Feeling hot hot hot 🌞🌞🌞😰

I’m not a lover of extreme temperatures and to me, used to living here in rural West Wales these temperatures are pretty extreme. Plus having two stoma bags to contend with just make it rather unpleasant at times. Whereas previously the fistula bag used to leak all the time, it now melts onto my skin which makes removing it a rather arduous task taking several hours every other day if I’m lucky.

Life has been busy since the heatwave hit. Hot weather means lots more stuff going on and as I’ve said before my husband is rather a social being and will never turn down the offer of a ‘jolly’. I’m not in the same league, never was and it didn’t really matter before but now these things take much more effort on my part.

So we have been out and about quite a lot and had a few family BBQs. In my head that is all fine, the buying and the planning all comes as second nature. What I find is, on the day I quite often don’t have the energy to carry it out and feel overwhelmed. But people just do not understand unless they too have experienced chronic illness. I look well on the outside as I get on with life but inside it’s different. I’m in constant discomfort, clock watching for medication and hoping this latest alarming symptom isn’t going to turn into something more serious. I also find that once the batteries have run out then that’s it, until who knows when. ‘Sit down and have a cup of tea ‘ helps enormously but don’t expect me to get up again any time soon. I’ve tried to explain this to my nearest and dearest but it’s a losing battle with most of them. My husband by his own admission is a dinosaur and devoid of any empathy unless I’m seriously ill.

I expect this need to pace yourself when you have a chronic condition is explained far better by The Spoon Theroy :-

For people with chronic ‘invisible’ diseases, there is another level of thought that has to happen as you consider what your body is capable of in any one day. One chronic illness sufferer explained it by us having a limited number of spoons (energy) and so we have to use those spoons very carefully.

Faced with a friend asking what it was like to live with chronic illness, she started explaining the aches, pains and other symptoms she dealt with on a daily basis. But she soon realised just explaining was not enough; her friend needed to experience it.

The spoon theory, uses a handful of spoons to explain how every action taken by someone facing a chronic illness represents a ‘spoon’. While a healthy person may have an unlimited number of spoons, the chronically ill only get a certain number of spoons per day, and once they are all gone then that’s it – no more spoons (or energy) for the rest of the day.

“I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon.”

Some days you might have more spoons than others and be able to achieve more. But on others you might have to borrow tomorrow’s spoons, knowing that you’ll be left with less for the next day. You might have to choose between making dinner and getting the household chores done etc.

“It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count spoons.”

Figuring out what you want to spend your spoons on means sufferers of chronic illness are all too aware of the importance of time.

My life is not really conducive to counting spoons. I can just imagine me telling my husband that I’d ran out of spoons – he would mutter ‘gobbidy gloop clap trap’ no doubt. I want to be part of my family’s life but it is all rather busy yet if I say no, I feel bad as if I’m letting the side down plus this fistula has taken too much from me as it is. I know I have to find a way of living with this as there is no cure. More surgery is tempting but could kill me so I cannot risk it yet. Not now.

I’ve been ok the last couple of weeks apart from more pain in the region of the fistula. This usually means something is brewing but I’ve been managing it with pain killers and rest ( when I can). I can never really relax though not knowing what is going on inside and what damage is it causing. Is it getting worse or better, I just don’t know and that’s hard to deal with. I haven’t taken antibiotics now for almost two months which is good but I’m having quite a problem the last few days. I awoke this morning about 8, after a very restless night. The heat was oppressive, the cat kept finding a way in and I awoke several times to him pawing my hand for me to get up. ‘It’s 4am Sooty, bogg off ‘ didn’t work. So I shut the bedroom door………more on that later.

