗xxx

[Duskygem in reply to Heart12345]

Thank you Heart xx