As promised my tribute to Mr Matthew J Helders III…
I have been having some soreness to my skin underneath where my bag fits. I spoke to the stoma nurse who said that it was common as when you are removing the wafer and bag, you peel carefully from the top and then once you are past the hole, you tend to rip it off quickly.
I thought this was what was happening so I made sure I was doing it carefully but unfortunately despite this, my skin was getting more sore.
This morning when I changed my bag my skin underneath was bleeding and so sore. I have been avoiding mirrors but I looked at myself and saw that the shape of the soreness was oval. My wafer is round…
I suddenly realised that when I was taught to put my bags on and off, I was laid in bed. So now I always put them on whilst I’m laid down. Then when I stand, my skin is pulling downwards (the joy of having had three kids!!!) and the wafer is trying to keep it pulled upwards so its tearing at my skin and making it really sore!
I stood at my dressing table and put my bag on whilst stood up. I can’t believe the difference! You can see that whilst stood my wafer should stick a good centimetre or so higher than where it has been sticking when I put it on laid down!
I’m hoping this is going to help with the skin soreness and also with the very slight leaking I have been experiencing.
I thought it was worth posting for other people with ostomies as its been a revelation to me!
Love Sam xx
Today has been a bit of a write off, after last nights abysmal sleep I spent the day feeling exhausted, emotional and just a bit crap. There is no rhyme or reason to my emotions at the minute, sometimes Im feeling fantastic, really positive and raring to go, at other times I am feeling low, Im teary and finding things tough.
Today I am feeling very down. I look in the mirror and see my scar and the bag and I feel so unattractive.
Before the surgery I was kind of upbeat and didn’t think I would feel bad about my appearance, I think after being ill for so long, vanity was the last thing on my mind. But now the dust has settled and life is going on, it feels like an issue. Im very conscious of smell – I worry that I smell of poo. Timm tells me in all honesty that I don’t, and logically I know I don’t, the bags have filters and the output actually doesn’t smell like poo anyway! I think its just that I am aware that I have waste sat in a pouch on my stomach and the fear of it sets in.
At times when Im feeling down, I can’t imagine how Timm can bare to be near me. Surely it must put him off? He can’t really want to hug me or lay next to me in bed? With my gurgling stomach and bag of poo, why would he want to put his arm round me? These feelings are tough. My eyes are filling with tears now because those thoughts make me feel like Ive been punched in the gut.
Its hard to look in the mirror at the minute, Im both intrigued and disgusted by my new body. Having to clean my skin and stoma means touching it and being aware of changes to my skin, but there are times when Id love to just cover it all up and not look at it, empty it, clean it. There are times when I just want to stick my head in the ground and pretend its not there.
I worry Timm will not find me attractive any more, after all, if I don’t then how could he? We had a chat today after I cried a LOT. He is a wonderful fella you know, he tells me that this will never affect our relationship, that he loves me and everything will be ok. He says all the right things and he makes it better.
The kids are honest. Im glad of that but its still hard. They tell me its ‘weird’ and that they don’t like seeing my stoma, they say that it upsets them and avert their eyes if they are with me when I don’t have my bag on. We have always talked openly and honestly with the kids and the same goes with my surgery. Its been a tough few weeks for them and Im so proud of their resilience and courage. I can’t imagine how scary it is for a child to know their mum is having an operation and I was away from them for two weeks! But I do feel sad, I feel like the bag is a barrier between us, they don’t like it and so they’re not as likely to sit on my knee or cuddle me and that is hard. But I won’t push them, they need to deal with it in their own way at their own pace. Im sure as time goes on, they will get used to it and it will just become normal. Its such early days so I am sure things will get better.
Things WILL get better, I know that. I will get used to my bag and it will become more normal for us all. I keep threatening to do a quote a day on my bag a la Matt Helders (Arctic Monkeys) drum skins…
Im thinking if I have to wear this bloody thing, then I may as well rock the shit out of it! Im trying to think positively by looking at how I can still feel like me through all of this so Im looking at clothes that will work better with a bag, ostomy covers and even some nice underwear and swimwear.
