Tag Archives: hospital

Had my iron infusion!

18 Dec

Dad asked if I wanted a photo for my blog before he went back to work so here it is! 😀

Hey readers,

Just got home from having the day in hospital for my iron (cosmofer) infusion. To start with I had a weaker dose for an hour, then had an hour break and was monitored. If you’ve never had an iron infusion before, like me, they give you the weaker dose to start with to see how your body reacts to the iron itself and almost weaning you on to it, as oppose to giving you the stronger, full dose all in one at a faster infusion rate.

My first dose: looks like watered down Coca-Cola!

My first dose: looks like watered down Coca-Cola!

I only experienced a few symptoms mildly; a drop in my blood pressure, developed a bit of a high temperature and felt a bit light headed but these soon wore off after I’d been taken off the first infusion within about 15 minutes. For somebody of my age, the nurse said it was expected to have a drop in blood pressure and that this is what happens with a lot of infusions of different medications.


The second dose.

After that I had the stronger dose which took about an hour and forty-fiveminutes to infuse then half an hours observation afterwards. I felt a lot better on this one, despite being a bit apprehensive about it after feeling a side effects with the weaker one. I had a joke with the nurse that it looked like she had poured the Coca-Cola that I was drinking into the infusion solution bag and that I was going to keep telling myself it was Cola to take my mind off it 😀 As I understand it, the infusion rate is dependent on factors such as your weight, how your body reacts to the treatment and whether you have had it before or not.  Throughout the infusion, they also check your blood pressure, pulse and temperature; usually in half-hour intervals. From my experience, you can also eat and drink as normal throughout and I did not have to fast or anything to prepare for it. The only thing it required was to stop taking iron tablets five days before the infusion, but I wasn’t on them anyway myself.

I’m feeling a bit like I’m on another planet at the moment and exhausted but hopefully the infusion will start to work in the near future. I’ve been a bit clammy and had a bit of stomach ache and a temperature and have had a few dozes on the sofa tonight!

Best wishes from Amy & Stacey Stoma x x


Fall down seven times, stand up eight.

22 Sep

…At least, that’s what I keep telling myself. I’m having quite a blip at the moment, but before I go into that, I’ll tell you how I’m getting on at University.

University so far is great. I am really enjoying myself, and although I’m ill at the moment and have had a few problems, I have enjoyed a few nights out and have been getting to know some lovely people. I have told a few people about my ostomy, and they have been very interested and supportive.
I’ve got my timetable, and besides the 8pm finish on a Tuesday, everything looks pretty gravy baby, as some would say! Looking forward to getting started & into the work now, although, I will probably regret saying that when I’m stressed up to my eyeballs in work in a few months time! My accommodation is lovely, I really like it and I am so glad I opted for en-suite as it makes my life so much easier.

So, about this blip…Well, if you’ve been following my blog, you will know that over the past few months I have been having problems with partial blockages and pain when food is coming through Stacey. This pain came to an absolute high the other night. It all kicked off when I got chips on the way home from a night out, and didn’t chew them properly, which set off the pain, then 4/5 days later, I’m still in agony, even after the chips have passed through. It gets worse every time I eat, but I have the appetite of a very large pig at the moment, so this really isn’t ideal. I rang my stoma nurse up on Wednesday, having tried to have put up with it and sit it out, but it was all getting too much to handle, I’ve had Crohn’s since aged 7, so I definitely know when something is wrong with my body and have learnt to trust my instincts now. I’ve been getting a huge amount of pressure behind Stacey which has been very painful after I’ve eaten, it’s been at it’s worst on a night when I’ve obviously got all my meals going through me from the day, but I never really put food and the pain together until I saw my stoma nurse and the Prof who did my operation yesterday. Stacey has been finding it hard to push things through, and I’ve been getting build ups of food behind my stoma, especially behind her at the top and right hand side (as I’m looking at her) which I have been having to massage and squeeze to get food through, unfortunately with great pain involved. I’ve also been feeling sick when I’ve had stomach pain, very close to actually being sick on a few occasions and have been feeling very faint and generally out of sorts. Stacey has been nipping and wriggling no end on my stomach and swelling then shrinking daily as my food has been working it’s way through and bending over to pick something up or getting dressed has been so painful. So yes, I gave in, I’d had enough, and off up to the hospital I went with Mum yesterday morning.

