Well, it seems that my appointment for 30th April has been supersceded, thank goodness. Got an appointment today for March 5th. That's just 6 days time. Phew! The appointment has been made a hospital that I've never been to before. I'm not sure where it is, but I think it's a couple of hours drive away. I guess it's a small hospital that my GI consultant holds a clinic at. I don't care if it's a big or a small place really, as long as a get a chance to speak to a specialist. I'm certainly getting rather fed up with not knowing where I am with my flare.
I am taking my Pentasa three times a day. At times I feel quite well, but then quite suddenly, and I haven't quite worked out the triggerfor it, I get horrendous bloating, followed by spasms of pain the following day. Today is one of those days. I felt fine yesterday, but this evening, I am really uncomfortable and I just know that tomorrow, the pain is going to come.
It will be interesting to see wha the consultant says. These symptoms are not what I experienced when I was first diagnosed with Crohn's. I would quite like some further investigations to see where the inflammation is and its extent.
Wednesday, 27 February 2013
Saturday, 16 February 2013
Got an appointment to see consultant
I got my letter through today for an appointment with a consultant gastroenterologist today. It's for 9:00am on 30th April 2013. Yes my friend, you read this right, today is 16 February. My appointment is over 10 weeks time!
I know the last time I saw my GP, which was 4 days ago, he was upgrading my referral to urgent. I sincerely hope that the letter I received today was already in the post when he did this, and that this isn't really an "urgent" appointment.
What worries me is that there must be people out there that are in far worse health than I am. I really hope that they are further up the waiting list!
I know the last time I saw my GP, which was 4 days ago, he was upgrading my referral to urgent. I sincerely hope that the letter I received today was already in the post when he did this, and that this isn't really an "urgent" appointment.
What worries me is that there must be people out there that are in far worse health than I am. I really hope that they are further up the waiting list!
Thursday, 14 February 2013
Quite a lot of pain today
It's amazing how we forget past experiences when it comes to pain. People often say that you forget the pain of childbirth almost immediately, and that it's an evolutionary mechanism - if you remembered what it was like then you wouldn't get pregnant again. When I was in labour with my second child I can remember saying "it hurts, I don't remember it hurting last time?!"
I haven't experienced any prolonged periods of pain with my crohn's for some years now. I think that I must have forgotten what it was like. I have been in quite a lot of pain today. I have short spasms of pain that wash over me suddenly for a few seconds and it takes my breath away. I have to stop what I'm doing momentarily as I wait for it to subside. I don't remember it being like that around the time that I was diagnosed but I'm sure if anything it must have been worse. By the time I was diagnosed, I had had diaorrhea for 6 months, lost 3 stone, and whilst working in a pub, often slipped into the cellar to quietly curl up whilst I waited for a pain to pass. I remember doing this. I also remember one particular occassion when a pain had come when I was in the middle of serving a customer. I thought I had done very well at completely ignoring it and continuing with my job, but the customer actually said to me. "Are you alright? You've gone white as a sheet."
I remember all of this, and yet I don't remember what the actual pain was like. The pain I have had today feels like the worst pain I've felt, and yet I'm sure that this is not the case.
This a very strange concept that raises many questions for me. Why is it that we do not remember the feeling of pain? Is it a trauma that we blank out because we don't want to remember it? Is it that it's a feeling that we experience in the moment, that doesn't enter the brain in the same way as, for example, a thought process. Perhaps that's it. It's a reflex response. We feel pain for example if we place our hand in a flame. If we didn't feel that pain, then we wouldn't automatically move our hand away.
What I do know, is that in a way I wish I did remember exactly what the pain in my gut was like. Then I would be better prepared when it comes on.
I haven't experienced any prolonged periods of pain with my crohn's for some years now. I think that I must have forgotten what it was like. I have been in quite a lot of pain today. I have short spasms of pain that wash over me suddenly for a few seconds and it takes my breath away. I have to stop what I'm doing momentarily as I wait for it to subside. I don't remember it being like that around the time that I was diagnosed but I'm sure if anything it must have been worse. By the time I was diagnosed, I had had diaorrhea for 6 months, lost 3 stone, and whilst working in a pub, often slipped into the cellar to quietly curl up whilst I waited for a pain to pass. I remember doing this. I also remember one particular occassion when a pain had come when I was in the middle of serving a customer. I thought I had done very well at completely ignoring it and continuing with my job, but the customer actually said to me. "Are you alright? You've gone white as a sheet."