I struggled with whether to post this today. I do not want to come across as needy or whingy. Or as one of those girls who say ‘oh Im ugly’ so that others say ‘noooo you are SO pretty’ – you know the type! That’s not what this is about. Anyone who knows me, knows Im a fairly confident person. But I thought it was important to chart the negative feelings that come about with having this surgery. For others who are going through this to know that there are other people who are feeling that their confidence has taken a bit of a thrashing.
I refuse for this to be an entirely self pitying post, so thinking of the positives…
It was our son Charlie’s 13th birthday party yesterday, Timm planned it all and made him a BMO cake from Adventure Time and it was fab, he just had some friends over to watch a film, Timm set up the projector in the living room so it was like a cinema and made a ton of pizzas and popcorn. A lot of Charlie’s friends are budding musicians so they brought their guitars and all had a bit of jamming session. It was a lovely night made better by the fact that Charlie said we weren’t an embarrassment to him… High praise from a teenager!
Timm and I are continuing to plan for our trip to Vietnam and Australia in December – Im so excited. I can’t wait for us all as a family to experience so many new things and it will have been 14 months since I saw my sister and her family so it will be fantastic for us to be together again. The fact that I don’t have to worry about a flare up just makes it all so much better. I joined the Ileostomy and Internal Pouch support group and have been looking on the forums for travel advice. I got a Travel Certificate which explains to airport security that I have an ileostomy, you can get one either from your stoma nurse or the IA using the link above.
Just three more days till I am off the steroids! Woohoo!! I am hoping that once I have finished the steroids that problems such as insomnia and mode swings will stop too. There’s a good possibility that my down mood today has been magnified by the meds, so thinking of being steroid free is a real positive thing for me to look forward to, I have been on them now for almost three months.
Im sorry that todays post is a bit of a pity party. My negative feelings today have been really overwhelming, I have cried a lot and just felt really sad. I haven’t been out of my pyjamas and barely made it out of bed. But I know that there will be good days as well as bad and as rubbish as today has been, I have got through it and tomorrow will be a better day!
Thanks for reading, please feel free to keep sharing the blog with anyone you think it could help.
Love Sam xx
Awwwwwww man!!! This post comes to you at 4.30am and it serves me right for blogging yesterday that I thought my insomnia days were over!!
Went to bed quite early at 11pm and managed to get off to sleep. Woke at 2am – emptied bag.
Slept for an hour.
Been up since 3am.
Feel exhausted but can’t sleep again.
I hate insomnia.
Love Sam xx
One of the medications for Ulcerative Colitis are steroids, I was put on a course of Prednisolone in June this year. I started at 40mg a day and this did cause my flare up to go into remission. The problem is that when you put these steroids into your body, your body stops producing them itself so you can’t just stop taking them. You have to taper them down by reducing your intake over the course of weeks or months.
I was tapering at 5mg a week. But unfortunately once I got to 10mg, I started to flare up again so my dose was increased again. This time the steroids didn’t affect my flare up, it just got worse.
This was the point that I ended up in hospital on high dose IV steroids. I had these for 6 days and they didn’t help at all. I actually got worse while I was in hospital – I was going to the toilet 12-15 times a day and losing so much blood. And that’s why the decision for surgery came about.
Annnnnnyway, the same thing needed to happen with the tapering from the IV steroids, so since I left hospital I have still had to take prednisolone. They put me on a fast taper of dropping 5mg every three days. I’m down to 10mg and will be off them totally in four days time!!
The whole time I have been on steroids I have had insomnia. Deep unrelenting insomnia. Since the end of June I haven’t slept a full night and have taken sleeping tablets pretty much every night. Insomnia is soul destroying, the tiredness without the ability to fall to sleep is tough!!
I also have to take calcium twice a day as steroids can cause osteoporosis, and since my surgery I have to take lanzoprosol for the course of the steroids.