On arrival, we went to the Outpatients’ Reception where I had to wait for my stoma nurse, and I sat huddled over in the chair with my Mum rubbing my back, in pain and wanting to fall asleep from hardly any sleep the night before from the pain. Then, it was in to see my stoma nurse. She checked Stacey and managed to get her finger down her and said she looked and felt fine. However, we were both still very curious as to why I have been getting so much pain, so she went to get a surgical registrar to have a look at me, especially as I had said that the pain had got so bad the night before that I had nearly got my Mum to take me into A & E. To my surprise, the Prof who did my operation came through the door to see me, as he said he wanted to check me himself and sort me out, which I thought was lovely. I trust him 100% with my problems and know he will do whatever he can to make me well, he is fantastic and I know he has my best interests at heart, as any good medical professional should. He asked me about my symptoms etc and within very little time diagnosed me. I have a partial obstruction in my bowel, just behind my stoma, due to scar tissue, he says it is extremely likely.

Even when I have problems, I am still so thankful for Stacey and the great medical team that I have 🙂

All the things he was describing and my symptoms go hand in hand, and I was pleasantly stunned at how quick he came up with some answers for me, I actually said to him, “That’s the man right there!” :D, with a big smile on my face at how I’d gone from worrying what was wrong to getting some answers so quickly. The obstruction in my bowel from adhesions (scar tissue) has most likely made a kink in my bowel not far from the mucosal junction (where Stacey comes out of my skin on my stomach) that is made worse by food. I am now on a liquid diet for 2 days to see if that eases it to help secure the diagnosis, and so far, I’ve had very little pain compared to what I was having the day before yesterday on a normal diet. I have to go back for a few tests soon, one being an x-ray of my stoma with dye injected into Stacey to try and find out exactly where the obstruction is. Otherwise, I am not entirely sure on the other tests, although there was mention of me maybe benefiting from a camera down my stoma to have a better look at things.

We will find out soon when I get my letters through, then I will be going for the results to see Prof again in a few weeks time. After these few days, it’s a very low residue diet for me and taking things very carefully. Then, once I get my results, we might be able to sort things with diet, pain relief or I might have to have another operation, which could lead to more scar tissue, it’s all a vicious circle really and neither outcome is exactly brilliant. On the plus side, at least now I have some answers, and also, I no longer have to dilate my stoma as the Prof said Stacey isn’t the problem, it’s my obstruction making things painful and dilating will not help. I am very low on energy, coming down with a cold, and really not in the mood for all of this struggling and pain. I have just started University…and I have been through enough pain in my lifetime, but obviously, these things just have to test me and see how strong I really am.

These things come to try us.

& even in pain, I still try to see things positively 🙂

Nightmares to do with my ileostomy

6 Nov

So today I’ve been feeling pretty rough, still got my cold, nose seems to be getting better then worse repeatedly, and it’s spread to my chest really bad. Got quite a bit of mucus on my chest it feels like and it just won’t shift. I can’t taste anything or smell, my voice keeps going weird, keep coughing and every time I breathe in and out its like my chest is whistling and all croaky at the same time 😦 Don’t know if I’m on my food or off my food, feel hungry but no matter what I eat it seems to make no difference.

Have slept most of the day and lately I have been having nightmares related to my ileostomy bag which I’ve woken up from feeling totally out of place and a bit sick and weirded out. After my operation I had nightmares in hospital, they were truly horrible. I would dream that I was standing in front of a mirror and all my intestines were hanging out my tummy and that I couldn’t stop being sick, then I woke up being sick in my sleep and in a panic, was truly horrid. One of the doctors said that what we dream is a lot to do with what is on our minds, she is right. I had a bit of a careless accident last night with my bag, which I believe caused the nightmares. I was in a rush and went to empty my bag into the toilet standing up and because there was a lot in the bag and the way I was aiming it I missed the toilet with most of it and got it everywhere, and ended up cleaning it up and bleaching everywhere. Luckily I had a blocked nose as I could smell it a little and it was vile, but I had a nightmare that I was getting it all over in the weirdest of places and having panic attacks and not knowing what to do. Once again, I woke up feeling really upset and sick.

Really want to feel better soon, all I want to do is cry! 😦



25 Oct

Hello again everybody!

Been having a few tingling and pulling pains on my internal stitches as I’ve been putting on weight and the scar on my tummy has been stretching a bit, so just trying not to do too much stretching or over exert myself. Last time I weighed myself I’d put on 2 and a half stone 2 and a half months after my operation, so about 3 pounds a week, really pleased!!! 🙂

Thought I’d do a post today on bathing and showering with my Ileostomy.

