Archive | September, 2012

Fall down seven times, stand up eight.

22 Sep

…At least, that’s what I keep telling myself. I’m having quite a blip at the moment, but before I go into that, I’ll tell you how I’m getting on at University.

University so far is great. I am really enjoying myself, and although I’m ill at the moment and have had a few problems, I have enjoyed a few nights out and have been getting to know some lovely people. I have told a few people about my ostomy, and they have been very interested and supportive.
I’ve got my timetable, and besides the 8pm finish on a Tuesday, everything looks pretty gravy baby, as some would say! Looking forward to getting started & into the work now, although, I will probably regret saying that when I’m stressed up to my eyeballs in work in a few months time! My accommodation is lovely, I really like it and I am so glad I opted for en-suite as it makes my life so much easier.

So, about this blip…Well, if you’ve been following my blog, you will know that over the past few months I have been having problems with partial blockages and pain when food is coming through Stacey. This pain came to an absolute high the other night. It all kicked off when I got chips on the way home from a night out, and didn’t chew them properly, which set off the pain, then 4/5 days later, I’m still in agony, even after the chips have passed through. It gets worse every time I eat, but I have the appetite of a very large pig at the moment, so this really isn’t ideal. I rang my stoma nurse up on Wednesday, having tried to have put up with it and sit it out, but it was all getting too much to handle, I’ve had Crohn’s since aged 7, so I definitely know when something is wrong with my body and have learnt to trust my instincts now. I’ve been getting a huge amount of pressure behind Stacey which has been very painful after I’ve eaten, it’s been at it’s worst on a night when I’ve obviously got all my meals going through me from the day, but I never really put food and the pain together until I saw my stoma nurse and the Prof who did my operation yesterday. Stacey has been finding it hard to push things through, and I’ve been getting build ups of food behind my stoma, especially behind her at the top and right hand side (as I’m looking at her) which I have been having to massage and squeeze to get food through, unfortunately with great pain involved. I’ve also been feeling sick when I’ve had stomach pain, very close to actually being sick on a few occasions and have been feeling very faint and generally out of sorts. Stacey has been nipping and wriggling no end on my stomach and swelling then shrinking daily as my food has been working it’s way through and bending over to pick something up or getting dressed has been so painful. So yes, I gave in, I’d had enough, and off up to the hospital I went with Mum yesterday morning.

On arrival, we went to the Outpatients’ Reception where I had to wait for my stoma nurse, and I sat huddled over in the chair with my Mum rubbing my back, in pain and wanting to fall asleep from hardly any sleep the night before from the pain. Then, it was in to see my stoma nurse. She checked Stacey and managed to get her finger down her and said she looked and felt fine. However, we were both still very curious as to why I have been getting so much pain, so she went to get a surgical registrar to have a look at me, especially as I had said that the pain had got so bad the night before that I had nearly got my Mum to take me into A & E. To my surprise, the Prof who did my operation came through the door to see me, as he said he wanted to check me himself and sort me out, which I thought was lovely. I trust him 100% with my problems and know he will do whatever he can to make me well, he is fantastic and I know he has my best interests at heart, as any good medical professional should. He asked me about my symptoms etc and within very little time diagnosed me. I have a partial obstruction in my bowel, just behind my stoma, due to scar tissue, he says it is extremely likely.

Even when I have problems, I am still so thankful for Stacey and the great medical team that I have 🙂

All the things he was describing and my symptoms go hand in hand, and I was pleasantly stunned at how quick he came up with some answers for me, I actually said to him, “That’s the man right there!” :D, with a big smile on my face at how I’d gone from worrying what was wrong to getting some answers so quickly. The obstruction in my bowel from adhesions (scar tissue) has most likely made a kink in my bowel not far from the mucosal junction (where Stacey comes out of my skin on my stomach) that is made worse by food. I am now on a liquid diet for 2 days to see if that eases it to help secure the diagnosis, and so far, I’ve had very little pain compared to what I was having the day before yesterday on a normal diet. I have to go back for a few tests soon, one being an x-ray of my stoma with dye injected into Stacey to try and find out exactly where the obstruction is. Otherwise, I am not entirely sure on the other tests, although there was mention of me maybe benefiting from a camera down my stoma to have a better look at things.