So in four days I will drop four meds! I am already off ALL my Ulcerative Colitis meds. Unless you have to take regular meds you’ll have no idea how emotional it can feel. I despise the fact that, for ten years, I have had to take numerous daily drugs to make me function as a normal human being. In four days, the only medication I will be taking is paracetamol and codeine for pain relief. And as Im recovering I will be slowly taking less and less of those too. Im so happy about coming off the meds I could weep. The surgery has been such a huge thing, but the light at the end of this tunnel is that because I had my large bowel removed, I no longer have Ulcerative Colitis. Im cured. I just don’t have it any more. How cool is that???
If you want to know why Im so happy to get off the steroids, just take a peek at this list of side effects…
As I have dropped down now to the lower doses of the pred, it seems that the side effects are waning too. Last night I said something to Timm I haven’t said in months – “Im dropping off, Im going to bed” – I still had to take a sleeping tablet but I went to bed at 11.30 and fell straight to sleep. I got up around 5am to empty my bag, but then went back to sleep till 9.30am. The last couple of days I have actually woke up feeling rested in the morning.
Now, I don’t know whether its to do with the meds or because I have been doing a little more but I feel sooooooo tired today. Really exhausted. I know I need to just take it as a cue from my body to slow down. Its a weird feeling after months of insomnia and sleeplessness that all I want to do is nap. I feel like a switch has turned in my head, I feel less manic and less hyper. I feel like everything has just slowed down a little.
Today is my son Charlie’s 13th birthday party, he is having a few friends over for pizza and movie night. Timm has taken over completely and has organised everything! So I am going to spend the day napping, reading magazines and generally relaxing and then this evening Im going to hide in my bedroom with Thom and Ellie, my younger kids away from the teenagers!!
And now, Im off to nap…
Love Sam xx
Its been 17 days since my surgery and Im healing well. My wound is closed and I have no pain in it, the scar is about 6 inches long and as it was stapled together I have the line and dots of a staple scar. A friend told me that after she had surgery, her doctor told her to use any sort of natural
oil, grape seed, olive etc – that you didn’t need posh bio oils or other ‘scar healing’ lotions or potions, and to massage her scar for 10 minutes a day. The motion of massage encourages healing in the scar, it improves blood circulation and increases the collagen. She showed me her scars and they were thin white lines, barely visible. So I have taken this advice and I hope it will help mine too.
My stoma nurse visited today, she is fantastic and answered a few questions I had. I have some soreness to my skin where the ileostomy bag sticks to my skin right at the bottom, she advised that I am carefully peeling off the top of the bag when I remove it, and then pulling it off quickly at the bottom. And yep! She was totally right, that’s what i have been doing! The enemy of anyone with a stoma is sore skin. Sore skin can become open wounds very quickly, open wounds are wet and you cannot stick a bag onto wet skin. So good skin care is vital.
Im less weepy than yesterday, I think part of my problem is that I am still tapering off the steroids and they are notorious for affecting moods and emotions. Today feels more positive but I am struggling with one thing. Patience.
Im not the most patient of people at the best of times. I can’t leave christmas presents under the tree without a good squeeze. If I hear that someone is planning something as a surprise Ill pick at them trying to get clues!
Physically I am healing well. I am still taking painkillers regularly but everything is going to plan. Im well on the road to recovery. Im doing slightly more each day, this week I had the trip shopping and last night we went out to dinner for my son’s birthday. But I feel it when I do more, I tire very quickly and feel the pain more. When I lay down at night, I ache. Im walking well now and working on my posture as I have been stooped for weeks in protection of my stomach.
But now I can do more, it is very difficult to have patience with my body. I know I have to take it really slowly, that doing too much will hinder my overall recovery and could cause problems but Im struggling!! Timm won’t let me lift a finger, he’s still doing all the cooking, cleaning, school runs plus running our business so I feel bad in not being able to help him. He tells me off and just wants me to have the proper rest and recovery. Its nice to be looked after but quite difficult to accept. Im so used to doing everything for myself so it takes a big shift in mindset to look after myself first and allow others to help.
