Bile duct stent & sepsis....

[Ukkird]

Hi all,

I've been lurking around this forum reading many of your stories, marvelling at your bravery and shedding a wee tear when things don't have the best outcome. This disease is a complete *rse.

I love the feeling of community that seems to exist here and know that the ability to put your story down in writing or just to have somewhere to vent that is removed from your immediate circle is immensely helpful.

Just a quick overview of my dad's 'journey' with this hideous disease before I ask my question of this wonderful community.

I live in New Zealand but have been in the UK to be with dad and support my family since Sept 1st.

Dad (74) has suffered with 'tummy troubles' probably for the past 3 years or so. Last year he had a bout of prolonged diarrhoea which lasted about 3 months. He finally paid to have a colonoscopy which was clear; there was no suggestion by his medical advisers to have any further investigation.

He was diagnosed with myelodysplasia (a blood disorder which causes anaemia) in about June this year and is having weekly Eprex injections and daily folic acid to manage that. He was losing weight a rate of knots throughout this and still having 'a funny tum'. He finally got to see a GI specialist who ordered an endoscopy which revealed something in the lining of his stomach.... this was in about August this year. Cue the usual scans and it was revealed that there was a mass in pylorus / upper duodenum / head of the pancreas. He then had an inconclusive biopsy (couldn't determine which was the primary cancer) but was told to only eat a soft / liquid diet & that if he started vomitting to head straight to A&E as this would indicate a blockage in his stomach. At this stage he had lost 22kg in weight and was eating like a flea. I arrived from NZ on Sept 2 and on Sept 5, dad vomitted. Took him to A&E at our local hospital and waited until he was admitted to a ward; basically said I wasn't leaving him there sitting in A&E when he was so poorly he could barely sit upright.

4 days later they did a gastric jejunostomy which, after a few teething problems, gave him a new (ish) lease on life as he was eventually able to eat a completely normal diet again. I will add that he had 13 days in hospital and for 11 of those his only source of nutrition was whatever was in his saline drip. We'd pushed for TPN (deep vein feeding) which should've happened on the Weds of his surgery but was 'missed' by the nutrition team; it was finally put into place in the wee hours of the following Tuesday. Such a stressful time... other unfortunate stuff happened in there which I won't go into here.

We got him home on Sept 17th in a terrible state... like the walking dead.

Just as a side note, 6 days after we got dad from hospital, he suffered a faecal impaction... I don't recommend this to anyone if you ever want to be able to look at chocolate Angel Delight again; he was completely incontinent (from the pooper) for 3 days and IT WAS HORRIFIC.... so my advice is DO become unnaturally fascinated by your loved one's bowel movements post hospitalisation or at any time during their ride on this hideous rollercoaster.

The surgeon who did the gastric jej, took another biopsy which was also inconclusive, still no primary. He finally had a specialised biliary scan a couple of weeks later and we received a firm diagnosis. Stage IV adenocarcinoma at the head of the pancreas with spread to the areas mentioned earlier, a few lymph nodes affected, slight dilation in liver nodes and the start of ascites. This was at the end of Sept. Inoperable... chemo only hope which would offer a couple of extra months. We saw an oncologist face to face twice....

Dad decided he'd rather have quality of life and declined the chemo. We meandered through Oct in a fairly stable holding pattern; dad was eating pretty well, not gaining any weight but not losing any, not in any pain. I got a poop test done to see if there was any pancreatic insufficiency and if need to supplement with Creon (or is it Kreon?). Anyway, that came back fine, so no malabsorption.

We support dad's decision not to have chemo but felt as though we were just doing nothing so decided to get a second opinion when somebody recommended someone to my sister. He was a pancreatic surgeon... after a few weeks of to-ing and fro-ing we had a phone consult with him; he was lovely. He agreed with the diagnosis but thought that the '2 months' was perhaps a tad pessimistic and that dad could gain more like 12-18 months with chemo, which gave him reason to reassess his thinking. He recommended one of his pancreatic oncology colleagues who we had a phone consult with. She again agreed with the diagnosis but said that the 12-18 months would have been if dad had been put on the big gun "F word" chemo; due to his underlying blood condition which is already attacking his bone marrow, she said that 2 rounds of it would floor him and that really Gemcitibin would be his only choice which is far gentler but correspondingly not as aggressive at fighting the disease and this is where the first consultant got his '2 months' from. So dad stuck with his original 'no thanks'....

Anyway, fast forward to now. Dad is seriously skinny but eating well, no pain apart from the odd twinge which he takes paracetamol for or tramadol if it's more than a twinge (I know there will by some 'huhs??' over the tramadol use... it's a long story!) , he gets up, dressed up and showered every day and usually heads into his business for a few hours in the morning but flakes out for a few hours in the afternoon, gets up for dinner and is in bed for the night at about 8pm.

We've been wombling along wondering when everything would go pear shaped and it has.Tuesday night this week I commented to my sister that he looked a wee bit yellow around the gills and she agreed; his wee was looking a bit dark too... I know he doesn't drink enough during the day so was hoping it wasn't jaundice, maybe dehydration. Coincidentally we had a routine follow up with his gastro jej surgeon yday (Friday) who agreed that he looked a bit yellow. Ordered urgent bloods which indicated elevated bilirubin (94) but excellent kidney function. I had a chat with his specialist nurse about the implications of this on Fri night and the plan is to get him into hospital asap Monday morning for an MRI and stent to drain his bile collection. Due to his gastric jej he can't have the usual endoscopic stent procedure but has to has it percutaneously. He isn't in any pain but is absolutely whacked and for the first time in a long time today just stayed in his PJs all day.

