Asking for help should be encouraged and welcomed for those who need it … why is it proving so hard?

Wednesday morning

Today is the day, the follow up with my surgeon to see how I am healing. Hopefully he is happy with progress, however slow!

I wake up anxious, I am not sure how this will go. Will this be a sit and talk appointment or a prod and poke? I don’t want to be prodded at … I have issues with that without any reason. Add in the wound of multiple operations and I really don’t want my stomach poked!

In addition, I am not driving. I would always be early, giving myself plenty of time but Dad is driving which means lastminute.com. 🫣

For weeks, I have kept a note book beside me, scribbling down all of my questions to make sure I do not forget them.

My looooong list of questions include –

• Did biopsy confirm Crohns?
• Why is it taking so long to heal?
• Muscular pains in my stomach the past few weeks
• Taking deep breaths still not easy
• My stomach –
  • Will it fix itself and flatten out
  • Where is my Belly button?
• Can I drive now?
• When can I start PT?
• Iron deficiency, always low, can I take supplements, injections, infusion
• When will stoma be reversed?
• Where are we with my mental health referral?

A wonderful 9am appointment 🤮, followed by a review with the Stoma Nurses.

As we (mother and I) wait to be called to my appointment my anxiety heightens. It is just everyday noises but there are so many of them! The waiting area is in the middle of the room with all of the consultation rooms around the edge. So from all directions, nurses are calling patients to do height and weight or blood tests, patients being called into the consultation rooms, a phone ringing, small conversations, doors shutting … all of the noises just feel overwhelming. I can already feel my hands doing their, I’m uncomfortable *tap, tap*.

Later that morning

Well that didn’t go well.

Well, technically it did and I didn’t learn anything that I did not already know but I was still very unhappy with the outcome.

I have answers to my questions but left the appointment feeling something … I literally cannot think of a word to explain how I felt. I was crying hysterically (thank you as always mother for being there!) I felt like I was an inconvenience, I felt like I was overreacting and I felt like a statistic. All I was asking for was some help.

Which to be fair to the guy, is not his bag really, it should be the Crohn’s/IBD team that are supporting me with Crohn’s/IBD instead of the surgeon and eventually the Stoma Team that came to my rescue today.

The initial discussion started with the registrar whose name I do not remember 😬 She has been so lovely. While I was on the ward, she kept sending me eggs. Scrambled, omelettes … etc … I don’t eat eggs and was super confused as to who kept trolling me with eggs 🤣

So appointment starts with the EGG-cellent registrar and then the consultant comes in. He looks at me and says, yea I don’t remember you. The registrar gives him a quick reminder of who the f*** I am and he shrugs and says, I see so many people 🤷‍♀️

🙄

Obviously he is busy, obviously he sees a lot of people but come on, look at your notes or even just my name before you enter the room! If not, at least politely blag it instead of – I don’t remember who you are – You are clearly that insignificant …

I lay on the bed, they both have a peak under the dressing at the hole in my stomach (they don’t remove the dressing) and then he starts to wrap up the appointment in a ‘if there is nothing else …’ type manner.

Hold on! I have questions! A notepad full! My main question is about my stomach, I need to understand how it is going to be in the future. Is this it? Will the lumps and bumps and scrambled shape flatten out?Will it get better? Can I do something to help it?

The consultant is bewildered by my questions. He literally utters the words, you’re alive aren’t you?! And was super confused as to what the issue was.

Now from his perspective, he performed emergency surgeries on me and prevented me from dying – and a huge thank you to that. But I have to look forward with that life that he saved and see how I can live it … these questions need answers.

Does it really need explanation? I woke up and my body has been disfigured and nobody can give me any straight answers about it just shrugs and being told to ask someone else.

Also, while in the hospital I was averaging a hysterical melt down at least once a day. At home, this now happens ‘only’ a couple of times a week. In between those darkest of moments, when the hysteria takes over, I manage to suppress the dark thoughts and find ways to distract myself – which is part of my reason for returning to work!

