Like I mentioned in a previous post, I have had a few questions about stomas, ileotsomys and Margaret and I know it can be really confusing. Even I didn't fully understand everything until I had researched it really thoroughly and even now still come up with questions.
So I thought I would try and explain it all to you. I have used some photos to explain, I don't think any of them are gross but if you are a real wuss then you may not want to scroll down! There is a drawn diagram of the procedure, a picture of a healthy stoma, a stoma after surgery and some of the kit, including bags. No poo I promise!
I have said below each photo whether it is me or not, as some of them I have used as an example.
So I thought I would try and explain it all to you. I have used some photos to explain, I don't think any of them are gross but if you are a real wuss then you may not want to scroll down! There is a drawn diagram of the procedure, a picture of a healthy stoma, a stoma after surgery and some of the kit, including bags. No poo I promise!
I have said below each photo whether it is me or not, as some of them I have used as an example.
I have had a loop ileostomy.
This is the type of ostomy that can potentially be reversed. My surgeon pulled up a piece of my intestine through my tummy to the outside world. He then put a little rod under the loop and cut it in half; both ends then get sewn down leaving two openings. One is attached to active bowel connecting up to my mouth. The other end connects to the rest of my now un used intestines. The idea being that the un used section, which is where my Crohn's is, is rested, hopefully clearing up the active disease. The rod is taken out and you are left with one main opening that 'output' comes from and a smaller, flat opening that is not used.
This is the type of ostomy that can potentially be reversed. My surgeon pulled up a piece of my intestine through my tummy to the outside world. He then put a little rod under the loop and cut it in half; both ends then get sewn down leaving two openings. One is attached to active bowel connecting up to my mouth. The other end connects to the rest of my now un used intestines. The idea being that the un used section, which is where my Crohn's is, is rested, hopefully clearing up the active disease. The rod is taken out and you are left with one main opening that 'output' comes from and a smaller, flat opening that is not used.
Originally I thought that it was a little tube or something man made that stuck out of you, but it is my real intestine. The bit of intestine that sticks out is called a STOMA.
The nurse described it to me like the inside of your mouth, it is all the same from there, throughout your whole digestive system. That is why it is pink/red in colour and moist.
Not me
Here is an example of a bit of intestine sticking out of a tummy. All stomas are different sizes and shapes, so mine may not look like this when it is all healed but this is a nice clear example of what they look like.
After surgery they look more like this, this is a bit more like what mine currently looks like but once it is all healed it will be more like the one above. Not too pretty!
Not me
Due to it being a loop ileostomy, all of my intestines are still in there. If you have a permanent stoma fitted then that all gets removed.
Whilst you have a stoma, that is basically where you poo from, but instead it is called 'output'.
You have to wear a bag which is stuck on to the surrounding skin to catch all of the output, there are so many types of bags out there and every individual finds one that they get on with. The difference between the bags are the size, shape, where the odour filters are and whether they come in one or two parts, but they all do the same thing.
Most people wear one with a beige cover as starring at your poo all day is hardly pleasant! The bag sticks to your skin with a hole in the middle for your stoma to poke through, you have to cut the hole to the right size for your stoma, which isn't hard at all. Once the bag is on it is up to me how many times I change it, some people do it every day, some a few times a week, some twice a week. Every time you change the bag you have to clean the stoma, which is very weird! There are no nerve endings on the stoma as it is your intestine, so you cant feel it at all! You can strangely be quite rough with it and still have no feeling. Once you remove the bag you through it away.
You have to wear a bag which is stuck on to the surrounding skin to catch all of the output, there are so many types of bags out there and every individual finds one that they get on with. The difference between the bags are the size, shape, where the odour filters are and whether they come in one or two parts, but they all do the same thing.
Most people wear one with a beige cover as starring at your poo all day is hardly pleasant! The bag sticks to your skin with a hole in the middle for your stoma to poke through, you have to cut the hole to the right size for your stoma, which isn't hard at all. Once the bag is on it is up to me how many times I change it, some people do it every day, some a few times a week, some twice a week. Every time you change the bag you have to clean the stoma, which is very weird! There are no nerve endings on the stoma as it is your intestine, so you cant feel it at all! You can strangely be quite rough with it and still have no feeling. Once you remove the bag you through it away.
You have to empty the bag whenever it gets to a third/half full, with the type of bags I use this is done by undoing the bottom and emptying the output in to the toilet, before cleaning the end and doing it back up - the whole things takes 3-5 minutes.
When I left hospital I was sent home with a bag of goodies and supplies. I was given a number of different bags to try, soft cloths to clean it with, curved scissors to cut the bag to size, odour spray, adhesive remover and some other helpful tools for the job!
Now I have called my stoma Margaret, but I refer to the whole thing including the bag under the same name as it is a lot easier.
Alot of peoples reaction to me having Margaret is, "Oh but then you'll be better". But having a bag will not cure me of having Crohn's. I still have to take daily medication to stop it flaring up and I will still always have the disease. There are issues and problems that come with having a stoma and my Crohn's still needs to be kept at bay. It should however make my quality of life a lot better!
Alot of peoples reaction to me having Margaret is, "Oh but then you'll be better". But having a bag will not cure me of having Crohn's. I still have to take daily medication to stop it flaring up and I will still always have the disease. There are issues and problems that come with having a stoma and my Crohn's still needs to be kept at bay. It should however make my quality of life a lot better!
Having a stoma is not an outcome for everyone who has Crohn's; not by a long way. Some people have to have different types of surgery, such as a resection, and are then given a bag to allow the area to fully heal. Some people, like me, are given a bag to rest the flared area. Others are given a bag as an emergency.
I have been asked how I feel about having my bag seen by other people. I don't mind, I am happy with showing people if they want to see. As it is on my tummy and relatively flat it will be hidden by clothing most of the time. The main time that I will have to choose whether my bag is seen is when I go swimming or on a beach. I love a bikini as much as the next girl and this is something I have spent a bit of time thinking about. I have bought a gorgeous swimsuit to wear for times when I do not want the bag to be too obvious, there are also high waisted bikinis out there. Personally I do not feel too worried about people looking at my bag, if it can be seen, I am a bit more concerned about upsetting or grossing out people around me. However, I do think that if I am confident and wear my bag with pride, most people wouldn't even look twice. I think I am going to do and wear what I want, and what I feel comfortable and happy in, regardless of what others might think. But by doing this, I have to be prepared for some stares, questions or comments.
I hope that clears a few things up. If anybody has any other questions then please do ask away!
Lots of love!
XXX
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