Tag Archives: Crohn’s Disease

NEW BLOG!

3 May

Hi readers,

Just a post to let you all know I recently started a new blog to keep track of my post-surgery experiences more regularly and also start to introduce videos into my posts.

I will still keep this blog open for those who wish to read posts earlier on in my recovery after surgery etc, but all new posts can be found and subscribed to at:

http://www.ostomismnotpessimism.wordpress.com

Many thanks for all the continued support from my followers on this blog & readers & please don’t hesitate to read/subscribe to/follow my new blog! ๐Ÿ™‚

Best wishes,

Amy & Stacey Stoma x x

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Another year with Stacey complete!

30 Dec

Hi readers,

I hope you all had a good Christmas!

I thought with it being the penultimate day of the year I’d do my final post of 2013 and just summarise how the year has been for me living with a stoma.

Compared to the many years of being ill before, it has been a great year for me & I have accomplished even little things that I could have never dreamt of before having my surgery, such as eating a full meal, having a good night’s sleep free of pain and planning a trip out that doesn’t revolve around toilet stops! I’ve had Stacey for 2 years and nearly 5 months now – time flies!

I have only really had a few minor issues with my stoma in 2013; these being the muscle cramps behind it which I got prescribed tablets for, really thick output, my iron levels and more recently, a few irritating bag leaks. Luckily, I haven’t suffered that much the last month or so with the muscle cramps but when I do I find that the Alverine I was prescribed really helps. I also had a few weeks where my output was uncomfortably thick – I felt like it was really struggling to come out at times and it made me feel really clogged up inside. This seemed to pass within a week or so by minimising foods that bulk you up such as carbohydrate-rich foods like pasta and potatoes and making sure that I had plenty of clear fluids. I also found fizzy drinks helped too with the high sugar content and gas to push things through. My iron levels I have always struggled with, before and after surgery. When my Crohn’s Disease was active I suffered with Anaemia of Chronic Disease; this is anaemia usually typically found in those with chronic health problems/disease and/or those with inflammation present in their bodies, usually in higher quantities, such as in moderate-severe Crohn’s Disease in the intestines. There are many ideas and or arguments into understanding what causes anaemia of chronic disease I understand but it seems to be that there are more than likely a few or several contributing factors to it, such as diversions of iron in the body or problems with iron stores due to disease. I had my iron infusion a week and a half ago now and so far haven’t noticed a difference, but I was told it can take up to a month in some people for them to start noticing the benefits or even longer, so fingers crossed that I do start to notice. In the New Year, I will be organising a blood test to check my iron stores within my body again and see how much the transfusion has helped internally. On another issue, the past few weeks I have had five bag leaks, which is a lot for me considering up until then I had only had a handful over the first few years. I can’t really think of what has caused them; my guess being that my stoma has been a bit up and down in size and the fact that I’ve not checked enough that the adhesive ring of the bag that fits around the stoma has not adhered to the skin properly due to me either being in a rush or not getting it properly over my stoma all the way round, causing output to leak underneath. The Coloplast bags themselves that I use are great and are very secure – the adhesive is the best I have found and works well for a lot of people I know with ostomies compared to other bags. Despite these issues, I would not swap having my stoma for the world because it really did save my life, no exaggeration about it. The issues I have encountered are extremely minor compared to what I have had to deal with before.

2013 has also introduced me to more inspirational people who amaze me with what they cope with and still manage to smile. I have spoken to many going through surgery and kept in contact with those I have known before this year and every one continues to amaze me and really inspire me with the things they achieve, no matter how small the things may seem to them. The positive attitudes of these people is really inspiring and shows you that no matter what tries to stop you, you deserve to reach your dreams just as much as anybody else, in fact, if anything, more than your average person.

For 2014, I saw a really good idea on the internet the other day that would help a lot of us, especially for when you have your down days. At the start of January, buy a jar or find a box (doesn’t have to be huge) and when something good or positive happens, no matter no small, write it down on a small piece of paper, fold it up and put it in the jar. When you feel down or downhearted, open the jar and read what you have accomplished so far; the more you get, the more you will smile and the more it will remind you just what you can achieve and why you should smile. What a lovely idea! ๐Ÿ™‚

December 2013 :)

December 2013 ๐Ÿ™‚

Before I finish my last post, here’s a big ‘thank you’ to all those who have supported me this year, it means a great deal to me! Here’s to all the ostomates out there and the inspiring and beautiful ladies on the ‘Osto-MY fashion’ group on Facebook and my co-admins; Gemma, Amber and Becky – lots of love to you! Also, here’s to my Uncle, I miss you so much & you inspire me every day.

I hope you all have a fab New Year and that 2014 is a truly great year for you all; make itย yourย year!

Thank you to my readers for all your continued support and I hope you continue to enjoy reading.

Best wishes & Happy New Year!

Amy & Stacey Stoma ๐Ÿ™‚ x x

Ostomism Not Pessimism โ„ขย 

Dec 2012

December 2012, a year flies!

Happy 2 years Stacey Stoma!

9 Aug

So 2 years ago today Stacey was created!