So as I said I awoke at 8 and my fistula bag had leaked and I was was covered in blood. It looked like I had been stabbed. I felt ok, no chills, no high temperature, no rapid heart beat – having had sepsis you never forget. But I was in some pain so I thought il ring doctor…..for some reassurance (oh hang on, things have changed, remember )

The recorded message tells me I’m 9th in the queue. This is quite normal and I wait about 20 minutes to be answered by which time only emergency appointments are available. The conversation went like this –

Receptionist (let’s call her Rotty) – well what’s wrong with you exactly. (She was actually laughing at something as she answered the phone which was instantly annoying. But then again I am Mrs. ANGRY).

Me – I have a fistula and it’s bleeding

Rotty -a cyst is it ? Weeping cyst is it ?

Me – No I have a fistula, am enterocutanous fistula and it’s bleeding more than Im

used to. I’m not sure if it’s an emergency that’s why I need a doctors opinion.

Rotty – how do you spell, um, what did you call it?

Me – 🙄🙄🙄 🙄 ( give me STRENGTH)

So she finally decides she doesn’t know what it is and so cannot assess if it’s an emergency or not. She asks her colleague who I know is completely medically untrained who decides it’s not an emergency and a phone call will do. The procedure at our surgery is, I now wait in all day for a doctor based 80 miles a way to ring me who will probably tell me to go to A&E or to make an appointment to see my consultant who is also 80 miles away from me. All I want are some blood tests to make sure all is ok so we shall see what happens. It’s now midday and no phone call. Even though I don’t think I will have the luxury of growing old, if I do I actually dread becoming incapable and more invisible than I feel now. It frightens me.

Whilst I was on the phone to Rotty, and unbeknown to me, the care home where my mother is, had rung. They had left a message at 530am this morning, could I ring them back NOW. This is why I never shut the bedroom door, so I can hear the phone. Thanks for that Sooty.

Anyway I ring the home and am told she has had some kind of seizure in the night, was foaming at the mouth and screaming, and has been rushed to hospital. My heart is now racing ( anxiety not sepsis hopefully) as I phone the hospital to be eventually told she is fine and has been discharged back to the home.

Not even mid day. Not a spoon left.

So remind me, what is a fistula?

I get asked this a lot by friends and family who are keen to know why I’m still back and fore to the hospital as surely I should be better by now. I wish.

This is what I have learnt about what an enterocutaneous fistula actually is (ECF) and how it affects your life.   You never know, it may help someone. When this happened to me I never even knew what a fistula was despite being a bit of a medical nerd.

So here goes …

What is a Fistula and what causes them?

Fistulas are usually caused by injury or surgery, they may also form after an infection has led to severe inflammation. Inflammatory bowel conditions such as Chron’s disease and ulcerative colitis are examples of conditions that lead to fistulas forming between, for example, two loops of intestine. There are many different types of fistula such as anal fistula or rectovaginal fistula. Plus some fistula are deliberately created by surgeons between an artery and a vein if someone needs dialysis for example. But here we are looking about Enterocutaneous Fistula which is my particular demon 👿 / angel 👼🏻 depending on how you look at it !

So what is an enterocutaneous fistula?

This can be explained by breaking down the words into their different parts:

‘Entero’ means bowel or gut.

‘Cutaneous’ means skin

‘Fistula’ is an abnormal connection between 2 surfaces.

So an enterocutaneous fistula means an abnormal connection between the bowel and the skin.

Despite the fact they are viewed as a devastating complication (demon👿), they are actually saving your life ( Angel👼🏻). If the bowel contents resulting from the perforation for example, collected inside you and did not come out via the fistula, you would develop sepsis and become seriously ill.

I try and remind myself of that every day but it’s not easy. I have never accepted my fistula and I struggle with it, not everyone’s coping mechanisms are the same. If a fistula is as a result of a life saving bowel surgery for example, then maybe it would be easier to accept, I don’t know. They cannot tell me why mine happened, I went in for a hysterectomy in pretty good health but ended up with a fistula. I did have a long history of chronic health problems, bowel disease for which I have an ileostomy plus severe endometriosis but the experts say these conditions have not caused the fistula. Attempt at repair two years later nearly killed me as I had respiratory failure. They cannot give me any medication as they cannot find any underlying disease yet it doesn’t heal. It’s not stable and causes frequent problems with infections and pain, often requiring a hospital visit.

