Crohn's Quine Diary Roundup: June 2014
Hello lovely readers and fellow IBD warrior's. Another month has come to an end so that means it's time for a Crohn's Quine Diary roundup. If you would like to see my diary entries as soon as I post them then follow my Crohn's Quine diary.
Monday 2nd June
This past weekend has been pretty rough and it all started on Friday morning.
I woke up on Friday morning with sore legs and to be honest I just thought I had layin wrong. I woke up on Saturday morning and once again they were sore so I decided to just stay at home and rest instead of going into town because normally if I walk on them when they are like that they end up swelling up and I also develop a red pin prick rash. As the day progressed the grumpy guts aka bowel decided that it wanted to throw a tantrum, it also decided to continue the tantrum on Sunday so I spent the day in bed and didn't get anything productive done this weekend.
All I can say is thank goodness I have the IBD clinic on Friday hopefully they will make the decision this time to up the humria from fortnightly to weekly. They put it off the last time I mentioned at clinic in March because thought it was too soon to up the dose up but now it's 3 months later and nothing has changed so can they really refuse to change me to weekly injections this time.
Friday 6th June
So today as massive weight was lift from my shoulder's.
Today I made it public that I am suffering from agoraphobia. I have been battling with anxiety for years but it turned in to agoraphobia back in April after I was put through an awful lot of stress due to a screwed up oesophageal dilation. It feels really good to get it out in the open as it really was becoming to difficult to hide it from folk (people), I actually feel less stressed now as well.
So since I last wrote my bedroom has finished being painted also the wood work has been paint a cream colour, the new bedroom furniture is being delivered on Monday and someone is hopefully coming next week to measure the window so I can get a cream wooden venetian blind. It's going to be weird sleeping in my bedroom again after sleeping in the living room for the past 3 weeks.
Tuesday 10th June
So the stupid grumpy guts are still playing up and the IBD nurse has still not phoned me back. I was suppose to go to the IBD clinic on Friday but obviously due to having agoraphobia I couldn't go so I phoned the nurse on Friday to explain that my crohn's is still flaring and I asked if they could change my humria from fortnightly to weekly injections. When I spoke to on her at 8.40am on Friday morning she was just going to clinic and would ask the doctors about getting the humria changed, she said that she would not be able to phone me back on Friday and I said that was no problem but I thought she would have at least phoned me back by now. To be honest I don't know how much longer I can live like this the pain in progressively getting worse and so is the fevers.
My new bedroom furniture arrived yesterday and their was little bit of hiccup, instead of getting the smaller dressing table I had ordered I got the larger one but to be honest the larger one looks a lot better then the small one so I have have decided to keep it.
All the furniture has been put together and I love it.
Hopefully I will be able to give the furniture a wipe down tomorrow and then be able to start to put things in the cupboards and drawers.
Tuesday 24th June
If dealing with the Crohn's and agoraphobia wasn't enough I have noticed that the depression has slowly been creeping back in these last few days. I have been taking my medication for depression but because my bowel and ostomy has gone absolutely crazy due to being on liquid feed only I am probably not absorbing them properly.
I really hate when my oesophageal stricture's become this bad because I can't any get solid food passed them and I really need solid food to stop this brown disgusting smelling water from pouring out of my ileostomy. I have tired taking lomperide liquid and immodium instants, they do work but at soon as I start putting the liquid feed through the PEG tube it just goes back to being the disgusting water.
There is nothing much for me to do except try to and keep busy, it's hard when I am extremely tired all the time but if I don't keep busy and distracted for all the negative things the depression will become worse.
Thursday 26th June
Today I spoke to my GP on the phone and asked for his help with the agoraphobia. I really do hate asking for help because it makes me feel weak but I really needed to because I have only been out of the house once since I am came out of hospital on the 11th April which is nearly 3 months ago.
My GP has set up a plan of action to try and help get this anxiety sorted out, he is going to get an occupational therapist who works with people who have anxiety problems to come to my house which will be good because it's going to be nice to talk somebody who doesn't think that you just need to go out of the house and it will make it all better. The GP is also going to arrange for a community phlebotomist to come to my house and take bloods because the hospital are going to stop my humria if I don’t get bloods done and that is the last thing I need.
After speaking to the doctor today I am feeling much more positive about things. I know that it is going to be extremely hard and I am going to have to face a lot of fears but I need to do this.
