Feeling emotional – Stoma and Ileostomy worries
I am still recovering well, physically my strength is returning though I still feel very tired. Im able to do more now, cooking and cleaning and have developed a terrible nesting instinct! Honestly its like I am 9 months pregnant, I have an urge to rearrange all the rooms, organise and declutter the world! This means my house is now worse than it was before as there are piles and stacks of ‘stuff’ everywhere!
I think now that I am recovering physically that my mind is working overtime and mentally I am struggling. Im over thinking things and at times just feeling really sad. Im sad that my life revolves around this bag. I spend so many hours a day in cleaning, emptying, changing, washing, worrying… I have never been the sort of person who spends hours getting ready so it feels odd to spend so much time on myself.
I spoke to a friend yesterday about the blog and how so many people had told me that it was helping them, and I was worried about posting about the bad days as I wanted it to be about positivity. She told me that she didn’t think my blog was about positivity, it was about honesty. And being honest is talking about the downs as well as the ups. She also reminded me that a blog that was always hyper happy comes across as smug!! So I thought Id write a bit today about how Im feeling.
My sleeping patterns are still all over the place, some nights I sleep well, others the insomnia kicks in and I just can’t sleep at all. Im also getting up once or twice in the night to empty my bag. A friend told me that our minds get into habits and it will take time to break those habits. From June till the end of September I was on Prednisolone and the meds made me be unable to sleep and so for all that time I was taking sleeping tablets. So I know that its going to take time for my mind and body to readjust to sleeping without any drugs in my system.
But in the middle of the night, when everyone else is sleeping and the house is silent, I sit and overthink… These thoughts tend not to be positive ones. I feel sorry for myself, a big pity party in my honour. I sat the other night at 4am weeping at the loss of my ‘normal’ life. Mourning the loss of a life that didn’t involve wearing an ileostomy bag and having to (literally) deal with shit every day. I sat there wishing I could rewind time and go back to before my operation. I cried about how my body looks and feels, that Im weak and tired and that I have the scar and this stoma, this weird looking thing on my stomach that spews waste and I have no control over it. I feel sad that feeling unattractive affects how I feel around my husband. I feel devastated that my kids still avoid cuddling me as they don’t like the stoma and are worried about hurting me. I feel scared that the course of my life has changed so drastically and that it won’t ever be the same again.
When the sun comes up it also lightens my worries, its a lot easier to be upbeat during the day. I talk to Timm a lot and to my friend Caroline, I know I can talk to them openly and honestly and I know that talking helps. The old saying of a problem shared is a problem halved is so true. Im not asking for an answer or a solution to the problems, but saying them out loud makes me feel that I can overcome them and that I have support.
At times when Im not feeling down I can look at things logically, I know that when I want to rewind my life or want my ‘normal’ life back, that actually before the op I was ill. I was so sick, my bowel was ruling my life. I was going to the toilet 10-15 times a day and bleeding constantly. I was one the highest doses of meds and wasn’t responding at all. If I hadn’t had the surgery I believe I would still be in hospital, I would have had to go onto drugs like Infliximab that carry such awful side effects.
I know that this surgery and my annoying little stoma has saved my life, though it is difficult, it has set me on a road to recovery, a road to a new life without pain, without bleeding and without medication. Though I still feel that I spend a lot of time emptying and changing my bags, I have to remind myself that before the surgery I sometimes lost control of my bowels. That was the most humiliating and devastating part of my Ulcerative Colitis. Now I don’t have that worry! Before the surgery I was in pain pretty much all the time, now I have no pain. Before, I was bleeding so much from my bum that at times I had to wear a pad, now I have no bleeding at all.
I have a few friends who are going through really tough times at the minute, all in totally different ways but equally tough. It makes me think about life and the challenges we face during our lives. When I was younger and Id read about someone facing illness or the death of a loved one, I’d think ‘how do they cope?!!’ – I now realise that there isn’t an alternative to ‘coping’ – Coping is just putting one foot in front of the other, taking each day at a time and accepting that sometimes life is shit, things happen that are not fair, that situations feel so huge and overwhelming that all you can do is sit and weep.
