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.

May 242015
 

My Flare-up 2015

After Christmas 2014 I started to feel a bit rough but put it down to the bug going round as everybody had it, After 2 weeks I wasn’t feeling any better and had started to lose weight. I contacted my IBD Nurse who agreed it was probably a flare-up and so arranged for some blood tests to check my CRP, B12, Iron level plus a few others, she also arranged an ultrasound. We upped my medication to the maximum dose and arranged an urgent appointment with my consultant. 1 week later and I was was no better, in fact I was worse and now struggling to eat without massive pain, vomiting, diarrhoea with blood and not to mention the insomnia so my IBD nurse arranged a short 6 week course of Prednisolone and calcium this started mid February. I also switched to living on baby food and cuppa soups as I couldn’t handle normal food.

My ultrasound appointment was mid February and the doctor doing it had fun as I’m very ticklish, we used so much jelly lube to help stop the tickling I required a towel to clean it up but we got all the pictures needed to show my entire large colon was inflamed.

My appointment with the consultant was for mid march and by that time I had been on prednisolone for 4 weeks but my symptoms hadn’t got any better and my weight had dropped to 54kg (down from 64.5kg). The consultant upped my prednisolone to 40mg and I started an 8 week reducing dose. Due to my ultrasound results and my previous history we discussed trying a new drug call Infliximab, the consultant filled out the paper work for the funding request and said I should know in the next 6-8 weeks if I’m accepted. After a week on the higher dose of prednisolone I was starting to feel better again and managed to start eating solid foods again, albeit only baked chicken and boiled potatoes.

My funding for Infliximab was approved at the start of April (just 2 weeks after applying) and I had an appointment with my IBD nurse the following week to fill out the paper work and get the screening tests done. Over that weekend my fistula comeback to life, it had been happily closed since 1998 but now its back so just another thing to deal with.

I spent 5 hours at the hospital going over the paper work and all the possible side effects along with getting multiple blood tests and a chest x-ray done. The results come back fine and I was given my first Infliximab appointment at the start/mid may. As I was dropping down the prednisolone my symptoms were coming back and when I got to 15mg they come back with a vengeance. After a chat with my IBD nurse and consultant it was decided I would be admitted to hospital and they could start my Infliximab early, this would also give them a chance to monitor me for a few days. As usual I was given fluids and monitored for 24 hours before being given my first dose of Infliximab.
It was decided my first dose would be a double dose and given over 4 hours and then monitored for another 24 hours, thankfully everything went fine and I was released after 3 days.
hospital stay

I noticed a big improvement in my symptoms after the first dose and the only side effect I had was extreme fatigue for 5 days after the first infusion, I was informed this is normal and will improve with each infusion. My second infusion of Infliximab come round and I had it as a day case patient at the rheumatology department, This time it was the normal single dose over 2 hours then 1 hour of fluids and again everything was fine. This time the extreme fatigue only lasted 3 days so its getting better.
My next infusion is the start of June and that will be the last of my loading doses, it will then go to 8 weekly infusions which will hopefully end this flare-up and put me in remission. I have just finished taking prednisolone (yesterday to be precise) and I’m hoping I won’t need to be put back on them any time soon. I’m also hoping to start reintroducing normal foods back into my diet as 4 months of eating just my safe foods gets boring, I can’t wait for a sausage and bacon sandwich.

May 162015
 

My Story – Crohns Disease – Part 2

In Part 1 My Diagnosis I wrote about getting diagnosed with Crohns disease and now I will give a brief history since then.

Over the years since I was diagnosed with Crohns disease in 1996 I have had multiple flare-ups, several of which have resulted in stays in hospital. I class myself as being lucky because I normally have 3-4 years between serious flare-ups. I still have bad days and sometimes bad weeks but I don’t class them as flare-up, for me a flare-up has to be 2+ weeks; that maybe why I end up in hospital when I have a serious flare-up.

My first serious flare-up was my own fault and I say that because as a teenager I thought I knew better than my consultant and decided that because I felt good I would stop taking all my medication. 2-3 months later I ended up in a flare-up, After a short hospital stay I had an 8 week course of prednisolone and since then I have taken the medication the consultant advises.

My worst flare-up

In August/September 2003 I swapped job’s and lasted just 4 weeks before I started to flare, as I was on probation still that was the end of that job. I started off with a 10 week course of prednisolone which helped at the start but as my dose went down my symptoms started to come back, I finished the course of prednisolone just before Christmas 2003 and managed to have Christmas dinner at home but it didn’t last long. A few days later I was admitted to hospital and I was given 2 weeks worth of IV steroids, Antibiotics and fluids in 3 days due to being so bad. At this point my weight had dropped to around 6.5 stones (41kg), again I was given Ensure plus drinks to help. Due to the severity of my flare-up I was given the choice of surgery or try Azathioprine which comes with its own risks and side effects. I chose to try Azathioprine as I wanted to keep surgery as a last resort and the benefits outweigh the risks for me but I was told if it didn’t work then it will be surgery.

I left hospital with another 4 months of prednisolone and also azathioprine to go alone with my pentasa. I was told it normally takes 3-4 months for azathioprine to be fully working in your system, I started seeing results after 6-8 weeks. Thankfully I didn’t get any major side effects. I did get a small amount of nausea which I cured by making sure I had something to eat when taking my medication.

I spent the next year signed off work recovering and thankfully azathioprine worked and put my Crohns disease into remission. Since taking azathioprine my flare-ups have only been minor and normally fixed with a short course of prednisolone, well until this year (2015) where I have been in a flare-up since January but I will discuss that in another post.
crohns disease prednisolone

Dietitian

Anyone with Crohns disease will know that some foods will make them worse so I was refereed to a dietitian to help me work out what foods where causing me problems and to make sure I was getting all the nutrient I required. I had to keep a food diary listing everything I eat and what effects it had on my symptoms. We discovered that dairy products, nuts and fruit or veg were a no no for me, I was tested for lactose intolerance but that come back fine so I avoid all dairy products now. We didn’t identify any other foods that aggregate my symptoms but I must say I didn’t eat any fruit or veg before anyway.
I have since found when I have a flare-up a lot more foods are a no no but once out of the flare I can eat them again. Over the years I have found my safe foods when flaring are; Baked chicken, Boiled potatoes, Rice, Rice krispies, Bread, pate, jelly, chicken cuppa soup and some baby food if I get really bad.
crohns disease food