# Wife diagnosed with Acute Pancreatitis



## Billy Bob (Jan 3, 2022)

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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## Prolaf (Jan 3, 2022)

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 ?


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.


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## soupdragon (Jan 4, 2022)

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 ?


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.


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## Billy Bob (Jan 4, 2022)

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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## Prolaf (Jan 4, 2022)

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 .


Looking forward to the day Sue can join us on this forum!


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## soupdragon (Jan 5, 2022)

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 .


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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## Billy Bob (Mar 4, 2022)

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.


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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## soupdragon (Mar 4, 2022)

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.


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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## Billy Bob (Mar 6, 2022)

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.


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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## soupdragon (Mar 6, 2022)

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


Sending love and best wishes to both of you.


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## everydayupsanddowns (Mar 6, 2022)

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.


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## Anxious 63 (Mar 10, 2022)

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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## Billy Bob (Mar 11, 2022)

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


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


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## EmmaL76 (Mar 11, 2022)

Oh @Billy Bob in thinking of you and your wife right now. Sending love and prayers for you both


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## soupdragon (Mar 11, 2022)

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


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.


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## Billy Bob (May 7, 2022)

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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## Inka (May 7, 2022)

That’s fantastic news @Billy Bob Wishing her well in her recovery. You must both be delighted that she’s finally home.


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## soupdragon (May 7, 2022)

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


Delighted to hear that Sue is home @Billy Bob . Wishing you both all the best.


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## Pumper_Sue (May 7, 2022)

Fantastic news so pleased to hear it.


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## everydayupsanddowns (May 8, 2022)

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



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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## Billy Bob (May 10, 2022)

everydayupsanddowns said:


> 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?


Thank you and everyone else for their input and kindness
So we had a visit from the OT on Friday  she was very happy with the home layout gave Sue a commode for the bedroom so as she hasn't got to cope with the stairs during the night 
I have fitted additional hand rails to the stairs and front / rear house entrances also brought a rotating seat for the shower 
Physio came yesterday and gave Sue some exercises to do .
Still working on diet for the stoma but getting there slowly , Stoma nurse is coming on Thursday .
So all going in the right direction and her blood sugars are still showing in the normal range


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## Billy Bob (May 12, 2022)

A little update 
Stoma nurse visited today and gave us both some really useful information 
Diet wise Sue has got to eat high calorie high carb low fibre , chew her food more to help her body to absorb the nutrition and digest better 
almost opposite to my diet so a lot of meal tweaking ahead , also Sue was told not to drink plain water to put juice in it as plain water is just making her stool to liquid


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## MikeyBikey (May 13, 2022)

I started reading from the beginning as a new post to me. So glad things are now in a better place. 

Thought this might be useful as a friend had pancreatis some years ago. 









						Acute pancreatitis - Guts UK
					






					gutscharity.org.uk


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## soupdragon (Jun 16, 2022)

Hi @Billy Bob 
I wondered how Sue (and you) are getting on.
Hoping that she is enjoying being home and that she's making progress, although (if she is anything like me) it probably seems very slow at times.


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## Billy Bob (Jun 16, 2022)

Hi @soupdragon thank you for asking 
Sue has been doing really well ,she is much more mobile now getting stronger everyday 
Been signed off by the physio now 
We had a follow up appointment at Guilford on Monday they were amazed at how Sue has progressed since being discharged 
So we asked a few questions and got some answers for going forward 
Sue will need her Gall bladder removed at some point or risk getting problems again 
We spoke briefly about reversing the stoma but we will need to speak with a lower Gi consultant about the risk, pro's and con's
A full pancreatic scan will be done in about 6 months so we will know more then of what damage there is .
They have asked our GP to do a full blood screening including HBA1c as Sue may well turn type 3 
The hardest thing we are finding is getting Sue's diet right for the stoma but overall life is feeling good right now


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## soupdragon (Jun 17, 2022)

So glad to hear that @Billy Bob and I hope that Sue's recovery continues well.


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## Billy Bob (Nov 12, 2022)

Sue is back in Guilford hospital since the 28/10/22 
she had a blockage in her small bowel and a infection collection in her back which has a fistula connecting between the infection and the small bowel , she is well in herself but there maybe another surgery needed once we know if the fistula dries out , she has a large drain for the infection and nil by mouth is being fed by TPN .
We are both struggling a bit emotionally as we also lost our daughter on the 31st


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## Inka (Nov 12, 2022)

Oh, @Billy Bob - what a lot you’ve gone through! I’m so sorry to hear about the loss of your daughter. No wonder you’re both struggling. I hope you have good support around you, both from family and friends, and professional support too if needed. No words are enough at a time like this.

I’m sorry to hear Sue might need another operation. I hope she’s ok and any treatment goes smoothly. It must be very hard, especially now. 

Sending you and your family my best wishes.


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## rebrascora (Nov 12, 2022)

I am just reading this thread for the first time. It is a bit of an emotional roller coaster just reading it, so I can't begin to imagine what it has been like to live through it and then for you to lose your daughter..... How absolutely heart breaking. I am so very sorry! You must be beside yourself with worry for your wife and grief for your daughter.
It seems very trivial but sending virtual (((HUGS))) your way as that is the best I can offer. Please do keep coming to the forum and offloading your worries as well as updating us. I believe @eggyg has had problems with intestinal blockages as a result of her pancreatic surgery, but is managing pretty well with it albeit with a restricted diet, so hopefully they will get your Sue fixed up again and the infection healed. 
Sending you and her love and very best wishes for a speedy recovery.