So what does this mean for me ?

A fistula is a dreaded complication of surgery or illness – a complex medical and surgical problem that will need to be managed initially by a large number of healthcare professionals working as part of a multidisciplinary team. The team will focus on four main areas: sepsis, nutrition, anatomy and protection of skin.

The defects in the bowel produced by the fistula can result in bacteria leaking into the abdomen, causing a collection of pus. This is often referred to as ‘abdominal sepsis.’ If this is suspected, imaging (e.g. a CT scan) will be used to see where the collection is. The collection will need to be drained using a small tube and treated with antibiotics.

The main role of the bowel of course is to absorb nutrients from food and fluid. If there is a connection between the bowel and the skin, there is less time for the nutrients to be absorbed, and some nutrients will be lost through the fistula, usually into a bag placed over it. In addition, when the body is fighting infection it needs more nutrition than normal. Therefore, with less absorption and higher nutritional requirements, patients with fistulae can quickly become malnourished and lose weight. Electrolytes are the salts in the blood like sodium, potassium and magnesium. These are vital for many important functions, including regulating fluid balance and controlling our heart and muscle contractions. The problems with absorption can result in losing huge quantities of these salts from the body. This can result in dehydration and cramps which can lead to more serious complications. Whilst in hospital, the team may replace the salt and fluid using intravenous fluids or you may also be put on Trans Parental Nutrition (TPN) which means you will receive all your nutrition through a central line. This will ensure you get all the essential nutrients required amongst other things to facilitate healing, whilst resting your damaged bowel. TPN is called ‘liquid gold’ by some people as it is tailored to your individual needs depending on specialised blood tests. But like everything, there are massive down sides. I have been on it a few times for a few months at a time. Some people are never able to come off it.

Leakage from a fistula can be a distressing experience. The same enzymes in your gut that will digest a juicy steak will make contact with your skin and cause it to become excoriated, which means very red and sore with the skin breaking down just like that piece of meat. It is very painful and prone to infection which makes a bad situation worse. Therefore fistula care by the ward nursing staff, led by a specialist stoma nurse, is vital in preventing these problems. Medication may also be used to reduce the output and acidity from the fistula. You will see a stoma nurse when in hospital and a plan of care will be put in place for the ward nursing staff to follow. Once discharged you will have access to a stoma nurse if any problems arise. They will occasionally do home visits if necessary or you can go to the hospital.

The ongoing management of a fistula depends on so many factors. Each fistula is individual to that person and it’s very hard to generalise. Some people will have their fistulae repaired by undergoing more surgery. Unless faced with an emergency situation, there is usually a wait of at least 12 months before this can be attempted. Some people will have to continue to receive nutritional support at home ( Home Parental Nutrition or HPN) through their central vein as the damage to the gut is too great and normal nourishment would mean essential nutrients would be lost resulting in malnourishment. In other words the food and waste would come out of the fistula before giving the bowel the chance to do its job – absorb all the nutrients and fluid from what we eat and drink. It depends of course on where in the bowel the fistula is. HPN tends to happen more with a fistula that is high up in the bowel, this usually means the fistula output is high (as much as several litres per day ). If however the fistula is lower down and the output from the fistula is fairly low ( under 200ml per day ), then it’s usually possible to eat and drink normally, whilst wearing a stoma bag over the fistula. In my case I now wear two bags; one for the ileostomy which has served me so well for 33 years 👼🏻 and one for the fistula. My fistula is before my ileostomy so you’d think everything would come out of the fistula. Thankfully this isn’t the case. Most goes out through the ileostomy which is great news but some comes out of the fistula and whilst this connection remains it will never heal spontaneously.

If the cause of the fistula is found to be inflammatory bowel disease then sometimes medication can be given which will heal the gut and maybe the fistula. It is likely you will have to remain on these drugs for some time to control the underlying disease which may in turn keep the fistula closed.

