Archive | June, 2012

Lessons learnt.

30 Jun

So I’ve learnt a very big lesson these past few days…Just because you feel miserable/depressed/upset/whatever you want to call it, and feel like wallowing in your own misery, this does not mean that you should not eat, and even more so, should not drink anything whatsoever in about a day and a half other than a cup of tea. Probably due to the fact that more alcohol than I usually drink was to do with it didn’t help either, let’s just say, last night I wasn’t in a very good place whatsoever.

I honestly felt like I had taken Tramadol but not quite that bad. Those of you who know me well enough will have heard of my Tramadol horror story back in the days before StaceyStoma was created, a good 2 years or so ago this was. Well, I got taken into A & E in absolute agony, paracetamol wouldn’t shift the pain, neither would much else, so the next step was Tramadol…Boy oh boy did I feel so horribly surreal like I couldn’t control my body, in fact, like I wasn’t even in my own body. Tramadol made me go onto a completely different planet, you might be thinking “what’s so bad about that?”, well, after the brief 30 seconds at most that I felt incredibly relaxed and spaced out, my body started to work against me, nice. I rapidly felt extremely close to passing out and felt like my head weighed a ton, felt like I was going to be sick or have the runs, I couldn’t decide which, it was like it couldn’t decide, then when I got up to go to the toilet to be a mess in some kind of dignity, my legs went underneath me and the nurse had to rush and get a wheelchair and take me to the toilet. By this time I was incredibly helpless and besides myself, then when she got me into the toilet, I couldn’t even step from the wheelchair to the toilet, so she had to lift me. At this point, I decided I didn’t want the toilet anymore, that urge went and instead I tried to get back into the wheelchair, collapsed into the wheelchair. Next thing I know, I’m on my hospital bed throwing my insides up and desperately hoping to feel on planet Earth incredibly soon. Then, after the ‘joys’ of feeling so horrible, I got taken down to Ultrasound to have my stomach prodded around at for a good while, convenient. TRAMADOL? NEVER AGAIN. Same with anti-sickness, that are supposedly to stop you from being sick, they just make me sick. Oh how I love how my body is awkwardly different, not.

How I did not throw my guts up (what’s left of them) last night, I have no idea. I was so close and Stacey was surely hating me for having nothing to drink or eat in forever, how incredibly stupid of me. I forced water down my throat, much against my stomach’s will, and still didn’t feel any better. Instead, my lips felt incredibly dry, my leg muscles killed and I could not lift myself up off the toilet floor because I was so dizzy and weak. One minute I was frozen cold, next minute I was sweating. This must have carried on for a good hour, until somehow, my body started to work with me a little as I sipped more water and as I laid there helplessly. Every time I tried to stand up I felt incredibly sick and weird, then finally, after managing to slowly consume 4 cups of water, I felt a tiny bit better. I still don’t feel 100%. Probably the fact that I’m anaemic as well will have a lot to do with it, didn’t even think of that!

Lessons learnt;

  1. Do not drink more alcohol than you are used to with no food in your stomach or other non-alcoholic fluids. It will end bad, no matter how hard you pray it won’t.
  2. Never ever go a day without having a good amount of water or food, especially if you have an ileostomy.

Dehydration is much more common for ileostomates, therefore it is a lot harder to keep on top of your hydration. This is because of the lack of colon to absorb water and nutrients back into the body and use them for what your body needs, and because of the watery output of the ileostomy because of the absence of the colon to remove water from your waste.

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Swimming with an Ileostomy

20 Jun

Many people wonder; “Can you go swimming with an ostomy bag?” The answer? OF COURSE YOU CAN! 🙂

You have to remember that your ostomy gave you your life, it wasn’t formed to be a hindrance. You can do whatever you want with an ostomy, the sky is the limit & even then I say aim for the stars!

Today, I went swimming for the first time since my operation, 10 months ago.

Swimming is the ideal exercise for people recovering from surgery as it is a weight-supported exercise & it enables you to work all the muscles like the core muscles around the abdomen and other areas, helping you strengthen the muscles without putting them under too much pressure or strain.

I was so pleased that I went, it was fantastic to be back in the water again. Did I have problems with my stoma output or the bag adhering to my skin? No 🙂 Was I worried about people noticing I have a bag? No. The truth is, you couldn’t even tell. I wore a blue patterned swimming costume and felt very confident, I forgot I even have a bag whilst I was swimming apart from the one occasion nearer the end where I just casually wondered if it was still adhering to my skin okay and then told myself not to worry because it felt fine.

