What It Feels Like To Be Cut Open & Have Your Insides Taken Out

Obviously I was put to sleep during my surgery. I can’t sit here and reminisce on a memory that I wasn’t aware of. From the moment I went into the operating theater until a couple of hours from coming out, I was out like a light. And the idea of the surgery was most definitely more frightening than the actual thing itself. But when I had eventually come out, I’d awoken sooner than they’d expected. According to my parents and the doctors, I’d tried to fling myself off of the operating table. Luckily I was stopped, otherwise who’d known what else could have gone wrong! https://i0.wp.com/images.wisegeek.com/four-surgeons-in-green-gowns-and-masks-standing-over-patient.jpg

What I can tell you though, is that after the surgery, you feel weird. Not just, ouch, that hurts weird. But kind of empty. Of course, I’d had my large intestine taken out so you could say I felt a little lighter, but it wasn’t just that. I didn’t completely understand what had happened and I no longer felt like myself. I felt like it had all just been a dream, and therefore I had no need to take it in.  I’d gotten so used to feeling ill weeks prior to the surgery that I wasn’t ready for it to just be gone. It was great not having to run to the toilet every two seconds, and just being able to lay there – but it had been replaced with a whole new meaning of the word pain. My body vibrated as I forced words out of my mouth, gasping for help in a robotic, monotone whisper. My stomach stung though my scar felt numb. Not the sort of numb where you can’t feel it though. Sort of like the aftermath of intense pins and needles. It hurt to move so I didn’t even bother attempting to for a few days. I was forced to when my catheter had slipped out of place though. I’d never realised how much we take our stomach muscles for granted! The simplest tasks had become virtually impossible!

It’s odd looking down to see a big red scar down my stomach every day. It’s not as if it’s one of those scars you wouldn’t notice if you didn’t know. It’s so blatantly obviously there, in a line that tells you “I’ve been wide open!” I don’t mind the scar so much though, it’s just the image of what had happened for it to be there, sitting o prominently. I’m no more educated with the surgery than you who reads this now, either. Which is even scarier! I have no knowledge of what it looked like, how it felt or in what order things were done. And that’s slightly more terrifying, it’s almost as if it didn’t happen!

Recovery after the surgery itself isn’t what you’d expect, either. Of course I was sore. But it was more of a drain than anything else. I definitely suffered with extreme fatigue, afterwards. But again, that is one of the major side effects of having an ileostomy. Your body has trouble absorbing as many nutrients as before, and you are more at risk of a B12 deficiency (iron deficiency). It takes a while to get back on your feet and to adjust to things. But to be honest, being cut open has been the least of my issues throughout the whole experience. And it’s weird how quickly my body has adjusted to things. Although I felt different after the surgery, I’m surprised at how normal my body feels. I genuinely did think I’d notice I have such a large part of me missing. But I guess when you compare it to the rest of your body, it’s really not that bad. And when you come to think of it, I don’t think anything is really that bad. Not when you’re alive.

What’s The Difference Between An Ileostomy And A Colostomy?

I’ve seen a few confused comments regarding the difference between a colostomy and and ileostomy. Whether one is worse than the other or whether they’re just different names for the same thing. A term colostomy also seems to be more well known than ileostomy, and a lot of people get mixed up and tend to just use this term regardless of the actual name.

Although it looks and sounds pretty similar, a colostomy and ileostomy could not be more different. A colostomy is an opening of the large bowel onto the surface of the tummy (abdomen), whereas an ileostomy is an opening of the small bowel onto the surface of the abdomen. You wear a bag over the opening, to collect the waste matter from digestion that would normally be passed from the body as a bowel motion (stool).

You can also remember it from the ‘colo’ and the ‘ileo’ parts of the words. The longest part of the small intestine is called an ileum. And the colon is the large bowel. Forming words colostomy and ileostomy.

As I have an ileostomy, I had my colon taken out, but they a part of my rectum so that it would be possible to have a reversal in the future. I’m not too sure what happens with colostomies. It’s not really my grounds to talk about it and I don’t want to google it and end up misunderstanding, but to my knowledge, it seems that you still have a small and large bowel.

I think it’s important that you take in the differences.. and notice that colostomy and ileostomy are very different. I’ve had moments where I’ve found it a little insulting that it wasn’t looked into a little more, for example when a journalist was writing an article about me, and started the article writing ileostomy and finished it saying I had had a colostomy – which of course are two different procedures. You wouldn’t say you had ulcerative colitis if you had crohn’s, would you? It’s no big deal, but I find people will open up to you more and become a little more accepting when others are taking the time to learn and acknowledge.

I’m no doctor and I certainly am not wikipedia so if you did want to look further into it, please do, because I’m not great at explaining things. And it can be quite hard to explain without writing it! So I hope I have simplified it a little, and you now know the difference! I still don’t understand what’s gone on with my body half the time…. Do I have ANY organs left or??

597836-34729-21

Needed a change… So I Dyed My Hair Blonde!

I’m not sure which thing happened to prompt me into changing my look, whether it was my outburst of awful roots or sheer boredom – but either way I’m pretty happy with the way it turned out! I know it’s not in your face blonde, I chose a dark blonde, something a bit more subtle!