I remember all of this, and yet I don't remember what the actual pain was like. The pain I have had today feels like the worst pain I've felt, and yet I'm sure that this is not the case.
This a very strange concept that raises many questions for me. Why is it that we do not remember the feeling of pain? Is it a trauma that we blank out because we don't want to remember it? Is it that it's a feeling that we experience in the moment, that doesn't enter the brain in the same way as, for example, a thought process. Perhaps that's it. It's a reflex response. We feel pain for example if we place our hand in a flame. If we didn't feel that pain, then we wouldn't automatically move our hand away.
What I do know, is that in a way I wish I did remember exactly what the pain in my gut was like. Then I would be better prepared when it comes on.
Wednesday, 13 February 2013
Blood tests and stuff
I have waited three days to see the Doctor about my blood test results, but it has felt like about a fortnight. I think it must be a sign that I am getting older. It is not like me at all to worry. I tend to think what will be will be.
Over those three days, all sorts of things entered my head. Maybe the results are negative, and the Doctor is going to tell me I don't have a flare and is going to cancel my referral. Maybe it's showing that I'm anaemic, perhaps it's suggesting that there is a cause for serious concern ....I even started to wonder whether the Pentasa might have some hideous side effect that nobody had told me about.
I actually felt quite nervous when I walked into the surgery. It turned out however, that it wasn't anything to be too alarmed at. My haemoglobin levels were a little low, but not dreadful. My red blood cells were a little low and my inflammatory markers were a little high.
This suggests that I am a little anaemic, which may mean I am bleeding, or I may be deficient in Iron, rather than losing blood. The inflammatory markers are showing that the Pentasa is helping, as I'm sure if I was not taking it then the inflammatory markers would be much higher (but this is speculation, and the Doctor didn't say this, it's just my interpretation). He took another blood test looking specifically for my iron levels. This would prove it was iron deficient anaemia rather than anything else.
Thankfully, the Doctor saw these results as evidence that I was having a flare, and therefore has upgraded my referral to the consultant to urgent. I guess this means, that I may get to the consultant sooner on a cancellation.
A cancellation would be good, as today I decided to try having vegetable soup, that my husband had kindly made for my lunch. This I think was a mistake. I have been very uncomfortable all day and there is distention in my upper abdomen, and loose stools. All very frustrating. Grrr!
Over those three days, all sorts of things entered my head. Maybe the results are negative, and the Doctor is going to tell me I don't have a flare and is going to cancel my referral. Maybe it's showing that I'm anaemic, perhaps it's suggesting that there is a cause for serious concern ....I even started to wonder whether the Pentasa might have some hideous side effect that nobody had told me about.
I actually felt quite nervous when I walked into the surgery. It turned out however, that it wasn't anything to be too alarmed at. My haemoglobin levels were a little low, but not dreadful. My red blood cells were a little low and my inflammatory markers were a little high.
This suggests that I am a little anaemic, which may mean I am bleeding, or I may be deficient in Iron, rather than losing blood. The inflammatory markers are showing that the Pentasa is helping, as I'm sure if I was not taking it then the inflammatory markers would be much higher (but this is speculation, and the Doctor didn't say this, it's just my interpretation). He took another blood test looking specifically for my iron levels. This would prove it was iron deficient anaemia rather than anything else.
Thankfully, the Doctor saw these results as evidence that I was having a flare, and therefore has upgraded my referral to the consultant to urgent. I guess this means, that I may get to the consultant sooner on a cancellation.
A cancellation would be good, as today I decided to try having vegetable soup, that my husband had kindly made for my lunch. This I think was a mistake. I have been very uncomfortable all day and there is distention in my upper abdomen, and loose stools. All very frustrating. Grrr!
Friday, 8 February 2013
Musings on the NHS
I often wonder how things are organised in this countries' health system. The usual opinion taken by most members of the public when they are worried about their own health is that the NHS is over worked, very inefficient and hopsital waiting lists and test results are dangerously slow.
I have mixed feelings about this. When my own health is not A1, then I want to see somebody about it, and the sooner the better. However, I also appreciate that I am not currently, and have not ever been more ill, and in more need that anybody else. There has always been somebody in greater need than me. Therefore, I have never really been impatient when waiting for an appointment, or when sitting in a queue in a waiting room, or awaiting test results. I tend to think, "no news is good news" If I have had tests done, and it takes a long time for results, that tends to be a relatively good sign in my experience. The only times when I have had phone calls telling me to make an appointment to discuss a test result, are when something has been discovered, and that usually means that currently, there is something wrong.
