Deep Vein Thrombosis Awareness Month

March is national Deep-Vein Thrombosis Awareness Month, a public health initiative aimed at raising awareness of this commonly occurring medical condition and its potentially fatal complication, pulmonary embolism.

What is Deep Vein Thrombosis (DVT)?

DVT is a blood clot which develops in one of the deep veins in the body – usually in the leg

What is pulmonary embolism?

This is a complication of DVT, where a piece of the blood clot in the leg breaks off into the blood stream and blocks one f the blood vessels in the lung.

What are the symptoms of a DVT?

  • pain, swelling and tenderness in one of your legs, usually your calf (DVT tends to only affect one leg at a tjme)
  • a heavy ache in the affected area
  • warm skin in the area of the clot
  • red skin, particularly at the back of your leg below the knee
  • in some cases here may be no symptoms

What are the symptoms of pulmonary embolism?

  • If left untreated, around 1 in 10 people with DVT will develop pulmonary embolism
  • breathlessness – which may come on gradually or suddenly
  • chest pain – which may become worse when you breathe in
  • sudden collapse 

Both DVT and pulmonary embolism require urgent investigation and treatment.
Seek immediate medical attention if you have pain, swelling and tenderness in your leg, and you develop breathlessness and chest pain.

NHS England

What causes DVT?

  • DVT affects around 1 person in every 1000 in the UK
  • Anyone can develop DVT but it becomes more common over the age of 40

Other risk factors include

  • having a history of DVT or ulmonary embolism
  • family history of blood clots
  • being inactive for long periods – during a long journey or after an operation for example
  • blood vessel damage
  • having certain conditions or treatments that cause your blood to clot more easily eg. cancer, heart and lung disease, thrombophilia, Hughes Disease etc
  • being pregnant
  • being overweight or obese
  • taking the combined contraceptive pill or HRT

So I wanted to highlight this important information because so many don’t know about it till it is too late. After spending time in hospital again, I have been subjected to the daily injections in my tummy and am covered in little bruises which makes it look like I have some kind of weird skin disease, however the importance of these lies close to my heart.

During his most recent hospital stay, Ste was diagnosed with blood clots and is now on a six month course of blood thinners to hopefully dissolve them. This will need checking again later this year, and his treatment time will be extended if need be.

One of my best friend’s, Daniel, has also been diagnosed with blood clots which they have linked to his Crohn’s Disease. In 2016 Daniel supported me through a hard time personally and with my bowel surgery and ileostomy formation. He was then taken into hospital, where the DVT affected the blood flow to his lower left leg, leading to him needing it amputating. I thought I would interview Daniel for this post, so he could explain more about what happened, and why it is so important that people are aware of the risk factors and symptoms of DVT.

An Interview With… Daniel Lee

Hi Daniel, can you give us brief intro about yourself?

I’m Dan and I am 33 from London. I am a Chelsea fan and enjoy going to watch them play regularly. I have also been studying accountancy at college.

What are your diagnosed medical conditions?

I have Crohn’s Disease, a genetic blood disorder and arterial thrombosis. Arterial thrombosis affects the arteries, whereas DVT affects the veins. Arterial thrombosis is apparently quite rare but the doctors have said it may be due to the inflammatory factor of my Crohn’s Disease.

What were the first symptoms you experienced in respect of the blood clots?

One day I was walking down the road and it felt like I had pulled a muscle.I was limping for a few days but didn’t think much of it. Then it got really painful.I was back and forth to outpatient appointments trying to get a diagnosis. They ruled out blood clots straight away.

What tests did you have?

I demanded a scan, so they gave me an ultrasound but only of the veins, not the arteries. I was misdiagnosed for a few months before they gave me an MRI scan.

What happened next?

I was diagnosed with arterial thrombosis. The arteries in my leg were completely blocked. I had 5 operations in the following two weeks, including an artery bypass which worked well for about 6 weeks. One night I woke up in agony, and my foot was freezing cold. I rang an ambulance and after a couple of days of tests was told the only option left was to amputate.

Losing your leg was extremely difficult. Did you get a lot of emotional support at the time?

I’ve been very lucky with the amazing support I have had from family and friends. Some of the amputees I have met in physio have o one. If I was one of them, I wouldn’t know what to do.

Have they linked your blood clots to the Crohn’s Disease?

Crohn’s Disease was a contributing factor to the blood clots, as well as the blood disorder I have.

How do you manage the Arterial Thrombosis now on a daily basis?

I am on blood thinners (warfarin) for life and have regular blood tests to check my clotting factor.

