“Coping with a long-term condition can have a big impact on your mental wellbeing too – research suggests that people living with Crohn’s or Colitis may be twice as likely to experience mental health problems as the general population.”
Crohn’s and Colitis UK
👆 Well that’s good init!
It really doesn’t come as much of a surprise though. Does it?
Join the queue
I still have not had an appointment with a consultant or anyone who actually knows about Crohn’s Disease. All I know is what o have learnt from Dr Google and the amazing people on Instagram.
My appointment is the 23rd September, my first operation was 20th June … 🙄😡
I have spoken to an IBD nurse on two separate occasions … The first after we finally tracked someone down, who spoke to me on a very high level generic level. The second a few days after the above date for my consultant appointment had come through and my rage had simmered!
Apparently the long wait from diagnosis to speaking to a real life human is normal. There are so few Doctors to see so any patients, plus it took that long to find two appointments so that I could have a 20 minute slot for newbies instead of the standard 10 minute regular appointment. I had already been admitted to hospital by the time I was diagnosed, the only people who have spoken to me about Crohn’s is the surgeons and that was in regards to cutting me open.
So by the time I actually speak to anyone about my Crohn’s Diagnosis to have a real life discussion about what it is and what it means for me and not on a generic level – I will have already have had all of the below 👇
- Diagnosis
- Emergency Surgery to repair a perforated bowel
- Treatment for Sepsis
- A stay in Intensive Care
- Severe malnutrition
- Emergency Surgery for collapsed abdomen
- Surgery to complete and close the above surgeries
- Hair falling out
- Hospitalisation from 8th June – 26th July 2022
- Received a generic guide to Crohn’s Disease in the post
- Received two random drugs/treatments and told to research them …
Hair loss
My hair is falling out. The top of my head and big patches at the back of my head are the most obvious balding patches.
I had very long, thick, awesome hair and to watch it falling out is devastating.
I cannot get my head around it. My cousin/hairdresser came to assess the damage and we went for a much shorter cut. This in itself is not a huuuuuge deal, I was toying with the idea of cutting my hair around the same length around christmas time … we decided to hold off until after the summer because I was having too much fun with my Dyson Airwrap.
The length is not the problem, the obvious bald spots and the thinning is! Every time I look in the mirror, I feel like shit. In the right environments I will be able to style this with a hat but what about work? What about dinner or drinks? Or pretty much any environment that isn’t sat in my garden!
The hair continues to fall … I spoke with the GP and they have requested a blood test, as soon as I can get an appointment for the blood test 🙄 we will see if there is anything obvious that I am deficient in that I can pay attention to that will hopefully make the difference to my hair ☹️
It will sound really silly but my hair is my confidence. If my hair looks good, I feel good. Make up and clothes are secondary, once my hair is already looking good. Right now, whenever I walk past a mirror, I see a sick person … . Seeing this sick, skinny person makes me feel sad, I need to feel like I am moving forward to some sense of normally and real life might return soon or at least I might get a bit of a timeframe as to when to expect a glimpse of that.
I do feel like my GP life has become easier, I have made two calls to my doctors surgery since being home from the hospital and it feels like on mention of my name they are much more accomodating that usual … maybe its just me or maybe my name has a warning note by it! 🤣
I am a big fan of a Dyson Airwrap and could talk about it for a whole post … yes, it is worth the money!
Fear and Frustration
How long will I take to heal … what will be waiting for me when I finally do? My job, how long is too long off sick? What will I return to? As much as people say to take all of the time you need … how long is that? 🙈 I both want to get back immediately because my brain needs some exercise and also acknowledge that my my stomach is an open wound and prone to infection, plus my energy levels are still very low 😖 It would be helpful if someone could please make a rule book for these things!
One of the few pieces of advice I have received from the IBD team so far in our ridiculously brief interactions was to join Crohn’s and Colitis UK … I have, (I am not entirely sure what I am getting from this yet 🤷♀️) and they then tell you to join their Facebook page … DO NOT DO THIS! Oh my god, I was so angry!
