Tag Archives: ileostomy


3 May

Hi readers,

Just a post to let you all know I recently started a new blog to keep track of my post-surgery experiences more regularly and also start to introduce videos into my posts.

I will still keep this blog open for those who wish to read posts earlier on in my recovery after surgery etc, but all new posts can be found and subscribed to at:


Many thanks for all the continued support from my followers on this blog & readers & please don’t hesitate to read/subscribe to/follow my new blog! ๐Ÿ™‚

Best wishes,

Amy & Stacey Stoma x x


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! ๐Ÿ˜€

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 ๐Ÿ˜€ 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. ย 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

Waiting for my iron infusion.

16 Nov

Hi readers,

I went to the hospital for a check-up the Thursday before last & got some really good news; my Crohn’s is not reccurent, so since my surgery I have been Crohn’s free… That’s 2 years & 3 months I’ve kicked Crohn’s in the ass! (no pun intended, well maybe!).

The previous tests I’ve had such as the barium enema x-ray and the barium meal showed that the stomach pains I get when I am stressed or run down are not Crohn’s related, but down to muscle spasms just behind my stoma. Buscopan is a no-no for me so they’ve given me an alternative anti-spasmodic to try – Alverine. I haven’t actually tried them yet as I haven’t been keen to since the Buscopan didn’t agree with me but will be trying them in the next week or so if my stomach spasms become more of a problem.

My latest blood test results revealed that the suspected Anaemia is at bay and that my body does have the right quality of red blood cells and my HB (Haemoglobin) levels are okay, but that it is my iron stores within my body that are rock bottom so need bringing up in order to allow my body to tick over – guess that’s the easy way of putting it! I’m waiting on my iron transfusion date to come through and hoping this will do me some good, putting my apprehension aside. I’ve always found it strange the thought of infusions as I’m usually used to having blood taken, not iron or blood pumped into me, but I’ve had a few blood transfusions so I’m hoping the iron one will do more good than give me side effects and I will notice a considerable improvement as I’m getting fed up of having no energy and scraping myself off the floor.

Thanks for reading everyone.

Best wishes from Amy & Stacey Stoma ๐Ÿ™‚


Happy 2 years Stacey Stoma!

9 Aug

So 2 years ago today Stacey was created!

Wow what a journey it has been, it has been the hardest journey of my life but I’d do it all again to feel how I do now.

It would have also been my Uncle’s 50th today, and thanks to him, his journey with Ulcerative Colitis and his own experience of having a stoma, I was less scared and had the courage to go through with my operation. He will always be such an inspiration to me. Sleep tight Uncle Graham โ™ฅโ™ฅ

I’ll do a post in a lot more detail soon about how far I’ve come, the ups and downs and other aspects of living with a stoma for 2 years and how you get used to it, but for now I thought I’d post some pictures from just after my operation and now.


My stomach when it was swollen with my abscess before my operation, my stomach a few hours after, picture from my colonoscopy before showing the extent of the disease, cannula in A & E and pics from immediately after and soon after my operation.


“Now you see me, now you don’t.” ๐Ÿ™‚
Ostomism not Pessimism ๐Ÿ™‚ Me today on my 2nd Stomaversary ๐Ÿ™‚

Hope my readers are well & I’ll post soon! Thank you for all the comments & lovely e-mails I’ve been receiving recently too!

Best Wishes from Amy & Stacey Stoma xx

First day of Summer 2013

31 May

That’s tomorrow ๐Ÿ™‚

I don’t really know where to start or what to write as it’s been a while, a long while!

Health wise, my Crohn’s is in remission and the latest blood tests show my inflammation markers are normal. My iron levels are slightly low, they are at 8 when they should be 15, but the doctor said this doesn’t quite class me as anaemic. I’ve got some Spatone sachets to try to mix with juice etc as I don’t get on overly well with iron tablets. I seem to remember having those sachets before and not being a big fan, but going to try again as I really want to have the best chance of having good health altogether and good energy levels. Haven’t seen my consultant for sometime with one thing and another and not being in one place, so I’m seeing him towards the end of June hopefully for a review. The doctor on the phone who gave me my blood results explained that because I’ve had an ileostomy formed, and therefore have a shorter bowel than a person without, this is most likely the reason why I always have trouble with my iron levels and find it hard to absorb iron and keep a constant level within my body.

Thank you for all your comments & to my readers who have supported me & always do with this blog no matter how much of a gap I go between posting. It’s been fantastic & really heart-warming to see the amount of people still visiting, reading and benefiting from this.

Best wishes.

Amy & Stacey Stoma ๐Ÿ™‚ xx

Oh hi 8 stone! We finally meet again… This time without steroids.

19 Dec

Wahoooo! So I’ve just been on the scales and I’m finally at the 8 stone mark, without any steroids or medication for my Crohn’s! Really pleased.

I have always struggled with my weight, as most people with IBD do & have always struggled to keep it stabilised and put weight on, especially without steroid intervention and other nasty side effects.

