Wife diagnosed with Acute Pancreatitis

B

Billy Bob

Well-Known Member
Relationship to Diabetes
Type 2
These posts were split from: https://forum.diabetes.org.uk/boards/threads/another-newbie.97290/page-2

Hi everyone I have just come across this thread
My wife has now been in hospital since mid November with acute pancreatitis caused by gal stones ? and currently still in ICU she has 3 drains in one is in what the surgeons described as the head of the pancreas one in the tail and a superficial one in the abdomen
She has been nil by mouth for the whole time in there and has had numerous infections which keep giving her sepsis showers , her blood sugars have been fairly good all the way through and she is being fed intravenously also on 3 different antibiotics as well as strong pain meds.
By reading this thread it has given me some sort of hope of getting her back home where she belongs
I just need to try and get my head round how life changing this will be for her ?
 
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Billy Bob said:
Hi everyone I have just come across this thread
My wife has now been in hospital since mid November with acute pancreatitis caused by gal stones ? and currently still in ICU she has 3 drains in one is in what the surgeons described as the head of the pancreas one in the tail and a superficial one in the abdomen
She has been nil by mouth for the whole time in there and has had numerous infections which keep giving her sepsis showers , her blood sugars have been fairly good all the way through and she is being fed intravenously also on 3 different antibiotics as well as strong pain meds.
By reading this thread it has given me some sort of hope of getting her back home where she belongs
I just need to try and get my head round how life changing this will be for her ?
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Hi @Billy Bob,
Hope this thread can provide a little comfort. By comparison I was very lucky. I had acute pancreatitis from gall stones about 7 years ago and spent a few weeks in hospital. I was lucky enough not to need ICU but did have someone go into my pancreas and fish out the gall stones. Sounds like your good lady has been really unlucky, but getting very good care. The hospital sent me home, then took my gall bladder out a couple of weeks later. About a month after that I developed a pseudocyst - sounds like they're being really proactive and ensuring one of those doesn't get chance to form - when I went back into hospital with the cysts I too was put on IV antibiotics but couldn't be transferred for 2 weeks to a specialist unit because the ward I was on had norovirus on it so the specialist's wouldn't let me travel. Ultimately, that was good news as the painkillers and the antibiotics did a sterling job. When I did eventually get to the specialists over in Newcastle the infection was gone, but the cyst was still there - so they decided on a watch an wait. After a couple more infections and scares it eventually drained itself into my bowel. It's left me with about 1/3 of a pancreas and its taken about 7 years for that to eventually show signs of packing up.

The people responding on this thread have been amazing and, like your wife, have suffered much more than I did. From my experience nothing happens particularly quickly where the pancreas is concerned (took me about 12 months to get back to normal (ish)) but unless they decide to take the pancreas away hopefully she will also get back to some kind of normal...and even if they do there seem to be plenty of people managing with their meds to maintain a normal life.

I'll keep my fingers crossed and hope that she improves quickly for both your sakes. Bless her, the pain from pancreatitis is excruciating.
 
Billy Bob said:
Hi everyone I have just come across this thread
My wife has now been in hospital since mid November with acute pancreatitis caused by gal stones ? and currently still in ICU she has 3 drains in one is in what the surgeons described as the head of the pancreas one in the tail and a superficial one in the abdomen
She has been nil by mouth for the whole time in there and has had numerous infections which keep giving her sepsis showers , her blood sugars have been fairly good all the way through and she is being fed intravenously also on 3 different antibiotics as well as strong pain meds.
By reading this thread it has given me some sort of hope of getting her back home where she belongs
I just need to try and get my head round how life changing this will be for her ?
Click to expand...
Hi @Billy Bob
So sorry to hear about what is happening to your wife.

I'm now 3 years on from the start of severe acute necrotising pancreatitis.
The start of my time in hospital sounds similar to that of your wife, with nearly 2 months in ICU. While I don't remember the start of my time in there (ventilated and sedated) I know that I was treated with lots of antibiotics due to infection.

As one of the sisters said to me - pancreatitis is a horrible disease. I expect that you've been told about the pancreatitis roller coaster - lots of ups and downs but hopefully generally heading in the right direction.
It can also be very frustrating (both for the patient and family) because at times there is a lot of waiting as it tends to be safer not to intervene unless it is absolutely necessary.

