Well, what a month! For anyone not following me over on social media, I am now out of hospital, yay!
I was released on Monday 16th March after three weeks in hospital. Although my symptoms haven’t all been rectified, they are a lot better than they were.
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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?
What are the symptoms of pulmonary embolism?
Both DVT and pulmonary embolism require urgent investigation and treatment.
NHS England
Seek immediate medical attention if you have pain, swelling and tenderness in your leg, and you develop breathlessness and chest pain.
What causes DVT?
Other risk factors include
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.
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,
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This week is an annual event which aims to highlight, promote and celebrate improvements in the provision of nutrition and hydration locally, nationally and globally.
I have previously written posts about hydration as this is especially important for us ostomates.
Coping With A Stomach Bug When You Have An Ileostomy
Today I thought I would share some information about the supplements I take to try and keep myself healthy. As always – I am not medically trained and this post is based on my own research and myself. Please ask your doctor for advice on your own situation and needs.
I regularly take supplements – both prescribed and over the counter to help give my body a boost. I have two auto-immune diseases and take medication which lowers my immune response. Crohn’s Disease also makes it difficult to absorb everything you need from food, and you often have to get these levels tested followed by treatment if they are low. I have written a list of nine supplements I take regularly and how they help me.
NHS
Calcium has several important functions.
These include:
– helping build strong bones and teeth
– regulating muscle contractions, including your heartbeat
– making sure blood clots normally
This is one I am prescribed by my doctor as I am on steroids. Steroid treatment can cause thinning of the bones so you are given a calcium tablet to take alongside them, along with Vitamin D to help regulate it.
NHS
Vitamin D helps regulate the amount of calcium and phosphate in the body.
These nutrients are needed to keep bones, teeth and muscles healthy.
(AD ] gifted previously but not for this post)
I have written an in-depth review of this for A Balanced Belly which you can read here.
This has been the only type of iron that I have used and noticed a difference in my levels with, that hasn’t involved going for hospital infusions. I am, unable to take iron tablets due to the effect they have on exacerbating my Crohn’s Disease. I found similar with the liquid iron which is supposed to be easier on the digestive system. Even though I try and eat an iron rich diet, it does not give me enough. The spray is really easy to use and it doesn’t taste too bad! Four sprays inside my cheek and I am good to go for the day!
Check out the spray at Better You’s website
NHS
Iron is important in making red blood cells, which carry oxygen around the body.
A lack of iron can lead to iron deficiency anaemia.
NHS
Vitamin C, also known as ascorbic acid, has several important functions.
These include:
– helping to protect cells and keeps them healthy
– maintaining healthy skin, blood vessels, bones and cartilage
– helping with wound healing
I buy this over the counter and take it as it is good for giving the immune system a boost. I am on a couple of immuno-suppressant drugs and try and think I will do everything to give my body a fighting chance.
Currently something my body is struggling to hold on to is magnesium. One of the best ways to absorb this is through the skin which is why the bath salts are so good. I like the ones from Better You as I notice more of a difference after using them, but you can buy them from places like Asda and Home Bargains. They really help ease my joints and I feel refreshed after having a soak in them.
Better You has a range of forms of magnesium including the bath salts and gels which you can rub into the skin. See them on the Better You website
NHS
Magnesium is a mineral that helps:
– turn the food we eat into energy
– make sure the parathyroid glands, which produce hormones important for bone health, work normally
I buy this over the counter just to give all the vitamins and my iron a boost.
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I was contacted by the people at Precision Biotics about their new product to help those with IBS. I have IBD but when I asked them about what the product was, I thought it would still be a great thing to try.
I find the world of probiotics and digestive heath a really interesting one. Alflorex contains a unique probiotic and in clinical trials has been shown to reduce
I was especially interested in seeing if it would help me with bloating. As possibly the only girl with Crohn’s Disease who has an anaphalactic reaction to Buscopan, I rely peppermint tea which doesn’t always help.
I was sent a sample month’s supply and am pleased to report I saw some great results and would definitely recommend. I felt it really helped my bloating and the pain associated with it. I have even been able to have the occasional fizzy drink without the usual, painful side effects. Due to having a stoma I am not in the best place to comment on unpredictable bowel movements, but if you do suffer from these symptoms, from the results I found with my bloating, I would definitely be inclined to give it a try. It is also suitable for those on the low FODMAP diet.
Visit the Precision Biotics UK website to read more and to shop
Another over the counter one which is just an attemt to build up the whole array of B vitamins in my body.
NHS
Folate is a B vitamin found in many foods. The manmade form of folate is called folic acid.
Folate is also known as folacin and vitamin B9.
Folate helps:
– the body form healthy red blood cells
– reduce the risk of central neural tube defects, such as spina bifida, in unborn babies
I am on a folic acid supplement as I take Methotrexate and this can help lessen the severity of side effects. IBD patients can also become easily deficient in this and so are also given supplements for it.
Another nod to Better You and this time their B12 Oral Spray. I think the way Better You are helping patients by looking at HOW we best absorb the things we need is fantastic. Having certain parts of your bowel removed can lead to you being low in b12 and needing injections. I use this to hopefully prevent that, and it tastes lovely too!
Check out the Better You website for more on this
NHS
Vitamin B12 is involved in:
– making red blood cells and keeping the nervous system healthy
– releasing energy from food
– using folic acid
I hope this post has been helpful and has given you some ideas about things to look into and try. Feel free to let me know anything you recommend in the comments below, or ask if you have further questions and I will try and help.
References
Happy weekend everyone – I really hope you are all enjoying yours more than I am stuck in here.
