Please note, yes, I have NHS rage … but my rage is at the current state of the NHS not the NHS itself … If you, like myself are bored of my moaning, please enjoy the photo of my dog 🥰
Current Rage
As I have mentioned numerous times, my hair is falling out. What is left is thin old lady hair. I am told there is regrowth starting to come through but I can’t see it yet and this comes from dear mother who didn’t tell me how patchy the back of my head was becoming because it was kinder as I cannot see it … 🙄
So the great hair exodus, I first wrote about on 21st July so maybe a day or two before this began and I spoke to the doctors in the hospital who nodded at me knowingly, as if this was standard and put it down to how extreme my malnutrition was. If it is standard, how about a jeffing heads up, hey?!
Home, – the hair continues to fall. I am on groups on Facebook and Instagram and Twitter and consensus is that this is normal – again – If it is standard, how about a jeffing heads up, hey?!
On all of these forums, my IBD people are giving different explanations as to why this is happening and different ways to treat. Different explanations that they have been given. Hopefully the blood test will show which is mine … 💉🩸
I contact GP, have a blood test, I notice on the for it is marked urgent so should get a quickish answer 🤞
I call, reception says all results are normal.
Annoying, I hoped it would have an easy take a vitamin type answer ☹️
The next day I have a look at my test results on the NHS app to see if it will tell me anything … it does, it says Abnormal results speak to GP … so I call the GP again who can offer me a an appointment for the end of next week 😖
No. just no. My last abnormal blood test led me to an ambulance and loosing half a bowel, shitting in a bag, and loosing half my body weight, plus the bald head and 7 weeks in hospital. So no, I will not wait until next week for an appointment.
I am sure I am repeating a rant here but at what point would they have looked at my test results and contacted me, does abnormal not flag somehow? Surely these come through automated and flagged? No? FFS!
I work in marketing, so why all of a sudden do I need to use my Google Medical degree at every jeffing turn!
Dr Google is on it … probably anaemia which is an iron deficiency. Standard Crohn’s behaviour…
Standard Crohn’s behaviour – A standard behaviour of Crohn’s 🤔 hmm If it is standard, how about a jeffing heads up, hey?! Or even better, here, take a ducking Iron tablet and not loose all your hair?
If only I was having a blood test everyday for 7 weeks … oh snap, I was! WTF!
Now, I am getting angry based on my own assumptions and information found via Dr Google but what is the alternative … 3 months, 3 operations, 1 stoma and 1 bald head and I still haven’t spoke to the Crohn’s doctor about my diagnosis. Dr Google is the only option.
I am waiting until 2pm to get a telephone appointment to speak to a GP about my normal/abnormal blood tests and confirm Dr Google’s diagnosis.
More Rage
Seriously where is my belly button? Why the duck does my stomach look like it does? I know you shouldn’t compare but every other person with the same scar geography as I have, has a clean scar, tidy looking … mine look like this 👇 Not just a ‘scar’ but structurally rearranged.
I appreciate it was an emergency but that is 3 operations on the same hole (a hole that is still fecking open by the way!!) Why at no point did anyone think to tidy it up or more so, why has nobody spoke to me about this?
Why am I having to figure everything out for myself!!!
Where is my mental health referral? I appreciate there is a list and these things take time but at least sent me a confirmation or a letter to say that I am on the damn list. 3 people have referred me, 3 separate doctors so in theory it is in process 🤷♀️ But until then do I plod on, on own? 😡
⚠️ Mo – Rage – It is a lot of 💩
Mo is a dickhead. It has been a shit week with Mo – pun intended!
I just don’t know! It doesn’t work. Again don’t compare … but every one else seems to be figuring it out and I am not, well as soon as I feel like I’ve got it, I don’t again! 🤬
Leak, Leak, Leak, Leak!
Grrr … so basically the base that attaches to my skin keeps leaking so the ‘waste’ is escaping from there rather than into the poochi bag.
Mostly at night time. I already set an alarm for twice in the night to ensure the bag is empty and secure … one of the main triggers for Crohn’s is lack of sleep but Mo is the main cause of this issue!
The stress, anxiety and sense of shame that comes with this is unreal …
- During the night
- The actual leak … 💩
- The 4am clean up operation
- I am unable to do the actual clean up operation myself as I am not allowed to lift/bend/stretch so I have to call somebody else, usually my mum to help me with this.
- Daytime
- If there are visitors round to witness the leak
- The clean up operation
- How far can you go? I went for a blood test the other day and was out for an hour terrified I would leak
- Constant bag changes as the base is leaking causing sore skin
- Work
- I haven’t quite got there yet but I literally cannot imagine going to the office without massive anxiety about all of the above!
- Travel
- Ha!
It is just exhausting. Waking up to the worst case scenario once is horrible, having it several times in a week is truly soul destroying.
I have a theory as to why it is leaking but theory or not I don’t know how to resolve it. 😖
Waiting for a call back.
I am trying so hard not to be sucked into a black hole of depression and to keep positive but none of this is helping 😏
Update **
Just back from the hospital to see the Stoma nurse Debby who squeezed me in to see her before the bank holiday!
She has given me an incredibly old fashioned hospitally number with a belt for support as apparently my stoma is very unusual and one that you only see on the most extreme of emergencies.
Immediately I feel a million times better, I can stand up straighter and the weight of the Stoma is so much lighter. I will see her again next week to make a plan.
But incredibly, I can now see a future with Mo and not just dragging my heals through each day until reversal day 🥰
Now if this damn wound could heal and would someone please give me back my belly button! 😂
🌹
My unwilling journey with Crohn’s Disease 
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