Everyone's experience with pancreatitis seems to be very different.
I was unlucky to have quite a few complications and lots more antibiotics (I remember 3 at once at least twice after ICU) and it took me 6 months in total to leave hospital.
I have very little pancreas left so that caused diabetes (Type 3c) and also means that I have to take digestive enzymes (Creon) with meals. The diabetes has meant a pretty steep learning curve but it does get easier.
It has been a long recovery process but now I'm back at work (part time now, had always worked full time before) and managing to enjoy many of the things I did before. The recovery period also gave me the opportunity to acquire some new hobbies! A lot of that recovery was to rebuild the strength due to the loss of muscle mass in ICU. When I first went to the ward I was shocked by how exhausted I was. Having a wash would exhaust me for the day.

I hope that your wife starts to improve soon.
I know it was really tough for my family and friends so I do hope that you have support as well.

Best wishes to both of you.
 
Thank you @Prolaf and @soupdragon
It does give me hope that My wife Sue will get through this she is a strong willed person and tries to keep positive about everything as she has supported me through my type 2 journey as have I through any illness she's had .
The most difficult thing for both of us has been being apart for the first time in our 43 years together , I feel lucky to have been able to visit everyday as just physical touch helps her so much .
 
Billy Bob said:
Thank you @Prolaf and @soupdragon
It does give me hope that My wife Sue will get through this she is a strong willed person and tries to keep positive about everything as she has supported me through my type 2 journey as have I through any illness she's had .
The most difficult thing for both of us has been being apart for the first time in our 43 years together , I feel lucky to have been able to visit everyday as just physical touch helps her so much .
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Looking forward to the day Sue can join us on this forum!
 
Billy Bob said:
Thank you @Prolaf and @soupdragon
It does give me hope that My wife Sue will get through this she is a strong willed person and tries to keep positive about everything as she has supported me through my type 2 journey as have I through any illness she's had .
The most difficult thing for both of us has been being apart for the first time in our 43 years together , I feel lucky to have been able to visit everyday as just physical touch helps her so much .
Click to expand...
I'm so pleased that you've been able to visit. I was worried that that might not have been possible.
For me, just knowing that someone was there was a huge comfort, even if I couldn't respond at the time.
 
soupdragon said:
I'm so pleased that you've been able to visit. I was worried that that might not have been possible.
For me, just knowing that someone was there was a huge comfort, even if I couldn't respond at the time.
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So Sue got transferred to Guilford pancreatic ward this week where she is currently sedated in ICU after having an arterial bleed embolised . She still has 2 drains in which one burst about 2 weeks ago and she has got worse since.
She didn't recognise me over the last few days before being transferred so I'm hoping that when she is brought round from the sedation that she isn't to distressed as there is no visiting allowed in Guilford hospital at all and she won't know where she is.
I'm struggling even more so mentally now as I have never not seen her for more than 24 hours in the 43 years we've been together , I'm pleased Sue is in the right place for treatment but it's the not being able to see her or comfort her and trying to keep the dark thoughts out of my head.
 
Billy Bob said:
So Sue got transferred to Guilford pancreatic ward this week where she is currently sedated in ICU after having an arterial bleed embolised . She still has 2 drains in which one burst about 2 weeks ago and she has got worse since.
She didn't recognise me over the last few days before being transferred so I'm hoping that when she is brought round from the sedation that she isn't to distressed as there is no visiting allowed in Guilford hospital at all and she won't know where she is.
I'm struggling even more so mentally now as I have never not seen her for more than 24 hours in the 43 years we've been together , I'm pleased Sue is in the right place for treatment but it's the not being able to see her or comfort her and trying to keep the dark thoughts out of my head.
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So sorry to hear that @Billy Bob . I also had a arterial bleed (splenic artery for me) which was embolised. It gave my family and I quite a scare.
It's great news in terms of the treatment that she's been transferred to Guildford. It's where I was treated. As you'll know, it's a specialist pancreatic centre so they are used to treating the more complicated cases.
I'm sorry you're not able to visit. That must be so difficult. I hope it helps to know that the ICU staff at RSCH are wonderful and the nurses incredibly caring. They were so kind and reassuring to me when I was coming out of sedation and very confused.
ICU steps gives some useful information for relatives of those in ICU and I'm sure the ICU staff will want to support you as well as your wife.
My very best wishes to you both and hoping that things start moving in the right direction soon.
 
