Welcome to Molly’s Diary
June 9, 2016
How are you?
The last 6 months have been a big transition for me. I started my first job as a nurse and it has been tough; a steep learning curve! You may wonder about the title of this post – so let me explain.
I am very good at putting a ‘brave face’ on and I don’t like making a fuss or standing out. I began my work with no one knowing about Crohn’s or Neville (stoma) because I didn’t need to tell anyone as I didn’t think it would affect my job.
4 months in and I had a meeting with my manager to discuss my shifts. I mentioned Crohn’s/Neville and she was stunned. She couldn’t believe it. I was pleased I had shown that just because I have a stoma, it doesn’t affect what I can do.
However today I decided I needed to be selfish and think of me. So I plucked up the courage and rang my manager. My current 12.5 hr shifts including night shifts have got all too much and my physical and emotional well-being is starting to be affected. I was shaking which is silly but I don’t like asking for help when I feel they have an already busy workload.
My manager was lovely and I managed to sort a better system of shifts that I feel might help me cope better with an already high-pressured job.
The moral of the story is… be selfish at times. It is your life. We have to fight through so much to live a so-called ‘normal life’ so be kind to you and speak up. It is YOU who has to live your life – make it a good one.
June 8, 2016
Much has happened … not time to tell you all now. But here is a link to an article I wrote about life with a stoma for the colostomy association. Please give it a read to raise awareness! http://www.colostomyassociation.org.uk/index.php?p=139&pp=0&i=389&page=Molly%27s%20story
I’ll write soon xx
December 5, 2015
What a difference 1 year can make!
It is Crohn’s and Colitis awareness week (1st-7th Dec). Obviously raising awareness for these chronic debilitating conditions is very dear to my heart as I have Crohn’s Disease. But it is even more poignant this year as last December I was in hospital in an indescribable amount of pain due to another bowel resection surgery. Not to mention the fact I couldn’t eat for 4 months previous to the surgery. I had to pause my degree course to have several months off to recover.
But I am blooming relieved and proud to say I have just completed my final placement and I have achieved my degree in paediatric nursing. After a long 3 and a bit years, I am now a qualified children’s nurse..!!!!
You may know somebody who has either of these conditions or you may suffer from one of them. Either way – they can be life-altering and a daily struggle but it is days like today when I can look back on my 11 years with Crohn’s and 4 years with a colostomy and proudly say that through all my many operations, pill-popping, excruciating pain and miserable days when I wanted to give up; I am stronger than Crohn’s.
Who knows where Crohn’s will take me in life – that is the unpredictable nature of the condition – but to all fellow sufferers – look at our track record; we are doing pretty darn well.
Crohn’s – 0 Me – 1
October 8, 2015
How are you today? I hope this post finds you all as well as can be and enjoying the (unexpected) late sunny days this year.
I had a lovely break in France with my family – wore my bikini’s with pride! My nieces and nephews loved my decorated bags – they even decorated some themselves!
I am on my final placement before qualifying from University. The finish line is so close – typically the time seems to be dragging even more now that it is so near to the end! It has been tough lately – and I think I have been pushing myself too much and expecting perfection and not being kind to myself.
I had to stop and think.
To remember what I have been through on this roller-coaster of a journey that is Crohn’s disease and living with a colostomy bag. To be proud of what I have achieved despite battling with my health for numerous years. We should all be so proud of ourselves – look at what we are having to live with and yet we are keeping up with people who have perfect health. I have no idea what I am going to do career-wise once I graduate – not long ago I had it all mapped out but recently I have been questioning if I can realistically maintain my health and sanity if I went down that career-path. My goal at the moment is to just finish uni; get the degree that I have battled through despite a major Crohn’s flare and having a bowel resection and my village having major floods during my placements! These last 3 years have certainly been a test!
My message from this post to you all (if anyone reads this haha!), is to be kind to yourself. Realise what an amazing person you are and how strong you are for battling with poor health. I am a perfectionist and sometimes I have to stop and think. To give myself a break. You should too.
As always, do get in contact if you want to share experiences or have a moan! Email – email@example.com
August 11, 2015
As usual lots has changed since I last wrote on here! So I’ll get started then…
The lovely guy who I mentioned in my last entry is no longer on the scene. We had a great few months but I felt the ‘spark’ was fading so we called it quits. But I still stand by what I wrote last time; it was good to open up to him and talk about Neville (stoma), he was fine with my bag and it was a great confidence booster.
