self help

Hi . Good to hear that your operation is soon and you will be rid of the cancer. You may find that the output from the Ileostomy is quite runny compared to a Colostomy so you may need to take Imodium/loperamide to slow down the speed that the stools move through the Bowel. Be careful not to get dehydrated but not to drink too much either! It is recommended to follow a low fibre diet for the first few weeks - things like white bread, pasta, mash potato - not very healthy I’m afraid.

Im not sure how long you will have your ileostomy for but before the reversal it is important to strength the sphincter muscles around your anus by squeezing them and releasing - as if you were trying to hold wind in. There is a page in the booklet below that explains all this - your English is very good so I hope it will help

https://bowelcancerorguk.s3.amazonaws.com/New%20brand%20publications/31045_BCUK_Regaining_Bowel_Control_A5_24pp_AW_v3.pdf

I had my reversal 1 year ago and things are pretty normal now although a lot of beer is not recommended!

Hope everything goes well for you

Take care

Karen x

Hi ,

Welcome to the forum! It is a great community of people that I have learned so much from over the last year.

My situation is different from yours as I did not lose any of my rectum; 20cm of sigmoid colon was removed, which is the first part of the colon after the rectum. But there has been a definite change in bowel habits from before to after surgery. You will more directly notice the impact of what you eat and drink on your bowel movements. As Karen said, start with low fibre in the early days, and then slowly start to add more fibre to the diet. You can also keep a food diary to determine how different foods affect output.

And of course the sphincter exercises is highly recommended. And it is something you can do pretty soon after surgery (I used to do mine sitting at my desk at work!).

All the best for next week, and please let us know how it goes with the operation.

Kind regards,

Yolande

Thanks Karen and Itsy for your replies and recommendations.

I´ve had a year of sickness before my cancer was detected which resulted in malnutrition and thereby also muscle weakness, so I do have yet another "job" after the operation - to get fit again.

I remember the first days when I had been diagnosed, oblivious to what it really meant to have cancer in the colon and cancer treatments, I  felt strangely invincible,(maybe it was denial?) now getting to know the facts about the process has given me much fear and taken away much of the optimism I felt , I am though climbing the ladder again and your posts have given me hope because here is yet another area where I can help myself. We have some very advanced "cancer packages" here, but I´m forever gathering pieces to see the whole picture. 

Many Regards, Elisabeth

Hi Elisabeth

I wish you all the best for your surgery on 7 June.  It will definitely help if you can get yourself as fit as possible before the operation. I realise it is only a week away!

I don’t know your exact circumstances, but if you can, try to do core exercises as soon as possible afterwards. Here in the UK there is an easy programme called Core4 which you can look up. I had my major surgery nearly one year ago, followed by an ileostomy reversal in October 2018 but I was left with a permanent colostomy.  I went back to Pilates early this year and have just started doing some careful gym work with a personal trainer to improve my core strength as I am very concerned not to get a hernia! All this obviously depends on your general health and how you feel, but I definitely think there are things we can do to help ourselves.

Do come back when you’ve had your surgery with any other questions. Diet is another big matter, especially with an ileostomy and there are so many helpful tips on this site!

Best wishes

Liz x

Hi ,

Regarding the Core4 abdominal exercises that Camelializ mentioned, I've found this link: https://www.coloplastcare.com/en-GB/ostomy/lifestyle/sport-and-exercise/l2.7-4-great-abdominal-exercises/.

They also tell you how soon after surgery you can start the exercises; Two of them you can start within a few days, and the other two about 7-10 days after surgery.

For general fitness, the best thing I can recommend is walking. If Danish hospitals are anything like the one where I had my operations, the physiotherapists will come and drag you out of bed a couple of times each day and make you walk up and down the wards anyway! And if they don't, walk up and down the wards anyway as soon as you feel able. It will be a slow shuffle at first, but eventually you will feel your energy coming back and the walking will be easier. Also after discharge: Go for walks every day if the weather allows.

All the best,

Yolande

Thanks!

Hi Liz, may I ask why you had to have a permanent colostomi?

Could you have prevented or was it due to the odds we are up against.

How long time after a canceroperation do doctors normally reverse the stoma.

Many Regards, Elisabeth

Hi Elisabeth

if you click on my name in bold green you will go to my profile where I’ve posted details of my circumstances to save repeating them. 

It was always uncertain whether I would have managed without a bag as after the 2018 surgery I was left with no rectum. I think having the permanent colostomy is much more manageable than suffering from LARS which is “lower anterior resection syndrome” and basically means you have poor bowel control. 

If stoma reversal is possible you can wait anything from three months to over a year depending on your health and your health authority. 

LIz x