Surgical Review #2 – 13.02.17

Back to see my amazing surgeon today.

Don’t worry, I’m okay! If anything, that’s the reason for seeing him. I am doing so well since surgery, he double checked my blood work, did a MRI scan and a calprotein test to confirm that everything is A-Okay.

I’ve briefly discussed my thoughts on ‘remission’ this time around here, and also here. But today it was made official but not at all scary.

My MRI scan of my small bowel and pelvis showed no activity of Crohn’s disease. If anything, some parts of my bowel weren’t dilated enough, indicating that the prep I did hadn’t reached the latter end of my small bowel, but he was happy with my overall clinical picture along side my other results from bloods and my stoma. He said that because I have been managing my ostomy so well, he was going to move me down to six monthly appointment and see where I was on my Stomaversary in late August. Awesome news, I love not having to go and see more doctors! A welcome change from the shitfest that was 2016 and years previous.

We chatted abit about my future surgical options – I was generally wondering what on earth had been done to make my ileostomy permanent even though I have my rectum still left behind – and he explained that I had received a subtotal colectomy with an ileostomy because I have Crohn’s Disease. If I had had UC, he would have removed it all and given me the Barbie Butt or he would have looked to do a J-Pouch surgery – so a temporary bag, then a reversal and creation of the internal J-Pouch – but again, I have Crohn’s Disease. Because we know my issue has always been small bowel reoccurrence, this was not an option. He has left the rectum because it wasn’t worth doing a very massive surgery when I was so unwell to begin with. The subtotal was enough, he said. This way, I could see what happened with my rectum in the future and if it caused problems – excessive bleeding and pain mostly – he could remove it. What have had done has left me with options, which he believes to be the best approach here. It looks as that further surgery isn’t happening any time soon – so bloody happy about that – but it will happen.

This it to avoid any chance of cancer occurring in my rectum and anus. This happens in Crohn’s patients because actually having and living with Crohn’s – irrespective of having had surgery or not – means you’re at a higher risk for possible cancer of the bowel and anus. I knew that Crohn’s Disease as an illness gave me a higher risk for cancer, I didn’t realise what was involved in those statistics. For me, this surgery wouldn’t happen for possibly 10-15 years.

I left my appointment very happy: I know my surgeon quite well now – after all he did my first pre-surgery colonoscopy, has looked after me during my multiple hospital admissions and knows my insides too – so I trust him. I know he is at the end of a phone for making an appointment and I have the support and guidance of my stoma nurse and IBD nurse too. I feel reassured that despite not being discharged from colorectal surgery today, I am in good hands. Building up that trust is important, I think, to get the best out of your appointments and your care too. (I’m sure there is a future blog post here…)

He was also happy to give me the green light to find employment. His only warning was to remember that I do still have a chronic illness and I need to built up to a full time job. He wants me to be careful and with good reason too: I don’t want to ruin his hard work of giving me back my life with the help of my ostomy. I am still so thankful for the NHS and their dedication to my case. It’s not special or rare, but it has been complicated and lengthy. Thank you, Heart of England NHS Trust; you’re awesome.

***

On that note, I got my stoma checked with my stoma nurse too. Everything is looking great for being a week off being six months post-op. She is still impressed by how well I am coping and how much I have worked towards accepting this as my life now.

That being said, this is my life.

I did contemplate his offer of surgery to reverse my stoma but the risks are too great: joining my small bowel back to my rectum could be exactly like my first surgery; the pressure and recovery of it actually taking place could make my Crohn’s flare up, reoccur at the joint and end up in more surgery to create a new stoma. Currently, my butt isn’t giving me issues, so I am happy to leave my digestive system as it is. I was pretty sick before my ostomy surgery, I am happy with how life is going right now; I appreciate my ostomy for continuing to letting me live a life without pain and without medication (for the foreseeable future).

This is my life; it’s sounds such a permanent state of affairs and seems daunting but its anything but. knowing that my stoma is here and there is no current option to get rid of it. I have chosen to embrace my current situation because it is what I will have for the rest of my days. I am only 28 so I have decades with Pricilla. To help myself accept all of this, I have taken to enjoying the small things I adore about having an ostomy:

• Being able to poop in bed. Most helpful in the winter when it is freezing cold!
• Being able to poop whilst out in public, whilst eating dinner, whilst being on the phone.. the list of ‘where I now poop’ is so long!
• Understanding about my digestive system because it literally hanging out of my body. The peristalsis of my bowel is quite hypnotic some days; it is reassuring.
• I can see my body working!
• I get to have a secret – no one knows I have a bag under my shirt or hoodie unless I tell them or show them.
• I get to learn more about medicine and health. I have never been like this; but having IBD and now this ostomy, I am obsessed with it. That thirst for knowledge has always been inside of me – its a huge part of the reason why I studied a new subject for my degree and why I took up my year abroad too – I never thought I would enjoy medicine as much as I do now.
• It makes me proud to be a fighter.
• It makes me so strong, because I know how weak I was.
• I appreciate my good days. They are greater – much greater – than my bad days nowadays but I don’t ever forget those awful, gut wrenching days of pain. They push me forward, without a doubt.
• Being able to eat and eat well! I can’t thank my stoma enough for giving me back my appetite and giving me back my passion for food. I can feel my body needing nutrients and I can finally give it what it needs without pain! Love that.

By no means is my journey with my ostomy over. I have an appointment to see my Gastro next month to discuss how we are going to assess my health from now on. That could very well be the last appointment in this chapter.