FAQs

Crohn’s and Colitis UK is a good starting point with lots of ways to interact with them and gain information from online resources, forums and membership options. 

Colostomy UK provide information and support for people living with a stoma.

Coloplast have some really useful online resources about preparing for a stoma and life with a stoma, including some helpful diagrams for someone like me who had Crohn's but no real idea about what a stoma was until I needed one!

Frequently asked questions

I have put these together based on my experience of someone with Crohn's who has an ileostomy...I'm in no way an expert but hopefully some of these may help...

What advice would you give someone who needs stoma surgery or is new to having a stoma?

I personally wanted to try every medication available to prolong the need for surgery, as a pan-proctocolectomy is basically 'end' surgery for someone with Crohn's and there is no going back! I was very positive about the range of medications that were available and put my faith in modern medicine that one of them would help aid my symptoms. However, there came a time when my symptoms were too unbearable and my quality of life had diminished to a point where surgery had to happen.

I didn't see surgery as a sign of failure or something I had any control over and I just viewed a stoma and wearing a bag as something that for me had to happen.

I would say not to be scared about having a stoma or embarrassed as you are having the procedure to give you a better quality of life and you will still be able to live life to the full. My stoma is just one small part of my body and wearing a bag is a small part of my life and who I am, it does not control or own me and I have a lot to offer as an individual than being 'someone with a bag' to pity.

I have learnt I don't have to give up things I love, just adapt slightly...I haven't given up apples but I peel them, chop them and stew them slightly as skins can be a pain for ostomates to digest. 

When I change my bag and look down at my stoma, I look at it more in wonder than in disgust that the surgical techniques exist to give someone who had my symptoms a chance of a healthy and active life. It's literally part of my wet bowel sitting outside my body happily functioning away and that amazes me. I'm able to put a bag over it to collect the output and protect my skin from the output and do everything I used to do, well everything I did before my symptoms were so bad I had to stop doing certain things. My stoma has literally given me my life back and there isn't a day that goes by when I am not grateful for this.

What medication did you take for Crohn's? 

For long periods of time I took Loperamide to slow down bowel movements and Azathioprine to control my symptoms. If I had a flare up I would use Pentasa Mesalazine suppositories or Prednisoline steroids (sometimes oral and sometimes via IV if admitted to hospital.) Before I went on to try biological drugs, I tried Colifoam steroid enemas. 

The biological drugs I tried were Infliximab (reacted to this on the second dose and could not continue with) and Vedolizumab (Entyvio - had five doses after Adalimumab had no real affect) both via IV and Adalimumab (Humira) which I administered at home. 

What surgery have you had?

I had a loop ileostomy formed in July 2015 with the aim to use biological drugs to get my colon into a healthier state and have the stoma reversed. This couldn't be done and I went on to have a pan-proctocolectomy in March 2017. You can find out more about my surgery here.

What stoma bag do you use?

I currently use SenSura Mio convex drainable one piece bag by Coloplast. I wear a convex bag at the moment as there is a little dip around my stoma and the convexity of the bag fills this dip and prevents leaks. I wear a drainable bag as I have an ileostomy which produces output throughout the day so I need to empty my bag whilst I am out and about. There are 3 levels of convexity in the SenSura Mio range and I wear soft which is the lowest level. When I first had my operation I was wearing deep convex bags and still getting leaks, I then moved to the next level which was light convex and have now moved to soft so this really does show that stomas do change over time after surgery. I was really concerned when I was having leaks with the deep convex bags as I was using a seal as well and didn't know what other options were available if this wasn't working.

I don't have my bags pre-cut as my stoma can be a slightly different size each time I change my bag so I just cut a bag each time. This is a free service that most delivery companies will provide in the UK so is worth looking into if you don't want to cut the bags yourself and are happy that your stoma stays pretty much the same size!

I remember being desperate to use the SenSura Mio bags when I had a loop ileostomy but my stoma and mucus fistula were huge and sitting on top of a hernia and the advised cutting area on the SenSura Mio bags just wasn't big enough and I would have risked leaks. When my stoma nurse gave me some as samples with lots of other bags I remember commenting that the SenSura Mio bags were like something NASA had produced compared to other materials/types of bags that were available. I don't feel like I have the bag on my skin, I like the feel of the material when I have to empty my bag and this is important as I do this throughout the day and there is a little flap to lift up to see my stoma which I like to have if I feel I need to check on it. The bag is a perfect size for my needs as some I have tried were huge and I don't really feel there's any benefit for me as output just collects in the base and makes the bag pull down away from your body so I prefer the Mio size that I can just routinely empty. One of the main reasons I use this bag is the opening, which is important to someone with an ileostomy who wants a drainable bag that they can empty. The opening of these bags is very secure, it tucks into the base of the bag and it stays there, unlike other bags I tried, so you don't get a little 'tail' sticking out that digs into your thigh. When you pull the opening out from the bag, there are two velcro pads that you unpeel and then fold down the opening, you can then push it from both sides to create a funnel to then push output down through. This opening is very secure and leaves me feeling confident that no output is going to come out, it's also easy to use and seems to stay a lot cleaner than some other bags I tried where I found I was getting output all over the opening and having to clean it.

