Well, what a month! For anyone not following me over on social media, I am now out of hospital, yay!
I was released on Monday 16th March after three weeks in hospital. Although my symptoms haven’t all been rectified, they are a lot better than they were.
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Weekends in hospital are generally the worst. Unless there is a plan in place to go home, nothing much happens unless there is an emergency.
Stanley Stoma seems to have woken up which is good so they are pretty satisfied that the CT which showed no kinks or blockages along my small intestine was correct. They are hoping the manipulation of the structure behind my stoma will continue to ensure things can pass which seems to be the case at the moment, although my output is still only water and mucus. I’m now awaiting gastro back to talk about my stomach and where we go from here with the awful pain, nausea and vomiting which has been pretty hellish all weekend. Pain meds are helping take the edge off but once I eat anything it makes it a million times worse. I’m so hungry though and obviously need something inside me to function!
Both phosphates and potassium are low so I’m having a horrible phosphate drink. Luckily, the potassium has gone into my drip bag… Could not stomach that drink, especially already being nauseous!
When the surgeon came and saw that my stoma was working better in Saturday he’s upgraded my food thank goodness! I still can’t eat much but it’s nice to have a little more than chicken soup, ice-cream, jelly and yoghurt! Being able to have a biscuit and a cup of tea in the evening is like a dream! The low residue menu diet still isn’t great here but as I can’t eat a full meal anyway I am able to pick off the safe foods to eat.
This one has continued to work for the weekend well which is good. I have had a couple of subcutaneous cannulas in for my morphine pain relief to save me getting stabbed every time they do it. Turning into a pin cushion between those, daily blood tests and blood clotting injections!
Normality is a funny old concept really isn’t it – everyone’s perception is different but we don’t always think like that. As someone with a chronic illness (or few) my reality will be very different to many though. I have different abilities, expectations, goals and needs. This weekend I’ve missed MY normality. Being able to go make myself available cup of tea, put some washing on, do the ironing, have a nap on the sofa. I don’t want to get out and do anything extraordinary at this point… I just want to be home!
Have had Mum and Dad visit both days over the weekend and on Saturday they bought me some new PJs, underwear and fluffy socks which was lovely. My mum is an absolute diamond and I don’t know what I would do without her to be honest! She has cut my toenails and washed my hair for me this weekend. Two jobs I couldn’t manage myself and she did them. I’m so lucky to have parents who really help and care. While we pamper, my dad goes and fetches the Costas so is also very much appreciated too! My Aunty and Uncle also came in yesterday with some more puzzle books yesterday to keep my brain busy and made me laugh which was definitely needed! My stoma is a great source of hilarity in my family but I wouldn’t have it any other way. Everyone is so supportive and if you don’t laugh you cry, right?
I’m hoping that Monday will bring round some more plans and see what we can get sorted so I can get out of here! Will keep you updated as always,
Today wasn’t a good day for me, my pain and nausea/vomiting certainly ramped up.
I didn’t see my normal consultant as she isn’t on the ward this week but the doctor I saw today was lovely. He was worried as my ostomy output is extremely slow and my abdomen is very distended so he ordered an emergency CT to rule out a blockage and has bumped my MRI to urgent as the camera test was inconclusive about what’s going on in the small bowel and the biopsy results aren’t back yet.
We talked briefly about long term possible changing my biologics and he’s noted that down.
This was pretty easy and it’s a test I’ve had a few times before. They take a few images, then put a dye in your cannula which creates a warm sensation and makes you feel like you are going to wet yourself…but you don’t! A little strange but not painful at all.
The CT radiographer requested I had a second cannula put in so someone came to do it and it lasted less than 20 minutes. My veins really are hating these more and more again! Another lovely bruise to add to the collection. Luckily, CT said as long as my other one was working fine they were happy for me to go down
Today was a mixed bag as I had breakfast, then was spit on fluids only by the doctor. Due to my nausea and pain which gets worse when I eat, I’m not really feeling much like eating but do get so hungry still so when the stoma nurse popped up yesterday she told me to stick to low Res, liquids and purses. Limited choices but as I’m not feeling overly like eating, just occasionally it’s not so bad. Still allowed cups of tea and even though they take me a while to drink as have to take it slow, I’m happy.
Ste came to visit this afternoon and bought me in some bits. He has been such an amazing support, mentally he is keeping me really strong and I can’t thank him enough for that. As well as keeping my house ticking over and taking care of the doggies bless him.
My mum and dad didn’t visit tonight as he has a ‘Bake Off’ competition at work for Thyroid UK which is a charity close to our hearts as both my mum and Aunty have underactive thyroids. He’s tested his cake out and I got to try some on Monday and it was delicious. Tonight he made his final one for the competition so please cross your fingers for him! It’s a chocolate orange cake and I think he has gone fab.
