This year has been filled with highs and lows. I got sick, lived in an amazing house, held our Cleastonbury festival, laughed a lot, cried quite a bit, had my colon removed, got an ileostomy bag, had some big disappointments but also some fantastic highs, I have visited Vietnam and I’m ending the year in Sydney with my big sis!
I’ve faced my biggest challenges this year, two weeks in hospital, IV steroids, moon face, mood swings, pain, fear and the ‘decision’ – I had a subtotal colectomy with an end ileostomy and spent the last four months living with an ileostomy bag.
It has been one of the hardest years of my life, there were times when I felt so low, that life was unfair and that I didnt want to have to deal with all this. But through the support of my friends and family I got through it. I founded this blog as a cathartic way to express my feelings while I was on this rollercoaster ride and was amazed that so many of you read it. Over 30,000 views since I started!!!!
As tough as this year has been, I have come through stronger and with a sense of what I want from life. Im more adventurous and open to change, I want to make the most of every second, Im braver than I thought and stronger than I seem.
I am covered in battle scars that remind me of what I have been through, Im not ashamed of them nor do I feel the need to hide them or cover them up. I wear my ileostomy bag with pride as it is a symbol of wellness for me. Before my operation my life was ruled by the toilet, my quality of life was suffering and I just couldnt see a happy future. Now my bag lets me lead a better life.
Im travelling at the moment, I am been to Vietnam and Im in Australia now. This is something I couldnt dream of doing before as the fear of having a flare up would have ruined it all. In the last 3 weeks I have been swimming, snorkelling, rode a bicycle around a Vietnamese island, travelled over 12,000 miles, hiked through Aussie bush and LIVED.
2013 has made me realise that who you are is not what your life throws at you, but how you choose to deal with it.
http://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.png00samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2013-12-30 22:40:482013-12-30 22:40:482013 – what a year!
In less than two weeks I am setting off with my husband and kids on an awesome adventure. We are going to Vietnam and Australia for six weeks and I can’t wait!!
I had a subtotal colectomy and end ileostomy on 3rd September this year and so it was a concern of how I would deal with travelling with an ostomy but after research and getting organised I am feeling confident that everything will be fine. I thought Id do a bit of a guide to traveling with an ileostomy to get all the advice in one place for other people.
Insurance
Our trip was already booked when I ended up having the surgery but I hadn’t yet sorted our travel insurance. When I looked a couple of weeks after the op I had a shock to find many companies wouldn’t cover me at all and the ones that would were charging around £900-1000. After picking my jaw off the floor I started looking into it and found that the high cost was mainly due to it being less that six weeks since my op. I looked again 7 weeks post op and found an insurance to cover me and the family for £185.00 from Holiday Extras.
Insurance was so important to me, as much as I am feeling great at the minute, I needed to know that should anything happen with my stoma I could get medical help easily and it wouldn’t end up bankrupting me!
You an find a list of recommended travel insurers on the IA Support website.
Supplies
I spoke to my stoma nurse about what I needed to do for supplies and she let me know that I needed to take one and a half to two times as many supplies as I would usually need. Im travelling for 6 weeks so Im taking 90 ileostomy bags plus wipes, disposal bags, barrier wipes and all the other gubbins!
My delivery company and prescription service were absolutely fine with me ordering extra supplies once I had explained my trip. Its worth my peace of mind to take extra supplies so I know I have plenty if needed. The majority is being packed in my hand luggage with a supply in my checked luggage so I know that should all my checked luggage get lost I still have plenty of bags with me.
Please remember that scissors and aerosol sprays are not allowed in hand luggage so pre cut your flanges so you have no issues there. Also any liquids need to be under 100ml and stored in a clear sealed bag to go through customs.
I also packed stickers to cover vents for bathing/swimming, waterproof tape for added security when swimming, a spare belt, stoma paste and stoma donuts. A box each of Dioralyte and Immodium incase of dodgy stomach problems whilst we are away. I packed everything into a carry bag that will fit inside my carry on luggage so if security want to look through, everything is together.