I have been told on at least 4 occasions, by 4 separate individuals that they would refer me to the Mental Health team. This was a mixture of me asking for it and them recommending that I get some support to deal with everything … but apparently any requests were cancelled when I was discharged. It is now the out patient team that I need not the inpatient. So back to square one. FFS! 🤬 The Consultant remained perplexed that I am not just happy to be alive and made me feel like I am ungrateful.

After he had rushed off as he has other patients to see, the registrar talked to me for a while, answered my questions and submit the request once more telling me to follow up with the Gastro team when I finally speak to them. Usually this is arranged by the IBD nurses that I am still yet to meet!

The registrar also answered my questions –

• My stomach –
  • Will it fix itself and flatten out? No. It will some but not to the level I will want it. In a few months they will review from a cosmetic perspective (if I insist), if not I will need to consider my options privately.
  • Where is my Belly button? They binned it
• Did biopsy confirm Crohns? Yes they can confirm it is not Cancer and is Crohn’s. (Who even mentioned Cancer?!)
• Why is it taking so long to heal? Sepsis is the answer to a lot of questions. As my body was fighting sepsis, it lapsed other functions, for example it stopped growing hair so it fell out.
• Muscular pain in stomach Internally I will continue to heal. Normally this takes c8 weeks, but with my illness c.16 before fully healed internally.
• Deep breaths still not easy As above with healing internally. Continue with breathing physio exercises.
• Can I drive now? They said yes. Not convinced as I still have a hole in my stomach. TBC.
• When can I start PT? I forgot to ask. I do still need to take it easy, not lift or over exert myself.
• Iron deficiency, always low, can I take supplements, injections, infusion They are a good level now
• When will stoma be reversed? At least a year. We will have another appointment in 4 months to start the process in line with the Gastro team.
• Where are we with my mental health referral? Lol literally no where. It has never been requested … at least 4 separate conversations have ended with someone promising to do me a referral … 🤬 The Registrar literally did it as I sat there.

Slightly later that morning

Not all super hero’s wear capes … some carry stoma supplies! 🦸‍♀️

The Stoma Care Team at Luton and Dunstable hospital are incredible. They have been amazing every step of the way so far.

As I came out of the consultants room, I could see Lisa the Stoma Nurse waving at me, she showed us into another room and then scooted off to let Debby know we were here.

They were looking out for me before I went in to my appointment and seeing the state I was in, Debby offered to come into my next appointment with me to make sure all is ok. The two of them just listened to what I had to say and made me feel so much better. I know that if I have any issues, I can call them and they will help me. They make the whole transition it Stoma land so much easier!

Even Later that morning

As we left the hospital and waited out front for Dad to pick us up … Mum lit a cigarette and aaaaaaaaaaaaaahhhhhh I want a cigarette!! A cigarette would have been great, it would have solved all my woes and made the world a better place. I actually rummage around in my handbag for the packet, I have a full pack as a safety blanket! As I put my hands on them, Mum starts moaning that I will regret it. So I decided to have one when I get home, which is long enough for me to be distracted by food and stop for a Subway breakfast instead 😊

That Afternoon

I headed straight to the sofa to watch Married at First Sight UK and to sulk for a while. As always Mum and Dad try to ‘cheer me up’ but sometimes you cannot be ‘cheered’, sometimes you just need to have a moment.

Lisa, Millie and Jaxon popped in that afternoon and Lisa listened to me moan while Jaxon raided the fridge!

Lisa and Jaxon conspired a plan and took me for a surprise – which turned out to be a Hot Chocolate and a Marshmallow cake from Costa ☕️🍰. Those little people always make me giggle and Lisa is good too 😊

That Evening

Sometimes you just need to be quietly by myself. That was my intent for the afternoon before Lisa and the little people came round. I can’t complain, I will never say no to a hot chocolate, (preferably with cream/marshmallows/more chocolate if anyone needs to know 😊) but I still need to sit quietly and depressively and feel what I feel …😭

Then as any crappy day must, I ended the day with tea and a Disney movie … FYI Cruella is brilliant, highly recommended.

🌹