As a newly diagnosed person, having had minimal guidance about my specific situation, I need handholding, I need to see some sunshine, some hope, some possibility of a better tomorrow … this Facebook page offers the opposite. It is just dark … I always joke that Misery loves Company but daaaaaamn it certainly found its happy place in this Facebook group. It is like the misery olympics, each person is trying to show how their life is worse than the last persons! Everyone is shooting for gold! 🥇
Instagram is a lighter place, it is people showing just how well they are doing (which also has bothered me as below 🤣) plus tips and tricks to get by, conversation starters and just general community … but no, send us to the bad place 🤦♀️
But even Instagram gives a glimpse into an uncertain future, will I be one of the Lucky Ones who live with the condition have a flare up every so many years that are manageable and generally get on … or the other group of people who literally are unable to work because of it? Is this just the first of many operations/emergencies/hospitalisations? Only time can tell or maybe the Crohn’s consultant can tell and I may have had months of worry for no reason. 🤷♀️
Instagram is usually a positive space for me, an inspiration … but not always. This week two posts particularly stood out to me …
1) a girl 4 weeks after her stoma op, getting ready to go out for dinner looking stunning, hair done, make up nice, cute little dress … my brain started in its usual insta inspired state of wow, look at her. Then it quickly turned into, why can’t I be doing that … my hair has big patches missing in the most obvious of places – on top, there is no hiding it, my skin is dry and flakey and all of my clothes are too big as I am skeletor.
2) a guy 5 weeks and going to the cinema … dude, if I could sit anywhere comfortably for that long I would be happy!! Jeeeez my bony arse would not be allowing for that! Plus, just to stay awake for that long would be huge!
I am 6 weeks post final op (I ended up having 3 operations in 2 weeks), and 8 weeks post the first operation and stoma day – 20th June.
I am done, I want to look and feel normal and go and do some normal things.
I do appreciate that putting myself down and being hard on myself based on what other people are doing is just stupid … but I am bored 😂!
FOMO
🙈🍦
Social Media + Summer = Everyone is Having Fun and Leanne is not.
Holidays, beaches, forests, hen do’s, nights out, days out, bbqs, lunches, dinners, adventures … all the things I am not doing.
In May I was asked a question about September and laughed it off, of course I will be fine by then … 😳 FFS.
Travel
I need to be in Sweden in October, it is really important to me that i go … however … the difficulty is … everything … picking up a suitcase to put onto my bed to pack (not allowed), carrying the bag downstairs (now allowed), lifting suitcase into car (not allowed), taking bag out of the car (not allowed), pulling bag from car to bag drop (not allowed), the walk from car to bag drop /through he airport (may be too far), limiting bag onto scales at bag drop (not allowed) … this trip is beginning to look problematic!
And that’s a work trip … the possibility of a personal trip, please see above!
My plan from day one of this saga has been to find a cottage by the sea that I can take both Cassie and my mum and dad to for a week of chill … as soon as I am well enough to be able to walk the dog on the beach 🏖 …
Negative much?
😂 Yes! This was a negative post … I agree. But these are the constant underlying thoughts going through my brain, ALL THE TIME.
Sometimes I will be grumpy, sometimes I will cry! Crying is a release of pain, anger, frustration … it is necessary and there is nothing to be done, you cannot help, you cannot make me feel better or stop the tears.
Just being there for me is enough and if you want to join me in that moment, in my rage or tears, please do! You are most welcome! 🥰
But I will come through the other side again and I will be ok … what other option is there? 🤷♀️
I must remember, I am lucky to have –
- My family – mum, dad, siblings and partners, niblings, aunties, uncles, cousins …
- Friends
- Colleagues
- My work making my life easy
- … and most importantly, my dog 🐾
🌹
My unwilling journey with Crohn’s Disease 
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