Sorry I’ve been away

First off let me apologise for my lack of blogs recently. As with any illness, you have rough times, and unfortunately I’ve been going through my own lately.

My pain levels have been really high, which has meant I haven’t been able to do too much. Also, I have been having to rely on extra painkillers which can make me really sleepy and pretty useless.

It all came to a head, as such on Saturday. With adhesions, depending on what they are stuck to, it can lead to other problems. **WARNING THIS MAY GET A BIT GROSS**
When your bowels are effected this can cause major issues and if a full obstruction occurs, it can even be life threatening. This is why after a week of agony, and not being able to go to the toilet, I was understandably worried. For this reason I called 101, the NHS advice line. The woman went through some questions with me and then told me she would need to speak to one of the clinicians due to my answers. When she came back on the line she went on to explain that an ambulance had been dispatched to me and to sit tight until they arrived. Needless to say, I freaked! Panic and scared do not even come close to how I was feeling, whilst at the same time it was a relief someone was taking me seriously. Doctors don’t like to acknowledge adhesions after all.
The ambulance turned up about 10 minutes later and they came in and started taking my obs. I had low blood pressure (but that’s pretty normal for me), my blood sugar levels were fine but I was slightly tachycardic (heart beating slightly too fast). They put me on gas and air to help with the pain, and made a phone call to the Doctors explaining all this. Because I live on my own they thought it best that I went into hospital so I could be checked over properly, because the chance of obstruction was still a risk. This is where it all went downhill……….

Once I arrived at the hospital my obs were taken again and they were pretty much the same as before. I was then taken through to a corridor…..and left! For about an hour. With no pain relief! Apparently this was the queue for the Accident and emergency Department. I was in agony and hadn’t had any painkillers since the morning, so I assumed someone would at least be along to provide me with something, but this never happened. Finally though I was taken through to a cubicle…..and left again. This time for half an hour or so. Then a nurse came in, just to tell me that she was my nurse BUT that her shift was actually just finished and someone else would be taking over from me! When I’m in pain, I have a tendency to show it through anger. I was in immense pain, and getting angrier by the second!
Eventually a new nurse came in to take blood samples and to get me to do a urine sample. I was then told that the only pain relief I was to be given was paracetamol. Now for those of you who are lucky enough to not have to take painkillers, paracetamol is for mild pain relief ie headaches. Now daily I take Tramadol, which is a hell of a lot stronger, an opiod painkiller. So to be told this, nearly drove me through the roof. If that was the case I would have been better off staying at home and sticking with the stuff I had indoors!!
Because of this I finally snapped and told them this, that I would be better off at home, so would they take the cannula out of my arm and let me go. The nurse advised against this and said she would get the Dr to come and see me straight away. In all fairness he was pretty quick. The Harry Potter lookalike! Was pretty hard to take him seriously, as I swear his voice hadn’t even broken yet!! He examined me and said that my bowels sounded like they were moving, all my tests had come back clear so they were pretty sure there was no major obstruction. I was advised to ‘rest my bowel’ for the next few days and see what happens. This would mean cut down my fibre content as much as possible and eat things, that would be easily digested and that could move smoothly along my intestines and through my bowels. If it didn’t improve I would be best off seeing my GP and getting another hospital referral.

That all happened 3 days ago. I’m still in quite a lot of pain but the good news is that I finally managed to ‘go’ today!! Woo Hoo!!! When you have a chronic illness that has side effects like these, you tend to lose your dignity slightly and become able to talk about these things much easier. It also means that simple things, such as bowel movements become an important part of your life. Pretty sad huh!

So I’m just keeping my fingers crossed that now I have ‘movement’, the pain will start easing off. If not, could be the start of yet another referral journey……..

*Update*

They say that when you have adhesions, they only hurt if you eat, drink, sleep, move or breath………
I would agree with that today!!

The worst thing about the illness is that you never know when it’s gonna rear its ugly head? So the fact I’ve had a good few weeks ( for an ARD sufferer that is ), I’m not impressed that today is not one of those times!!

