Oct 302015
 

GoodAndBadDays Campaign

Crohn’s Disease and Ulcerative Colitis, the two main forms of Inflammatory Bowel Disease (IBD) are often described as invisible illnesses. They are chronic conditions that can have many bad days, but also good ones too.
Your #GoodAndBadDays photos help highlight the severity of IBD and show that whilst you might look good on the outside, perceptions can be misleading.

Please support Crohn’s and Colitis UK campaign with a charity donation:

Text DAYS22 £5 (or any amount) to 70070 – or visit www.crohnsandcolitis.org.uk/donate

Here are my ‪#‎GoodAndBadDays‬.
#GoodAndBadDays
I’ve had Crohn’s Disease for 19+ years now, no two days are ever the same. Having an invisible illness is crippling, nobody knows when you are in agony, when you have no energy because you’ve not slept properly in ages. I won’t let this beat me, the good days are currently winning.

Oct 242015
 

So its been around 4 months since I posted an update and its weird how so much has happened but also so little has changed.

Teeth

I’m still waiting to get my new teeth as the top back gums are taking a long time to heal properly, the dentist has said its due to all the medication I’m on but we are hoping I will get my new teeth just before Christmas so fingers crossed.
For the first 2 months I was living on an almost liquid diet as chewing wasn’t an option and I was given Fortijuice drinks to go along with the soup I was having and boy my GP really doesn’t like having to prescribe the Fortijuice drinks. As time has gone on and my gums have healed I have learned to start chewing with my tongue and as long as I cut stuff up in small pieces I can eat normal food again.

Update

Over the last 4 months my heath has been pretty good with many more good days than bad days which is always good. I have continued to get my Infliximab infusion every 8 weeks which is really working well for me and long may that continue.

Currently my diet is very weird and I’m sticking to just a few foods as I’m struggling to find foods that agree with me consistently, currently I’m eating rice, chicken, potatoes, sausage meat and pate on bread. Eating these foods I have managed to keep my stomach and bowels happy 90% of the time but it is a very boring diet I’ve had this year. I have been trying a small amount of chocolate which seems to be ok which is great as its been years since I’ve been able to have chocolate.

A few months ago I had an ECG and bone density scan and have since got the results. The ECG come back fine thankfully and the doctor believes it was just a side effect to the steroids I was on, since stopping the steroids my heart rate has slowly gone back to a more normal range. I also got the results from my bone density and it wasn’t as bad as I expected. I was diagnosed with Osteopenia which is the group between normal and osteoporosis. I have been told for now to keep taking Calcium tablets daily and this will be reviewed in a year or so time.

Life

In the last month I have moved house (which is very stressful) but everything went pretty smoothly in the end, it was a bit stressful finding a new place that was suitable for me but I got there in the end and hopefully I won’t need to move again for a while.

Back in September I helped run a Family day in Brighton for Children with Crohn’s and Colitis and there parents, the day was a huge success and the feedback from the parents and children was amazing and they were really glad to meet others and discover they aren’t alone. I had to give a very small talk on what the group does which was a bit scary but I had so much fun and I think I got as much out of the day as the parents and children. The adults had some medical talks from different doctors and while this happened the children had some fun with science. You can see some photo on our groups Facebook page.