After my surgery, I mainly showered with my bag on for the first 5/6 weeks, then changed it after I’d had a shower as the bags I had did not really stick well after a shower and I change my bag once a day as this makes me feel a lot cleaner and more hygenic and works the best for me. So I figured that it would make sense to change the bag after I’d got out the shower, dried myself and towel dried the bag so it wasn’t wet through and dripping everywhere before I took it off.

The thought of having a shower with my ileostomy bag on took a lot of getting my head around, it was the unknown really that made me quite reluctant to give it a go, as I was not sure how it would feel and figured it would feel a bit weird somehow. Also, I’d just had major surgery which had been very touch and go, the rest of it was way more than enough to get my head around such as learning how to change the bag etc let alone considering how I was going to shower! I also was worried about water going in my stoma, & it being active in the shower and waste coming out. However, when I saw my stoma nurse I was soon reminded that water will NOT enter my body via my stoma and I could submerge it in a bath and it still would not get water into it into my body. She also helped me to realise – what was the point in worrying about waste coming out? I could simply wash it down the plug hole, it goes down the same pipes out the house into the drains anyway!

To start with, around 7/8 weeks after my surgery, I showered two or three times a week without my bag to get myself used to the feeling and when my stoma is most likely to be active etc. Also, my stoma nurse suggested using an empty yoghurt pot for when I am out of the shower between bag changes to catch any waste my stoma decides to put out. My nurse is fantastic, she really is. So I always have an empty yoghurt pot in the bathroom now which has saved me getting a mess everywhere on quite a few occasions now, it saves me a lot of worry and panic 😀 Now, I am 11 weeks after my operation and I have showered for the last 3 weeks without my bag on, it feels a lot better and I wouldn’t go back to showering with my bag. Showering without my bag gives me time for my skin which is usually under my bag to breathe and I get to give my stoma and the skin a proper clean. Also I find I don’t go through my supplies as much (dry wipes) so they last a lot longer as I only use one afterwards to dry my stoma and the skin when I have first towel dried it by patting the stoma and skin gently. Then I put a new bag on! 🙂

I had my first proper bath after I came out of hospital with my bag on. I’m not keen on baths when it’s warmer weather but I will be trying a bath without a bag in Winter when it’s colder as I love baths in Winter, they make you feel so much warmer and better in an instant! 😀 Taking a bath with my bag off may be different, as the water isn’t constantly washing things down the plug hole, so I will see about that one, may have to time it to a more suitable time when my output is less!

Going to see my stoma nurse again tomorrow morning.

Take care everyone 🙂 x

Hydroframe Flange Extenders

20 Oct

Well the dentists was fine, thankfully! Not a big fan of the Dentists, but then again, I don’t think many people are. Just got to go back for a scale and polish.

Having to wear my Dansac bags until my Coloplast prescription gets delivered, needless to say the bag came loose yet again last night, despite using some HydroMini Flange Extenders to give some extra adhesive to some of the bag. One of the areas that didn’t have one on had nearly peeled all the way off when I woke up this morning, but luckily no mess was made! Surprised myself at how quick I changed my bag, pleasantly surprised 🙂 The standard size extenders seem to be a lot better for on a night. I would really recommend the Hydroframe flange extenders from CliniMed, they are really good to help bags stick if you have sticking issues or even if you just want to feel a bit more secure that the bag will stick when you’re out, and also to increase wear time such as if you’re active/doing sports or throughout the night. You can get them in the standard size or in a handy little mini size that is easy to carry around. This is the standard size below:

And here are the Hydroframe Mini Flange Extenders:

I always find that I have to cut down the standard size as if I put them on they always sit over my belly button and start to peel off as they can’t stick down securely. Both products are very easy to apply, you literally peel the middle backing piece away and position it where you want it either before you put a bag on or after, it doesn’t really matter. I always do mine when the bag is already on as this is the way I’ve always done it and it’s easy and doesn’t require a lot of fiddling! Then when you’ve got it where you want on your bag, you peel both of the end bits of backing off and press those down securely onto the skin smoothly. I also keep my hand pressed over the extender for half a minute or so to ensure the adhesive warms to my skin securely. I tend to use the mini ones more than the standard size.