soupdragon said:
So sorry to hear that @Billy Bob . I also had a arterial bleed (splenic artery for me) which was embolised. It gave my family and I quite a scare.
It's great news in terms of the treatment that she's been transferred to Guildford. It's where I was treated. As you'll know, it's a specialist pancreatic centre so they are used to treating the more complicated cases.
I'm sorry you're not able to visit. That must be so difficult. I hope it helps to know that the ICU staff at RSCH are wonderful and the nurses incredibly caring. They were so kind and reassuring to me when I was coming out of sedation and very confused.
ICU steps gives some useful information for relatives of those in ICU and I'm sure the ICU staff will want to support you as well as your wife.
My very best wishes to you both and hoping that things start moving in the right direction soon.
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Thank you for your kind reply
Last night they done an emergency surgery and removed her colon and fitted a stoma , Sue is still very sick all I can do is pray for her
 
Billy Bob said:
Thank you for your kind reply
Last night they done an emergency surgery and removed her colon and fitted a stoma , Sue is still very sick all I can do is pray for her
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Sending love and best wishes to both of you.
 
So sorry to hear about your wife’s illness @Billy Bob

Must be so very worrying for you. Good to know that she is in a specialist centre and receiving the best care.

It can be so difficult when someone so close to you is so ill.

Be kind to yourself.
 
Very sorry to hear about your wife @Billy Bob i myself just spent 3 months in hospital with acute necrotizing pancreatitis , it sounds your missus has a severe attack i hope she recovers and gets as well as she can
 
Anxious 63 said:
Very sorry to hear about your wife @Billy Bob i myself just spent 3 months in hospital with acute necrotizing pancreatitis , it sounds your missus has a severe attack i hope she recovers and gets as well as she can
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Hi thank you for your kind words
Sue is still in ICU now off of the ventilator and breathing without any additional oxygen , infection markers are still much the same , BP is stable along with no temperature spikes , still being fed by TPN although they tried feeding through the NG tube as well but she didn't do well with it so maybe to early for that ?
Still very confused and not really making any sense of anything so I still haven't been able to telephone her , I'm taking positives from this all
 
Billy Bob said:
Hi thank you for your kind words
Sue is still in ICU now off of the ventilator and breathing without any additional oxygen , infection markers are still much the same , BP is stable along with no temperature spikes , still being fed by TPN although they tried feeding through the NG tube as well but she didn't do well with it so maybe to early for that ?
Still very confused and not really making any sense of anything so I still haven't been able to telephone her , I'm taking positives from this all
Click to expand...
So pleased to hear this @Billy Bob . It's great that Sue is managing without the ventilator.
I was fed by an NJ tube (going down into the small intestine) for a long time (3 months after I left hospital as well) but with Sue's other issues that may not be possible for her. They do try very hard to keep the nutrition at the right levels.
My temperature spikes continued for quite a long time after I left ICU but eventually settled down.
I was very confused for quite a while after coming off the ventilator (even when I thought I was making perfect sense!) so I think that's to be expected.
Hoping that this is the start of her heading in the right direction.
 
That’s fantastic news @Billy Bob Wishing her well in her recovery. You must both be delighted that she’s finally home.
 
Billy Bob said:
Sue came home from hospital Thursday evening after 7 months
So great to have her home again now just got to build up her muscles and experiment with her diet to get the stoma output right
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Delighted to hear that Sue is home @Billy Bob . Wishing you both all the best.
 
Fantastic news so pleased to hear it.
 
Billy Bob said:
Sue came home from hospital Thursday evening after 7 months
So great to have her home again now just got to build up her muscles and experiment with her diet to get the stoma output right
Click to expand...

Oh what fantastic news @Billy Bob! Thanks for keeping us updated 🙂

So pleased for you both.

Do you know if you might be able to access any physio support or perhaps ‘social prescribing’ access to assist in her recovery?
 
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