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New ostomate looking to relate to someone with a similar experience with colitis.

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Posted: Sun May 21, 2017 9:47 am

Hello,

 

I'm not sure if this is the correct section for this post, which may be more of a rant than a friendly post, so please let me know if it needs to be moved or removed. Thanks.

The following is my experience, or lack thereof, with colitis.

I'm currently nine weeks post-ileostomy surgery. It was emergency surgery for acute severe ulcerative colitis. I started university studying biomedical science (of all things) and at the same time developed the symptoms of colitis rapidly over the course of about three weeks. I obviously had bloody diarhoea, however it wasn't an alarming amount. It was the fatigue that alarmed me. I would struggle to make it to my next lecture during the ten minute break because I would have to sit down to catch my breath multiple times along the way.

On the 10th of March a gastroenterologist phoned me directly at 7:30am whilst I was getting ready to leave for uni. I was originally booked in to see another gastro on the 22nd of March, which I now realise I would have most likely died first. He basically told me to forget about uni and the practical I was booked in for and go to hospital straight away. He said that my inflammatory marker on one of the multiple blood tests I had done for my GP over the previous two weeks was too high, and that he needed to perform a sigmoidoscopy as soon as he could. His phrase "pack an overnight bag" made me and my parents assume that I'd be there for a night or two, pumped full of antibiotics, and sent on my way. He told me that afternoon that I had a case of acute, severe ulcerative colitis, a disease that neither me nor my parents had ever heard of. We had hope that the steroids would fix me, as we were told that 7/10 people respond to it, and of the 3/10 that don't, 2/3 of them respond to Infliximab.

I spent the next four days being pumped full of hydrocortisone, blood, iron, and platelettes (I was very anaemic), but the steroids did nothing, which was proven by another sigmoidoscopy. I was then given a dose of Infliximab, which my gastroenterologist told me usually takes around two days before it starts affecting me. And that's just what I thought happened; two days later, I felt fantastic, but it turns out that it was just the blood and fluids I had been given over the days prior that were giving me such a boost. I found this out on the Friday morning (17th of March) when the surgeon came in and noticed my stomach was somewhat distended. I had some X-rays done and it turned out that my colon had dilated to 8cm, and a healthy colon was about 3.5cm, though I wasn't told the severity of my colitis at the time, and I was sent for another sigmoidoscopy. My parents and I were kept waiting outside the room where the sigmoidoscopy was to take place for about 15 minutes, and it was the longest and scariest 15 minutes of my life. As I said, at this point I had no idea about how ill I was and as I was sent down for the sigmoidoscopy I was told by the surgeon that it would basically determine how bad the colitis is and whether or not it needed to be operated on. 

I was told at just after 2:00pm that I was to be operated on that day, and that surgery would start at 4:00pm. The surgeon said I had toxic megacolon, and waiting until the day after would be dangerous as I was at a high risk of perforation, which I wouldn't even feel due to the amount of blood and steroids I had in my system. I had received a brief visit from a stoma nurse earlier in the week, but both my parents and I didn't really want to talk to them as we were so hopeful that the Infliximab would work.

After surgery, I felt quite literally gutted. Both physically and emotionally, the ten days I spend in hospital after my operation were the toughest days I've ever experienced. I had gone from being a fit and healthy lad, exercising almost daily, eating very healthily and starting my uni studies, to taking minutes to simply get out of bed, at which point I would feel dizzy and have to sit down anyway. Reading people's stories online didn't help either. It seemed as though everyone had struggled with colitis for months or years before making an informed decision to have surgery. I never struggled with colitis in the same way. I experienced it for three weeks and assumed it was a mere gut infection.

The surgeon, though extremely good, very friendly, and always informative about my concerns, seems to discuss things from quite a professional point of view rather than getting to know his patients.

The haematologist was, again, very friendly but also never bothered to really talk to me about my situation.

The nurses and stoma nurses were, of course, fantastic (aside from one of the stoma nurses who was rather hostile all of the time...), but I rarely saw the same person twice.

Other than my parents, the gastroenterologist was the only person who I can confidently say bothered to sit down and have a personal chat with me and my parents about me, my situation, and how I was coping with it both physically and emotionally.

I apologise for such a long story, but as I said at the beginning, this is somewhat of a rant about my experience.

