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 022015
 

Bone density scan

Just over a week ago I went for a bone density scan to see what if any damage has been done to my bones by all the steroids and other medications I have taken over the years for my Crohn’s. The technician did several bone density scans of my hip and spine from both top and the side, it took around 10-15 minutes in total. It involved me lying on a firm bed while the scanning head moved around me. At the end the technician said “I can’t tell you the results of the bone density scan but I will give you all the leaflets on osteoporosis and the different treatments available”, so reading between the lines id say I got osteoporosis but have to wait until the end of June to get the official result from the bone density scan when I next have a meeting with my consultant. If anyone wants more info on osteoporosis just head over to the National Osteoporosis Society website.

General update

This past fortnight has been a mixed bag of good and bad days for me, probably more good than bad but only just. The biggest bad part was being in pain for 2 days with a bit of food stuck in my bowel at a narrowing in the bowel and after some not so gentle prodding of my stomach soon had the food moved and the pain subsided. The other bad part was a few days where my Crohn’s played up big time and it felt like I was back in a full flare-up again but it settled down quickly.
Another bad part has been the pain in my knee’s, I’ve always had bad knee’s but this last fortnight has been really bad. I went for a short 2 mile walk along the seafront on my birthday and it left my knee’s in agony for days after to the point I had to take pain killers.

One of the good parts of the last fortnight was spending time with my family, I spent 5 days staying with my parents and celebrating my birthday and just relaxing and having a proper rest to help recover from my latest Crohn’s flare-up.
Another good part was I decided to start volunteering to help run my nearest Crohn’s and Colitis group which for me is Brighton & West Sussex Group.
I have been attending the monthly meet-ups they have for the last 5 months and decided because I got so much from the group I wanted to help and they are always looking for more people to support the groups. I attended a Volunteers meeting one evening and learned that the group is looking for a complete new organising team due to the old members wanting to take a back seat for a while. So I decided I would take the role of co-ordinator, I’m also doing the Facebook and Twitter page as well at the minute.

The last good thing was I finally got a date for my surgery for my teeth, The 25th June I will be going into hospital in Winchester and having most of my teeth removed while I’m under General Anaesthetic. It has taken 3 years of being refereed here and there to finally get a date, I’m looking forward to it but also nervous at the same time, my teeth are almost all broken and falling apart so there is no saving them. This is just another thing to thanks my Crohn’s for, although Crohn’s doesn’t give you bad teeth the diet and medication can have a huge impact on them.

Its now just a few days before my final loading dose of Infliximab and then I will be on 8 weekly Infusions, Not sure how my body is going to react to the 8 week gap as I can already tell its wearing off now but time will tell. I’m also hoping I don’t get any infections due to my teeth surgery otherwise it will delay the Infusion even further.