Sometimes no definite cause can be found for the fistula and the patient may not be suitable for surgical repair. In these cases the patient will have to manage the fistula. This can prove to be very challenging, as it is likely the patient will need to wear a stoma bag over the fistula along with dealing with the daily problems a fistula can bring. As a fistula is quite often recessed into the skin ( unlike a stoma which has a ‘spout’), managing the bag can be tricky as leaks are often frequent but there are ways around this and your stoma nurses will be a valuable resource. I personally have found a wound bag to be most effective, it’s not pretty but it does the job, most of the time anyway.

A fistula is essentially a tube which our brilliant bodies make to keep us alive. Unfortunately Infections in this tube and surrounding areas are common and may require periodic treatment with antibiotics and /or pain killers.

Fistulae are described as a surgical catastrophe. They are most certainly a very difficult complication which can be extremely challenging for the medical profession to deal with. But the main challenges will have to be met by the patient – in my case, I have found it to be like changing. To go in for an operation in reasonable health and come out with a fistula is devastating. I had had a stoma bag for some 33 years previous to this and had managed it well, working full time and leading a normal life. I never even needed a stoma nurse. This however was so different and way more difficult and three years later it continues to be a big factor it my life. It’s not that stable and causes frequent sudden ill health meaning I cannot really have anything like the life I used to have. This is my new normal and I ( or I should say ‘we’ as it affects your nearest and dearest too ) are still learning to accept.

But we carry on and enjoy the good days. I am actually very lucky compared to some fistula patients but I am obviously very sad it happened and struggle with the ongoing consequences.

Hope this has given you some insight into what an Enterocutaneous Fistula actually is.

Fistula 1 – Me a big fat zero

So following on from my fairly good week up a mountain, things came tumbling down, just like Jill who went up the hill to get some water.

I finished my last blog by saying I was experiencing a worrying amount of pain. I didn’t go the doctors as believe me there is no point unless –

I’ve got a temperature / chills or

A really worrying obvious symptom

As I’ve learnt that when you have a fistula, providing you are vertical, breathing and conscious you are actually ‘doing fine’ and no one wants to know as there is nothing they can do.

Anyway, Sunday started good and we decided to go out for the day. We live in a beautiful part of the world and I love the sea which is close by. However my husband being the man he is, cant go local as that’s boring, he wanted to go miles away. I agreed as it’s easier. Half way there I feel unwell, call in a shop to go to the loo and blood! Quite a lot of it in my fistula bag. My pulse is normal, I don’t have a temperature but this looks alarming. My husband is none too impressed at my news and insists I’m fine. That word again, fine. How I hate that word.

We go to the hospital and Mr. Angry ( My husband ) huffs and puffs at the prospect of spending hours here. I was seen fairly quickly by a triage doctor who said I needed to have further tests and I’d done the right thing. I was then called into see s more senior doctor who listened to my story and shook his head in disbelief, he apologised that this had happened as he stared at my stomach in disbelief. He was really lovely and said he respected me as I had been through more that most and yet still could smile. Mr. Angry remained quiet for once. The doctor organised X-rays, and a cannula was out into my arm, this unnerved me slightly as I really didn’t want to be kept in. I was sent back to the waiting area and ate a Milky Way. This is how ridiculous my situation is, I can have really worrying symptoms yet not actually feel ill …….but maybe that’s to come.

I was called back to see a surgeon, I was now a bit worried as whenever the word surgeon was mentioned, A sense of panic ran through me. He was a young Jamaican doctor who also grimaced at my story and the state of my abdomen. You can tell however they all love a fistula, it’s rare and they probably don’t get to see many. Another doctor joined the party to have a look. However, He said how well I looked and reassured me that all my bloods were good, he didn’t feel there was anything going on below the surface but I was so complex he wanted to examine me which he did. I was discharged with the standard advice of ‘come back if you get worse’. I don’t find that particularly reassuring but again I have no choice.