What else has changed? Well I have moved out of my university house as I am about to qualify and complete my degree! I now live back at home full-time (which I like) and I am about to complete my last placement and should be finished with uni by Christmas.
My Crohn’s disease is still (touch wood) under control due to Humira injections every 2 weeks and Neville has been (mostly!) well-behaved. Luckily I haven’t had any mishaps at placement – but I have all my supplies ready should anything happen but the loo at work is small and not the best so I hope I never have to do an emergency change…!
Ooh yes I am off to France next week for a holiday in the (hopefully) sun! I have got my 2 bikini’s ready – can’t wait to wear them. I had the option of wearing a tankini or full costume but I feel more confident in a bikini (somehow my curves, not including Nev are more flattered in a bikini!).
Hope you are all as well as can be.
Do contact me if you have any questions or just want to share experiences – firstname.lastname@example.org
May 8, 2015
A quick update on my life with Neville (stoma). I have recently met a lovely guy and I decided it was time to tell him about Nev. Let’s call him ‘Tom’. He knows about my Crohn’s disease – and was not bothered, but then he had never heard of it before.
We had a great date last weekend and I knew it was time… but the question was what was the best way to do it?!
I decided to write it down in a letter form. This way I could structure my thoughts logically and make sure I got my point across well.
So I have spent the last few days jotting down my thoughts and today I decided was the day to send the email to Tom. I was so nervous – I don’t know why though – if he had not been fine with Nev, I would have thought ‘sod you’! Nev is a great filter – he removes people in my life who are not worth getting to know.
Five minutes after sending it – he messages ‘I’ve read it – are you free to FaceTime?’. Aaaaah! My heart was racing. What would he say? What would he think?
After a few pleasantries – I asked what he thought of the email.
He was ok with it all. He was so lovely and kind. He said he likes me and isn’t bothered by Neville. He can see that I am happy and enjoying life so why should it be an issue? He said if I stayed at his house, to let him know if I needed anything to make it ok for me to stay. I was lost for words.
Happy. Is. An. Under-statement.
I feel relieved as I can now be myself completely. Tom was the first guy I have told about Nev since having him so it was a big deal.
Must dash and get ready for my next date with him.
Basically my main message to get across today is – don’t give up hope of finding someone who accepts all your scars, bumps and lumps. I really didn’t think it would happen for me – It may still all go pear-shaped but at least I have gained new confidence in my body and self which will serve me well for the future.
April 22, 2015
Hello to you all!
I hope this post finds you all as well as can be and enjoying the sunny weather! I spent a tad too long in the sun yesterday and have a very rosy face today!
So I have returned to university a couple of weeks ago after recovering from my last operation in December. My tummy healed well – I only have a few scars on my tummy but they are fading. It definitely took it out of me this last operation – my energy was rubbish for a few months. I was able to re-join my course for theory and even though I won’t be able to graduate with them all in September, I will be able to qualify once I have caught up with placement hours lost. So not long to go until I can earn some money and be done with writing essays!
Typical me – I challenged myself last year (before I knew I would need another operation) to face one of my biggest fears – heights. I had to postpone it but I re-booked my skydive for the 1st April this year (no April fool’s joke!). I did it for charity and raised much more than I anticipated! Originally I was going to do a 7000 ft jump but on the day I upgraded to 15,000 ft (the highest you can jump without needing oxygen!). It was truly terrifying but an incredible experience. I have enclosed a photo or two from the day. Neville behaved beautifully on that day – I wore a support band as the straps from the harness were tight but apart from that it was no problemo.
Crohn’s update – (touch wood) all seems well at the moment, I am still on Humira injections every 2 weeks but it’s doing the job. I see my consultant every 6 months – sooner if I need. I can’t believe it has been only 4 months since I had major surgery – not long at all if you think about what they did.
Anyway – I must dash and write/stress over my dissertation! I’ll write soon but do, as always, contact me for a chat or if you have any questions – email@example.com
January 21, 2015
I have just begun a new project – I have created a YouTube channel called ‘Colostomy Diaries’! If you have a chance do take a look – it will include videos on a simple bag change, irrigation, decorating bags and more.
Recovery is going well – 5 weeks post-op and wounds healing nicely and energy levels increasing. I see the surgeon next week for a final review.