Stress is never good for anything, but I have found that it’s especially unhelpful in adhesions. I’m quite a tense person……in a body sense. I can always feel how tight I am and have to remind myself to relax. This is just on a normal day for me! It would make sense then, that when you have any other kind of added pressure, its your body that bares the brunt of it…..and in my case my abdomen and pelvis.
After a pretty stressful afternoon and evening yesterday, I woke up this morning to the feeling that my whole abdomen had been stretched! To be honest, this is normally the case, but today, after taking my pain relief and moving about a bit, it hasn’t eased off 😦

It’s so hard to describe the feeling to someone who hasn’t felt it but I’ll give it a go anyway; Imagine you were to wake up and your legs had fused together. Not so much that you couldn’t move them at all, but enough that when you try pulling them apart, you can feel them ripping……..yeah not nice!!!
The internal organs are designed to move about freely in your body, but having adhesions restricts that movement and fuses them together and other body parts. This in turn causes the ‘ripping’ when you move or when the organs have to move, ie due to general body functions.

So anyway, my plan for this morning was to go to the gym. Normally I could handle a certain amount of ‘tightness’ but not when it’s like this ( I’ll be doing a separate blog on Exercise and ARD later on in the week ). That put me at a loss, cause I hadn’t actually worked out what my plans were for after the gym.
Instead I have spent the day trying not to move, trying not to breath and generally trying not to do anything that will make the pain worse……and it’s typical that its blue skies and sunshine outside! If i had a garden I probably wouldn’t mind as much but I don’t, so I’m stuck in my little flat, feeling decidedly sorry for myself!
Anyone who says that they are constantly strong, that they tackle it head on with constant positivity is LYING!!!!! I’m sorry but you can’t deal with every illness or such like without having some episodes of negativity and feeling like ‘woe is me’. We wouldn’t be human if that was the case.

Now the day’s halfway through, and I’m slowly getting some slight relief ( thank god as I need to go get food and toilet roll!!! )
Needless to say, though, that this day has been a right off! Let’s hope tomorrows a better one……and that the sun’s still shining!

Let the haters hate!

When you have any kind of illness, there is always going to be some haters, and with ARD this is no different.
People are unsure of the unknown. It’s human nature. Is this a reason to hate though?

I have suffered for around 8 years now and have come across that type of people who are ignorant to the unknown though, and are not interested in gaining knowledge. Instead they attack! When you’re ill, this is not what you need though.

Invisible illness will always be a topic for haters. If they can’t see it, it doesn’t exist in their minds. I ‘ve had so many people say to me, or behind my back, ‘she can’t be ill, she looks fine’. Just because the outside looks ok, doesn’t mean the insides are the same. I just wish I could show them all exactly what my insides look like and THEN see what they have to say!!
People are cruel though and living with a chronic illness, you have to develop quite a thick skin, or else it will slowly but surely grind you down.
Another typical example is being told I’m a benefit scrounger. If I look ok, then obviously I am, therefore I should be able to work right? Well yes I do claim benefits and I won’t be ashamed of it. Do people really think that we would choose to be ill over going to work? Anyone truly ill is most likely dying to go to work! To be able to do the ‘norm’. To have something to actually do, instead of be stuck indoors in pain! This is the difference between the real ill and the benefit scroungers. The ill WANT to work but can’t. The scroungers CAN work but don’t want too!

It’s one thing to have strangers commenting and making judgements but it’s a whole bigger issue when it comes from people who you think are friends, or even family members!
People I know have made comments to my mum, asking if i have an eating disorder because of how thin i am. My mum will then explain about ARD. That I don’t mind. It’s educating people!
But the worst case I have ever come across is by a ‘family member’ and I choose that term very very lightly, as that person will never be a part of my family in my eyes ever again……
But I have been accused of being on drugs, because of how skinny I am. Anyone who knows me, knows how anti-drugs I am! They also know that I would have a death wish if i was mixing drugs with my prescription medication. When you have any type of bowel obstruction, eating and food doesn’t rate high on your list because of how rubbish it makes you. Plus some of the medication keeps my weight down. Not to mention that when I can I go to the gym…………But no, it’s easier to accuse people of things than actually educating yourself on a persons illness.

EDUCATION! This is the only way forward!

