One year ago to the day I went under the knife for what I hope to be the last time! My surgery lasted just over 5 hours and was all done laparoscopically amazingly!
'JPouch excision and removal of all remaining rectum, barbie butt and permanent ileostomy stoma created! Wow what a crazy year, so where am I now?
The Early Days!
I was out cold on pain relief for 6 days then started to bounce back slowly! After 10 days I was home and recovering with the help of various pain medications and a lot of rest!
It was a bumpy few weeks which saw me back in hospital with a prolapse stoma at just 3 weeks post op! It was an awful experience but thankfully one not repeated to this day... so far... fingers crossed never again!
I spent the next few months building myself back up and reclaiming my life! I started with gentle walks 5-10 mins a day and reached 5km by 12 weeks.
My ‘barbie butt’ was amazing and recovered with little issues, I was back on my bike for the first time after just 12 weeks!
Covid - 19 Hit!
The world changed around me before I fully recovered, and we went into national lock down on March 23rd 2020 due to a worldwide pandemic! COVID-19 or Corona Virus as its also known.
I was told to stay home shielding as I am immune suppressed and also have Asthma that requires a steroid inhaler, the risk of hospitalisation was seen as very high and potentially could lead to death, as I was classed as ‘Clinically Extremely Vulnerable’, So I remained at home until I decided to return before lock down ended in July. Being at home for so long took its toll on my mental health and I needed to get back on track!
I was working at a Primary School at the time and returning was not easy, I suffered extreme fatigue and teething issues with managing my stoma. I slowly built back up to full time and felt more human than I ever remembered!
Throughout the summer the country continued to fluctuate in and out of levels of lockdown, for me the slow pace of the world around me afforded me the opportunity to fully recover and take life at a steady pace. I still see this as the silver lining of it all if there is one! My boys now aged 13 & 16 were both home schooling and I was able to spend valuable time with them and be involved in their study, precious time!
Throughout the summer I continued to heal and regain my strength and had many achievements I never dreamed possible! I spent time at sea on my Kayak, I walk and cycled miles and felt fitter than ever before. In fact, this is the first time my kids had ever seen me well!
Here are just a few pictures of my journey!
In September 2020 I picked up a stomach bug and was admitted to hospital after 3 days suffering with extreme dehydration. I was treated and returned home to recover.
In October I was well enough to set myself a new challenge! I secured a new job working in a secondary school as a Teaching Assistant. It felt great to be progressing and being proactive in my career for the first time in a long time.
One year On!
So here I am a year down the line! How is my health now?
Well, I would love to say I am cured but sadly we all know Crohns and Colitis are lifelong conditions and with ‘indeterminate Colitis’ which is my diagnosis, there is always a risk it can move from Colitis to Crohns as I carry the genetics of both diseases.
For me or now the large bowel issues are gone and can’t return! Not in my large colon or rectum as I have neither lol… but the other issues stay.
I have been diagnosed as suffering Fibromyalgia as part of the IBD (Inflammatory Bowel Disease) I am left with and struggle daily with joint issues and chronic fatigue. Some days it all hits me and the best I can do is plod, but overall, I manage an active healthy life, and take full advantage of my newfound freedom away from the loo! I supplement with Turmeric and CBD Daily to help this as well as take Amitriptyline each night.
Stoma Output Issues!
My stoma output is constantly watery, so I have to work hard to avoid dehydration. I drink a hydration solution throughout every day and avoid flushing myself though with water! I struggle to absorb nutrients and essential vitamins and minerals so take supplements and receive regular shots of B12 as I can not store it.
Bile Salt Malabsorption
I have been left with another condition as a side effect known as Bile Salt Malabsorption, I take 4 tablets a day knows as Colesevelam to help my body reabsorb some essential bile salts to maintain my system.
I suffer brain fog and scar tissue pain as well as a very messed up menstrual cycle which is also affected with cysts and scar tissue. All probably as a result of the numerous invasive surgeries.
But with all this I feel blessed to be alive and able to do all I can do!
When I look back at the pain and the hours of my life I spent on the loo, I feel so blessed to be given my life back with the permanent ileostomy stoma I affectionately refer to as ‘Fred’ I finally have freedom!
Fred is as much a part of me now as any limb or organ and yes there are says it itches like hell, bleeds profusely for seemingly no reason on occasions, and hurts from scar tissue, but it’s a hell of a lot better than active disease!
Its February 2021 and I have had the first Covid-19 Vaccine known as the mRNA Pfizer Vaccine and I am near the end of my shielding (second time since Jan 21) and very much looking forward to embracing what this year may bring!
I have covered all aspects of my surgeries since they began in my blog and shared so much of my journey. I feel truly blessed to be here and able to help others by raising awareness of this awful disease. I run this blog purely to help this cause and welcome any input or feedback if it has helped you in anyway.
I have started making and selling Stoma Bag covers and Seat Belt covers to make life as comfortable for other as I can, whilst raising some money from sales for Crohns and Colitis UK, a charity close to my heart that have been an excellent source of support and information for me over the years.
I will continue to blog and share my experiences and journey to fight the taboo of the disease!
Thank you for reading and taking the time to raise awareness.
Stay safe and take care!