Hope you are all as well as can be!
Colostomy Diaries (Here is the link)
January 5, 2015
Happy New Year to you all! Hope it is a good year for us all.
Sooo… an update on my life. I am nearly 3 weeks post-op after going through with my small bowel resection. I had it done via keyhole – they were concerned at one point that it would need to be done through open surgery. I also had my appendix removed while they were there! I am doing ok – first couple of weeks I needed naps during the day and was very sore but this week it is improving and I am walking about to loosen it all up and the pain is gradually settling. I had 4 incision sites – one I would say is borderline open surgery – it is quite long across my tummy button. I had them sealed with glue which is a lot easier than dressing changes etc. I was allowed to eat from day 1 which is great – although I had no appetite until recently but after 4 months or 106 days of no food I am enjoying the taste and textures of food! I have begun irrigation again as I was too sore to try it straight after surgery. Also I re-started Humira injections a couple of days ago as I had to have a break from it before surgery as it can affect the healing process.
New Year’s resolutions – I have tried to choose ones that are achievable as I know if I go for the usual ‘give up sugar’ I won’t stick to it! So mine include – *Do more of what makes me happy – I haven’t had much fun in 2014 so I want to enjoy life more. I have re-booked my charity skydive for April!
*Be more proud and open about my stoma Neville – I felt so confident once I wore a bikini in the summer for the first time since having Nev and I will strive to do more of that – including being a ‘model’ for a stoma event coming up!
It is tough having a stoma – I am not going to lie or say ‘it is all great’. We all know it has it’s hard days/weeks/months but those tough moments make us all fighters and we must be proud of how far we have all come and all that we have achieved despite having to face battles on a daily basis. I love Nev and he has given me my life back but he can be a real little nuisance at times! But I wouldn’t change him 🙂
Hope you all have a great year full of adventures, health and happiness.
As always – do contact me if you would like to share experiences etc – firstname.lastname@example.org is the email.
October 15, 2014
I am one of the most indecisive people you will meet. Yet here I am faced with a big one. I’ll tell you how I have ended up in this situation…
After the last post I started to re-introduce food to my diet – a low residue diet and done so very gradually. I started on breakfast and for the rest of the day had Modulen. That increased to 2 meals a day with just 1 Modulen. 2 weeks in and I start getting pains… They just niggle a bit but I ignore and carry on. The pain settles after a day or two and I have a few days reprieve. Then last Wednesday evening, I feel oddly full after a relatively small light meal and I have a night of tummy aches. I force myself to lectures the next day and the pain gradually increases so I decide to leave uni and drive home early (I was due to go home later that day anyway). That evening at home the pain gets worse, I feel bloated and there are no noises coming from my tummy or Neville. I seriously believe I will be rushing to A+E yet again. However the next morning the pain has eased a bit – it still feels tender and bloated but it is more manageable. I speak to my consultant to get some advice and he says to stay on Modulen for the weekend and he will see me on the Monday. Over the weekend I still have a tender and slightly bloated tummy but everyday it decreases. By Monday it is fine again (typical timing just as I see my consultant!).
My consultant says options are the same as last time – more immuno-suppressants (which I have already tried) but they will leave me even more susceptible to infections plus it would appear my stricture is not inflammatory and mainly due to scarring therefore medication will not help. Another option could be Modulen and another attempt at re-introduction of foods but even more gradually this time. Or surgery. Consultant believes that section of my small intestine is not working properly and most likely will block again with the presence of food.
It is tough – as I did not end up in A + E this time, for some reason I feel it has not reached the surgical intervention stage. However, I must remember how uncomfortable even a partial blockage is and I don’t want to tempt a full blown blockage again. Consultant would prefer surgery to be an elective rather than emergency decision (as we all would). Therefore I am back on Modulen to give me time to talk to Uni about when the so-called ‘ideal’ time would be to miss 3 months (!) without having to retake the whole year.
I was due to do a charity skydive last weekend too – it was also the 3rd birthday of Neville. Ironic really – 3 years since I had major surgery to prevent further problems with my tummy and what am I doing? Oh yes – deciding if I should have more major surgery!
Anyway must go and do more uni work – until I decide what to do!