We will find out soon when I get my letters through, then I will be going for the results to see Prof again in a few weeks time. After these few days, it’s a very low residue diet for me and taking things very carefully. Then, once I get my results, we might be able to sort things with diet, pain relief or I might have to have another operation, which could lead to more scar tissue, it’s all a vicious circle really and neither outcome is exactly brilliant. On the plus side, at least now I have some answers, and also, I no longer have to dilate my stoma as the Prof said Stacey isn’t the problem, it’s my obstruction making things painful and dilating will not help. I am very low on energy, coming down with a cold, and really not in the mood for all of this struggling and pain. I have just started University…and I have been through enough pain in my lifetime, but obviously, these things just have to test me and see how strong I really am.

These things come to try us.

& even in pain, I still try to see things positively 🙂

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Today is the day…

15 Sep

…that I move to University, eek!

To say I’m pooing my bag would be an understatement, I am so nervous, but then part of me is also excited. It’s all thanks to Stacey I can do this.

It’s 01:28am and I am wide awake with nerves, so this is just a quick one. I feel like I have had a Red Bull, my body is that on edge and alert. I don’t really know where to put myself at the moment in all honesty.

I do know one thing though, and that is that I am a very happy girl at the moment. All I will say clues wise, until next time (maybe! (-; ), is that happiness comes to you when you least expect it, and that thanks to Stacey again and another stoma, I have met someone incredibly special.

Keep your eyes peeled guys & girls & wish me luck!

I will be sure to write when I can once I have internet access and have got the first bit settled into at University.

Lots of love,

Amy & Stacey.

Ostomism not Pessimism! ™ 

Video

Lullaby – Nickelback

10 Sep

The lyrics in this song are so meaningful.
I am a big believer in the power of music, especially when it comes to helping people through tough times. Music has helped me through many dark times. I love singing, it helps me vent emotion and feel better.
This song means a lot to me. It always reminds me there is plenty to live for, even if sometimes, you feel like you just want to give up. It also reminds me that somebody else out there will have been where I am, so has an idea of how I feel, and that is comforting in itself. Nobody should ever feel alone, & I hope this blog helps people to realise that. I am always here if anyone needs to chat! Just drop me an e-mail at: amyrobson09@googlemail.com.

Love Nickelback! Can’t wait to see them for the third time live, in October 🙂 ♥

Aside

University draws closer

9 Sep

Less than a week until I move to University. This time next week, I will have officially moved in. It is really starting to hit home now, & I have many mixed emotions. I will have been to the Fresher’s BBQ and will have met my flatmates and lots of other new people. Nerve-racking times!

After having to adapt to getting Stacey last year and still adapting to her, it is going to be another big change to come to terms with. It scares me that all of a sudden my life is going to change in the click of a button majorly, just like it did with my operation. Then there’s the knowledge that I won’t just be adjusting to a whole new life at University, but I will be adjusting to living with Stacey Stoma there too. The fact that she might shout and grumble when I least want her to does scare me, I won’t lie. I worry about bag leaks, pain, whether I’ll eat properly, whether anyone will notice, but, it is the aspect of sudden noise that worries me more than anything, as she can be very talkative! I am just hoping she doesn’t pick her moment that often as a moment that is quiet, like in the middle of a lecture theatre or classroom, and won’t shut up. My whole body language goes tight and closed up when Stacey makes a noise, not so much as it used to or if she makes a noise in a situation where I’m comfortable, like at home. If I’m in a situation or environment where I’m not as comfortable or on edge, I do tense up when I feel Stacey is going to make a noise, or sometimes I don’t know, it just happens then I flinch and immediately move my hand over my bag. It has become a natural reaction and a habit, but I am trying to phase myself out of it, because by doing that, I am just drawing even more attention to myself. Sometimes, when Stacey makes a noise, I can mask most of it by putting something over her. My stoma support waistbands help with the noise to an extent, so that’s something I can use. There are other ways too. For example, if I have my handbag on my knee I can mask it with that so it muffles the sound, or I cough, or sit with my arms crossed slightly bent forward so I don’t make it too obvious. Still, being slap bang in the middle of a lecture theatre creeps me out. This is coming from the girl who had a life saving operation last year and came through it, but there you go! It sometimes is the simplest of things that scare you the most! C’est la vie!

