Fundraising and Research Projects

Apart from just raising awareness, the other part of the Well A.R.D group is dedicated to fundraising. So I thought todays post I would concentrate on this and tell you all about the research program that the money will be donated to 🙂

I did a tonne of research over about 6 months, trying to find a project in the UK that focuses on Adhesions/Adhesion Related Disorder. This turned out to be a lot harder than I ever expected, but then it just goes to show WHY there is such a lack of knowledge on the subject! I emailed every hospital I could find, contacted the Royal College of Obstetricians and Gynaecologists, even emailed the Health Minister and not one of them could provide me with any information of such a thing. In the end it actually turned out that the simplest contact was to be the most useful! I emailed my own consultant, Mr Guyer, at the Queen Alexandra Hospital, Portsmouth and explained what I was looking for. He gave me the contact information for a lady called Ying Cheong, who was previously a  trainee of his. She had gone on to work at the Fertility Unit at the Princess Anne Hospital in Southampton. She had become a Consultant in Obs and Gynae, as well as Senior Lecturer in the same subject. She was now leading a research program at the hospital into Adhesions.

I contacted her straight away to explain what we were trying to do and to see if she would be interested in getting involved, or at least letting us make donations.
She was so lovely!! and more importantly willing to help in any way she could, as well as being more than grateful to accept any donations that we wanted to make.

She then went on to send me the full outline of the research that was currently being done ( you can find this information at the bottom of this post).

It’s mad that there is not more research going on, BUT it was also very relieving to find that there is at least SOMETHING being done. If we can help in any way, then that’s exactly what we will do! At this time we haven’t started the fundraising, as we have been concentrating on setting the organisation up first but rest assured once that has been done then we will be pulling the big guns out to raise as much as we can!

Here is the link to our Facebook page with all the research information: https://www.facebook.com/groups/WellARD/561866957213276/

 

***If anyone would like more information about this project, research or anything else Adhesion related please feel free to contact us at: adhesionawareness@gmail.com***

 

 

 

 

Guest Blog: Working with ARD

Today’s blog has been written by fellow ARD warrior, Gemma, about her experiences on living and working with adhesions, and the problems that are faced in the workplace……..

I’m 34 and suffered with chronic pain for 14 years on and off (had some surgeries which brought temporary relief from pain). This pain is caused by internal scar tissue (adhesions) which are as a result of numerous abdominal operations (7 in 14 years).

I work as a medical secretary within the NHS, so you would think that they would be supportive of someone with a chronic illness, especially of someone who is wanting to work. But in fact, recently I have found the opposite to be true.

People ask me why I continue to work when it’s such a struggle for me every day. And wouldn’t it be easier to give up work and claim benefits? My answer is simple, I love what I do, it keeps my mind active even if my body isn’t. It also distracts me. I’m not sat at home 24 / 7 thinking about my pain or getting depressed about the things I cannot do.

The problem I have though is the Sickness Policy that the NHS uses. Allowing only 3 periods of sickness in 12 months (this being 1 day or 1 month, either is classed as a period of sick). Should this target be reached then you are progressed through the “Sickness Management policy”, which they claim is there to offer support, where in reality it causes more stress, and as anyone with chronic pain knows, the more stress you experience then the higher your pain levels increase.

Another part of this policy is the long-term sick, so if you have more than 4 weeks off, once again you are progressed through this policy.

I recently had major surgery and was off work for 4 months to recover, I was progressed through stage 1 and 2 of the policy and then informed that if I did not return to work the following week then I would be progressed to stage 3 of the policy and dismissed.

This sounds all very unfair but this is a nationwide policy within the NHS, to bring down sickness levels and thus improve work attendance, however, people are being dismissed for being off sick and this is now causing people to go to work when they are still unwell, creating a fresh set of problems.

Because I am stubborn, love my job and refuse to give up, I am fighting this and making my voice be heard, not just for me but for everyone who has been unfairly treated through this policy.

I want to work, yes its a struggle and I know there will be a day when I can no longer work, but I want to carry on as long as possible. Surely there should be support for people like me, who want to work but may need the occasional day off because the pain gets too much. I’ve been told I am unable to use annual leave for these day because then my sick cannot be monitored. Sometimes it feels like I am talking to a brick wall.

Although chronic pain is classed as a disability, because it’s not visible and because it’s not life threatening, it seems that many don’t think allowances need to be made.

I’m not asking for anything unreasonable, I’m not asking for endless days off sick, but surely employees should be able to take time off work, if genuinely unwell without fear of losing their job. Especially within the National Health Service, an institution that is there to improve people’s health and general wellbeing.

Through The Keyhole

With adhesions, there is only 1 definitive way to diagnose them. They won’t show up on ultrasounds, or any other kind of scans. Blood tests and urine samples won’t give any answers. No examination either. So the only way that will diagnose 100%. Surgery!

