Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Four years ago I was discharged from the hospital without a third of my GI track. The sigmoid was gone and most of my ileum had been removed because my pelvis had received radiation in the 80's. Dead and scar tissue had been removed from the GI track that had been radiated.

I now live with a forever ostomy. Without the ileum my diet means limited nuts, seeds and no skins. Fruits have to be peeled, so I eat canned or dried. Tomatoes need to be peeled and seeded. Beans are iffy, corn has to be white young corn. No corn on the cob or yellow corn, my body cannot process it. Animal flesh is hard to process, I can do eggs and yogurt. Yogurt is my go to food, without the added fruits. If I want fruit I will add it myself, without the sugar. With an ileostomy foods are not fully processed so I take pills or shots to make sure I get the vitamins and minerals I need.

If your husband wants to loose weight the best way is not a diet but a forever lifestyle. It will be heavy in fruits and vegetables, low in fat, sugar, and sodium. Pasta and animal protein are limited to a small portion of your intake. Beef should be limited to once a week or every other week, fish, chicken or turkey can fill in the rest of the week.

When my urine is strong that means I am not getting enough water. Water should always be our beverage of choice, minimum 8-8oz glasses each day. Everything else has something added to it that is not good for the body.

If you can accept that you have a new lifestyle and it will be forever, your body will be happy. If your body is happy you will be happy. Good luck.

mlmcg

My husband was diagnosed with bladder cancer in 10/2011. He had neoadjuvant chemo for several months, his major surgery including formation of the ileal conduit for ostomy in spring 2012. Lots of complications, and ureter revision surgery in summer 2013. He’s been on the kidney transplant list for a couple years now, though is currently inactive on the list because his GFR is at 24...higher than when he was first places on the list.

Having problems with my ceocomy tube

Hi! I had a bowel resection and colostomy on September 21 after two weeks of hospitalization and antibiotics. I was otherwise healthy with no medical history, and then on September 8 I had severe cramping, felt a shift, got a wave of cold from head to toe and started sweating profusely. Turns it I had diverticulitis, and probably diverticulosis for the past couple of years.

Anyway, as frustrating as being in hospital for 20 days was, things went relatively well considering the various complications I faced, and I was very well taken care of by a wonderful team of nurses.

Since I’ve been home, nearly a week, it seems that nothing has gone right.

I have a crease and my appliance leaks from there. I just met with my ostomy nurse yesterday and she put on a convex wafer for me. It’s holding up much better, but there is a bit of poop in my belly button. At least it’s not flowing out like with the flat wafers. I’m low on supplies, so I’ll wait until this evening to decide if it needs changing very badly.

On Sunday my surgical incision began weeping quite a lot, and I went to the ER where I was prescribed antibiotics.

Yesterday I had my first follow up with my surgeon. He took my staples out. A few hours later my incision began to separate, and it was back to the ER. From the time we noticed the separation to when I was treated it opened up significantly more. They packed it and put steri strips across as well as a sticky gauze dressing. I have an appointment tonight with the nurse care clinic for them to change out the dressings if need be. I suspect they will need to be as the weeping is soaking through the dressing.

My surgeon plans for me to have a new vacuum dressing applied in the next couple of days. I had one in hospital. He says this one will be a little higher quality so it’ll be less bothersome.

Anyway, I’m pretty frustrated overall. I’ve been in fairly good spirits the whole time, but near the end at the hospital and now at home I think my brain is catching up with what’s been happening, and I’m having a tough time. I’m not much of a crier or a complainer, but I’m so frustrated and a bit scared. And frustrated for my fiancée who has taken on so much and is just as helpless as I am with how to deal with all this new medical stuff. She’s so stressed. We both are.

I already see a psychiatrist regularly, so I do have that support. It’s just that this is the first time ever in my life that I’ve not had any say in anything to do with my body. I can’t do anything to really stop the incision from separating. I’m not good enough at changing appliances that I feel comfortable with the knowledge that I’m going to have to change the whole thing on my own for the first time probably today or tomorrow.

The plan is to have reversal surgery in about four months. Hopefully everything heals up well and it can happen.

So that is where I’m at. Not the greatest place and brand new to the world of medical issues and having zero control over what’s happening.

Thanks for listening.

I see that this group isn't very active, currently. I had my ileostomy at Mayo in January 2013. I am very happy with it. I haven't read all the posts above yet, but maybe they'll be something new for me to learn or contribute. Fingers crossed this thread becomes more active... I will definitely participate. I'd really like to help people not be scared.

Hi my dad is getting one - im not sure what the name for it is but bag on outside of body after bladder removal w/ in 6 weeks any advice or info you can give me to pass on?