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
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
Here’s a fab video explaining how your digestive system works and an explanation of colostomy, ileostomy and urostomy by Ostomy Lifestyle.
For more information, take a look at Ostomy Lifestyle.
Today I wore clothes for the first time in almost three weeks!
Three weeks of jamas!!!!
And to make me feel better I just had to wear the sequinned knickers…
You can see the top of my scar here now the staples are out. It’s pretty big but scars are cool, right?!
My bag is HUGE, they give you the biggest easiest ones to learn how to deal with them in the early days. I’ve seen the ones I could move onto and they look tons better, easier to disguise, easier to fit under clothes.
And sometimes you just need to wear sequinned knickers…
Love Sam xx
After chatting with my mum, I realised that as I natter away about my surgery, that it can be quite confusing as to what I have had done, so with the help of google I thought I would do a little post about the surgery.
I had a subtotal colectomy and end ileostomy. This is an operation to remove the colon, leaving the rectum behind. It is most usually performed for patients with inflammatory bowel diseases. The surgeons removed my colon (also known as large intestine or large bowel) and then formed an ileostomy which is an operation to create a stoma or an opening in the ileum (last part of the small intestine), which is stitched to the skin.
So I have no colon. My food goes from my small intestine out through a hole in my stomach (my stoma) and I wear an ileostomy bag attached to my skin at all times which collects all the poop. I still have a bum but it isn’t attached to anything!! Which means I no longer fart or poo from my butt…
In the next 6-12 months I have a decision to make. That decision is whether I have a further surgery that will remove the rest of my rectum and means I will have the ileostomy and wear a bag for the rest of my life.
Or whether I have an internal pouch made out of my small intestine which over the course of two operations would be reattached to my anus. This would mean I no longer have the bag and that I would poo from my butt again.
I am currently not going to make that decision. My goal right now is to recover from this surgery, get off all medications and get myself strong, fit and healthy.
Some people decide that the stoma and bag are just so convenient and easy for them to live with that they would rather not have more surgery and deal with all the consequences of reattaching the bowel. For others it is entirely the right thing to do.
For me? Im not too sure right now. I can’t even begin to think about these things and so Im not going to stress about it. Ill make that decision in the coming months with the support of my doctors, nurses and family.
So I hope this helps a little to explain what I have had done! For more information take a look at the NHS website or feel free to ask my any questions and Ill do my best to answer them!
Love Sam xx
Helloooooo! Well today is two days post op – it’s been a tough couple of days and I’m struggling a little but thought Id attempt a post.
Tuesday was op day, thanks to Mr C for updating the blog. I went down to theatre around 2pm and after getting my sexy surgical stockings on and going through consent forms etc, the anaesthetists put in an epidural for post op pain relief. She was fab and from Barnsley and sounded *just* like my sister in law Nancy so it was so comforting having her with me! We were talking whilst I got sorted and so as I drifted off under the general anaesthetic, she told me to imagine laying on a beach in Australia next to my sister! What fab personal and kind care!!!
I awoke in recovery a few hours later to my first question ‘Is Caroline here?’ She wasn’t but whilst I was out I had overheard a nurse who sounded just like her discussing the programme Doc Martin… I have to admit that I was a little disgruntled that she was talking about Martin Clunes over talking to me!! Haha!!! Poor Caroline!!!
I had a little pain when I woke, the nurses soon got it under control by altering my epidural and then Timm was there. It was amazing to see his face smiling down at me, he held my hands and made everything feel better.
Around this time there was some concern over my lactate levels, (genuinely described as ‘deranged’ LOVE it) they were on the high side and so needed to keep me in recovery for a whole longer, but Timm could stay and so all was fine. A couple of hours later the levels were still rising and so the decision was made to move me to the High Dependency Unit. Timm went home as he needed to get back to the kids and the staff needed to do their job.
I was moved to HDU which was a little scary and movie like – they explained things really well and though I was frightened, they kept me informed and I felt safe and comfortable. I had a nurse with me all the time and the care I received was just outstanding. I was covered in monitors, tubes and wires including an arterial line that was inserted into my wrist and SEWN into place!! Eek!!! But they did give me a local and so I had no pain.
Wednesday saw my levels improve and so around 2pm was moved back to my ward to recover. My potassium levels were off and so I still had to keep an IV with potassium in it. I had my epidural for pain relief that I have a button to add extra relief if needed and a catheter in as I couldn’t get up and down to the loo.
