Thursday 25 January 2007

More sea pictures





These paintings are very different from the vase, as they are so jolly and bold in colour but I love them because they are so cheerful. I love the use of primary colours particularly. I bought these paintings in my favourite gallery in Cornwall, not that far from The Eden Project. Apologies for the poor quality of the photo - I have A LOT to learn about photography!

Calming Sea images







I LOVE the sea and have many happy memories of walking along beaches, sitting on beaches and playing in the sea. I find that just standing on a beach, gulping the beautiful fresh sea air makes me feel better and clears my mind.

Last year, in October around my birthday, we visited a gallery in Gloucestershire and I spotted this beautiful vase, which for me just conjurs up some of the best memories/images of the sea and the countryside rolled into one. It reminded me of many a clifftop walk I have been on, especially in Pembrokeshire in Wales. This little vase reminds me of being in sand dunes or of being on top of a clifftop with greenery and flowers and other wildlife all around, and looking out over the sea. A wonderful feeling. So I just HAD to have this vase and thankfully I got it as a birthday pressie! Yippeee!


All done!

Well my treatment is all over now for another 4-8 weeks (I never know exactly how long it's going to be as it all depends on how I am). I am SO relieved that I have had it now because I was starting to get a little desperate with feeling so ill. Right now I don't feel brilliant, although I reckon I am already a tiny bit better, so I know that after a few days to a week, I should start to notice the positive results. Hooray! Bring it on!

The treatment day itself was a little bit nightmarish, with long waits until it actually started and then a lot of torturing with needles (they couldn't get the needle in, and rarely can without a fight because apparently I have tiny veins and they are fed up of being mucked about with, but in the end they got an anaesthetist who managed it!). Then I had a reaction to one of the drugs they give me before the infusion, and my veins all swelled up and went red and there was this huge rash, and so in the end they had to miss out on some of that drug and just get on with the infusion. They did it much slower though, to help minimise any nasty reactions. I was there for a while, but at least its all done and dusted.

BTW: apologies for boring anyone reading my blog at the moment. I'm sorry that my posts about my health etc probably doesn't seem very exciting, but as I am still recovering and not feeling that well, I don't have a lot of wildly exciting things to say. But hopefully that will improve as time goes on and I start to be able to live properly again. Love me xx

Monday 22 January 2007

Green light for treatment!

Yippeee! My I'm a happy girl today, as have been given the green light to go ahead and have my treatment tomorrow. I had a blood test this morning and although my white cell count isn't the best it could be, they feel its at a safe enough level for me to have Infliximab, so I am VERY happy. I know it seems silly getting all excited about having some treatment, but it means a hell of a lot to me, because it will hopefully mean that I will start feeling better again (I have been going even more downhill these past 3-4 days with severe pain, nausea, severe loss of appetite, and a million zillion trips to the loo). So hooray for groovy blood test results! Love ya xx

Wednesday 17 January 2007

The Impatient Patient!

Yes, well that would be ME! I hate to admit it, but I am getting rather impatient at the moment with my recovery, and wish it would just hurry up! To be honest I do find it quite hard letting myself just rest, as it's not really something I do that often, and when I do, I don't think I probably do it very well. I probably need some lessons in relaxing and taking it easy. It's mad really, especially seeing as normally in my job I am always helping other people to relax and unwind and de-stress, but I need to take some of my own advice and look at myself for once. I am TRYING, but my head doesn't stop spinning with stuff that I want to achieve this year, but when I try to do something my body kicks in and says NO, NOT YET. My friends tell me to give myself a break and to just give into my body's requests, and I know they are right, but it is just so hard. Don't get me wrong, I know how important it is to rest because my body has been through A LOT and that in the long-run it will be much better for me if I just let myself have this time, but try telling my head that! And the problem with me is that I just love life and can't wait to do more lovely exciting things, and it's kinda tough sometimes when you don't even feel well enough to watch your favourite programme all the way through (my eyes go all blurry and my head spins and I feel all faint). I am missing dancing like mad too, but know it's going to be quite a long while before I'm back to that (sob sob!). Well today, I have decided I have got try much harder at just trying not to get too excited or worry about all the things I'm just ITCHING to do and I have just got to CHILL OUT (yeah man!).