I quite enjoyed my hospital stay, as weird as it may seem. Being a biomedical science student, I have always wanted to study medicine so I was rather comfortable in hospital as I knew that I needed to be there if I was to get any healthier. Having a button to call a nurse anytime I needed help or was in pain was a great comfort, and the constant visits from the gastroenterologist was, again, a great comfort.

I'm now just over nine weeks post-op. Overall I have recovered and learnt to accept my ileostomy much faster than I expected, but mentally I have struggled, especially recently. I was (and still am) overwhelmed with how fast it happened, how close I came to dying without even knowing it, and how dramatically my life has changed, but I often feel alone. I have been seeing a psychologist regularly since leaving hospital and he has helped me accept my situation and develop strategies to cope, but he doesn't know much about any of what I've been through, not that I expect him to know. My parents have been amazing, but like me they are completely new to colitis and ileostomies. None of my friends had heard of it and can often be a bit uncomfortable talking about it, which I suspect is because they don't want to offend me (not that I care if they have a laugh about it. I try to).

 

After such a long and draining story, my point is finally this: though I've had so many people around me over the last few months treating me and supporting me, I feel alone very often. I try to read people's stories online, but the majority of people seem to have made the choice, or suffered with colitis for years, so having an ileostomy for them is a god send. I feel the opposite. Because I had the symptoms for such a short amount of time, it has taken a good life away from me. I have had to defer uni until mid-July, I can't exercise like I used to, I have to be wary of what I'm eating, and I wasn't even at uni long enough to meet some new friends that I can relate to about what I want to study. I would like to know if there is anyone here who has had a similar experience to me, whereby they had rapid and severe colitis and was given very little time to understand what it was and the effects of a colectomy and ileostomy, particularly when they were a teenager. I really feel like I've mentally recovered as much I can on my own as I'm beginning to feel as though I've taking steps backwards recently in regards to how I'm coping with it all. 

 

If you managed to read through all of that, thank you for your time. Of course, any input is welcome and greatly appreciated. I have never posted on here before, so please let me know if this is in the wrong place.

 

Thank you, 

Hamish

Posted: Sun May 21, 2017 3:48 pm

Hi Hamish,

You've had quite a time. I don't have or ever had UC but I would like you to know all sounds quite normal about trying to adapt to what you have gone through. It's great you had a professional to help as well as loving supportive parents. Feeling alone is something many of us feel. I suppose it would be easier if we did meet with someone face to face that has a similar story but it isn't always reality unless you go to a group meeting. I'm sure you can do some internet research or even ask at the hospital where you were to find one in your local area.

Welcome to MAO, I hope you find some answers and meet some folks who truly understand.

Posted: Tue May 23, 2017 4:03 pm

Hamish,

I had varying degrees of UC.  I am 57 now and 2 years ago I had a flare up that made me very sick and I lost 30 lbs from 215 to 185 being 5'10". In February, I started feeling sick again with bloating and diarrhea.  I had my GI do a sigmoidoscopy and he told me my UC was back again, but that I should probably admit myself to my local hospital.  They took me in and did an xray and realized I had a megacolong 12 cm in diameter in my transverse colon with a blockage in my descending colon.  Well 3 days later of steroids and antibiotics to no avail, I was prepped for surgery with excrutiating pain in my lower right quadrant (i thought my colon had burst).  No amount of pain killer helped until they gave me morphine.  That next morning, I had an emergency sub-total colectomy (rull removal of my colon while keeping my rectum) and an Ileostomy.  Weeks later I got the Operative Report and the doctor had dictated that "the patients condition continued to deteriorate".  My colon burst during the operation and up to 1.5 liters of bowel contents had spilled into  my peritoneal cavity.  I was pretty close to passing.

Its now 12 weeks post op and I am finally getting my strength back, I lost 40 lbs from 225 to 185.  I look great, a bit emaciated, but very weak in comparison.  I can't believe how weak I got in those days since my operation.  My delimma now is should I and when, get a take down operation.

