Disappointed with Colostomy: Seeking Advice on Managing Output

It is 16 months since I had my colostomy and I was so looking forward to being able to irrigate and the freedom it can give. But, today I found out that I will never be able to irrigate because I don't have enough colon left. My consultant told me before I had my stoma made that although I would have a colostomy it would probably behave more like an ileostomy and unfortunately he was right. Of course, I'm glad my life was saved by having a lot of dead bowel removed which had gone bad but the disappointment is still there just now. I tend to be housebound in the mornings as my watery output keeps filling up my bag and I need to be near the bathroom so I phoned the stoma nurses to see if I could irrigate. I have had to cancel an important appointment at the breast clinic today as my appointment was for 9am and this is not good. The stoma nurses have suggested I change my times of eating and keep a food diary to see if anything I eat is making the situation worse, and also the timing of my meals. Have any of you found that certain food or drinks have made your output change at all? Also, they told me to have 2 loperamide half an hour before each meal, and to have my main meal at lunchtime. During the mornings my bag fills right up again and again up until about 2pm, and, so far I have never emptied away from home as it usually behaves itself for the rest of the day. I do have a lot of milk in my diet and was wondering if it was that.

Beshlie x

Beshlie,

Below is one of many food charts on the web for ostomates.

Ostomates Food Reference Chart

I noticed in the list of increased stool that milk is one of the foods that creates more output. For me, it's orange juice and beer...lol

16 months after surgery is still pretty new for your body to adjust to the trauma that it has gone through. Eventually, your body will start absorbing more nutrients from the foods you eat and adjust to not having a majority of your large intestine. The output will remain slightly watery depending on the foods/beverages you take in because you no longer have a large intestine to soak up the water.

I have noticed other foods tend to thicken my output that are not on the chart. For me, my output is thickened by pasta, potatoes, crackers, pretzels, and marshmallows. Also, note the obstruction type foods and if you decide to try them, try them in moderation, eat them with non-obstructive foods, and chew your food very, very well.

I hope this helps.

Bain

Thank you for your reply, Bain. I have to be careful with sugar and white flour products as they raise my blood sugar, and I'm diet-controlled type 2 diabetic. I am going to cut out drinking milk and see what happens, even though I have the lacto-free type.

Will be back with any results. :)

Beshlie

Hello Belshie.

Sorry to hear about your disappointing news. I cannot bear to contemplate what it must be like not to be able to irrigate. Although there are so many who come on here who are in precisely that same position and report that they cope pretty well once they've made the necessary adjustments. I hope that you too are able to adjust so that your life gets back to a reasonable 'normality'.

Best wishes

Bill

Hello Bill,

I think the adjustments are now mainly in my mind as I was so fixed on being able to irrigate! As Bain said, it is still quite early days, 16 months is nothing really compared to the length of time some people have had a stoma. The period of adjustment is a lot longer than I thought it would be, but we live and learn. :)

Beshlie

I have stopped drinking milk, just have a little in decaf tea and coffee and have doubled my intake of loperamide but my stoma is still very busy in the mornings. I can go from tea time until when I get up the next day without much output. This is worrying me because on the 12th I have to go to the hospital for the results of some biopsies to find out if I have breast cancer or not and the appointment is at 12 noon - my 'busy' time. The only thing I can think of is not to eat the day before which will be hard with my blood sugar. I tried to get an afternoon appointment but they don't do them for this. Any suggestions anyone?

Hello Belshie.

I think your idea of not eating much the day before sounds okay, but you might think about taking some liquid meals instead so that you are still getting the nutrition you need.

Personally, I would write down what the problems are and send it to the people who made my appointment, warning them of the possible consequences of having an 'inconvenient' appointment time (pun intended). Then, if things get out of hand, they cannot say they were not warned. These sorts of things are part and parcel of this condition, and people ought to be aware of what they are dealing with.

Best wishes

Bill