Squirtle being naughty! And reflections

I really miss squirt!

This weekend i have had 5 leaks. I’ve had a few small contained leaks over the past weeks which normally wouldn’t bother me, but with my olen eoumds being so close the thing i loved most about my bags (leaks being contaimed till i could deal with it) is something I worry most.

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Other bags pop off when they leak or pancake making a mess, i always had the confidence and security that if my bag leaked id know early on and be able to sort it with no mess, no dirty clothes. But the bag holding the leak means output getting near an olen wound, something that shouldn’t mix.

So why is squirtle leaking alot more than squirt ever did? He’s a bit smaller, doesnt stick out quite as much, but due to the fast weight loss I have dips and creases, output is finding it way under. I’ve tried seals which made it worse hence this weekend! Im now currently sat using another make of bag as my skin is sore. I’ve sent off for samples of dermacol collars, stoma nurse coming tomorrow .. I hope that once i get this wound sorted squirtle will learn to behave amd i hope to continue to use my microskins, I really dont want to change bags. I’ve been using them 7 years.

I was worried that with all the surgery my co had become dislocated asi cpuld feel the strings low down. With our wedding anniversary this weekend i wanted to sorted just incase…….

Saw gp.. My coil is fine…. But my womb and uterus has fallen back into the space where my colon and rectum used to be, my small bowel must have been continuing to hold it in place, till my most recent surgeries. Retroverted uterus its apparently called. So what does that mean, well some sex positions will be difficult, I hope it doesnt effect sex too much! Pregnancy and especially labour would be very difficult but as i’d been advised earlier pregnancy  would be risky this doesnt phase me, i came to terms a long time ago that I wouldn’t have anymore kids, i have 2 fantastic kids who being enough joy to my life i don’t need another, though when we first married we’d always planned on having 4. The main issue will be getting the coil out in 5 years, then almost impossible to put another in. But that’s 5,years away, i can shelve that and look at options at a later date.

My middle wound is still not healing but the others have. Although im doing a lot more normal stuff like managing to hang out washing, taking my daughter forcsome new clothes, and making my husband his yearly wedding anniversary steak and creamy mushtooms, i still think of the things i can’t do. I work with the most lovely young girl, ive been with her since she was a little girl, I’ve watched her grow in front of me. I planned on being with her till she reached 18, maybe even beyond that! I wonder if that is even a possibility now. I’m due back at world in my other job in September but on what capacity I do not know, that is if they can accommodate me.

But I’m planning on enjoying this wonderful weather and the long summer, as long as squirtle learns to behave!

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update on recovery

when i last wrote a blog post. I was still in hospital recovering. I had been in 5 weeks.

I ended up staying in hospital 7 weeks before finally being released, i then spent a few weeks at home recovering, graduation being able to do more and more. As i write this i have been home a month, it has been a very long month and has felt like trying to climb a mountain but i feel I’ve finally reached the top.

This week i attended church twice, previous weeks just going in the morning wiped me out for the rest of the day! Monday i had workmen at the house all day then had to take my daughter to town for opera rehearsal. Travelling on public transport. I rested tuesdsy during the day as i had my sons parents evening after school. Although it was hard and a lot of walking around it was good, i have been having dizzy spells and feeling weak, but taking my time i managed even if i did worry everyone with how pale i looked! yesterday i spentvthe day on the film set for vera playing a druggie, basically spending most of the day pretending to be unconcious.

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While in hospital i got very upset thinking i wouldn’t be in the next series as i was ill during filming. I watched all the job advertising flash up on my phone, a reminder of another thing my illness had robbed me of. Thankfully they weren’t finnished filming and i felt able to take part. Even of i was beginning to struggle by the end of the day!

So what has happened between my last post and now? After another 2,weeks i was getting very frustrated, so i begged my mr box to let me go home and as always he agreed. In hospital I was put on insulin to control my diabetes but on leaving they decided to try glyclizide tablets instead. They seem to be working.

