It’s been a long and tiring 2 years battling Crohn’s Disease. I’ve been in and out of hospital more times than I can count, trying to get myself back to normal… but today, I’ve some very happy news. I’ve just been given the all clear.
I had a picture of me come up in my Facebook memories just the other day. It was two years ago at the start of my treatment to get my life back that my Crohn’s had snatched. In this picture, there I was, laying there just skin and bone and couldn’t eat a bite of food.
Fast forward two years to now, and I’ve just been in for a colonoscopy to check everything has healed properly (they are always fun) – and was told everything is normal, there is no sign of disease.
I’m absolutely elated, but it doesn’t mean I’m totally out of the woods. Crohn’s currently has no cure, so although you can be in ‘remission’ (like I am now), there is always a chance it could return. I’m not going to stress too much about this though, as apart from diet (which I’m working on), you don’t have much control over when/if it comes back.
What is Crohn’s Disease?
Crohn’s Disease is an autoimmune condition that sparks inflammation anywhere in the digestive tract, from mouth to rectum. It’s in the same family as Ulcerative Colitis and can cause a number of issues including intense pain, fatigue, loose stools and more.
I was diagnosed at 17 years old, but things got really bad for me 2 year ago when I almost lost my life to it.
As it’s been exactly 2 years since I first went into hospital, and to now come full circle and be happy and healthy, I thought I’d look back at everything that’s happened. I’ve written so many posts about my health, both for MoneySavingExpert and for this site, that it’s probably been hard to follow along.
Whether you’ve got Crohn’s yourself, or know someone who does, there is light at the end of the tunnel. I know it’s easy to tell yourself that, but as you’re about to see, I’ve been to the brink and got through it all.
So today’s post shows you a timeline of my journey battling the disease, and what happened at each step, now that I’ve completed this full circle of coming back to health.
6 stone 10. I couldn’t eat a single morsel of food without pain, and my bowel was so damaged that having anything going through it could cause it to perforate.
I was given ‘TPN’ which is liquid feeding through a tube in my arm, which gave me all the nutrients I needed a day, and this was pumped into me for 24 hours a day.
Surgery was urgently needed, but I couldn’t have it done at such a low weight. The TPN would continue everyday to try and build me up and get ready for surgery. I needed to be transferred to a specialist hospital as I was such a complex case.
I was finally released from hospital after 85 days as an in-patient (and was getting impatient)! I was trained how to administer my TPN at home and spent the next few months at home, trying to live a normal life, while feeding myself through a tube.
After a week, I returned back to work, and was putting on weight very slowly to build myself up for the surgery I needed. I still couldn’t eat anything, but was never hungry for food. I managed to just get on with it, and was just happy to be out of hospital and have some kind of routine again.
I finally had the surgery I needed after 6 long months of waiting and next to no food. I was given an Ileostomy bag and 40cm of diseased small intestine was removed.
The surgery pulled a bit of my bowel out of my stomach, and a bag was placed around it to catch the waste. For the foreseeable future, the bag would give the rest of my bowels a rest and give me chance to heal. I’d empty the bag when it filled, and change it every day or so.
It wasn’t the easiest thing to deal with, and it meant good nights sleep were gone, because you’d have to empty in the night too – but it gave me my life back. After I’d recovered from the surgery, I was in no pain at all, and everything was starting to get back to normal.
Because I was now disease free, my puberty (which was suppressed as a teenager), started to finish at age 21, which muscles and body mass starting to form. I was now 10 stone 4, which was 3 and a half stone gained in weight in 6 months.
For the next 10 months, life would go on with very few grievances. The bag didn’t get in the way all that much, and it meant I could continue living as I normally would.
I went back in for my reversal surgery, which would stitch my bowel back to how it would normally function (and I’d no longer have the bag). It was a success and the recovery period started again.
The first few weeks adjusting back to normal was tough, and as I’d been cut open again, even laughing and tensing my stomach muscles was agony (worse that the surgery!) – so I tried to think as miserably as possible until it stopped hurting..!
Within the space of a month, I was back at work and back to myself again. This time I was bag free and ready to face whatever life threw at me.
I had a few little twinges and signs that my Crohn’s might be returning, so had a close eye kept on me, but luckily they were false alarms, likely still part of the healing process.
I’d also had a haircut during this time, thus my drastic change in appearance!
And now here we are today. Just had several tests done to check how things are doing (and how the rejoined bowel had healed), and everything was fine. After all of the blood (from blood tests), sweat (from hot flushes) and tears (from basically everything), I’m now living a mostly normal life.
Hopefully my Crohn’s will stay at bay, but looking back over the past two years, it’s been a lot to go through. I’ve had people ask me how I got through it all, and the honest answer is ‘you don’t have a choice’. 2 years ago I was terrified of needles, nurses, and all things hospital related. Now I’ve had 100s of blood tests, 100s of appointments and it’s just become normal to me now.
If you ever get a diagnosis of Crohn’s, or someone that you know does, I wont make it out like it’s easy… but you get through it. Get the right treatment and listen to your body at all times, and you get through anything. If a total hospital-phobe like me has done it, anyone can with the right mindset.