So I try to be patient. I know I need to put trust in my body and give it time to heal and get used to the huge changes that have been made to it. Im grateful and happy that it is doing this so well! I have had no complications and everything is healing well. My stoma is functioning really well and the pain is lessening. I find that the time between painkillers is lengthening slightly. Im not watching the clock to see when I can have more which is an improvement! The body is a bloody clever thing and mine is doing a great job.
I want to get back to work as soon as I can. I run our family photography business with Timm (go check us out – The Picture Foundry) and also work with arts group Responsible Fishing and we have really exciting projects coming up, so Im looking forward to getting back in the saddle. Weirdly, I also want to do some house work – I can’t even believe Im saying that!!! Timm is doing a great job, but you know what its like, no one can do things just as you do (nor do I expect them to!!)
I really want to walk our dog Lola. I want to do some gardening. I want to sand down the piano and paint it. I want to go to the pub with friends. I want to sort out my whole wardrobe. And make all the craft projects I ever put on pinterest. I want to go pick all the apples on the trees in the garden. I want to go on a bike ride. I want to be well enough to be at my friend Corinnes birth. I really want that. I want to drive. I want to visit friends.
Patience. It’s a virtue right?
I will be patient. I have to be because I need to allow myself to heal and not do anything that could set me back.
So Im doing nice things whilst I recover. I watch a lot of films on netflix, Im watching a lot of TED talks (TED is a nonprofit devoted to Ideas Worth Spreading. It started out in 1984 as a conference bringing together people from three worlds: Technology, Entertainment, Design) I watch a lot of documentaries. I thought if Im sat in front of the box I can at least be learning new stuff!!
I am knitting. Im a crap knitter, I can knit squares. So Im knitting a LOT of squares that will eventually be sewn together to make a blanket.
Im reading. Im a big reader anyway but my concentration levels have been really low for a while, its nice now to be able to read more than one sentence (over and over again!) I was bought a book called The House of Leaves over ten years ago and got a third of the way through it before giving up. Its a very difficult read requiring you to flip back and forward and read things out of sync. My good friend James has just started it and has inspired me to try again with it… If you fancy reading it you can get it on Amazon.
Im blogging. Obviously as you are reading. It feels good to blog, its very cathartic for me and I can’t believe how many people are reading! Since I started in July Ive had over 10,000 views of this site – bloody hell chaps!!! Thank you!! From the bottom of my heart thank you for reading and commenting. Thank you.
Im planning our trip to Australia!!! This is a fab one. We are going to Australia via Vietnam to visit my sister, brother in law and niece in December this year, its the most exciting thing!! I was so worried about the trip before my surgery, nervous that I would have a flare up and ruin the trip, that we wouldn’t be able to do the things we wanted to do as I would be ill and need to be close to a loo. So now I have the bag, its exciting!!! There is no reason I can’t do anything everyone else can do. The only thing I need to think about it making sure I take enough bags and products that I need.
I meditate. Now don’t laugh!!! Im not ommmmming away in a corner, but I am spending ten minutes to sit and close my eyes, relax and partake in a bit of mindfulness. Its ten minutes of quiet. Ten minutes of feeling myself grounded, concentrating on my breathing and clearing my mind of everything. It makes me feel centred and calm. So don’t mock – try it… You might like it.
And I try to be patient.
Love Sam xx
Today I need to remind myself of this.
I woke feeling unsettled, I didn’t sleep well again. Im still tapering off the steroids so have awful insomnia, Im still on the sleeping tablets that I have been on since June.
Its my son’s birthday today, so we got up early and Timm made birthday pancakes. Charlie opened his presents and we had a lovely morning together.
Timm took all the kids to school and I was changing my bag. My mind wasn’t quite on the job and I left the dry wipes on one side of the bedroom whilst I took off my bag, Timm came in just in time to get the wipes and crisis was averted. Such a non event. But it hit me hard and I had a big cry.