I was also sent home with a brochure on eating a high fat and protein diet. When i left hospital i still wasnt eating alot though was managing to eat some food. I had lost over 2,stone in the time i was in hospital, most of that was in the first 3 weeks! At home my husband made sure i atleast tried to eat. And over the weeks i began to eat more and eating became less of a chore, gradually eating more variety of food, taking risks. I tried jalepinos, i normally love them, but they caused a lot of pain, so my love of spicy food has been put on hold for a little while till im more healed. Most risks paid off and with each new food i gained confidence. Although still a bit difficult eating is now returning to normal and im not having to force myself, im slowly beginning to enjoy eating again. enjoying a meal on set….

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When i came out of hospital i had nurses come every day to pack my holes and dress my wounds. The middle one is still being troublesome! After a couple of weeks it went to every other day. Then yesterday the nurses spat out there dummy because i went out. After being stuck in hospital for nearly 2,months then a month stuck in the house i wanted to have a day where i felt normal! Well because i could go out that now apparently means I’m all healed and can make appointments for clinic to have  my dressings changed. I received a voicemail saying next available is friday afternoon! So my wounds that bstely last 2 days were going to have to last 4 days, so i thought stuff it and packed and changed the wounds myself!

I know i still have a long way to go. I won’t be back at work till at least September so i am going to just enjoy the summer taking it easy.

“I know my limits, i just sometimes ignore them but I know them!”

And one day i will be back to the Crazy Donna everyone knows, though having learned a valuable lesson, so not thinking I’m invincible and working at hyper speed. I think I’ll still go normally pace like everyone else!! And wont ignore my limits i’ll just bend them a little.

 

RIP squirt, hello squirtle

The 5th may would have been squirts 7 year stomaversary. Unfortunately he left us a week before.

The past 5 weeks i have been on a rollercoaster from hell. I’m writing this from my hospital bed, i have been in hospital for 5 weeks. I am nowhere near the end of this journey but thought would be a good time to write what has led me to here.

There is no need for me to go into what led me into this situation, online is not the place to start analysing all the mistakes, and I’ve been reminded to not beat myself up, but the long and short of it is i thought i was superwoman, I thought I could do the same, even more than a normal person, and didnt learn from my hernia op in november last year. I’m not saying you can’t live a normal life with a stoma but just dont think your invincible like i did!