I decided last minute whilst in town that I wanted my natural hair colour back. Believe it or not – that’s blonde! I haven’t had natural looking hair in so long, even when I was younger I’d bleach it. It’s crazy how much a hair colour can change the way you look, and I haven’t felt this much like myself in such a long time! It’s scary, every time I look in the mirror I feel like I’m looking at my 12 year old self! Okay that sounded kinda weird..

I’ve probably damaged my hair for the foreseeable future with the amount of dye I had to use to get rid of the red, but luckily my hair’s very thick!

It’s strange how doing something such as dying your hair can make you feel so positive. It’s given me a new sense of confidence. Which is why I’ve decided to write about it on my blog today, not just to tell you what I’ve been up to but to demonstrate how the littlest things can make you feel better about yourself! I’m not saying anybody should change how they look to feel good about themselves. But if changing something about you makes you feel better about yourself, why not do it?!

I’m currently trying to make a change in myself, as well as my image. I want to be healthier in myself and more active. I’m going to be eating better and focusing on more exercise. I don’t think I have an excuse not to anymore!

I think I’ve come out of my depressive stage now, haha! I’m feeling a lot better and more ready to start working on new experiences to write about. I have some really exciting things coming up soon, and I just can’t wait to share them!

I just want to say a massive thank you to those that continue to read my blog. Sorry that this wasn’t really a topical blog post – but I just had to show off the product of 2 days wearing clingfilm on my head!

Screen Shot 2015-06-14 at 18.48.40

What It’s Like To Have My Boyfriend Clean Me Up Every Day

If you read my previous blog post about having a bad week, you’ll know that recently I’ve been having some issues with my ostomy. So much so that it has been hard to rely on just myself to sort it out. Since I’ve been having trouble sizing it, alongside output problems, it has become a little more unreliable than before. Meaning that when I’m cleaning around the area, I never know when it’s going to be safe to leave it bare to place my ileostomy bag on. At the beginning of the week, it was a case of my boyfriend forcing his way into the bathroom because he could hear how upset I was getting. He would help no matter how frustrated and embarrassed I got. I mean… nobody wants their partners to have to help them clean you up, do they?! Now, it’s become the norm for him to come in with me when I go to change it every evening. He sets up all of the equipment, wets the towels, and helps sort me out.

He’s been great and made me feel a little more at ease with all the negativity that’s been sinking in these past weeks. And it’s nice having him there. It’s weird of course, I’m so used to doing it all myself. I do also feel very upset with the situation.. because it feels like I’ve lost control over the one thing I had control over. I mean, I have no control over my digestive system anymore. I can’t determine when something’s going to happen. Accepting help for the one part you’re meant to be okay with is the hardest part of all. Changing the bag was one thing that was down to me, my decision. And to have to rely on someone else for something so personal, feels a little undignified. I was worried he’d be put off me after seeing what he had.

I’m lucky to have somebody there to help me. And I do appreciate everything that he does. But I just wish he didn’t have to do that, and didn’t have to see me in such a way. But, that’s life. And I guess to get through these sorts of situations you have to feel uncomfortable to get comfortable.

I have had an order of uncut bags from SecuriCare which have already begun putting my skin at ease, so I’m hoping over the next few weeks I’m able to gain more control over my body and become a little more independent. I’m looking forward to being able to use the bathroom by myself for a change! I know I’m not a burden or anything but I can’t help feeling like one sometimes. I just hate to rely on people. Especially for something that should be so easy.

I hope I haven’t put off anyone who may be needing or is questioning having stoma. There has been a lot to thank it for over the past four months. But I do feel the need to write when I’m having a bad time. It’s quite therapeutic but I feel may also give people in my position something to relate to. It’s nice to have something to relate to, I think.

11252243_995598513830618_4129433549225164700_n

I’ve Gained 2 Stone Since Surgery!

PicMonkey CollageThese pictures show me just after coming home from hospital and me now. It wasn’t until I compared these two pictures of my legs together that I realised just how much weight I’ve put on since surgery! I decided to use the pictures of my legs because they are where most weight has been put on, although I have put on around my stomach and face, also.

By no means am I posting these pictures to complain and call myself fat – I know I’m not – I was just shocked at the difference in just a few months. Of course, the first black and white photo shows me underweight and unhealthy. But I’m really hoping to not put on too much more weight. Although I started gaining from the steroids, I cannot blame them for this! I have been eating like a pig and not exercising at all. And I probably won’t exercise either, lets be honest. But I think I should probably start eating better. If I decide to have further surgery I’m going to need to be healthy enough.

Anyway, these pictures are also a little bit of a revolution for me. A couple of years ago, I would’ve cried at these pictures and used the black and white photo as an “aim” as I abused my body. Now, I can laugh it off and realise it’s just a little bit of weight. And that’s a great feeling… to be able to laugh off something I once feared. Although, I have always had a bit of trouble with losing weight. I hate dieting. And I’m rubbish at following any sort of meal plan. Also, I just cannot be bothered to spend the time counting calories etc. I want to be healthy and stay slim but I find it hard not to indulge in chocolate… on a nightly basis. But – I’m willing to stuff it back in the freezer if it makes my body feel better! I just don’t really want to be putting anymore weight on, not in such a short space of time.