Hope you are all well
September 16, 2014
Yes – so as the title states, it has not been a relaxing summer for me at all. I am now back at university to begin my 3rd and final year. I will continue from where my last post ended…
A short time after my last post I had 2 days – with a gap of feeling fine in-between – of sudden onset shaking and high temperatures. The first episode began when I was in the cinema with my 2 young nieces and my mum. I began feeling really cold and had restless achy legs. It became so bad that I had to leave halfway through the film and go to the car to put the heating on! I then had a night of high temperatures but by the next day I felt fine. Then 2 days later the exact same thing happened! Luckily I was seeing my consultant that day so he saw me having an episode. My consultant believed it was a reaction to the increased dose of Humira. However blood tests revealed that I did have a infection so we’re not 100% sure what was going on. Anyway I was told to decrease Humira. Then…
I went out for a lunch meal with my friend and that evening at home I had an uncomfortable tummy which became increasingly worse throughout the following day until it got so bad I ended being taken to A+E again by my parents – being sick in the car – great! Typically it had to be a Saturday night so we arrived at 7 p.m. and I was not taken to a ward until 6 a.m.! I was in so much pain and nothing seemed to help until I had I.V. Paracetamol. I had to wait until Monday to see my consultant and he explained that from the X-ray, I had an obstruction due to the same stricture in my Ileum. He said that surgery would have to happen. I then mentally prepared myself and tried to accept that I would be having surgery soon. But…
Then the surgeon came by and he was hesitant to operate until he was sure the Humira had been given long enough to work. After a lot of discussions it was decided by me, that I would go on a liquid diet for a month and give Humira one last month to work. In was done on the agreement with my consultant that I would have surgery if it happened again.
It has now been 4 weeks on the Modulen diet! I am due to see my consultant next week to decide if food can be reintroduced and what the next plan will be. I have had a tough summer as I have either been in hospital or recovering at home not eating. I think I just have to take it week by week, particularly at University. Most students worry that they might not make graduation due to a failed essay but for me, I have at the back of my mind that if my tummy decides to obstruct again or flare-up again, I will have to pull out of my course. If that happens, I will just accept it. ‘Everything happens for a reason’.
Being back at University is tough as all my friends are eating and preparing food around me or planning meals out and I sit there with my milkshake! But it is OK – it could be worse. At least this liquid diet is better than past ones I have been on!
I did manage to have a lovely few days in Devon with my mum, dad and brother. I was swimming in the sea everyday and went coasteering with my brother! It was a lovely break.
Neville (stoma) is being a good boy! One advantage of this diet is that I only have to irrigate every other day as there is less waste to come out. I did have an accident the other week before I began irrigating again. I was in the car with my parents and suddenly Nev was active and it was beginning to seep under the bag..! So a dash into a supermarket to change it became a entire outfit change! New trousers and pants..! Did not feel great after that.
Anyway – I must go and make my ‘food’! Hope you are all well. Any questions or if you just want a chat – email – email@example.com
July 26, 2014
Yes that is correct – my last official summer holidays have begun. Next year I will have joined the grown-up world of not having the lovely 6 week break in the summer as I will still be on placement nearing the end of my degree!
My 2nd year of my nursing degree has dragged and been very tough. Both academically and personally. The workload steps up – I’ve had to juggle numerous essays during 12.5 hour shifts and clinical exams (plus irrigating after a long shift!). (Nursing is NOT an easy degree option!).
Additionally – I have had a tough year with my health – my Crohn’s relapsed in December 2013 and hasn’t really been 100% again since – I’ve had the odd patch where I have had some respite from it but it still impacts on me more than I realise. All those times I blamed Neville for misbehaving – it was Crohn’s creeping back again. About 3 months ago I began Humira injections alongside Azathioprine tablets. It seemed to be working but then about 3 weeks ago I had a relapse. I awoke to very bad pain on the right side of my tummy and it got worse (typically it had to be a Sunday). My parents decided to take me to A+E as the 111 number had not been effective. At first it was assumed to be Appendicitis so I was admitted to hospital with the plan to have surgery to remove my Appendix. However after a CT scan – a long stricture was found in my ascending colon. The plans drastically changed. Saw a general surgeon who told me I needed emergency surgery to remove that section of the bowel and I would have a temporary illeostomy formed – then he handed me the consent forms. I was stunned. We asked for time to just think this through. My parents were amazing (as usual) and insisted on a second opinion. A colorectal surgeon (who was lovely) appeared and calmed me down and reassured me that surgery is not as urgent as first thought – however it might still be needed – but we had time to wait. It was later confirmed that I had an infection within the stricture so I was put on 2 types of I.V. antibiotics to treat the infection. It took time but 4 days later I was discharged. I saw my consultant 2 weeks later for a follow-up – the pain was still there (but less) and I was still tender on the right hand side. The decision was to increase the Humira dose and to have another appointment in 2 weeks to decide what the next step should be – surgery was still mentioned if Humira failed to do a good enough job. Since then (a week later) the pains have eased and the tenderness is much better. Hoping that surgery won’t be needed. I was shocked – as I had believed (maybe naively) that since having Neville (stoma) I would not need any more surgery – but I guess that is the cruel nature of Crohn’s disease!