Sitting and weeping is a necessary process, we need to express our pain and let out our frustrations. Then we get up, brush ourselves off and keep going. I think it is so important to have people to talk to, this blog is cathartic for me, I feel that writing all my feelings here allows me to release them. Talking is key, whether it is a partner, family, friends or a councillor. I think if we can talk things through and be open about our feelings it really helps. Giving a voice to your worries takes the power away from them. We all know that we can take a concern and make it bigger and badder in our heads than it really is, speaking about them with someone you trust deflates the worry and I swear it will make you feel better!
Its not about ‘getting over’ a tough time, its about learning to live with it and that is what I will do, I will accept the bad days and sometimes Ill sit and weep, but I will keep going and learn to live with my stoma.
Love Sam xx
Four weeks post op
Wow! What a difference a month makes! Four weeks ago today I had my surgery, I had my large bowel removed in a subtotal colectomy and an end ileostomy formed.
Four weeks ago about now I was being taken to the HDU, I was covered in wires, drips and tubes. It was a scary day and a month on I think I’m still a bit in shock that it actually happened.
In the past four weeks there’s been ups and downs, good days and bad. On the good days I’m thankful that I no longer have ulcerative colitis, that Im not on any medication and that my life can begin again. On bad days I feel sorry for myself. I feel angry that this had to happen to me and sad that I have this bloody bag on me all the time.
The weekend was fantastic. Definitely good days. On Saturday my best friends Caroline and Jamie were round and we had a work day planning all the exciting things we are doing in the next year with our arts group Responsible Fishing – it felt great to be getting back to some work and then we ended the evening with food, wine, a fire and a film.
Sunday we went to my mums for dinner, my friends, Aunty and cousins joined us. Mum made her amazing curries and we had a lovely day eating, drinking and laughing. It’s my first curry since the op, so I was terrified it was going to react badly with my stoma. My mum is from Aizawl, near India and so family curry days are a big part of our lives. I can report that my stoma likes beef curry, chicken biryani and dahl!!!
My friend Corinne (aka Motherscuffer) had her baby this weekend which was huge cause for celebration! I haven’t met her newest son Arthur yet but I can’t wait to see him for a squeeze!!!
Yesterday I had trouble with my bag leaking. And then when I was trying to change it, it kept ‘going off’. There’s no muscle in my stoma and so I have no control over when output (poo to you and me) comes out. Yesterday it was bad timing on when I changed it and EVERY time I cleaned up, put on the powder and barrier and then tried to put a bag on it ‘went off’. It was really frustrating and took me 45 minutes ending in me crying and feeling very down.
I didn’t sleep well last night. I’m off the steroids and no longer taking the sleeping tablets. But it was the fear off leaking in bed that kept me up. Timm told me it was fine, to sleep and if anything happened he’d deal with it all. He is fab and not at all squeamish with the whole thing which really helps but every time I was about to drop off, I’d imagine I was leaking and wake up. Very frustrating as I was telling myself to sleep, that it probably wouldn’t lean but if it did, it would be all ok,but my mind just wouldn’t accept that!
I’ve seen my stoma nurse today who is helping me try different bags to get my confidence back up and to get a bag that works for me. The problem is that my stoma is very close to both my belly button and my scar, I also have changes to my skin where the scars are pulling it inwards so I have dips in my stomach.
These things mean that it’s quite awkward to fit the base plate to my skin and that I have to fill the dips with paste. This means that changing my bag is stressful and time consuming. It’s really frustrating and makes me worry about how Ill get on with it in the coming months. I’m worried about working, I run a photography company with Timm and I worry that all the pressure is on him. I just hope things will get easier.
I’m recovering really well though. My wound which is around 6 inches long that 4 weeks ago was opened up and allowed surgeons to have a good rummage around is closed and just looks like a red line with dots around it (the staples marks!) My stoma is healing really well. I’m off ALL meds which just feels amazing!! And I’m starting to get my strength and stamina back.
I still have to take it really easy, one task can mean an hours nap but its great to be back on my feet and to gain back a little independence. I still rely on Timm a lot but its nice to be able to make tea for the kids now and again or to do little things around the house and garden.