Looking forward to hopefully a brighter day tomorrow and getting some results and an idea of what’s going on with my insides. Thanks for your continued support,
I managed a pretty decent night’s sleep last night to be fair, which is good for me in hospital!
Breakfast was the only meal I photographed today as I then had to go nil by mouth for my camera tests and then only had a sandwich for tea so not very interesting! I opted for porridge and a slice of jam on toast and I couldn’t complain!
After this I couldn’t eat anything till after the Flexible Sigmoidoscopy and Ileoscope which were booked for that afternoon. I was allowed clear fluids till 11am and braved a black tea which actually wasn’t as bad as I thought! Too much milk doesn’t tend to agree with me when things are playing up so think that helped!
I was due to be taken down to have the cameras done at 1pm but it was closer to 3pm in the end and in the meantime I was moved to the gastro ward. I’m in a side room again which is nice and private with my own bathroom. When you have a stoma it really is such a blessing to have your own bathroom in here.
I was taken down to endoscopy just before 3pm and my vitals were all checked and then I waited about half an hour before being taken in. The staff down there were all lovely.
I had the Flexible Sigmoidoscopy first after some sedation. Due to strictures they know are down there already they also use a pediatric scope to try and make it a little easier. It was still quite painful but not as bad as the one I had about 10 months ago. He said there was inflammation and has taken biopsies to confirm whether it’s diversion colitis or avtive Crohn’s. My previous post – A Day In The Life – Flexible Sigmoidoscopy – explains more about this procedure and the prep I had to follow from home.
I wasn’t looking forward to the Ileoscope as have never had one before but it really wasn’t as bad as I imagined. The first part was sore as we discovered that there is a rather large stricture right behind my stoma which may be causing alot of my issues! The doctor used his little finger to find this and then the scope to get in for a closer look. There was a lot of backed up output behind my stoma which is obviously struggling to get out past the structure. The doctor did his best to clear this but then there was an awful lot and it was becoming uncomfortable with the amount of air he was having to use. He said the bowel he could see looked pretty healthy but he couldn’t be sure from the view he got so took some biopsies to check for inflammation. He is hoping the dilation with his finger/the camera will help open the stoma up now so fingers crossed!
No new cannulas needed today as the one on the back of my arm is working beautifully. The one that tissued yesterday has left my arm a right mess though! You can see the thick line at the right hand side of the bruise is where my vein has completely collapsed – that one will never be good for anything again! Luckily it’s not too sore which is good, even with how horrific it looks!
Had Ste, my mum and dad come to visit again today which was lovely. Ste hasn’t been feeling well at all today so it was good to see his face tonight and a big thank you to my mum and dad for bringing him in. My mum bought me a book and Ste got me my slippers and some snacks. I also got to phone the boys which was lovely. I had to fill them in on being back in here but said I was getting some medicine and tests done so they could get me better and they were happy about that. Told them about the camera test in the stoma and their faces were epic! They’d both done their karate lesson and Riley was very happy to tell me he wasn’t told off at all! He also showed me the vegetables they had planted have started to grow and that they had polished off the rest of the Brownie we made at the weekend!
Unfortunately have been struggling with heavy nausea since trying to eat some tea and also lots of pain in my large bowel area (probably following the camera test) so going to try and get an early night. Thank you all again for your continued support. I’m going to write a more in depth post on the Ileoscope procedure once I’m out for those who want to know more but feel free to ask any questions in the comments below.
When you first get an ostomy, the world of products available can be a very disorientating and intimidating place. Do I need a ring? What is a flange? I decided to put together a glossary type guide to let you know what everything is, and what may be available that could solve a problem you are having.
This is one of the products your stoma nurse should introduce you to. Adhesive remover will help you remove your bag with minimal pulling which should help protect your skin. Most companies offer their own versions of this and you can get it in spray or wipe form.
I find the spray better for removing my bag, but then use an adhesive remover wipe to get rid of the sticky residue left on my skin.
Probably the most obvious product you will need! But whats with all the options? Here is a brief description of the different stoma bags which you can use, which are also called pouches.
Barrier rings can also provide a level of convexity, helping with low profile stomas. They can help fill uneven skin and scar areas around the stoma to prevent leaks and protect the skin. Barrier rings are often available in round and oval shapes and can be moulded to fit any size and shape of stoma. They can be applied directly to the skin before you place your bag on, or onto the bag itself before you put it on.
Another product your stoma nurse should automatically provide you with. Barrier products should be applied after you have cleaned and dried your skin and then allowed to dry before putting on your bag. They not only help protect your skin but will help it heal if it does become sore. There are lots of different options out there and different ones work for different people. It is basically trial and error to find which product and in which form it best protects your skin.
