Thursday 24th July 2014

Since I last wrote an entry over 2 weeks ago the horrible stomach pain that I had settled down all by it's self and actually when I think about it these past couple of weeks my stomach hasn't really been that bad. Yes I still get my normal stomach issues, spells where I feel really sick, I do still get fatigue and dehydrated as well but nothing has got any worse which is the most important thing.  

I have also made some progress with the agoraphobia this past week. I have finally managed to get outside, now it was only to put stuff in the bins and to go to the garage and get some juice from the fridge. It may just be small steps but it is better then nothing especially when I have had to do it all by myself as I never did get the help that I asked for. 

The 3rd and final good thing that has happened over the past few weeks is the new PEG feed regime, it may not fix all the gut issues that I have when I use the feed and it takes 16 and a 1/2 hours for a 1 litre bag to go through but it is making a difference. 


Previous post - Wednesday 9th July

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Wednesday 9th July 2014

So since last Friday I have been feeling really rubbish again and on Saturday and Sunday I was in a lot of pain especially when I got up to walk. Since the weekend I have developed a temperature and I have been feeling sick, on Monday I honestly thought I was going to land in hospital The main problem that I have is I don't what is causing the pain is it a Crohn's flare, is it the bowel adhesions or is it the fistula. The last time that I spoke to the hospital about this was at my clinic appointment in March and they said it was probably the fistula that was causing it so they gave me some antibiotics to take for a week. 

I did think about going to my GP to get stronger pain medication but they are limited to what pain meds they can prescribe and I am already taking paracetamol and dihydrocodeine so I don't think they will be able to give anything that is much stronger but I suppose I won't know if I don't ask. 

I got my new converse shoes at the weekend so it did make me feel a bit better because this girl loves a new pair of shoes.

And yesterday I got some or should I say a lot of their stoma care accessory sample's from Opus Healthcare. I only ordered four samples so when I got a 1kg box delivered I couldn't understand why it was such a big box but it turned out that they had given every type of sample that I they do. 

I can't wait to try them out and I really hope that they will help with the stoma issues that I have been having. 



Previous post - Wednesday 2nd July

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Wednesday 2nd July 2014

So this week hasn't been a good week so far the Crohn's has decided to flare up so of course that means I have a fever, abdo pain and feeling sick and if that wasn't enough I have managed to hurt my shoulder, goodness knows I managed to do it, it's like I can do much physical exercise at the moment.

So after finally waiting for over a year I finally got to talk to a CPN (community psychiatric nurse). My GP referred me to one because he thought that getting some cognitive behavioral therapy might help with the depression and anxiety. I chatted on the phone to her for a little while and explained all the problems that I was having, she said that she is not sure if she will be able to help me and will speak to a psychologist to get their opinion. This is not the first that this is happened they say all the mental health issues that I have are related to my physical health and until it improves my problems with depression and anxiety is unlikely to go away. I haven’t spoken to the occupational therapist that my GP referred me to last week yet but I really hope that the same doesn’t happen when I speak to the OT, I really do need some help because I feel completely and utterly lost at the moment.   

Seeing as I have been going through a rough patch I decided that I was going to treat myself and ordered a new pair of Converse today, I have been meaning to get a new pair for ages because my other ones ended up with holes in them and I had to throw them out. This time round I purchased the purple instead of the black ones plus they were in the Schuh sale so I saved £20. 

Previous post - Thursday 26th June
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Thursday 26th June 2014

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. 


Previous post - Tuesday 24th June
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Tuesday 24th June 2014

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. 


Previous post - Tuesday 10th June 

Next post - Thursday 26th June 

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Tuesday 10th June 2014

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. 


Previous post - Friday 6th June

Next post -  Tuesday 24th June

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Friday 6th June 2014

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.


Previous post - Monday 2nd June

Next post - Tuesday 10th June

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