Saturday 21st april I began getting pains. I thought was just a blockage which ive had many time before and have manged to clear myself. The day continued and wouldn’t budge. I was due to be working that evening. Although I was still in pain i still went in, not wanting to let anyone down, I had went to work with blockages before and Waited till they passed. Like msny other times before I thought it would pass on its own. I finished at 11.30pm by this point I was in agony and couldn’t get a taxi home. Eventually got home about 1am. Early hours of sunday I woke up still in agony and began bringing up bile and poop. I realised I’d had no output for aproximately 15 hours. I rang ambulance and got rushed to hospital. I was alone and scared
I was taken to the emergency Care hospital. A Ct scan showed my bowel had twisted behind my stoma where my hernia had been, strangulating my bowel. I had emergency surgery to untwist my bowel and removed the damaged section and have my stoma reformed. 2 days later was transferred to one of the smaller hospitals to recover.
At this point i was still unable to eat and still being sick, though a small amount of liquid stool was coming from my stoma. They assumed i just had ileus from surgery and it would rectify itself after a few days. I was given ng tube to empy bile from my stomach due to being sick alot. I knew something still wasnt right and begged for tests. A week later my requests were granted. Tests showed the bowel was still twisted and i was transferred back to emergency care where my surgeon took over the case. As i hadnt eaten in nearly 2 weeks being nil by mouth he requested i get a central line in my neck for intravenous tpn feed. This required a surgical procedure to make an incision in my neck.
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The following day i underwent another ct scan then was operated on by my surgeon who moved my stoma to the left side of my body and stitched up the site from where my old stoma was. Squirt was no more, my new stoma was named squirtle. 2,days later transferred back to the smaller hospital, where the care is much better! The emergency hospital just want to patch you up, ship you off, there is very little care, and were not good with managimg pain..
The wound from where squirt was got infected and opened up a little so had to have an open wound to manage. The ng tube was removed and they began introducing food back into my diet.
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I thought i was on the road to recovery. Eating started well but then my bowel shut down and my stoma stopped working. i began bringing up bile again so was returned to nill by mouth and ng tube put back. As they hadn’t weaned me of my tpn i was  only being fed by tpn.
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A week later after me again begging the doctors decided to do more tests. they agreed the bowel should have began to work by this point. Since being admitted i had been in constant pain needing high levels of pain killers. A gastrografin test was done which showed no blockage but showed areas where it struggled to pass showing there was still some problems, a ct scan was also ordered it showed my bowel had twisted again so got transferred back to emergency care for more surgery. Surgery was done the following morning. And due to severity was open surgery. The 2 previous surgeries were lsproscopic with a few inscisions about 10cm long.  I woke up in recovery and was taken to intensive care where I stayed for 4 days before being moved onto the ward. I had a midline inscision from my breasts to my bikini line. I had a straw sticking out at the top and bottom, a type of drain called penbroke drain. Where my belly button used to be was a hole where you could see the straw, the old stomach site had been opened up. The belly button and old stomach site were packed with dressing, being told they’d heal from the inside.
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I found out that my bowel had twisted and done a loop then got stuck within the mesh from the first hernia repair causing adhesions. The part of bowel which had twisted had an abscess and the mesh had became infected. I was told all the mesh had been removed. I was in alot of pain which wasn’t managed very well. I had a pca with morphine.  I spent one day on the ward at before begging to return to the smaller hospital where i knew i would be looked after. My ng tube was removed and i began eating food. I found this really difficult. After not eating for so long and also the fact that the previous week i was fine till i began eating, then bowel twisted, so in my mind i worried if i ate again my bowel would twist again,also everytime I’d tried food in the previous weeks i was sick. Aldo my stomach would crsmp when i ate, the only thing that i could eat with no issues was icepops and ice lollies, my bowels had been manhandled quite a lot so i gathered they were just bruised and needed time.
Not knowing why it twisted didn’t help, plus i had been right everytime up till this point, and drs always wrong so found it difficult to trust. As i began to eat and squirtle began to work i had another panic when my bag began filling with blood and blood clots, it only lasted 20 minutes, the nurses weren’t to concerned as was dark blood and not fresh. Although upto now it hasn’t happened again it still worried me.
Determined to get home, I perservered. My dr said i had to eat my way out. 7 days after surgery the tpn was taken down, leaving me on my own to eat enough to get me through. I was prescribed fortisip drinks to help. Also after 7 days the pca was taken down and i was put onto oxycodone with oxynorm as back up for times between doses when needed. This made the pain bearable. The two open wounds continued to cause problems, as i write i am awaiting on tissue viablitity team to come and look at my wounds.
Squirtle is behaving and I’m slowly recovering, managing a little more each day, and slowly managing to walk around. The catheter is being removed which will mean needing to get up alot more! I am hoping to get home sometime next week. I know i still have a long way to go but I’m an ibd warrior and i won’t give up!

 

 

It has been a while….

Sorry, I got so busy living life!

Though last year things took a downward turn.  After overdoing it at work, and not much support I ended up with a parastomal hernia.  I had it repaired in November 2017, though I still worry it will come back.  I did get a bit cocky thinking I was invincible and was so determined not to let my bag stop me that I didnt take enough precautions.  But that is me as a person.

But apart from that life is great, a pretty normal life.

I will try to check in more often.

 

donna & squirt

 

What makes something go viral?

It has been a while since I posted in this blog, a lot has been going on.

The #getyourbellyout campaign being the highlight.

The campaign took momentum and has raised a lot of money and has done a lot of good. The video is nearing 6000 views and still going, though it is beginning to slow. The amazing team have not stopped though, they are now selling merchandise, and have a competition for a calendar.

We should be proud of that achievement, but this week I read a blog post by jess at uncover ostomy and realised I feel the same as her.

An interview on the BBC, which was hijacked by some ‘expert’to say ibd is caused by junkfood, very quickly this took up speed, all the papers were writing it and soon the lies became viral.

As mentioned the #getyourbellyout campaign gave people the courage to post pictures of there belly’s, including us ostomates.

So a month or so in, a girl in a bikini with an ostomy, a very good looking girl, who said she aspired to be a model, suddenly began appearing everywhere! Her photo went viral, her story went viral.

