So in aid of raising awareness and feeding people’s curiosity I asked a lot of people to ask me questions about living with an ileostomy and boy! I wasn’t disappointed! Thank you to everyone that pitched in, hopefully it helped!
What is an ileostomy? Is it to do with removing a part of the intestines?
An ileostomy is where they bring your intestine outside of stomach wall and stitch it so it creates a spout. It can be used to allow the bowels a break or a chance to heal if a jpouch has been created (large bowel removed and small bowel moved down and attached to rectum) in this case it can be reversed.
How often do you change it?
I personally choose to change mine every 2 days if possible. But generally it starts to itch on me just after 48hrs. Although the manufacturers say they can last 72hrs. I only keep it on that long if I’ve been advised by the stoma nurses.
Do you still Poo?
Yes I do still poo! But it collects in the bag, I don’t go to the toilet in the usual way. Although unless you know I have a bag/I tell you I’m emptying it you would know any different.
Is there any sensation in the stoma?
No not really, or at least I definitely don’t think so.
Do you still get the feeling like you need to go?
Not anymore, the first few days it was the most odd sensation well more like a pressure but I knew there wasn’t anything there.
Can you feel it when it fills up?
Oh my God YES! When it’s a really thick output I feel the spout stretching and pushing it out. I can feel it when it’s really watery too it kind of splutters out and then you can hear it.
Why exactly did you have to have it?
I had it because my previous surgery for removing my large bowel because of Ulcerative Colitis had failed. I developed pouchitis basically Colitis but in the pouch. I didn’t want medication so chose surgery.
Does it hurt?
No it doesn’t hurt unless the skin becomes sore as the acid in the waste breaks it down.
Did it get attached straight away after the surgery?
Yes, the bag is put on straight away after surgery to collect the output.
What happens if it gets pulled/caught?
I would probably get a shock because it would be the bag not the stoma and the large amount of skin that is attached to the wafer (the sticky bit) feels like a plaster pulling.
Do you need further surgery?
Hopefully not! But if I was unlucky to get a serious blockage or a hernia it maybe needed.
Where is it hooked up too?
The bag is attached to the skin on my stomach. The stoma is part of my intestine which is then like everyone else’s.
Does it hold just poo? Or wee as well?
Just poo! However a urostomy is a stoma from the bladder and is from the outside similar to an ileostomy as in it needs a bag.
How much of your bowel have they removed?
My large bowel was removed in 2008 for my first surgery. Then my small bowel and my rectum was removed to fit the ileostomy.
Can it be removed or is it forever?
Some people can have their’s reversed (if they have a jpouch or its to give the bowel a rest. That is a loop ileostomy) mine is permanent it’s an end ileostomy.
How long did it take for the specialist to decide it was the best decision going forward?
Well I decided on the surgery in October ’15 and after a few upsetting phonecalls to the surgical secretary (and a snotty email from my GP to her!) I saw the surgeon in January ’16 and he was a fucking wanker. Sorry for the language but he was. I was admitted in the February and saw a different surgeon and on call doctors who all agreed I was ill and needed surgery but had to do tests to prove that the end ileostomy was the right method and not a loop ileostomy. By the March they had enough evidence and told me by the end of April I would have had the surgery.
Did you have open surgery or keyhole?
For my ileo anal (jpouch) pouch surgery it was open. I have a scar from about 2inches above my belly button right down to 2 inches on my pubic bone. That scar split open twice due to infections. My removal of the pouch and the stoma being created was all done keyhole. I think I have 2 maybe 3 little scars around the site.
Did you have a cesarean because of your operation?
My first operation yes. Someone once advised (probably my midwife)that if the labour was to exceed 4hours it could put undue stress on my pouch. So I just opted for an elective cesarean.
Did you have a bag before you had Ra-Ra or is this your first time?
No this is the first time I have ever had a stoma of any kind (there is three types ileostomy/colostomy/urostomy)
Will it affect you having more children?
It shouldn’t do. There are plenty of women how get pregnant successfully and go full term with a ileostomy. In fact a gastroenterologist last year told me once the inflammation is gone it maybe easier for me to conceive.
You mentioned about scar tissue when you had Ra-Ra is that from your surgery to help with your bag or another surgery?
The scar tissue is from the surgery which created my pouch. I had a lot of scar tissue. The obstetrician had to remove alot before being able to remove Ra-Ra from my womb. Then my surgeon took a load more out when he did the last surgery. I was receiving a LOT of pain in my left hand side which was due to the adhesions. Some of that pain may return but it is manageable.
What is the NHS aftercare like?
With the first surgery it was awful I asked to be transferred surgeons. In fact the surgeon who gave me the GOOD aftercare became my surgeon this time around and I super appreciate everything he and his team have done for me. The stoma nurses I have are also fantastic, I can ring or text them and they will get back in touch straight away. Both have juggled things around to see me at short notice. I am very lucky to have them.
Do you see the GP/specialists often?
Erm not really. I’ve seen my surgeon once since being discharged and I think I see him again on Monday. My GP I just see as and when.
