I have been patient but is anyone actually going to tell me what Crohn’s is or is Dr Google and Professor Instagram the way forward?

I am irritated. Actually, no I’m not. I’m pissed off!

First hospital admission 8th June, actually call it 9th as it was gone 1am please note that today is 1st August!

If you wish so to recap – here is my blog on that days A&E and admission to the point of first admission.

So, I was admitted, given a bed, told that my bloods were bad and I needed IV anti biotics immediately and a CT scan to see what is going on because my Haemoglobin levels are lower than they would like – aka my blood levels are lower than they would like, where is my blood going? Seems like cause for alarm?

IV anti biotics started and fluids and waited …

Sat/laid around all day Thursday and Friday … well that’s a lie 😇 I did venture outside once or twice to my happy place, actually it was 10 mins 3 times a day I gave myself to escape the stuffiness of that ward – you would get more exercise time in a prison.

You have said all of this, get to the point …

Friday at 4pm I am taken for my CT scan.

About 5pm Dr Yunis comes in … I think Mum is there too …

I like this guy instantly, he has a very easy way about him, very familiar.

He asks, how my Crohn’s has been managed until this point …

My brain … Crohn’s … WTF?

Is that finally my answer and we can all go home and I will stop eating X or whatever it takes to get on top of this?

Yunis skims the notes again, takes a deep breath sits on my bed before talking me through my CT … I have an angry 20cm section of bowel that will at some point need to be removed, this bit of bowel has perforated and is leaking into my stomach – this is where the infections have been coming from.

Yes in all likeliness it is Crohn’s Disease but to truly diagnose that will take biopsies and other invasive procedures that we are likely heading towards naturally.

But for now, the number 1 aim is to get rid of the infection, my body is temporarily sealing the bowel as bodies are just smart like that, IV Antibiotics are started to kick the infections arse and then when that is all set, they will send me home with steroids and make me and my bowels strong, then come back in 6 weeks for for a laparoscopic resection (chop out nasty bowel piece) and then start treatment for Crohn’s … the IBD nurse will be around and talk you through everything.

Not long after, the now all to familiar Dr Sagar appears … I like Dr Sagar, he is to the point. He has caught me off guard on occasion with his abruptness and non sugar coating of certain things – but he is direct, there are no questions around what he says or what he means which for me, being dyslexic and in a position of high stress trying to take in a lot of information (especially in the weeks to come) made it so much easier to digest. (digest … Crohn’s … lol … seriously, everything is shit – double lol – if you don’t laugh you will cry!)

Dr Sagar goes through the same diagnosis with me as Dr Yunis but from an emergency perspective, Sagar, he has his eyes on me this weekend, he is expecting to need to react – Yunis is ideal world, Sagar is prepared for it to become an emergency. Emergency plan, get in there, cut that bit of bowel out, pop in a stoma to let my body heal and then reverse in a few months. (Essentially what he tried to do but my body was not strong enough and full of sepsis when we got there a week or so later!)

So this was 10th June … it is 1st August today …

Here is my timeline –

8th June – A&E and admission number 1.

10th June – Crohn’s first mentioned.

11th – 17th June – Dr Yunis comes by every day.

17th June – Another Dr comes round and draws the below diagram and talks to me for a few minutes about infusions. 🤯

17th June – discharge from ward 12 – following Dr Yunis plan, Dr Sagar is still there ready to go …

19th June – ambulance day – literally a day waiting for an ambulance.

20th June – Emergency Surgery with Sagar – all goes Pete Tong! My body is broken, it’s been through too much, Sagar does as much as he can while trying to keep me alive. So much toxicity in my body that my organs are starting to need support. I finish the day in Intensive Care.

21st June – Night time transfer to Ward 22 – I am a super hero who has bounced back like a trooper I am told.

5th July – Operation number 2 – my abdomen has collapsed 🤮 I know no more or less than this now … at the time I don’t think I even knew or acknowledged that either, i just heard operation.

8th July – Operation number 3 – completion of operation 2, they were unable to close for various reasons, this will be second attempt but i am warned it may be unsuccessful and they may need to try again next week. They don’t need to.

26th July – discharge home with community nurse support.

Monday to Friday from 10th June to 26th July, I count 32 working days, no weekends.

32 working days … and one person spoke to me about Crohn’s, once, randomly, while I was alone and waiting for paperwork to go home. Re reading my own posts, i forgot that I had even had a brief discussion with this Dr and that he briefly suggested operating immediately instead of discharging me, to me this was a passing comment … in reality, if he had given me more than a minute of his time, I might have paid more attention to him but Dr Yunis was there every single day and had my trust and was saying what i wanted to hear, go home. 🤷‍♀️

… if my body had allowed us to follow Yunis’s path, I might be less mad. However that is not what happened, We ended up on Dr Sagar’s emergency plan. I have been chopped up, bits removed and new bits added with a stoma created. My body is literally shitting into a bag (temporarily) because of this disease and a 3 minute conversation that I am not prepared for is all I get? I have a million questions. What does this mean for me? When will I feel like me again? Can I travel? Can I work? I nearly died, how do I know that I am that ill again? What is a flare up? What will it look like? Am I on my fucking own here? Will I find all of my answers on Google and Instagram? Is there anyone out there?!

