Need advice for coping with post-colostomy eating difficulties

Hello,

I hope it is okay to post here as a partner. My husband had a permanent colostomy about a month ago. He was unable to eat for 16 days and then sent home after three weeks only able to nibble tiny pieces of food and with only mucus in his bag.

He was readmitted to a different hospital a few days later who diagnosed a blockage and cleared it after a couple of days with irrigation.

He has been home four days and can only eat a few spoons of food in the morning, after that he feels too full to eat, his bowel sounds are really loud and he has a lot of discomfort from trapped wind.

His nurses say it will settle down but he has lost a lot of weight and needs desperately to be able to eat and drink more.

Does anybody here please have any advice for us on how to cope.

Thank you

JoAnne, welcome! It is great that you found this site because everything that can happen to your husband has probably happened to someone on here, and everyone is more than willing to share their experiences. When I first had my colostomy, it did take a couple of weeks to settle down and have real output. I have not had any blockage, but give it a little time. You may try eating lots of small meals a day. You may want to ask your doctor if you can use something like Citracel to hurry the poop along. I found it works and tastes much better than MiraLax. Probably not as expensive either. Lots of foods will help too. The normal things they tell you not to eat with a colostomy because they cause liquid output, but be careful of the ones that cause gas. Gas X may help there!

Hello Joanne. This problem often rectifies itself after a while no matter what you try. It is probably as well to look at getting sustenance in the short-term  so that he can build his strength and weight. If he is feeling full when eating solids, it is sometimes useful to do this by way of liquid supplements which are easier to digest. also, they are less likely to produce the wind, which may well be what is giving him the feeling of being full, when in fact he isn't.

Also, it might be a good idea to look into the possibility of irrigation. I have found that it's great for  getting rid of unwanted wind as well as having the usual benefits of no output during the day. The use of stoma plugs can help with passing trapped wind as they keep the hole open and the wind just passes through them without me even noticing. 

Hope this is helpful

Best wishes

Bill

Thank you both for your replies. They are really helpful. I have googled the drugs you mentioned, Puppyluv56, to find out what they are in the UK and will get them today.

Bill, it is good to hear about irrigation, and I will speak to his nurse about it today. It was an enema that got things going finally for him with the bowel obstruction, so I'm sure it would help.

It's such a relief to have someone to talk to about this. Thank you so much for your kind replies.

J

Hello! I prefer not to use drugs, but use natural stuff. For me, the best is to eat one or two prunes a day. It helps and the output is not liquid. I have them at home, and they last a long time. Since pretty much everything raw affects me, prunes are the perfect solution for me.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

A month? Not much time to recover from losing organs. Did he have any other issues? My colostomy was a gift from cancer. My surgery included repairing a hernia (ouch), losing my anus, rectum, lymph nodes and a bit of large intestine. I say this because of everything I went through, my colostomy was the easiest to recover, easy to learn the bits and pieces of my great new body (?), no pain, and the only problem I had with food was eating over 5,000 calories a day and losing weight. Now that my cancer is gone, I can't do that anymore--I'm getting fat.

Not a Doc, but something seems to be wrong that has nothing to do with your husband's ostomy. As I said, the chemo, radiation and everything else they throw at you was far worse than my ostomy--his name is Stomy and he's one year old.

I may not be a Doc, but I'm a mother, so you as an excellent wife know something is not right. I defer to Bill on all matters dealing with the NHS, but there is something going on that may have nothing to do with his ostomy. Please 'cover all the bases' (U.S. baseball) and ferret out the cause--it may be depression, or it may be organic and need immediate treatment. Let us know what happens: the two of you will have a wonderful life together if the only addition to your life is his ostomy. Please find out what else is going on, and don't let the Docs blame everything on his ostomy!

I had trouble eating and gaining weight after colostomy also. Ended up with anemia and was given vitamin B, folic acid tablets etc as well as protein drinks to try and build up strength. Also given a low dose depressant medicine in case the underlying cause was depression. After a month or two, I got stronger and weaned myself off the antidepressant. Doing good now but still haven't gained all my weight back but feel stronger and more energetic (and consequently, happier).

One of the most important things here is to keep his strength up. He must eat easy-to-digest foods right now. Protein shakes are a good way to get some energy and a decent diet to start. Fluids are key to keep him hydrated. Teas, iced and hot, and soups are good too, so long as no big chunks are in the soup. Then progress to pasta. Right now he must chew any food more than he did before. A blender will help you prepare some foods for him. It will settle down with time but air will always be something he will have to be aware of. Find an ostomy nurse in your area. They will give good advice as this is what they deal with daily. The most important advice is NEVER think you are a burden to any healthcare person, never be afraid to seek help.