Eric

Posted: Tue May 23, 2017 5:08 pm

Hi hamish

my journey was similar to yours, very fast but not quite so speedy! I was only sick for around 6 mths with UC after having never really been sick before in my life. Lost 3.5 stones down to 6 stones due to constant blood loss. No medication they offered me ever made the slightest difference. My only difference being I developed it at 39 & am certain it was entirely stress related. I think it would be a much more difficult experience to go through when younger, but you will recover, with support.

i truly believe the experience will make you a better, more empathic person. I'm a clinical psychologist in the NHS (partly how I got so sick with stress!) & I feel I'm a better psychologist now, maybe because I care slightly less about work!

 

In hindsight, I should have demanded an illeostomy after only a couple of months of being that sick, but I was stubborn & convinced that something would work, eventually - instead I lost 6 mths of my life & that of my young kids.But I'd never even heard of it before & am still in shock, a year later, at having been told I had around 12 hours to live without emergency surgery to remove my entire colon.

 

 

Posted: Tue May 23, 2017 5:13 pm

Sorry the message cut off!

so it can happen for some of us, & the shock of having only been ill for such a short time seems surreal, but I often speak to those who had been sick for 10 to 30 years with chrons or colitis & can only be grateful that I didn't have that journey & that it didn't take over my entire life & change me as a person. I'm just very grateful to still be here!

good luck, you are doing fantastically well & it's very early days

jenni x

Posted: Tue May 23, 2017 5:40 pm

Hi Hamish

 

So sorry to hear about your traumatic experience - I can't believe it went so bad in such a short time.

However, look at it this  way - you missed five years of worrying about having an "accident" in public (which I did, dramatically, in the middle of a department store), five years of not being able to go to a movie or a sports event, five years of checking every restaurant for the loos before I even sat down, five years of not being able to go on a car trip of more than about an hour, and having an "accident" on a couple of them, five years of being on huge doses of Prednisone, which gave me osteoporosis and cataracts, five years of not being able to leave my house because my diarrhea was so bad, five years of anemia, and having to have blood transfusions, five years of almost knocking my co-workers down rushing to the office loo . . . I could go on and on.

I was absolutely sick and miserable. My gastro doc tried everything, but nothing worked. So finally, after the aforementioned department store horror, I agreed to have surgery to remove my entire colon from appendix to anus. Best thing I ever did. Now I can go on vacation, go to movies, not have "accidents" in bed, and I feel so much better!

So hang in there, you'll get used to it too.

Sandi

Posted: Tue May 23, 2017 6:49 pm

So glad ypu have coped well with this sudden change in your life with ileostomy.  Had ulcerative colitus for approximately 15 years.  Was given drugs for depression & sedatives.  Was a zombie and still in severe pain & no bowel control.  Was near death when surgery was done.  Am a 76 year old, had ileostomy 31 years ago.  Very healthy.   Good luck to you!!

Posted: Tue May 23, 2017 7:32 pm

Hi Hamish,

Sorry to hear how quickly things turned for you. I too have never posted on a site like this before either. I have had UC for about 10 years and it has been controlled by medication, so apart from taking the tablets life was perfectly normal, that is until I had a change of medication, and then like you things went from bad to worse very quickly.

I am in my mid-fifties and married and when I became poorly my wife and I were a week away from moving house. I was admitted to hospital on a Monday last September and was not even well enough to leave the ward for a couple of hours on the following Wednesday to go to our new house with my wife. It took three weeks to go from healthy to wretched, pretty gut wrenching, if you will excuse the pun.

Two days later I had my colon removed that was on the point of rupture, lucky they caught it in time. I had a lousey two and half weeks post op with infection before I was let home. I have always been a fit active bloke, I used to run a tree logging business, but on release from the ward I could barely shower or walk the length of our new bungalow without sitting for a rest.

But that was then. I followed the surgeon and nurses advice and took things steady. I had some down times with leaks from Stuey the stomer, but that was rectified by a change of bag system. Any way, around Christmas I started swimmimg and a bit of cycling to help my recovery. This last weekend I have taken part in my first ever sporting event. 400m swim, 14km bike ride and a short run. That was about 8 months after surgery. My reason for replying to you is just to say that in my personal experience the change of circumstances was initially very upsetting, traumatic even, but there has been a light at the end of the tunnel. I now lead a pretty normal life, I eat most things, there are a few things I avoid but I can still enjoy my grub. I do find red wine makes things loose, but fortunatly beer is fine. My weight did drop by 3.5 st and I am still 2 st lighter but even that has nmade me fell better in the long run.