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Now yes I am mostly happy about this, but it makes me think. All the papers and everyone who shared it began thinking that the campaign was after her picture, and that we got our confidence from her, when in fact it was the other way round!

Some of us ostomates have not been afraid to wear bikinis as shown in the ostomy awareness video from many years ago.

Some of us have been spending nearly every spare moment trying to raise awareness  jess being one of them, a very beautiful model who began the uncover ostomy campaign and spending years dedicated to it. So why didn’t any of her pictures go viral?

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So in the scheme of things is 5000 really that big? I have been doing a few other videos for different causes lately, and as usual sharing the video’s everywhere. Check out my videos, on youtube, meardonna mearvideos.

I noticed my husband sharing ridiculous video’s, when I look at these daft videos the views are in the hundred thousands!! Here is a recent video he posted and yes it is a bit funny but still! and it has had over 85,000 views!

What also annoys me is he never shares my videos unless I twist his arm, yet he shares all of this trash! I am thankful for my many friends who do share my videos, but they never build up that momentum. 

In a world where an overgrown kid gets famous for recording himself playing a stupid xbox game, with hours and hours of total rubbish, and the most annoying laugh in the world, I begin to think something is seriously wrong!

Maybe I’m just having a failure moment but it makes you think.

Why I’m glad my disease was in the serious end of the scale.

20% of UC patients have disease effecting whole of colon, and where it is classed ad serious.  With a lot of those requiring surgery.

The diagnosis of ulcerative colitis justover 6 years ago was a horrific blow, especially as the disease attacked so severely. I went through many times thinking why me and thinking it was a bad thing.

All these years on, i look back and I’m thinking of how much my feelings have changed since then. 
My mum has diverticulitis  and for over a year has been literally begging for surgery, some people will ask why, because such surgery is always a last resort! Though I wish that wasn’t the normal thinking! These diseases, are not pleasant, we all have our limit of what we can tolerate, luckily my mum finally had surgery and is doing really well. And is looking forward to being able to live without worrying about where the toilets are.

I have had many conversations with other ibd’ers over the past few years and also recently, there disease is classed as controlled. Most are on medications which have side effects, and thy still have to live with the symptoms of UC. They wouldn’t be allowed to have surgery as they are looked at as being controlled.

I look at those strong fighters, and am thankful I am not one of the 80%, how the tides have turned.

I wish that surgery isn’t always going to be seen as the last option, as if it is a failure, losing the battle, where it should be seen as winning.
This past week I have been sailing at work, and Out for a hen night which included an all you can eat buffet and Rocky horror theme, when I look back at this week, I would not have been able to do all of this with my colon. So I am grateful.
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#getyourbellyoutcampaign

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A Group of IBD’ers decided after the no make-up selfies, to start there own campaign.  I’m going to be totally honest, as always 🙂

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On the one hand I’m a little upset that even after all there amazing hard work it did not get anything like the coverage that the no make-up selfies got!  That was all over the tv! But then IBD isn’t Cancer, it’s no like IBD is serious and people don’t die of it do they????   I hope you know that was sarcasm!!!!!!!

As soon as I heard about it I jumped in, taking my belly pic and nominating friends,

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I was deeply dissapointed when a fellow IBD’er/ostomate, messaged me demanding me to remove it and to un-nominate her as she wanted nothing to do with it all.

It made me feel sad that all the hard work of many great IBD’ers, to remove the stigma, hadn’t really worked, have we really gotten anywhere???

After I pulled myself out of that downer, and after finishing loads of wedding video’s, I thought I would make a positive contribution by offering my services to make a video.  

As the campaign took hold, many many people took part, over £3000 was raised for crohns and colitis uk, The video was launched last night and over 300 views already!!!!!!

So to end on a positive I am happy and proud!!!!!!!!  It goes to show what can be done when people band together, as a community we are strong!!!!

It also gave me more of a kick up my barbie backside to continue to keep fighting!!!!!!!

I’m a happy barbie girl 🙂

On a side note, My mum had surgery yesterday, she now has a colostomy, so there is now 3 baggies in our family!

I just hope her little friend, who we have not named yet, is as well behaved as squirt is!