Thank you all for your helpful posts.

He was readmitted and is home again and able to now eat very small meals. Still in a lot of gas-like pain though but not as bad.

I think, as a couple of you have suggested, depression does play a part and I am trying to get him to talk about this.

He is making slow progress and there is no quick fix but it really helps to just hear the thoughts, ideas, and suggestions of all of you who are further along in this journey.

Thank you.

Hey Joan,

I've been an ostomate for 18 months. In that time, I've had 40+ blockages. The first two I went to the emergency room per doctors' advice. They didn't know anything about irrigation, so instead they pumped my stomach for 4 days and starved me.

I lost 20 pounds or 9 kg. They don't feed you anything, not even an ice cube! It was the worst. I normally weigh 152 lbs, I got down to 99, and I'm now 132 lbs.

I had my rectum removed due to cancer. I have an ileostomy (small intestine). If I'm not super careful what I eat, I block up and suffer dearly for usually 2-4 days. Foods that plug me are: popcorn, celery, onions, any veggies with skin... tomatoes, beans. No salads! No raw fruit with a skin or peel. Bananas are fine, mangos, watermelons are good too. If I eat too quickly, it's dangerous. I must chew like a cow and not swallow large chunks, no matter how filling it is. Always drink lots of fluids, 4-8 pints per day! Not ale! Juice, water, and the like.

I hope to have my bag removed soon. My surgeon is the best and thinks it's still possible. There was so much radiation damage that the 5 surgeons that I interviewed first all gave me a dismal outlook, so I fired all of them! I found the best guy in CA and turns out he taught 2 of the other candidates and apologized for their poor bedside manners.

It's not normal to have blockages often, I'm told. (3 a year is average, my own poll) It could be caused by what's called adhesions or scar tissue inside, or maybe he's eating a non-ostomate diet? Gotta be low residue or soft GI, they call it here in the states.

Good luck to you both! Post again or let me know how things are going. Take care, Donavon B.

Hi Joanne, that's exactly how I felt for many weeks. The gas was one of the worst parts of having a new colostomy. I found eating low-fiber foods such as white bread with cream cheese or tuna and mayo worked. Always very small quantities but something tasty to encourage my appetite. I was not afraid to eat biscuits, Rich Tea in particular. These were just foods I ate in the first few months until I was able to eat more high-fiber and varied foods. Cereals such as cornflakes with a just ripe banana are also good. I lost a huge amount of weight which was distressing but I eventually put it back on. My surgeon recommended a fortified milk drink which gave me almost 1000 calories a day. But the main thing is not to worry about that side of things too much (easy to say, I know!!). Your husband needs to just give himself time. It will take around 6 months until he feels like himself again but he will start to feel better at around 8 weeks. At some point, I found that gin with flat tonic worked for me - thankfully!! I only had one in the evening but it was wonderful :) Good luck! Please tell your husband that it is possible to get used to a colostomy which eventually becomes relatively easy to handle (for me anyway and I appreciate I've been lucky). Best wishes, F

Hi Joanne. I agree with the suggestion to speak with an ostomy nurse as more often than not they've dealt with the condition you've described. Is your husband eating gassy foods? Also, the surgery is recent. Usually a person's system needs more time to adjust to a new normal. All the best - Silveradokid.

Gas pain hurts. Have him lay on his left side as much as possible. That's your stomach side. Sometimes I rub my tummy. It works miracles. The gas usually releases immediately. I even laughed as it's cool how it works. Gas pain hurts at times but can be relieved. I had my rectum removed, anus sewed up a year ago. I've been lucky, no blockages. It does take time for your new surgery to settle down. You will have up and down days but it gets better. My stoma (Stella) and I have become close. I'm lucky to be alive a year later. God bless all of you.

Have your husband try Gas-X or Beano. They help relieve the normal release of gas. Most people don't realize it, but even "normal, healthy" people "fart" at least 14-20 times every day. There is a normal build-up of gas due to digestive fluids mixing with input of food.

Peace

Bill, what is a stoma plug?

Hello looking forward.

I'm so glad you asked your  question about stoma plugs this week as the photo I posted is still on the first page of 'photos' under 'latest'. If you cannot find it there, it will still be on my profile, which you can enter by clicking on my name on this or any other post.

Best wishes

Bill 

I don't have a colostomy, mine is an ileostomy but for the first 7 months I could barely eat anything. I made a lot of instant breakfasts and different protein drinks. It ended up that my stoma had strictured and I had to have it redone but perhaps you could do protein drinks until he feels better. If he doesn't get better, you should go back to the doctor.