Acute pancreatitis

Hi this is my first time posting. 

I'm doing this on behalf of my Mum, as she is going through a very tough time and I would like to get in touch with anyone who is experiencing the same or has any information on what to expect after losing their pancreas. 

My mums problems began last July (2017) only 2 weeks after her 60th birthday. Without any warning she developed severe abdominal pain which came on all of a sudden, along with sickness, loss of consciousness, cold sweat and her condition continued to deteriorate, so she was rushed into a & e, and put on morphine which didn't help with the pain for a good while. 

After a CT scan the following day, we were told she had gallstones which had caused the pancreas to become very inflamed, and that she would need an operation to remove her gallbladder. After continuing to become more ill over the next few days, they decided she was not well enough for the operation. 

Weeks passed by in hospital, she was being fed through a tube in her nose, she suffered from terrible diarrhoea, fluid in her lungs, very swollen legs, she also had to have biliary drainage and we just noticed her getting more poorly as each week passed and we were getting no answers from any doctors as to what was actually going on. 

After 3 weeks a scan had shown up an abscess on her pancreas, which they put a drain in to remove puss from pockets on the pancreas, but they also mentioned puss was surrounding other organs - Acute pancreatitis with pseudocysts. 

After 4 weeks she got moved into critical care as fluid had built up everywhere in her body, however we were told she was responding well to diuretics, and finally a consultant sat us down to explain what had been happening over the past 4 weeks. My Dad & I left feeling positive that things were finally moving in the right direction...how wrong we were. 

Less than 12hrs later we had a call from a surgeon to say she had to be operated on immediately to remove dead tissue, and that there was a 1 in 4 chance she wouldn't make it through the operation. We were in absolute shock and disbelief. She was in theatre for a few hours, and was kept sedated for the next 7 days due to breathing issues. They explained during the operation they had removed dead cells and put a larger drain in a infected pocket on the pancreas, which would need to be flushed out regularly to stop any more infection building up. After 2 days in critical care, 6.5ltrs of fluid had been drained off her. 

When she finally got moved out of critical care and she said she'd been told her pancreas had died, and that she'd got diabetes. But as she'd been having the most unbelievable visions due to the constant morphine, and was extremely confused, we assumed as a doctor had not mentioned this to us that maybe it wasn't true.

So we were now on week 6, at this stage she was hardly able to walk, so physio had now started and she was allowed to start trying to eat soft food. We believed things were again heading in the right direction, but yet again we were wrong. The surgeon phoned and said that yes the pancreas was dead, and that a main vein supplying blood from the stomach to the liver was blocked, and that she was in a life threatening condition. He was worried the stomach could turn gangrenous and confirmed that she would be a diabetic for the rest of her life. The days continued to pass, she always complained after eating that she had bad tummy pains and her legs became extremely red and swollen. She had numerous scans and X-rays and after having been in hospital for 8 weeks, the surgeon said she would still need to remain in for another 6 weeks. Over this time she continued to have on going problems with fluid on her lungs, and had to have drains inserted to help get rid of the build up. She also had to have a blood transfusion. 

My Dad and I finally met the surgeon face to face 11 weeks after she was first admitted. 

He explained how the dead pancreas would collect around the drain and come out through it. He said the blocked vein from stomach to liver, was still blocked however there are other veins which would bypass the blockage. That with her diabetes was type 1, and she would need to inject herself with insulin, and that she would need to take creon tablets before eating for the rest of her life. He was pleased with the pancreas drain, and said it's doing its job when the colour was murky and full of bits. Her recovery time was made very clear, that she has a long road ahead of her, and this could take many months. 

More days passed, and after suffering with the extremely swollen, tight, red, angry looking legs for around 5 weeks, she was finally given something to help with the swelling, and was also given kreamoint ointment. 

After 12 weeks she finally had the feeding tube removed from her nose. 

And after 14weeks we were finally allowed to take her home, and the huge task of building up her strength and appetite began. 

She had only been home around 5 weeks when all of a sudden, without any warning she had a huge bleed. After being rushed into a & e again, 4 units of blood later, she remained in hospital for 10 days. Scans were done, but we were never told 100% what had caused the bleed - which has caused a lot of worry as to whether it could happen again in the future. Possibly a blood clot dispersing was mentioned. 

Once at home again, she struggled to eat much, continuing to say that she would get pains after eating and would become very bloated and would sit there rubbing her tummy. The diabetes created its own set of problems, her sugar levels went from one extreme to the other, as low as 1.7, and as high as 30+ 

A couple of weeks passed and as the pancreas drain is only held in with 2 stitches, she had problems with the stitches coming out and finally the whole tube unexpectedly came out one day. Another trip back to a & e, showed up an infection, so she was given antibiotics and they simply put a stoma bag over the hole to catch any fluid coming out. Bearing in mind the drain is emptied daily, measuring 200ml+ and then this went down drastically to only 50ml when the tube came out. Which caused her a lot of worry as she wanted to know where the extra fluid would be going if it wasn't being drained out of her. After 4 days, the surgeon finally arranged another smaller tube to be inserted. Once again this had its own set of problems and continually leaks due to its position on her back. We started to notice she wasn't making any progress and seemed to be going backwards, having no energy at all, weight loss, hair loss and just didn't look well in herself. She had a whole day of her blood sugar  levels being extremely high, and yet again ended up back at a & e last week and a blood test showed up another infection. She's been kept in hospital for the past week, she has a few antibiotic drips every day and has had another drain put in her back to drain off pockets of puss that have built up, but there's been no mention of when she can go home. 

My Dad and I visit her everyday, we have done from the very start, and it's been the most extremely draining process physically and mentally for all of us as a family. 

We would like to hear from anyone who has also completely lost their pancreas - such as what can she expect long term? or anyone who can relate to anything she has gone through. 

She struggles with depression and gets very upset by everything she's having to go through, as it seems like it's always one step forward and two steps back. 

We're also surprised by the amount of fluid still coming out of the drain, as it's been in for approx 7 months now. 

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