My husband (69 years old) was diagnosed with necrotising pancreatitis early February 2023. He worked on the Saturday and was in ITU on a ventilator on the following Tuesday!!
He then spent 120 days in ITU with 100 of those days in an induced coma and 118 of those days on a ventilator.
Sepsis, pseudocyst drained in a London hospital, ascites (7 litres drained from abdomen and lungs), DVTs on portal, Splenic and internal jugular veins. type 1 respiratory failure plus various other minor issues too numerous to mention here.
He had to learn to swallow/talk/move as all muscles withered
As of last week in July he is home now with several DVTs due to lines in neck and also on hepatic and portal veins so warfarin is our friend.
He is now walking with crutches; can talk and swallow but has no appetite and nausea when eats too much so Ensure is also our friend.
He has Pancreatic insufficiency so CREON with all food however whatever is left of his pancreas still is coping with reduced food intake as not currently needing insulin support.
Wife slowly mad 🤪🤪
Does anyone recognise the above journey? Would be lovely to reach out and chat with anyone who has walked a similar path and perhaps are able to give us tips on recovery to as good as he can get?
Thank you for reading.
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Frazzled88
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I was told he probably wouldn't survive this, but he is home.
He has no stamina but is walking, talking and albeit a bit skinny so far things are going OK although the post ITU mood swings are a bit difficult at times.
Oh my goodness! That's huge for both of you to go through! I can't help either but, like Jackie, am sending you hugs 🤗 That sounds just a horrendous journey to travel! I can't help but I really hope things continue to improve! And here is a good place to rant and rave....even if we haven't done the same journey, all of us have been through a medical journey and understood the frustrations and what goes with it. Dee
Hi madonbrew - thank you for taking the time to answer.
Yes - it is a huge thing for him. But I am realising also for me. I must admit there are times I feel cheated of the retirement we had planned (walking and travelling, etc) but hopefully things will get better.
Meanwhile I celebrate each day that he is alive and help (not too much as a bit of tough love is needed sometimes) and encourage him as much as possible.
I feel you in feeling cheated of a life by this horrible inflammation. My husband is 37 and still in ITU with severe necrotising pancreatitis he has had two months so far on varying levels of sedation and remains on a ventilator with respiratory failure. He also has two drains currently draining and discussion of a stent on his pancreas later this week. It is such a slow treatment process. I don't know anyone that has had pancreatitis and I am so shocked you could get so unwell so quickly with it.
I do hold on to the hope that one day we will be able to enjoy life again with a renewed sense of appreciation.
Yes, I've walked your husband's journey. I went to work one Tuesday and by the end of the day I was in a coma in the hospital. By Friday I was in multiple organ failure on a ventilator. I was diagnosed with necrotizing pancreatitis with pseudocyst and recurrent sepsis. I spent 90 days in the ICU in a coma. I had 4 back-to-back surgeries to clean out the infection in my abdomen and remove my gallbladder. My husband was told multiple times that I might not survive. I spent another 6 weeks in rehab learning to walk, talk and use all my muscles again.
That was 13 years ago. Recovery is a slow and sometimes a frustrating process. Our bodies are made to move. Be patient. When he feels good, do what he can. I would tire out very easily. Sometimes my progress would be slow. I learned to accept progress is progress no matter how little. Just take this one day at a time.
My occupational therapist helped me to understand for every one day you lay in bed it takes your body 3-4 days to recover. That helped me to understand that recovery was going to take time and to be patient with the process.
I didn't have to go on insulin either after my original illness. But I would keep an eye on it, just to be sure. If he ever does start to have higher blood sugar go to an endocrinologist for treatment, because diabetes due to pancreatitis should be treated differently.
Any questions you have I would be happy to answer.
Thank you for taking the time to reply to me. Your journey sounds so familiar with regard to the recurrent sepsis, coma and pseudocyst and being told in all probability this was unsurvivable.
My husband has yet to have his gall bladder removed (all this caused by a stuck gall stone) as his Consultant is reluctant to at the moment as he is not strong enough should there be any complications which in all probability is likely as all will be "stuck" together inside with scar tissue.
So we wait and continue with taking life one day at a time doing his exercises and walking practice and resting as much as necessary.
We had little input from the OT while in hospital (and none since discharge) but the physio team were fantastic and we have engaged with a physio privately since discharge. We were also told about the one day in bed taking 3-4 days to recover so understand the recovery will take time. I was also told husband might never get back to where he was but that 80 - 90% was achievable.
May I ask - how is your appetite? My husband never feels hungry and loses weight at the drop of a hat as he finds it difficult to eat sufficient. He does drink 2 - 3 Ensure per day but is this something that we can expect for ever?
Don't push the food at the moment. He is starting to heal, but probably is dealing with some nausea. It's better for him to keep down what he eats, rather than eat more than his system is ready to digest and vomit it all up. It took time to get where I could eat more food. Eventually, some of my appetite did return.