Im also packing my usual ‘handbag kit’ of one pouch, a few wipes and a disposal bag so I don’t have to haul the large bag to the aeroplane toilet. Plus a spare pair of knickers and some jogging bottoms in case of all out bag leakage!
Travel Certificate
You can get a travel certificate from your stoma nurse or from the IA Support by e-mail , or telephone IA free on 0800 0184 724. The certificate says that the bearer has a medical condition that would require them to have a private room if searched and explaining the medical equipment being carried. It is there to give the confidence to the holder when travelling and are able to explain their condition but still keeping it discreet.
Food and drink
When you have an ileostomy you are always at risk of dehydration, add in hot weather, sweating, flying and different food and drinks and it can be a real problem when travelling.
Sports drinks and rehydration solutions (available from pharmacies) will help replace salts lost through diarrhoea and sweating. The impact of tummy upsets caused by unfamiliar foods and foreign water supplies can be exaggerated for people with stomas so it is worth being extra careful with regards to food hygiene and to drink bottled water (remember that ice in drinks will be local tap water!)
As we are going long haul my plan is to have a few days before on a very light and bland diet, plenty of fluids and some Immodium before the flight.
During air travel, you may find that there is increased gas in your pouch for the duration of the flight. To prevent additional gas formation, avoid drinking fizzy drinks or beer during the flight.
Confidence
The biggest thing to take with you on your travels is confidence. I admit to having nerves about being away from my safe home and dealing with my stoma and ileostomy bag, but then I remember that without the bag I could be in the middle of an Ulcerative Colitis flare up, I could be in pain, exhausted and going to the toilet 20 times a day. I can’t even imagine how Id deal with four 12 hour flights with a flare up, the thought of that brings me out in a cold sweat! So whatever nerves I have about traveling with an ostomy, it HAS to be easier that traveling with a flare up!
I am nervous about going on the beach and people reacting negatively to my bag, Im scared about leaking on the plane or during a day out. I am worried about ruining a holiday of a lifetime because of my stoma.
But all these things are my mind working over time. In reality if ANY of these things were to happen I will deal with it! If someone was mean about my bag Im fairly sure I could laugh it off and if not my husband would shout at them. A lot. If I have a leak I am now practiced in dealing with it as is Timm, Im going away with my best mate and he makes EVERYTHING easier! So I am going to put all those worries out of my mind and enjoy the trip of a lifetime!
I hope this has helped any ostomates who are looking to travel, just remember we have faced tougher times than this and come out of it stronger and tougher… Now is the time to enjoy some relaxation and leisure during your holiday! Good luck!
We will be updating a family travel blog whilst we are away so you can keep up with me here.
I will try to pop the odd post on So Bad Ass and will also be on Facebook and Twitter – so keep in touch xxx
http://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.png00samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2013-12-03 11:13:152013-12-03 11:13:15Traveling with an Ostomy
Last week I went for my post surgery check up, it was 10 weeks post op and I was feeling a little nervous. Timm and I went to the Hallamshire to meet with Mr Brown, my consultant. He came into the room, looked at me and said “Mrs Cleasby?!” He looked at his notes and said “3rd September? How are you?” I replied that I felt great. He was genuinely shocked and said I looked a lot better than he would expect someone 10 weeks post colectomy to look, which was a great boost!
He went through my histology which as predicted showed severe ulcerative colitis through my large bowel, but nothing more sinister. We also chatted about a few problems I have had, my hair is falling out by the handful which has been quite alarming, Mr Brown says it is a result of just how poorly I was before the surgery. Im also having a few problems with my joints, especially in my hands, they believe this will go in time and again is a consequence of the ulcerative colitis.
I rocked my gold boots at the hospital – why do I feel the need to dress up for the consultant?
I am feeling great right now, Im pretty much recovered from the surgery and getting used to my ileostomy bag. I have had no leaks for weeks since finding the right bag for me (still using the dan sac nova 1 easifold convex) and I have been swimming, walking, going to the gym and even been to a spa. I was really nervous that the steam room or sauna would cause my bag to just peel off but I had no issues at all!
