Anyone have any idea what's next?

[Seavccg]

My sister had a bowel perforation following neutropenic sepsis and she's managed to pull through but has a permanent stoma. She's still in hospital 10 days post surgery but the perforated part of the bowel which was repaired is still leaking and the doctors have told her twice now that there are no more surgical options and the leaking part of the bowel has to heal on its own. She is has had another drain inserted and is able to eat. The stoma is working so things are going through and passing the leak. Yesterday she had was given tomato soup for lunch and later that day there was some in the drainage bag. What I don't understand is they are telling her if this doesn't heal there is nothing further they can do, but they don't expand on that. I don't want my sister to spend what time she has left sat in a hospital bed, she may be able to go home or into a hospice but how do we arrange this. If the bowel doesn't stop leaking I suspect she will eventually get an overwhelming infection and they would sedate her and allow her to pass away peacefully but not actually treat her with antibiotics and as they have said there are no further surgical options open to her. I am sick with worry and wondered if anyone had heard of this happening. She was diagnosed in Feb 17 Stage IV and had her omentum removed in March but no reproductive organs removed due to having a frozen pelvis. They said the cancer was dotted across the bowl like a pearl necklace and chemo was the only option, however she was allergic to Taxol and had 5 cycles of carbo/docetaxel before her bowel perforated and the sepsis set in. One oncologist said it was a rare side effect of chemo and she was very unlucky, however I am wondering why they didn't give her any options of quality v quantity and the natraj if having such an awful 4 months she could have opted for a reasonable quality of life with palliative chemo for whatever time she had left. She has been in hospital since early July, cannot walk and since the surgery has a leak which was coming through the incision until the drain was as fitted last night. We are on eggshells wondering which way this situation will go and no one at the hospital is saying much. The stoma nurse told her she could live for years with a stoma and that's true provided the remaining bowel is healthy and it appears not to be in this case. I appreciate as a bowel is a moving piece of tissue healing isn't going to be as quick as a cut to the skin, but this is like torture for her and us as she is as sharp as a pin and sitting in bed wondering what her future holds.

[January-2016-UK]

It does seem as if your sister has been very unlucky. I have no experience of the problems she is facing but I wonder if you are able to ask your questions directly of her medical team? You say they are not saying very much but they might if you ask direct questions. Depending upon what is said, maybe you should seek a second opinion as to the best way forward. Medical teams are used to patients or their families seeking another opinion and it can sometimes be helpful for all.

The Ovacome nurse here may also have advice for you.

Thinking of you and your sister. Best wishes.

[Tesla_7US]

Get a second opinion immediately! Was her bowel further perforated in surgery? Something isn't right with this situation. Or perhaps they are not sharing ALL the information.

[Seavccg in reply to Tesla_7US]

No bowel perforated and it is the repair that is leaking. Stoma working but not all food getting through to stoma.

[Solange]

I'm so sorry to read how poorly your sister is. I'm sorry I can offer no advice as I have no experience of the sort of horrible time you are both having.

I would just like to send my love and sympathy and hope that something will be found to help her. You're obviously a great sister to have, Solange😊

[rppizio]

Is she is on antibiotics now after that type of surgery? If you have medical power of attorney for your sister you should be able to ask the doctor those hard questions. Many times they think the words they choose are crystal clear to the patient but that is not always the case. Stress that you want her quality of life to be a priority from this point on. Keeping you and your family in my thoughts.

[Seavccg]

Have an appointment with her oncology team on Wednesday. She is not on any medication other than peppermint capsules, magnesium and paracetamol apparently.

[Jessica-DianeB]

Hi there.

I'm sorry to hear your sister is poorly. I have no experience of the bowel leaking. However I did have a pancreatic leak post surgery. Which is rare and resulted in a very long hospital stay. I was very poorly and didn't eat for 4 weeks and believe it or not maintained my weight drinking fortijuice alone! 6 per day!

I'm not sure how this may help with bowel issues, but these juices are certainly high in calorie content and may give her bowel a break from processing foods? To help healing ( again I'm no expert or have any experience )

My pancreas healed without further surgery, which would have been risky. I honestly thought I wouldn't make it home but I did.

Don't be afraid to say exactly what you have to us. Your care for your sister is your priority, don't be afraid to speak up.

All the very best xxx

[Eriksendi]

I am having treatment for PPC diagnosed in June 2017. After my 2nd chemo my bowel perforated as well. Had em surgery and have a permanent stoma like your sister. Stoma working. They did no repair to the perforation due to the ongoing treatment. I am now home and eating, tired but recovering slowly. My drain was in for a week and then removed. There will be some movements after the stoma from the bowel just to clear out anything that was there. If there is nothing going through the bowel I was told it would be ok? What is leaking ? I spent 13 nights in hospital.

[Seavccg]

We have two leaks now. Wound under drain leaking yellow serum fluid and leak from bowel into drain which is starting to reduce thankfully. I have made it clear to the Mcmillan nurse that I want to know why it took a week to fit this drain. I am meeting the Oncology doctor tomorrow to discuss my concerns. A junior doctor came round this morning and indicated that my sister may be discharged later this week with district nurse support. I think they are making it up as they go along. She hasn't mobilised for 4 weeks and wouldn't be able to get up the three steps into her house not to mention u to her bedroom on the first floor.

[Eriksendi in reply to Seavccg]

I don't know what is right or wrong but can only say my drain was fitted at the time of the op under the stoma. It was left for about 10 days and monitored and measured every day. The only difference seems to be that your sister has had a repair to her bowel as well whereas mine has just been completely bypassed and left. I got up after 2 days , a huge effort but I knew it was my only way out of hospital. They say they can restart chemo after this set back and will still carry out my debulking surgery provided everything proceeds ok. Tell your sister to have belief, dig her heels in and fight. I even went to the pub yesterday and managed to eat a meal just 2 weeks after surgery. She will get there. Lots of love and hugs to her x x x