We drive home in silence, another day ruined (his words). As we approach home I realise the cannula was still in my arm. I could take it out myself but think better of it so back to hospital we go again………lead balloon comes to mind.

I was glad I’d gone to A&E and that my tests were ok but I have no idea how to manage this and try to have any sort of life as in my case, the two don’t really mix. Many of my fistula friends are now single and I completely understand why. I find it very difficult dealing with my husband’s constant disappointment as well as my own sadness. My needs are far less than his, my goal posts lower and that’s fine but he is just bored, fed up and resentful.

Let’s see what this new week brings………..

Snakes, ladders and stuff………

Think I have mentioned before that life with an enterocutaneous fistula is like a game of snakes and ladders, ups and downs, rollercoasters. I’ve done them all in the last three years.

Well this week is no exception. Firstly for new readers what is an enterocutaneous fistula. Well it’s a bloody nightmare that’s what it is but in medical terms it’s this –

An enterocutaneous fistula (ECF) is an abnormal connection that develops between the intestinal tract or stomach and the skin. As a result, contents of the stomach or intestines leak through to the skin. Most ECFs occur after bowel surgery.

Yes it’s gross. But Im lucky as most people with ECF cannot eat nor drink and believe me that is really hard. My particular fistula came after a hysterectomy, long story and covered earlier on. I wear a small bag over the hole and it’s mostly manageable but, well there are lots of buts ☹️

I ended my last update by telling you that I had some really bad pain. That was last Sunday, I awoke with it and it continued all day, all week. I did go to the planned event we had on the Sunday and everyone told me how well I looked. That really is lovely of them but it’s not always a reflection of how I feel. Plus pain, especially obstruction pain terrifies me. What is an obstruction you may wonder. Well for me it’s life threatening plus the most painful thing I’ve ever experienced including giving birth ( my baby was 8lb breech, no c-section in those days unless it was an emergency ) . So yes I have experienced pain and a bowel obstruction is the worst. Why life threatening ? Well I have an area in my bowel which is friable This is where the fistula is and so any pressure on the bowel could blow this open resulting in septic shock and possibly death. So yes when I get these agonising spasms I worry, a lot.

Bowel obstruction, also known as intestinal obstruction, is a mechanical or functional obstruction of the intestines which prevents the normal movement of the products of digestion. Either the small bowel or large bowel may be affected. Signs and symptoms include abdominal pain, vomiting, bloating and not passing gas. A serious medical / surgical emergency usually requiring hospital admission.

But I went to the do as planned as I didn’t feel unduly unwell and so I took painkillers and prayed. All went ok apart from the fact everyone got rather drunk and I ended up ferrying everyone home when all I wanted was for someone to look after ME. But hey ho I’m used to that. The week progressed and the pain gradually got better.

Our life is busy and on the Bank Holiday Monday I’d arranged a BBQ for my daughter and her family to welcome them home from holiday. They arrived at 6pm and all went well. I did all the accompaniments, hubby did the BBQ and I sipped on a protein drink too scared to eat as the pain gripped my side every so often. It was so lovely to have my daughter home, I feel safer when she is around. We had our granddaughter for the next two days and that was exhausting but she makes me smile and I love her so much. The rest of the week past ok apart from me going to a new hairdresser – it didn’t go well 🤣 she had a problem with her business partner and it all kicked off whilst I was there. She was in a state and I ended up spending my ‘ME’ time trying to advise her on what I would do ( she asked ) whilst secretly worrying the chemicals she had put on my hair was actually destroying it ! It was ok. Ish.

So today is Friday 1/6 /18. I had my blood test results and …….drum roll…….

They were actually quite good! Inflammatory markers were down and my blood count was up, no longer anaemic and I was actually quite pleased. Following the doctors I went to see my mother in the home and my Happy mood was replaced with sadness and tears, as she asked me ‘what happened, why am I here’. Absolutely breaks my heart but maybe that’s one for another day.