There are so many companies out there offering a whole range of products. What works for one will not work for all so having such a vast choice is great but can be a little overwhelming. Here are as many of the ostomy companies I could think of and links to their websites for you to explore their products and services. Many have stoma nurses and product specialists on hand to talk to you should you require advice and can send out samples so you can try out products before adding them to your prescription.
Again, there are a large number of delivery companies and your stoma nurse will allocate you one and help you place your first order. You may be contacted by others and can change if you wish but don’t feel pressured to if you are happy with the service you are getting.
These are usually a complimentary item offered by the delivery companies. They are used for drying around your stoma to help make sure it is completely dry before applying a new bag.
The filter is part of the ostomy bag. It is designed to help with the build up gas produced by your ostomy, so your bag doesn’t ‘balloon’. Some work better than others!
Respond also offer the EZ Vent which is an air release device designed to be used with any brand of bag. Stephie over at Colitis To Ostomy reviewed the Osto EZ vent here
An alternative to rings and pastes, these can be used to fill creases and folds in the skin around the stoma, where leaks may occur. They can be stacked until the desired depth is achieved. Also an alternative for providing convexity.
The baseplate or flange (I personally hate that word!) is the sticky part of the bag that adheres to your skin around the stoma. Some are oval, some round and some petal shaped, designed to better move with your body. Some also contain things like Vitamin E, designed to help people with sore skin. You can cut your baSeplate to fit your stoma yourself, or ask your delivery company to pre-cut them for you before they deliver them. Ask your stoma nurse to help you measure your stoma correctly before telling them what size you need them cutting to.
Extenders are strips you can place around your bag (usually in two or three pieces) to give you some added security. I use them if the edges of my baseplate sticks up a bit (otherwise I pick and then hate it when it gets fluff from my clothes on. I also use stronger ones when going to the gym or swimming for example.
Check out my review – Stripping Down Baseplate Extenders – Worth The Hype?
Gelling agents can be popped into your bag when you have very loose, liquid output. They help[ thicken the output into a gel like substance, controlling the consistency withouyt needinbg to make dietary changes. Some also claim to help control odour aswell.
These bags are designed for people with extremely high, pure liquid output. They will ned to be ordered by your stoma nurse if you are struggling with this. They are larger in size and have a soft tap on the bottom which can be connected to a collection device.
Pancaking occurs when a vacuum happens in the stoma bag and the output can not drop into the bottom of the bag. Output will collect at the top of the bag, potentially blocking the filter, causing soreness and pushing off the bag causing a leak. Lubrication products help the output slide down to the bottom of the bag, especially good for when your output is thicker. Some also claim to aid with odour.
Odour can be one of the biggest concerns for ostomates and there are lots of products available on prescription and to purchase to help control this. Some work better than others, but different things work for different people so give everything a try and see what you prefer.
Check out my post – Stinky Stanley – Coping With Smelly Output
Ostomy belts work with convex bag systems and help pull these further into the abdomen. This increases the tension and helps prevent leaks. They can be especially useful at night time with frequent rolling and movement in bed.
The Brava Protective Sheet is designed to be an extra protective layer under the base plate. It is skin friendly and also helps provide a smooth surface to apply the bag to. They are available in three different sizes.
See a video on how to use them here
You can test out most items offered by a company by requesting a sample. This is a great way of seeing whether a product suits you before adding it to our prescription. You can call a company to request samples and some may be requested online.
Collars are suitable for all round shaped stomas and help give a stoma more shape and direction, resulting in a better spout. This will help prevent output from coming onto contact with the skin and heading straight into the bag.
Stoma paste is used to fill gaps and creases in the skin around the stoma. It helps provide an even surface to adhere your bag to, helping get a better seal and preventing leaks.
A stoma guard helps protect your stoma and can be held in place by form fitting clothing or a belt.
You can get some support wear on prescription and some you can purchase. They can be used daily but are especially good for if you exercise and use the gym for example, as your stomach will need more support with an ostomy following surgery. Always consult with your stoma nurse/surgeon before returning to any exercise regime to make sure you do not increase your risk of hernias and other issues. They can advise on how to gently get back into workouts. Some companies that offer support wear include
A night drainage bag is available for urostomates to help them get an undisturbed and restful nights sleep. The bags are attached to the urostomy pouch and collect the urine while you sleep.
Find out more about urostomies over at Rocking 2 Stomas
Another complimentary item provided by stoma delivery companies. These are fragrance and nasties free, so you can clean the stoma and surrounding skin when doing a bag change.
I hope this has been really helpful in explaining some of the products and services available. It will not be an exhaustive list, although I have added as much as I can. Please let me know in the comments if you know anymore! This is also a UK list (although some of the companies are active in other countries) as a worldwide one would just be MILES long! Hope you all have a fantastic week,