How are you finding life with a prosthetic limb? Looking forward, what are you hoping to achieve now you are healing?

I am back in the gym regularly now and my main ambition is to run the London Marathon, although it may not happen for another couple of years!


A huge thank you to Daniel for answering my questions, I hope you found his story interesting. I won’t be letting him get away with not doing the marathon now either but will make sure I am at the finish line with a pint! I hope this post has been interesting and insightful for everyone. Let me know in the comments below if you knew about blood clots or DVT , or have learnt about it through this post. As always, thank you for reading,

A Smear Campaign

Good morning and happy hump day! For those that don’t already know, this is Cervical Cancer Prevention Week in the UK. The week aims to raise awareness of cervical cancer and the importance of smear tests. I am rather passionate about women taking up the offer of their smear tests as feel prevention is always better than cure. My mum is a smear test screener (she looks at them down the microscope and checks the cells) so have learnt a lot about the subject from her.

What Is A Smear Test?

A smear test is offered free by the NHS every three years to women between the ages of 25 and 49 and every five years from the age of 50 and 64. You will receive a letter from your GP inviting you to make an appointment for your smear test when it is due. The appointment will take about fifteen minutes, however, the procedure is over in under five minutes.

When you arrive the nurse will ask you some basic information and also about your periods – when your last one was, if you have had any irregular bleeding etc. You will be told about the procedure and asked to sign a consent form. You will then be asked to go behind a curtain and undress from the waist down, and then lay on the bed.

The nurse will then join you and ask you to bend your legs and keeping your feet together, lower your knees towards the bed. If, like me, you have mobility issues such as arthritis, please let the nurse know. They are always very helpful and accommodating with me!

The picture above on the left is the speculum. They are either made of plastic or metal ad are used to open up your vaginal canal. This isn’t generally uncomfortable unless you are very tense. It can be a bit cold, but a kind nurse will normally warm a metal one under the tap before using it!

The nurse will try and ‘visualise’ the cervix – that is, have a look and see if they can see any abnormalities in the first instance. Then will then use a small brush, and wipe it around the cervix to collect the cells. This will be popped into a test tube and sent to the hospital to be screened. The nurse will then remove the speculum and you will be able to get dressed.

The Results

The brush which has your cervical cells on will be sent to the hospital where it will be screened. The idea of a smear test is not to detect cancer, although it will do if it is present. A smear test is designed to identify changes in the cells in your cervix which could develop into cancer, therefore a preventative measure.

HPV screening is coming in in the UK and in some areas your smear will be initially checked for the HPV virus. If that isn’t present, you will be sent a negative result and asked to return in three/five years. If the HPV virus is present, your cells will be put onto a slide and sent to screeners who will look at it through a microscope and check for abnormalities.

There are three levels of abnormal cells that can detected before it turns into cancer, and this is the aim of the program – to detect these changes and treat before it gets that severe. Depending on the level of these cells will depend on what treatment needs doing and you may be invited for a smear test sooner than your usual recall time to ensure treatment is successful. You will be contacted by your doctors surgery in the event of an abnormal result.

“I had my first smear aged 25 and had stage 3 pre cancerous cells, basically the next step was cancer. I had them removed and had several colnoscopies which involved a camera up the foof but on my last one got the all clear.. They are so important”

COLPOSCOPY – A colposcopy is a simple procedure used to look at the cervix, the lower part of the womb at the top of the vagina. It’s often done if cervical screening finds abnormal cells in your cervix.

Facts & Figures

TWO WOMEN LOSE THEIR LIVES TO CERVICAL CANCER EVERY WEEK IN THE UK

9 WOMEN ARE DIAGNOSED WITH CERVICAL CANCER IN THE UK EVERY WEEK

I posted a series of polls and posed questions on my Instagram about women’s uptake and experiences of smear tests and the HPV vaccine. 

Statistics suggest that 4 in 5 women currently have their smear test when it is offered. The women who answered my survey were slightly above this rate which is encouraging, although there was still 18% of women who hadn’t had one in the previous three years.

“Never had one! I’m scared if I am honest”

75% OF CERVICAL CANCER DIAGNOSIS CAN BE PREVENTED WITH CERVICAL SCREENING (SMEAR TESTS)

The latest government statistics suggest that 83.9% of teenage girls in year 9 take up both doses of the HPV vaccine. This national statistic is higher than the results from my poll, in which 75% of people offered the vaccine had taken up the offer.

“I always have my smear. The NHS don’t offer anything free that isn’t necessary. Also, all women should have them as a basic form of self care”

The HPV Vaccine

HPV – Human Papillomavirus

HPV is a virus that around 80% of us will have at some point. It is passed through skin to skin contact, and in most cases our immune system will get rid of it.

