Archive | November, 2011

Volunteering & Supporting Others

24 Nov

I currently volunteer at a pre-school 1-2 mornings/days a week in town, which I love. Up until last week I have just been doing two mornings per week, however, I did my first full day last Monday from 08:45-5:00pm, needless to say it was very tiring! I spent most of last Tuesday sleeping and feeling very weak and a little under the weather really, but this was probably to be expected as it was my first day where I haven’t had any time to rest since my surgery, so I’m not used to it in the slightest! I really enjoy volunteering at pre-school, and it really makes me feel like I’m doing something worthwhile and giving a positive contribution to the community. I feel that as time goes on I will get used to having busy days but of course it is going to take quite a while taking one step at a time. My first full day taught me one thing though, and that is, that whilst I want to be up and about being busy and living life to the full each day, I am only just over 3 months after my operation, and I have to listen to what my body is telling me and know when to rest. I have to acknowledge that rest is what I need and I am still recovering, I have to find a balance really. So I will see how I get on the next times, then I will decide whether I stay for the morning or the full day. I have a feeling these next few weeks are going to be very testing physically and energy wise, I have a lot going on!
I also went to see a girl last Wednesday who is a bit older than me, who is in a very similar situation to what I was in before I had my surgery. She has had all medication options going and her gastro thinks its time for surgery. She is very scared, understandably, and going to see her and talking to her last night really brought everything back to me, specifically how I was before my operation and what a good quality of life I now have because of StaceyStoma. Obviously, I don’t want others to suffer, but I really enjoyed talking to her and showing her my bag and supplies etc and talking her through how to use an ileostomy bag. It is horrible to see others suffering, but I am afraid that’s life, and Crohn’s Disease affects a lot of people. I am just glad that I could help her, even if it was just a little bit. It makes all the suffering I had worthwhile, and helps me turn something negative into something positive. Her gastro, who is my gastro too!, has told her he will do all he can to save her bowel, but he thinks that it is very likely that she will need a permanent ileostomy forming in a few weeks time. I am really glad I can be there for her, and have told her that if she needs to ask me anything or is worried and needs a talk, or wants someone to go see her in hospital or out of hospital, I am there. I really benefitted from talking to a girl who already had an ileostomy whilst I was in hospital who is a cadet nurse. It was like Déjà vu with a lot of the things she said and we could both relate to each other in many ways. My operation has opened many doors for me, it is quite unbelievable. After I had been to see her last Wednesday, I came home then it was straight out again! What a busy day! I went to a classic car meeting with my Dad and a few of his friends at a pub about a twenty minute drive away, it was a good night. I enjoyed a Smirnoff Ice and an Orange and Passionfruit J2O and some crisps! And rolled in about 11pm. It was another very long day for me, I was shattered. Needless to say I slept most of the day last Thursday, but I’m just taking each day as it comes, and resting when I can!

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Children in Need & My Brother’s Birthday

24 Nov

Hi again everyone!

So I dressed up as a princess for children in need! 😀 it was a good morning volunteering at pre-school, we made lots of buns and Pudsey Bear badges then sold lots of buns at dinner time when the children went home then more were sold at home time in the afternoon! It was really great to see everyone participating in raising money for Children in Need 🙂

It is my brother’s birthday today, he is 13!

Got some exciting things coming up in the next few weeks! Excited! 🙂

Stacey is doing well but has quite watery output at the moment so trying to get that under control at the moment. Still so thankful Stacey has given me my life! 🙂

3 months 8 days post op :)

17 Nov

& here is Stacey:

20111117-105629.jpg
We just enjoyed a lovely shower without a bag on, we both love it this way 😀 makes me feel really clean and enables me to clean Stacey properly and for my skin to breathe! 🙂
I think she’s quite cute, but I am biased! :p she is now 25mm in size so has shrunk 5mm since my operation.

I love her! 🙂

Alcohol, Nights Out & My Ileostomy

13 Nov

I went into town last night to meet my best friend and her boyfriend for a few drinks and have a good catch up! Was a really good night, filled with lots of laughs and yummy drinks! I’ve had a few nights out since my operation from about 2 months and a few weeks since my operation, but the first time I went out I stayed out for about an hour and didn’t drink any alcohol, as it was really tiring and my scars started to hurt on my tummy and bum!

Then the past few times I’ve been out (just before 3 months and just over 3 months), I have stayed out until around midnight, much improvement on the first time! 🙂

With alcohol, from my own experience so far and from talking to people with ostomies (especially colo and ileo) I have found that alcohol and fizzy drinks affect one person different to another, just like food and drink with Inflammatory Bowel Disease, and that everybody’s stoma is different with it. Some people can’t manage drinking really fizzy drinks especially fizzy alcohol like beer as they find it gives them painful wind or doesn’t agree, where as others can manage it no problem. I’m the same with fizzy drinks – Coca Cola I can’t really manage at present after surgery without it making me feel really windy and uncomfortable, yet I can manage Pepsi in smaller doses no problem such as a can with food. Alcohol wise, I tried Malibu & Coke, which didn’t agree to be honest, on two occasions. It made Stacey wriggle quite a lot and feel very uncomfortable a short while after. I have also had Smirnoff Ice, Red WKD and a tried a “Cheeky V” cocktail (Blue WKD and Port) and have had no problem with these so far apart from they make my output watery, as is the case with alcohol and most ostomates from those I have spoken to and what I have researched. I took some Loperamide before I went out last night and this really helped once the alcohol started coming through nearer to coming home quite frequently, I think Stacey really enjoyed the “Cheeky V” and Red WKD she wanted to taste it as quick as she could after I had drunk it….either that or she despised it and wanted rid! Haha!