The pool was great, I am such a child at heart & always will be! The big water slides were closed for their maintenance today & will be for tomorrow but a smaller slide was open and the rest of the pool, which had rain sections & the wave machines were activated every half an hour for 5 minutes! It was fantastic! In between the wave machines, I swam at a leisurely pace and took regular breaks, especially as it was my first time swimming since my operation. An hour and a half my bag lasted, and could have easily lasted longer! 🙂 I changed it after I got out the pool quickly with no problems 🙂

I was worried that swimming might hurt my stomach muscles, from having them cut in surgery and having the big scar down my tummy. Truth is, I only felt my tummy mildly aching around my scar once towards the end, the rest of the time I didn’t even notice it or feel any different.

It was also great to relax in the hot tubs half way through and after for a while. It was so relaxing and a great way to indulge and feel pampered and totally refreshed after my swim. I went in a hot tub once before after my operation and my bag lasted out for one hour without any sign of giving up. Just things like that make a huge difference. 10 months ago, even 2 years ago, I didn’t feel well enough to swim or be in a hot tub – I would be in too much pain and would have a major problem controlling my bowels and anxiety.

I had a bit of a down day yesterday with my bag. Nothing was wrong with my ostomy, I just had one of those down days where I remembered it is something I will have forever, & then I just reminded myself that I am stronger because of it & it is part of what makes me, me. Stacey gave me my life, & for that, yes I will have my down days as anyone is perfectly entitled to, but it will never ever change that I would not swap her for the world. Without her, I wouldn’t be here & to be quite honest, having a stoma, even though it can have its problems sometimes, is the best thing that has ever happened to me.

“Without struggle, there is no progress.” 

Iron-deficiency Anaemia.

14 Jun

So I’ve been feeling overtired recently, and it’s been getting worse. I have also been having palpitations, feeling dizzy and have not been able to even push myself slightly or manage jogging without being so close to blacking out. So I immediately thought it was Anaemia, as I have had it on several occasions before.

I had blood tests done on Monday, & had a phone call from the doctor late Tuesday afternoon, saying he had my blood test results back. I rang back on Wednesday morning, as he left me a voicemail, and I was right in my suspicions; I have Iron-deficiency Anaemia.

Iron-deficiency Anaemia is to do with a protein in our blood, Haemoglobin, that carries oxygen around our bodies. Iron can be provided for our bodies through the main ways of food and drink, by our bowel, into our bone marrow. This is where our blood is produced and here, iron teams up with proteins to make up Haemoglobin. When our bodies don’t have enough iron, then the sufficient amount of Haemoglobin to meet our bodies’ needs cannot be produced, leading to our red blood cells shrinking very small, which in turn means that sufficient oxygen cannot be transported throughout our bodies, for example, to different organs.

Symptoms of Iron-Deficiency Anaemia include things such as:

  • Appearing pale
  • Experiencing Breathlessness
  • Feeling very tired
  • Palpitations
  • Mouth Ulcers
  • Swallowing Difficulties
  • Weak and Brittle Nails

I also seem to be experiencing a lot of headaches and heartburn, probably connected to Anaemia or probably not, I am unsure. My GP seems to think my Anaemia has developed slowly since my surgery to have my colon removed, as because I no longer have a colon, my absorption of different nutrients out of the food and drink I consume is different to that of a person with all their Digestive System intact.

I have been prescribed Ferrous Sulphate tablets, starting at one daily to start with, moving up to two if I can tolerate them. I have never got on with them before, so I am hoping now I have had my surgery things might be different. Before my surgery, they would make me severely constipated and make me feel very nauseous, so I never took them and instead had to have blood transfusions.

Let’s hope my body accepts them this time and I start to feel a lot more energised in a few weeks! I want to get back into jogging again properly, especially as the Race For Life is coming up!

I hope you are all well!

Best Wishes from,

Amy and StaceyStoma 🙂 xx

Empathy differs from sympathy.

13 Jun

This is such a great thing to read, of the definition ‘Empathy’. This relates to my last post and feel it should have a post of it’s own. Thank you to Larry Pilarski for this, check out his facebook page at the bottom of the post! 🙂

E M P A T H Y (relating to those who have ostomies)

Empathy differs from sympathy. People in the medical, nursing and healing professions can offer sympathy for a patient’s disease or defect and the need for an ostomy.

The offering of empathy, though, can be done only by ostomates; only they have the unique understanding derived from experiencing a similar situation.

Without even a word, the sight of a vigorous individual with an inconspicuous ostomy is testimony to the acceptability of a stoma.

Beyond the reassuring appearance comes the shared concerns and triumphs, solutions to problems, answers to questions.

This exchange makes easy the rehabilitation of new ostomates and is a source of enormous pleasure to those who are reaching out to a fellow human being.

“To Know The Road Ahead . . Ask Those Coming Back!”

The Ostomy Alliance
http://www.facebook.com/ostomyvisitor

 

Ignorance

12 Jun

Some people will never be mature enough to stop posting ridiculous things over the internet. For example, on Tumblr, there is a picture going round which is a cartoon someone has made of a stickman sitting at a computer and it says “Google Stoma, I dare you”, then they look horrified and pull away. Others consist of people saying things like “NEVER google stoma, it cannot be unseen” and writing genuinely rude, ignorant and sick comments about it. It makes me SO angry. 

