Thursday, 16 August 2007
Clouds mixed with rain and heat!
These pics were taken when it was pretty hot, but a cloud had descended on us and it had decided to rain. Sometimes I can't see anything out of the window as there is cloud hanging there. It is quite a weird feeling, being so high up that you are literally among the clouds!
Hello from France!
Hey folkes! Wow, it's been such a long time since I last posted. So sorry about that! But I have had some very big changes in my life, so it's taken me a while to get myself sorted. But here I am anyway!
My big news is that I have left the UK to live in France for a while. I say for a while, as I don't know exactly how long I will be here, whether it is temporary or permanent, but I guess I am just seeing what happens and how I get on. I so needed a change from my old life, that whatever happens, it is refreshing to be somewhere new and experience new things.
Living here is exciting but also poses many new challenges for me - eg. learn a new language (I never learnt one word at school, as I learnt German so am learning totally from scratch), and new culture and a whole new way of life. But I think it is all going to be very good for me. At least I hope so!
Saturday, 28 April 2007
Amazing Alps
Above: People sunbathing on top of mountain!
Below: View from the top
Above: View of mountains from town
Bonjour! Well here I am again after a lovely break in the French Alps. It was truly the most awesome holiday I have ever been on and I was utterly bowled over by it. I even tried skiing! (which I loved). I had SUCH an AMAZING time that words somehow seem inadequate. So here are just a few pics (I took over 400!). Although I may add some more later. Chow for now xx
Tuesday, 3 April 2007
Daffodils and Ducks!
Cliveden and Ewan McGregor!
Here are some pics of a National Trust place called Cliveden in Buckinghamshire. It is situated next to the River Thames and is one of my favourite places. Unfortunately on the day I went the weather was a bit grey, but in my opinion it still didn't spoil its beauty. PLUS when we walked back up the steep path from the Thames, I was absolutely stunned to see Ewan McGregor and his family coming towards us, and he said hello! We think there was a boat waiting for him with a picnic, as there were butlers all dressed up loading the boat up when we were buy the river.
And here is a real heron in the water
garden!
Sunday, 25 March 2007
Happy Scottish Holiday
Well I've had a wonderful time in and around Edinburgh with my special supercus and super sis. What an utterly gorgeous place it is, and it's got just the right mix of beautiful countryside and town with lots going on. I love it. We had a truly amazing walk which made me feel so peaceful inside. To be honest I loved it so much I didn't want to leave, but then that's got as much to do with the company as the place.
Sunday, 4 March 2007
Crohn's and Me (2nd chapter)
So I continued to go to school with a tube stuck up my nose! But now at least I had transport so I didn't have to struggle with buses and cruel school kids. One day I also got offered a new machine feeding pump, which was called a Kangaroo as it shaped a bit like a Kangaroo's pouch. This new machine had lots of groovy flashing lights and made funny noises so it pleased me! (little things have always pleased me!). My closest friends have sometimes called me Ruth-a-Roo because of me having to carry around my Kangaroo.
Unfortunately this total feeding regime was never enough to keep my Crohn's under control and I ended up having to take other drugs alongside it, including steriods for long periods, which I absolutely hated as they made my face blow up and had other unpleasant side-effects. They never did much for my morale, especially when I was a teenager, as I felt they made me look really ugly. So when one of the most fittest boys in my year asked me to be his girlfriend I was amazed. The steriods unfortunately never seemed to do me much good however and I was diagnosed with permanent stricturing (narrowing) of the intestines. This inevitaby meant I would surgery at some point.
However, one day my consultant was very excited at the prospect of a drugs trial that he wanted me to be a part of. This drug was thought to possibly dissolve permanent strictures, which had never been done before. And he thought that it would be worth a try, if it meant that maybe I could avoid surgery. So my parents and I agreed, and I tried it. The result seemed to be incredible. The difference in my before and after x-ray pictures was amazing. It literally seemed to have made my strictures disappear. As a result my x-rays were taken all round the world and are in several medical journals. However, unfortunately the drug never got a patent and I could not take it anymore as we could not get hold of it. It was gutting (excuse the pun!).
So, in June 1994, when I was 14, I was diagnosed with more multiple strictures (narrowings) of my small intestine, and I was told that I needed major bowel surgery. When the surgeons opened me up they were appalled to find 11 severe and long strictures, and they knew they couldn't cut out all of them, so instead they opted to cut out the most severe, and perform stricturoplasties on the remaining 9 (basically this involves cutting and stretching). Apparently at the end they rolled marbles through my intestines to make sure my intestines were wide enough for food! (if I could ever eat properly!).
I went through a tough time following that surgery, as I had all sorts of problems and complications following it. However, I got through it, and once I was fit enough, the nurses took me to see some of the bowel that had been removed in the laboratory. I was amazed at how swollen and large it seemed and couldn't believe it had once been a part of me!
I remember being told by my mother that the doctors felt my surgery wasn't very successful and was almost a waste of time. That didn't really help my mood, but I still fought to stay positive. There was no other option.
I was then prescribed some medication that was a immune suppressant drug, and although it meant that my immunity was lowered, the doctors thought it might help by combating the inflammation in my intestines. I also took a different kind of steriod (one which didn't cause so many nasty side-effects) at the same time. My mum at the time wasn't very well mentally and she thought that it might be "posessed by the devil" and threw my prescription out of the window. That was half difficult and half funny. But I took the drug anyway, as at the time, my doctors thought it was the way forward.
