Personal Blogs

My Complex Health

I’ve had chronic health conditions for just under ten years now and as time has went by, I’ve been able to sit and reflect on my experiences and journey as a patient with complex health.

My journey started in 2012 when I was diagnosed with Crohns Disease and Ulcerative Colitis. When getting a diagnosis for a chronic illness, you will have different tests done to determine the outcome of diagnosis and the usual standard practice tests will be blood tests and typically a scan of some sort. So what is the issue?

You’ve gotten the tests done so surely this good, right? Wrong. Many patients who are complex first find out this issue when they are really, really unwell and somehow bloods come back within normal ranges and tests such as an ultrasound imaging comes back clear. They have all the symptoms of something being wrong but cannot seem to get the right answers. This was very much the case for me until I had my first Colonoscopy and was diagnosed with Crohns Disease and Ulcerative colitis as well as biopsies being taken during the colonscopy and sent away to the lab for analysis. I also have had numerous MRI scans and CAT scans and they can be a hit or a miss with accurate results. This leads to extreme frustration as you know you are getting worse by the day but health professionals say “your bloods are looking good so thats very reassuring!” When in reality it isn’t!

So, where do you go or what do you do? That’s the next part of your journey and certainly what I have had with mine. You go back to basics by writing down your symptoms, some doctors may trial you on medications to see if your symptoms lessen, worse or stay the same or organise a scope to look inside your bowel. Of course it isn’t always so simple with many complex patients getting doctors who plain blank refuse to take any illnesses into consideration and send you on your way. I havent had that often but I have had some doctors be this way with me, especially old GP’s in the past.

The only advice I can give is to request to see another GP or consultant – as a patient you are entitled and within your rights to do so! Dont give up trying for help for a diagnosis or help with your disease after a diagnosis because of normal results. My other advice would be that when you are an in patient or seeing someone at an appointment, to make them aware that you are complex and that you are unfortunately, not easy to care for.

Today I seen a consultant I have not seen in years since he had discharged me with good bloods 8 years ago. Its important that when health professionals say your bloods don’t show anything that you let them know that this is actually very normal for you due to being a complex patient and you must advocate for yourself. This helps them, help you. That’s exactly what happened today and he was so lovely and understanding. As I have dealt with normal test results for years, I have always made it my priority to try and remember my own health in ways that many of us would not. This means trying to remember what tests show best results, what medications I respond well to, what tests I have had done and the results of them and in what year they took place. Trying to remember what my levels of blood tests usually come back with and also to remember the cut off number for my iron to hit to be able to have an iron infusion. This is particularly handy when you are in A&E or with out of hours services.

I also have problems with my veins and so have fought plenty with people in hospitals who try to take my bloods in places I know will not give them blood due to scar tissue from a condition that I suffer from known as Bechets Disease. This means I also need particular colours of butterflies (the colours reflect what size they are) and cannula’s due to how small my veins are. Many health professionals become very cocky thinking I am giving them a challenge that they will take on and win when in reality it is to actually make it easier for them and also less painful and traumatising for me!

There are many people out there just like me who go through this, some even worse and don’t have any care at all. Support groups has been the number 1 place for me to connect with others just like me who go through this! Over the years I’ve been able to chat and relate to them but also pick up great advice and know I am not alone. It also helps when I do get difficult doctors from time to time, letting them know that this does happen to many people.

I would love to hear more from people with this same issue and so please feel free to get in touch if this has affected you!

Life With A Stoma, Product Reviews

ModaVi Bag Review

This week I was sent samples of the new ModaVi bags to try from Pelican Healthcare! As promised, I would try them and write my review on my blog as well as sending feedback through the feedback link.

How do they feel?

Honestly the fabric feels amazing and soft, like suede! The flange is also super nice on the skin and very comfortable. They feel very light on the stomach when the bag is full too and the adhesive caused no issues and in fact, felt so lovely to wear around my stoma and on my paristomal skin. They are also fantastic to look at and definitely gives you a lot more confidence!

Flaws?

So for me, I found a few flaws with this bag (this is personal opinion and not the same for everyone!) I really do not like how the opening for drainage is at the bottom. Its really messy and fiddly because in order to clean it fully you have to open it at the bottom then stick tissue all inside a good few times before you can roll it back up again, a similar opening design as the Salts bags. When unrolled to go and empty, there was poo everywhere and leaking out the sides so my fingers got covered every time. I also didn’t like the flappy part at the top of the bag which is used to view the stoma underneath as it dangled around a lot. Super handy though, I admit, for being able to get a good clear look at your stoma and it also folds up for when wearing a Bikini or something similar! I also found that after showering, it peeled away but that could purely be because I am pregnant and have a lot more curve on my paristomal skin and may not be due to the actual flange itself so do bare that in mind when you have read this!

Over all the aesthetic of the bag is perfect and I couldnt fault that at all but practically it just didn’t work for me. The flange is the best part, due to how healthy it made my skin and it just felt so good whilst on!

I still definitely prefer the opening draining design on the sensura mio bags by Coloplast as they have an extra part where the poo runs down and its so easily wipeable and takes a lot less time, toilet roll and no fiddling about what so ever. As always, different bags work differently on every ostomate so please do not be put off from trying them!

Thankyou so much Pelican Healthcare for sending me them and so quickly too! The bags I have left over will be donated to The Jacobs Well Appeal.