Now, considering in my last post I talked about the fact I was to have a blood test, and I wasn't expecting anything very much to show up on it, I was rather surprised today when I got home from work, I had two messages, from two separate offices aking me to phone them back! One was the Doctors surgery, and the other was the NHS referral management service.
I phoned the NHS referral management service first, thinking that it was probably to arrange an appointment with a consultant. I was right on this. However, when I phoned them, they took my name and date of birth and then asked if there were any days I couldn't make. I said No, as far as I knew, I could make any day I was offered. They then proceeded to tell me there currently were no appontments and they would send a letter, when they had fitted me in. This I found a little odd. Why did they ask me to call if they didn't have any space at the moment? Well, at least I know I am now in the system and when an appointment becomes available I will see a consultant.
Next I phoned my surgery. They told me that my Doctor would like me to discuss the results of my blood test. I was rather amazed at this. I only had the blood taken 36 hours ago! For a start I was expecting to wait at least a week - which could mean that the bloods went through as an urgent request - I didn't think myself as an urgent case, so why did my doctor?? (Perhaps it was just luck and the bloods arrived on a relatively quiet day in the lab ) The final thing this has left me wondering, is why did the Doctor want to discuss the results with me? I wasn't expecting them to show anything very much. Perhaps the things they were looking for would be a little raised, but not too bad. In previous experience, the only time I have been asked to make an appointment following a blood test is because something has been found. It could be that he wants to discuss the fact that the results are negative. After all we have both concluded that the symptoms I am experiencing are a crohn's flare up, and if the bloods are negative then perhaps we should be looking elsewhere....
I have arranged to see him at the beginning of next week. I am sure all will be revealed then.
I have mixed feelings about this. When my own health is not A1, then I want to see somebody about it, and the sooner the better. However, I also appreciate that I am not currently, and have not ever been more ill, and in more need that anybody else. There has always been somebody in greater need than me. Therefore, I have never really been impatient when waiting for an appointment, or when sitting in a queue in a waiting room, or awaiting test results. I tend to think, "no news is good news" If I have had tests done, and it takes a long time for results, that tends to be a relatively good sign in my experience. The only times when I have had phone calls telling me to make an appointment to discuss a test result, are when something has been discovered, and that usually means that currently, there is something wrong.
Now, considering in my last post I talked about the fact I was to have a blood test, and I wasn't expecting anything very much to show up on it, I was rather surprised today when I got home from work, I had two messages, from two separate offices aking me to phone them back! One was the Doctors surgery, and the other was the NHS referral management service.
I phoned the NHS referral management service first, thinking that it was probably to arrange an appointment with a consultant. I was right on this. However, when I phoned them, they took my name and date of birth and then asked if there were any days I couldn't make. I said No, as far as I knew, I could make any day I was offered. They then proceeded to tell me there currently were no appontments and they would send a letter, when they had fitted me in. This I found a little odd. Why did they ask me to call if they didn't have any space at the moment? Well, at least I know I am now in the system and when an appointment becomes available I will see a consultant.
Next I phoned my surgery. They told me that my Doctor would like me to discuss the results of my blood test. I was rather amazed at this. I only had the blood taken 36 hours ago! For a start I was expecting to wait at least a week - which could mean that the bloods went through as an urgent request - I didn't think myself as an urgent case, so why did my doctor?? (Perhaps it was just luck and the bloods arrived on a relatively quiet day in the lab ) The final thing this has left me wondering, is why did the Doctor want to discuss the results with me? I wasn't expecting them to show anything very much. Perhaps the things they were looking for would be a little raised, but not too bad. In previous experience, the only time I have been asked to make an appointment following a blood test is because something has been found. It could be that he wants to discuss the fact that the results are negative. After all we have both concluded that the symptoms I am experiencing are a crohn's flare up, and if the bloods are negative then perhaps we should be looking elsewhere....
I have arranged to see him at the beginning of next week. I am sure all will be revealed then.
Wednesday, 6 February 2013
Successful Doctor's trip
I had my appointment with my GP yesterday. I think I can safely say that it was successful, which is good!
I went in and told hin that the problems I had been experiencing with my gut hadn't really settled down, and that I am more or less ok, as long as I only eat white things! That's white fish, white bread, white rice, e.t.c.
I told him, I was ok, but that this was hardly a balanced diet.