We have a few large apple trees in the garden and tonight I was out with Timm collecting all the wind falls. I did have to sit on the ground but it was fab to be getting out and doing. We have soooooo many apples so were planning a lot if apple based dishes and more excitingly cider!!!
My body has healed so well over the past four weeks and I know it’s going to get better each day now. Though I sometimes feel emotional, angry and upset I keep trying to stay positive, be mindful of all the good things in my life and look to the future.
Because four weeks ago I was cured of ulcerative colitis, the disease that rules my life for ten years. And so for that I am truly grateful.
Love Sam xx
Prednisolone – Steroid withdrawals
I am finally off the evil steroids! Hooray!!! I have been on Prednisolone since June this year and have finally managed to taper off them.
But man, Im having a few problems. Mainly in the form of horrible headaches. I just can’t shake them, Im taking pain killers but they don’t want to go. At first I thought I had some sort of bug as Im also having a lot of nausea too. But now Im thinking its steroid withdrawals.
“Steroid withdrawal symptoms can include dizziness, fatigue, intestinal upset, and headaches. These may occur as the body adjusts to the reduction in steroid supplementation and starts making its own steroids. Patients on steroid medications for even a few days can go intowithdrawal when they stop. It important to start and stop the drugs under medical supervision, to limit the symptoms and decrease the chances of serious complications during withdrawal. People stopping high dose medications could develop a medical crisis.
One of the most common symptoms of prednisone withdrawal is a feeling of weakness or severe fatigue. This is because the immune system is weakened. It may also result in body aches and a low grade fever as though a cold were coming on. Joint pain is also common. Also on the list of prednisone withdrawal side effects is depression. This is because withdrawal from the drug causes hormonal changes in the body. Also because of the hormone changes, a woman who comes off of prednisone too quickly may experience side effects concerning her menstrual cycle. It may become temporarily irregular.”
Great! I have been looking forward to coming off the meds so much, and now Im dealing with withdrawals!! On a good note, I sleep really well last (without sleeping tablets!) so Im hoping that the insomnia is on its way out.
Well here’s hoping they are short lived and Ill be back to normal soon.
Love Sam xx
My hospital complaint – an update
Im fuming. So super angry.
You remember the problems I had with one nurse in particular whilst in hospital? You can read about it here and here.
Well the ward manager just called me to let me know he had spoken to the staff concerned and that he hoped I would feel the matter was resolved.
Not so much, it turns out.
The nurse who laughed at me when I lay crying, who offered no help in changing my ileostomy bag or in showering, who wrote on my chart that I wasn’t in as much pain as I was telling her I was and who withheld pain relief, that one… Yeah, her response is that I only ever asked her for a towel so how should she know I needed help in the shower? No remorse, no realisation that she could have done more – its my fault for not asking.
He says that he told her as a SENIOR staff nurse that she should have been aware that a patient who has had major surgery three days prior should get more support and that she could have done more.
He says he showed her my chart and questioned why she didn’t give me more pain relief. I asked her response he said “Well, nothing really”
He says that she “point blank” denies that she laughed at me.
What. The. Actual. Fuck??
I asked if he was ok with this? That his senior staff nurse had lied on a chart and withheld pain relief. (I didn’t sleep at all that night, I sat up crying in pain, asking for pain relief again and again. I was told I couldn’t have anything else till the dr prescribed it the next day. When asked how much pain I was in 0 = none through to 3 = extreme, I was telling her 3, more than 3!!! Agony!!!! The next morning Timm came in and checked my chart, she had been writing 1s and 2s. In the morning when they changed nurses, the new nurse came in to find me crying in pain, she checked my chart and immediately gave me a higher dose of Oramorph and said the doctors had prescribed me a higher dose than Id been given all night and that I could have been having it every two hours)
He says that the nurse has worked there for years and he knows her personally and he has never had another complaint against her so it is her word against mine. He went on to say that *some* patients when they are on a lot of pain relief can be “confused” – he went on to say that of couuuuurse he wasn’t suggesting that *I* was confused but that it does happen. I told him that two other patients on my ward were so appalled by what they heard and saw from this nurse that they gave me their names and phone numbers and said should I complain that they wanted to be able to say what they witnessed. That one patient told me she was trying to reach her mobile phone so that she could film the nurse laughing at me whilst I lay crying and sobbing. That I had been on the phone with my husband as she was laughing at me… That yes, I may have been tired, stressed, in pain and on painkillers but I was not making this up and I had witnesses.