Such a silly thing. Nothing at all really!
Ive been so good at keeping positive and then one distracted decision makes me weep?! Blimey!
So Im reminding myself now. Be kind to yourself.
Im being kind to myself by chilling out today, I have surrounded myself on the sofa with cook books as I feel like baking as soon as Im up to it. I have my knitting out (Im knitting the only thing I can, squares, that will be eventually sewn into one huge blanket) I have blankets on and the fire is lit. For lunch Im going comfort food all the way with cheese toasties and soup. Im going to put on gorgeous expensive hand cream, a present from my lovely friends. Im going to paint my nails. Im going to drink hot ribena.
Tonight we are going for a family meal for Charlie’s birthday. I kind of did a bit too much yesterday in going out and feel exhausted and have some pain so its really important that I relax today so this evening goes off without a hitch!
As you are reading this now, I want you to remember how important it is to be kind to yourself.
Do one thing today to be kind to yourself, no matter how small…
Im not kidding… Go do it now!
Love Sam xx
I thought Id do a post about diet, as it’s one of the questions I get asked a lot… What can you eat?
In the long term, Im advised that I’ll be able to eat what I like within reason. That I will find my way with foods that agree with me and foods that don’t. The ones that don’t will be things that cause excess gas, blockages and stomach pain.
In the short term I have been advised to keep a very low fibre diet. All the things I *think* are good for my body seem to not be right now. The doctors say its a good idea to eat a low-fibre diet for the first few months after your operation. This is because the surgery causes your bowels to swell, making digesting fibre difficult. Once the swelling has subsided (usually after eight weeks) you can resume a normal diet. It is advised to avoid any foods that may cause stoma obstruction including fibrous meats, vegetables like corn, cabbage, celery, green peppers and peas; and fruit skins and seeds, nuts, dried fruits and popcorn.
The following foods are generally allowed on a low-fiber diet:
- Enriched white bread or rolls without seeds
- White rice, plain white pasta, noodles and macaroni
- Refined cereals such as Cream of Wheat
- Pancakes or waffles made from white refined flour
- Most canned or cooked fruits without skins, seeds or membranes
- Fruit and vegetable juice with little or no pulp, fruit-flavored drinks and flavored waters
- Canned or well-cooked vegetables without seeds, hulls or skins, such as carrots, potatoes and tomatoes
- Tender meat, poultry and fish
- Creamy peanut butter — up to 2 tablespoons a day
- Milk and foods made from milk, such as yogurt, pudding, ice cream, cheeses and sour cream — up to 2 cups a day, including any used in cooking
- Butter, margarine, oils and salad dressings without seeds
- Desserts with no whole grains, seeds, nuts, raisins or coconut
On a low fibre diet you should avoid the following foods:
- Whole-wheat or whole-grain breads, cereals and pasta
- Brown or wild rice and other whole grains such as oats, kasha, barley, quinoa
- Dried fruits and prune juice
- Raw fruit, including those with seeds, skin or membranes, such as berries
- Raw or undercooked vegetables, including corn
- Dried beans, peas and lentils
- Seeds and nuts, and foods containing them
One of the biggies with an ileostomy is keeping hydrated. The large bowel takes liquid out of our foods, so in removing it, you remove a good chunk of the water our bodies need. I have found that Im constantly thirsty and Im drinking pints and pints of squash. I find water just goes straight through me, but adding the squash keeps it in longer. High outputs from an internal pouch or stoma run a real risk of dehydration due to water and salt losses. Aim for at least 8-10 cups of fluid per day, and increase this if losses are high.
If you have diarrhoea you need to ensure you are replacing both the fluids and the salts. Over the counter remedies should be kept to hand or you can make an electrolyte mix. I found this recipe online…
Sodium Chloride 31⁄2g
Sodium Bicarbonate 21⁄2g
Made up to one litre with tap water
You can buy the powders from any pharmacy and some supermarkets. Sodium Chloride is table salt which you may have in your home already. Sodium Bicarbonate is also known as Bicarbonate of Soda.
