So apart from a few nightmare's I got a decent nights sleep last night which I was pretty surprised about, with the hotel been right next to the airport I thought it would be noisy.
Basically this morning consisted of travelling because Gatwick airport is on the outskirts of London so that means you have to take the Gatwick express train to get into Victoria station. This time instead of getting a taxi to get to Westminster which is where the hotel is located we decided to try the underground, this was my very first time on the underground and it was not as confusing as what I thought it was going to be. The underground is definitely the best way to travel in London plus it only cost £8 for a ticket that lasted all day.
We got to the hotel too early this afternoon but they said they would keep our suitcases so that we could go and do things. My choice of thing to do was go to the Imperial War Museum because when we were down in May it was completely closed for renovations, they are still currently doing work on the museum so a number of things weren't there so I will have to go back once they have finished doing the renovations.
After spending a couple of hours in the museum it was time to go back to the hotel to check in, even though we had been in the museum for a little while I still had time to rest before the Paramore concert. I was really grateful for the rest because my leg joints where starting to play up.
So we left the hotel to head off to the Paramore concert at 5.45pm and it was great that we only had to get on one underground train because the Jubilee line took us straight from Westminster to Wemebly, I can't remember how long it took us to get there. We had decided not to be there for exactly 6 o'clock which was the time the doors opened so that meant when arrived we didn't have to stand in a queue.
The concert was excellent and Hayley Williams has the most amazing voice, it was just a shame that it went by so quick :-( but they did play for nearly 2 hours so you can't complain. The trip back from the arena to the hotel was pretty uneventful and when I got back all I did was take of my makeup and go straight to bed.
Monday 30 September 2013
Friday 27th September 2013
Today is the day that I am London bound but of course my body has decided to be very naughty and I have develop a stupid f***ing cold, oh well I am not going to let it ruin my weekend.
I was pretty stressed out this afternoon because I decided to take a nap so that I had enough energy for night time but I ended up sleeping longer then I wanted to and of course I had to rush to get packed, have a shower and change my ileostomy. Thankfully I managed to get everything done though and I think I possibly set a new record for change stoma.
The flight to Gatwick was delayed so we didn't end up getting to the hotel at Gatwick airport until after 11pm but the main thing is I am here and I can't wait for the Paramore concert tomorrow night.
I was pretty stressed out this afternoon because I decided to take a nap so that I had enough energy for night time but I ended up sleeping longer then I wanted to and of course I had to rush to get packed, have a shower and change my ileostomy. Thankfully I managed to get everything done though and I think I possibly set a new record for change stoma.
The flight to Gatwick was delayed so we didn't end up getting to the hotel at Gatwick airport until after 11pm but the main thing is I am here and I can't wait for the Paramore concert tomorrow night.
Thursday 26 September 2013
Thursday 26th September 2013
These last couple of days have been pretty much the same health wise accept now I also feel sick but a bit of good news is I phoned GI today and I have managed to score myself a GI clinic appointment for the 9th October, woohoo!!!!! Originally I was phoning GI to get stronger pain medication but I thought I would try my luck and see if there was any clinic appointments, I am sure I will be able to cope for another couple of weeks.
So I was really happy that I managed to get a clinic appointment so soon but my happiness didn't last very long because today I went to pick up my repeat prescription for dihydrocodeine from chemist to find that my doctor had refused to issue it. I was absolutely fuming how can they refuse to give somebody who has a crohn's flare, adhesions and fistula pain medication, especially when the pain meds you are on is not strong enough in the first place. So I phoned my GP practice, spoke to a doctor and told them that they had to refill the prescription because I could not get a GI appointment for 2 weeks, he agreed to issue it but told me that I should make a review appointment with my normal GP but I said that there was no point in making an appointment until I had been to the clinic because they are the specialists and if they find it difficult to treat me then how on earth is a GP going to manage.
Tomorrow I am London bound and I am not going to lie I am a bit worried about this trip just because of the way I am feeling but hopefully having fun will distracted me from all the issues that I am having.
And one more thing and I can't believe that I nearly forgot to write about it, is I slept a full seven hours straight last night. It is so wonderful to get a full nights sleep for once and I really hope the same happens again tonight.