He says that he has spoken to her and none of it will happen again, so do I feel it is resolved?
Is he crack-a-lacking me??
No, I told him, no. This isn’t resolved as the nurse is showing no remorse and is denying she did anything wrong so how can I believe she won’t do it again? If she thinks she did nothing wrong then who else is she doing it to? I said if that is as far as he can go then I will be making a formal compliant. He asked if I would speak to the matron first. I said I wanted to make a formal complaint as I need to know that she won’t treat others like this.
He said that sometimes complaints are valid and sometimes they aren’t and then went on to tell me that a patient had threatened to complain about him today but it was only because that person had “learning difficulties” – WHAT??? Surely these things should be confidential and he shouldn’t be telling me about other patients?!
So there’s my update, Im sorry if it is badly written but Im so ANGRY at them. That they think it can all be brushed under the carpet.
I WILL be making a formal complaint and will take this forward as far as I have to. I need to do it for peace of mind that next time it isn’t my mum, your nannan or Joe Bloggs’ uncle… That it’s not a frightened old lady or a young person who don’t have my voice.
Thank you for reading
Love Sam xx
A day of firsts…
A day of firsts and not all good ones Im afraid.
The day started at 4am when I woke to find my bag had somewhat exploded… Im thinking making it three weeks before having a full blown blast out is good though, yes? Poor old Timm was woken up and helped sort me out and get me in the shower whilst he did a full bed strip and got some washing on. I know this is gross, but it’s life for someone with a stoma so I thought it was important to share. Basically my bag was completely filled with air and so all output was forced out of the sides of the flange (best word ever)… Not a good start to the day.
Anyway this morning my lovely friend Caroline took me into Sheffield for a bit of shopping. Its the first time I have been out without Timm in a month so it was a little nerve racking but lovely, we went to the Forum for brunch and it was just so nice to be out as a ‘normal’ person. We chatted, shopped and were generally just a bit giddy. Ive not had enough giddiness in my life for the past few weeks so it was fantastic to have some time with my friend.
We did have a bit of a laugh when I was explaining to Caroline about ‘phantom rectum’ which is where despite the fact that I have no colon and nothing is connected, I sometimes feel that I need a poo… This is known as a phantom rectum – As I was giggling about the funny name, her response was “Well it does have a ring to it!” Cue hilarity…
Then comes my next first. I went to the loo and realised I had some leakage on my bag, so I came out and used the disabled loo and my radar key for the first time! I also had to do a clean up and put a new flange and bag on in a public toilet! A bit terrifying as so far Im used to taking my time and doing it in my bedroom. But I managed it and was just really glad I had my full pack up of products with me. It really made me realise the importance of being able to use the disabled toilets. I need the space, but more importantly the use of the basin in the cubicle. Also the importance of having a spare set of everything I need to do a change.
I got a travel bag from Fittleworth who are my delivery company for all my ostomy supplies. Its not the most fashionable thing in the world but it keeps everything together and was a lifesaver today. The only thing is that its quite big and so I need a large handbag to fit it in. I have a couple of larger bags but thought it was VERY IMPORTANT that I had another… Right?? I bought this beauty today from one of my favourite shops Within Reason by The Bombay Satchel Company.
Coming home from our few hours out, I could barely keep my eyes open. I can’t believe how exhausted I feel after doing so little. Its a reminder that my body is still mending and healing and though I have more energy now, I really need to make sure I don’t push myself too hard.
So Im off for a nap now to recover from a hard day drinking tea, eating and shopping!!
Love Sam xx
Stoma Art
I found this artwork called ‘The Lovers’ – its the first stoma art I have seen and I love it!
I can’t find who it is by though, so if this is yours then please let me know and Ill add a credit.
