6 weeks to think if I want this stoma operation

Hi Loretta,

I had my operation last February as an emergency admission so I had no choice. The decision must be yours alone, but get all the facts before you decide. It was an inconvenience at first but you get used to it eventually. I had fantastic support from medical staff and the stoma team and surgeons. Luckily I have just had mine reversed and now getting back to normal. It is not the end of the world. Wishing you all the best, Peter.

Hi Peter,

I'm so glad that you've been able to reverse yours. Mine of course will be permanent. Would you have been happy to keep it permanently? My quality of living at the minute is really bad, I've stopped socializing with friends, I have classes to take my daughter to for early development like toddler massage and yoga, aswell as a creche. None of which I'm able to do. I will either spoil myself on the way too the appointment, at the appointment or on the way home. It really gets me down, it happens without warning sometimes, no pain just an "oh god - its happening" moment. I'm sick of it. I honestly duno how my mental state will be after getting the bag fitted. I could recluse more which I dont want to happen. What sort of information should I be asking for Peter? 

Hi . From reading your post I think a stoma would improve your life no end. I had one for 15 months after Bowel cancer treatment and I’ve since had it reversed. My friend however has a permanent one and she’s fine with it and has been on cruises and New York without any problems - in fact she asked the airline if she could have a seat near the toilets due to her stoma and they gave her a ‘sunflower’ lanyard so she was fast-tracked everywhere - she felt like royalty! 

You may want to ask the surgeon if you would be having an Ileostomy or a Colostomy. They are principally the same but one comes from the lower Bowel and one from the upper - the output from the Ileostomy tends to be a bit looser but you can take loperamide if this is a problem. Would the bag be permanent or is there a chance that your problems would settle down if the Bowel was given a rest for a year? 

Clothing wise I wore exactly the same as I’d always worn but just wore a little strappy top under my clothes to make sure the bag was fully covered if I stretched. If you didn’t know that I had a bag then you would have been none the wiser. Emptying the bag was a 2 minute job and I had a key for the disabled toilets as they are roomier with a sink to hand. Changing the bag takes a bit longer but quickly becomes second nature.

I don’t know how long the op would take but recovery wise they recommend not lifting anything heavier than half a kettle of water or driving for at least 5 weeks. You may have to follow quite a plain diet until things settle down but you soon get used to how different foods affect you and when the best time is to change your bag.

Could you perhaps arrange a chat with your local stoma team? They gave me loads of information and even a bag to stick on and practice with.

Your days sound to be so restricted by your problems that a bag could be life-changing for you. Please let us know how you get on. This board is full of help and information and there is nothing that ourvresident expert Ian aka wouldn’t be able to help you with.

Take care

Karen x

Hi Loretta and welcome to the online community having lived with indeterminate ulcerative colitis for so many years must have been a nightmare and with the diagnosis being indeterminate has added to the problems as it is difficult for the actual diagnosis to be conclusive.

The next step of having an ileostomy formed should be see you having a new lease of life and certainly meaningful conversations with your consultant should be high on your agenda with a view to establishing what you would expect and what can be achieved with having a stoma.

There are 2 main types of ileostomy:

loop ileostomy – where a loop of small intestine is pulled out through a cut (incision) in your abdomen, before being opened up and stitched to the skin to form a stoma.

end ileostomy – where the ileum is separated from the colon and is brought out through the abdomen to form a stoma

Alternatively, it's sometimes possible for an internal pouch to be created that's connected to your anus (ileo-anal pouch).

This means there's no stoma and stools are passed out of your back passage in a similar way to normal.

End ileostomies and ileo-anal pouches are usually permanent. Loop ileostomies are usually intended to be temporary and can be reversed during an operation at a later date.

If you have a temporary ileostomy this is formed to let the remainder of the bowel to settle down and make sure all the disease has been removed.

In some cases, a section of your colon may need to be diverted out of your tummy (abdomen). This is known as a colostomy, rather than an ileostomy.

This is major surgery and recovery time varies as we are all different and you will be able to get back to doing something in a few weeks building up to undertaking most normal activities in about 8 weeks, although you'll often be advised to avoid more strenuous activities for about 3 months.

It is important to listen to your body.

Having No 7 in the Bristol Stool chart meaning that you have watery output all the time is very similar to having a ileostomy, where the output should be between watery and porridge consistency but your output will be collected in your stoma pouch and you can have immodium prescribed to thicken it up. Having a pouch will see you being able to leave the house with confidence knowing that, whilst your output could still be constant, everything will caught in your pouch until you can get to a toilet to empty your bag in comfort.

The list of activities that ostomates can do continues to grow and you should be able to do all the things that you enjoyed previously and possibly start some new ones within a few months. The next time you are out why not play our game called spot the person with a stoma pouch, believe me I think you'll find it's almost impossible.

You will have lots of questions in the coming weeks and months and you have found an ideal place to come to to ask them, we believe in this group that there is no such thing as a stupid question if you have something on your mind come on here and ask it, I guarantee that at least one of us will have the answer and you can move on. We are very supportive of each other and will always share our experiences and give you advice and many of us are about 7 days of the week so you are never alone, even if you just want to chat. We are all at different parts of this journey so we know what you are going through and will walk beside you in every step you take.

If I can be of anymore help please don't hesitate to contact me here or on private message at anytime.

Ian

Hi Karen, 

I already have the lanyard from the airport, its available to everyone with a disability. No need for a doctors note just show your passport when your talking to special assistance. 

My operation will be a permanent ileostomy, removing all the large intestine and bringing out my small. But my disease is left with a question mark over it, they dont really know if its crohns or ulcerative colitis. If its crohns and I go undiagnosed it may come back in my small intestine and I'd need another surgery.  I've found a girl in my town by chance, that has had one for 10 years and has had the option to reverse it but she said no. She has went on to have her 2nd and 3rd children with the bag and said it has really been really beneficial to her. I think this has helped to point me in the right direction. Il request another colonoscopy to determine which disease I have and go from there. What's another camera scope when you've had it done numerous times before. 

Thanks for all the advise,