There are over 200 different types of HPV, around 40 of which affect the genital regions of men and women. Of these, around 13 are linked to cancer and known as high risk. HPV can lie dormant in your system for years so you may not know who you caught it from or when you caught it.

The HPV vaccine is now offered to teenage girls in the UK. It helps protect against two strains of the high risk HPV virus which can cause cancer, and two strains of the HPV virus which can cause genital warts.

FAQ

Does a smear test hurt?

Not usually! It can be a little bit uncomfortable, but should not be painful. Please alert the nurse if you do encounter a high level of pain while having the test as soon as you can. You may experience a little bleeding after the test, I generally wear a panty liner just in case.

“It made me bleed. Was painful but not too much that it put me off. Peace of mind knowing”

What symptoms should I see a GP about?

Symptoms including bleeding after sex and between periods should always be reported to a doctor. They may decide to do a smear test before you are due, just in case.

I had the HPV vaccine and still got HPV. What is the point?

The HPV vaccine currently only protects against two of the high risk HPV strains and two other strains of HPV. Being vaccinated against some of these strains is definitely better than none at all, and scientists are working on the other strains to offer better protection for women.

I am so embarrassed, what can I do?

Remember that nurses are trained to do these tests, and do multiple ones of them a week. For them it is very normal and routine. Explaining to the nurse that you are worried/embarrassed can definitely help, and they will be able to reassure you.

When is the best time to book my smear test?

You should aim to book your smear test for around two weeks after the start of your period, mid cycle. However, a smear test can be booked at any time of the month.

I had her HPV vaccine, does that mean I don’t need a smear test?

YOU STILL NEED A SMEAR TEST EVEN IF YOU HAVE HAD THE HPV VACCINE. This information does not seem to be getting out there,so any girls think they no longer need a smear test after having the vaccine. However, as explained, the vaccine currently only covers two of the 13 high risk HPV strains, so smear tests are still very important.

I have had a fistula and seton in place, and am worried it will hurt more?

This was a question raised on my Instagram stories following my polls. I am not sure of the answer to this but wanted to say – it is still vital to have your smear test so speak to your practice/IBD nurse who will be able to give you more information.

Smear For Smear Campaign (Jo’s Cervical Cancer Trust)

Jo’s Cervical Cancer Trust is the only UK charity dedicated to women, their families and friends affected by cervical cancer and cervical abnormalities. They aim to support, raise awareness and provide information.

Check out their website here

The Smear for Smear Campaign this week will see women all over social media posting pictures with their lipstick smeared. You can join in and don’t forget o include the hashtags #smearforsmear and #ccpw

I want to thank Jo’s Cervical Cancer Trust for the great information available on their website. I have also been sent some fantastic leaflets through the post, and am happy to send some on to anybody who would like to read or who has a method of distributing it, feel free to contact me at thespooniemummy@hotmail.com

When did you last have a smear test? I would love to hear about your experiences, feel free to comment below of you have any advice or questions and I will endeavour to reply to everyone.

World Arthritis Day 2018

World Arthritis Day was yesterday, October 12th.  I have created a video on my YouTube channel to help raise awareness of arthritis and the fact it affects children and young people too.

Please check it out and don’t forget to subscribe to my channel to see more videos from me int he future.

World Arthritis Day | Kids Get Arthritis Too | The Spoonie Mummy Video

 

Baby Loss Awareness Week

#Blogtober Day Eight

Baby Loss Awareness Week starts tomorrow, so I thought today I would share my story with you.

What Is Baby Loss Awareness Week?

Baby Loss Awareness Week is held every year between October 9th and 15th.  It is a collaboration between a number of different UK charities and is designed to raise a awareness of the issues affecting people who have experienced pregnancy and baby loss.Baby Loss Awareness Week calls for improvements in research, care and policy in regard to bereavement support, as well as raising the awareness of it to people needing it.

babyloss

My Experience

My pregnancy with Leo was pretty straight forward.  I experienced some blood loss around the 11/12 week period and a scan identified a collection outside the amniotic sac, which was no danger to him thank goodness.

Deciding to go for baby number two was easy, I couldn’t wait to give Leo a brother or sister and absolutely loved being a mum.  I was lucky to fall pregnant quickly again once we could start trying.  Because of the medications I am on for my chronic illnesses I have to carefully plan this and come off some of them in order to try and get pregnant.

