When your next surgery could possibly change how you view yourself

I’ve sat and thought long and hard about writing about this next upcoming surgery because it’s a 70/30 as to if my current stoma will need a refashion as I may need an ileal conduit for a second stoma which will mean I will never have to sit on a toilet again.

I’ve spent the last couple of weeks weighing up the pros and cons alongside a fair amount of tears and wondering if I was really bad in a previous life (I’ve always had a strong belief in karma and previous lives).

My appointment

My liver has been playing up and this thankfully brought forward my surgical appointment by a few months.

I left the appointment with a sigh of relief as I am now on the surgical waiting list and hopefully will have a date by the end of July as I see my gynea surgeon. If you’re sat there going but you’re already on the list ?!?!?! Unfortunately I am rather complex due to mass adhesions and a rather large cyst that has attached itself to my liver, stomach & reproductive organs.

My surgery will be an MDT surgery, in layman’s terms that is a multiple disciplinary team as I will need colorectal, gynae, urology and a liver specialist in that operating theatre. An elective surgery with multiple surgical consultants typically means a longer wait as they all need to get on the same page and in theatre for any given Friday as that’s the only day my colorectal surgeon proceeds with surgical complex cases.

Confirmation from my last MRI has confirmed Buddy is alas still maintaining and growing due to what he’s attached too.

My bile ducts are also blocked thanks to scar tissue and gallstones.

What happens next?

The surgery is going to be a big one, I’m still waiting to see the anesthetist because the last gameplan back in 2018 didn’t work, the spinal and abdominal block failed and I went missing for several hours after the surgery because they couldn’t get my pain under control. I’m also allergic to all the good pain medications.

My next surgery will consist of:

Cyst and scar tissue removal
A full hysterectomy
Scar tissue removal from my vaginal canal
Ileostomy refashion
Abdominal reconstruction
Gall bladder removal
Stents placed to keep my kidneys functioning
Post op ileus so a NG tube will be placed down in theatre while under GA (general anaesthetic )
Adhelysis (scar tissue removal)

These are what will happen if the scar tissue is too severe and they can’t unpick the adhesions:

Bowel resection
Bladder removal
Ileal conduit being made from my current stoma
Permanent urostomy

How do I feel?

I’m trying to remain positive, however I know the last hysterectomy was abandoned last time due to the adhesions and I didn’t consent to a urostomy back in 2018.

I’ll be honest I am absolutely petrified, however I can’t keep living with the amount of pain that I am in and the bouts of nausea, sickness, hot & cold sweats due to the blocked bile ducts. It hurts to urinate, eat & move. So I am hoping that it will at least give me back my quality of life.

At this moment I honestly won’t know what I will feel like or how life will continue until I wake up after that surgery. I understand that the surgeons have to give me the worst case scenario as well as the best, however knowing my surgical history you can’t blame me for being a little down in the dumps.

Mental health

My mental health has taken a battering, I spend a lot of time asleep or on my own. I had my antidepressants increased as my moods can be a little erratic (zoladex and chemical menopause induced).

I have gained so much weight and medication bloating isn’t helping my body image but I know that once I’ve recovered I will drop back down to my normal.

I am going to request counselling again to help me post operative. For the time being I am going to muster on.

Having the conversation with my husband as I am a little insecure as to how he may see me and being worried he won’t find me attractive but he’s always said that he loves me for me, another bag wouldn’t bother him at all. The last year has really tested our for in sickness and health part of our wedding vows. I know deep down he will always love me but there is still that little voice that likes to pipe up when I can’t sleep.

As always

Many thanks for reading

Louise | @crohnsfighting Xx