Unfortunately though, there will always be ignorant and nasty people in the world, judging on things they have no clue about and it’s to those people I say SCREW YOU! I’ve struggled and fought and got this far, I’m not letting narrow-minded idiots get me down now.

As Romy and Michelle say
“I don’t care if you like us, ’cause we don’t like you! You’re a bad person with an ugly heart, and we don’t give a flying f**k what you think!!

It’s not all about us!

Suffering with adhesions or Adhesion Related Disorder (ARD) can be a big enough struggle on the patient but it’s not all about us!
The lives of everyone around a sufferer around can change too.
So I asked my mum to write something about how she sees it;

“I am mother of a daughter who has suffered from adhesions for the past eight years. Sarah Emily has always and will continue to have my total support. Over the years, I have gone to doctors appointments, hospital appointment and all her surgery. Every time, after an operation, you think, yes , this will work this time only to be disappointed.
I can’t even imagine the constant pain that she has to endure, daily, the painkillers she has to take which don’t always work and wonder, is this my daughter’s life for the rest of her life? Should someone be accountable for what has happened to her as she got an infection after having her appendix removed for no reason? Mr Guyer, her consultant, has always given Sarah the utmost care and unwavering support.
I have an amazing daughter for who life is tough for her but deals with this, stoically, daily. People judge her, your too skinny, other days her stomach is so swollen and she is in so much pain.
It’s an illness that no-one can see, on the outside, she looks okay.
I don’t think there is enough information to be had to understand A.R.D.
I will continue to be there for Sarah, through the good and the bad times because this is a debilitating illness and I feel that it’s all I can do.
But as a mother, all I want to do, is take it all away for her.”

When I read this, I won’t lie, but it made me cry. Why? Because I felt so guilty! Sometimes we forget that it doesn’t just affect us but also everyone that cares about us too. They are the ones that sit up with us night after night when the pain’s so bad, they are the ones who attend the doctors and hospital appointments with us. They hear the nasty comments that are made about us ‘faking it’. Although they may not have the physical pain, the mental and emotional strain on them is just as tough. Having to be the strong one whilst watching someone they love curled up in pain.

So this is dedicated to all those who have stuck by us, helped us out and been there through thick and thin! It’s those people that mean the most and help us get through each day. We couldn’t do it without you, so this is a big THANK YOU to you all out there!

You are our rocks!!

xxx

Pack up your troubles

With the sun shining outside, it got me thinking about summer and summer holidays. That gave me the idea for today’s blog………..

Everyone loves going on holiday! But if you suffer with adhesions, or any chronic illness, the lead up to it can be a bit of a nightmare.

When you should be worrying about which bikini to pack, instead you’re worrying about which medications you need to take. That you have every one possible that you may need, in any situation. Talking of bikinis, there are some out there who have more visible external scarring from surgeries, so it’s not a case of what bikini, it’s a case of what can I take that will cover up my scars, even if you’re going to the hottest country on the planet!! Do you have all the other ‘remedies’ that you use at home? Hotwater bottles? Supplements? TENS machine? The list is endless………..

Then there’s the worry of what you can and can’t do whilst your away…

But here’s my advice;

As long as you have all relevant meds, ENJOY YOURSELF! ENJOY THE TIME AWAY!

Not a morning person!!

Anyone who knows me, knows that I’m really not a morning person…..AT ALL!! But I bet they don’t know all the reasons why?? It’s not just because my bed is so comfy and I don’t wanna leave it (that’s just a lil bit of it 😉 )

In fact there are a few reasons why;

Medication: 
As with most medications, there are side effects, and one of them is drowsiness. I take Tramadol and Gababpentin daily which are both pretty strong painkillers. Most people would then assume that because of the Tramadol, I’m like a zombie but that’s not the one that causes my morning problems. Gabapentin is the culprit! If you have ever taken it, at night, you will know how hard it is to wake up the next day. It’s a job to open your eyes, let alone even get out of bed!!

It is mainly used in epilepsy, but was discovered to be good for neuropathic pain.  I find it does help slightly, though nothing will ever get rid of the pain completely. Tests were done on this medication regarding sleep, and it has shown that is does improve sleep efficiency  AND ‘decreased wake after sleep’ and ‘ decreased spontaneous arousal’.