I decide to go out tonight to celebrate my nephews rugby achievements. It all went ok until my granddaughter fell off the stage and a child fell on top of her. She was hysterical and I couldn’t get to her as all the kids crowded round to have a look. I eventually managed to grab her and pick her up and she was breaking her little heart. Her mum and dad came to the rescue and we took her home. It was way past her bedtime, she was shattered and my daughter is 6 months pregnant so I had to stay to help out.

I got in about 10pm to find my fistula bag full of blood.

I have no idea why, what, or how. I feel ok, no chills or fever.

So I have a glass of wine and just hope for the best. I don’t know what else to do. Two years ago I’d be in a&e now but I have to just ride the storm I guess.

I suppose when you get this life changing devil enter your life you expect the cavalry to come and save you, but there is nothing. No help as it’s quite rare so no one really knows. Plus I look well so I feel no one believes me half the time plus it’s been going on so long, people get used to it. I don’t. I doubt I ever will.

Cavern deep and Mountain high ……

It’s been a busy week and I think I can safely say –

Fistula 0 Me 1

We decided to go to North Wales for a few days. I wasn’t looking forward as I’m such a home bird I don’t actually like going away. On saying that this fistula journey has taken so much from me I realise I have to compromise a little, or my marriage will be the next casualty. We have been married 38 years and like most we’ve certainly had our ups and downs. Chrons disease the early years caused many problems. My husband left his beloved job in the Royal Navy as at one point I was given three months to live. That was 33 years ago and I’m still here! He loves to travel and this fistula has seriously compromised our life. So I agreed to go on our little holiday and it was a success! . There were some ground rules before I went – I would not eat a full meal every night and I probably wouldn’t go in the spa. My husband loves going for food but I don’t, thanks to fistula. I tend to graze now and try to eat healthily but no big meals for me. Most of the time that’s fine but causes occasional problems. We travelled up on the most beautiful day and arrived at our lodge, which was lovely. We made a further journey to Snowdon and had booked the 430 train. It was boiling and I was already thinking had I made a mistake. But we got on the train and commenced our ascent in stifling heat. We got to the top and a cool breeze saved the day. The views were amazing and we took a few photos just to prove we had actually done something. The journey down was far more comfortable and I was glad to say I’d done it.

The fistula behaved well as did my stoma. We returned to the hotel and hubby now wanted to go swimming but I said no way and fell asleep on the bed. We had room service which provided some sandwiches and that was fine for me but hubby was feeling sorry for himself as if he doesn’t get a hot meal every day I’m sure he thinks he will die 🥊🥊

The next day was grey and cooler so we decided ( or rather he decided) we’d go down a slate mine. This sounded very boring but I reluctantly agreed and off we went. As it happened it was quite spectacular if not very very cold. When we eventually came out of the cavern I had a mug of hot chocolate and a biscuit. Normal life, normal things. I felt ok, I do take painkillers regularly but nothing too hefty and they do help. We went back to the hotel and went for a meal, I had a starter as my main and no one batted an eyelid apart from hubby who said ‘ you don’t eat enough to keep a bird alive ‘. Totally ridiculous comment as I reminded him I am actually two stone overweight. I am so not your typical enterocutaneous fistula (EF] patient. I can eat and drink ( thank God) and I’m overweight. No one gets it, even my consultant who is a Professor and lead surgeon in the colorectal unit in Cardiff ( Wales ‘ largest hospital ) does NOT GET IT. Before you think ‘second opinion ‘, I’ve had one from another Professor in London. The problem is of course as an EF patient I am doing really well. So why risk an operation that could make things much worse? That’s what they say anyway and I totally understand that, but I so miss my old life and struggle to accept what happened .  I hate the new miserable, anxious me, who can’t even lift a bucket in the garden.  The Me who has become so scared of life, I can’t live.  I used to do so much more than I do now. I know the mistake I’m making in dealing with this;  I’m focusing on all the negatives instead of the positives – I’m Alive and living a life – it really could be so different today.  My husband hates my negativity and it causes so many issues but he is healthy and well, his problems by his own admission are self inflicted as in poor lifestyle choices – drinks too much, loves his food, normal bloke I guess.  But a ruined knee means he can’t do the exercise he once did and he won’t have an op as there is no one to look after me, no one to drive me to hospital etc etc .  He is due to have a knee replacement in October a few weeks after our second grandchild will be born so I’m just not sure how that will pan out.   It the point I’m making is it’s easy to say to be positive when you haven’t had the experiences us with chronic illness have,  walk a mile in my .shoes and I doubt he’d be positive.  He can’t cope if we’ve run out of beetroot – another story for another day 🤣.