As I have recently moved back to Cornwall having spent 8 years in a different county, he only had my notes from my original diagnosis, and not the years in between, so I had to fill him in on these details. It was a fairly comprehensive consultation really.
He has asked me to arrange blood tests for inflammatory markers, which would help to confirm that I am experiencing a flare up, and he dictated a letter to the consultant onto his dictophone, checking with me that he had my details and symptoms correct.
He also decided that it was best for me to have an appointment with the consultant once the blood test results had been received.
Now it may seem odd, but I'm a little worried that the inflammatory markers in the blood tests wont show up as high! I am sure that I am experiencing a flare up, however, I have been managing the disease through eating only low residue foods. This seems to be working very well, and all the time I stick to a low residue diet, then I am pain free, and my bowel movements are just once a day. I no longer have any distention to speak of either. Whilst this is all brilliant, I don't believe it can be good for my health long term. I can't believe that I am receiving enough vitamins and minerals on such a diet, and am concerned that I may end up with deficiences. This is why I would like to see a consultant; so that I can discuss whether diet is the best form or treatment, and maybe get referred to a dietician, so that I can properly work out trigger foods and hopefully end up with a relatively varied diet that will keep the crohn's under control until, with any luck, it burns itself out.
So, as I my blood test was booked for 48 hours time, I was faced with the decision as to whether I continued eating my "white diet" or I tried to invoke my flare up in order to prove that it is indeed a flare up through the blood tests by eating normally. My concern is that if my blood tests are normal, then either I will not even get a consultants appointment, or that I do, but the consultant looks at the tests and simply decided that the current treatment I am on is satisfactory and nothing further needs to be done.
I decided to take the opportunity to eat a more varied diet for a couple of days! It has been nice to finally have some variety, but I am feeling a little uncomfortable today. Just 24 hours and my bowels are already a little more loose, I have an uncomfortable feelings in my adomen of a cross between stitch, the need to pass wind or open my bowel, and a bit of a bloating feeling. Thankfully I am not in a load of pain. As soon as my blood tests have been taken, I think I will go back to a low residue diet until I have seen the consultant!
I went in and told hin that the problems I had been experiencing with my gut hadn't really settled down, and that I am more or less ok, as long as I only eat white things! That's white fish, white bread, white rice, e.t.c.
I told him, I was ok, but that this was hardly a balanced diet.
As I have recently moved back to Cornwall having spent 8 years in a different county, he only had my notes from my original diagnosis, and not the years in between, so I had to fill him in on these details. It was a fairly comprehensive consultation really.
He has asked me to arrange blood tests for inflammatory markers, which would help to confirm that I am experiencing a flare up, and he dictated a letter to the consultant onto his dictophone, checking with me that he had my details and symptoms correct.
He also decided that it was best for me to have an appointment with the consultant once the blood test results had been received.
Now it may seem odd, but I'm a little worried that the inflammatory markers in the blood tests wont show up as high! I am sure that I am experiencing a flare up, however, I have been managing the disease through eating only low residue foods. This seems to be working very well, and all the time I stick to a low residue diet, then I am pain free, and my bowel movements are just once a day. I no longer have any distention to speak of either. Whilst this is all brilliant, I don't believe it can be good for my health long term. I can't believe that I am receiving enough vitamins and minerals on such a diet, and am concerned that I may end up with deficiences. This is why I would like to see a consultant; so that I can discuss whether diet is the best form or treatment, and maybe get referred to a dietician, so that I can properly work out trigger foods and hopefully end up with a relatively varied diet that will keep the crohn's under control until, with any luck, it burns itself out.
So, as I my blood test was booked for 48 hours time, I was faced with the decision as to whether I continued eating my "white diet" or I tried to invoke my flare up in order to prove that it is indeed a flare up through the blood tests by eating normally. My concern is that if my blood tests are normal, then either I will not even get a consultants appointment, or that I do, but the consultant looks at the tests and simply decided that the current treatment I am on is satisfactory and nothing further needs to be done.
I decided to take the opportunity to eat a more varied diet for a couple of days! It has been nice to finally have some variety, but I am feeling a little uncomfortable today. Just 24 hours and my bowels are already a little more loose, I have an uncomfortable feelings in my adomen of a cross between stitch, the need to pass wind or open my bowel, and a bit of a bloating feeling. Thankfully I am not in a load of pain. As soon as my blood tests have been taken, I think I will go back to a low residue diet until I have seen the consultant!
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