Amount wise, same again, some ostomates can manage quite a bit to drink whereas others cannot manage a lot at all (like me! :D). It again depends on the individual and their circumstances before and after their surgery. I cannot drink a lot compared to some people I go out with, yet I can manage a lot for me if I compare it to before my surgery when I couldn’t even manage a few sips before getting an upset stomach and regretting it for days with my Crohn’s Disease. Considering I’m just over 3 months post-surgery, I think I’m doing really well to be able to drink 3/4 small bottles of mixed vodka drinks atm with some J2O drinks or squash a few times in the night too. I’m a lightweight, but it is funny and I enjoy being giggly and having a great night out, yet I can still remain in control of myself, and more in control in the sense that I don’t have to be running off to the toilet every 5 minutes or sat hunched over with stomach ache! 🙂

Hope everyone is doing well and have a great week!

I’m volunteering at Pre-School ALL DAY tomorrow, so that’ll be very tiring and interesting, but will let you all know how it goes! 🙂

Stoma Support Group

13 Nov

Hi again everyone,

It’s been a few days since I last wrote so I thought I would do another post!

I went to a Stoma Support Group yesterday and found it really informative, was a good afternoon. A lady from SALTS ostomy supplies was there and she talked about their products and accessories, found it really interesting and ordered some samples myself! I got some Freshaire Ostomy Spray, No-Roma Ostomy Deodrant (also helps lubricate the bag to help avoid pancaking) & also ordered some of the Ileostomy One-Piece Drainable Confidence Natural Bags that have Aloe Vera extracts on the flange and adhesive to help skin.

If you want to order any of the products or have a look at the SALTS website, go to: http://www.saltsstomacare.co.uk/products.aspx

And here’s the order codes (‘cos I’m nice like that :p) if you can’t find them on the website for any reason but want them on prescription to try. You can also order samples off the site.

FreshAire Odour Eliminating Spray (Quantity: 50ml) (Order Code: FA1)

No-Roma Ostomy Appliance Deodrant (Quantity: 28ml or 227ml) (Order Code: 833021/833056)

Confidence Natural 1 Piece Drainable Standard Pouch (Quantity: However many you require/usually 28 days worth on prescription = pack size 30 to order) (Order Code: ND25 as my stoma changes between 24/25mm in size) but they are available to order in other sizes (starter hole to cut up to 70mm wide and 55mm deep) precut: 13mm/25mm/28mm/32mm/35mm).

I had a great afternoon at the support meet; saw both the stoma nurses who look after me who are amazing ladies and so helpful, saw one of my good friends who has an ileostomy too and works as a cadet nurse & met some lovely new people! It is always great to meet others, especially those that can empathise, it really helps to open your eyes to how different having a stoma can be for different people! 🙂

Nightmares to do with my ileostomy

6 Nov

So today I’ve been feeling pretty rough, still got my cold, nose seems to be getting better then worse repeatedly, and it’s spread to my chest really bad. Got quite a bit of mucus on my chest it feels like and it just won’t shift. I can’t taste anything or smell, my voice keeps going weird, keep coughing and every time I breathe in and out its like my chest is whistling and all croaky at the same time 😦 Don’t know if I’m on my food or off my food, feel hungry but no matter what I eat it seems to make no difference.

Have slept most of the day and lately I have been having nightmares related to my ileostomy bag which I’ve woken up from feeling totally out of place and a bit sick and weirded out. After my operation I had nightmares in hospital, they were truly horrible. I would dream that I was standing in front of a mirror and all my intestines were hanging out my tummy and that I couldn’t stop being sick, then I woke up being sick in my sleep and in a panic, was truly horrid. One of the doctors said that what we dream is a lot to do with what is on our minds, she is right. I had a bit of a careless accident last night with my bag, which I believe caused the nightmares. I was in a rush and went to empty my bag into the toilet standing up and because there was a lot in the bag and the way I was aiming it I missed the toilet with most of it and got it everywhere, and ended up cleaning it up and bleaching everywhere. Luckily I had a blocked nose as I could smell it a little and it was vile, but I had a nightmare that I was getting it all over in the weirdest of places and having panic attacks and not knowing what to do. Once again, I woke up feeling really upset and sick.

Really want to feel better soon, all I want to do is cry! 😦

 

The effects of a cold!

1 Nov

So here I am with my first cold in about 6 months, think I’ve done pretty well to last without a cold this long 😀

It’s a monster of a cold, I’ll give it that! Had to give in and buy some cold and cough medicine for the first time ever with a cold, but it has sure helped. I “celebrated” Halloween in true walking zombie style looking like death warmed up 😀

I find the cold has affected stacey’s output, it is more frequent and more watery than before and only seems to thicken up slightly with a few loperamide. Stacey has also been quite loud and lively making bubbly noises and passing wind more than I usually notice. I am ensuring I’m having plenty of still fluids, especially the orange Lucozade sport as sports drinks are recommended to help rehydrate the body and give it the electrolytes it needs etc. I haven’t really lost much of my appetite so that’s good. 🙂

Ta ta for now 🙂