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Ostomy: Adapting to life after colostomy, ileostomy or urostomy
Ostomy | Last Active: Mar 24 1:09pm | Replies (419)Comment receiving replies
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.
Replies to "Hi! I had a bowel resection and colostomy on September 21 after two weeks of hospitalization..."
@meg22 I thought I went through hell, but my hell was nothing like what you are going through. Welcome to the land of the living. Yes, every tiny hole or crease the poop can find, it will. If you have not found out yet how to put on your appliance - pouch or bag - so you do not have creases, with time you will have it worked out. In the meantime don't make any major plans. It took me months before I did not smell. Diet has a lot to do with the process. I am unable to have anything in the cabbage family or the onion family. Then there are those beans. I have had my ostomy for 4 years and I still can not have these foods. Beets were the only vegetable I was able to have in rehab. I hope you like beets. Tomatoes have skins and seeds. Sorry, I'm not going to go down that road right now.
I had staples once, and that was enough. I don't think doctors have ever had them or they wouldn't put anyone through that. Not having enough supplies can be a problem, when I order then now I always order just a little more than I need, just in case. I do not have to worry about cleaning out poop from my belly button, because of my surgeries they really cut me open and took it away. Why, I do not know because I never ask. I was "packed" every day because the doctors wanted me to heal from the inside out, no nice incision just a big scar that tape will not stick to.
There is nothing wrong with being scared, you do not have anything to compare this with. You will know what kind of person you want to marry, if she can put up with everything you are going through and still be by your side. If you think you are frustrated now, it could get worse. I was told that I needed to keep extra supplies with me at all times, just in case. I have never had to use them - this is when a backpack comes in handy, or something like it. Crying is better than screaming, throwing or hitting something when you are screaming at, throwing at or hitting something that has flesh and blood, because you are frustrated. When you have a support person or group who will be there when needed you are fortunate, not everyone has such a "family".
When I had my surgery the doctor said it could be a 6 months or forever ostomy. I have a forever ostomy. You DO have control of your body, just not what or how you expected it to be. Take a deep breath, hug yourself, and tell yourself that you are okay and will get through this "new experience", one way or another. Remember Connect is here 24/7, you may not get an answer that fast, but you will get an answer.
mlmcg
Hi @meg22,
I'm truly sorry to hear all that you are going through, and I want to tell you that you've come to the right place to talk with people who have similar experiences and to get support from members who understand what you are going through – welcome.
You've just had major surgery, so allow yourself to feel physically and emotionally exhausted. Everyone recovers differently, and following this surgery many people have changes in how their bowel works. Part of your large bowel has been removed, making it shorter, so stools pass through more quickly and can be loose and frequent. It may take some time for the bowel to settle down, and most people find that, with time, symptoms become manageable.
Here's some information from Mayo Clinic about recovery after colostomy:
https://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825
I'm glad you've connected with @hodagwi and @thull, and I'm certain other members will return to share more insights with you.
I also found this information about colostomy, https://medlineplus.gov/ency/article/002941.htm, and based on that, may I ask if your health care team is certain that it is the wound (incision) breaking open, and no other complication?
@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.
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Prayers and support for good healing and having this resolved. I am facing surgery for both bladder and colon in another month or so. I am ok now and on antibiotics so I don't have an infection before then. Looking back, would you do anything differently? I had 36 stitches for lower bowel removal a couple of years ago and healed ok. Feel lucky about that. Not had a bag then but am now facing two bags in another month or so. Any idea why these complications arose? I am 71 so not a spring chicken but am an old rooster. It will get better.