Stay away from Dr. Google 😣

We all do it.  Google that symptom or health condition and more often than not, it makes us worse.  The health anxiety racks up ten-fold and we end up thinking we are knocking on death’s door.

I am a prime culprit, or at least I was until very recently. 

I developed bowel disease 35 years ago when my daughter was 2, I had an ileostomy when she was 4.   In those days there was no internet of course and so I was often found lurking in WHSmith trying to make sense of my disease in medical books.  My consultant found out about this and told me off, telling me to leave the doctoring to the doctors.  Good advice but I needed reassurance he couldn’t give so I looked elsewhere.  I didn’t find any reassurance of course, in fact, I found lots of seriously scary possibilities of what may or may not happen to me.  Most of them didn’t happen but the worry seed was planted.

Fast forward thirty years when a hysterectomy perforated my bowel.  My well-behaved long-standing Ileostomy for Crohns colitis, paled into insignificance as I was introduced to a new medical nightmare – Enterocutaneous fistula.   Cue Dr. Google.  This was a big mistake as I read about terms like ‘catastrophic surgical outcome,’ ‘high likelihood of morbidity’ and basically story after story of shattered lives.   In a way what I read was true; it has been life changing and parts of my life have been completely shattered but I’m not sure reading about it in advance helped in any way.  The saying ‘just as well we don’t know what’s in front of us’ rang true. 

Five years in, I’m still here, my one stoma bag joined by another two and I’m muddling on.  There is lots of happiness in my life, like the birth of my two grandchildren, to help me through.  Watching my daughter blossom into an amazing mother and my nephews growing up into considerate young boys, fill me with joy.  But I still googled…

A few months back I had gallbladder pain and seriously high liver function blood tests.  Following the perforated bowel, I spent many months being vein fed and gallstones is a known complication.  I had a procedure called a MRCP which is basically an MRI of my gallbladder which confirmed – gallstones!  Some had found their way into my common bile duct hence the pain I was experiencing.  My consultant ordered some specialised blood tests to rule out ‘some other conditions’ and again the anxiety started and again I turned to Dr. Google to see what it had to say. 

I was soon reading about Primary Sclerosing Cholangitis (PSC) or another condition Primary Billiary Cholangitis (PBC), which filled me with dread.  It seemed my remaining life would be one of illness and severe itching with the only cure being a liver transplant.    I had the symptoms; I did itch occasionally, I was always exhausted, I did have upper quadrant pain and those elevated liver function tests now made sense.  Plus of course I’d had inflammatory bowel disease which was another big risk factor.    I was doomed, my anxiety sent my head into some kind of lock down and every thought was overshadowed by very black thoughts.  My ipad was confiscated by my long-suffering husband but that didn’t last as my search for reassurance continued in vain.  I joined forums, I educated myself but did it actually help me – NO.

I had a phone-call today to say the blood tests were fine, there was no evidence of PSC or PBC.  I would need a procedure to remove the gallstones and I go back after Christmas.

Another two weeks of my life whereby I have been completely crippled by anxiety because of Dr. Google, now known as Dr. Death, in my house!

Google is great for many things but if, like me, you have anxiety issues, I would strongly repeat what my consultant said 35 years ago, leave the doctoring to the doctors. 

A little knowledge is in my case a very bad thing.

Revolving doors ………..

So ( have you noticed how everyone starts a sentence with So these days…..). I have seen some new consultants and they didn’t write me off – hooray! It’s been a year of more ups and downs. The fistula has been its horrible self, sat on my tummy keeping control over my life. I know without it I’d probably be dead but I don’t like it, I never have and never will. When you have a fistula, your immune system shows off a bit and goes on ” HIGH ALERT “. It knows there’s something weirdly bad going on and it wants to fix it but the demon fistula has other ideas. So instead of healing the unhealable, your immune system picks on something else, in my case this time it’s my eyes.

There are many eye problems linked to inflammatory bowel disease but as usual my diagnosis has not been straightforward. It starts with a red eye, nothing too bad but as the inflammation builds it gnaws away at your eye causing the most horrible pain. Almost like toothache but in your eye, pain that makes you want to go and lie down in a dark room until it passes, possibly forever. The first bad attack came just after Christmas and it’s been lurking all year. So the first port of call is the optician who is these days like a GP for eyes. He or she decides if it’s bad enough for you to go to hospital. The first 6 or 7 times they said no, but then changed their mind so off I went to the emergency eye ward once, twice, several times to be met with different diagnoses by different doctors. Steroid drops are the first treatment option but after a few episodes they become quite twitchy and started telling me in graphic detail about the side effects like glaucoma and cataracts. They also feel it’s all linked to the fistula and until I get that sorted, my eye problems will continue. “But I can’t get it sorted”, I explain “as last time it nearly killed me”. I’m then met with a blank face and a promise to write to my Gastroenterologist again……….

