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New colostomy need lots of advice

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Posted: Sun Jan 09, 2011 9:53 am
Hi all, 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 also have big problem with pancaking which leads to blowouts any help would be appreciated.  Daydreamer
Posted: Sun Jan 09, 2011 10:30 am
HI again, sorry didn't add any of my medical history here goes = dignosed colorectal cancer in 2007  had temp loop iliostomy, radiation, and chemo.  2009 had reversesal .  3 months later had to have iliostomy back due to fistula from radiation damage. Had to wait until march 2010 to try first repair of fistula which didn't work, second repair sept didn't work and was told that it wouldnt be repairable as too much damage and inflamation which wouldnt heal and everything was meshed together and couldn't be separated to try any other repair. So had permanent colostomy done on the 1st of dec. Had got used to manageing iliostomy knew what diet etc suited but colostomy is like starting again so any diet or menus or any advice would be wonderful. Thanks
Posted: Sun Jan 09, 2011 12:56 pm
everybodys diet is differnt so its a learn as you go thing some can eat veggies and nuts some cant you just try things one at atime and find out what you are willing to deal with like for me its meats and pastas no problem turkey and ham fast out put i do ok on spices but have fast out putfiber real gasey so there is alittle help but rember to chew chew chew lol thats what almost everyone one will tell ya
Posted: Sun Jan 09, 2011 6:18 pm
Everyone has different food tolerances.  Take it slow and experiment.  You can spray the inside of the pouch with a veg oil to prevent pancaking. Dunno if they sell "pam" cooking spray where you are.
  Past Member
Posted: Sun Jan 09, 2011 7:03 pm
Hi Gal.
     I neven even thought about diet until I began seeing it mentioned here.  My Dr. didn't say any thing 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  ..Am doing great with my just hang in there and try for your reversal.

good luck
Posted: Sun Jan 09, 2011 8:26 pm
Hi there, had my colostomy in June 2010, and although am more independant with it, I still hate "Colin the Colon" with a vengence lol .  Although the hospital just said not to eat nuts, I have found a lot of things don't agree with "colin", e.g. sweetcorn, peas, wine gums, haribo's (my favourite lol ) eggs, processed garlic (not fresh one thank God lol ) , Christmas Pudding, Stuffing etc 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 obesese to put it mildly) hate myself and in a wheelchair due to breaking my back 5 years ago  and have a supra pubic catheter called Thomas John to round things off lol
Posted: Sun Jan 09, 2011 8:31 pm
Hi there, sorry to hear about your health problems, although the hospital say 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 its the norm, I also found 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 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 anycase as I'm a paraplegic and the pubs in Wales aren't really wheelchair friendly a bit like the one's 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 your out with friends who don't know what you've been through, I'm not on here very often as I'm a newby but am on facebook if you want to chat more , take care, keep smiling , Meira Lloyd Owen
Posted: Sun Jan 09, 2011 9:16 pm

What the other posts are saying is very accurate.  Also many times what will not work now as far as a 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 to much attention.  The interest rates in your country as far  as bonds are sky high.  I think about the highest in the world right now.

Good luck

Posted: Sun Jan 09, 2011 10:29 pm
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 havesome  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 possiblity 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.        Smile
Posted: Mon Jan 10, 2011 1:38 am
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......
  Past Member
Posted: Mon Jan 10, 2011 2:07 am
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 cuz of childhood onset of crohns 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 pooh 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 pooh, eh??
Posted: Mon Jan 10, 2011 7:42 am
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 abit lost and want to get back in control with a routine as soon as possible. I tried baby oil (its 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 (am a widow with 5 children) but I dont 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 would love to know more about that as well.  Thank you all so much.  XXXXXXX
Posted: Mon Jan 10, 2011 6:43 pm
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.

Posted: Tue Jan 11, 2011 10:37 am
I know this sounds simplistic, but for pan-caking, 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
Posted: Tue Jan 11, 2011 5:43 pm
A comment to Debbie,

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

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