What was the best thing you did for yo... - Living with a Stoma

Living with a Stoma

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What was the best thing you did for yourself to help your recover from an ileostomy surgery?

rddawn102 profile image

My mother had an ileostomy 3 weeks ago and is not doing well at all, in fact she is literally wasting away in front of us. The only walking she does is from recliner to bed to bathroom. She does not go walking as instructed, she does not bathe as instructed or do anything for that matter. From not bathing constantly the acidic stool lays on her skin and in her belly folds causing major skin erosion. I try to get her to do thingd simple like getting her own drink and she gets nasty. As much as I have reiterated what the dr has said about getting up and moving around, she just sits in the chair. I would appreciate any advice on how to help her deal with this and fight to get her life back.

16 Replies

Hi. I've had my ileostomy since 1998, following ulcerative colitis. I had 2 emergency of 5 hours each and was in hospital for 5 weeks. I couldn't eat a thing whilst in there. And when I got home, weighing in at just 7 stones, I was in the same position as your mum is now. After major surgery to the digestive system everything does shut down - everything! It is a big shock, not only physically but mentally too. All the advice is good but they haven't had the experience your mum has had. I felt so weak; I was breathless; I couldn't stand without aid and a few times I fell over and couln't get back up. I once was in an embarrassing situation. I had managed to get to the bathroom and into the bath. However, I couldn't get out again. I was stuck! My wife had to wait until the nurse came and they both lifted me out. It was about a month before I regained my appetite. I began by eating a Quaver snack... and then I ate more... and more... within a year I had crept up to 14 stones and had to join Slimming World as I was 4 stones overweight!!!! Your mum knows her body the best. Yes, please encourage, but please don't bully. She will do it. I would appreciate it if you would keep me updated with her progress and if you need any more help just email me at iansewell04@aol.com. I am in England, UK.

God bless you all.

All the best.


LEModel75 profile image
LEModel75 in reply to

What is the Quaver snack that helped gain weight ?

Thank you Ian for your response. I'm so worried about her she was doing so well in the hospital up and walking with color to her face and warmth in her body. Now that she's home she aged 10 years. I check to see if she is still breathing at night her color is pasty and she's always cold to the touch. She became so weak by just sitting and laying that chewing is an effort for her. The skin has eroded so badly by her wound the skin is weeping so the bag is constantly leaking and now there is questions arising concerning the reversal now.

Hello, I understand fully how your mum feels sweetheart. I had my illeostomy last July and the loss of energy was extreme afterwards for months... I was constantly tired and just wanted to sit. What you need to remember is that mum has had radical surgery only a few weeks ago, and her system is coming to terms with it on top of a loss of means of storing Iron etc and all of this takes time to come to terms with, physically s well as emotionally. She will begin to move around as and when she feels the energy to do so, PLEASE look out for depression as this can hit a patient after this type of surgery and have a word with your GP or stoma nurse if you are concerned. I am much better now but it has taken almost a year to get back to "normal".. I recently had the second part of the surgery, rectum etc removed, and it left me feeling drained again BUT I expected it and my family were not as worried as the first time. Nice to see someone worried enough to ask advice. Love to you and your mum.

May I add that I had an open wound so could not bath for 6 months so localised washing, I.E basins of water and a wash cloth were all I could use. If you can help mum keep her general cleanliness good, which I am sure you are doing, and make sure you are using the correct stoma powders etc to keep her stoma skin healthy, then this will encourage mum to feel better within herself and boost her both physically and emotionally into wanting to begin living again and have a good quality of life.3 weeks is NOTHING after this type of surgery and your doctor should not be putting that kind of preasure on her so soon. There is a book called " All bagged up" which you may enjoy reading, it will help you and mum understand what she is going through... Take care. Janey. xxx

Dawn. Janey's answers are so accurate. I wish you and your mum and your family well. All the best to you too, Janey.


Thank you all for all your input. She's still not doing well at all. Won't eat, walk within the house, learn to change her bag. She's lost about 45 lbs in 4 weeks, has no muscles, no appetite, extremely forgetful, and her demeanor has changed. She was always a cheerful person and very rarely cussed. Now she is extremely nasty to everyone and has a mouth like a truck driver. I had a social worker come to evaluate her and they are concerned as well.

Having read your story about your Mum as this is a very worrying time for both of you and you both need the help you can contact the Stoma Nurse for advise on your Mums condition that is what they are there for. You have have a Stoma Leaflet with a telephone number to contact them. Make sure you also get the support you need as this operation has had a big impact on you Mum which seems to have frightened her to lose the will to live I have had several friends who had the same operation they were 7stone in weight and they found it extremely hard to adjust to a different way of life because it is life changing and the body goes into shock it can take several years to come to terms and accept new life changes unfortunately your Mum will take her frustration out on you that is why you need support. Please speak to her GP and Stoma Nurse and ask for support for yourself.

Hope things improve for you both soon

I had a double ileostomy in 2012 after emergency hospital admission...what a shock to wake up with 2 bags....no warning this could be the outcome. Normal weight 9 1/2 to 10 St....dropped to 6 St......a weeks hospital to boost my input of calories then home to eat cheese,cream,sugary products,anything to put weight on. Got to 8st then reversal of the 1st bag in May 2013...in time after this my sister and I nursed our lovely mum till her peaceful passing in November 2013. had been diagnosed with copd in 2008 ....all the stress of the previous plus more personal trauma has brought this back with a vengeance. Now have O2 15/24 in house and further reversal or removal even of the hernia attached is not an option. Still coming to terms with this and very down. Try tempting your mum with favourite foods don't think healthy at this stage too much....hope she starts to rally soon. Love,peace and light.xx

I had an ileostomy 18 months ago and at first it was difficult. But fortunately I was fed a lot of bone soup ( beef or pork boiled until the meat had effectively disintegrated ). It gave me the strength without the meat and other easy to digest things a little at a time. Gradually I got stronger and eat more normal diet. After six months of that I was able to have reversal and now one year later I am fully recovered doing everything as two years ago. I am seventy years old and swim for half an hour every morning before getting on with life.

May I ask why you had ileostomy and was it planned or emergency

I was in hospital three months after an emergency ileostomy I could barely move everything had to be done for me so I can imagin the difficulty your mum is having please be patient and give her time rddawn I got better she will too.

she needs to try and go for slow walks around the house like i did two yrs ago and it does help, and the bathing she doesn't have to have one every day as long she has one ever third or fourth day. Is she changing the bag every day?

try her on sustagen for her to get her appetite back that helped me and eat alot of vegeis and drink lots of water.

When I first had my permanent stoma my other half constantly complained about how much it smelled, how awful I made the house smell and how the smell made them feel sick. Got divorced, no more complaining and so now much easier to manage my stoma, that sorted that problem out.

Really sorry to hear about your mother. I had my operation 7+ months ago and went through the same thing she is going through. The individuals telling me what to do didn't have the operation, so how were they to know what I should be doing? It seems like advice does more harm than good. One day it clicks in the individual's mind to stop listening and just go ahead and do what they want to do. I hope she can get through this.

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