Being so happy that I'm here!

Every day I am grateful to be here and the fact that I have survived ANOTHER trauma. And I honestly am SO grateful. In fact grateful isn't really the right word, but I can't think of one that is good enough to describe the sheer elation at getting through another operation and that I am still alive. It is truly amazing. I do wonder if maybe I am a really a cat with 9 lives, because I have come back from near-death so manytimes now, I have lost count. I do wonder how many more chances I have left, if any, and I really don't want to have to find out, and it's no use thinking about it.

Another infection

I've now got another infection, which means I am back on the antibiotics, and they have made me more ill than I was, which has been a bit hard to deal with. I keep feeling I am taking steps back. I know in the big picture I am probably not, it just feels like it sometimes and it really is best to just think lovely positive happy thoughts. The hardest thing was the fact that my really important treatment (which I REALLY need and is the one hope to try and get me/keep me well) has had to be delayed because of my infection. It's because the treatment I am on (Infliximab) can make an infection a hundred times worse and therefore it can be really serious. But at the same time, I do really need my treatment to try and keep my crohn's disease at bay. But hopefully it won't be long before I will be able to have it again. There is talk that MAYBE I will have it next week (hooray!), all depending on my blood results, so fingers crossed. If my bloods levels aren't good then I will have to wait a bit longer until they are. Hopefully it won't be long anyway. I've just got to keep positive and be PATIENT! Here's to patience x

Teddy P


Just thought I would include a picture of my teddy, which one of my nurses decided to "put him to bed" in a hospital bed pan no less and tuck him in with incontinence sheets! She has tried to think of nearly every detail - including over the bed sign, saying "NBM" (Nil By Mouth), a patient ID wrist-band, a pink sponge for mouth care, and a nurse call button. She did all this whilst I was asleep one day, and so when I woke up I was rather surprised to find him! My nurse was a bit mad, but very lovely and she said she thought it would cheer me up a bit. It certainly did that! So thank you sweet funny nurse x x

Thursday 11 January 2007

Crohn's - the symptoms, related problems and treatments

What is it?

Crohn's disease is known as an inflammatory bowel disease(IBD). It is also thought to be an auto-immune disease, where basically the body attacks itself. It is chronic (life-long) and incurable, and it is also very serious. People CAN die from crohn's.

Crohn's basically is inflammation, which can present anywhere from the mouth to the anus, all the way through the digestive tract. Most commonly however, it affects the lining of the small and large intestines. When inflammation is present, it can cause ulceration, bleeding, swelling, and can cause narrowing and obstruction. There are many many symptoms of Crohn's disease including: pain, diarrhoea or constipation, vomiting and nausea, severe weight loss, bleeding from the rectum, joint and bone pain, mouth ulcers, skin rashes, eye problems, and extreme fatigue. There are also alot of problems which can occur which are as a result of the effects of Crohn's (eg. if someone cannot absorb the nutrients they need from food, or from some of the medications that they have to take). Commonly anaemia is a problem, and increasingly people are getting diagnosed with osteoporosis as a result of prolonged steriod use. However, there are numerous other problems which can also occur.

Who can get Crohn's?

Anyone can get Crohn's and at any age, although it most commonly seems to occur in younger people in their late teens or early twenties
.

