Wife diagnosed with Acute Pancreatitis

[Proud to be erratic]

Thank you so much for your input we were not aware about scar tissue therapy so we will ask questions next week when we meet the lower GI surgeon.

I too was unaware of scar tissue therapy and it was another forum member (@zippyjojo) who mentioned it mid 2022. It is one of the great things about this forum, you find out all sorts of details that might otherwise never occur to you. I followed up on the possibility because I had 4 hospitalisations during 2022, the 3rd of which was for emergency surgery to deal with my blocked colon; that had become strangled by scar tissue from my Whipple in Feb 2020. Before that original surgery, scar tissue was listed in the pre-op paperwork as one of the many risks from the Whipple's Procedure; but that seemed minor detail back in late 2019 and not only did I fail to ask more about that risk, I assumed it would only be on the surface scar - not deep down inside me. So a lesson learnt there!!

As for the type 3 it was the hospital dietician who said Sue would be type 3c

This is really good to hear, since not everywhere nor everyone is familiar with even the existence of T3c. I was discharged as T1 and neither my GP nor the surgery nurse had heard of it.

and she is writing to our GP with her take on it in case our DN is not familiar with it she also said that if our DN doesn't really understand it that she will get Sue referred to the hospital team as because of Sue having only her small bowel her dietary needs are a little more difficult to keep the diabetes in check .

This is also very good to hear that a door may be opened for Sue to have an open referral to a Hospital Team. Most Diabetes' Nurses in a GP's Surgery only deal with T2 diabetic folks who are not only on just oral meds (and are not insulin dependent), but who also have relatively little complication with their diabetes. What I'm trying to say is that the Nurse in a Surgery is generally NOT someone who has deep expertise in diabetic matters and nor do GPs necessarily have that expertise.

This is in line with NICE Guidance, whereby most of us who are insulin dependent come under hospital based Diabetes Specialist Nurses (DSNs). The potential contradiction for Sue is not only in achieving a good balance of foods in her daily/weekly/monthly dietary regime that suits her stoma, but also in carb counting; for this latter task it is difficult enough to make one's very best estimate of carbs being eaten - but that can be meaningless if those counted carbs are not actually being digested fully and so not all carbs eaten getting fully converted into glucose and then there is excess insulin in the BG - which can lead to lots of hypos.

Reading back through this thread I'm not clear what Sue's actual status is with respect to diabetes: i e. is Sue already on insulin and if so what insulins? Is Sue carb counting or even generally carb aware? I ask, because I can already see potential challenges for Sue with a constant background worry about eating the best things to keep her stoma "quiet" - yet needing to manage her D and prevent longer term problems from diabetes. My sister has had a stoma for the last 4 years from bowel cancer (but she is not diabetic), so I am aware of how much pressure her stoma puts on her.

Do encourage Sue to not underestimate the complexity of managing diabetes while also managing her stoma. The key to getting all of that right may well lie with a competent dietician or nutritionist.

 

[Billy Bob]

I too was unaware of scar tissue therapy and it was another forum member (@zippyjojo) who mentioned it mid 2022. It is one of the great things about this forum, you find out all sorts of details that might otherwise never occur to you. I followed up on the possibility because I had 4 hospitalisations during 2022, the 3rd of which was for emergency surgery to deal with my blocked colon; that had become strangled by scar tissue from my Whipple in Feb 2020. Before that original surgery, scar tissue was listed in the pre-op paperwork as one of the many risks from the Whipple's Procedure; but that seemed minor detail back in late 2019 and not only did I fail to ask more about that risk, I assumed it would only be on the surface scar - not deep down inside me. So a lesson learnt there!!

This is really good to hear, since not everywhere nor everyone is familiar with even the existence of T3c. I was discharged as T1 and neither my GP nor the surgery nurse had heard of it.