So I was really happy that I managed to get a clinic appointment so soon but my happiness didn't last very long because today I went to pick up my repeat prescription for dihydrocodeine from chemist to find that my doctor had refused to issue it. I was absolutely fuming how can they refuse to give somebody who has a crohn's flare, adhesions and fistula pain medication, especially when the pain meds you are on is not strong enough in the first place. So I phoned my GP practice, spoke to a doctor and told them that they had to refill the prescription because I could not get a GI appointment for 2 weeks, he agreed to issue it but told me that I should make a review appointment with my normal GP but I said that there was no point in making an appointment until I had been to the clinic because they are the specialists and if they find it difficult to treat me then how on earth is a GP going to manage.
Tomorrow I am London bound and I am not going to lie I am a bit worried about this trip just because of the way I am feeling but hopefully having fun will distracted me from all the issues that I am having.
And one more thing and I can't believe that I nearly forgot to write about it, is I slept a full seven hours straight last night. It is so wonderful to get a full nights sleep for once and I really hope the same happens again tonight.
Wednesday 25 September 2013
Tuesday 24th September 2013
So I have had a crap couple of days regarding my health, the fistula is definitely leaking more and my pain medication is not strong enough some of the time. I think the time has come where I need to start those humria injections, which I am still not completely happy about but needs must I suppose plus there is nothing else to take at the moment apart from the humria.
I managed to get out of the house and go into town today which did me the world of good, even though I didn't have a successful shopping trip. The main reason I went into town was to get trousers for going away this weekend but unfortunately when you have bad bloating and an ostomy it makes it really difficult to find some, so that means it's legging's all the way for this weekend and fingers crossed it is not to cold.
I managed to get out of the house and go into town today which did me the world of good, even though I didn't have a successful shopping trip. The main reason I went into town was to get trousers for going away this weekend but unfortunately when you have bad bloating and an ostomy it makes it really difficult to find some, so that means it's legging's all the way for this weekend and fingers crossed it is not to cold.
Monday 23 September 2013
Sunday 22nd September 2013
So yesterday I may have forgot to write an entry but honestly nothing that interesting happened apart from I was able to eat a whole chicken pasta dish without choking myself, woohoo. My oesophagus is one strange thing because ever since I had the really bad pain I have been able to eat everything, granted it takes me longer to eat than a normal person and it does tend to stick but the main thing is it is going down.
Today has been an uneventful day, I have had a few gut issues but I think that is to do with adhesions and also because of the pain I have been sleeping for most of the day. Writing these daily diary entries shows just what a boring life I lead, I really have to start doing something more interesting with my days.
Today has been an uneventful day, I have had a few gut issues but I think that is to do with adhesions and also because of the pain I have been sleeping for most of the day. Writing these daily diary entries shows just what a boring life I lead, I really have to start doing something more interesting with my days.
Friday 20 September 2013
Friday 20th September 2013
So I didn't write a diary entry yesterday night because I tried to get an early night but it didn't quite work out as planned. I fell a sleep and 9.30pm and was wide awake by 2.30am, so as you can probably guess I slept from 12pm to 5.30pm this afternoon.
This week entries have been all about unhappy things so I think it is about time I speak about things that make me happy. I finally got my hands on the Kevyn Aucoin Making Faces book.
I couldn't get my hands on a new copy here in the UK so I finally plucked up the courage to buy a used copy from amazon. I was pretty worried about what condition it was going to be in but it is such good condition that you wouldn't even know that it is used.
This time next week I will have arrived at Gatwick airport, I seriously cannot wait for next week I always love being able to get away from the daily grind of problems. I know that getting away doesn't make your physical health problems go away but it really does help with the depression.
Thursday 19 September 2013
Wednesday 18th September 2013
Today's diary is going to start like most others, I didn't get to sleep until 6am in the morning so I slept until 5.30pm this evening. This insomnia is really getting out of hand again, I think I am going to have to stay up all night and all day to try and get myself back into a good sleeping pattern because I cannot be like this for going to London.
So I slept on the decision I made yesterday not to have another oesophageal dilation and I still feel the same way today, now I just have to speak to my GI consultant about it and hope he agrees with my decision.