A good tip from my stoma nurse for dehydration is to keep some ready salted crisps in the house. If you have a high output and are worrying about being dehydrated a packet of crisps and a sweet drink can be an instant help till you can get some Dialryte or Electrolyte mix!
Just been reminded by my sister in law of another tip! Apparently if you have diarrhoea, you can help ‘stop up’ your output by eating 30 marshmallows!! That was in the info book they gave me in hospital – I don’t know why I find it so funny but I do…
Another problem is salt. The bowel takes the salt we need from our food, so in the first few weeks you can safely add a bit more salt to your food to ensure you are getting enough.
As always, if you are reading this and looking for advice, the best place to go is your own doctor or stoma nurse. The information here is what I have gleaned from my health professionals and the wonder of the tinternet!
Love Sam xx
Tomorrow my eldest son becomes a teenager!!! Surely I’m not old enough for this? I still feel like a teen myself never mind mother of a teen!
So today we needed to go shopping for his birthday presents, everything is last minute because of the manic last three weeks. Timm was happy to go alone to get everything but as I’m feeling stronger each day I thought today could be the day to get out of the house!
It felt so good to dry and straighten my hair for the first time in three weeks. I had it cut by a lovely local mobile hairdresser last night so I immediately felt better. My hair has been scraped up in a bun and gripped back for weeks, totally neglected and due to meds and surgery was feeling dry, brittle and was snapping off on the ends.
I put on some make up and then faced my wardrobe…
I’ve been worrying quite a bit about clothes. I’m just not sure what to wear, trousers need to go under or allllll the way over my stoma and bag. Underneath is fine but then tops need to be long enough to cover the bag. Tight tops like vests would be perfect but they all seem a little short. Long tops or dresses cover the bag but then I feel like its kind of swinging freely which doesn’t fill me with confidence.
My mum suggested getting some if those over the bump maternity trousers. At first the thought of having to wear maternity clothes depressed the life out of me. But the more I thought about it, the more sense it made.
So today I wore I pair of high waisted, wide legged trousers. They were just the right height on my waist and kept everything tucked tight against my stomach. And a black vest with a stripy cardi. It felt great to be back in ‘real’ clothes. I felt more like myself today.
Ileostomy bag wise – I’m currently using a two piece system. I chose the midi bag today over the maxi that I’ve been wearing since the op. I do have some mini but I worried about how often I’d have to empty that so went down the middle. If anyone has questions about the bags, please feel free to ask. Ill do a post about them soon.
So off to Meadowhall we went!
I was really nervous, I was worried my bag would leak and generally just worried about being out in public! I worried Id be knocked into or maybe I’d fall. It’s an odd sensation to be out somewhere so busy after spending so much time in hospital or at home. Timm was with me and made sure I took it slowly and best of all, he carried all the bags!!
I took a spare kit with everything Id need to change the whole bag plus a set of clothes just in case. It made me realise that I would feel a lot more confident if I knew I could use the disabled loos. Partly for the space and partly as they have a basin in the cubicle so if there were any issues I could deal with it all in private. Definitely need to get one of the disabled loo keys…
We went for lunch at Eds American Diner, the food was great and if you go to their site and sign up to their club, you can get a free burger and then we got Charlie’s birthday pressies.
We then went to H&M where I bought two pairs of maternity jeans. They are perfect!! The waist band sits on my hips under the stoma but the elasticated top goes over the stoma and bag holding it close against my body. I’m not necessarily trying to hide the bag but trying to make it both comfortable and allow myself to feel confident. When it’s held against my body it feels safe. When it feels safe, I feel a lot more confident!!
Also got a new pair of boots because… well I think I deserve them!
All in all its been a great day with a big move forward. Im tired out tonight but it was all worth it.
Love Sam xx