Sooo… It has been a chaotic few weeks in my life. How are you all? Hopefully enjoying the British sunshine! Photo included is of me grabbing a few moments in the sun! Anyone been watching the Commonwealth games – amazing that some of the lesser known sports are getting recognised.
I am about to become an Aunt for the 4th time – I’m only 22! Can’t wait though!
Do get in touch with any questions or to just have a chat – firstname.lastname@example.org
Have a great summer!
March 20, 2014
I hope this blog finds you all well. Can’t believe it has been 2 months since I have written on here – time has flown. A little update on my life – my village is no longer flooded! I was actually able to drive into the village the other day. It has been flooded since January! It has been a very surreal existence and experience in the village – we had to get the boat in and out. All mail was delivered by boat to the church – which became our social meeting point. It was a real hassle to get anywhere. We will miss it in a strange way too – the village really supported each other.
I have finished my first nursing placement of the second year. It was a long 12 week placement but I really enjoyed it and had settled in and had become part of the team by the end. I got some lovely feedback from the people I was working with too – which is always a lovely bonus. You, well I, never know how I am perceived so to have the opportunity to receive that is great. I am now back at university for a few weeks before the Easter holidays, then soon after that I head off to another placement! Very busy and full on second year! I just want to finish already and be able to actually get stuck into the role.
Neville – oh naughty Neville! I do love him and always will be grateful to him and he is normally a very good boy…but..the last few weeks for no reason he is being active and playing up in the evenings/night. I should have no bag changes until the next irrigation but now have 2 bag changes throughout the night. It is a nuisance and I gave him the benefit of the doubt for a week but now I am getting stressed out! I am irrigating and getting the full amount in but even that doesn’t stop him. Oh well – hopefully in my next blog he will have sorted his life out! But in the great grand scheme of things – I am pretty darn lucky with my health. We all need a moan at times though!
How are you? Have any of you enjoyed some sunny warm weather? Can’t believe this time a week ago I was sunbathing in the garden and actually got a slight tan. The rain is now bucketing it down! Oh the English weather. I am looking forward to going home soon – I have a consultant’s appointment next week to review my medication and to see what my Crohn’s is doing. I came off the steroids but the symptoms were still niggling so I went onto a different steroid alongside Aziathioprine. I am now only on Aziathioprine and the symptoms are a lot better – however still not 100% sorted so it shall be interesting to see what my blood results show. I’ll keep you posted.
Ooh quick question before I go. I am considering starting a support group specifically for young people with Stoma’s either an online version or/and a actual group where we meet in person near to where I live. I think the age group would be between teens – late twenties?? If any people of that age are reading this – would you be interested in either or not really a good idea? Be honest! I just feel that there are limited groups/advice out there that is aimed at this age group. Any way – feedback of what to include/not do etc. would be appreciated!
As always do email me if any questions at – email@example.com
January 15, 2014
I hope this blog finds you all well and enjoying 2014 so far. I welcomed in the new year in a pretty uneventful style – just chilling at home with my family – which was actually lovely to be able to do. I struggled to make any new year resolutions that I would actually stick to. But I did come up with one – a new motto ‘sometimes good enough – is good enough!’. I always stress and try to overachieve and be perfect in everything I do – it is good to try your best but I needed to take a step back and realise that I don’t have to get 100% in every assignment or task. I just want to get through this degree with a good pass – after that no one will care whether it was a 1st or 2:1. Also a little perspective on what is actually important is good. I think anyone who has had a health problem realises that superficial things are not important and as long as you have your health and people who love you around – life is not bad! 🙂
Talking of health – my Crohn’s is back. I had a CT scan which showed inflammation of the Ileum so I am back on the ‘drugs’! Steroids and Aziathioprine. Bit disheartened at the start as I had hoped Infliximab would have continued the remission. But I am relieved that my symptoms are under control again. Long term I don’t know what will happen or what medication I will move on to…but we shall see!