But I am here, I am living my life and I am surrounded by the love of family and friends and so I have to gain some positivity and enjoy what I can, when I can.

I have been better the last 6 weeks and there is one reason for that – antibiotics. That will be the subject of my next blog I think.

 

EDIT – 14 hours after writing this I’m in serious pain. I think I had a blockage but it seems to be resolving itself .  This is how it is with chronic illness, a carousel, ups and downs, downs and ups.  We have a big day planned today, will I make it?

My own worst enemy ………..

Why do I watch programmes I know are going to upset me, said my long suffering husband. Well the answer to that is – I didn’t know when I put it on what it contained and then got so upset I couldn’t turn it off. I was doing my dressings and the remote control had fallen under the chair, I couldn’t move until the dressings had ‘set’. The programme was Hospital, a BBC2 documentary. Some awful stories the worst being a beautiful little girl with cancer, heart wrenching and it makes me question this thing called life. The other stories were about people with equally horrible cancers and surgeons who are queuing up to leave the NHS owing to the daily pressures they face. Very depressing especially for someone whose life is now surrounded by doctors and hospitals. My husband came in to find me in floods of tears and thought something awful had happened. He never watches programmes like that as he says life is difficult enough and he is probably right. I won’t be watching it again.

I went to see a new surgeon a few weeks ago, a medical doctor as opposed to surgical. On examining all the evidence he felt my fistula is a surgical fistula and as such there is no medical treatment. He said they are usually sorted out surgically unless you are like me as in very complex in which case it’s probably best to avoid surgeons for the foreseeable. He did recommend antibiotic therapy which I wasn’t happy about but I need to get some normality back into my life. It is very depressing waking up in pain every day when life is busy and I have to carry on or I let people down. He hoped the antibiotics will get rid of the low level infection that I have and make me feel better. I’m two weeks in and can’t say it’s been life changing but my husband thinks I am better. Il give it a go and see how get on. I am however acutely aware that antibiotics are the demon drug and this is not a long term solution. I went to see my own consultant a week or so after seeing the medical guy. He told me to try the antibiotics but I could tell he wasn’t too enamoured. I also read him parts of a letter I’d written to him but hadn’t sent. I expressed how I felt broken and sad by what had happened. How I had been so well prior to the op compared to now and the thought of no cure or no treatment is very depressing. I told him I felt it was slowly poisoning me and the fact my eyes are now affected surely indicates I’m not far off the mark. He looked crestfallen and I wished I hadn’t opened up to him. (I always feel the next person he will see will have cancer or rabid Chrons and then feel ashamed I cope so badly). So he gathered his thoughts and said it wasn’t a good outcome but it could be so much worse. I was managing my nutrition which was the most important and whilst my bloods aren’t normal they are ok despite the fact I’m now anaemic. But I admit I don’t eat much red meat or green leafy veg and I agreed to taking the iron tablets prescribed. My problem is I compare myself to how I used to be and how I am now and there is no comparison. I miss the old me, the old life when things were so easy even though I didn’t realise it………