Do they provide new bags? Are they on prescription?
The stoma nurses send you home with a few boxes that don’t have the hole cut to a specific size so that as your stoma shrinks and settles you don’t end up with a surplus. I ended up getting more from them as I needed a different type of bag. I get convex bags as my stoma spout has settled facing down. Once your stoma is settled you get them on prescription if your ostomy is a permanent fixture. In my prescription I get free disposable bags, dry wipes, adhesive remover and barrier spray.
Is there many fashion accessories for bags?
There are plenty of people who design covers for the bags. In different materials/patterns. Right now I don’t feel I need them but plenty of people do. The one I see alot on Facebook is JJ’s Stoma Support Wear and Accessories. Also vanilla blush do gorgeous underwear (some you can get on prescription) and swimwear.
Is there a support group?
There are usually local support groups for people with stomas but I don’t go to them. I have to admit I prefer the online community. There is loads of people on Instagram and twitter. The Chrons and Colitis UK page is really good you can become a member of the charity and they have lots of information and events. I also use osto-MY FASHION which is a fashion group for ladies with stomas. Everyone there is really kind and helpful.
Have you met others with bags?
I’ve spoken to lots but only met one. My Partner in Crime Louise. I met her back in February, she let me ask her questions, look at her stoma and just generally bug her. I absolutely love her to death. How she has remained strong and kept a smile on her face regardless of tears is the main reason she is and always will be an inspiration to me.
Will you always have to follow a special diet?
Not really a low residue is suggested in the first 6 weeks so that you stoma can adjust and you can prevent blockages. I’ve already started eating normally because I just couldn’t take it!
Does it smell?
The stoma itself nope, but if it did I would be worried as that’s a bad sign of necrosis (the flesh dying) The output yes it does alot it can be quite embarrassing. But then again show me someone whose crap doesn’t stink? Depending on what I’ve eaten determines how strong the smell is.
Does it pass through normally?
Not in the same way it does for you as the large bowel is the wringer of the body. So it can be quite loose although how much/little you drink or the sort of foods you eat can change the consistency.
Is it heavy?
When it fills up yeah it can feel quite heavy. Especially if it starts to pull tight on the skin.
Did you have any problems when it was first fitted?
I suffered mild dehydration as I became scared of drinking because I wasn’t eating enough, which meant the ratio wasn’t quite right. I also had heavy bleeding from my back passage but when you have your butt sewn up except a small opening (barbie butt as it’s referred to by people that have it) and the drainage tube removed the excess blood has to go somewhere. But it wasn’t severe thankfully even though at the time if felt like it! But since then it has just been when the spout dropped which caused the waste to get onto my skin and started to break it down. Oh and a couple of granulomas, in the grand scheme of things I came out of this rather well I would say.
Does it affect you at all having sex?
Not really. 00Steve has said the bag has scratched him a couple of times where the opening folds shut. I responded with yeah how do you think I feel? (I have to have it angled away from my leg a bit and have something between my skin and the bag as a general rule) he just looked at me and said “awful”. Whilst having sex the front of my stomach but on the inside aches. I know this will pass when I’m fully healed. But it hasn’t stopped him wanting me and that was a huge factor in wether to get it or not for me.
Can you have it not attached for awhile like to swim or take a bath?
Only if I wanted to bathe in my own crap! Haha it has a bit of a mind of its own and can poop at anytime. I take it off now and then in the shower when it’s relatively inactive.
Was the Ulcerative Colitis caused by Chrons?
This if I’m honest is a question I’ve had a lot over the years and I fucking hate it! Haha but only because awareness is so limited. Chrons and Colitis are two completely separate bowel diseases. Colitis is area specific whereas Chrons can attack anywhere from your mouth to your rectum and all at once. You can even be really unlucky and have both. But no one does not cause the other.
Have you thought of making fashion bits to go with the bags?
Not really but I’m not very crafty even though I try and I’m probably the least fashionable person I know.
Could the bag burst?
The bags are pretty robust so I think you would be having to use some force if it were to happen. But the adhesive can pop away from the skin which would cause leaks.
Has it leaked/fallen off?
It’s never fallen off but it has leaked quite a few times. But there is always a reason why it leaks. The first time was because I was wearing a normal bag when I needed convex because my spout had dropped. Then everytime after that has been due to an excessive build up of gas and it’s forced it’s way out. I always thought I would cry when it happened but the only time I did was because I had early dehydration and I was sat outside xray with no spare clothes. My stoma nurse Judith helped me get through that better than I could have myself.
Does the NHS give you training on caring for it?
They give you plenty of information leaflets. The stoma nurses go through everything as often as you need it and let you ask questions.
Have you given it a name?
Oh hell no! I see that alot of people do this and I really don’t understand why? It actually creeps me out a little. The way I see it is its still a part of me. Although 00Steve said I always refer to it in the third person. I don’t mind that other people name theirs it I guess must be a way of adjusting and fair play to them, but I won’t be joining in on that thanks. I asked my Partner in crime that once and her face was just perfect I knew she felt the same way as me!