This week didn't really get off to the best of starts because the oesophageal stricture's of course wanted to play havoc once again. On Sunday when I last wrote I was able to drink small sips but the stricture's closed up again completely and then on Thursday it mysteriously opened up. When I woke up on Thursday morning I had to bring up the saliva that didn't go down during the night and I couldn't drink, but by night time I was able to drink and just not the small sips either large sips was going down. These stricture's make absolutely no sense at all, once stricture's are narrowed the only way to get the open again is by dilation, they don't open by themselves.
So I finally cooked this week. (Cooking and baking are some of my favourite hobbies but it has been a long time since last I did any cooking because it makes me upset as I can't eat the finished thing) It felt really good doing something that I love, despite not being able to eat it. I was orginally going to cook Sichuan-style pork & green bean stir-fry for the family but I could not find any Sichuan pepper where I live. Thankfully I did mange to find another recipe, Black Bean Pork with Noodles that used most of ingredients that I bought for the stir-fry.
I honestly cannot wait to cook again so much so that I have already decided on what I want to cook next, Lemon Parmesan Pasta with Chicken which is a recipe that I found on pinterest. I really want to start baking again as well but I really need to buy myself a food mixer because I certainly do not have the strength to use a hand held mixer anymore.
Previous post - Sunday 7th September
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So finally some good things have happened this week. Good thing number one is I am finally able to drink small sips which means my oesophagus had become irradiated and swollen shut so fingers crossed in a few more days it will be back to normal, well normal for me.
Good thing number 2 is I have finally got an appointment with an occupational therapist on Tuesday the 30th of September. An occupational therapist is suppose to help me with my anxiety problems and I have had a few people say that seeing an occupational therapist really helped them with their anxiety issues.
This weekend I was finally in the mood to started cooking again. Cooking and baking are some of my favourite hobbies but it has been a long time since last I did any cooking because it makes me upset asI can't eat the finished thing but now my appetite has finally disappeared I can be around food now again. So as I said I had planned to cook but I couldn't find all the ingredients that the recipe needed. :( There is a couple of more places that I can try but if I can't find them there I will just have to make something else.
Previous post - Thursday 4th September
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Sorry that there has not been any blog posts for a little while but I have been dealing with a with problems.
So these last couple weeks my oesophagus has been playing silly buggers with me. Last week it seemed to open up a bit so I decided to give some very watered down pureed food (it was more like soup really) a try which went down no problem. After doing this for a couple days my oesophagus and throat started to be come raw and sore which I couldn't really understand because the stuff that I was making was of a soup like consistency so how could it be irritating the oesophagus.
By Sunday it was really bad and then on Monday morning when I tried to drink nothing would go down at all, even saliva wouldn't go down. I really do hate when that happens because a) I can't speak to anybody because speaking causes me to make more saliva so I start choking, b) having to bring up horrible thick saliva is bloody disgusting and c) due to becoming badly dehydrated I feel like I am living in a fuzzy, spaced out world.
I am really hoping that this is just a hiccup and that it has just become swollen due to being irritated. Over the past 3 years I have learnt that sometimes it just swells shut because something has irritated and after a week or so the swelling goes down enough for me to be able to drink again.
Previous post - Saturday 2nd August
I have really been struggling since last weekend not only physically but mentally too.
Last weekend I ended up having an ostomy output that I have never had before, it had this weird ground coffee look which of course sent me into a panic because if you bring up ground coffee vomit it normally means there is blood in the vomit. Thankfully I had some trusted Crohn's friends that I could ask about his problem and they reassured me that the output was not necessarily blood.
As I was talking to them we got onto the subject of my oesophageal stricture's and how I was being treated and lets just say I have been thinking about that conversation at great length since last weekend. They are right with what they were saying I should get a second opinion about my stricture's, my consultant has been saying these past few years that nothing can be done with them but that is just his opinion. I have asked a couple of times now to be referred to a upper GI surgeon at my local hospital but he has never done the referral, I don't honestly know why he does not do the referral because a) it would stop me annoying him about it and b) the law says that everybody has a right to a 2nd opinion. Last year asked my GP if he could do a referral to a consultant in Oxford because there is a really good doctor who works at that hospital but according to my GP he cannot do an out of area referral. This whole situation is a complete nightmare no wonder I suffer from depression and guess what the mental health experts said, they cannot help me with my depression because it is related to my physical health.
It is time for change, I cannot keep living this way. I am 26 years old I should be out enjoying myself not stuck in this house 24/7, I need to get my fighting spirit back, I am not my illness.
Previous post - Thursday 24th July
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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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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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
Next post - Wednesday 9th July
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