Wow what a journey it has been, it has been the hardest journey of my life but I’d do it all again to feel how I do now.

It would have also been my Uncle’s 50th today, and thanks to him, his journey with Ulcerative Colitis and his own experience of having a stoma, I was less scared and had the courage to go through with my operation. He will always be such an inspiration to me. Sleep tight Uncle Graham โ™ฅโ™ฅ

I’ll do a post in a lot more detail soon about how far I’ve come, the ups and downs and other aspects of living with a stoma for 2 years and how you get used to it, but for now I thought I’d post some pictures from just after my operation and now.

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My stomach when it was swollen with my abscess before my operation, my stomach a few hours after, picture from my colonoscopy before showing the extent of the disease, cannula in A & E and pics from immediately after and soon after my operation.

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“Now you see me, now you don’t.” ๐Ÿ™‚
Ostomism not Pessimism ๐Ÿ™‚ Me today on my 2nd Stomaversary ๐Ÿ™‚

Hope my readers are well & I’ll post soon! Thank you for all the comments & lovely e-mails I’ve been receiving recently too!

Best Wishes from Amy & Stacey Stoma xx

My dogs & an update on the past few weeks.

9 Jul

Been chilling in the garden today enjoying the weather & thought I’d post some pictures of our gorgeous dogs; Bobby & Daisy. They are both greyhounds; Bobby is the fawn colour and Daisy the brindle colour ๐Ÿ™‚ When I am ill or upset they always know something is wrong and come to see me or lay on the floor looking sad and they are so quiet and lovely natured. Mum even brought them to the hospital doors to see me when I was an inpatient.

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Next Tuesday I have a barium meal x-ray to go to. I saw my surgeon and another member of the Gastroenterology team the week before last & they want to make sure I have got no active disease or narrowings above my stoma as I have been getting a lot of pain with stomach aches and off my appetite when stressed. I suffer a lot with stress & anxiety, it has always been a big factor for me throughout my life with IBD. When I say I suffer, I mean it affects my day to day life in a big way. If there’s any pressure on me to do things or I’m in new environments without a lot of support or understanding I break down. I ended up taking myself to the doctors a few weeks ago with it because my emotions have been terrible and I’ve been quite down and felt unable to cope with a lot of things going on in my life and I’ve been put back on my anti-depressants with the view to up the dose in a few weeks if I feel no better. Everything seems a mess at the moment and I’m stuck in a rut so to speak, not sure where my life is going or what to do with my career options etc and it all just seems to have spiraled.

On a more positive note, it’s my Dad’s birthday tomorrow so Happy Birthday to you Dad for tomorrow! ๐Ÿ™‚ We are having a takeaway tonight with my Auntie as part of it.

My Dad & I :)

My Dad & I ๐Ÿ™‚

I hope all my readers are well & thanks for reading.

Best wishes from Amy & Stacey Stoma ๐Ÿ™‚ xx

First day of Summer 2013

31 May

That’s tomorrow ๐Ÿ™‚

I don’t really know where to start or what to write as it’s been a while, a long while!

Health wise, my Crohn’s is in remission and the latest blood tests show my inflammation markers are normal. My iron levels are slightly low, they are at 8 when they should be 15, but the doctor said this doesn’t quite class me as anaemic. I’ve got some Spatone sachets to try to mix with juice etc as I don’t get on overly well with iron tablets. I seem to remember having those sachets before and not being a big fan, but going to try again as I really want to have the best chance of having good health altogether and good energy levels. Haven’t seen my consultant for sometime with one thing and another and not being in one place, so I’m seeing him towards the end of June hopefully for a review. The doctor on the phone who gave me my blood results explained that because I’ve had an ileostomy formed, and therefore have a shorter bowel than a person without, this is most likely the reason why I always have trouble with my iron levels and find it hard to absorb iron and keep a constant level within my body.

Thank you for all your comments & to my readers who have supported me & always do with this blog no matter how much of a gap I go between posting. It’s been fantastic & really heart-warming to see the amount of people still visiting, reading and benefiting from this.

Best wishes.

Amy & Stacey Stoma ๐Ÿ™‚ xx

Emotions & less than 3 weeks to go…

26 Aug

Until I move to Uni, yikes! Nervous doesn’t cut it, but I’m also excited for new beginnings and to finally get my life in the direction that I want and have some control over it, without Crohn’s Disease ruling my life and happiness.

