Seeking Advice for New Colostomy - Diet, Products, and Irrigation Tips Needed

Hi all, I had my colostomy on the 1st Dec 2010 and am just getting used to it now. It hasn't settled down to any routine yet and I would be interested to hear about any tips for diet and products, and about irrigation. I also have a big problem with pancaking, which leads to blowouts. Any help would be appreciated. Daydreamer

Hi again, sorry I didn't add any of my medical history. Here it goes: diagnosed with colorectal cancer in 2007, had temporary loop ileostomy, radiation, and chemo. In 2009, had reversal. Three months later, had to have ileostomy back due to fistula from radiation damage. Had to wait until March 2010 to try the first repair of the fistula, which didn't work. Second repair in September didn't work either, and was told that it wouldn't be repairable as there was too much damage and inflammation that wouldn't heal. Everything was meshed together and couldn't be separated to try any other repair. So, had permanent colostomy done on the 1st of December. I had gotten used to managing ileostomy and knew what diet etc. suited, but colostomy is like starting again. So, any diet or menus or any advice would be wonderful. Thanks.

Everybody's diet is different, so it's a learn-as-you-go thing. Some can eat veggies and nuts, some can't. You just try things one at a time and find out what you are willing to deal with. For me, it's meats and pastas, no problem. Turkey and ham fast out put. I do okay on spices but have fast output fiber, real gassy. So there is a little help, but remember to chew, chew, chew. Lol, that's what almost everyone will tell you.

Everyone has different food tolerances. Take it slow and experiment. You can spray the inside of the pouch with a vegetable oil to prevent pancaking. Dunno if they sell "Pam" cooking spray where you are.

Hi Gal.
I never even thought about diet until I began seeing it mentioned here. My doctor didn't say anything about it either. I ate just about everything I wanted. That was with my bag. I lost it about a year ago and can't find it anywhere! I think some medical person stole it! Well, he can just have it. Ha ha. I am doing great with my reversal....so just hang in there and try for your reversal.

Good luck.

My Ostomy Journey: April | Hollister

Hi there, I had my colostomy in June 2010, and although I'm more independent with it, I still hate "Colin the Colon" with a vengeance lol. Although the hospital just said not to eat nuts, I have found that a lot of things don't agree with "Colin", e.g. sweetcorn, peas, wine gums, Haribo's (my favorite lol) eggs, processed garlic (not fresh one thank God lol), Christmas Pudding, Stuffing, etc. But although I'm eating much less, I'm gaining weight and I really can't afford to do that as I'm massive (clinically obese to put it mildly). I hate myself and I'm in a wheelchair due to breaking my back 5 years ago and have a suprapubic catheter called Thomas John to round things off lol.

Hi there, sorry to hear about your health problems, although the hospital says it takes about 3 weeks to get used to your colostomy, it really takes at least 3 months. I've named mine Colin as I found it easier to deal with (had to be a male name as he's painful, smelly, a nuisance, and full of sh........ lol). We're all different. I get a lot of pancaking as well. I think it's the norm. I also found that a lot more foods affect me and not just NUTS as the hospital had said, e.g. peas, sweetcorn, eggs, processed garlic (not fresh thank the Lord as I live on it and no I'm not a vampire lol), wine gums, etc. Try things out. We're all different, but try something 3 TIMES so that you can rule them totally out of your diet or not. Going out to eat was my main concern (I don't get out much in any case as I'm a paraplegic and the pubs in Wales aren't really wheelchair-friendly, a bit like the ones in Temple Bar Dublin lol from memory of rugby trips before my accident lol), but when I do, I try to eat PLAIN food without sauces, boring but safe, especially if you're out with friends who don't know what you've been through. I'm not on here very often as I'm a newbie, but I am on Facebook if you want to chat more. Take care, keep smiling, Meira Lloyd Owen.

Dreamer;

What the other posts are saying is very accurate. Also, many times what will not work now as far as food may work 6 months down the road.

Your body will try and compensate over time. I have found things do change. Sometimes a step back, then one or two forward.

Off topic:
You probably don't pay too much attention. The interest rates in your country, as far as bonds, are sky high. I think they are about the highest in the world right now.

Good luck

Rick.....

Hi Daydreamer - I was greatly taken with your medical story, as in many ways it mirrors my own, although I never had things as rough as you have had.

I hope you find having a colostomy to be possibly easier than an ileostomy because you may have some options open to you (such as irrigation) that are not available to ileostomates, and may achieve some degree of bowel control.

