I DID IT, Degree= DONE

I graduated with everyone else that I started my Degree with! In your face Crohns!

I am disappointed to say that it has been about a year since I last posted a blog entry. As you may know I have recently graduated from The University of Roehampton with a BA Hons Degree in Dance Studies. I am very proud to say that even with all the challenges that were presented to me I achieved a 2:1!! What with a dissertation to write and plenty of rehearsals and performances to fill up my evenings and weekends I didn’t have much spare time to write for ‘dancingwithapaininthebutt’. Since graduating I have found a lovely home with some friends in London and began the endless task of job hunting.

During my third year at Uni I had a little ‘blip’ around Christmas where I let the stress of Uni and third year get on top of me, I thought I was about to tumble into months of ill health again. Luckily, I was able to control this mini flare up so that it only lasted a few weeks. For the last year I have been on Methotrexate, a drug that I HATE taking (not that anyone enjoys being on any drugs). When my consultant recommended that I should try Methotrexate he explained that most patients that try it have amazing results pretty quickly. Unfortunately I did not have that response. This being said, not having an incredible response meant that I came off of Methotrexate at Easter and have been able to stay off of it ever since! :D

What’s Next

Now the degree is out the way I had better start sorting out the next stage of my life. I am job-hunting at the minute and am really keen to get involved in a creative organisation that has lots of character and personality. I would love to get involved in some dance projects along the way but am conscious that I am really enjoying being healthy. For the minute I am not willing to risk another flare up just to be a dancer full time. 

Back to Uni Life!

It has been a LONG time since I have written on here. Sorry :( . I had a summer of only working 12 hours a week and resting lots in order for my health to be in the best possible, ready for my third year at university. I do have to admit that by the end of the summer I was feeling brilliant but was bored of having no money and relaxing at home! So coming back to university was fantastic, I’ve met lots of lovely people, had some great nights out and have loved being back to dancing. In a strange way the sweaty, clammy, stuffy atmosphere of the dance studio is very comforting and feels like home.  

5 weeks into dancing and I fear things are beginning to spiral downwards... Again. Dancing has become less enjoyable and more painful. Eating hurts. Stomach acid in my throat. All the symptoms that terrify me into thinking I may have another year of struggle, pain and upset in order to achieve the degree I so badly long for. I just want to graduate at the same time as everyone else.

Trying to stay positive… This is the hard part. I have only been feeling like this for about two weeks so I still think there is a strong chance of getting back on track. I use a Salofalk enema every night, I am hoping that if I can use one in the day as well that may help heal things before it completely spirals out of control. From now on I am going to and from my lectures and to work and  the rest of the time is for chilling out, I must must must get back on top of this horrid disease!

Crohn’s free holiday? Definitely too good to be true!

Our week in Djerba was filled with relaxation, amazing food, quad biking, camel riding, jet skiing and much more. Unfortunately, as per usual, Crohn’s wasn’t far away! 3 days into the holiday and I woke up with the most horrific stomach pains and awful…how do I put this… ‘Bottom problems’ ;). The pain lasted about 2 or 3 days which was frustrating. I can deal with the ‘bottom issues’ but the pain I just can’t carry on as normal with. The pain meant that instead of being on the Jet Ski I had to go on the boat and follow Mikey, who was on a Jet Ski. I can safely say that none of this ruined or even slightly effected our holiday. It was amazing.

Dermatitis slowly creeping back! This time last year my chin and forehead was covered in a dry skin condition called dermatitis. This is apparently another side effect of Crohn’s. I had some anti-biotic cream to use and it all cleared up. For some reason it has started to flare up again on my chin, so back to the doctors for some more cream. Hopefully it will clear it up before it spreads too far.

Wednesday 20th June, Barium Meal test results!

Tomorrow is the day I have been waiting what feels like a life-time for. Hopefully my consultant will be able to tell me if I am in fact suffering with Crohn’s Disease and not Ulcerative Colitis. I am not 100% sure what difference having a diagnoses will have on my medication or how my consultant treats my illness, but I know that it will be good for me to know exactly what I suffer from.

