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.
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.


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.


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.


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.

Jul 042015

So last week I went in to hospital to have most of my teeth removed, the plan was to leave my front few teeth top and bottom so I could eat some food.

Teeth surgery

So the day started early, I got up around 5am and travelled to the hospital with my parents. I was admitted around 8am and spent the next 45 minutes going over what medication I was on and my history with the surgeon then the anaesthesiologist and finally the nurse. It was decided that due to the risk of infection they would pump me full of antibiotics to reduce the risks as much as possible.
So I went down to the theatre room around 9am and was given some gas and air to relax me before being given the General Anaesthetic by gas, and that’s the last thing I remember. I was told I left theatre around 12:00pm and woke up in the recovery area at 12:30pm, I remember shivering and being giving a blanket before being taken back to the ward. The next thing I remember was waking up around 2:30pm and just sort of dosing, the nurse come and took the dressings out of my mouth and got me some water and an energy drink . The energy drink was a Fortijuce as that’s the only one which doesn’t contain milk.

The ward I was on was male only so my mum couldn’t sit with me but when the last patient left the ward around 3pm they let her in. I had to drink the energy drink and the water before they would release me, now it can be hard drinking when one part of your mouth is numb but try it with your whole mouth being numb. When my mum come and joined me I learned how many teeth had been taken, it was a whooping 19 teeth. I had lost all of the top teeth and only had 5 teeth left on the bottom front left side, so chewing is out of the window until I get the plate with false teeth. I currently get to enjoy cuppa soup with small bits of bread, some baby food and a supply of Fortijuce drinks. I was discharged around 4pm and sent home to bed to rest more.


I was given a local anaesthetics to help with the pain at the start and then I was advised to take the full dose of my pain killers for at least the first week, my pain killer was 30mg codeine with 500mg paracetamol 2 tablets every 6 hours. I also have the fall back that if the pain is too much I can take Tramadol to help.
The first few days I actually felt quite good and had very little pain as long as I kept my mouth moist and didn’t touch my gums.
Now a week on I have reduced the pain killers and only get minor bouts of pain but the gums seem to be healing nicely.

Now just waiting on the dentist to decide when the gums have healed enough, probably another 5 weeks or so before I get a plate of false teeth. The only problem I have had is talking clearly, to start with it was very hard to understand but as each day goes on its got better and now I’m almost back to normal. I think I have been very lucky as most people are surprised at how fast I recovered and how little it seemed to hurt but I’m sure it would of been much worse without the pain killers, anyway I’m off for some soup.

Jun 242015


Tomorrow I will be going into hospital in Winchester and having most of my teeth removed while I’m under General Anaesthetic. The nerve’s are starting to set in now and it’s weird I’ve not had tooth ache for over 6 months but last night and this morning I have got major tooth ache but not long now. I think the biggest challenge I’m going to face is eating, I got some soup and baby food and will be hopefully getting some meal replacement drinks from the hospital to help. I have to wait at-least 6 weeks for the gums to heal before I can look at getting a plate fitted.


Last week I started to introduce normal foods again, I went a bit overboard and did a fry-up and I paid the price for a few hours but it was worth it as it will be a while till I can do it again.


This past couple of weeks have been pretty good, Most days I’ve felt fine with just a few bad days. Lets hope this continues.
I’ve been getting around 7 hours of sleep a night now with just a few bad nights, I’ve also started walking more now which will hopefully help anyway that’s its till next time.

Jun 072015

Just a small update this week as it has generally been a good week with just some minor symptoms returning.


On Wednesday I had an appointment with my local GP, I had a list of problems to discuss. This year I seem to be racking up new problems.
We started by examining a new mole like lump on my stomach, after a thorough check the doctor said its all good. Apparently its a side effect of the azathioprine but he did say its always best to get it checked out. Next on my list was an itchy scalp, Doctor said its is a form of psoriasis so now I got a new shampoo to use. Next on the list was my joint pain in my knee’s (another side effect of Crohn’s), Due to having Crohn’s I can’t take the normal NSAIDS (non steroidal anti inflammatory drugs) like Ibuprofen which is good for joint pain so instead I’m stuck with paracetamol and codeine. The final item on my list was my heart, the nurses at the hospital noted I had a fast heart rate (around 120) and said I should get it checked out. The doctor took my heart rate and it was sitting at 98 with fluctuations up to 120, He then listened for any murmurs or defects; of which he found none thankfully. We arranged for an ECG to be done on Friday morning but thinks it’s due to all the medication I’m on but still wants to check and monitor it.

ECG and Infliximab

On Friday morning the nurse did my ECG; lots of wires and stick pads attached to me, why does everything require a stick pad that loves to pull off the hair for free! The nurse said the ECG looked ok but the doctor would check the results and let me know.

On Friday afternoon I had my 3rd loading dose of Infliximab, the day case unit was busy as always but this time they were running behind and after doing all the pre checks we got started. Everything went ok again apart from being late finishing and 2 nurses had to do some overtime, we have made sure my next appointment has an earlier start time. I’m now on 8 weekly infusions of Infliximab which will hopefully keep my symptoms in check. I must say after this infusion of Infliximab I was tired that evening but felt fine over the weekend which is a great improvement so I’m hoping it stays like that.