I had my first communal changing room experience with the bag. As most women know, the communal changing room is a fearful place. There is always someone with a really hairy fanny that has no problem in drying themselves with one leg on the bench, there is always a super skinny woman with pert breasts proclaiming loudly about how terrible she looks in a bikini and the rest of us just trying to dry off and get dressed under a towel without making eye contact with anyone else. Well I was nervous and initially went into the loo to change. I emptied my bag and checked there were no leaks or any problems and then I decided to bite the bullet and change in the communal area. After drying and putting on my underwear I realised I could do with blasting the bag with a hairdryer so my clothes didn’t get damp. And I did it! I think I got a couple of people having a sneaky glance, which didn’t bother me as it was more curiosity than anything else. I helped that I was with my good friend who always boosts my confidence.
Anyway Mr Brown and I talked about how I was getting on with my ileostomy and what my options were to move forward. My options are that I can keep my ileostomy bag permanently – this would require a further surgery to remove my rectum and anus giving me what is known amongst ostomates as “Barbie Butt” as there is nothing left there!!
My second option is to have pouch surgery. Pouch surgery is also known as ileo anal pouch or j pouch surgery. Surgeons will form a pouch from the end section of my small intestine that is then attached to my rectum. Another ostomy will be formed whilst the new pouch heals, then in another surgery that will be removed so I would have no external stoma or bag and I would be able to poo in a ‘normal’ way.
There are pros and cons to both options and my answer to Mr Brown was that I just don’t feel ready to make a decision yet. He is happy with this and gives me 3-5 years to make the decision! After this time my risk of cancer and other problems in my rectum and anus increase and so they like to have a decision by then. I have arranged another appointment in six months time and hope to have made the decision by then.
I really don’t know what to do for the best. Part of me really doesn’t want to have a bag for the rest of my life but I kind of feel like ‘better the devil you know’ – there are quite a few possible side effects of the surgery that don’t sit well with me. I am just so undecided right now that I think it would be silly to try to make such a huge life changing decision right now. Ill look into everything in the next few months and see what I think.
Life is busy at the moment, business is booming and I am planning for our family trip to Vietnam and Australia! We are going for almost 6 weeks to visit my sister and have a bit of an awesome adventure! Ive spent a lot of time researching travel with an ostomy and feel pretty organised and confident that all will be well.
https://www.sobadass.me/wp-content/uploads/2013/10/2b0a798711.jpg1200800samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2013-11-18 11:07:262015-12-05 14:06:09Post Surgery check up – moving forward
When I was in hospital after my surgery I happened upon the hashtag IBD Warrior and seeing and reading other people’s IBD journeys, their struggles and ultimately the way they overcome what is such a shit illness inspired me and gave me the strength to move forward and to blog about my own journey.
So when I had my stoma photo shoot, we also did quite a few other photos with different styles. The last few months have been tough but through it all I have tried to stay strong, keep fighting, be a kick ass woman and an IBD Warrior.
We all have an inner strength, sometimes that strength shows itself through having to fight for your life, sometimes its in a quiet confidence, at other times it is having to speak out for what is right or in being strong enough to just get through bad times one day at a time. Even when we feel weak and defeated, we have within us the ability to adapt, to change and to move forward. Sometimes it is easier to find than others. Sometimes its so hard to find that we have to speak to friends or family and borrow a little bit of their strength till we can remember where our own warrior is hiding.
The next time I feel frightened and like the world is against me Ill look at these shots and remind myself of how far I have come and that I am an IBD warrior. Hear me roar…
http://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.png00samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2013-11-10 12:48:352013-11-10 12:48:35I am an IBD Warrior, hear me roar…
Last night I started with a stomach bug, I felt queasy and then the output from my stoma turned to water. My bag was filling extremely quickly, I was emptying once or twice an hour and I felt awful.