Exhaustion is understandable. Because he was in a coma so long everything is work . I experienced the same thing. Just sitting up was hard. Much less learning to walk again. A simple thing like holding a spoon or fork is exhausting. Having to focus on everything and learning how to move again. Every movement we take for granted, after being in a coma is work. It does get easier, but it will take time.
My recovery was not straightforward. I struggled with a lot of nausea and pain. So, I spent some long nights in the ER waiting to be seen. But over time it did get better. Just take it one day at a time.
By the way, my pancreatitis was also caused by gallstones.
Hi there Signingfun - I hope you are feeling well today.
I do not think I am not pushing the food (or at least I don't feel I am) but I do worry about his reliance on Ensure drinks to maintain his weight. HOWEVER you are absolutely right its better he eats a small amount and remains pain free with no nausea than eat too much and regret it.
He does have anti sickness meds to take should the nausea become unmanageable but he feels better to try not to need it.
We seem to be falling into a pattern of morning activity (exercises, going out for coffee and walking practice) then rest/nap then "home based" activities, nap followed by a short walk "around the block" then dinner, TV and bed. It seems to be working for him in that rest is programmed throughout the day where he can shut down his mind even if he doesn't sleep.
I am sure things will evolve as he recovery progresses. I just need to be mindful that recovery will not be linear and there will be good but also "bad" days but as I am a constantly moving "gym rat" I do find the slower pace of life challenging.
Today is a good day. I'm dog sitting a little 12-pound poodle. He does silly things and makes me laugh and smile.
That sounds like a wonderful schedule. I also tired out easily when I first left the hospital. I still need to pace myself, but I have more stamina now. You'll be surprised in a month how far he'll be. Even his eating will improve over time.
You're right patience is key. Just keep celebrating that he has survived... that is a huge blessing.
Hi there Signingfun - sorry I missed this yesterday and therefore didn't reply.
I am so happy for you that yesterday was a good day and I hope today was too.
We used to have a dog (sadly no longer) and they are absolutely brilliant at sensing what you need and providing it. I am glad he made you laugh.
The schedule is flexible and tends to be driven by him and his needs and I am quite happy to toddle along with it. His physiotherapist was back today (we call her the Velvet Fist as she is smooth and soft and wonderful but works him so very hard with "just one more then a rest") and she told him she was so very happy at the progress he had made.
This made him happy.
His mood is definitely getting better the more he can see progress - he is even beginning to show interest in his hobby room as his hands are now able to hold tools and I celebrate every time I hear the chair in his den roll around on the wooden floor upstairs.
I shall remain (trying to be) a patient wife but it is so not me as I was at the back of the queue when it was given out and continue to remind myself that I have so much to be grateful for 😛
Frazzled 🙃
Hi there, I think you're doing an absolutely fantastic job looking after your husband. It can't be easy for either of you. Sounds like he's putting up a fantastic fight too! I don't have necrotizing pancreatitis but I did have a huge pseudocyst that fortunately drained itself but it took about 11 months to drain and by then I had lost 3 stones and could barely walk. I have spoken to a specialist pancreatic dietician who suggested the Ensure and small portions of food regularly also wholemeal bread with seeds is really good for us, my tummy loves it!. You possibly know these things anyway but I felt I had to say in case nobody has suggested it already. One other thing, look after yourself. Looking after us with pancreatic problems is draning for you carers and sometimes you forget how important you and your health are. I hope your hubby continues to improve quickly and with your loving care, I'm sure he will.x
Hi there Hidden - thank you for taking the time to reply to my post
No it isn't easy. We had so many plans for this year re travelling but all on hold in the hope he can gain enough back to travel next year. Very occasionally I find myself feeling sorry for myself and feeling a little "robbed" but them I remember that I was told several times that he would not survive and I snap out of it as I would rather have him here than not.
Husband had a huge pseudocyst that, once it was walled off, meant he was transferred to a different hospital (still in a coma and on a ventilator) where it was endoscopically drained and 3 stents put into it to continuously drain it into the stomach. He was then returned to our local ITU after a week. Apparently they got 1.5litres of pus and dead pancreas out of it initially.
Husband has little (no) appetite now but drinks one Ensure with each meal and with the CREON (and other meds) is managing to just about maintain his weight although he lost 15kg in hospital. I try to get him to snack in-between meals (usually on fruit bread or tea cake) but he is very uninterested. Apart from that, currently we are experiencing very little issues with abdomen (thankfully no pain) or bowels at the moment although getting his warfarin dose to maintain suitable INR is proving a little more difficult that first imagined..
The main issue now (apart from the lack of appetite) is the sheer exhaustion that overwhelms him following any exercise and also the low mood both of which will (fingers crossed) get better with time (he has only been out of hospital for 6 weeks and out of ITU for about 8)
Hello Frazzled! Im not at all surprised you are feeling that way!
Im 67, I my fist acute necrotising pancreatitis in July 21. It came completely out of the blue, I was fit & healthy, had been to the gym, walked 10k & been out for lunch the day before, going to bed without a care in the world!