So after hunting for weeks for a new copy of the Kevyn Aucoin Making Faces book and not being find one, I decided to purchase a used from amazon. It's the first time that I have ever purchased something that is used from amazon, it said that it is was in very good condition but I am still a bit worried that it won't be as described. I'll just have to wait and see what happens.
So I slept on the decision I made yesterday not to have another oesophageal dilation and I still feel the same way today, now I just have to speak to my GI consultant about it and hope he agrees with my decision.
So after hunting for weeks for a new copy of the Kevyn Aucoin Making Faces book and not being find one, I decided to purchase a used from amazon. It's the first time that I have ever purchased something that is used from amazon, it said that it is was in very good condition but I am still a bit worried that it won't be as described. I'll just have to wait and see what happens.
Wednesday 18 September 2013
Tuesday 17th September 2013
So guess what.... that's right I didn't get to sleep until 6am this morning so that means all I have done today is sleep.
Today I finally made the decision about getting oesophageal dilation's done and I have decided to stop having them, well for the moment anyway. The reason why I have taken this decision is I think there is no point in putting my body through eveyrthing just for stricture's that are not going to stay open for a month. It is going to be really hard to adapt to a life with no food but I am sure I will learn, I have managed to learn how to live with Crohn's so why I can't I adapt to living without food.
Today I finally made the decision about getting oesophageal dilation's done and I have decided to stop having them, well for the moment anyway. The reason why I have taken this decision is I think there is no point in putting my body through eveyrthing just for stricture's that are not going to stay open for a month. It is going to be really hard to adapt to a life with no food but I am sure I will learn, I have managed to learn how to live with Crohn's so why I can't I adapt to living without food.
Monday 16 September 2013
Monday 16th September 2013
Last night was an absolutely crap night I had bad burning pain in my oesophagus so I didn't get to sleep until 5am and because of that I slept until 3.30pm.
I may look happy on the outside but at the moment I am just fed up with everything and I am struggling to take an interest in anything, even the things that I love to do. I really wish they could do something with these strictures to stop it from coming back, I can easily live with the Crohn's in my bowel but having it in my oesophagus with the strictures makes life very difficult. I have just got to hope that one day they will be able to fix them someday.
I may look happy on the outside but at the moment I am just fed up with everything and I am struggling to take an interest in anything, even the things that I love to do. I really wish they could do something with these strictures to stop it from coming back, I can easily live with the Crohn's in my bowel but having it in my oesophagus with the strictures makes life very difficult. I have just got to hope that one day they will be able to fix them someday.
Sunday 15 September 2013
Sunday 15th September 2013
So it's Sunday again and that means another week is over and I am so glad to see the back of this week. Today has been all about rest and sleep in preparation for a busy-ish next week, also today I have been in a pissed of mood due to my insomnia coming back and having a restricted diet is starting to get to me because I can't eat a variety of different foods.
Now I know what everybody is going to say, "you should be grateful that your able to eat something." I am grateful that I am able to eat something but when you see people eating the food that you want to eat and you have to eat the same thing day in day out it does get pretty annoying.
Now I know what everybody is going to say, "you should be grateful that your able to eat something." I am grateful that I am able to eat something but when you see people eating the food that you want to eat and you have to eat the same thing day in day out it does get pretty annoying.
Saturday 14 September 2013
Saturday 14th September
I am finally feeling almost back to normal or has normal as a Crohn's suffer can feel. I didn't get much sleep last night so that means I slept to 1pm so I really didn't do much today but I did manage to finally get my Invisible Illness awareness week blog post. The blog post wasn't exactly the post that I was hoping to do but the main thing I got something posted.
I can't believe that two weeks today is the Paramore concert in London, I can't wait. Going to a Paramore concert is another thing I tick off my bucket list, it will be the second thing that I am ticking off my list this year.
I can't believe that two weeks today is the Paramore concert in London, I can't wait. Going to a Paramore concert is another thing I tick off my bucket list, it will be the second thing that I am ticking off my list this year.
Friday 13 September 2013
Friday 13th September 2013
So I didn't write yesterday because I felt so rubbish and ended up going to bed at 7.30pm, I slept for 12 hours straight and then had a 3 hour nap in this afternoon.