Narrowing in the intestines

If narrowing occurs in the small intestine it is serious as it can stop food passing through, and as the walls of the intestine are damaged by the disease, nutrients cannot be absorbed properly, if at all, and the person can suffer from severe malnutrition and lose a lot of weight. Also, the narrowing can cause vomiting, because food simply cannot get through where it is supposed to and so there is a backlog and it just comes up again. The aim is to try to suppress the inflammation so that it does not cause any more damange in the body, but sometimes people fail to respond to treatments and it is difficult to control the disease. If a person is able to tolerate certain drug treatments and their bodies respond well, then they may enjoy some periods of remission. However, for many it is a very different story, and they suffer every single day with the awful effects of Crohn's, and end up having many operations. Some cannot work for long periods of time, or not at all as they are just too ill. Some find it hard to maintain relationships and can end up feeling really isolated. For some it is a never-ending battle.

Permanent narrowing/scarring

If the inflammation is not treated with medication, then it can lead to scarring of the intestines, which is permanent damage. It is basically hardened inflammation. This scarring is a permanently narrowed part or parts of the intestine, causing severe problems with food and other nutrients. When this occurs, major surgery is often the only option, to either remove (cut out) or refashion (eg. stretch) the part of the diseased and scarred intestine. This can be a fairly long process, depending on how bad the damage is, and also how many damaged pieces there are. Sometimes, it is necessary for the person to have an ileostomy bag fitted (where a hole is made in the abdominal wall, and the intestine is pushed through a hole and is visible, and is where faeces are expelled from the body and collected into a bag which is attached/stuck onto the skin). Sometimes an ileostomy may only be a temporary measure in order to give the intestines a rest, but sometimes it is required for life. Whenever someone has this procedure, it can be quite a shock and can take a lot of adjusting to as it is life-changing.

Drugs to control Crohn's disease

There are many drugs available to help control the inflammation caused by Crohn's disease. There are various anti-inflammatory drugs (which are basically non-steriodal), and these can be used for patients with mild to moderate disease, or sometimes in conjunction with other drugs. There are also steroids (often a not so favoured option by patients because of the MANY both short term and long term side-effects). There are also immunosuppressant drugs, which basically suppress the immune system. These can work well in some patients, but the downside is that their immune system is lowered quite considerably and patients are then vulnerable to all sorts of bugs and infections. Regular blood tests are needed to check white cell counts in these cases. There are also some antibiotics which can sometimes be particularly useful following major surgery, but can only be used for short periods of time. And then a bit more recently, there is another immune suppressant drug which actually directly kills certain cells in the body which produce inflammation. This drug is known as Infliximab (or Remicade). It is a very expensive drug and is given as an infusion, where the patient has to attend the hospital often as a day patient to have it infused directly into a vein over a number of hours. Infliximab is often given to patients who have exhausted all other medication routes to no avail, although is now starting to be used more freely on newly-diagnosed patients and newer-patients to try and ensure that their disease is kept under control. Some patients only have this drug a few times and then stop it and are well again. However for many others, they will have to continue on it indefinitely. Also some people can survive having it just 8 weekly, whereas others have to have it more frequently like every month. It depends on the severity of their crohn's disease.

More about Infliximab (Remicade)

Infliximab is still a relatively new drug and as a result there is still a lot to be discovered as to how exactly it might affect a person longer term and caution has to be used. However, already there are a long list of known possible side-effects, some of which are shorter term, or immediate (ie, when the drug is actually being infused, some people have very severe/life-threatening allergic reactions to it), and some are more longer term. It is very important for someone on this treatment to be extra careful about coming into contact with germs, as catching something could make them very ill, and once someone has developed an infection, he/she cannot have their treatment if it falls around the time they are due, as it could have serious consequences.

Infliximab can also be quite complicated in that if a patient has to stop being on it for some reason (eg. because of surgery, or because they have an infection), if it is left too long for the next infusion, antibodies can be made, and then the body will reject it. Also, some medics believe that infliximab can delay wound healing or cause bleeding, and so this can cause problems, especially if someone is having surgery. So there are many factors to consider.

However on the positive side, Infliximab does seem to have helped a lot of people with Crohn's, and often where all other drugs have failed, it has been successful.