Repeatedly, i am told that an IBD nurse will come and speak to me …

Repeatedly they did not.

I kept asking the nurses on the ward. I need to speak to the IBD nurse, I thought that understanding Crohn’s and speaking with the IBD nurse were the first steps to getting the actual support I needed in terms of practical knowledge and mental health support. The nurses kept paging them and either getting no response or being told they were busy and would come another day.

Mother gets the number also and is calling the department.

The main issue here is that the ultimate control freak, the one that has made a career out of being in control is completely out of control and that does not sit well with me at all!

I literally do the job I do, because I asked too many questions, my anxiety means that if I am going to an awards dinner I want to know as much as I can before I go … down to the menu 😂 One day my manager got so annoyed with my line of questioning, it just told me to do it myself. That was 10 years ago!

8th July, I returned from surgery to a consent form left on my table … 🤷‍♀️ A while later I asked and was told they had come down and was sorry to have missed me but have left some reading … no they hadn’t, they had left a consent form for something 🧐 err no. You can have my consent when you actually speak to me.

No further attempt was made by the IBD nurse to speak to me.

Mother harassed and the nurses still called/paged the IBD nurses on request 🤷‍♀️ until eventually the nurse for a response … they weren’t coming to see me, they could maybe call me if I really want … they are very busy 😠

Eventually he called on 19th June … a massive inconvenience for him. Recommended that I join *Crohn’s and Colitis UK, spoke should blood tests and stool samples. Started talking about a restricted diet … hold on Dr Sagar told me to eat everything and get my nutrients, my strength and general health up? Oh no you must go on a restricted diet, I will post information to you … I asked if he was going to post to ward 22 as I am still here as an in-patient? Answer, no I will post to your home address. 🤔 So I should ignore until I get home? No you should action now. But how if you are sending it to my house when you know I am in the hospital 🤦‍♀️ and so we continued … I spoke to Sagar the next day and agreed to ignore the IBD nurse and eat cake for breakfast as per Dr Sagar instructions!

Discharged on 26th July … obviously I have been obsessing over my blog for weeks and people have recommended that I look for Blah on Instagram or start a tik tok (still undecided on this one Baggs 🤣). Before I got home, I just wasn’t ready. Gradually as the days have gone on, I have started searching different things on Instagram and being super fricking inspired!!!

I take a look at Crohn’s and Colitis UK as recommended, working my way through the site, I see a recommended Facebook forum appear a few times 😳 I do not recommend. I wake up in this body, in this world, I get no information from a doctor or gastro team, I get no mental health support and you send me to this Facebook forum full of the most negative stories that my newly diagnosed self does not need to see. It’s like 500 ways your life is now over by the people who know from experience. Fuck that. After the ‘describe Crohn’s in one word’ post and the mostly super negative replies and the pile ons to anybody who has the audacity to try and bring some positivity to the question, I left the group.

Nooooooope. You think I don’t have enough to find the negativity in all by myself? 🤣 You think I need the assistance? Nah, I’m cool thanks.

*Heads back over to Instagram to see some absolute bad ass girl on holiday wearing a bikini and a sparkly stoma bag cover to match it. Keeps scrolling and sees person after person, no rose tinted glasses but a positive outlook, this is where I need to be. These are the people I need to communicate with!*

And the straw that broke the camels back, had me ranting like a sailor at 11am this morning, the reason I decided to rage type this and then phone the IBD team tomorrow (and not while so angry today!) is that today I received the below. What the IBD nurse said he would send me on 19th July, in one of those Royal Mail ‘your letter was fed to a Rottweiler’ bags. It is a a couple of leaflets, what is Crohn’s, all about Crohn’s and Colitis and a Food Guide – all generic, covering every different type of the illness and letting me try and figure out what is me and what is not. Oh and two print outs with descriptions of drugs I have never heard of, to figure out the context of by myself … no hand outs here people! Do your homework or get left behind! 🤣

AND if that was not enough … there was also a letter notifying me of my appointment with Doctor X or someone else from the team on 23rd September VIA TELEPHONE!

Recap

10th June – you have Crohn’s

20th June – operation to remove part of bowel and create stoma due to Crohn’s but no one has told you what it means

26th July – discharge from having invasive treatment for a disease that no one has told you about

1st August – bullshit ‘what is Crohn’s’ information pack received

23rd September – Notification of a telephone appointment with consultant. Maybe they will tell me WTAF is going on and what to expect from the future.

Unless it is cancelled of course. Maybe after 23rd September, that mental health referral will have gone through … or probably not.

Thank you, rant over! Now I know what to say to IBD nurse when I speak to them tomorrow.

🌹