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Living with Crohns 3.5 Years after JPouch Removal, Permanent Ileostomy Stoma & Barbie Butt! The Now!

3.5 years ago I went under the knife for what I hoped 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 few years, so where am I now?

The Early Days post op!

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!

I have shared my early days post operation in a separate blog.

Jump forward 3 years to 2023!

I would love to say I am cured but sadly, as we all know Crohns and Colitis are lifelong conditions, my disease is complex and whilst it had always labelled Indeterminate Colitis, with the removal of the large bowel, Crohns has stepped in to fill the gap!

The last 3 years have seen me suffer blockages, inflammation, active Crohns flare ups and more!

It all became apparent around a year in, I started noticing what I believed were ulcers on my stoma, I was referred to the Stoma nurses who were at a loss, the ulcers were on what was found to be a large granuloma. I was referred to a specialist dermatologist and underwent subsequent testing to determine what was happening.

Testing involved biopsies and extensive allergy testing as they felt I was allergic to something that was causing the spots as well as the intense itching I suffered under my bag. The only positive result was that I react badly to some adhesives which are unavoidable as I have to stick a bag to my stomach every day! Luckily, I was given a steroid inhaler to resolve this issue and with added barrier spray, it is not an issue for me most days.

I progressed to have many ‘partial blockages’ or what I believed to be flare ups, throughout the last few years and after extensive testing consisting of multiple MRI’s, Endoscopies, biopsies and a Pill Cam, it is now determined I do have active Crohns disease.

Pill Cam!

I have had to rely on Prednisolone steroid several times in the last 12 months and the side effects are even worse than before.

I get chronic oral thrush in my mouth and throat, bloating in my limbs and abdomen, weight gain, can’t sleep or relax and I suffer with flu like symptoms including chronic fatigue. However, they do help my bowel settle as well as relive the inflammatory arthritis I suffer in my knees.

Steroids are not a long-term management choice due to the side effects mentioned and the severe damage they can do physically as well as mentally, let alone the much unwanted weight gain.

I have now been referred back to St Marks Hospital under the same Bowel specialist as pre surgery, Professor Hart. 14 weeks ago I started Azathioprine – immune suppressant therapy as I was on it 10 years ago and it kept me in remission for many years and reduced the need for steroids.

Azathioprine comes with its own issues and unlike before, my body did not handle it well. I was started on a low dose and increased over several weeks up to 175mg. Sadly the last 6 weeks of treatment saw my Liver Function test results decline rapidly, this lead to me having to stop the treatment completely before any long term damage was cause.

After 2 weeks of stopping 175mg of Azathioprine, its starting to clear my system and a dramatic change in my liver function test, my consultant agreed to try again.

They have restarted me on just 25mg of Azathioprine with added 100mg of Allopurinol, this reacts with it and in effect is the same as taking 100mg Azathioprine, the amount I managed in previous years.

Hopefully this will be enough to help, but not too much to cause me damage. I am now on fortnightly blood tests to monitor the results. Fingers crossed as the next step is back to biologics and if you have read my previous posts, you will know I do not like them at all!

Crohns the gift that keeps on giving!

I now suffer inflammatory arthritis mainly in my knees as well as Fibromyalgia and chronic fatigue. My daily routine has changed as the pain in my joints restricts me, however I hope if we can get the Azathioprine right, it will dramatically help there as well.

I can no longer climb mountains, often I can only walk a little without pain, but I am hopeful this is short term, I try my best to stay active but the joint issues really have escalated through this recent flare, frustratingly, as the Azathioprine was actually starting to take effect in a positive way before I had to stop and now restart, I remind myself daily that medicine has progressed so much in the last 20 years since my first diagnosis and even since before my first surgery in 2016.

The last few years since my JPouch was removed have been tough at times one incredible at others, and it's down to living with Fred my stoma, so whatever life and Crohns throws at me, I will live every second to the fullest and take the time and care I need in between.

Here are a few highlights to show that if you are careful and respectful of what you can and can't manage, life can be amazing between the flare ups 🥰

I am hopeful as I plan to carry on fighting, I love walking, kayaking, and cycling and am determined to get my fitness back so I can get back out there and play!

Time will tell! This post may not resonate my usual happy, cheerful self or be as positive as I have been before, I am in a dark part of my journey as far as disease activity but I always try to keep it real, I hope it can give support and empathy to others suffering that you are not alone, there is always hope!

In Reflection!

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 some freedom!

Fred is as much a part of me now as any limb or organ and yes there are days 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 in the large bowel which caused urgency, accidents, pain and so much more!

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 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!


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