Elemental/liquid diets for Crohn's disease

Quite often, when patients are struggling nutritionally, because of the body's inability to absorb nutrients, patients are put on elemental diets which are basically liquids which contain all the necessary nutrients required for a balanced diet, but are all broken down already, to aid absorption. Sometimes patients use these diets as just a supplement to their normal food, but others are fed like this completely and do not consume normal food at all (at least for several months at at a time). Some patients require a feeding tube so that they can be drip-fed. These diets can really help with children especially, because it should help them to get the right nutrients they need to grow and develop properly.

What's the future?

Well I guess none of us really know, but there is always research going on, and all us Crohn's sufferers can do is to hang in there, and keep hoping and keep positive that one day a cure will be found. PLEASE!!

Tuesday 9 January 2007

My Top Healing Tips

Since I am recovering from my op (sorry to go on about it YET AGAIN), I thought I would share with you some of my top tips for aiding recovery after an operation - especially a bowel operation (coz I don't have any experience of any other operations). And please note, I am not taking into account any allergies or intolerances that anyone may suffer with, or the possibility of developing heart disease or high cholesterol caused from over eating too much high calories stuff, or the possibility of developing tooth decay. So if in doubt, please see a dietician.



1. Eat maltesers as much as you can throughout the day. A bucket-sized one is probably best as you can just sit on the sofa and relax and you don't have to keep getting up for more packets! (helps nutritionally to build you up and of course helps keep your emotional health in check too).

2. Eat lots of Jelly Babies throughout the day. These are especially good if you have diarrhoea as they help to "bung you up", and a much nicer way than taking horrid medicine. Also good of course for helping pile on those calories lost.

3. Eat lasagne several times a week - especially if cooked by someone else who is FABULOUS at cooking, as it saves on you washing up all those pots and pans. Lasagne basically contains everything you will need nutritionally for wound repair!

4. If cannot bear to eat a proper meal, then at least have rice with a bit of grated cheese, as it will help settle the stomach. (in actual fact this was the only thing that I could keep down at first).

5. For your scar/s and also dry/dehydrated skin - use Bio Oil, which you can get from most chemists/pharmacies. This is a truly AMAZING product and really does the job. It smells nice too.

6. For fighting off any coughs and colds - use Vicks First Defence nasal spray. Since I have been using it, I have been cough and cold free - touch wood.

7. Use crystals for pain ( also hold an appropriate one at night). For my wound I use bloodstone. Dowsing with amethyst is also v good for pain I find.

8. For dry lips use Vaseline with aloe vera lip therapy - pocket sized good for carrying around.

9. Laugh a lot - good for your mood. Watch as many comedy dvds as you can tolerate without going mad.

10. Think positive about the future. Even if it might seem like you are going through hell (or have been going through hell), hopefully the fact that you are reading this blog, might mean that you are on the up and you are getting better. So hoorah for you! You should be very proud of yourself for getting this far. And things can only improve from now on, with any luck. And incase you are feeling a little sad or down right now, just picture me sending you a big hug (hope the thought of this doesn't make you feel worse and I apologise profusely if it does).

I think I could probably go on and on, but I will stop now coz am probably boring you to tears.

Dotty things!




I just LOVE dotty things, so I thought that I would share with you just a few of my newer dotty stuff, coz I reckon they are pretty cool. I particularly love red and white dots, and have several tops in those, and wear them a lot dancing. I think everyone thinks I am dotty! (and they would be right!). xx

Happy and Healthy New Year!

I just wanted to wish all you gorgeous people a very happy and healthy new year, and may all your hopes and dreams come true for you in 2007.

My main aim for this year is to recover well from my operation and to stay well! However I do have some other goals that, health permitting, I would like to achieve(well to be honest I would like to achieve them anyway). The main ones are:

1) Start my web design course and pass
2) Create my own new groovy website so I can sell some lovely stuff
3) Start my new business, which basically ties in with above
4) Allow myself more time to reflect on stuff, and to have the space (eg, away from others sometimes) to do that

Happy goal-setting and achieving! Love me x