Fistula

[Duskygem]

Hi ladies

After the first cycle of gemcitabine/carbo given as third line chemo. I developed a fistula between my stomach and small bowel. I was very poorly with sepsis and spent almost a month in hospital. Since then I had another cycle of gem/carbo and ended up in hospital again. Chemo is on hold for a little while now while my oncologist speaks to the surgical team to see if they can repair the damage to my stomach. I am in a lot of pain and having to take heavy duty meds.

Has this happened to anyone else and if so what was the outcome.

Kind regards

Christine x

[Mossey]

On I'm so sorry. I hope the pain will slowly get better. Please take care xx

[Duskygem in reply to Mossey]

Thank you

[Realistic]

So very sorry hope you soon feel better..love ,& hugs for a speedy recovery. Xxx

[Duskygem in reply to Realistic]

Thank you

[Bananasmoothie]

It sounds like you've been through the mill. I do hope things improve for you.A fistula can happen when a bit of tumour sticks to two bits of gut and erodes a hole that then connects those two bits. Sometimes there's leakage out of the affected bits of gut and this can be what causes sepsis and pain.

If there's been leakage one option is to let things settle by themselves - the aim being that the body 'fixes' the leak and you end up with a connection between the two bits of bowel (stomach and small bowel in your case) which acts as a shortcut but hopefully causes little in the way of any symptoms and doesn't need any surgery.

An alternative would be to consider operating to try to sew up the hole in each bit of gut. It's difficult to predict how this sort of operation will go; sometimes it can be relatively straightforward, and sometimes it can be very challenging. Sometimes a stoma bag needs to be formed and sometimes not. The scans don't always help in knowing how the situation will be at surgery.

Both alternatives mean a delay in chemo. It can be really difficult to know which is going to be the best option, and the surgeon may well ask their MDT for their opinions. There can be other individual factors that change the options / advice.

My advice would be to ask to speak to the surgeon and write all your questions down beforehand. You may also want to have someone with you as 4 ears can be better than 2 for complex discussions!

I hope this is helpful, and that you start to feel better soon. X

[Duskygem in reply to Bananasmoothie]

Thank you for your reply Bananasmoothie you clearly know about these things. I am not confident surgery will be considered the way forward for me, my oncologist explained that the disease in the fistula area might prevent healing after surgery and that would cause an even bigger problem. Do you think the chemo caused the fistula or would it have happened anyway? I think it was the chemo because I started to have pain 48 hours after the first gem/carbo.

Kind regards

Christine

[Bananasmoothie in reply to Duskygem]

Hi Christine,

Sometimes a fistula will happen anyway because it's the effect of the cancer. Sometimes when chemo melts away a tumour that's been growing into the wall of the gut it leaves a hole ie fistula.

I described surgery as sewing up the hole but in fact it's rare that this can be done without removing the section with the hole and then sewing what's left back together. If this doesn't heal well because both the disease and chemo can badly affect it, then the area can leak again.

Surgery is not always the best option. I'm sure your doctors will have thought very carefully about how best to advise you and I hope they have / will let you know some of their reasoning. Because it's so difficult to be certain how people will recover whether or not surgery is considered it's quite usual to keep things under review.

Hugs x

[delia2]

I’m so sorry to hear what you’re going through! I have no advice but send positive thoughts and hugs.

[Duskygem in reply to delia2]

Thank you Delia2

[Trickysite]

Hope you soon have the pain well under control and plan to get out my magic wand to make it heal itself. Remember, you can always get a 2nd opinion on the NHS. Xx

[Duskygem in reply to Trickysite]

Thank you xxx

[SUE7777]

This is awful and I'm really sorry. I hope you soon feel much better and can enjoy life again. Sue xx

[Duskygem in reply to SUE7777]

Thank you xxx

[thejoannabell]

I am currently on Avastin (Bevacizumab), and development of a fistula is one of the possible side effects of that medication. Since this is third line for you, I am wondering if you have ever been given avastin. However, I don't know if having had Avastin in the past increases the risk in the future. I hope that your team will develop a plan that will relieve your pain and get you on the road to recovery soon!

[Duskygem in reply to thejoannabell]

Hi Joannabell,I had avastin for about 10 months - 2019 - 2020 after first line chemo. I was fine on this treatment although towards the end my ca125 started to climb and within a few months I was having chemo again, carbo/ caelyx.

Thank you for your good wishes and all the best with avastin

Kind regards

Christine