Since I last blogged I haven’t really got many complaints (for once). I still have not been able to find out if my B12 level has returned to normal but fingers crossed that will be resolved tomorrow as well. I have moved back from University for the summer to a much slower and calmer pace of life, in the hope I can be as healthy as possible ready for my final year at University to start in September. In order to be as well as I can in September I have taken the decision to only work part time instead of full time. This sucks for my finances but if it means I have a much more successful third year then it will be worth it. I don’t want to admit this, but I am looking forward to taking three months out of dancing and giving my body a rest. I have accepted now that every time I really start to enjoy dancing again I fall ill. I don’t think my body can cope with such physical exercise at this time in my life.

Two weeks on Sunday and Mikey and I will be flying off on holiday for a week, a week of pure relaxation and sun. I have heard from lots of fellow Crohnies that whenever they are abroad they’re Crohn’s is the best it has ever been, I am excited to see if this is the case for me.

What a Small World!

This weekend has really proved what a small world we live in. I spent the weekend in Buckinghamshire with Mikey (my boyfriend) where we attended a food tasting party with friends of his from the village. Whilst at the party we met a lady who happened to have attended the same University as Mikey and I. Coincidentally she also studied dance, just 30 years ago.  How exciting to wonder what the University and course would have been like 30 years ago. After the food tasting party we headed back to Mikey’s bosses house, where we were staying, and discussed the lady we had met. I was interested to know how her career panned out after leaving University and why she was no longer dancing. Unbelievably I found out that she had to stop dancing as she has Crohn’s Disease! :0 I am interested to get into contact with this lady as she manages to control her disease with diet alone. Maybe one day I could be in the same position. I may be unable to dance because of this disease, that would break my heart, or I may be able to control this disease without daily medication, which would be awesome! After this weekend I feel relaxed, inspired and motivated to get back on track to a happy tummy.

One of the most frustrating parts of this disease, for me, is if you ‘overdo it’ for just one day it ends up affecting you for at least a week. For instance, this week I probably haven’t slept enough, have been out for diner a few times, had a couple of drinks and just enjoyed feeling a little more normal. This has left me feeling RUBBISH, a bloated and painful stomach, a few more toilet trips than previously, really tired and all because I tried to lead my normal life for a couple of days. I guess it’s a case of learning to take things a lot slower instead of jumping straight back into the swing of life as soon as I feel a little better.

After 3 B12 injections I was looking forward to getting my blood test results back this week to see if my B12 result was back within the normal range. I was feeling better within myself so was expecting the result to reflect this. Frustratingly I collected my results and was surprised to see that my B12 result was the same as the result I received before I had the injections, which was below the normal range. Then a message below states that ‘above result is from a sample taken in the last 12 weeks.’ It’s so annoying that they didn’t even take enough blood to test my B12 level which was the one result I wanted to see if improved. So instead they just re-printed the previous result. This week will be take two, another blood test to hopefully see a more ‘normal’ result. Fingers crossed.

2 more B12 injections, Barium Follow Through test and finally dancing again!

Since I last blogged I have had two further vitamin B12 injections, thankfully these have been a lot less painful. This is thanks to having the injections into my fatty bottom rather than my ultra-muscular arm (I wish)! Hopefully the three injections have been enough to raise my B12 level so I don’t need regular injections. We’ll just have to wait and see what this week’s blood test results say.

This time last week I was tucking into a yummy bacon and egg sandwich after enduring the hell that consists of taking laxatives and fasting, in preparation for a Barium Follow through test. Drinking the laxatives turned out to be the worst part of the whole process, as usual they just made me feel like I wanted to throw up. Then the nervous waiting begins before you are sprinting for the toilet, which takes surprising longer than expected. I was fascinated by what I could see whilst having the x-rays taken of my digestive system. I could see the x-ray screens that the radiologist was using from the bed I was lying in. Watching the Barium liquid move through my intestines fortunately distracted me enough to cope with the pain of the radiologist pushing and moving my bowels around in order to x-ray specific parts. An hour and a half later I had ran to and from the hospital café to the toilet 8 times and was ready to head home for some much needed food. So the waiting then began, 20^th June to be exact, until I go to see my consultant and am given the results. Crohn’s Disease??