I've been reading about the stents on here and sepsis seems to be a worryingly common thing post procedure. Just wondering if anyone can share their experiences of it please?

Dad is already very low in mood at the moment and after spending 13 days in this hospital that shall remain nameless we were adamant that we didn't want him readmitted there; we were told that short of him breaking a limb, the only reason he would have to go back in is due to a bile duct blockage.

Thanks for reading everybody... you're an amazing bunch.

[PCUK Nurse Dianne]

Dear Ukkird,

Thank you for your lovely post and welcome to this forum. As you say, there is a real sense of 'family and community' on this forum. It always lovely to see you all supporting each other through some of the more positive times, and those that are more difficult.

I am sure this has not been an easy time for you either Ukkird being away from your home and possibly family, however i am sure Dad values your wonderful care and support at this time. Well done on all you are doing in supporting him.

You are absolutely correct about the risk of sepsis post insertion of a stent. There are a few signs that you might be aware of and to be cognisant of if Dad is not feeling so well. Suddenly being a bit 'off colour', feeling sick or vomiting, off food are some signs. The other very important one is if Dad should complain of being 'cold and shivery', especially if he is already rugged up and heating is on. With an infection/sepsis, people will often have a very high temperature, ie usually greater than 38.5 degrees and feel cold. Our body's mechanism with a high temperature is to shiver and bring the temperature down - we know this as a 'rigor'. This is a key sign, and one to be calling about. If Dad does develop any of these symptoms, ideally best to touch base with one of Dad's team.

I note Dad has a specialist nurse who sounds very supportive, you may also use our Support line service for any guidance. In an 'out of hours' situation Ukkird, I wonder if you have any local resources. You can use the 111 service as this is also brilliant and will be able to direct you or arrange for an 'on call' Doctor to review.

I hope this is helpful, and please do not hesitate to be in touch with us at anytime if we may be of support to you.

With kindest regards,

Dianne

Pancreatic Cancer Specialist nurse

Pancreatic Cancer UK

Support line: 0808 801 0707

M-F 0900-1600 hrs

Wed 1000 - 1800hrs

Email: nurse@pancreaticcancer.org.uk

[Ukkird]

Hi Dianne,

I've only just checked this again as I didn't get any notification that you had replied. Thanks so much for your time.

Dad had his first procedure on Weds 16th Dec which left him with an external bag; he became unwell the night after and ended up in a random ward (endocrinology & diabetes!) with 3 elderly dementia patients. I managed to see him on the ward the following day and was horrified at the state he was in. I managed to get him transferred to a side room on the same room and the lovely consultant in charge of the ward took us under her wing a bit. He was put on antibiotics and improved slightly but tehn the weekend hit; Saturday night saw him very unwell again and I managed to talk to one of the oncall doctors.I asked if he could be put on IV fluids as I was concerned about dehydration due to vomitting. He said dad's haemoglobin levels were dropping so he wanted to investigate the possibility of an internal bleed. When I phoned the next morning he was being sent down for an endoscopy to see if the bleed was in his stomach; I told one of the staff taking him down to please note the gastro-jej he had had done in September. A couple of hours later, I was phoned to say that his stomach was blocked and he had to be on liquid foods only.... (turns out his jej is still working fine, they'd looked at his pylorus which we KNEW was blocked, hence the jej in September but they didn't even note the jej during the endoscopy! Took us an unnecessary worried week to be certain that it was still working).

He had his external drain replaced by a stent on Dec 22nd; the surgeon who did it noted that there had been further progression of the disease into his liver ducts in the 6 days since the first procedure and that he thought that that as a result only 30-40% of the bile would drain away.

We said we wanted him home for christmas so they kept him for 24 hours for observation and he was delivered to us by ambulance, late on the 23rd. We had a lovely night with him in the downstairs bedroom we'd created in his absence, but then received a call on christmas eve morning to say that his CoVid test from the 22nd had come back positive; unbelieveable (

We were all isolated until Jan 2 and literally going into dad's room for the absolute necessities only... he was completely asymptomatic and none of the rest of us in our 'bubble' displayed any symptoms either; we're wondering if it was a false positive although the consultant from the hospital ward assures me that the PCR tests are pretty bang on! Who knows???

So now we're on a plateau & playing a waiting game. His jej is working, his stent is working better than they predicted, he's comfortable and is eating (albeit not very much), he's in no pain and spends 90% of his time in bed but can hobble to the loo like a cross between a pyjama-ed Steptoe and a praying mantis (sorry - in poor taste but that's how we're getting through this). He's completely 'with it' and capable of being an enormous pain in the backside (his speciality, although he certainly has good cause now). We've been in close contact with Isabel Hospice and the District Nursing team and have 'just in case' meds coming out of our ears. Just waiting for the next drama to unfold which we'll deal with as and when.

That's it for now.

Thanks again & happy (crappy?) new year....