When I started bleeding again a few days before my twelve week scan, I panicked but felt that the problem may be the same as I had experienced with Leo.  I had suffered morning sickness with Leo but this pregnancy had been pretty rough, and I had struggled with the sickness terribly.

My World Starts To Crumble

I was called into the Early Pregnancy Unit at Southend Hospital and given a scan.  I couldn’t bring myself to look at the screen until they told me what was happening.  My world was shattered when they confirmed the baby had passed away at around nine weeks and five days gestation.

They cleaned me up and ushered me into a room with a midwife.  She was absolutely lovely and I felt very lucky to have her support and help.  She explained the scan had shown some issues with the baby’s brain which wasn’t growing correctly.  I know many people do not get a reason for their miscarriage and in some way, felt this helped.  At the time though I remember thinking that whatever the baby had wrong I would have looked after and cared for it.  The midwife handed me an envelope.  Inside , she explained, was a scan photo of my baby.  She explained that she understood I may not want to look at it right then and possibly never would, but she felt that I may want to in the future and suggested I take it with me, which I did.

Decision Time

I was then taken to see the doctor.  Unfortunately my body was hanging on to this baby, even though it had died, and that was in part why I had been so very unwell.  I was told that I could wait and see if a miscarriage would start naturally, but they were pretty against this as the baby had no heartbeat and would continue to make me more and more poorly in the meantime.  The next option was medication.  I would be given a pill to start the miscarriage, and then have to go back for a second one, followed by a scan a little while later to ensure everything had come away.  The next option was surgery, and this was what they felt was best at my stage of pregnancy and for my situation.  They explained that the baby would be surgically removed in an operation called a Dilation and curettage (D and C) and it would be a day case procedure.  I felt like my heart was breaking.  Of course my body wasn’t letting the baby go, I wasn’t ready to let go either.

Surgery

I decided to follow the doctor’s advice and opted for surgery.  I was told to come back the next day.  The rest of that day was pretty much a blur.  I went back to hospital the next day and the procedure went pretty smoothly.  I remember waking up in recovery and starting to cry.  The nurse came over, asking if I was ok.  I told her no, she panicked that something was wring physically, but I just remember feeling so empty.

I was in hospital till the evening as my blood loss was a little more than they would have liked and my blood pressure took a nose dive.  Luckily, they felt I could go home and keep an eye on things myself once it all levelled out.

Trying Again

There were lots of tears and sadness, but I was lucky to have Leo already who helped get me through those dark days.  Deciding to try again is terrifying, but eventually I was ready, and once again, fell pregnant quite quickly.  My pregnancy with Riley wasn’t so easy – I ended up being scanned at 6 and 8 weeks due to more bleeding but luckily my little man hung on in there.  My twelve week scan was an ordeal, I was being sick all morning, partly through morning sickness and partly through nerves, but it went well.

Baby Number Three

Unfortunately, trying for baby number three turned into another year of heartbreak.  I suffered two miscarriages in 2013, both quite early (at 5 weeks and 6 weeks) which happened naturally.  The first one was horrific due to the fact that we were on holiday, so I had to attend A and E at a strange hospital and did not receive an awful lot of support.  They confirmed what was happening and I was sent away.  Things were not passed on to my hospital properly and even though I let them know, I still got a letter a few weeks later inviting me for my twelve week scan.

When the second one started, I knew what was happening and I called the hospital to let them know.  They were concerned about the blood loss as it was pretty bad, but I could not bring myself to go in and have another person confirm another one of my babies had died.

I had very strong feelings about the sex of the babies I was carrying.  I guessed the boys would both be boys and I felt the first two babies I had lost were girls.  I think I had convinced myself I just couldn’t carry girls.  This last miscarriage though, I felt strongly that it was a boy and because of this, all would be ok.  When it wasn’t, it broke my heart that little bit more.  I had a very vivid dream the next night, that I gave birth to a boy and remember waking up, feeling the weight of the baby that had been placed in my arms in my dream.  I know some may not believe in spirits and things, but I truly believe he was coming to me to say goodbye.

Moving Forward

I feel that one of the hardest things to get my head around was the fact that it was like my babies never existed, except for me and their Dad.  We had only told our parents and siblings, as I prefer to keep it quiet until everything is confirmed at the twelve week scan.  I also don’t go shopping until after this date.  After my first miscarriage, I I did decide that I would go and buy a teddy when I found out I was pregnant again.  I still have Riley’s and the following ones from the two babies I miscarried.  Having something physical of theirs in the world helps me remember they were real, and here, even if only for a short time.