A laparoscopy is an investigative surgery, nowadays generally done through keyhole procedure. What does that mean in layman’s terms?? Well here’s a rough guide to adhesion surgery;

Keyhole surgery involves having 3 small cuts made, as opposed to the olden days when they would cut you right open.  The cuts are roughly an inch wide, if that! This is good for a few reasons;
1) You are left with minimal scarring
2) The healing process is much quicker and safer
Once these incisions have been made, they then fill your abdomen with gas. This gives them room to see what they are doing, and more room to move about. The down side to this though, is the aftermath. The gas goes in…….so it has to come out! For a few days after you do have the constant farts! It can also make you feel quite uncomfortable, and almost like you have indigestion. One thing I found that really helped with this is flat lemonade. I’m not sure how or why it works??? But it does lol!
Ok, where was I? After your stomachs been inflated, a camera is then passed through into your abdomen. This is when they have a good look around, and how they can see if and where you have any adhesions. 9 times out of 10, if they are found, the surgeon will remove them if possible at the same time, instead of leaving it to another operation. For any surgeon though, this is a very time-consuming job. I remember being told before one of mine that I should be in theatre for around 45 mins. This was a 7:15 am. I remember looking at the clock when I was brought back up to the ward and it was 11:45. This gives you a rough idea of how long it could take! It’s a very fiddly job and as adhesions can be stuck to pretty much anything, a good surgeon will take their time, as they don’t want to damage any other part of you, or any other organs.
Nowadays, there are now ‘Adhesion Barriers’ available and are used once the adhesions have been removed. This is a liquid that is left inside your abdomen. If the adhesions regrow, this barrier coats your insides and is meant to prevent any sticking, which is what causes the problems. Unfortunately they are not 100% successful yet.

So this is a rough idea on how adhesion surgery works. Any kind of surgery can be extremely daunting and scary, especially if you have no idea what’s going to happen.
I have been pretty lucky that my consultant went through everything with me before hand and told me exactly what was going to happen, yet I know that not everyone is that lucky and can be chucked in at the deep end, with no explanation what so ever.

***I would like to state that I am not a Doctor though, and have no medical education. This information has been provided from my own experiences. Every surgery is different, so this should not be taken as set in stone***

Introduction to my book…..

After a long think, I have finally decided to put my story down on paper, and write a book! There is only 1 other book in circulation, that I know of, but it has been written by the parent of an ARD sufferer. So it’s about time that there is something from a ‘warriors’ view, something that tells it exactly how it is!

It may take a while because I want it to be perfect and if my posts on here are slightly less, it’s only because that’s my main focus at the moment. I will do my best though, to still be posting regularly.

I have been writing for years now and have found it to be very therapeutic. If I’m having a bad pain day, or just feeling down, writing can help to get all the emotions and frustrations out, and it really helps. Everyone has their own way of dealing with things, and this is mine.

The feedback I have had from this blog so far though has been amazing! The comments have been humbling! and the support has made me realise that a book may actually be possible.

So thank you to everyone who has been reading and given me such lovely comments and for filling me with positivity!

Here is just a very small introduction that I have written so far…….

When you’re a child, the world seems such an exciting place. Life has endless possibilities. You are full of hopes and dreams, so many ambitions that you’re unsure of even where to begin!
You’re protected by loved ones, from all the bad that surrounds you. Not once, though, do these dreams ever feature pain and illness.
This was me. I was an average young girl. My priorities were my friends, what tunes were on the radio. My family drove me mad, but I still loved them to bits.
I was happy.
So who knew that years later, my whole world would be turned upside down by an ‘invisible illness’ and it would change the person I was to become. That nothing would ever go as I had hoped or dreamt……. 

Dealing in Love

Everyone knows how hard relationships can be at the best of times. So chuck a chronic illness into it and you’ve got a real challenge on your hands!!
I, myself, have never been married. I’ve been engaged twice but never managed to make it down the aisle.

Now I’m not gonna blame illness on the break ups completely cause that would be unfair, but it has had a big part in a few of my relationships.

The first time I was engaged, the guy seemed to be understanding……to start! But slowly as time went on all I would get was ‘stop being lazy’ or ‘why aren’t we having more sex’, and even, ‘why are you being so boring’ or ‘why haven’t you done any housework’. Even when I was in hospital having one of my operations, I had to stay in for about 4-5 days, and he would come up for maybe half hour to see me in the evening and then tell me he had to get home because there was football on. Yup, you heard that right, football came before me whilst in hospital. Yet a male friend I had, would come and sit and chat to me, bring me up anything I needed. This was a man who had no need to do this, yet he did it out of kindness.
Now this isn’t just an ex bashing post, far from it, but I want to point out how ARD can affect relationships. In the end it was all too much, being bribed with money to do the housework, cause he thought I just couldn’t be bothered was the final straw! That and coming home from hospital after an operation to a flat that looked like a bomb had gone off and being told if I didn’t like it, then I should get on and tidy up myself, which I did. Crawling round on the floor cause I couldn’t walk properly still, just so I could try to tidy up!
Funnily enough though I received a message off this person only a few weeks ago, apologising for not being understanding enough. That he had read my blogs and it had finally sunk in. That he was sorry he let me down.

The second time, again, he seemed so kind and understanding at first. If I was having a bad day, he would run me candlelit baths full of bubbles so I could relax. If I needed an hours lie down, he was fine with it, coming in now and then to check I was ok and that I didn’t need anything. Once again after time though, I would get moaned at if I had a bad night and needed a lie in. I was moaned at for not doing things around the house on bad days even though I would try my best!

When you suffer with a chronic illness, you live with a constant guilt. You feel bad cause although your mind wants to do something, your body doesn’t always agree and let you do those things. What you don’t need is someone making you feel even worse!

Sex can also be an issue at times. Because I have pelvic adhesions, intercourse can be uncomfortable, painful even at times, so most people would understand then, that there are times when sex is the last thing on my mind! It therefore does take an understanding person to deal with something like this.

So basically, if you ever meet someone who does have adhesions, remember it may be a bit rocky at times, but it’s the person you fall for and not their illness. We are not our illness. If you want to be with us, empathy is an ideal trait to have.
Yes it can be hard at times, but I’m sure as hell when things are good they will be awesome!

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!!

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!

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!