Ostomy: Adapting to life after colostomy, ileostomy or urostomy

It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.

Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you’d like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I’ve had urostomy surgery just by looking at me? What about intimacy?

Welcome ostomates. Let’s talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How’s it going?

Having problems with my ceocomy tube

REPLY
@meg22

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.

Jump to this post

@meg22 Hi,
I hope you’re healing well and either have had your reversal surgery, or have it scheduled. I also had a diverticulitis perf and had a colostomy for 3 months. I also had an open wound after my staples were removed and I think I was a pocket of infection that needed to seep out. I had trouble with finding the right bag that didn’t leak. It was difficult to return to work. Fortunately I had experience taking care of colostomy bags, just not my own. I had a would care and ostomy nurse come for 6 weeks to do home care. This was in 2013, I still take senna and the first year was not easy to be “regular”, my doctor says I still have diverticulosis that she couldn’t remove everything or she wouldn’t be able to reconnect. It’s a 50/50 chance I’ll end up with another. My last colonoscopy went well and I cried so hard afterwards because, well I suppose I wanted the good news so badly. I hope that things are going well for you. And I’ll look to see if you’ve posted again. I still have to make sure I go on a regular basis. And I had incision pain for at least a year after the reversal. I was 29 at the time, and things get better.

REPLY
Please login or register to post a reply.