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.
fortijuce
fortijuce2

Pain

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
 

Teeth

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.

Food

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.

Update

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.

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

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.

May 292015
 

Fatigue and Insomnia

During this latest flare-up I have had a major problem with fatigue and insomnia, In fact for all of February and March I was living on no more than 4 hours of sleep a night. I was given 14 sleeping tablets by the doctor but even using them I would only get 6 hours sleep and I would still feel like I hadn’t slept any way. I tried some herbal tablets which helped a small amount for a while but then seemed to have no affect after a while. After discussing with my doctor it was decided there wasn’t anything to be done about it as the insomnia was drug induced thanks to the steroids and would improve as the dose was reduced. In April it did improve as the steroids were reduced and I managed to get a average of 5 hours sleep a night, still not great but every bit of sleep helps.
Since getting my first dose of Infliximab I have been getting an average of 6 hours sleep with just the odd night with only 4 hours sleep. Even though I’m getting more sleep now I still wake up feeling just as tired as before I went to sleep, even the smallest bit of exercise (walking to the shop) makes me feel like I’ve done a full workout and requires I take a rest. I’m also struggling with brain fog and if I don’t write it down I can easily forget it at the moment. I’m hoping once my flare-up is fully under control things will go back to normal.

fatigue and insomnia

You can find further info and measure your fatigue at Crohn’s and Colitis UK ‘Fatigue in IBD’ project website. For info my current fatigue level is severe Fatigue but the score is slowly going down each month.