I had a google and thought I’d try some Imodium (loperamide) to deal with the very watery output from my Ileostomy. I went to bed after puking with a hot water bottle and feeling sorry for myself. I had stomach pain and felt awful. I was a little worried that it could be a blockage, but from dr google I realised that even if it were, the best things to do were drink hot drinks, massage my stomach and try different positions to sit and lay.
I woke this morning after a really restless night feeling terrible. Still awful diarrhoea, nausea and stomach pains. But worse than all that was my mood. I just felt so down, like this was a setback in my recovery. I don’t think I’m generally one to feel sorry for myself but today I’ve been such a Debbie Downer…
I hate feeling sick. I’d rather have pain that nausea, that queasy feeling is the thing that drops me to my knees. So today the nausea teamed with tiredness, a leaky bag, soreness and pain has made me a proper mardy arse!
I try to keep chipper through all this but this has knocked me, I’m feeling low and fed up. Tonight we were meant to be having a few friends over, a bonfire, fireworks, good food and sparklers! Instead we had to cancel and Timm had taken the kids to the local bonfire, so I’m sat at home listening to other people’s fireworks feeling pretty sorry for myself.
The plan is Imodium, plenty of fluids and rest. I’m hoping it will be over soon and I’ll be feeling better. Sometimes we need to go to bed with a hot ribena, a hot water bottle and have a little pity party.
And so I’ll do that, and then pick myself up, shake off the grumpiness and smile…
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When surgery became a possibility I did what we all do these days and googled it… THAT was a mistake (seriously don’t google stomas, you’ll give yourself nightmares!!)
Many images are medical, none are particularly flattering, most are terrifying.
Since having my subtotal colectomy and ileostomy I have realised that neither is anywhere near as frightening as I thought they would be. My bag is barely noticeable and my stoma is kind of cute to be honest!
I had two separate emails from women recently, one saying she had a stoma and an ileostomy a few years ago and didn’t leave the house for six months till she had the takedown surgery. And another from a woman due to have surgery who spoke of her fears of being ‘ugly’ and ‘disgusting’. Both emails broke my heart. I feel so sad that this life saving operation has such a bad reputation when it comes to looks and self esteem.
I understand the feelings. When I first had my surgery I was to scared to look at my stoma. The thought of my intestines being on the outside horrified me and from the images I had seen online, I believed my femininity and any form of attractiveness would have been removed along with my diseased bowel.
Since then I have been googling A LOT – I wanted to find some powerful, beautiful images of women with ileostomy or colostomy bags and stomas to share on this blog. I struggled…. There are some model shoots for stoma products that I found cheesy. There are plenty of medical photos and quite a few selfies!
So I decided that as I live with a photographer and Im not really a wallflower that I may as well do a photo shoot to show off my bag and stoma and hopefully to create a series of photos that show femininity, sexuality, creativity and beauty.
I would LOVE your feedback as Im feeling quite nervous about putting these out there… I wanted to show others the true face of stomas and ileostomies. Im obviously not a model, Im a normal size 16 woman with wobbly bits and stretch marks.
I have a stoma and I wear an ileostomy bag but they are such a small part of what I am. I hope this can inspire others who have had or are due to have the surgery. Your body is awesome. This surgery saves lives and that little bit of intestine doesn’t change who you are – be proud, be confident and be amazing.
I can often be forgetful. I once found our house phone in the vegetable drawer of the fridge but today I did some good forgetting.
We went out today to look at new cars, I changed my bag this morning and now Im getting more adept at it, it took just a few minutes. I got dressed in clothes from a wardrobe that I have removed EVERYTHING that doesn’t work with my ileostomy bag and so it was stress free and fast. Then we went out. A few hours later we stopped with the kids for some lunch at McDonalds, I ordered my food and sat and ate…
Then all of a sudden I remembered about my bag. For the first time in almost 8 weeks I had forgotten all about it, I hadn’t thought about it once since I had changed it in the morning! I know this may not sound like much but when you spend so much time thinking about it, cleaning, changing, worrying about leaks, feeling it to see if its full and needs emptying, worrying if others can see it, or even worse smell it, the realisation that it hadn’t crossed my mind for a few hours was amazing!