The reversal I had from 2004-2009 deteriorated over time, also due to radiation damage, so that in early 2009 I had a permanent colostomy placed. Since it is in the descending colon I can irrigate it daily. This may be a possibility for you after about 3-6 months if your doctor and ostomy nurse OK it.

Even at 18 months into the colostomy I was finding foods that caused me problems. Now at 2 years the worst offenders still are: onions, garlic, beans and lentils, eggs, pineapple, and really dense white flour products like pancakes and commercially prepared cakes. These offenders either cause too much gas, odor, blockages, or cause additional output I don't want! Bananas are great regulators, and fruits and veggies result in more output.

I find eating yogurt daily is very beneficial, especially in controlling odor.

Good luck and try the United Ostomy Association of America website for their list of foods to avoid or be cautious with.

You had a J-pouch done...if so, I'm surprised they gave you radiation....I had colon cancer in 2003...had J-pouch and was sent for chemo but not radiation because my surgeon said it would damage the healing process of the pouch......

Yea, I had mine done several years ago and this wasn't my first, but you will learn what works for you and what doesn't. My issues are because of childhood onset of Crohn's, so what I eat or don't eat won't be the same for you. Suffice it to say, all I have to offer is I love my ostomy! For instance, my friends and coworkers are jealous that I am able to sit and poop while I work or whatever and they can't LOL. So I say make friends with it, adjust as you can and will, and learn to love your new friend. Funny how folks in our society are still afraid of poop, eh?

Thank you everyone,

I think I managed my ileostomy better knowing it was temporary and just got on with it. Now I have the permanent colostomy (no J-pouch) I feel a bit lost and want to get back in control with a routine as soon as possible. I tried baby oil (it's all I had) for the pancaking and it helped. I am so delighted I found this site and you wonderful people as I was going through this alone (I am a widow with 5 children), but I don't feel alone anymore. Thank you all so much. I would love to hear more about irrigation as none of my medical team mentioned it to me. Also, the Convatec Vitala plug sounds amazing. I would love to know more about that as well. Thank you all so much. XXXXXXX

I had my Surgery for Colorectal Cancer in 2003. It very close to being too late. I too had both Chemotherapy and Radiation the latter damaging the bladder and a section of small bowel. Diet in my case is rather different to most because of the small bowel damage. I had surgery January 30 2010 but it didn't go to plan because of massive adhesions. The bowel perforated and I spent 4 months in hospital, 7 weeks in intensive care. I still have diet issues.

I cannot eat nuts at all. All meats have to be minced after cooking, i do this (being the family cook!) with whatever sauce is "on" at the time. Veges, yes I have to steam most of them, carrot MUST be soft and almost a mush. Peas are a definite NO and I must keep fibre as low as possible or I block up. I cannot eat apples or other "solid"fruits unless cooked and near drinkable. Not nice? No, not really, I think terrible would be nearer the point. I serve every one else first and keep mine cooking a bit longer. Normally there is only my wife and myself But we do have visitors quite often. That is when the difficulties begin, especially when my daughter and her family arrive from Auckland. You know kids, "I don't like that". This approach drives cooks to drink. Well, that's my story anyway.

I know that I sound rather awful and hopefully you will not have to go to these lengths. I too spent some time in a wheelchair but now get around on a pair of Canadian style calipers. A sedentary way of life adds considerably to our problems. Because I cannot walk far I take a "stool softener" to make things easier.

I irrigate. Each irrigation session gives me 48 hours of control. I still have output just a small amount getting towards the end of the 48 hour period. It saved my sanity. I have irrigated, some times with difficulty, in Hotels, motels, cruise ships and even the Indian Pacific train that takes 3 days to cross Australia. THAT was an experience and a half. By the way, Mine is named too, ETNA after the volcano. It erupts at the most unexpected times and when it does it is a disaster.

You have a lot with which to contend. Keep your chin up.

Doug

I know this sounds simplistic, but for pancaking, make sure you have air in the bag. In other words, do not have the bag without air because it acts like a vacuum and then your stool just sits where it comes out and will not drop down into the bag. Coloplast's bags also have the insides coated with Teflon, but other pouches you can add baby oil or whatever you have on hand to rub on the insides. My two cents worth - I'm not an ostomate, just an ostomy nurse with the WOCN. Debbie

A comment to Debbie,

No, not "just an Ostomy Nurse", you are worth very much more than that description.

Doug

Had colostomy in April 2009 and reversal in Nov 2010. Had no diet problems at any time during the time I had the bag and now. Getting along very well. There is a product I used which is called a lubricant and odor remover that is available at the drug store. It works very well for pancaking. You may want to try it. Comes in small packets, about 50 to a box.