Do these people not know what it is like to have a loved one suffer from any type of illness or pain? Have they not ever felt an ounce of pain themselves? Do they ever not stop and think how lucky they are to have health? Do they ever stop for one moment and think about doing something positive, rather than abusing their bodies to hell with drugs or alcohol or smoking ridiculous amounts? Do they ever stop to think that maybe, one day, they will get ill and require medical help? Obviously not. It will just be karma that one day, they get ill, or for whatever reason require something that will save their lives, like a stoma. 

A stoma is far from disgusting. Okay, let’s all admit it’s something out of the ordinary when you see one for the first time and yes it does take some adjustment, but what strikes me is these people who are so cruel, obviously never imagine what they would rather it be if it was a matter of a relative needing a stoma to save their life. For many of us, having a stoma saves us, it is the difference between life and death, like it was for me. Even if it does not make the difference between life and death, it changes the quality of somebody’s life for the better and gives them a greater shot at experiencing health and happiness. I went through 13 years of hell and endless suffering meaning I had little life before I got my life given to me and saved, all thanks to having something that is apparently so disgusting.

Even if I never required one, and somebody I knew needed one, I would never look down my nose at them for having to have one. It is cruel, naive, rude and plain ignorant to ever undermine the pain or suffering people go through and judge them for something they have had to have or made the choice to have to try to get their health on to a good level and make something out of their lives. My Uncle had to have one over a year before me, due to Ulcerative Colitis, and to me, it makes him no less of a person. In fact, it makes him much more of a person and more beautiful for all the suffering he has gone through and came out fighting with a smile on his face, reluctant to let the life of hell he had before beat him to a pulp. 

Whether it’s a stoma, an amputation, any change to the body or scars, we should be able to feel beautiful. Our scars and changes we have had to undergo are what make us beautiful and entitle us, more than those who are cruel and so naive, to be proud of who we are. I will never tolerate any bullying or cruelness. 

Chances are, people have been to hell and back more than you could ever imagine, to get to where they are. Don’t judge, just because someone has to have a hole in their body or a stoma out of their stomach or neck, or wherever it may be. That was their lifeline. Appreciate the life you have whilst you have it. Life is way too short for cruel remarks and bullying.

If you still find it hilarious to bully and make such unthoughtful comments, then seriously re-evaluate your life. I guarantee you the day when you drink yourself stupid or are too busy taking life for granted, karma will come right back ground and slap you in the face.

I’m so proud of my stoma, it gave me my life.

10 months on, and me and StaceyStoma are doing great, here’s to life.

My first tattoo.

8 Jun

Hello again, two posts for today! 😀

Image

My ‘Butterfly of Life’ tattoo ♥

I also thought I would submit a picture for you all to see of my first tattoo. My motivation behind the design was my life-saving operation; the butterfly symbolising freedom & new life, purple in there for IBD Awareness, colours to show that life is now colourful and of course, that amazing date that my life was saved underneath and I was given StaceyStoma 🙂

It is on my left shoulder, and I am so happy with how it has turned out! I wanted it to look realistic and be something of great meaning & symbolism to me for the rest of my life. Needles are NOTHING compared to the pain of IBD.

Image

If you can beat the torture and agony IBD puts you through, you can do anything.

Until next time,

Amy & StaceyStoma xx

Fingers crossed for a healthy & happy future for Meg ♥

8 Jun

Hello guys, girls & fellow ostomates!

I hope you are all well.

I have been thinking a lot about a close friend today; Meg, who writes http://www.stanleystoma.wordpress.com. She has had Stage 1 of her J-Pouch Surgery done. It must have been, and still be, an incredibly terrifying thought for her about adjusting to life with the J-Pouch and worrying whether it will work for her or not. It is truly inspirational the way she has always fought IBD and never let it win, she is a truly amazing person and I am so privileged to know her. Meg wasn’t planning to have her surgery this early, but due to her continuous, rectal flares she had to make the brave decision to have her surgery brought forward early. The news I have heard so far (about 2 hours ago) is that she was in recovery, and her boyfriend was waiting for her to be taken into the High Dependency Unit. As far as we know so far, there were no complications. I have my fingers and toes all crossed for her. She deserves a life of happiness and health now more than anything, she has never given up & deserves to enjoy life. Please keep her in your thoughts & prayers!

Sending Meg lots of love ♥

Amy & StaceyStoma xx

P.S. If you want to find out more information on the J-Pouch, read this article: http://ibdcrohns.about.com/od/ulcerativecolitis/a/jpouch.htm 🙂

Or, indeed, visit Meg’s very own blog: http://stanleystoma.wordpress.com 🙂