Thankfully today I am feeling so much better and I have finally worked out what was causing me the high temperature, sickness and another stuff, it was my the time of the month. I never knew that time of the month could cause you to be so ill, I am so not looking forward to this happening every month.
Yesterday in the mail I got an appointment letter through for seeing my colorectal surgeon, it will be very interesting to see what she says about my non healing surgical wound which I will have had for 5 years at the end of next month. I really can't believe that it will be 5 years next month since I had my first ostomy.
Thankfully today I am feeling so much better and I have finally worked out what was causing me the high temperature, sickness and another stuff, it was my the time of the month. I never knew that time of the month could cause you to be so ill, I am so not looking forward to this happening every month.
Yesterday in the mail I got an appointment letter through for seeing my colorectal surgeon, it will be very interesting to see what she says about my non healing surgical wound which I will have had for 5 years at the end of next month. I really can't believe that it will be 5 years next month since I had my first ostomy.
Thursday 12 September 2013
Wednesday 11th September 2013
Today my temperature finally went back down to 36.6C thank goodness. I am still feel pretty rubbish though but hopefully this is the beginning of me getting better because I really, really, really want to go to London in just over 2 weeks.
Thankfully the piece of pasta that was stuck in my oesophagus shifted last night so today I was able to eat and drink today, I am so gratefaul that it moved because I am mentally not ready to go back to flushing water through my PEG tunbe every hour for the whole day.
So seeing as I have been unwell for a week I thought I deserved to take advantage of the 10% of beauty and fragrance at Debenhams, I know I shouldn't have because I don't have a lot of money but I always believe that once you have come through a bad period of health you deserve to treat yourself to your favourite things and my favourite things are makeup.
Thankfully the piece of pasta that was stuck in my oesophagus shifted last night so today I was able to eat and drink today, I am so gratefaul that it moved because I am mentally not ready to go back to flushing water through my PEG tunbe every hour for the whole day.
So seeing as I have been unwell for a week I thought I deserved to take advantage of the 10% of beauty and fragrance at Debenhams, I know I shouldn't have because I don't have a lot of money but I always believe that once you have come through a bad period of health you deserve to treat yourself to your favourite things and my favourite things are makeup.
Wednesday 11 September 2013
Tuesday 10th September 2013
I am losing the battle against whatever is causing my temperature. I am not in any pain or feeling sick and there is no sign of a UTI (urinary tract infection) which is the infection that I normally get, my ostomy is working fine, I have no cough or chest pain so that would rule out a chest infection, I am completely stumped.
Today hasn't been a good day for eating either I managed the mince and tatties (potatoes) that I had for my lunch no problem but I had pasta for supper and a piece of pasta got stuck in the oesophageal stricture at the top and as I am writing this it is still stuck there and I am finding it hard to drink.
And the final bad thing is my cat's leg is worse today. :-( She had her 2nd dose of anti-inflammatories this evening so I really hope they start working soon.
All in all today has been a crap day.
Today hasn't been a good day for eating either I managed the mince and tatties (potatoes) that I had for my lunch no problem but I had pasta for supper and a piece of pasta got stuck in the oesophageal stricture at the top and as I am writing this it is still stuck there and I am finding it hard to drink.
And the final bad thing is my cat's leg is worse today. :-( She had her 2nd dose of anti-inflammatories this evening so I really hope they start working soon.
All in all today has been a crap day.
Monday 9 September 2013
Monday 9th September 2013
I have finally solved the candle issue which hopefully means no more arguing with mum over them. I have found a electric tart burner on the Yankee Candle website.
Now it is not the most attractive thing but if it means I can still have the lovely Yankee Candle scents then I don't care.
Today has been pretty much the same as the other day's health wise accept today I have develop 2 cold sores and an ulcer on my tongue. I don't if I should phone my GI or not because I am really scared that if I do that something will happen like being admitted to hospital and then I won't be able to go to London to see Paramore at the end of September.
So I had to take my kitty cat Snowball to the vet this evening with her sore leg, the vet examined her the best she could and said that Snowball has inflammation in her hip. The vet gave her a 7 day course of metacam but if she is still having problems after she has finished the metacam I will have to take her back to the vet so they can sedate her to get a proper look at the hip and they will also do an x-ray.