Love Sam x
Happiness and Optimism
I am getting a lot of emails from people who read this blog who are going through tough times, whether it be through illness, relationships or just life in general. Firstly thank you to everyone who emails or messages me, the reason I started this blog is that I wanted to help people. I wanted to give a voice to people with IBD or who are living with a stoma. To get people talking and the break the ‘poo taboo’ so it means so much to see that it is doing that. And more!
Though my blog is about life with IBD and a stoma, Im realising that many people who are reading it don’t have either, but are finding strength and inspiration through the topics I talk about. Wow! You have no idea how much that means to me. It makes my blethering into the ether of the internet feel worth it. If I can help one person, I will be the happiest person alive!
So I thought I talk about happiness. Ive said before that I think happiness is a choice. No matter what shit we are going through, no matter how dark our mood, we can all make the choice to be happy. Even if that happiness is one fleeting moment through an otherwise crappy day. I really believe that trying to be positive, looking for the silver lining and opting to smile rather than frown, laugh rather than shout makes us feel better.
Sometimes that is hard. A bereavement, an illness, a divorce… Of course there are times when we feel life is against us. In those dark times, thinking of something positive can feel impossible. And feeling sad is a natural thing, we need to feel sad, to cry, to shout to deal with the situations we go through in life.
Having a moment of happiness, or gratitude, or pleasure does not take away from the gravity of whatever problems you face. But thinking positively and trying to be happy, whether it be the hug from your child, or ten minutes sitting with the sun on your face, or a phone call with a friend, or just a damn fine cup of tea can make you feel better even if it is just for a minute. In being mindful of these moments you can give yourself the choice to be happy.
Plate by MBart Studios
There have been many studies about happiness and optimism, and it has been found that positive emotions can undo the effects of a stressful negative experience. You can read a great article about The benefits of Optimism here.
I think we all need to be a little kinder to ourselves, we say things about ourselves that we would never say of a friend (or even foe!) If when we are feeling down about ourselves we could try just for a moment to think of the positive things about us and say them I think we could be happier. We are very British though and hate to be seen to me immodest, but screw that! What is fantastic about you? Are you kind? Are you a good friend? Are you loyal? Or brave? Or hard working? Do you do the BEST Tina Turner dancing in the world? Are you funny? – Seriously, think about the characteristics that you admire in others and ask yourself if you have them too. If you do, then celebrate that! If you don’t, think about why not.
Think about what makes you happy.
I LOVE having friends round for dinner, a bottle of red wine, the fire blazing, a great dish in the middle of the table that everyone tucks into. Sitting around the table, talking, laughing and being together.
Sitting in the garden with my eyes closed and the sun on my face. Listening to the noises around me and just being.
I really love being curled up with a book. I like to be totally snuggled with a blanket and cushions and just sink into the book.
A cuddle with my children and the smell of their neck.
A date with my husband.
Painting my nails.
A really good nap!
Listening to music. SInging loudly. Dancing wildly.
Walking the dog.
Watching a good film – we have ‘cinema night’ where we all pile on the sofa, lots of blankets – a film on, and lots of goodies to eat.
Think about the things that make you happy. Its not about money, its about the small things you can do that make you feel happy and good. Think of those things and then DO them!
Of course we all have time and money constraints but we can do one thing a day that makes us feel good. Whether it be getting up before everyone else and having a cup of coffee or wearing your favourite pair of shoes. We can do it. But it means making yourself and your happiness a priority.
You are worth it. You deserve to be happy. Make time for it.
So today, my mission for you if you choose to accept it, is to think of one positive thing about yourself and celebrate it. And to do one thing, no matter how small, that makes you happy.
MIne are:
I was told today by someone that I inspired them. I feel really bloody proud of myself for that.
I ventured out into my garden with a cup of coffee and sat in the sun. I had 10 minutes of just being outdoors, alone, in the quiet. Not worrying about things that need to be done. Just sat… And it was heavenly!!!
So go on, get to to it. It would be lovely to know how your mission goes, so please leave a comment.
Love Sam xx
Inspire
The reason I do this blog…
Love Sam xx
