In this next post I’m going to talk about all my medical stuff, in the hope of finding someone, somewhere with the same thing. I’m also sharing this online because I don’t feel like I have anything to hide. I’ve felt almost ashamed or like I’d be judged because of how different my life has become. I’m still the same girl, always with her head stuck in a book, who loves LUSH products, shopping, poetry, notebooks. The same girl who loves to sing along to music that’s too loud and who never leaves the house without makeup.
I have spent hours reading through blogs online trying to find someone I could connect with – a blog that isn’t complaining but explaining how they live with conditions. Those of you who know me personally know that I am very practical and task orientated and I’m looking for someone to discuss these practicalities with.
I was born with a rare neurological disorder (a glitch in my brain basically) which means now I have “degenerative pan gut dysmotility” or total degenerative intestinal failure. I was born completely normal, except for gastric reflux which worsened as I grew older. In January 2015 my vomiting became so bad that I was admitted to hospital for six months. After numerous tests this diagnosis was made.
Nothing from my stomach down gastro wise works very well at all. I can’t eat or drink, and rely on a jejunostomy tube (a feeding tube straight into my bowel). My medications have to be delivered by a syringe driver at 1ml a minute otherwise I can be very sick. My stomach drains through a port on my tube to help stop me be sick (although this isn’t working at the moment so I pass a nasogastric tube NG tube down my nose and into my stomach every night).
The bit that I’m scared to talk about online (my bowel) has been causing me huge problems over the last few months. I am on a large amount of laxatives and have to do bowel care every day. I don’t understand why the bowel is seen as something that no one can talk about – it is as natural as the blood flowing through your veins and the air we breathe. Everyone has to use it in order to live. My bowel causes me tremendous pain – especially at night while on feed (my source of calories). When I go on my feed I am forced to be in bed due to its ill effects on me.
I also have something called POTS (Postural Orthostatic Tachycardia Syndrome). This is a huge factor in my life – and another reason I stay in bed while on feed. POTS means I am extremely dizzy and am prone to fainting. A POTS attack consists of a really fast pulse, much higher than your normal pulse, and very low blood pressure. This happens to me because so much of my blood is redirected to my bowel trying to digest the calories and water that it struggles with. Personally, I go very pale and start talking absolute rubbish because I feel light headed. POTS attacks can happen to me any time and are extremely embarrassing.
I have been diagnosed with chronic fatigue, but not chronic fatigue syndrome. It is a result of everything that happens to me in a day, and the tiredness related to that. I use a wheelchair and really struggle to walk any distance because of this fatigue, my POTS and my pain.
I guess I’ve written this because I’m not scared anymore. People can know. I have wonderful friends and family that help me so much more than you will ever know. I’m not going to sugar coat it – these conditions can leave me miserable and they are degenerative. However, with amazing people surrounding me I know I have so much love and support.
The main reason I’ve written this is to hopefully find someone else to talk to. So if you’re reading this and you have this condition it would mean a lot for me to speak to you.
5 thoughts on “Me. Intestinal failure and POTs.”
I found your blog so inspiring, and just needed to wish you good wishes for the future,sorry that I can’t give any support in any other way!
Hey Hannah, I’m Zoe
Whilst I can’t relate fully to what you have to go through with your bowel and stomach issues and POTS, I’ve had M.E/C.F.S for the past 7 years and if you ever want to chat about the distress and social stigma of having any kind of chronic debilitating illness or disability I’m here x
You are a very brave young lady and well done for reaching out. I don’t have your disorder but have had chronic pain and fatigue from fibromyalgia and HMJS for over 25 years. I used to have pretty bad IBS but it improved when I removed yeast from my diet. However, 3 of our grown up children had vomiting and gut motility problems, extreme dizzines and low blood pressure since they were youngsters. They have now been diagnosed with Myotonic Muscular Dystrophy Type 1, a degenerative neuromuscular condition. Now my husband has also been diagnosed. It’s not the same but some of the symptoms (which are getting worse) are similar so I wanted you to know I feel for you.
I help look after a closed FB group for the Myotonic Dystrophy Group so I just searched POTS on FB There is a group with a lot of members. Look them up and ask can you join. There may be other groups for your other group too. Just type the condition in the search box. Peer support can be amazing.
Keep writing. I am a poet too and I run a few writing for wellbeing classes in the community. I am studying arts in health too. Is there somewhere online to read your poetry?
Hello, thank you for your comment. I will look into the POTS group – thank you so much. I have linked some of my poems to the blog, if you go to the top bar and look across where it says ‘home’, ‘blog’ there should be a link that says ‘poems’. I’ve actually written one about having POTs and about using a wheelchair amongst other things.
Best wishes to you and your family,