Now back at University and loving it! I think the enemas and Methotrexate are now working together and having a very positive effect. The bleeding has decreased a lot, I now know longer look into the toilet and see what looks like a murder scene (sorry to be graphic). This has meant that I have been able to start a technique (Limon), that I had to defer last term as I was too unwell to dance. To my joy and surprise I have loved dancing again. I have always danced and never not enjoyed it, so when this flare up began and it affected dancing so much I was very concerned that I would never enjoy dancing again. Thankfully that isn’t the case, I still have some dizziness to deal with but it’s not to the extent that it was last term, I basically passed out every time I tried to dance. I am back in the studio every day and really love being able to enjoy my passion again.

Also on the dancing theme, I was part of the University’s Dance Platform performances at the weekend. Again this made me incredibly happy as at one point it looked like I would have to drop out of the performance. I could only manage one dance, but that was plenty, it still meant I got to be performing, what I love most.

Ouchy... B12 Injection!

After convincing the doctor that, 'Yes I do need these injections, as you can see from my blood test results I am deficient in B12', I swear sometimes doctors think because I am young, I have no clue what is best for me! He asked for my left arm and approached with the dreaded needle. Now I am really not scared of needles and as a Crohnie am used to regular blood tests, but 'Oh my' I was not expecting the, 'slight sting' that the doctor explained, to be such a burning, continuous pain! Once the injection was over I began to feel very hot, the feeling I have recently learnt to be the start of a process that results in passing out. I quickly got up, thanked the Doctor and left his office. Walking down the corridor and my eyesight began blurring and ears started to ring, this is when I know I am getting close to fainting. I made it out the first front door, into the little hallway as a nice gentleman caught me on my way to the floor.

As you can imagine the prospect of having to have another Vitamin B12 injection on Friday doesn't really thrill me! Hopefully these injections will mean that some of the side effects I have been experiencing will disappear, so I guess it’s all worth it.

Non-Crohnies, I think I should explain why I'm having these B12 injections. This will be my interpretation of what the doc's have told me, so apologies if it’s all wrong.

As I said previously I was originally given a diagnosis of Ulcerative Colitis, the docs have always told me there is a chance it could be Crohn’s because of my family’s history of Crohn’s Disease. While in London at Uni I read that people that suffer from Crohn’s disease can be deficient in Vitamin B12, this can cause symptoms like tiredness, fatigue and flu like symptoms, which I have been experiencing. I decided to ask the doc's in London to check my B12 level at my next blood test. When the results came back I was in fact deficient in B12.

At my next appointment with my GI consultant, I showed him these results and he found them very interesting. My consultant explained that B12 vitamin is only absorbed by one part of the body, this is the small bowel. Now Ulcerative Colitis (UC) does not affect the small bowel which therefore means that people that suffer with UC do not get deficient in B12.

This has led to having a Barium follow through test. This involves fasting for 24 hours before the test, taking laxatives to make sure your system is clear and then drinking a very thick, chalk like substance and having your small bowel x-rayed. Hopefully this will show where the inflammation is and subsequently see if I have Crohn's Disease in my small bowel.

Next Steps...

If this Barium follow through comes back that I do not have Crohn’s disease then I could have a rare form of anaemia (can’t remember what it was called, oppsie) or Coeliac Disease as well as Ulcerative Colitis. To be honest, I’m not really too sure what would be the best outcome of these three options.

This Barium follow through will happen the begining of next week and then its back off to Uni after three weeks rest at home. I am looking forward to getting back to Uni but nervous about getting back to dancing, I just want to enjoy it with NO pain again!! Fingers Crossed!!