However, although the drug didn't really give me any bad effects that I know of, it didn't actually seem to do anything for my Crohn's either. My crohn's was still putting up a good fight. And I was still having to have a liquid diet, with no normal food. I was beginning to wonder if I would ever eat normally.
Just before my GCSE's I ended up back in hospital with a bad flare-up of Crohn's and my teachers and nurses didn't think I would be able to sit my exams. However, that was when I discovered mind mapping, and started creating mind-maps for all my subjects, cramming revision into the precious hour or so a day that I actually felt well enough to study. And of course this was in the hospital and there was a lot of distractions. It wasn't easy, but even though my teachers thought I might not be able to make my exams, I wanted to try. And I managed to get out in time to be able to sit them. There I was in the exam hall, attached to my feeding machine, and all the time it was whirring away and flashing. I don't expect it helped the concentration of the other pupils. But despite all that, I manged to just about get the grades I wanted to be able to go to college. So I was over the moon.
So I started at college, and studied for 2 years, and passed quite well. All the time I was studying, I was attached to my little machine! And then after college I applied to nursing colleges, to train to be a nurse. At that time, that was what I wanted to do. I think partly it was that I wanted to give something back to the medical profession, and all the years that I had received care, both in children's wards and as an outpatient. I managed to get in, to a nursing college in London. In the Summer before I started I wanted to see if I could manage without my machine, as I knew it might be tricky on the wards with my machine. And I so wanted a fresh start, and to be able to be more normal. And I wanted the same chances that everyone else would have. However, to be fair, in the interview I had told them all about my health problems and they still decided to give me a chance, for which I was ever so grateful. I just wanted to be a nurse so badly.
Unfortunately within about a month, I had to go back on the tube feeding, and although I coped with this fine, the head of nursing at my college wasn't happy at all, and basically wanted me to leave. He didn't think it was right that I nurse with a tube stuck up my nose. I couldn't understand what the problem was. If nurses in wheelchairs could nurse, then why couldn't I. But I had a battle on my hands, as basically I had no support. I went from tutor to tutor to try and find someone who would back me, and although I eventually found someone who was really understanding and could see my determination and desire to be a nurse, in the end she was worried for her job and didn't feel she could back me. I had a really hard time, in fact I would say that I was bullied by the man who didn't want me in his nursing school. He was so keen to try and get rid of me that he even sent for all my work, I presume to try and catch me out. But he couldn't. As my work was fine. But he could and did stop me going on placements. I battled for 2 years, but at the end of 2 years I kinda lost the fight as I found myself in a catch 22 situation. I needed to finish my practical work placements before I go any further, but the head of nursing wouldn't let me go on the work placements because of my feeding tube. On top of that, the stress had made my condition worse and my weight plummeted to 5 stone. In the end my boyfriend begged me to give up the fight. I so did not want to. In fact I wanted to fight on till the bitter end. But I knew that if I did, I might not still be alive. It was one of the hardest things I have had to do.
After that it was terribly hard as not only did I have to cope with the realisation that I could not achieve my dream, but I also had to move back home, as I had no money and nowhere else to go and I was told I need to rest and get better. And I felt like my family were saying "I told you so" as they didn't want me to go into nursing. But after a few months I decided that I needed to pick myself up again and re-train as something else. And I decided that training as a secretary would probably be the most sensible thing, as I learnt touch-typing at school and thought if I learnt other skills, then I would always be able to get a job as a secretary. So that's what I did. And then straight away I joined a temping agency and temped all over London. Health-wise I was still struggling, but I was mostly off the tube-feeding and was able to take liquid as a supplement to help keep me going nutritionally. I ate some normal food, although not much.
After a while, I decided that I wanted to do more than temping, and I was interested in learning reflexology. So I enrolled at a reflexology school and studied alongside working. I also changed my job to be nearer home so that I wouldn't have to be tired out with all the travelling, and started work at my local hospital. I began as a medical receptionist and then started as a medical audio typist and then gradually gained enough experience to be able to be a medical secretary. I enjoyed this as I liked all the medical terminology and the varied tasks. Soon, I was wanted by several different departments and I found it hard to choose. In the end I decided to split my time between each. And then I completed my reflexology course and became a fully qualified reflexologist.
Since being in Gloucestershire, I have had 5 more operations! Three of these were a result of bad complications post surgery, including internal bleeding, abscesses, widespread infection and such like. I have had an ileostomy, which has now thankfully been reversed.
I have also been put on a new-ish treatment, called Infliximab, which is quite a toxic drug, given through a vein every 6-8 weeks. So far it has done the most for me than any other drug I have been on, so I am praying that it will help me to stay well.
And that brings me up to date, as I am now recovering from my 6th operation. I am getting there - slowly but surely. I just hope that is my last operation and that I don't need anymore. And the hope is that now I've had this surgery, that the Infliximab treatment I am on, will get me and keep me well. I want to be well more than anything. It would make me SO happy.
Here's to health and happiness!
Friday, 23 February 2007
Blue Skies
The garden of beauty
Snowdrop heaven
On one of my very few ventures outside since my operation, I was blessed with visiting a beautiful garden full of snowdrops. It made me so happy to see them, that I became rather snap happy and took load of pics. It was a gorgeous sunny day as well, so it really was a wonderful outing for me. Hope you like them too!
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!
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!!
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.
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
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
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