There Is Support Out There

I was lucky to have support from my ex husband, who, at the time, was very good.  Many people do not get this, and as there still seems to be this huge taboo in speaking out, have to deal with all these feelings themselves, quietly.

babyloss2

Miscarriages happen to one in four women.  It is so very common, yet so rarely talked about that people think they should just get on with it and cope by themselves.  This is not the case.  There are some great charities to help support parents out there who have lost a baby.  My inbox is also always open should anyone need to talk, and I am, more than happy to do that about this subject as I know not all the people get the support I did.

There are lots of things you can do to help spread the word about Baby Loss Awareness Week and Sands has some great ideas on their website

You can also share this post, or your own story, and add the hashtag #BLAW2018

The #waveoflight will also be happening again on the 15th October at 7pm.  Light a candle and leave it burning for at least an hour as we remember all the babies gone too soon.  Take a photo of your candle and share it on your social media with the hashtags too and show your support.

Thankyou for taking time to read this one.  I am never sure if these personal posts ever some across as well as I want them to!  As I said previously, my inbox is always open so please feel free to message me if you need a chat.

NatalieThe Spoonie Mummy

 

 

#tubieweek – What Is A Tubie?

Good morning and welcome to #tubieweek here on The Spoonie Mummy!  This week I will be posting blogs and videos (check out the YouTube channel for The Spoonie Mummy) all about tube feeding and TPN.

What Is Tube/TPN Feeding?

Crohns disease has wide ranging effects on the body – it is not just a ‘pooing’ disease.  One of these can be malnutrition due to a severer flare, leading to severe weight loss and the body lacking vital nutrients it needs. If the flare cannot be brought under control by medication, and treatments such as liquid diets and supplement shakes are not helping, a patient may need to be fed through other means.

Enteral feeding refers to the delivery of a nutritionally complete feed, directly into the stomach, duodenum or jejunum via a tube.  This can include:

  • a tube that’s passed down the nose and into the stomach – called a nasogastric tube (NG tube)
  • Nasojejunal feeding tube (NJtube) – similar to an NG-tube except that it is threaded through the stomach and into the jejunum (the middle section of the small intestine).
  • nasoduodenal or ND-tube may be placed into the duodenum, the first part of the small intestine
  • a tube that’s placed directly into the stomach (gastrostomy) or intestine (jejunostomy) through the skin of the tummy

Total Parenteral Nutrition (TPN) may also be considered.  This bypasses the digestive system completely and a solution containing nutrients is fed directly into the blood through a tube in a vein.  This will be delivered through a PICC line, a Hickman line or a port-a-cath.

Does This Mean A Patient Is Stuck In Hospital?

Not at all.  Although these kinds of treatments are set up in hospital, patients can be taught how to do their feeds at home when they are well enough.

I Have Crohns Disease – Should I Expect To Have to Go Through This?

I have been suffering from bowel problems for over twenty years but Crohns Disease wan’t officially diagnosed till I was 26 and I have never had to be tube or TPN fed.  It was considered before I had my surgery, but they soon realised surgery and a stoma was needed urgently!  Ste has had to be both fed enterally and with TPN due to his Crohns Disease and his Gastroparesis.

I carried out some polls on my Instagram stories last week to find out about other people’s experiences of tube feeding.

IMG_20180821_052452_609

Twelve percent of those who responded were also currently being fed via  a tube or TPN.  I also posted a question for everyone to answer to find out who had heard of tube and TPN feeding before and 88% of respondents had.

Is This A Long Term Treatment?

Tube and TPN feeding can be short or long term.  Sometimes patients need a boost while a flare is gotten under control.  Sometimes, it needs to be a long term option.

What Other Conditions Are Treated With This Type Of Feeding?

Conditions including (but not limited to) cancer, premature birth, metabolic disease, malnutrition, gastrointestinal problems, genetic syndromes and renal problems may result in patients requiring feeding tubes or TPN.

Emma has Ehlers Danlos Syndrome and shares her journey on her blog.  She recently wrote a post about life, one year into tube feeding which you can read here.

The Pros And Cons Of Enteral and TPN Feeding

How to become a sought-after editor.png

I hope you have enjoyed reading this brief introduction to the world of #tubies!  Please feel free to ask any questions in the comments below and me (or Ste) will endeavour to answer them as best we can.  Obviously this post does not contain all the information as there is so, so much but I hope it gives every one a little idea and sets us up ready for #tubieweek nicely.

NatalieThe Spoonie Mummy

Disclaimer – I am not a medical professional – my blog posts are based on my own experiences of my chronic illnesses, things I have learnt being with Ste and my own research.  Any major issues should be discussed with your own doctor and specialists