New to Group - My story so far

FormerMember
FormerMember
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Hi everyone, 

I'm very new to all this. I was diagnosed with ovarian cancer late 2017 and underwent a hysterectomy late November 17. They found I had unknowingly suffered from endometriosis and everything was a sticky mess which resulted in them having to leave in my cervix, which was stuck to my bladder and at the time they said was healthy. 6 rounds of chemo later, all hair gone (apart from on my lower legs...weirdly) they gave me the all clear. Fast forward to Jan 2019, I ended up being admitted to hospital with a 'significant infection' and as I had stomach pain they did a CT scan of my abdomen. They found a lump growing on what was left of my cervix. The diagnosis was incurable but treatable reoccurance of ovarian cancer. Then out of the blue a doctor at the Royal London says he can operate, remove the tumour but the downside was that he would have to remove part of my bowel and I'd have a permanent stoma. Although pretty shocked by this, the promise that this would significantly increase my life expectancy was a no brainer. 

So here I am 5 weeks out of surgery with an ileostomy who goes by the name of Paul (for those of you who know the film of the same name, he's an alien, pretty rude and obnoxious but heals people....seemed like an appropriate name). I'm healing well and coping ok, I think, but having days of feeling like I can't quite cope with the outside world.

Reading all your posts have helped, although i do worry I'm not eating appropriately, as I'm pretty much eating as I did before, albeit smaller portions. Should I be changing my diet more? My output is pretty much gloopy most days with the odd liquid one in between. I've eaten mushrooms and sweetcorn and have not noticed any major problems. I am making sure I chew well.

If you've got this far, thanks for reading and sorry it's so long, but you know writing this all down has actually really helped.

I'm facing more chemo soon and am a bit concerned how this will affect my dear Paul. Although last chemo I had no problems in that area.

  • FormerMember
    FormerMember

    Hi Wilma780

    A warm welcome to the online community. Glad you’ve found your way here, although I wish you hadn’t needed to. 

    You have such an inspiring approach to your diagnosis and treatment. An inspiration to me and others for sure. 

    I’ve had my ileostomy for just over a year now post surgery for tumour removals. I’ve tried to take it in my stride and only worry if there’s a real reason to. 

    As for food, each of us has a different experience when eating and although there are guidelines on what is good and not so good foods to eat, it will all depend on how your body manages them. My stoma nurse told me to add things in gradually and see how my body copes and if it doesn’t work out then don’t give up, try something else and try it again at another point. I too eat mushrooms and sweetcorn and cabbage, the list goes on.  I’m careful but will not let it dictate what I can do  

    There are some foods I do avoid like very fibrous stuff, celery for example. But other than those I try most things.  Too much fruit or veg, lentils/ beans can give a thicker output that can cause pancaking. The chewing well is a must.  Eating little and often I find helps keep everything moving along nicely, regardless of what I’m having. Remember to drink plenty of fluids. As we absorb fluids through the colon back into the body we can get dehydrated easily without it. Up the salt intake by a teaspoon a day as well for the same reason, not absorbed well without the colon. 

    Key is to listen to your body and the advise the professionals give you. Everyone here will be glad to help with questions you have too. 

    I wish you all the very best and I hope your chemo goes well for you. 

    Best wishes