Home after emergency ileostomy op

Hi, my name is Sonja, I'm 44 and this is my second day at home after having an emergency ileostomy because my ulcerative colitis went nuts. I had a few complications after,  such as sleeping bowel and blockages but now I'm home I'm scared of every little twinge and frightened to sleep,  has anyone else gone through this and if so, how do you deal with it? 

9 Replies

  • Hi Sonja, you've had a huge shock to your system, having an ileostomy when you know it's coming is one thing, having one made as an emergency (high five!) is quite another. I've had an ileostomy since i was 23, and mine was also an emergency, though I was on the elective list, I just deteriorated very quickly and needed it sooner. I was in hospital for more than three weeks and I was terrified when I came home. I thought that every new feeling was a symptom of something awful. When we have any kind of crisis our adrenal systems go into overdrive and this makes it harder for us to settle back into a state of knowing what's a normal stress and what's a reason to panic. You get hyper alert to every feeling that your autonomic function would have you ignore. I found relaxation techniques helped me feel less on edge, but time is the real answer. Every day you manage at home without a complication or anything getting any worse is a day closer to it all becoming normal. In no time at all it will be so normal it's boring. You won't be checking your bag or feeling your tummy at all in a few weeks. You'll learn when you need to empty your bag and how to tell when you need to change it. Has your stomatherapy nurse spoken to you about morform sachets? They are a great help of your output is very liquid,  it is much easier to cope with a bag of gel than a bag of water. Keep trying different bags until you find what works best for you. I carried a complete change of clothes and all my stoma kit with me every time I left the house for the first six months. I was so frightened of a leak happening. It eventually happened, the world didn't end and I got more confident slowly. You will too but first you have to be kind to yourself and let yourself heal, it's a huge event for your body and brain to acclimatise to. It will take a while, but you will be so much better without UC and the drugs used to treat it. Please ask if you have any specific questions and I wish you all the very best. X

  • Thank you so much Nimmo. I figured out my issue with sleeping is that I'm frightened the bag will burst in my sleep but I have to accept that these things could happen and just deal with it when and if does happen. I am seeing my stoma nurse tomorrow as the stoma is taking it's time to heal, although op was only 3 weeks,  and I will ask about morform. Thank you again for helping not to feel like a crazy person. 

  • Dear Sonja , you can get a brolly sheet . I had a stoma and managed to have it reversed but with ongoing bowel problems with cancer also have real confidence issues . I was give the brolly sheet from my bag supplier but I'm ordering another one and they do give you a real sense of confidence if any accidents do happen . Anything that gives you that sense of security if and when an accident happens is great . I now am able to sleep at other people houses with my brolly sheet firmly in place !! They come in red or blue or yellow gingham so it doesnt feel quite so utility either . Confidence will come but totally empathize with your feelings . I reckon I didn't sleep properly for at least a fortnight scared of leaks and inadvertently turning in my sleep . You will be ok I promise and learn to deal with all that's going on . Time is what you need and an awareness of what makes extra wind or extra poo. It's different for everyone sothere's not even a point if me telling you my diet no-no's!! Stephxx 

  • Thanks Steph,  I am most definitely going to look into the brolly sheets. There is so much to learn and the best people to learn from are the ones who have gone through the same. I'm still on low residue diet at the moment and boy is it bland. I hope things work out for you. X

  • Yes the low residue is pretty awful . I expect you'll be on that for at least two weeks . Just slowly introducing different food types . I found after the surgery I was allergic to dairy . So watch that ...I didn't know about that but after looking on the Internet and seeing dairy intolerance I discovered that was the problem and it's been much more controllable after that being illiminated . 

      Have they suggested Imodium ? I was actually allergic to that too and find I have to take codeine instead . However as long as I eat a good breakfast and lunch  better not ( for me anyway) eating any later as you produce too much and that leaves you with less better sleep but it's so different for  everybody . Best of luck . ..don't get lonely though .. There loads of people out there with he same problems . Send if there's a local group ? It really does help ... I was given invaluable advice from a husband of a friend who was very open about it all . Really helpful . Xx 

  • I am quite lucky that I can still eat dairy and codeine used to block me up but took some yesterday and it gave me watery output for some reason. I have someone at work that has gone through exactly the same as me and she has also been fantastic help. Thank you again for your help. X

  • I think I have become immune and even having side affects with codiene after weeks of taking . I am experiencing nightmares and dizziness ( only very mild).i think I may now go the homeopath route and see if there's anything natural around as reading list of side effects from codiene seems to feel I'm heading down that route . Any thoughts ? 

  • Anytime Sonja . Xx 

  • Yes I have lay awake often since my ileostomy in fear of my pouch bursting and ending up in a mess. I had an haemorage and an emergency op-. I have had my stoma for about five months it takes some getting used to. Good luck.

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