That is my experience, everyone is different, but hang in there Hamish. I won't say it is going to be plain sailing for you, you will have some things to try out and stuff to adapt to, but I have spoken to a few other people that have gone through what we have and they are living great lives and to the full. There is light at the end of the tunnel, and it is not a surgeon coming at you with a flexi sigmoidoscopy!!!!

All the best................ Nick

Posted: Tue May 23, 2017 7:57 pm

Hi I'm new to site I also had colitis don't be nervous or worried I'm here for you 

Posted: Tue May 23, 2017 8:13 pm

Hi Hammish,  

I have my ileostomy for 50+ years, since I was a child of 15.   In retrospect, I don't know if the surgery is easier to accept after being sick with  ( UC for me /  or Crohns) for years....before having the surgery....or having an accute case....resulting in surgery as you did.  I started bleeding at age 12, very acute, and the first doctor my parents took me too, recommended surgery.   My father replied ( over his dead body) and so they went about finding me the best possible gastro drs. to be found in NYC.   I had the best.  But that meant 4 years, of pain,bleeding, medicines that  had severe side effects, 4 years out of school, loss of friends,  Months spent in hospitals, restricted to bed, and tied to iv's.   "When you get better",  was the  "vague....response, as to when I could get back to real life.   When I found out about the available surgery..... cried with relief.  I was grateful to have the ostomy, and resume a "normal" teen age life.  Its only years later, that I realized how much "time" I'd lost, how the horrible memories of the pain, and social isolation cost me.   Eventually, I was very angry at my parents for the choices they made ( for me).   And later, after I had two children, who both developed UC/ Crohn's, did I forgive them.   They did the best the could, with the choices they had.  

I live with the same horrible memories, over a longer period of time.  Back then....there were no ostomy nurses, so I was taken "kicking and screaming" to ostomy meetings, where other members helped me with the routine care that  was available at the time.  ( It was the dark ages, with plastic discs as flages, and rubber pouches that  had to be reused. The glue came in a can, was flamable, and had to dry, or you would burn your skin).   I don't know if I would have accepted my surgery so readily, if I hadn't suffered as much as I did, but those were horrible lost years.   The bottom line for you is....Be grateful to be alive, and make the most of the time  you have.   Always stop to smell the roses....and the newest though ( From next weeks Torah/ Bible portion, ( Book of numbers)  Bless your own "ordeal".   I'm Jewish, and taking part in our sisterhood sabbath, only to find the portion discusses the priestly blessings....   Everyone has a journey, and each one is different.  I'm learning at my " old age" of 68, to be at peace with the life I've lived, and continue to make every day count.   Best regards.   Marsha

 

Posted: Tue May 23, 2017 8:31 pm

I had colitis for most of my life.  I never had an acute issue, but I developed colon cancer 9 years ago and had surgery right after diagnosis, having now lived 9 years with an ileostomy.

 

You have suffered two severe traumas - one is that fact that you got gravely ill and almost died, and the other is that you now face having an ileostomy.

 

The first has to be very scary, but you do have the consolation that you made it through.  I am pretty sure that over over time that pain will lessen.  I recently listened to a podcast that presented research that showed people have the amazing ability to recover even from the worst tragedy.  It takes time, but people can turn the corner.  It's an individual journey, but the time frame, in the total scheme of one's life, isn't even that long.  There is certainly hope on that front.

 

The other tragedy is more current, because you can look down and see the pouch.  That is a tragedy I can virtually guarantee you will get over.  You are still in the newbie stage.  If you read many posts, you will find that the people who struggle are all still in the newbie stage.  A good sign is that you are already coping.  Ever since I passed the newbie stage, my ostomy has not detracted one bit from my life.  Again if you look at posts, everyone who has had an ostomy for awhile learns like I have that you can get to the point very quickly where you will be very happy, you will have figured out and solved any issues, and life on that front will be great with no limitations.

 

Just give yourself a little time.

Posted: Tue May 23, 2017 9:52 pm

Hi Hamish,

Although I had UC for few awful years in my 20s and was adamant I was not going to have anything attached permanently to me,  in the end I also got a toxic mega colon accompanied with brain clot and didn't get a choice! The brain clot was a direct result of the persistent bleeding and clotting. When I woke up from the coma, my whole left side of the body was paralysed and i was in excruciating gastropain as I desperately needed to have the colon out, but as I needed to have my blood thinned to the point of literary walking that fine line between bleeding out and surviving they couldn't operate. In the end the gastro surgeon was given 2hrs to do the surgery whilst the hematologist managed the blood thinning.