Neville is still behaving (most of the time!). There has been the odd day when he has his own agenda and I just have to play along! I had a bad day at work when he decided to be ‘active’ and it turned into a bit of a debacle and I was glad to leave at the end of the day. Hope it won’t happen again as Irrigation is meant to prevent these moments happening – but I suppose the bowel is unpredictable!
Anyhoo – hope you are all well. As always – if you have any questions or just want someone to chat to who is going through a similar experience please email me – firstname.lastname@example.org.
HAPPY NEW YEAR
October 14, 2013
Wow I am really shocking at writing on here aren’t I?! I’m sorry! How are you?
Well I am now at the start of year 2 of Uni – where did year 1 go?! I still feel just as incapable and lacking in knowledge as I did last year – all I can hope is that by end of year 3 something has sunk in!
It was Neville’s (stoma) birthday on the 12th – he is now 2. I can’t believe it was 2 years ago I was getting to grips with a completely new way of life – I was struggling to adjust and envisage my life with a bag. But I was determined to get my life back and I have. Who would have thought I would be doing a degree in Nursing and living independently. I still have days where I pinch myself in disbelief at what I am doing. Before I could not walk or stand for any length of time as leaking was so horrific. I had no social life. I was shy and unsure. Now I live in a house with course mates who know (and love!) Nev, at Uni managing Nev and irrigation and focusing on a future career. I still feel unsure but I think that will come with time!
On a little less positive note – I think my Crohn’s Disease is returning after nearly a year off medication and nearly 4 years without symptoms. I have tummy aches and mouth ulcers have begun to get painful. Nev is being active every night even with irrigation which is not normal for him. Consultant appointment made for 31st so we shall see… I was hopeful that it would have stayed away after surgery and medication.
Anyway – I have bought a charm bracelet which I will add charms to each year to celebrate Nev’s birthday! 🙂
I hope this blog finds you all in the best health.
Any questions – please get in touch! at email@example.com
May 13, 2013
So sorry that I have been rubbish at writing on here the last few months! My life has basically consisted of work, work and more work with a bit of sleep inbetween! How are you all? Did you enjoy the weekend of sun we had here in the U.K?! I actually managed to get a bit burnt can you believe!
Neville has been good lately – I started my work placement and it consists of long shifts so I had to change the hours I irrigated and it seems to be working out ok. Although I have just had an upset stomach – the first I’ve had with Nev and it was interesting!! I changed to an Ileostomy bag as my skin was sore from the constant changing of my other bags. There was some seepage onto my clothes which was annoying but overall we managed well 🙂 One of the benefits of an upset stomach is that my tummy is flatter than it has been for awhile and probably ever will be 😉
Basically I am ticking along quite nicely at the mo – not much to report. But if any of you have any questions regarding stomas or Crohn’s disease – just get in touch via email – firstname.lastname@example.org 🙂
Hope all is well
February 14, 2013
Hi Everyone 🙂
Happy Valentines day to you all! I am having quite a dull one to be honest! I got a very sweet valentines card from my 6 year old niece and one from my sister 🙂
I went home for a week recently which was really great – technically it was Reading week and I did do work but I had quality family time too. I have been having a really full-on week at uni – lectures from 9 – 4 all day every day and my brain feels like it is going to explode! I just keep focusing on the fact that it is the weekend soon! But I will end up starting my next essay on the weekend – work, work & more work!