Lecture theatres aren’t going to be really quiet, I guess, and some people who I’ve spoken to like my Mum reassured me that there will be other noises like people coughing and probably even people burping and farting, who knows?! I hope not, but you never know with some people! There will also be other people with other health conditions and other people with ostomies and other things they have to adapt to with University life just like me. Then it bothers me that I cannot really drink alcohol, but then I guess, the people who give me stick over not drinking alcohol aren’t worth my time and obviously have extremely narrow minds. I don’t need alcohol to have fun, but I am sure I will find a way when I am ready to cope with a few drinks without getting ill. I just have to make sure I’m very hydrated, as I have problems with it as well as my appetite at the moment. When I do get an appetite, it comes on suddenly, then I eat and feel sick for a good while after and get the runs. That could be to do with my nerves I guess, but I do have a doctor’s appointment booked for Monday…finally!

This is going to be far from a walk in the park, but with everything I’ve been through, I know I can do it. It is going to be a huge strain on my emotions, as well as physically in some ways with other things I’ve got going on health wise. It will take some settling in, and I doubt I will feel settled until a few months have passed. I will get there though.

I am glad I can go to University, even if it scares the life out of me! I am now able, and that is what is most important. I am so thankful for that, this time last year I had to defer entry, and now I am going, it seems crazy!

“Life begins at the end of your comfort zone.” 

Ostomism, not Pessimism™

Eating

2 Sep

So I’m having issues eating at the moment & have been for a good few weeks. It’s starting to get to the point where it’s really irritating me now, and I just feel weak and rubbish as a consequence. Because of not eating properly, Stacey doesn’t know where she’s at, so I don’t know what’s going on with her. I also keep getting a localised, what I can only describe as an ache that feels like a pulled muscle, under her that comes and goes. I am still managing to dilate her, but she does seem a little tight compared to a few weeks ago. I’m on a bit of a downer at the moment. When I try to eat things, I get a bit through them then just lose the will to eat and can’t face it anymore. I’ve tried Dioralyte sachets to help with my hydration, but I just brought it back up again. I’m getting so fed up now. I constantly feel dehydrated and rubbish and just want to cry most nights because everything I drink goes straight through me and things I manage to eat just make me feel sick or make me feel uneasy as they squeeze through Stacey. I’ve also lost weight, from the near nine stone I was a few months ago to seven and a half now. Bad times.

I’m all for ostomism as I call it and keeping positive, but sometimes I just want to scream and throw the towel in with it all, especially when I feel ill and rubbish and have other health issues too. ARGHHHHH! There, I screamed haha! 😀

Going to get a Doctor’s appointment tomorrow, fingers crossed. I will keep you all updated 🙂

Also, before I go, a big shout out to Hastie off my support group on Facebook who has just undergone surgery a few days back to have a colostomy formed. He is a trooper and is doing amazing. We are all so proud of you! I know he will read this at some point, I’m not just writing as if I’m talking to myself! 😀 Keep it up Hastie, you are a true inspiration and there are many people here for you 🙂

If you fancy checking out his blog: http://lifeisballbagthenyoudie.wordpress.com/ 🙂 Go read! 🙂