Easter became like a mini Christmas. We had my twin nephews for a few days and the weather was looking grim. I managed to arrange a caravan last minute in a nearby caravan park. Now ordinarily I’d rather eat my feet than go on such a holiday but I thought the boys would enjoy as there was plenty to do. So off we went, it took us under 10 minutes to get there and the caravan was nice. The boys were really excited and as I unpacked everything they went to the pool with Stephen and my son in law to be. It seemed a lot of unpacking for just a few days but so be it. The day passed quickly and everyone was happy. That was until we realised there was no internet in the caravan! How dependant we are on the Internet! Well I am and so are the twins. However, it was good (apparently) to be internet free for a limited time and we played dominoes and some other silly game. I slept badly and at 2pm the next day whilst everyone was meeting the Wannabe Red Coats in the clubhouse, I snuck home as it was literally 2 miles away. I needed to get some clothes for the evening and used the time to relish the peace and solitude my home gives me. I eventually made my way back to the caravan and we all went out to the club house for the evening entertainment. The restaurant is situated in a lovely spot and I was able to watch the tide rolling in whilst the children played and the men watched the sport in the big screen. The night became a bit rough with a scuffle breaking out so it was back to the caravan for yet more dominoes. My sister was also staying on the Saturday so we had a bottle of wine and we all enjoyed. It also helped me decide I did not want to buy a caravan after all. Too confined, too noisy and too expensive. We could have numerous luxury cruises for the cost of the caravan and if I am forced to leave my home, I like a bit of luxury. I really don’t understand people who go away and stay somewhere less comfortable than home. But I think if you have been chronically ill all your life, your goal posts are lower than others, I have never felt the need to get away from it all, if I’m well, I’m happiest at home especially if the sun is shining. I suppose that is one thing I would go away for, warmth as this winter seems never-ending.

So life with the demon within goes on. Our big pond has been filled in and I’m planning the new area which I enjoy doing. The winter is hopefully behind us and I won £75 on the premium bonds! So all is ok but life with a fistula is like a big game of snakes and ladders and one day I climb the ladder but next day the snake gets me, that’s just how it is .

Looking back with fear to this day last year………

One year ago today I nearly died. I was given minutes for them to get air into me or my heart would stop, I remember it all. I remember them words ‘ this lady is going to have a massive heart attack if we don’t act quick’. It was the NHS at its best, the crash team, the whole shebang and they did save my life, but il never forget.

Not usually one to dwell on really bad experiences, this is different, this won’t go away.

I remember the day so well, I woke up sad that I’d woken up, I felt that ill. I don’t think I was believed as to how I’ll I felt, as I had had major surgery twice in the last few days, and it was sort of expected. Until they took my temperature which topped 104. Doctors were called and sepsis mentioned. It all happened slowly yet I could feel myself getting weaker and weaker. My husband arrived and I could see the sadness in his face as he looked at me realising I was not improving. He encouraged me to try and sit up and he put his arms around me, I could feel his tears fall on my neck as I told him I couldn’t do this anymore, I just wanted to go to sleep and not wake up.

I lay down, he held my hand, nurses flitted back and fore and then it happened – my lungs stopped working , I could not breathe, there was no air. The rest is history and I can’t relay it all again even to myself.

I recovered from the respiratory attack quite quickly. I was told sometime later the nasogastric tube had become displaced and the nurses hadn’t noticed. My stomach filled with copious amounts of bile which eventually squashed my lungs so much there was no room for them to inflate. Hearing that terrified me and still does.

But I am here and a year later my lungs at least seem to be ok. The rest of me is still struggling to try and continuously heal this fistula. My poor body is trying so hard to heal yet I don’t think that is possible without more surgery. Once you are in this situation there are rippple effects as my limited diet now means I’m anaemic which will compromise my immune system. I have a very sore eye again which shows my body is struggling with all of this. At times I think how much can one body take.

Have a busy day planned and I will be so glad when this day is over. Despite my moans and groans, I know we live in a beautiful world and I have many people who I love dearly, I’m not ready to go anytime soon ❤️