The most I’ve ever weighed was around 8 and a half/9 stone, so this for me is quite an achievement. Also, considering I was barely 5 stone just over a year ago before and after my operation, I’d say a 3 stone gain is good going! My family and a few of my IBD friends have said to me how it’s rare to hear a woman complaining about not being able toย put on weight instead of lose it, and that’s very reflective of my struggle. I have never wanted to lose weight, it is a dream to actually wear size 8 jeans without a belt and lots of baggy material literally hanging off me. Of course, I used to get the obnoxious people as you do in life, who used to assume I was starving myself and I was anorexic, but then again, just shows how naive and horribly judgemental some people can be. That’s a major thing with our society today; everyone’s too busy jumping to conclusions from what they see, or what they’ve heard, rather than making an informed judgement based on the true facts. Something my Dad always says to me, which has become a bit of a laugh and in-joke, is that when you’re dealing with anything in life, you have to beย pragmaticย about the situation. As much as we have a laugh that it’s pretty much become my Dad’s catchphrase (one of many!), I feel there is a great deal of truth in that statement in life.

I still get people telling me I’m skinny at the moment, but to be honest, I’m content with the weight I am. Yes, I am not large and I am thin and small framed, but that is who I am and probably who I will always be, that’s pretty much inevitable. People don’t realise how, especially when you’re having a down day, comments like that can hurt, but I’m learning to just remember how far I’ve come, feel pleased in myself and smile. I know the people who have been with me for any length of time in my long journey with IBD are proud of me, and that’s all that matters. My phenomenal family and my lovely and supportive friend, Sophie have been my rock through the bad times recently and not so recently. I have a great deal of time and love for them. Also, my support group that I run with my friend Meg, is just fab, everyone is so friendly and encouraging and we always manage to have a giggle!

If I don’t post before then, I hope 2013 brings you health, happiness and lots of good things! I’m sure hoping it is the year for me…about time please! ๐Ÿ™‚

Best wishes & seasons greetings!

Amy & Stacey Stoma x x

Hospital appointment with the dietitian

7 Dec

I went to see my dietitian yesterday at hospital. Been having a few issues with Stacey again with what has felt to be lots of trapped wind, pressure, spurts of watery output and dehydration. What set this off, I do not know, it could be a bug, something I ate, partial obstruction again, who knows? She’s been a bit better today after the initial feeling sick and horrible this morning.

One of the issues at the moment is that I can’t seem to put on weight no matter how hard I try. My appetite keeps changing as well. One day I can feel like eating loads then the next day I’m just not interested. There seems to be a few things that don’t agree with Stacey the best and give me some form of hassle, such as onions, lettuce, apple, Weetabix and green vegetables give me lots of wind which gets quite uncomfortable.

The dietitian was very helpful at my appointment and basically said that we have to try and get my eating habits into more of a regular routine. This is because my stoma needs to have a regular pattern so that it can get used to when it’s outputting and almost learn when to expect food etc, hopefully narrowing out some of my problems in the long run if I can manage to get some sort of routine. This is easier said than done, as I never feel like eating in a morning and if I try to it can make me feel quite sick, but I guess we have to try these things and have a good go at them before giving up if there’s a chance it might help me in the long run. My dietitian said ideally I should be having 3 meals a day and eating small things in between if I can so that Stacey can adapt to a routine and I guess, in a sense, so that my bowel doesn’t sleep for a lot of the day. By having breakfast, this means that my digestion process will be kicked off a lot earlier in the day, as opposed to leaving out breakfast and my digestive system and stoma not really having to bother with anything until 1 or 2pm.

I’ve been advised to keep away from green vegetables especially at the moment, and fruit with seeds, skins or pith, such as satsumas and strawberries, grapes and apples. This is because the skin and pith of the fruit and vegetables contains the main source of fibre. I’ve been advised to not have a high fibre diet, but that fruit in fruit juice in tins where the pith and skins have been removed should be fine.

Making sure I have plenty of fluids is another important matter. Ideally, because I have an ileostomy, I should be aiming to drink round about 2.5 litres a day…Mad this seems! This, however, is because of my body’s inability to reabsorb what I drink and get what it needs from it as opposed to a person who has their colon.

Typical digestive system of someone with a permanent ileostomy.(Credit to Convatec for this image)

Typical digestive system of someone with a permanent ileostomy (No colon or rectum etc)
(Credit to Convatec for this image)

That’s like drinking 1 and a quarter big bottles of cola…I just don’t see that it’s possible for me, that and the fact that I suspect I would be needing to empty my bladder all the time, and I’ve just escaped years spent on the toilet. My dietitian said this will be the case at first, but once my kidneys adjust to having a lot more fluids then it should calm down and I won’t need to go as often. The drinks I’ve been advised to have a lot of are things such as the flat sports drinks (Lucozade Sport and Powerade), squash, fizzy drinks, tea with sugar, as they provide extra calories especially. Sports drinks such as Powerade also have salt in them, which is vital for me as I need extra salt because of the fact that my colon is missing.so the nutrients I need need a lot more help being reabsorbed into my body as opposed to a person with their digestive system intact.

A lot of information to take in and a lot of trial and error and perseverance will be required. Even though I had my operation over a year ago, my dietitian said that my anatomy will still be adjusting to its new plumbing, so to persevere and give it time and try to get myself into a routine with my food and drink.

I hope you are all well. One more week left for me at University before I break up for Christmas, which will involve lots of work sadly. Going to visit my boyfriend for a while though so I am looking forward to that! ๐Ÿ™‚

Best wishes.

Amy & Stacey Stoma xx