Unfortunately my potassium and now also magnesium levels are still crashing into my boots so I am constantly having to be hooked up to drips as well as take supplements to keep my body functioning. The last couple of days have been a struggle with my feeling very shaky and that my muscles in my hands etc just won’t cooperate quite properly with what I want from them. The doctors think this is due to the low levels of stuff in my blood and are keeping a close eye.
It looks like I will be having surgery on my stomach this week but the surgeons will be asked to comm Monday and get me on the list as long as they agree with gastro’s plan. Once I know what is going on I will share, but please excuse me for not doing so much – a lot of things are still little mysteries to me too and I need to get my head around the fact I will be having more abdominal surgery again.
Still getting stuck left, right and centre for cannula access, including having another in my feet. My veins just are not happy! I plan on speaking to them about putting a mid line in after the weekend. Although its a higher infection risk, it should be able to stay in place for the rest of my hospital stay and I am currently having daily blood tests as well as the cannula attempts so think this will be a better option. As I am looking at going to surgery, they may be able to put one in wile I am under, and then it is one last thing to worry about following the operation too.
I am trying to eat little and often as any thing too much just makes the pain ten times worse in my stomach. I have a lot of bile green output from my stoma which is also being very sluggish. I am stuck on low residue too and the menu is very limited. It is definitely something I plan on leaving feedback on once I leave.
As some of you know I have been invited to speak at the Ileostomy Association event in Birmingham on March 30th. I am over the moon at being asked to do this and am so very looking forward to it, so hoping i can get out of here in time! I have been posting questions on my Instagram, Twitter and Facebook pages and it would be great for any of you ileostomates out there to reply if you have something to say abut the topics I am asking.
For more information on the event check out iasupport.org/infoday
I have now (up to 11pm Saturday night) been moved 5 times! I am currently back in a side room which is much better as it is quiet and I have my own bathroom. They are monitoring my stoma and urine output so it is really inconvenient and embarrassing whine having to share a bathroom. Also being on almost continuous fluids makes you go…a lot! Hopefully they give me a rest now – I think I deserve one.
Visits from Mum, Dad and Ste are helping keep me going and I am keeping busy with reading, cross stitch and colouring. I have now read three books in here since arriving and am ploughing through four and five (one paperback, one Kindle). I was contacted by the lovely author of Brace Yourself on Twitter abut a review of her book and was so pleased she did – I loved it. I will be posting a full review this week about it so keep your eye out.
Again, I have been overwhelmed by the support and messages and can’t thank you enough. It really helps put a smile on my face when I feel so damn awful all the time!
I’m at the point of losing track of days and it seems to be suddenly flying by. Each day sort of mingles into one as it gets so repetitive and a mixture of tests, medication, pain and sleep.
On Monday I had my first ever gastroscopy test – where the camera goes down your throat to check out your stomach. It certainly wasn’t pleasant but the doctor kept me well topped up with sedation which meant I was pretty woozy and ok. I will write more information about the actual test and procedure once I’m out for people who want to know more or may be going for one themselves as you might find it useful to read a patient perspective.
The scan went ok and they rules out any ulcers etc on the inside of my stomach which is good. I was diagnosed with GERD and have a ‘lax scphincter valve’ but I already know I suffer acid reflux so this wasn’t surprising.
My stomach is still pretty distended and painful so the doctor is still on the case and may still want to bring the surgeons in for a look.
Nothing like a stay in hospital for that. On Tuesday I’ve had to go onto a fluid balance and now have to wee and collect my output in pots and then get the nurses to measure it. One saving grace is I’m back in a side room with a private bathroom so no communal toilet. It’s mortifying having to call them and watch them collect it though. They are so good about it but it must be an awful side of their job.
What a day Tuesday was! My cannula had expired and was starting to show resistance when used as well as becoming a bit sore so they took it out. A phlebotomist came and gave an attempt at a new one but didn’t have any luck so called a doctor. He also tried a couple of spots but was unsuccessful so I’m now the owner of a horrible foot cannula. Although it’s a nightmare for moving and things, stuff is flushing through it well so I don’t want to moan.
My phosphates are still low so having to down that lovely drink every tablet round but my potassium now keeps doing the same. I had some put in my fluid bag Sunday but on Tuesday they said it was still very low and I had to have both the drip and a drink of the stuff. Disgusting! Good job we get used to having to swallow these awful prep type drinks a bit really, I think I’ve become desensitized to the whole thing.
Depending on where your Crohn’s is active can also alter levels in your body like this. Where I had the problem prior to my surgery in April 2016 I was suffering from low protein – as the area responsible for the major absorption of that was all inflamed and not working properly. Malabsorption is common in people with IBD so it’s always handy to ask your GP to check these types of thing if you aren’t feeling right. Supplements may be prescribed or things may just need to be adjusted in your diet if possible.
I wish I was more excited about this segment but food has become a bit of a chore to me. Anyone who knows me.knoes how much of a foodie I am but when I eat at the moment it causes more uncomfortable swelling, pain and nausea/sickness. I’m back on straight low residue so no longer have to stick to smooth or runny foods only which is a bit of a blessing.
My mum came to visit while I had my gastroscopy Monday which was a shame as it meant I didn’t get to see her. Both her and Ste stopped by yesterday though – Ste came straight over from the train looking shattered but it was so good to see him. My mum bought me in the pancakes my Dad got for me and they even sent in lemon juice, sugar and white chocolate dipping sauce! They really are the best parents but I’m definitely going to be redoing Pancake Day once I’m out of here! What did you have on yours? Let me know your favourite toppings in the comments below.
Really hoping for home soon so need to get a good plan in place now. I’m very homesick and feeling very meh! Apologies if that comes across as rambling and moaning in this post, my next one will be better (at least I hope so)