These bags are grey and have been met with lots of comments from people asking why they're not a beige colour or white so they are less visible under most clothes. I know that when these bags were being designed, this was taken into consideration and grey was actually chosen because it shows up under lighter fabrics less than something like beige, a pinkey nude or white.

How often do you change your bag?

I change my bag daily and have trialled other bags to see if I could extend the wear time but either the baseplate starts to wear around the stoma due to output sitting on it and leaving this would risk leaks or the part of the baseplate that adheres to my skin starts to peel away.

Do you shower or bath without your bag?

You can absolutely do this and it is encouraged so you can properly clean the area around the stoma. I don't shower without a bag on as much as I should do but when I do I use a Simple shower gel that doesn't have lots of ingredients added to it that will irritate the skin or form a soapy layer that then means a bag will be difficult to adhere to. When I clean my stoma I use a Simple soap with dry wipes that I have wetted.

How will I know what bag to use?

If you are reading this as a new ostomate or someone about to have surgery, I would just say that finding a stoma bag really is trial and error. You might try one and like that and stay with that bag or it might take ten bags until you find the one you feel comfortable and confident with. Don't feel disheartened if you are having leaks or can't get the baseplate to stick because as well as lots of types of bags there are lots of accessories to use to help prevent issues with stoma care. Companies want you to use their products so they will be helpful in sending out samples to you. Some websites have a facility to request samples or you can call them to chat through with a representative what your needs are. When I have trialled bags I have tried to do everything I would normally do in them, so test them in the shower, in the bath if you like baths, swimming and see how you get on with them for at least a few days.

What stoma accessory products could you not live without?

I use Brava (a Coloplast brand) adhesive remover spray to help get the baseplate off when I change a bag and I don't find it irritates my skin. It works like an aerosol can and I only need a little amount to start peeling the bag off.

On a daily basis I always use Brava elastic barrier strips on top of my baseplate. So I put my bag onto the skin using the baseplate that's attached to it and then I stick two of the curved strips around the baseplate. I find that the baseplate starts to peel away within 24 hours if I don't do this either due to exercising, swimming or showering.

I also use Convatec stomahesive paste directly around my stoma before I put my bag on. This comes in a tube like toothpaste and is a beige sort of chalky paste. It is incredibly moldable but also very sticky so I squeeze a circle all the way round my stoma and then I push it into place with something wet like a wet wipe or a dry wipe I have wet so that I can move the paste without it getting stuck to my hands and coming away from the skin. This paste is an alternative to a seal or barrier ring and helps prevent leaks. As I change my bag every 24 hours I find some of the paste can still be stuck to my skin and a little hard to remove, this would be reassuring for someone who kept bags on for more than 24 hours as it shows it's clearly doing its job!

I wear a little belt with my bag that attaches onto hooks at the side (that's what those hooks are for!) This is because I wear a convex bag and the belt helps to pull the bag into your body and ensure the convex area is filling the dip around your stoma. I honestly can't feel the belt is on, it needs to be tight enough to provide support but not so tight it is uncomfortable or pulling the bag too much. The belt is really just an elasticated strap that you can adjust and it hooks onto the bag. I wear a white one from Peak Medical made by Eurotec and I wear this all through the day and night, basically all the time unless I am swimming.

I don't use this product daily but if I have any wet/sore areas around the stoma I put some Convatec Orahesive powder on them and it helps to protect the area and dry it up.

Do you wear any support wear? 

As I have had a hernia repaired and now have a second permanent stoma, I need to support my abdomen and the area around the stoma particularly when exercising. I am at a heightened risk of a hernia forming and do what I can to prevent this. 

Everyday support wear

I wear a tube belt from Suportx when I am at work or generally out and about and doing something other than just sitting for long periods of time. When I get home I change to a lower level support band from Comfizz unless I am doing something like cleaning or walking the dog. 

Exercising support wear 
If I am doing anything from walking the dog to jogging or something of higher intensity like circuits or boxercise, I wear a heavier duty support belt from Suportx

I don’t wear anything else differently to before my surgeries other than adding support wear. When exercising I am able to wear leggings that are fitted and with a high waist just as I used to. 

Support whilst swimming
Swimming is a great exercise for people with a stoma as the water naturally supports the abdomen area and I, like most ostomates, don’t wear any support in the pool or sea. I do find my bag can start to peel off if I wear a bikini and am doing high intensity exercise like aqua aerobics so I wear a swimsuit. 

How did you get fitted for support wear?
I was able to qualify for a certain number of support garments through my GP as I live in England and researched a few products that were recommended to me by my stoma nurse. I had a look at websites and also visited a few events where suppliers were exhibiting. I then arranged for a company representative to visit me for a fitting, most companies are very accommodating and can visit you at home or at work. My GP was then able to authorise a support wear garment to be ordered.

What delivery company do you use? 

I currently use Charter to deliver my stoma items. I haven't had any issues with them and they send items out efficiently when they have the prescription as confirmation.