This is also very good to hear that a door may be opened for Sue to have an open referral to a Hospital Team. Most Diabetes' Nurses in a GP's Surgery only deal with T2 diabetic folks who are not only on just oral meds (and are not insulin dependent), but who also have relatively little complication with their diabetes. What I'm trying to say is that the Nurse in a Surgery is generally NOT someone who has deep expertise in diabetic matters and nor do GPs necessarily have that expertise.

This is in line with NICE Guidance, whereby most of us who are insulin dependent come under hospital based Diabetes Specialist Nurses (DSNs). The potential contradiction for Sue is not only in achieving a good balance of foods in her daily/weekly/monthly dietary regime that suits her stoma, but also in carb counting; for this latter task it is difficult enough to make one's very best estimate of carbs being eaten - but that can be meaningless if those counted carbs are not actually being digested fully and so not all carbs eaten getting fully converted into glucose and then there is excess insulin in the BG - which can lead to lots of hypos.

Reading back through this thread I'm not clear what Sue's actual status is with respect to diabetes: i e. is Sue already on insulin and if so what insulins? Is Sue carb counting or even generally carb aware? I ask, because I can already see potential challenges for Sue with a constant background worry about eating the best things to keep her stoma "quiet" - yet needing to manage her D and prevent longer term problems from diabetes. My sister has had a stoma for the last 4 years from bowel cancer (but she is not diabetic), so I am aware of how much pressure her stoma puts on her.

Do encourage Sue to not underestimate the complexity of managing diabetes while also managing her stoma. The key to getting all of that right may well lie with a competent dietician or nutritionist.

I myself being type 2 manage mine mostly by low carb diet along side metformin and a weekly jab of Ozempic
Diet wise for Sue I try to keep her carbs lower than most people would but it's more of giving her foods that don't cause blockages without keeping her to a bland boring diet . She is not on any diabetic meds at the moment but it is something we will be keeping a close eye on

 

[Proud to be erratic]

I myself being type 2 manage mine mostly by low carb diet along side metformin and a weekly jab of Ozempic
Diet wise for Sue I try to keep her carbs lower than most people would but it's more of giving her foods that don't cause blockages without keeping her to a bland boring diet . She is not on any diabetic meds at the moment but it is something we will be keeping a close eye on

Thanks for clarifying that @Billy Bob, I had wondered. So while Sue is clearly at risk of diabetes in the future, she is not diabetic at present so she cannot be T3c yet (or any other type).

If (once ) diabetes does develop I suspect that getting the right food to keep Sue's stoma "happy" will take precedence over carb content. If the possible future diabetes also makes her insulin dependent then low carb doesn't 'have' to be a driver.

However if the lower GI team can make a successful reversal of Sue's stoma - then that would be terrific. Fingers crossed for that outcome.

 

[everydayupsanddowns]

Thanks for continuing to keep us updated @Billy Bob

Hope any future surgeries are successful, and that her recovery continues apace.

 

[Billy Bob]

Hi everyone so quite a positive appointment with Sue's surgeon today .
We knew that they were planning to open Sue up for surgery to remove the gallbladder , fistular and try to separate the adhesions on her small bowel to stop anymore blockages, they have said that a reversal on Sue's stoma is also hopefully doable but won't really know until the open her up . They will be putting Sue on the urgent list but nothing is likely until September.

 

[Billy Bob]

So had a phone call from our GP diabetic nurse today and she didn't really have a clue about type 3c so I have asked for Sue to be referred to the diabetes team at the hospital

 

[rebrascora]

Good move. Hope it doesn't take too long to get an appointment.

