So it’s been a while since I last posted on this website. I started doing this blog to help others who might be in a similar situation as I was; having Ehlers-Danlos Syndrome Type 3 (Hypermobility Type) and being unable to eat due to a malfunctioning digestive system.
The reason I stopped blogging is because I felt like there was a lot of pressure right after my surgery and I wanted to concentrate on recovering and learning to eat again. I then started to get involved in various campaigns, which I’m very excited to share with you all! I still decided to keep up using Instagram to update on my recovery, as well as spreading awareness for EDS and ostomies. I have enjoyed it so much recently that my love of writing has come back to me; hence why I have decided I would like to pick up where I left off on here. I have changed the look and even the name of this website as I will be talking about a variety of subjects all linked to do with diversity, body confidence, mental health and body positivity/neutrality – as well as EDS and stomas. I have also added a couple of pages about certain charities and helplines that you can contact or look at for help and information about mental health-related issues. For now, let me just catch you all up on how my health is now and how the surgery has helped me (if you don’t already know!).
Since July 2018, a lot of progress has been made. Before having the surgery, I was unable to eat, on a completely liquid diet of nutritional supplement drinks, taking lots of medication/laxatives and my quality of life was very poor. Now, I am able to eat freely, I take no more laxatives, I am no longer house bound and I take a very small amount of medication; domperidone and potassium supplements. I take the potassium supplements due to the fact that the colon absorbs most of the potassium in the body and so I (personally) need extra in order to stay hydrated.
Staying hydrated with an ileostomy is very important as the colon is no longer in use, meaning that extra electrolytes are needed to keep the body hydrated. You may wonder, why not drink just water? After doing lots of research, it turns out that your body needs a good supply of electrolytes in order to keep everything working properly. If you keep drinking lots of plain water, all of those electrolytes can easily be washed away and you, ironically, end up dehydrating yourself (note: this only implies to those with ileostomies as our colons aren’t there to absorb the water in the body. If we just drink plain water all the time, then we just pee it out!). A big challenge for me, especially in the hot summer of 2018, was to keep myself hydrated. The best way was for me to drink coconut water as the potassium in it helped to keep my hydration levels at their best. It also helped my digestive system work more effectively. This, unfortunately, was incredibly expensive.
Next, I tried using electrolyte tablets high in potassium – this also worked for a while but again, they weren’t exactly a cheap long-term solution. I asked my consultant in London about it and they told me that I can get effervescent (dissolvable) potassium supplements on prescription, called Sando K. I now take two of them in the morning and it works perfectly well and I’m staying very well hydrated.
The only other thing I have been trying to work out is sore skin around my stoma, or peristomal skin as it’s also called. You see, after surgery, the stoma is a lot bigger at first due to the swelling – your body has just been operated on after all, so swelling is inevitable. As the weeks go by, the stoma shrinks in size. Annoyingly (I am sorry if this gets a little graphic but I just want to explain in case anyone else can relate to it!), my skin took a long time to start healing (because of EDS). In between my healthy skin and the stoma, it was just red. I suppose it was just skin but skin that needed time to heal and to grow new layers until it looked normal and like the rest of my skin. I am hoping this all makes sense – my skin is now, thankfully, almost fully healed. If anyone else is experiencing red and weepy skin, then a few things that I have used to help are stoma powder and calamine lotion – just make sure the lotion is dry before you put on the rest of your appliance! I also find ‘airing’ my skin whilst changing my bag helps as it gives my skin some air to breath and heal a little more.
Apart from those two issues, I have had no major problems with my stoma, everything seems to be working fine! With food, I’ve learned how important the art of chewing is. Whilst that might sound stupid and obvious, it’s important to chew properly to prevent blockages, particularly with vegetables, dried fruit and nuts – which I am so happy I can now eat, I just need to make sure I chew properly (not always easy for someone who is a quick eater).
I have learned so much. I am also so grateful for all of the support I’ve had from people, both in person and online and I hope I can continue to help spread awareness and help others as much as I can!
If you have any questions then please don’t hesitate to leave a comment or send me an email via the Contact Form on this website.
Lots of love to you all and I’m so excited to be writing again!