Problems with ileostomy

cal79 Member Posts: 57
edited March 2014 in Colorectal Cancer #1
Hi, I am new to this discussion board. Thanks for all the good advice I have been reading so far! I am a 25 year old female and was diagnosed with rectal cancer 6 weeks ago. I had resection surgery 2 weeks ago, with a temporary loop ileostomy. Can anyone share their experience of getting out of hospital with an ileostomy, as I have found it extremely difficult and have found that I have become quite depressed. Thank you.


  • steved
    steved Member Posts: 834 Member
    Welcome to this board. I hope you find a lot of support and advise here. I was diagnosed with rectal cancer last year at 31 and had an anterior resection with temporary ileostomy placed. I still have it 9 months later as I had post op chemo for six months and kept the ileostomy to help me deal with the dairrahoea that chemo can cause. I am due to have it reversed next week.

    It does take a bit of getting used to but it does become very normal after a time. It is still early days for you and you initial worries and feelings of depression are very normal. It is a wierd thing to have your body altered in this way and it can affect how you view yourself which can take a bit of time to adjust to. After a period though I found I just bagan to ignore it. I haven't changed anything in my life as a result and haven't avoided doing anything because of it. I still swim and exercise as before and despite my anxieties it hasn't affected things between me and my wife.
    It did take a few months of experimenting to learn what foods upset me and which foods led to a better output. Changing it took a while to get used to too but became second nature after a bit.

    Overall I will almost miss the damn thing now that it si going to be reversed. I'll have to go back to sitting on cold toilet seats which will be wierd after all this time.
    Give yourself time to adapt- I am sure you are still adapting to the diagnosis and all yet alone the practicalities of the ileostomy. There are some great websites for ileostomists (which I a m usre some one else will post for you). Keep asking questions and feel free to email me if you have other questins you wnt answered.
    Let us know how you get on,
  • MJay
    MJay Member Posts: 132
    You found a great place to come. Another great place to try is This is a link to the United Ostomy Association and from there you will gather a wealth of info specifically relating to your ostomy.

    I was diagnosed stage 3 rectal cancer one year ago tomorrow. It was the beginning of the worst time of my life. I now am deemed cancer free and learning to live my life with my permanent colostomy. I am only 38 and the idea of having this bag for the next 50 years is sometimes overwhelming. Suffice it to say, I understand your feelings and where you are coming from.

    Steve was right. It does get easier. Give yourself time and feel free to adopt my motto "Baby steps."

  • 4law
    4law Member Posts: 110
    I had resection surgery for rectal cancer in Jan. with temp. loop ileostomy also. It was just reversed 2 weeks ago. I found that a good nurse who can help with supplies for a good fit can make all the diffrence in the world. I had problems with proper fit resulting in accidents re leaking -- a real nightmare -- but my new home nurse, who was living with a pemanent ostomy, was able to help me choose proper fitting supplies and reminded me not to let the ostomy rule me -- you must rule the osteomy. I know this may sound too simple, but keep in mind that this shall eventually pass and you are lucky enough that you only have a temporary ileostomy. One day at a time is the only sane way to deal with this.

    I know this may sound crazy, but there were times when I was dealing with diarreah after my reversal that I actually missed the pouch -- much easier on your bottom!

    Depressed? Of course you are -- who wouldn't be? I am Mr. Depression. But, you will learn that small steps -- a few steps forward, one or two backwards, etc., will result in overall improvement as time passes. You will find a lot of advice and positive vibes at this website -- keep your chin up -- you'll get through this.
  • taraHK
    taraHK Member Posts: 1,952 Member
    Hi. I was diagnosed with rectal cancer just over 2 years ago. I ended up with a permanent colostomy. I am sorry that you are experiencing some difficulties. MJay has already recommended the United Ostomy Association website, which I have found to be a wonderful source of information and support (like this place!). There is also a wonderful website maintained by "Shaz". I'm sorry I don't have the address to hand, but a search should find it quite easily. I realize that an ostomy is a huge adjustment. But I promise you that it gets easier. Were you seen by a stoma nurse (ET) while you were in the hospital? Do you have access to such a person now? They can be a huge help. Also, you may want to experiment a little with different supplies/systems -- that can make a difference. But most of all, remember that you are a beautiful, strong, gorgeous woman -- and nothing can change that. Finally (I promise!), I experienced some depression after all my treatment was finally finished, and I have come to learn that that is not uncommon. I ended up seeing a counsellor for a while, which was very helpful. I don't know if that is something that you might find helpful at some point.
    Please keep us posted. And all the best to you.
  • drmrgirl47
    drmrgirl47 Member Posts: 129
    I also had a temporary ileostomy. Yes, I was depressed and did suffer bouts of depression from time to time while I had it. But it's true; what alternative did we have, you kind of get used to it and just try to go on as usual. I personally did not have any problems with the bag (maybe 1 or 2 accidents due to trying to let some of the air out of the darn thing). I also swam and excercised. I did have to watch my diet though. That was the worst since I love to eat! As mentioned here, UOA was very informative. This board is excellent and has helped me a great deal. I used to speak to my doctors regarding depression, bags, whatever. Remember, we have all been through hell and are entitled to get depressed. Try to stay strong and focus on the good things. Peace
  • bubby1
    bubby1 Member Posts: 1
    I am a 50 year old male diagnoised with rectal cancer, Stage 3 in August 2004. I had 5 weeks of radiation and 5FU,followed by surgery Dec.2004. I had my Rectum removed and J Pouch constructed, as well as a temporary Ileostomy. I was suppose to have the takedown done in March but due to me needing 12 additional weeks of chemo, I just had it on April 27th.
    At first it was quite an issue hearing all this stuff about Cancer and what I had to go thru. Take one day at a time and it will make the world of difference. It is an inconvenience but it beats the alternative. I had a run of a couple of days where I followed the same procedures and still had leaks with the bag. Always carry an extra bag wherever you go.

    Now I am dealing with the recovery of the takedown. The first night I had several accidents while sleeping. After 2 weeks I am still trying to get adjusted. I take 1 Imodiam per day and that has helped out a bit. I like a cold beer now and than but it does not seem to help the situation. I am open to advice from anyone about the re-training issue.
    Hang in there, so far I think it has been worth it for me. Good luck.