I have changed bags and Im using Dansac Nova 1 EasiFold Convex (Ref 841-25) and it is amazing, it fits so well and is the only bag that has worked for me. My stoma is quite close to both my belly button and to my scar which makes it very difficult to find a bag that sticks properly to my skin. This bag has a diamond shaped flange that is fabric and so it fits snugly and perfectly around my belly button. The leaks from the other bags were really affecting my confidence and self esteem as well as my sleep! So to finally have a bag that works is life changing.
If you had told me a few weeks ago that I would go out for the day and actually forget that I had a stoma and bag, I would have laughed in your face. Im just so glad that within two months I am able to start having something of a normal life back, that it is so much easier now and that I have my confidence back!
http://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.png00samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2013-10-27 16:28:462013-10-27 16:28:46I forgot about my bag!
I’ve been a bit shy about sharing a photograph of my stoma. It’s a bit like showing someone your bum hole!! But I know how much it helped me to see other people’s stomas before I had my surgery, so here it is!
It may not be pretty but it has changed my life. Because of my stoma I no longer have pain, diarrhoea or bleeding. I am off all medication for the first time in ten years and I’m learning to live a new life!
Last night I got a Facebook message from the lovely Luke Baker from Dead Sons. It was out of the blue and I was a little surprised, but when I read it I cried, then snorted, then laughed, then blushed. A lot. I know Luke, as Timm is involved with Dead Sons but I applaud any man brave enough to email me to tell me Im wrong…
As I have blogged already, I feel that my confidence and self esteem have taken a knock since I had my surgery, I was saying to another friend recently that I worry my bag defines me at the minute and this message made me remember that it doesn’t. It feels all encompassing right now, but it isn’t me. Its just an attachment.
If I ever needed a bit of a confidence boost, it is now. And the following message made me feel so much better and reminded me of my old self…
“Hey Sam!
I always read your blogs and one thing i noticed is that your more recent ones have been way more positive! Thats ace! I hope you’re well and i hope Timm is looking after you! Im glad that it seems your making a rubbishy situation into something really interesting and a focal point for thought!
There was one I read a few weeks back and I meant to message you off the back of it! I just read your one about poo and it reminded me that I had something to say!!! It must have been one when you were feeling pretty rubbish and down and its how you didnt feel yourself and maybe not as attractive.
It struck a bit of a response in me and dragged me away from writing turkish pop songs but it basically got me thinking, I go in to town and see girls my age strutting there stuff, dolled up to the nines, when in absolute honesty, i think… if only they knew. I just want you to know, you knock blocks out of most women Sam! Stoma, no stoma, you’re an absolute babe!
Timm knows that (obviously), and even a group of young’uns who think they can play instruments think that! It just got me thinking is all, how can a woman so full of confidence, attractive and so fun be down about this! When the situation, as crappy as it may seems, that she’s writing about, doesn’t one bit, change who she is!
Anyway, ive said my piece now! Also, I just want you to know, this wasnt written with empathy or feeling sorry… more just like, shes wrong and id like to tell her that shes wrong, cos i think shes fucking ace! xxx”
Our confidence and self esteem come from within, not from the acceptance or compliments of others, but man, when you are feeling shit they sure do help!!
You can buy the single Gasoline by Dead Sons from iTunes here.
https://www.sobadass.me/wp-content/uploads/2013/10/dead-sons-headline1.jpg250640samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2013-10-07 09:37:092015-12-05 14:09:47Ileostomy, self esteem and Dead Sons…
https://www.sobadass.me/wp-content/uploads/2014/01/20140102-2300291.jpg960960samhttp://www.sobadass.me/wp-content/uploads/2015/09/sobadasslogo.pngsam2013-10-05 18:45:292015-12-05 13:45:40Happy World Ostomy Day