The Standard Hydroframe Flange Extenders are good for:

  • Additional adhesion
  • Increased wear time of the bag
  • The application of them – they are very easy to apply
  • Reduced peristomal skin irritation

The Mini HydroFrame Flange Extenders are good for:

  • Use on smaller areas where the extra adhesive is needed
  • Paediatric applications
  • Extra protection behind stoma belt lugs
  • An alternative to more harsh medical tape
  • Fixation in small areas such as fistulas or drain sites

Really good products, I definitely recommend 🙂 And both are available on prescription.

They are available to order at:


I also wear a really comfy shallow waistband during the daytime most days from Comfizz.

This is the one I wear, I like it because it is very comfortable, provides extra support/security and is a skin colour so isn’t obvious under white tops etc. It is £9.00 if you do not get it on prescription, but I think in the UK you can order up to 6 Stoma Support Wear products a year on prescription and this is available on prescription as far as I’m aware. I paid for mine but £9.00 really is not bad for a great product 🙂

You can have a look at the product and others on the site at:


Ta ta for now! 😀

Yay for Coloplast!

13 Oct

So I went to see my Stoma Nurse again this Tuesday just gone, my oh my she makes me life a million times easier, without her I wouldn’t be here, fact. The fact that she dedicates so much time to make my life easier and help me through my ileostomy journey is amazing. Even just by sitting and talking to her about my worries I feel tons better.

She suggested me trying some other bags and also trying a two-piece system to try and correct the sticking issues and wind/output issues on a night. At the moment I am wearing the Coloplast One-Piece Drainable Assura Ileostomy bag and so far, no sticking issues! YAY! Had it on from about 13:45 yesterday afternoon after my shower, and here I am nearly 24 hours later with it still very well intact, no adhesive peeling away from the skin or anything! Fingers crossed this carries on over the next few days of using the same make and same bags. Also, on another positive note, I had a great night’s sleep, without having to empty wind out the bag or empty the bag until 5:30am this morning then sleeping through another 5 hours without any problems. These bags seem a lot better at filtering wind and even though there was a little wind in it this morning after I woke up, it was not a problem at all unlike the ballooning before, I didn’t notice it until I was about to empty it on the toilet just after midday today. This makes me feel SO much better about things 🙂 Really hope it stays that way! I also find the velcro side tabs make me feel a lot more secure and the fact that there is a little gap that you can lift in the fabric to check your stoma. Also, I love the fact that you can fold the tail up so it isn’t visible and also fold the bag and tuck it in half when the output is little.

There’s the bag on the right above 🙂

Also, got prescribed some Immodium Melts to help with the output as it has been really watery and my GP said that the tablets that you melt on the tongue will be a lot more absorbed than the capsules so am trying some of those. Got to measure the watery output I’m having just to check it’s not overly crazy and take it from there!

Hope everyone is doing good 🙂

2 months yesterday since surgery.

10 Oct

& we made it Stacey! 🙂

It has been more tough to adjust these past few weeks & I have found that problems have started to occur as I start to get back to somewhat like normal. It has been a real rollercoaster and I have become quite depressed in some ways, although I am extremely grateful to have had the operation and had my stoma formed as it saved my life 🙂 That fact will never ever change that I am grateful for my stoma giving me a life, but at the same time nobody said it would be easy, it is far from easy. So long as you have the right support and someone you can talk to who will listen and you can trust, the whole process is A LOT easier mind 🙂 It feels easier when you also have someone you can empathise with, which is why I ensure I speak to people who have a stoma of all different ages and from different backgrounds 🙂

One thing that has become apparent to me is that as I have started to get back to “normal” (or as normal as is normal for me :p) a lot of people take the attitude that just because I look better on the outside, I must be better inside. No, I am not recovered inside, it is just the start, and I am far from recovered emotionally and physically, I think some people can be very naive and almost arrogant. The operation changed my life for the better, no doubt, but people must also remember that it has been a huge change for me emotionally as well, and that in itself as well as physically, will take me a lot of time to fully adapt. I accept it, don’t get me wrong, I do not resent my stoma (Stacey :p) at all, but it is a long journey to get to the point where she is fully second nature to me and fully established in my daily routine. She is part of me & I am so thankful for that, but time is a healer as they say.

Hope everybody is well 🙂

I’m seeing my Stoma Nurse tomorrow again, so I will tell her that I am struggling, I spoke to her briefly on the phone and she is aware I am. I have done so well so far, so I will not let the fact that I am going through a down patch make me not feel proud of myself for what I have achieved so far. After all, it is a major thing and it isn’t all plain sailing.

Ta ta for now 😀