Monday, 26 March 2012

This weeks appointment update

I'm sorry for not posting sooner with an update but you know what it's like!

I've had a really rough week and have been trying to sleep through it all for a while. It's a long story but I'll keep it short !

It was my daughters birthday on Monday...which meant that there was an evil chocolate cake in the house...yep...on Tuesday, I caved... and now I'm in a right old pickle!

My dietitian rang me on Wednesday to see how I was getting on and was more than a little bit worried when I told her the situation. I had already switched the feed off because my abdominal pain was through the roof so she told me to leave it switched off overnight and to start again when I felt well enough.

I had my appointment with the surgeon about my gallbladder on Thursday which was lousy timing but I really needed to go so I went armed with sick bags and stemitil!

My appointment went really well and he said that he does think that the gallbladder is playing a role in some of my pain issues at the moment. He said he would be happy to remove the gallbladder and possibly the pacer too. He wants to speak to my GI first so I'm now waiting to hear back about what they are doing and when. He also said that he would be able to do everything keyhole so I could avoid another open surgery. So that's a little step forward, and hopefully it will answer a lot of my pain issues!

I slept for most of the way home and just flaked out on the bed in my clothes when I got home. I didn't wake up until lunchtime the following day! This is good when you don't get much sleep... but it's not good when you are having to manually flush water down your tube during the waking hours of the day. So now I'm dehydrated and frantically trying to top myself back up.

The weekend was really tough and I realised today that I'm not going to manage if I continue to go downhill much longer. It's my sons birthday on Friday and I want to be here for that so I'm on a mission to regain control!

It just goes to show how one tiny insignificant piece of chocolate cake can completely kick your ass!





Wednesday, 21 March 2012

Hey guys,

I hope you like the videos... I messed up a few times but hey, at least I've mastered video uploads! Im going to try and do some more soon but wanted to know what kind of information you want me to talk about. Let me know if there is anything you feel is missing from my blog which you might want me to include. I am trying to make it a little more user friendly but blogging has its limits and until I get my website up and running there isn't a great deal I can do to change the layout so please bear with me!

I have my surgical review coming up on Thursday so I will update my diary properly when I know more.

It feels like I have been really busy this week but when I sit here and think about what I have done I realise that I have actually done very little. I have been going over things in my mind again which is driving me to distraction. Something happened recently which stirred up lots of old feelings from when I first started on my health journey and I have struggled to try and make sense of my feelings. I sat down to record a video version of my diary the other night because I thought it would be easier than tying to write for a change. Needless to say, I don't think i'll be posting it, I kind of broke down, but when I watched it back I realised just how many feelings I have kept to myself over the course of my journey. I have learnt some valuable lessons over the last 2 years, and when I look back over the events leading to where I am today... I realised that my body may be weak but my spirit is strong and as long as I hold my head up high I will not let this beat me!


Tuesday, 13 March 2012

My video of life with GP



Hey guys here is my story so far, I am going to do a series of videos over the next few weeks to support the information that is already on here. I am trying to build a website but as many of you already know...Im a bit technophobic but at least Ive finally figured out youtube lol.

If anyone has any questions or topics they would like me to talk about please feel free to let me know...just leave a comment or message me on Facebook or Twitter @helpmeminx

Friday, 9 March 2012

Today's Rant!