So it has its good and bad sides. Does help you sleep when you’re in pain, but it’s a nightmare when it comes to waking up!

Pain:
I guess this is a given, considering its a chronic pain illness, but mornings are 100% the worst time of day for me!

I am only 29 years old, but to see me first thing, I look like an 89 year old lady! I walk hunched over cause it hurts to stand up straight until I have had my morning painkillers. As I mentioned earlier, my bed is oh so comfy, after I purchased a memory foam mattress, and a memory foam mattress topper (may seem slightly pointless to some, but don’t knock it till you’ve tried it). This still doesn’t help completely though, I still wake in the night with awful pelvic and abdominal pains. By the time I do get up, I’m guessing, the night’s painkillers have worn off so I can barely move.

So if you ever expect to see me do a ‘Sportacus Jump’  outta bed first thing, then you’re gonna be waiting a loooooooong time! (google LazyTown if you have no idea what I’m talking about lol)

Mood:

You’re probably thinking ‘Well doesn’t everyone have this problem’? Trust me it’s not just a case of not being in the mood to get up! Imagine waking up, in pain,knowing that you had no plans for the day and that even if you did, the pain was too much to even stick to those plans. That there are things you really want to do, but you know that your body won’t allow it. It’s a pretty depressing thought.

I’ll admit there are days i think ‘Is there any point’? and will turn over and just go back to sleep. Not the best thing to do, trust me, but it is hard. It can take so much motivation to get up!

 

So if you know someone with adhesions who isn’t a morning person, hopefully you’ll understand why now 😀

 

 

My Story

My name’s Sarah-Emily and I am 29 years old. I’ve suffered with adhesions for the last 8 years. Here’s my story……

I was admitted into hospital in 2005 with abdominal pain. Tests were run and the Drs were not 100% sure of the problem and decided that it seemed most likely to be a problem with the appendix. The day after admission, I had surgery to remove my appendix. As it turned out the appendix was fine, but the blood tests that came back after the surgery was performed showed that I had an extremely high CRP level (signs of infection or inflammation). Never the less, I was sent home a few days later and told I would be fine.

A few weeks later I was readmitted to hospital where my CRP level had risen to 147, which in medical terms, is very high! I was put on 48 hour IV antibiotics and once those had finished was sent home again.

My pain continued and I kept going back to my GP. At this point my CRP level has risen even more, to 157. Because of this I was referred to a gynaecologist, who was sure that all the problems that were going on were post-op related.

For the next few months, I was back and forward to my GP and to the hospital, with nothing getting rid of the abdominal pain. It was then decided that Irritable Bowel Syndrome was the problem, even though a sigmoidoscopy (camera up the bum) showed that there was nothing abnormal.

In 2006, I finally convinced my GP to send me for an ultrasound scan to put my mind at rest, and this showed enlarged ovaries and an irregular shaped cyst, 5cm wide. The consultant told me it could be 1 of 2 things.

1. an average ovarian cyst

2. pelvic adhesions following having my appendix removed.

A few months later, I had a laparoscopy to remove whatever the ‘thing’ was. When I was coming round I was told there was Good news and Bad news. The good news was that there was no ovarian cyst. The bad news was that the irregular lump was actually inside my fallopian tube and it had to be removed. My right ovary and tube were buried beneath adhesions and stuck to my pelvic wall. These adhesions were removed and everyone prayed this would be the end of it!

Unfortunately this wasn’t the case.

Over the next 5 years, I had another 4 more surgeries to remove adhesions from my pelvic area, but none of them have seemed to get rid of them completely.

As a result of all this, though, I’ve has now been told that conceiving naturally will not really be possible and that if I want children, it would have to be through IVF.

I currently have to take Tramadol and Gabapentine daily for pain relief, although there are days that even this does not get rid of the pain.

Drs have now said that as they don’t know much about adhesions, that it is now a case of Pain Management for me instead of trying to get rid of them.

So, this is my story, and the reason behind my awareness campaign. Everyone, regardless of gender, colour, religion, is at risk of developing adhesions after any type of surgery. Unfortunately, when your signing the consent form and told of the risks involved, this is one thing that is NEVER mentioned! So let’s raise awareness everywhere and get Drs to take the condition seriously!