Now it is not the most attractive thing but if it means I can still have the lovely Yankee Candle scents then I don't care.
Today has been pretty much the same as the other day's health wise accept today I have develop 2 cold sores and an ulcer on my tongue. I don't if I should phone my GI or not because I am really scared that if I do that something will happen like being admitted to hospital and then I won't be able to go to London to see Paramore at the end of September.
So I had to take my kitty cat Snowball to the vet this evening with her sore leg, the vet examined her the best she could and said that Snowball has inflammation in her hip. The vet gave her a 7 day course of metacam but if she is still having problems after she has finished the metacam I will have to take her back to the vet so they can sedate her to get a proper look at the hip and they will also do an x-ray.
Sunday 8 September 2013
Sunday 8th September 2013
Today has just been the same as the last few days, in bed with a high temperature. I was thinking about phoning the doctor tomorrow but I am going to have to put that on hold because I am going to have to take the cat to the vet because she has hurt her leg.
I really need to get back on track with my fitness regime next week after doing nothing last week, everybody says to me that I should rest but if I did that every time Crohn's decided to act up I would always be in bed plus I need to get my body in good condition just in case I have to have an operation on my oesophagus.
I have had lots of blog post ideas over the weekend for my Crohn's and beauty blog so that will keep me busy for most of the week as well, I always like it when I have a good number of things to do it distracts me from my poor health.
I really need to get back on track with my fitness regime next week after doing nothing last week, everybody says to me that I should rest but if I did that every time Crohn's decided to act up I would always be in bed plus I need to get my body in good condition just in case I have to have an operation on my oesophagus.
I have had lots of blog post ideas over the weekend for my Crohn's and beauty blog so that will keep me busy for most of the week as well, I always like it when I have a good number of things to do it distracts me from my poor health.
Saturday 7 September 2013
Saturday 7th September 2013
Guess what I did today? That's right absolutely nothing, I didn't sleep at all last night so I think my insomnia has decided to come back again. Words can not describe how pissed off I am, I have had a great 3 weeks of proper nights sleep and now it has gone back to the way it was before.
I just realised that yesterday was 4 weeks since my oesophageal dilation and my diet is restricted again. These last few days I have been thinking is it worth while putting my body through the stress of a general anaesthetic and dilation for something that only stays open a couple of weeks. At the moment I don't think it is worth it but that might change in the next couple of weeks once the really bad hunger sets in.
I just realised that yesterday was 4 weeks since my oesophageal dilation and my diet is restricted again. These last few days I have been thinking is it worth while putting my body through the stress of a general anaesthetic and dilation for something that only stays open a couple of weeks. At the moment I don't think it is worth it but that might change in the next couple of weeks once the really bad hunger sets in.
Friday 6th September 2013
Today I did absolutely nothing because I had a really rubbish night last night and hardly got any sleep plus today I have still been feeling crap. The most exciting thing that happened to me today was that my stoma (ostomy) bag decided to burst again, it wasn't until it burst that I realised that the stoma nurse never did phone me back last Friday. I phoned a week past Thursday and left a message because I wanted to know what I should do about the bursting ostomy bags and I also want to know how I go about getting 2 piece bags because my fellow IBD friends Amy and Charlotte say they are a great type of bag.
Also today I was looking online at some Halloween decoration's to cheer myself and before people say anything yes I know I am 25 and I am not a kid anymore but I just love celebrating any type of holiday. I managed to find this really cool lantern but it is quite expensive at just over £20.
It does look like it is worth the £20 though and I can make it the only Halloween decoration that I buy this year.
Also today I was looking online at some Halloween decoration's to cheer myself and before people say anything yes I know I am 25 and I am not a kid anymore but I just love celebrating any type of holiday. I managed to find this really cool lantern but it is quite expensive at just over £20.
It does look like it is worth the £20 though and I can make it the only Halloween decoration that I buy this year.
Friday 6 September 2013
Thursday 5th September 2013
Today has not been a good day, I have been feeling rough all day and it ruined my plans for this evening. I try really hard to not let my illness control my life but today it won, I really hope that this is just a small hiccup and it will only last for a couple of days.