 

[Billy Bob]

A little update Sue had her diabetic review last week by telephone from our GP's diabetic nurse as Guilford hospital said our GP should be able to handle Sue's case .
The nurse was absolutely clueless once again and kept referring to Sue as type 2 when I said she is type 3c she said I don't know what that is and then she asked why Sue had a full blood screen done again as she only had one in February .
I said have you even read Sue's records to which there was a silence and no reply for quite an interval I then had to tell her Sue's history but she still didn't understand and proceeded to just try and prescribe statins and metformin I had to explain once again that Sue has an ileostomy and can't absorb tablets as they come out whole in her stoma bag and also she is on a low residue diet as fibre will block her up .
I have asked for Sue to be referred to the Hospital again .
Sue's HBA1c is 54 so not massively high

 

[Leadinglights]

A little update Sue had her diabetic review last week by telephone from our GP's diabetic nurse as Guilford hospital said our GP should be able to handle Sue's case .
The nurse was absolutely clueless once again and kept referring to Sue as type 2 when I said she is type 3c she said I don't know what that is and then she asked why Sue had a full blood screen done again as she only had one in February .
I said have you even read Sue's records to which there was a silence and no reply for quite an interval I then had to tell her Sue's history but she still didn't understand and proceeded to just try and prescribe statins and metformin I had to explain once again that Sue has an ileostomy and can't absorb tablets as they come out whole in her stoma bag and also she is on a low residue diet as fibre will block her up .
I have asked for Sue to be referred to the Hospital again .
Sue's HBA1c is 54 so not massively high

OMG you must despair about the lack of knowledge from your GP nurse, you have done right to be asked to be referred back to the hospital, it may be worth making them aware of that issue with the GP nurse.
Under the circumstances an HbA1C of 54 is not too bad and as long as that level can be maintained they should be happy with it.
I'm not sure how old your wife is but there is some thought that there should be more flexibility in what HbA1C is for those who are more mature and people should have a more personalised approach.

 

[Proud to be erratic]

@Billy Bob, you and Sue already have so much to manage without experiences like that. Well-done to you for being so strong and not letting a clueless nurse from your Surgery try to be so stupid. Well done also to Sue with her HbA1c of 54; that is, as you say, NOT massively high and under Sue's circumstances it is terrific.

By chance I know a small amount about the challenges of living with an ileostomy, since my sister has had that dubious pleasure for the last 4+ yrs. I know it needs a lot of daily care and hygiene attention, that it can be even more fickle than diabetes can be and daily food decisions can be just as stressful as for any diabetic person because of the most unpleasant consequences when she gets it wrong. I also know that my sister has struggled to get support from medical staff in general with any (never mind lots of) awareness of how troublesome stomas can be.

I hope the referral back to Guildford is swift for Sue. Stay strong, both of you.

 

[Docb]

@Billy Bob - Does your surgery have a practice manager? If so, I would take your story to them, not as a complaint but to make sure they are aware that somebody in the surgery is being given a job to do which they are not doing very well. It is only by getting feedback that they will look at they way they work, and being human like the rest of us, they are more likely to listen if the feedback is presented in a constructive way.

PS... for the majority of us who get excellent support - it's a good idea to feed that back when the opportunity arises.

 

[rebrascora]

I really don't think this is the nurse's fault. If your wife has been referred back to GP practice by the hospital, then it surely is the hospital's fault. Type 3c is not straight forward and add in the complications of a stoma and the hospital should be providing support in my opinion. The practice nurse should not need to know about Type 3c because in reality it is a more complex situation than she is trained for, so she has been put in an awkward situation in my opinion. Most primary care clinicians have never even heard of Type 3c let alone understand the complexities of it, so it doesn't surprise me that she was unfamiliar with it.
Sadly you really do need to ensure that you gain knowledge and understanding of the situation yourselves in order to push for the right support and sometimes ask the difficult questions of the health care professionals so that they have to think more carefully about the answers they give to you as an individual.

 

[soupdragon]

A little update Sue had her diabetic review last week by telephone from our GP's diabetic nurse as Guilford hospital said our GP should be able to handle Sue's case .
The nurse was absolutely clueless once again and kept referring to Sue as type 2 when I said she is type 3c she said I don't know what that is and then she asked why Sue had a full blood screen done again as she only had one in February .
I said have you even read Sue's records to which there was a silence and no reply for quite an interval I then had to tell her Sue's history but she still didn't understand and proceeded to just try and prescribe statins and metformin I had to explain once again that Sue has an ileostomy and can't absorb tablets as they come out whole in her stoma bag and also she is on a low residue diet as fibre will block her up .
I have asked for Sue to be referred to the Hospital again .
Sue's HBA1c is 54 so not massively high

Good luck with getting Sue a referral back to a team which understands 3c, @Billy Bob

 

[Proud to be erratic]

I really don't think this is the nurse's fault. If your wife has been referred back to GP practice by the hospital, then it surely is the hospital's fault.