I felt shattered but on the whole, ok!! The nurses are fantastic here, so warm, caring, professional yet open. They make a difficult time so much easier, it’s embarrassing to be cared for, washed and have your toilet needs to be sorted by another person but they’re so relaxed and laid back about it that you feel at ease. It’s an amazing skill to have and I salute our nurses!!
Turns out IV potassium BURNS like its on fire!!!! Really really hurty arm after this one so trying the oral version (tastes awful but not painful at least!!)
Wednesday also saw my meds being dropped! Hooray!!! The 8 Pentasa I have been taking a day since June have been stopped! I know this may not seem like a big deal but it really gets to me having to take so many tablets every day so it felt like a real landmark. My IV steroids have been replaced by tablets that we have to taper down from now over the next few weeks.
To be honest, I think I was still on a bit of a high on Wednesday – Timm and Caroline visited me in the evening and I think they were surprised at how well I was. I mean, I felt exhausted and drained but emotionally I felt relief, happiness and quite elated that the ‘hard bit’ was over. I didn’t sleep particularly well but on the whole I felt in a good place.
So it came as a bit of a shock that today (Thursday) kind of hit me like a thunderstorm. It’s been a bit of a roller coaster today. It’s been kind of tough – there’s a couple of small problems with my stoma – it’s quite small and flat and it’s close to my wound. This means that the stoma itself doesn’t have enough of a ‘spout’ to sit in my ileostomy bag and is leaking.
This afternoon it leaked for the first time. My mum and sister were visiting and I looked down to see a lot of waste all over my stomach. I was devastated. I think it was shock more than anything and I just burst into tears. The nurses were AWESOME they came and cleaned me up, wiped away my tears and offered me comfort, support and kindness.
I was embarrassed and the reality of what was happening hit me like a ton of bricks. I felt like a baby, I felt dirty amd humiliated.
I had a big cry. (A snotty Chinese baby cry!!!!)
Then I manned up and got it sorted! The nurses cleaned me and discussed why it was leaking. They told me to trust them and let them care for me. I did something I’m probably not great at doing and let go of control.
Unfortunately I have leaked quite a few times since. The lay of my wounds mean that my stoma is leaking INTO my wound so I’m feeling very sore and I’m having to be cleaned a lot.
It’s just going to be a bit of a learning curve, trying different bags and seeing what works for me. They say it will be much easier once all the swelling goes down and my wound heals.
The wound!!! Scars are cool, right?!
Timm and the kids came to see me tonight which was fab but a little overwhelming. It was great to see them but difficult as I don’t want them to see me upset or in pain. Once they’d left I had a visit from my two oldest friends Tania and Hannah and had a bit of a weep. I just felt really emotional and ragged. I had to let go and it was good to have my old dear friends there to make it better.
What I’m finding from this situation is that my struggle is in being out of control and I need to learn to accept this and be ok that sometimes you can’t paint a smile over it. Sometimes it’s ok to say ‘I’m struggling’ because you know what? It feels good to have people around you who love you and who say ‘that’s ok, let me help’
So ill leave you with a couple of things, firstly is the shot of my ileostomy pouch…
And secondly, a nurse told me I should name my stoma!!!
So today I’m still no better, the drs, nurses, my family and myself all feel that all the medication has been given the best possible effort and it’s not working for me, so surgery is the right option for me now.
I’ve seen my consultant and my specialist IBD nurse and they have explained the surgery and what’s going to happen now.
I’m still at the Hallamshire and I’m just waiting now for a bed on the urgent surgery ward at the Northern General. Once I get a bed Ill just be on a priority waiting list for surgery so it could be any time in the next day or so.
My IBD nurse has been to measure me for where my stoma will be fitted… It’s the big black permanent marker spot!
You can read a bit more about the type of surgery I’m having here
So it’s just a waiting game now! It could be any time in the next few days. I’m feeling an odd sensation of fear and relief. I’m scared about the surgery, about the pain and any possible complications. But I’m relieved that I can see the light at the end of the tunnel.
Surgery is a huge decision and I just want to make sure that I get across that I know it’s not for everyone. For ten years I have lived with this disease, I’ve tried the meds, I’ve lived through so many flare ups and hospital stays. I have cried too many tears and been through enough pain, humiliation and embarrassment. I have dealt with side effects of meds from moon face to palpitations, depression to insomnia.
And so now is the time to move forward. Get this bowel out and move my life onwards and upwards!
I’m still going to try and blog, but if I can’t then Ill make sure Timm updates you all to how things are going.
If anything changes later then Ill possibly update myself, but till then I’m going to try and rest up as I’m feeling totally wiped out and I need to prepare myself physically and mentally for the upcoming days.