Thanks for the tips. I will try everything. I am like a sponge at the moment, trying to soak up as much information as possible. My stoma is with me for life now, and I want to start up my life again, which has been on hold for 3 years. So the sooner I get my routine and diet, etc., sorted, the better. I am like a control freak at the moment. I want to be the boss, not the stoma. Ha ha! I am hoping my life begins again at 50.

Thanks, all tips have been great. It's early days yet, but I feel better and think another few months and I should have a good idea of what foods I can and should not eat. I am more confident after being on here and am eating everything so far so good.

Junopete, as for the economy and recession back here, I am not letting it into my little world at the moment. Who wants to be anymore depressed? Ha ha.

Monica

Hi! I had my colostomy in May of 2011. It was done due to a ruptured diverticulum (I didn't have any symptoms of diverticulitis at all) and the resultant peritonitis. I couldn't eat for months after the surgery. However, I can eat without problems now. I'm just getting sort of used to it. Not sure about having a reversal as I've heard so many who have many problems with urgency and incontinence (because of the necessity to get to a bathroom and one not necessarily nearby) after a reversal. I have some problems with pancaking ... NO, I won't spray the inside of the bag because the pancaking for me happens under the barrier. I've tried many things and still continue to try many things. I have been taking Imodium due to loose B'M's which cause blowouts in the middle of the night (not fun for me, my husband, or when we are somewhere else besides home). I also have an irritating (to me) peristomal hernia which my surgeon states is probably not a good idea to repair as repairs are only about 25% effective with this type of hernia. I am a 70-year-old woman (see my photos) who feels wayyyyy younger than 70 (my soul is perhaps about 35 and I feel not much older than that). I am very active - love Middle Eastern Dancing, knitting, crocheting, playing piano, flute, recorder, dulcimer, and am learning Violin. I sang professionally for many, many years but have decided to not sing any more ... would rather be remembered when I was really good rather than how I will sound in the future (like a shaky-voiced old lady LOL).
Enough about that ... I'm interested to hear everyone's experiences with their colostomies.

Hi, everybody, I have just received a leaflet about 'pancaking' and about a new product. It is a stoma bridge designed to be used inside the bag, therefore stopping the plastic sticking together. It is called Clearway Stoma Bridge and is made by Opus Healthcare. I haven't tried it myself, but it looks like quite a good idea. Just thought I would mention it. Jenny

Jenny, I have had that idea and tried to rig something. I haven't been successful yet. I have been on Google. There is an Opus Healthcare in Austin, Texas, but I haven't found their products. I have found the product in the UK. I will continue to look. Please post any additional info you find. My supplier doesn't have it. Carol

Hello, Carol. On this leaflet, it gives you the order codes which are as follows: Clearway Stoma Bridge 1x30 bridges - Code 7700 or Mini Stoma Bridge 1x30 - Code 8800. The phone number listed is 0800 458 7605. I know this is all for the UK, but perhaps it will help in your search. Good luck. Jenny.

Hi! My pancaking is not inside the bag, but rather stool that gets in around the hole in the wafer and forces itself, via pancaking, around the whole wafer. No matter what I do (paste, heating the adhesive wafer, using paste, cleaning the area thoroughly with a castile soap (no additives) and rinsing and drying thoroughly, etc. Sometimes, it just happens and it's more than annoying (especially when it happens in the middle of the night). My husband suggested I put two holes in a large garbage bag and stick my legs into it and make two more holes for my arms and then tying it or taping it to me. Well, that's one way to keep the bedding clean LOL...however, I'm not going to do that. OK, that's what I say now.

I did look into the Clearway Stoma Bridge but that is to keep the bag from sticking together and they do not offer it to clients in the U.S.A. Hope you all find some kind of solution!
Carmen in AK

Ooh er, lyrical, it sounds as if you do have a problem. I hope that someone can come up with a solution. Thanks for looking into the Stoma Bridge from your side of the pond though.

Lyricalaska: I also had that problem in the beginning. Someone suggested Eakin Cohesive Seals and I have to tell you that I very seldom have the problem with the poop getting under the wafer. I think this may be something that can help you. It is just a barrier that will stop things from being able to go any further than the opening. After a day or two, sometimes it will start to break down and a small amount works its way under but by then it's time to change pouches anyway. I order my supplies from Edgepark. Good luck! -Rhonda

Hi, I am also a new ostomate, and I have found out that a lot of companies give free samples, like Coloplast, Convatec, Hollister, Salts Healthcare.. etc. Hope this info helps you a little.