I had no time to make an informed decision about the stoma as previously Ididn't even want to hear about it and thinking back in my confused mentally compromised state after the "stroke like" event I didn't comprehend much of what was said before the surgery.

When I woke up paralysed and with a stoma, I just wanted to die. I was 28 when it all happened and my husband was being supportive, but also almost losing the plot too (I only appreciated what he went through later, as everyone is focused on the patient and the partner has to just be supportive and keep saying that we will get through this together.

I had body image issues to start with and still do. I managed to recover and now have full mobility as if I was never paralysed, but ended up with epilepsy agter the surgery which is thankfully medically controlled by pills.

I guess what I am trying to say is that you are lucky to have had such a lucky escape! As for the stoma, I got used to it, but now as I am about to be divorced it is becoming a truly limiting factor in finding a new partner. I know there are people out there going through similar issues, but that doesn't make it any better. Bottomline I am still here and have a lovely 6 year old.

You'll get used to it, there is no choice really, I keep telling myself I must be grateful to be alive and withough being stuck in a wheelchair, but in those dark moments I still look down and feel depressed, not because of having to look after it, I've got that to a tee, but having to live with a barbie bump and having limitation with sex (I.e. not for me, but for my partner as not easy to find the right angle and not slam into  pelvic bones.

I was supposed to write a cheer up e-mail, but ended up on my sob box. Look on the bright side, you'll get over it and adapt. Humans are resilient. I am a scientist myself and always trying to normalise stuff, but it's not easy. You'll have to get over it and not let it ruin your prospects. Good luck!

Posted: Wed May 24, 2017 4:02 am

Hello,

 

Firstly, thank you to everyone for your replies. It is comforting to know that everyone feels like I have been at first.

I've been finding that I cope with it pretty well for abput 80% of the time, and the other 20% of the time is usually when I'm not doing anything and I allow my mind to wander. I always end up getting bogged down on either things that have happened, particularly the day of my surgery, which is an odd one as I never feel down about the time I spent awaiting my surgery, I instead find myself feeling upset about the time before my final sigmoidoscopy where I had spent the morning being sent for scans and blood tests but hadn't heard anything back. The 15 minutes prior to being knocked out were the scariest 15 minutes of my life, I think primarily because of how confused I knew and how desperately I didn't want surgery. Once I was told the surgery was coming, I obviously felt defeated in every way, but I think the fact that I knew for certain what was happening calmed me down. 

By simply writing my original post I have found that I feel slightly less overwhelmed by everything. Obviously physically writing down what I'm thinking about helps me in some way, so perhaps I need to do more of it. Unfortunately (maybe?), I'm a very analytical person, and I've always been fascinated by science, particularly medicine hence why I was studying biomedical science at uni in the hopes of doing medicine. This will probably allow me to have a more personal connection to what I plan on doing, which is good I suppose. I say unfortunately because the disease that I (and everyone else here got/has) doesn't have a known cause, nor does it have a known cure. For me, I think I'll always want to know why it happened, even if it's a simple mutation and it's bad luck. That's good enough to shut me up.

Anyway, colitis rant over. I still have mornings, particularly on a morning when I know it's "bag change day" when I wake up and just lie in bed for a while putting it off because I hate the fact that I have to factor it into my morning routine. Additionally, I have recently been finding that I have nights where it will take me an extra hour or two to get to sleep, simply because my mind will be rushing back and forth between all the things that have happened, are happening, and will happen to me soon, such as going back to uni while having a bag. I know that no one knows, and if they know they probably don't care. If they have an issue then they aren't worth my time. While I've accepted that, for some reason I still stress about general social interactions. I've never been a hugely confident person anyway, so at the moment it feels as though the surgery was the nail in the coffin from a social point of view. I'm sure I'll be fine, I think I'm just venting.

Thanks for reading and thank you all for your kind and supportive messages. I'm sorry to hear about how terrible of a journey some of you have had and I'm glad to see that everyone has grown stronger in their own ways and that you haven't let it ruin your life. I don't plan on letting it ruin mine either, but it has been a very tough few months. From my own experience, I'd argue that it's been tougher post-surgery than pre-surgery, but I know I wouldn't be saying that if I lived with the colitis for much longer than I did.