The two possible diagnosis of the eye condition are either Episcleritis as explained here –

Episcleritis is a benign, self-limiting inflammatory disease affecting part of the eye called the episclera. The episclera is a thin layer of tissue that lies between the conjunctiva and the connective tissue layer that forms the white of the eye (sclera). Episcleritis is a common condition, and is characterized by the abrupt onset of painless eye redness.

Or Scleritis which is more serious as explained here –

Scleritis is a serious inflammatory disease that affects the white outer coating of the eye, known as the sclera. The disease is often contracted through association with other diseases of the body, such as granulomatosis with polyangiitis, rheumatoid arthritis or Chrons disease.

Because of the eye problem it got the bowel bods thinking maybe it was Chrons after all – if this was the case then maybe they could give me some nice drugs to change my life and make me well again. If only things were that simple…….some of the drugs used to treat Chrons are actually a form of chemotherapy and have hefty side effects. They don’t dish them out willy nilly and in order to decide if they can try them on me, I need to have a flexi sigmoidoscopy which is essentially a tube up your bum. The reason for this is to try and get some biopsies of the bowel to see if they can get a definitive diagnosis of the inflammation in order to decide if there is any suitable medication. I’ve had this procedure done many times before but always under general anaesthetic. This doctor however wants to do it with sedation as he needed some resistance from me ie when it hurts I tell him to STOP. Now that sounds horrific enough but he then explained that one of the risks of this procedure is ………….perforation. As you can imagine this totally freaked me out as it’s a perforation that has caused me 5 years of absolute misery and has nearly killed me three times! I realise they have to tell you all the possible complications but when you’ve been through what I’ve been through, it made me very nervous. Problem is without the procedure we are stuck as they can’t prescribe anything, I said I’d think about it ………..two days after that appointment I saw my top consultant in the University Hospital and he felt that the sigmoidoscopy was a very bad idea so yet another conflict that I’m stuck in the middle of.

So almost five years on, I’m still struggling with my new body part, as much as it’s stopping me from dying of sepsis, it causes many problems I could really live without 😞

Number of months since this all started – 57

Number of operations since this started – 4

Number of near death experiences since this happened – 1

Number of times I’ve cried in front of my consultant-lost count

Number of times my consultant hugged me – lost count

Number of times I dreamt my consultant has retired and no one will treat me – recurring

Number of social occasions I’ve missed-lost count.

Number of times I’ve taken to my bed in the day – numerous

Number of times I split with my partner because of the stress-several

Number of family holidays I’ve cancelled-3

Number of friends and family who’ve dragged me out of the pit of despair – 2

Number of months until this is all over-who knows?

Number of positives in my life – lots and lots ❤️

Winning or losing – #winning

Sending love and hugs.

Christmas wishes

It’s been a while ……….I decided to stop blogging as I think I was upsetting some people because my fistula story is quite arduous. I still speak privately to my followers and we support each other through this journey, I have made some good friends xx

So it’s almost 4 years since my fistula journey started. It’s been a very long road, full of ups and downs, an attempted repair nearly killed me, I’ve been to the top man in the country and yet still no answers are in sight, this is it, I’m probably stuck with it. I don’t want to risk more surgery and lose what I have. I can eat and drink and do pretty much all the important things so il settle for that. More surgery could a) kill me b) mean I end up on TPN permanently 3) cure me but for now no surgeon has convinced me that they can fix me so I will probably live with it, for now. My husband is opposed to me having more surgery, I don’t think he’s ever really recovered from the events of May 17.

It’s been an ok year apart from my beautiful little baby granddaughter getting sick, she is fine now but it was a difficult time for us all. I’ve made a few good friends this year who support me day and day out and I’m so grateful for that. I have a scan scheduled for the New Year and I’m being transferred to another expert to see what she thinks of it all.

In the meantime I’m closing my blog and would like to wish you all a Happy Christmas and a healthy New Year 🎄

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.