So.. if any of you have any tips on how I can do so, please… let me know!

Please feel free to comment any healthy eating techniques that have worked for you!

I’m Having A Really Rough Week – Someone Take This Pain Away!!

I’ve been sat in the same position in the same place for the past week, because I simply cannot do anything. I’m not sure what’s gone wrong but the past 7 days has been nothing but aches and pains followed by a whole heap of frustration. I’m really just having a bad time recently with my ostomy. I’m pretty sure it’s shrunk, and as I made the silly decision to order all my bags pre-cut, each bag is leaving a certain amount of skin exposed; meaning my skin is burnt, red and sore. From the soreness leaves me having few options for clothing, I haven’t been able to wear anything bar underwear and pajamas lately – anything tighter has me wincing in pain.

Trying to place the bag in a way that the least amount of skin could possibly show means I’ve been changing it countless times. One day I actually amounted up to 10 bag changes. From the frequent skin pulling my abdomen feels tender and my scarring feels swollen. It doesn’t help that I’m a little obsessive about the cleanliness of my body. And knowing that the bag just isn’t in the right place has left me more exasperated than I can even begin to describe.

I feel completely broken this week, each evening leaving me in tears of infuriation. I don’t care how silly this sounds to you, but this week has really made me question my decisions regarding the option of reversal. You see, changing the bag was probably the one control I now have regarding my digestive system. And I just feel it’s been taken away from me. I can’t even keep my skin healthy, for gods sake. I just want to be going out and doing things instead of sat here on my sofa feeling sorry for myself!

I feel very lucky to have had my boyfriend with me the past week. He’s been there to help clean me up and change the bag with me. He’s taken me shouting and screaming at him and really looking after me. But it’s also taken up hours of the evenings we have together, and some of my self-esteem with it. I’m filled with paranoia over leaks and generally just not feeling myself at the moment.

I’ve let myself get so upset over these frequent bag changes and bad skin, but I mean, when you’re having to repeat the same procedure of taking a bag off, cleaning, wiping, drying, and placing a new one on up to ten times a night, you begin to wonder what the hell you did to deserve this shit. No pun intended.

I’ve placed an order with SecuriCare to send me some of their lovely LBF wipes to help heal my skin, and they have also given me next day delivery of uncut bags, an amazing service considering there can be up to a 2 week wait with other services. I’ve also got a hospital appointment on Wednesday just to get it all checked out.

I’m really hoping my body begins to heal soon, as I’m not sure I can take another week living in my PJ’s!

I’m sorry this post hasn’t been humorous, happy, educating or exciting. But sometimes, that life.

photo(14)

6 Times My Ostomy Bag Has Been An Inconvenience

I’d say probably one of the most embarrassing things for a lot of people is farting in public. Just imagine, everyone staring around thinking “was that you?”, red faced hoping nobody realises you were the culprit. But, I mean, at least when you have a fully working digestive system, you are able to control it. But when you have an ostomy bag? You can’t. You just can’t. Most of the time I have absolutely no idea when it’s going to happen. And I mean, when I’m at home I can just laugh it off and blame it on the bag. But there have been a number of times when it’s just too damn awkward to talk about it. And these are just a small few of those ever embarrassing, awkward, inconvenient moments that are just too uncomfortable to remind people that flatulence is funny.

1. When in a meeting – I had a meeting with a whole board room of people to discuss my blog contract, and it seems my ileostomy wanted to make it’s own entrance, and managed to make it’s presence extremely clear with a whole load of noise. I did have to apologise beforehand and say “yeah it might do that during this”. All in good humour.

2. When out for dinner – I mistakenly ordered chilli con carne one time when out for dinner with my family. Watching someone run to the toilet holding the whoopie cusion under her clothes every 10 minutes when the toilets were upstairs, through the crowds of other people pleasantly eating their dinner, is not something I’d class as evening entertainment.

3. When wearing tight clothesphoto(5) in public – I mistakenly decided to wear a tight midi skirt on a train journey, forgetting how long I’d be on a train with no toilet. It’s safe to say people were questioning what I was hiding under that skirt.

4. During sex – Normally, intimacy is absolutely fine. But there have been the rare occasions where I’ve had to stop halfway through and say “I’m so sorry but I’ve really got to go and empty my bag” and also apologise for the ridiculous amount of noise it’s deciding to make from being pressed down on too hard. Just imagine standing on a balloon. Yeah.

5. When doing a presentation – I have a presentation to a support group of people, and to be quite honest with you I’m so glad I had a microphone to overshadow the noise it was making! Luckily everyone was in the same boat – so was more than understanding. I’m afraid I wasn’t taken very seriously though!

6. During a driving theory test – Obviously, you have to be silent during your driving theory test, otherwise you’ll be disqualified. It seems my ostomy is a bit of a rule breaker and went all out to make a point. I just hope people were too distracted by their nerves to notice. Although I’m sure it was pretty hard not to.