 

Thanks again,

Hamish

Posted: Wed May 24, 2017 7:13 am

Hey there,

As you seem to be as analytical as me (I did genetic engineering in uni), have a look at the research DR Miles Parkes of Cambridge University hospitaI, UK does (he saved my live, literary rolling me into the MRI scan, as only a handful of people have survived what I had to tell the tale and I was seriously studied by the students in the university, as the link between saggittal sinus thrombosis and ulcerative colitis is not the first thing that pops into a run of the mill gastro consultant, but DR Parkes is the UC specialist to talk to. I am in his research sample investigating potential genetic link and tailored treatment.

When my treatment of 5 years with another consultant who prefered to play golf as oppose to focus on his patients and his efforts made no real difference besides being pumped with steroids, I did some online research, read papers and found Dr Parkes and 1 more consultant in London. Dr Parkes was closer as I live very close to Cambridge.

All I can say is huge thank you to him, to the neuro consultant and the surgeon who performed the brain surgery inside the CT scan at 2am! Another very lucky coincidence to have 1 of the  only 2 brain surgents in UK who can do that surgery successfully (also in Cambridge).And the gastro surgery team of course!

I reviewed all my medical records, scans and notes. Even attended a training seminar for neurologist who discussed my case of conning and coming back from the dead!

I was watched like a hawk throughout my pregnancy and still had an eclampsia and an emergency surgery by the most experienced obs-gyn who wasn't even supposed to be in the hospital, but returned to his office to pick up paperwork and was seen by one of the A&E Nurses! So if I had an angel looking over me, it was watching closely;)

All the best! You'll be alright!

 

Posted: Wed May 24, 2017 8:47 am

Hi pembedata,

Dr Parkes sounds like just the guy to have looking after you. He seems like quite a remarkable doctor, and it's great to read about these people researching diseases that are far less commonly known but cause so much damage. I was lucky to have a fantastic gastroenterologist too, Dr Soong-Yuan Ooi. Easily the most fantastic doctor I've ever met. I was booked in to see him nearly a week after I was admitted into hospital, but he told me that the day my dad called him he spent the night going over my multiple test results and reports from my GP. He called me first thing the following morning, at about 7:30, and told me to get myself to hospital so that he could see me as he didn't want to wait until our appointment. Luckily, he shut me down pretty quickly when I tried to tell him that I had a compulsory university practical class that morning! I shudder to think of what may have happened by the time I was meant to see him six days after he called me... scary stuff.

My surgeon, who is fantastic, and who Dr Ooi as well as a family friend (who is also a colorectal surgeon) said multiple times that if they were to have a colectomy, Dr Clark would be whom they'd trust to do it well. I was told some horror stories by the stoma nurses about some patients they have seen whose scars were pretty poor, whereas I have four little knicks (maybe 1.5cm long) and a longer scar in my lower abdomen/groin area. He was great for me as an analytical person because he was very forthcoming with information regarding the J-pouch that I'm booked in to have in November (though some of the risks are a wee bit scary).

As I said in my original post, while everyone that looked after me was great and they all collectively saved my life, I feel like Dr Ooi was the only one who wasn't just talking to me on a professional level (other than the nurses, though I rarely had the same one twice). He'd often see me multiple times a day, though he had a conference during my final week in hospital and so he had a stand-in gastro visiting me. I'll never forget when he came to visit me two days after my surgery at 8:00 on a Sunday night just to see how I was coping with it all. Again, while my surgeon saved my life and I'm extremely grateful for what he's done and how well he's done it, I couldn't thank Dr Ooi enough for basically dragging me to hospital, trying everything he possibly could and always checking to see how I was coping during every step of the way.

Anyway, this is getting a bit emotional, but it's hard some days when it feels like the gastro was the only one (other than my parents, of course) who really got what was going on emotionally. A simple reply to your story about Dr Parkes has turned into somewhat of a rant. I think there's a pattern forming in my posts! Letting out emotions never hurt anyone, I suppose. Please let me know if my posts/rants are getting a bit too much or a bit too hostile, don't want to come across as a grumpy or ungrateful bastard.

Thanks,

Hamish

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