I nearly had a full blown row with mum this afternoon because she told me that if we move house I wouldn't be able to burn candles which is so unfair. I don't want to give up my candles because they are one of the things that I enjoy and burning candles is something that a person with a chronic illness must be allowed to do, I know that it will sound stupid to those who don't suffer from poor health. She said that if I didn't like it I could find my own place, there is nothing that I would like to do more but my finances at the moment do not allow it.
I nearly had a full blown row with mum this afternoon because she told me that if we move house I wouldn't be able to burn candles which is so unfair. I don't want to give up my candles because they are one of the things that I enjoy and burning candles is something that a person with a chronic illness must be allowed to do, I know that it will sound stupid to those who don't suffer from poor health. She said that if I didn't like it I could find my own place, there is nothing that I would like to do more but my finances at the moment do not allow it.
Wednesday 4 September 2013
Wednesday 4th September 2013
This morning I woke up feeling like I haven't slept even though I had 7 hours sleep, it must be due to the 7am starts all this week but thankfully today is not as warm out so that means the grumpy bitch has disappeared.
Today I decided to try food that wasn't my safe foods and it wasn't a good idea. I had one packed of Doritos crisps (chips) left in the cupboard so I decided to try and eat them, after I struggled to eat a few I finally choked on one. I will obviously just have to stick to my safe foods, the only thing I find with doing that is I don't get all the vitamins and minerals that I need but I suppose that is what the PEG feed is for.
Also today I have been really struggling with sickness, it's bad enough that Crohn's makes you feel sick but the added sickness due to time of month on top of that can make it unbearable. I have been taking my anti-sickness tablets but they have not been making any difference today.
Now finally on the good thing that happened today my auntie does not have a blot clot, woohoo :-) but she does have a lung infection. :-(
Today I decided to try food that wasn't my safe foods and it wasn't a good idea. I had one packed of Doritos crisps (chips) left in the cupboard so I decided to try and eat them, after I struggled to eat a few I finally choked on one. I will obviously just have to stick to my safe foods, the only thing I find with doing that is I don't get all the vitamins and minerals that I need but I suppose that is what the PEG feed is for.
Also today I have been really struggling with sickness, it's bad enough that Crohn's makes you feel sick but the added sickness due to time of month on top of that can make it unbearable. I have been taking my anti-sickness tablets but they have not been making any difference today.
Now finally on the good thing that happened today my auntie does not have a blot clot, woohoo :-) but she does have a lung infection. :-(
Tuesday 3 September 2013
Tuesday 3rd September 2013
Today has been another roasting day with the temperature being 23C (73F). To some that may not be that warm but to me it is far to warm I am a winter girl, I really hope it is cooler tomorrow because the heat makes me very grumpy.
It hasn't been that bad of a Crohn's day and I haven't choked myself today which is a good thing but the most likely reason I haven't choked myself is, I ate only my safe foods which is pasta, beef mince, tatties (potatoes), and a cake.
Myself and the family got some bad news this evening, my auntie has been admitted to hospital with what they think is a blood clot but this women is a tough cookie she has colitis and won the battle against lymphoma twice so I am sure she will be fine.
It hasn't been that bad of a Crohn's day and I haven't choked myself today which is a good thing but the most likely reason I haven't choked myself is, I ate only my safe foods which is pasta, beef mince, tatties (potatoes), and a cake.
Myself and the family got some bad news this evening, my auntie has been admitted to hospital with what they think is a blood clot but this women is a tough cookie she has colitis and won the battle against lymphoma twice so I am sure she will be fine.
Welcome to my Diary
Hello everyone and welcome to my new blog. If you have followed me on Twitter and Facebook you will know that my Crohn's Quine Diary was originally on tumblr but I have now decided that I want to have all my blogs on blogspot.
What I will be writing on this blog is pretty much self explanatory, I will be trying to write diary entries as much as possible but I can't guarantee that it will be everyday.
Hopefully this blog will reassure people that they are not alone in their suffering and maybe it will even show the people who do not have chronic illnesses how hard are our lives can be.
What I will be writing on this blog is pretty much self explanatory, I will be trying to write diary entries as much as possible but I can't guarantee that it will be everyday.
Hopefully this blog will reassure people that they are not alone in their suffering and maybe it will even show the people who do not have chronic illnesses how hard are our lives can be.
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