I recently heard from a person who reads this blog and I was really pleased that my experience has helped others and I have learnt a lot too from hearing of other’s illness experiences. So please do get in contact and send me an email I would love to hear from you! My email address is – email@example.com
I can’t believe I will be 21 in June! Not long – I feel I should do something big for it but knowing me it won’t happen! Time has flown by when you stop and think about what has happened. This October it will have been 2 years since I had Neville(Stoma) – feels a lot longer as I have done so much since having him in my life 🙂
I have recently ordered a t-shirt that has ‘this is where my ostomy is’ written on it and you get to draw the position of where your stoma is on the top 🙂 It is to raise public awareness and to educate and reduce stigma attached to people with Colostomies or Ileostomies! It was created by an amazing advocate for stomas – her name is Jessica Grossman. She lives in America – I’ll attach the link to her video about the tops – well worth a look! Copy & Paste this into computer – I am rubbish at linking & technology! http://www.youtube.com/watch?v=jqsguzwEh2E
Hope you are all well 🙂 The picture I have attached is of me canoeing recently in the fields by our house – very flooded but great fun! xxxx
January 8, 2013
I am back at University now! I returned on Sunday with the help of my parents as I had far too much luggage! It was sad seeing them go home without me but I couldn’t dwell for too long as I’ve had 2 full days of lectures! I was anxious about sorting Neville out in the morning Irrigation as I had got used to being at home and having the comfort of a nice bathroom with space to sort myself out. Here I have a small ensuite which is also a wet-room so it is cramped but I can make do. I found out on my first day at Uni that the hot water in the taps – to fill up my Irrigation bag – doesn’t come through for ages so I had a mild panic and fetched hot water from the kettle in the kitchen. But then I wondered if I turned on the shower beforehand, whether that would heat the water. Guess what it did! So now – It is fairly fiddly – but I let the shower run for 5 mins before I fill up the bag. I am learning more and more everyday that you have to be inventive and creative when dealing and living with your ostomy! 🙂
What inventive ways have you had to come up with to help deal with your ostomy?
I must dash and start writing my next essay! I hope all who read this are as well as possible and that the New Year is treating you well.
January 1, 2013
HAPPY NEW YEAR to you all!
What new year’s resolutions did you make? I am afraid I completely forgot to make any!
Myself and my parents had a pretty uneventful New Years eve – our village had a powercut so from 2 pm until 8 pm we were without electricity. I take electricity for granted! We were sat in darkness until 8 – I lit a lot of candles but we were planning on watching a film and having a nice meal! But it was alright in the end. We still managed to watch Jools Hollands Hootenanny and see in the New Year.
Neville has been badly behaved lately. I irrigate well in the morning but he still is ‘active’ in th evening/night which is really annoying. I have no idea why he is doing this and I hope he sorts himself out soon as I really don’t need this at uni. I also have a night out planned with some friends who I went to school with, this week and I don’t need this added burden ruining the night!
I am headed back to uni on the 6th 🙁 I am sad actually – I enjoy uni and the course but I have had a great time at home and I am really going to miss my family and home comforts. It is almost like having to leave home for the first time again – I think it will take awhile to settle in but hopefully the next term will be great. One thing I will find hard is irrigating at uni again – I find it quite stressful irrigating in the morning with the fear of the fire alarm going off mid-way through! I am back at uni for 2 months then I am back home to begin my placement at hospital! I hope it will go well – I am looking forward to getting to be hands-on and be in a nursing environment – even though it will be knackering with long and irregular shifts!
Today I have been on a bike ride with my parents – we have major flooding in our village and some of the roads are blocked in and out of the village so it was good fun exploring and cycling through the floods.
Wishing you all a happy new year!
xx MBee and Nev
December 11, 2012
Hello and Merry Christmas to you all 🙂
I am going home in the next few days for christmas! I cannot wait – I am in need of ‘home time’ and quality family time. We have the whole family – brother, sisters, uncle and nieces & nephew all home. I have work to do but it will be great fitting it around christmas moments in my home environment.
I have pretty much sorted housing out for next year now (touch wood!) and it has an ensuite room for me! I am going to be living with two girls from my course which will be good. We will see the house in January to double check it is alright and suits our needs.
What are you all doing for christmas and the new year? What are your new year resolutions and wishes? I will have to start thinking about mine. This time a year ago – I was still recovering from my operation – I was up and about again but still adjusting to getting my life back. My fitness levels were very poor and I struggled with walking a short distance. I didn’t really believe I would get to University this year – but I have and in such a short space of time I have achieved so much. Sure, the things I have achieved might be small and insignificant to others but to me they mean the world to my self-esteem and confidence levels. I am still learning things about the world and daily life that others accomplished years ago. However I have learnt things about the world and what really matters that a lot of other people don’t understand. I think that people who have troubles with their health are generally more mature and appreciative and empathetic than most. At the end of the day – your health is the most important thing.
I wish you all a fantastic christmas with your loved ones and a very happy new year. I hope 2013 is your best year yet.