But, from what I interpreted from the post, the nurse hadn't recognised the significance that the patient had a stoma and the T3c is a consequence of that problem. Most T3cs have A-N-Other co-morbidity, probably more pressing than the Diabetes and this is, as far as I'm concerned, why we're not all 'just some form of T1'. I happen to think you are being overly generous or kind in this case. In an entirely different thread @MikeyBikey so rightly commented: "At the end of the day I am a patient (person) with multiple conditions not a set of unrelated conditions!"

Type 3c is not straight forward and add in the complications of a stoma and the hospital should be providing support in my opinion.

I can't fault that conclusion.

The practice nurse should not need to know about Type 3c because in reality it is a more complex situation than she is trained for, so she has been put in an awkward situation in my opinion. Most primary care clinicians have never even heard of Type 3c let alone understand the complexities of it, so it doesn't surprise me that she was unfamiliar with it.

Then if that Nurse was unfamiliar with the complexities she should have been alerted by the word Stoma and decided if the patient was within her experience level. The treatment of Sue's T3c condition could actually be 'as if T2', not 'as if T1', but without the Nurse recognising the Stoma complexity then a one-size-fits-all solution is being thoughtlessly applied in trying to impose statins and metformin.

Sadly you really do need to ensure that you gain knowledge and understanding of the situation yourselves in order to push for the right support and sometimes ask the difficult questions of the health care professionals so that they have to think more carefully about the answers they give to you as an individual.

I know that in theory what you say is correct: we each of us need to be more knowledgeable to be able to examine, understand and question, if not challenge - to get the right support. But I have found it is really difficult to get to grips with the machinations of the NHS; the boundaries between Primary and Secondary Care are not always obvious and this is probably very much so in this case. Likewise the needs of most T3cs are equally complex and treatment boundaries less obvious.

I have struggled to get the right care for myself and really had to dig deep to politely get blatantly thoughtless decisions by intelligent people rebutted or reversed. I've also had to waste a lot of my recent life in trying to understand how the NHS sort of works and find the optimum pathways or solutions to allow me to stop wading in treacle and regain movement in a main stream or flow, even though that movement has at times been painfully slow. I'm embarrassed and frustrated by how "noisy" I sometimes have to be to get myself heard.

All of this seems necessary - but is deeply wrong. Finding that balance between constructive observation with gentle questioning vs belligerent contradiction is certainly not easy and I no doubt tend to do the latter. I know that I'm fortunate in having some previous experience with equivalent but very dissimilar difficult quandaries and had to make the best out of a suspect system.

 

[Billy Bob]

Thank you everyone for your input I am going to try and contact the HPD team at Guilford and try to get some more input from them over Sue's dietary and type 3 needs on how we go forward as she is still under a consultant and is on the urgent list for surgery for adhesions , gallbladder removal, fistula removal and while they are in there see if reversing her stoma is viable depending on how much sigmoid is left and the condition of what ever large bowel is left.
Sue has said that if the reversal isn't viable then she is prepared to live with her stoma

 

[Proud to be erratic]

I'm so pleased that Sue is ready to have some acceptance of her stoma circumstances. My sister had been clinging to the reversal proposal for a long while; then a Consultant she particularly respected kindly but firmly told her that if left to him it should NOT be an option, the surgical dangers far exceeded the possible gain. Since that conversation my sister has come to accept that her new world is rather more permanent than she previously hoped. But all of this was, for my sister, amidst her continuous chemotherapy for the original bowel cancer that had spread extensively; so she had other massive distractions.