I’m a bit up and down with things at the moment, not because of my ostomy, just a bit touch and go with my emotions in general. The other week, I had my anti-depressants upped by 10mg, but I’ve been forgetting to take them/not being wanting to take them. I’ve pulled myself together and started taking them again today, I guess I really have to try to help myself even if it feels pointless at times. People who say depression is a weakness are wrong, depression is a sign that you have been strong for pretty much as long as you can remember, but you just need some help. People who have depression should not feel ashamed. They are not alone. I don’t have many friends at all that I can talk to about how bad I feel sometimes, not properly, but I have two at the moment who I at least try to talk to, even if I do feel like they don’t need to hear me complain! I’m an introvert when it comes to help, very much so. I don’t like to be a burden to people, and as many of you know, it’s a lot easier to bottle your feelings up than it is to share them. I just keep battling on, in the hope that one day soon, things will get a lot better, like when I get settled at University and life really getsย under wayย and I have lots of new opportunities and people in my life. I find it very hard to talk to people about how low I feel at times, I think mainly its just an accumulation of everything that I’ve had to cope with throughout these past 20 years, I think anyone in my position would feel the same way in all fairness. I find myself just wanting to be told things will be okay, and have a shoulder to cry on, a shoulder I feel comfortable to cry on. I find it hard to eat, my appetite is all over the place. I either want to eat loads, or I can’t even manage a biscuit. I’ve spoken to my Dietitian about it, and she is great. Sleep wise, I just can’t switch off on a night until the very early hours, that’s when it hits me the hardest. I can go for days without that much sleep at all, then I can just spend a few days sleeping all morning and then it’s afternoon before I even realise and some days I don’t even feel like getting out of bed, but I still do, I try. Friends that I thought would be there for me thick and thin, don’t even know how I’m feeling or how difficult I find things at times, because they haven’t been there to even try and support me, they are too wrapped up in their own lives. I’d never wish this on anybody else, nobody should feel alone.

Some things I cannot stand at the moment, however, are, for example, if you aren’t even going to try and understand, then don’t get mad at me for being low in mood. I’m sorry, but even some of the people that are closest to me act as if I’m being in a low mood for no reason….I’m not a bad person who is just moody for no reason. Then when I finally pluck up the courage to talk to someone, 9.9 times out of 10, people just throw it all back in my face and just say “things will get better, you’ve got no reason to be depressed” and that’s the end of that. Still doesn’t change the fact that I feel how I do, in fact, that infuriates me even more. Depression is not a competition, it doesn’t matter who has the most or least rubbish going on in their lives…Everything affects everybody in different variations as that individual person. Some thing that might not bother you, might crush somebody else. A lot of what we say has such an impact on other people, so think before you speak, or at least try to understand. People just want to know you are there for them sometimes, they don’t want to hear it if you don’t get why they are depressed. People can’t control it, if they could, do you think they would choose to feel this horrible? No. I’ve had a few counsellors, and to be honest, I just find it difficult and not of much help at all. One thing I do find that helps me is music & singing, I adore singing, it channels a lot of emotion.

On the other hand, I do have a lot to look forward to, and I’m using that as the basis to get me through at the moment, as nervous and apprehensive as I am. The extreme few people that I could count on one hand who actually do try to understand and want to help, I appreciate you so much. No matter what I feel about myself, I know I am strong. I am being strong right now, and doing my best to just take everyday as it comes despite how I feel inside a lot at the moment. It took me a lot to write this post, but I think that shows I am strong in showing people, that even the people who seem the strongest, fall down sometimes. Please bear with me ๐Ÿ™‚

Less than 5 weeks to go…

14 Aug

until University! Wahooooo! ๐Ÿ˜€

I have got so many mixed emotions about it, but I mainly have butterflies & am extremely excited for a fresh start & new beginnings!

Every new beginning will bring new experiences with Stacey, mainly good all being well! I just keep reminding myself that Stacey is the reason why I am here and that she is not a hindrance. Sure, there are times when I get annoyed and start to wish I was without her, but then I remind myself, well I wouldn’t be here without her, so I’d rather have her and not change a thing in that respect. Even if I hadn’t had my operation and by some miracle I was alive, I would be in a severely worse state that I am in now…I would haveย noย life, whereas now I do…The sky is the limit, as they say and from one of my favourite songs “Won’t stop ’til I feel the sky at my feet, my dreams are my wings.” This time last year, I wasn’t physically able to go to University, so I’m very lucky to have been able to defer my offer for a year and start when I’m as ready as can be this September.

University has been great so far about my medical needs and my ileostomy, which makes me feel even more comfortable about going. They have been so great and literally can’t do enough for me. Sure, I am dreading the times when Stacey decides to conveniently start talking in a lecture theatre like some erupting volcano but hey, I’ve been through much worse right? There will be my moments where things like that happen and, A) I just want to cry B) I want the ground to open and swallow me up or C) Both. One thing, however, which I find keeps me sane (well, half sane) is humour. I try and see the funny side of things like that with Stacey as much as I can, as to be quite honest, if I hadn’t learnt to laugh things off like that now or other things, then life would be extremely miserable and I would have lost my character and a lot of my personality. I am entitled to have my down days as well, not going to beat myself up about it, to be honest, I have reason to have my down days, I’ve been through way more than your average 20 year old has, but you know what? I am strongerย for it, despite going to hell and back.

I’ve found out who two of my flatmates are going to be, and I’ve told one of the girls all about my ileostomy, and it made me so happy and a lot more comfortable how accepting she was of it and how interested she was. She assured me that she’s going to be there to help me through the hard times especially and that if I get any stick for it then people aren’t worth my time and she will stand up for me. It is really nice and lovely to know that someone would do that for me and that people will see me for who I am, bag or not. Like she said to me, the bag is just a part of me, it doesn’t define me. She’s right.

Roll on moving day!