I went to see my dietitian yesterday. It was as frustrating as ever grrr. I find her so pushy sometimes! I understand that I'm not getting enough calories right now...we all know that, but that is because I can't TOLERATE any more. I have pushed and pushed this least 2 weeks to increase my feed rate, with varying degrees of success and failure. I really am doing everything I can to improve the situation for myself but my dietitian doesn't seem to see that. She just keeps pushing and pushing and pushing. I explained to her that I was spending much of my time flushing my NJ tube with tiny amounts of water because I can't tolerate bigger flushes. Her suggestion was to give bigger flushes so I don't have to do it so often...yep thanks for that little gem, I can't be trying hard enough eh! That really made me quite cross because if that was an option I would be doing it! I asked about the hydra bag but that was dismissed instantly and then I asked if I could have the smaller bags of feed because I'm wasting so much and I'm carrying around all that extra weight just for it to go in the bin after 24hrs. She dismissed that too. She is very unwilling to listen to anything I say and just keeps telling me how she has ten years experience as a dietitian. It feels like if it's not her idea then it's a bad one! She asks question after question after question and it feels like some kind of interrogation at times. I understand the importance of being thorough but she takes it to extremes. She will ask a blanket of questions every week to which the answer is never going to change, like how are you flushing the tube and what with blah blah blah I use cool boiled water just like you told me to do when we first met, why would I do anything different? Nah this week I've been flushing it with vodka you muppet! Honestly I'm not kidding, I even have to tell her what size syringe I'm using when she knows full well what size she ordered for me to use...that's all I have so how could it be any different from one week to the next? Its just plain weird sometimes and I could do without it when Im in pain and I've had to drag myself out of the house into the cold for the privilege. I don't particularly want to spend the first 15 minutes of my appointment repeating stuff that she already knows! Then she put the cherry on the cake by saying that if I could keep pushing through the pain and increasing the feed I'll feel better for it. NO REALLY, what? I'll feel better when I get more food in...your kidding, why didn't I think of that? Obviously I'm not suffering enough right now and I need to stop being a wimp and just grin and bear it so I can trade being in bed because I've got no energy for being in bed because Im in total agony! It's not just distressing for me it scares my kids too and they get really upset when they see me suffering. It is way too much to expect someone to live like that and I was pretty disgusted by her attitude towards my symptoms. I have a lot of pain already with the regime that I'm following but obviously that's not significant because I don't walk into her office with a grimace in my face. I have had this with every dietitian I've seen other than my team at Durham. They just have no idea what my problem is, they just don't get it and I'm sick of it!

Tuesday, 6 March 2012

It's A Waiting Game

Hey guys, Im posting because I got my confirmation for my appointment in Manchester today. It is for the 16th of April which sounds like a million miles away to me at the moment. I can't even begin to explain how drained I feel and I just know its only going to get worse which is the hardest part to take. I'm spending much of my time giving flushes down my NJ tube because I'm not tolerating enough feed to keep my fluids up, meaning I have to do 10ml water flushes throughout the day. I'm going to ask my dietitian if I can get some hydra bags (water) so I can switch to water for a few hours a day...I think anything is worth a try at the moment because quite honestly I'm not getting enough of anything right now anyway so I might as well try it and see if I can get some more fluid on board. I did also think that it might be worth trying the basic feed again to see if I can tolerate higher volumes of that, it's less calories but if I can cope with a higher volume then that would also increase my fluid intake. I think sometimes we have to just take charge of ourselves and just do what you think is best for you! It's not good relying on people who don't live it to tell you what you need to be doing. Of course I won't make any changes without speaking to my dietitian first but at the end of the day no one else has any ideas right now!

Friday, 2 March 2012

My latest consultation

I got my letter from my GI yesterday. It's funny how, you can hear someone say something and think you are coping with it, but when it is written in words it's so much harder to take? I don't know why that is but for me having it written down makes it real...if that makes sense? I'm not posting this for mild entertainment, please remember that this is my life and not a soap opera! It takes courage to bear your soul to the world and share these intimate thoughts and feelings but I do so to help the thousands of other Gastroparesis patients who are battling this horrible condition. By sharing our experiences we can learn together and hopefully learn to live with the challenges that face us. So here it is: I reviewed xxx today. I am sad to say that the Nasojejunal tube feeding has not worked. She is only managing 17mls an hour and is feeling quite uncomfortable with this and sometimes in severe pain. She continues to loose weight and this is really quite worrying. She is also looking quite low and I thought she looked more down than I have ever seen her before. I am not surprised as we have really put her through a number of ordeals and nothing seems to be working. I am going to refer her for a further opinion to xxx in Manchester with regard to possible TPN as I don't see any other options at the moment. Dr xxx has considerable expertise in this field and may have one or two other ideas. I have asked him to see her as soon as possible in view of the continuing weight loss. We reviewed the fact that she has an 8mm gallstone. I did not feel that this was the cause of her symptoms and would only suggest removal of the gallbladder if she was having surgery for other reasons, but I have out this to Dr xxx in my referral letter to him. I have given her a further appointment in 6 months time. So that's the plan guys, I'm just waiting for my appointment to come through and we will take it from there. he also increased the dose of one of my meds which has helped me to sleep a bit better than I was and so now I can at least have a few hours of total rest from it all. All in all I'm doing ok, I'm just pushing as much as I can with the feed every day and resting a lot to avoid using my precious calories. I will be so glad when I find something that enables me to start living again xxx