If my comments about the Surgery Nurse felt both harsh and that I was talking about you and Sue rather than to you both - I apologise. That said I do think that Sue's care should not have been passed back to the GP's Surgery; they are simply far too ill-equipped to help Sue manage this. Frankly Sue's HbA1c of 54 is extraordinary considering all the episodes of problems that she has managed so far; your own background of being T2 will have hugely helped.

Because Sue is not on any diabetes meds she would seem, to my non-medical opinion, to be at little risk of having low BG and right now that is brilliant. Not just because she currently isn't at a particular risk of hypos but in general the fear for those of us who are insulin dependent is that hypos and associated lows are bad news, the older we get. My Endo has very recently most pleasantly but robustly told me to reduce my diligence and that I should try to stay in the 6-9 mmol/L BG range, just to keep me away from hypos; and to be relaxed about my next HbA1c creeping above my current 51. Obviously my medical status has little comparison with Sue's - yet the idea of being that bit higher is apparently far less damaging on our bodies than we've been conditioned to believe until now.

Good luck with reaching out to HPD (HPB?) and getting them involved again.

 

[Billy Bob]

I'm so pleased that Sue is ready to have some acceptance of her stoma circumstances. My sister had been clinging to the reversal proposal for a long while; then a Consultant she particularly respected kindly but firmly told her that if left to him it should NOT be an option, the surgical dangers far exceeded the possible gain. Since that conversation my sister has come to accept that her new world is rather more permanent than she previously hoped. But all of this was, for my sister, amidst her continuous chemotherapy for the original bowel cancer that had spread extensively; so she had other massive distractions.

If my comments about the Surgery Nurse felt both harsh and that I was talking about you and Sue rather than to you both - I apologise. That said I do think that Sue's care should not have been passed back to the GP's Surgery; they are simply far too ill-equipped to help Sue manage this. Frankly Sue's HbA1c of 54 is extraordinary considering all the episodes of problems that she has managed so far; your own background of being T2 will have hugely helped.

Because Sue is not on any diabetes meds she would seem, to my non-medical opinion, to be at little risk of having low BG and right now that is brilliant. Not just because she currently isn't at a particular risk of hypos but in general the fear for those of us who are insulin dependent is that hypos and associated lows are bad news, the older we get. My Endo has very recently most pleasantly but robustly told me to reduce my diligence and that I should try to stay in the 6-9 mmol/L BG range, just to keep me away from hypos; and to be relaxed about my next HbA1c creeping above my current 51. Obviously my medical status has little comparison with Sue's - yet the idea of being that bit higher is apparently far less damaging on our bodies than we've been conditioned to believe until now.

Good luck with reaching out to HPD (HPB?) and getting them involved again.

Thank you so much it's always good to get someone else's perspective and we aren't overly worried about Sue's bg levels I was a little frustrated with the GP nurse and also that Guilford had passed Sue to our GP for her diabetes .
I think we are very on edge about Sue having the operation but know that it is a must but in truth we think that keeping the stoma will probably be for the best , better she can go in the bag rather than constantly rushing to the toilet at least Sue will have freedom of sorts , the most important part of the operation is to remove the fistula which is restricting her small bowel and causing blockages.
Her surgeon said that if Sue wasn't having so many blockages and no fistula he would leave her well alone and encourage her to live with the stoma but was also in agreement that if a reversal was viable when he could see more clearly once inside Sue he would do it , so we both have mixed emotions ?

 

[Billy Bob]

Little update Sue has her surgery date now confirmed 13th November nervously exited but at least we can start to look forward

 

[rebrascora]

Wishing you both lots of luck for her surgery and really hope everything goes smoothly.

PS. Haven't seen any of your culinary creations on the Food Ideas with Photos thread recently?? Hope you are still managing to produce those delicious healthy meals.

 

[Inka]

Good luck. I hope everything goes really well for Sue. Wishing you both the best.