That's it for today's blog post, always remember to....
Monday 2nd June
This past weekend has been pretty rough and it all started on Friday morning.
I woke up on Friday morning with sore legs and to be honest I just thought I had layin wrong. I woke up on Saturday morning and once again they were sore so I decided to just stay at home and rest instead of going into town because normally if I walk on them when they are like that they end up swelling up and I also develop a red pin prick rash. As the day progressed the grumpy guts aka bowel decided that it wanted to throw a tantrum, it also decided to continue the tantrum on Sunday so I spent the day in bed and didn't get anything productive done this weekend.
All I can say is thank goodness I have the IBD clinic on Friday hopefully they will make the decision this time to up the humria from fortnightly to weekly. They put it off the last time I mentioned at clinic in March because thought it was too soon to up the dose up but now it's 3 months later and nothing has changed so can they really refuse to change me to weekly injections this time.
Friday 6th June
So today as massive weight was lift from my shoulder's.
Today I made it public that I am suffering from agoraphobia. I have been battling with anxiety for years but it turned in to agoraphobia back in April after I was put through an awful lot of stress due to a screwed up oesophageal dilation. It feels really good to get it out in the open as it really was becoming to difficult to hide it from folk (people), I actually feel less stressed now as well.
So since I last wrote my bedroom has finished being painted also the wood work has been paint a cream colour, the new bedroom furniture is being delivered on Monday and someone is hopefully coming next week to measure the window so I can get a cream wooden venetian blind. It's going to be weird sleeping in my bedroom again after sleeping in the living room for the past 3 weeks.
Tuesday 10th June
So the stupid grumpy guts are still playing up and the IBD nurse has still not phoned me back. I was suppose to go to the IBD clinic on Friday but obviously due to having agoraphobia I couldn't go so I phoned the nurse on Friday to explain that my crohn's is still flaring and I asked if they could change my humria from fortnightly to weekly injections. When I spoke to on her at 8.40am on Friday morning she was just going to clinic and would ask the doctors about getting the humria changed, she said that she would not be able to phone me back on Friday and I said that was no problem but I thought she would have at least phoned me back by now. To be honest I don't know how much longer I can live like this the pain in progressively getting worse and so is the fevers.
My new bedroom furniture arrived yesterday and their was little bit of hiccup, instead of getting the smaller dressing table I had ordered I got the larger one but to be honest the larger one looks a lot better then the small one so I have have decided to keep it.
All the furniture has been put together and I love it.
Hopefully I will be able to give the furniture a wipe down tomorrow and then be able to start to put things in the cupboards and drawers.
Tuesday 24th June
If dealing with the Crohn's and agoraphobia wasn't enough I have noticed that the depression has slowly been creeping back in these last few days. I have been taking my medication for depression but because my bowel and ostomy has gone absolutely crazy due to being on liquid feed only I am probably not absorbing them properly.
I really hate when my oesophageal stricture's become this bad because I can't any get solid food passed them and I really need solid food to stop this brown disgusting smelling water from pouring out of my ileostomy. I have tired taking lomperide liquid and immodium instants, they do work but at soon as I start putting the liquid feed through the PEG tube it just goes back to being the disgusting water.
There is nothing much for me to do except try to and keep busy, it's hard when I am extremely tired all the time but if I don't keep busy and distracted for all the negative things the depression will become worse.
Thursday 26th June
Today I spoke to my GP on the phone and asked for his help with the agoraphobia. I really do hate asking for help because it makes me feel weak but I really needed to because I have only been out of the house once since I am came out of hospital on the 11th April which is nearly 3 months ago.
My GP has set up a plan of action to try and help get this anxiety sorted out, he is going to get an occupational therapist who works with people who have anxiety problems to come to my house which will be good because it's going to be nice to talk somebody who doesn't think that you just need to go out of the house and it will make it all better. The GP is also going to arrange for a community phlebotomist to come to my house and take bloods because the hospital are going to stop my humria if I don’t get bloods done and that is the last thing I need.
After speaking to the doctor today I am feeling much more positive about things. I know that it is going to be extremely hard and I am going to have to face a lot of fears but I need to do this.
That's it for today's blog post, always remember to....
Keep Strong, Keep Fighting
xxxx
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