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.

Jun 072015
 

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

Doctors

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.
Infliximab