However, 5 am & I woke feeling nauseous, within 30mins I was on the floor in pain & called 999. All went downhill from there, I was isolated in hospital for 5 moths during which time I had 5 bouts of sepsis, pueudocysts, an external drain, pancreatic fluid on lungs, cdiff, colitis, antibiotic resistance & nausea & psychosis. I completely stopped eating & was given a bypass tube. At the end of the 5 months the consultant said he could do no more & send me home to be with my family. I find it amazing how physio can sign you off as being fit when you can barely walk! When I left hospital I had lost 25 kilos.
I went home to stay with my son & family, I had daily visits from district nurses to clean the external drain. I honestly didn’t think I’d make it despite being very strong willed but being home was everything to me.
One thing my gp helped me with was to try different types of anti sickness meds till one worked. I was on very high doses of 4antibiotics.
Food wise I was surviving on water, hot Ribena & occasionally soup, I just couldn’t stand the taste of ensure, to give my pancreas time to heal. Very gradually I began to feel stronger, weaned off the painkillers & antibiotics & went home. I was lucky to have the help of a dietitian, he encouraged me to drink milk with milkshake mix & added dried milk powder for extra protein, instead of Ensure. I tolerated that well & began to feel stronger. It took another 3 months before I could tolerate food, I started with yogurt, egg custard, anything I could just swallow, I think by now I was afraid to eat. Gaining a little weight was very encouraging too.
It was a very slow process to get back to eating normally, there is no way to rush it, try to keep meals very small, just a mouthful or two & nothing dry as it’s hard to digest. I found getting out for coffee, a short walk & having a routine helped me to return to normality. I would say it took a year to physically recover & another 6 moths for my pancreas to heal.
Now I feel back to normal but find I do tire easier. I have no problems eating, have no pain & since I stopped taking Creon my stomach feels so much better, esp as no wind or spasms!
Sorry this is long, I hope it gives you some hope for your husbands recovery.
Hi there porsche - thank you so very much for taking the time to read my post and reply.
Like you, husbands pancreatitis came out of the blue - he was at work on the Saturday and intubated in an induced coma on the Monday and I suspect this is why the past six months have seemed like a bad dream (nightmare).
I suspect this is also why husband struggles mentally with his recovery as he doesn't remember being so very ill and nearly dying, and therefore doesn't see the huge strides in recovery that he has made as he is constantly comparing what he can do now with what he used to do before he got ill. I have videos and photographs of him in hospital but at the moment he doesn't want to see them so I remind him of how well he is doing.
But he is alive, He isn't in pain and while weak the recovery he has made leads me to feel he will have a good quality of retirement however with quite a few adjustments.
I had the same issue... when I woke up, it was hard to realize I had been so sick. It felt like just yesterday, I could walk across the room with no issues. Waking from the coma, I had trouble adjusting to my new reality. Recovery was hard and exhausting. I struggled and was treated for depression. The doctors explained, being in the hospital for a long time is difficult on patients. There was no shame to needing help to stay positive. Eventually I stopped the depression meds after my recovery progressed.
The last thing he remembers is the pain and calling the ambulance. There is no memory of the five months he was in the ITU in hospital with the exception of the last couple of weeks before he came home spent in the High Dependancy Unit.
Husband has been offered depression meds which he was reluctant to embrace (and to be honest so was I) however on research the one he has been offered is renowned for increasing appetite and therefore weight so he has just started on a very small dose minaly to see if this helps his eating. I am sure these can be stopped as his recovery progresses (🤞)
Husband has been invited for a post ITU and recovery meeting to discuss any issues he has or questions about his stay in ITU. What a fantastic idea and this has spurred him on so get back into the kitchen baking (😝) as he promised the staff there a cake.
I am so sorry about your husband. I’m glad that he is recovering. Your experience has been a nightmare. I understand your feelings about being cheated out of your retirement. I have chronic pancreatitis, and I feel the same way… cheated. I thought my husband and I would be traveling during retirement. However, I can’t make definite plans for tomorrow because I don’t know how I will feel. So I really do get it! My husband has been very supportive. That said, I can tell when he feels frustrated. It’s hard on caretakers. I understand why you feel frazzled. I wish there were support groups for caretakers. May our Lord bless you both, give you peace, comfort, and heal your husband.
Hi Susaberry - that you for taking the time to reply to my post and for your blessings (greatfully received).
I am trying to be supportive and understanding and most of the time I feel I succeed. I do however have my moments and have taken up running (again - I stopped when he got ill) as a means of getting any frustrations out of my system.
I just need to remind myself (occasionally) that the alternative of him not surviving is just to horrible to think about.
Hi SusaBerry, I am curious about your diagnosis process. I was also diagnosed with chronic pan. But mine is still considered “cause unknown”.
Did u need to do extensive Doctor hopping and repeat exams to determine the cause? Understand that treatment varies considerably, depending n the cause of chronic pan. I look forward to your response. Thanks.
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