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## Billy Bob (Nov 12, 2022)

Thank you so much everyone for your support just getting it out there helps


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## soupdragon (Nov 12, 2022)

So sorry to hear the news about both Sue and your daughter @Billy Bob . Sending love and best wishes to both of you. 
I also ended up back in Guildford last year with a small bowel obstruction caused by adhesions from the pancreatitis. After a couple of tries clearing it I had surgery and have had no recurrence so far. It must be so frustrating that this has happened for Sue but I'm glad to hear that she's back in Guildford where they are so experienced in dealing with pancreatitis.
I hope that they manage to resolve things for Sue and the infection starts to clear quickly.
Please keep us updated. I'll be thinking of you both.


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## Billy Bob (Nov 12, 2022)

soupdragon said:


> So sorry to hear the news about both Sue and your daughter @Billy Bob . Sending love and best wishes to both of you.
> I also ended up back in Guildford last year with a small bowel obstruction caused by adhesions from the pancreatitis. After a couple of tries clearing it I had surgery and have had no recurrence so far. It must be so frustrating that this has happened for Sue but I'm glad to hear that she's back in Guildford where they are so experienced in dealing with pancreatitis.
> I hope that they manage to resolve things for Sue and the infection starts to clear quickly.
> Please keep us updated. I'll be thinking of you both.


Thank you for your reply 
So Sue’s blockage has cleared as her stoma is producing output but is nil by mouth to try and rest her stomach and hopefully the fistula that is communicating with her bowel will dry up , all her blood markers are ok so it is a waiting game


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## soupdragon (Nov 12, 2022)

Glad to hear that @Billy Bob and hope that things continue to improve.


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## everydayupsanddowns (Nov 13, 2022)

Sincere condolences for your loss @Billy Bob


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## Billy Bob (Nov 25, 2022)

Just a little update on Sue 
No real change infection still draining  Drs are saying she systemically well still being fed by TPN overnight  and nil by mouth , we have been getting out of the hospital everyday and returning in the evening where they are still allowing me to stay with her.
We have our daughters funeral this afternoon so we can bring closure to that and concentrate on Sue getting better


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## rebrascora (Nov 25, 2022)

I can't even begin to imagine what you are going through but it sounds like Sue is at least stable and so good that you can get her out during the day and stay with her overnight. I hope the funeral and particularly the friends and relatives who attend, help to give you some comfort and support through what will, no doubt, be a very difficult event. 
Sending heartfelt (((HUGS))) to you both and wishing Sue a sustained recovery.


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## soupdragon (Nov 25, 2022)

Billy Bob said:


> Just a little update on Sue
> No real change infection still draining  Drs are saying she systemically well still being fed by TPN overnight  and nil by mouth , we have been getting out of the hospital everyday and returning in the evening where they are still allowing me to stay with her.
> We have our daughters funeral this afternoon so we can bring closure to that and concentrate on Sue getting better


Good to hear that at least things seem stable and that Sue is able to escape from the hospital during the day.
I'll be thinking of you both this afternoon.


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## Jenny65 (Nov 25, 2022)

Ive just seen this thread for the first time and just wanted to wish you and Sue well,  I hope things improve and I am so sorry for the loss of your daughter x


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## Billy Bob (Nov 25, 2022)

Thank you once again everyone for your support and good wishes we have just arrived back to Guildford hospital to get Sue plugged in for the night the nursing staff have been great once again going above and beyond what they need to even checked my blood pressure lol which was fine 
Funeral went well and we had a good few hours with family and friends celebrating our daughters life 
So now onwards and upwards to get Sue back home 
Xxx to you all


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## Billy Bob (Dec 2, 2022)

Little update
So they have pulled Sue’s drain and are now saying that another operation may not be on the cards


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## everydayupsanddowns (Dec 2, 2022)

Thanks for the update @Billy Bob 

Glad the drain is out at last!


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## rebrascora (Dec 2, 2022)

So pleased to hear that. Hope she can come home soon.


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## soupdragon (Dec 3, 2022)

Good to hear that @Billybob 
Hoping Sue keeps improving and is home with you soon.


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## Billy Bob (Dec 4, 2022)

Thank you everyone
Hopefully we'll get more news tomorrow as to when Sue can start on a liquid diet


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## Billy Bob (Dec 5, 2022)

Started on soup today and free fluids


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## Inka (Dec 6, 2022)

Sounds good @Billy Bob


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## Billy Bob (Dec 22, 2022)

So finally got Sue back home on Monday 
It has been a bit of a rollercoaster over the last 2 weeks, the doctors were ready to discharge Sue on the 14th while we were waiting for the paperwork and meds Sue became ill again with another ileostomy blockage , luckily we hadn't left the hospital 
The blockage was cleared again by the following evening and Sue was started back on soft foods and her stoma output has been  good ever since so they were happy to release her on Monday we will hopefully get an update in January as to if they need to operate as they think there is a narrowing in her small bowel ?
Any way we are home for Christmas and this time last year we were in a very different place so onwards and upwards.
Thank you everyone for your support and kind words MERRY CHRISTMAS to you all XXX


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## rebrascora (Dec 22, 2022)

So pleased for you both and hope everything goes smoothly over the festive season and very best wishes to you both for 2023.


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## Inka (Dec 22, 2022)

A Merry Christmas to both @Billy Bob I’m so glad you and Sue will be able to spend Christmas at home. I hope you have a lovely, relaxing time together - you both deserve it.


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## EmmaL76 (Dec 22, 2022)

Wishing you both the best possible Christmas. Goodness knows you deserve it xx


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## soupdragon (Dec 24, 2022)

Delighted to hear that @Billy Bob .
Wishing you both a Merry Christmas and hoping that Sue's recovery continues well.


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