total colon removal and after?

Hello to all,
I am an Italian woman, and have had my large intestine removed.
It is almost two months that I fight with some problems.
First of all I have to go many times in the day and some in the night to the toilet!
2 or 3 stools in the night and up to 10/12 during the day.
Am very sad for this, and I do not know how to manage my life with this problem.
am not able to organize anything!
Will this situation get better?
Or all my life will be in such a terrible way?

Thank you in advance and ssorry for my english

[ducky406]

Are you going through chemo or any kind of treatment? This can really influence your bowels. One of the treatments my grandma went through gave her horrible diarrhea almost constantly. If this is what's causing it, have hope- once treatment is done it does balance out. Although bad days are really bad days and you may want to look into a mattress protector. (My grandma got violently ill one night and .. umm couldn't empty her bag in time.)

Also it's possible that previous food intolerance were ignored because they were hidden by the symptoms of cancer. Does any particular food seem to make it worse? Try to get rid of some of the classic trouble foods-lactose, dairy, wheat, gluten, eggs, caffeine, fake sugars, msg, and egg. Do this one at a time and see if it helps at all. It might take a week or two without one food to really see any difference. I know that for gluten they suggest 3-6 weeks without before seeing how your body does on it again. A dr can also test for certain food allergies, although this test won't pick up something such as a lactose intolerance, it would pick up a direct immune response to dairy, gluten, etc.

I know that this loss of independence is frustrating and depressing but try to have hope. My grandma did very well most days and was able to live life without needing a toilet by her at all times. She would sit in her painting class and do her water aerobics class (both about an hour), she took quite a few trips in the 4 years she had her bag. Admittedly her bad days were still there and yes they were really bad sometimes; and treatment really effected her bowels. Ignoring the bad days though, unless you were around her for hours you would never know she had a bag. It will become more manageable over time, especially once your through treatment.

[Ginger1111]

hi,
thank you a lot for your answer. i had a bag for 5 months, as the doctors said me that I had to do chemio or radio. but then fortunatly the istological response was good, was a not bad cancer, even if very agresive even other parts of my internal body was affected by this and removed.
And in november was reconnected (my remaining intestine with anus).
My trubble is that I have to run very often to the toilet.
And my life is very bad now.
I would like to know if others have had my same operation and how they have solved it. I am 39 years old, and wish still go out and travel.
Thank  you in advance for any suggestion

[Morecambe]

I underwent a total colectomy in 2004 for torrential diverticular bleeding and, in answer to another Medhelp patient's question, I posted my own experiences on:-

http://www.medhelp.org/posts/show/523166

You may like to have a look at this summary.  In regard to your specific problem of very loose motions, I suggest a very high fibre diet to include items such as:-

- pulverised fresh vegetables to which organic bran has been added
- pulverised fresh fruit to which organic bran has been added
- yoghurt to which organic bran has been added
- only wholemeal/organic bread - no white bread
- no junk food/colas
- home made muesli (soak organic oats in milk, add organic bran, grated apple, lemon juice and other fruit/nuts.  It looks like wet cement but it tastes OK.!!)
- and yes - you are allowed the odd luxury of Swiss chocolate if you wish!!

The whole idea of a very high fibre diet is to add "bulk-mass" to your motions and they should become more "muddy/sludgy".  Imagine a liquid spillage on the kitchen floor on which you throw sawdust to make the spillage more easy to collect from the floor.

regards
Morecambe

[Ginger1111]

Hello,
thank you a lot Morecambe, for your precious information.
What do you mean for pulverised fresh vegetables? like mixed fruit?
Will I never be able to eat fresh fruit and vegetables?
And will I never be the same as before?
I mean to go out with friends for a dinner or a film at the cinema, or even better to go for a journey somewhere?
I feel like my life is finished.

here in Italy the doctors said me to avoid fibre as the will move more my intestine.
But as you said, I thought a lot about this, and I think that you are right, as the fibre will absorb the water!

Before the operation I ate almost fruit and vegetables, and now it is very dificult for me to not eat them.
And so I used to eat raw fish and meat, and drink sometime a good glass of red wine, or in sommer also a beer.

Will my going to toillet get better in time?
Are you still going more then 10times a day?

Sorry for my many question, I feel almost lost.
Nobody here is open to speak about this and the doctors not always are able to give an answer.

besides this, I had a very big operation as not only the colon was taken away, but also all my reproductive organs and one ureter...

and I feel still young am 38, will not end up my life in home!
I will to go back at work and meet my friends, but seems impossible in such condition.

thanks a lot for your help

[mammo]

Hi......there is no reason to be on a special diet after a total colectomy.  You do need to determine which foods cause more bowel movements than others, and your GI doctor can give you medication to decrease the amount of bowel movements you have.  I have gone through this with 5 family members and except for a few things they were able to eat what they wanted.  Time does help, but talk to your doctor about something to help minimize the number of bowel movements per day.  My son has a J-Pouch and lives a very normal life.  He is a marathoner, ultrathoner, mountain biker, avid hiker for months at a time in the middle of nowhere and until recently competed in jujitsu.  He is married and has a wonderful life. ....you can too!

[Morecambe]

I can only communicate to you what helped me and of course I do not mean to disagree with your doctors.  But I feel that what I am suggesting may help and, if it does not, then it will not harm you.

By "pulverised" I mean carrying out the same process as when you grind coffee beans into powder.  This is done in a pulverising or "shredding/grinding" kitchen machine.

Yes - you can always eat fresh fruit/vegetables in the normal way but bran on its own does not taste very nice and I suggested mixing the bran with pulverised fruit/vegetables as a way of disguising the taste and texture.  A bit like giving "strawberry flavoured medicine" to a child to camouflage the unpleasant taste of the medicine....

So, with vegetables you could take 1-2 carrots, some sweetcorn, some peas and pulverise them and mix in say 50 grams of organic bran.

Same with fruit (1 apple, 1 orange, 1 pear, 1 banana and add 50 gm organic bran)

I found that over time the number of #2 toilet visits decreased to a tolerable level.  Today I perhaps have 1 toilet visit #2 in the night and perhaps 2-3 #2 during the day.

I suggest that you try to live a normal life and do not allow your present level of toilet visits to prevent your social life.  In these circumstances I always believe that honesty is the best policy.  Tell your friends that if you go to a cinema you may need to visit the toilet before the show and immediately afterwards.  If you go in a car for a 2-3 hour journey then you will need to choose a route where there are roadside stop/toilet facilities.

Remember most people visit the toilet (even if only for #1) 6-8 times during the day and if you can reduce the number of #2 visits to ~6 then you are not increasing the number of toilet visits overall.

Do please come back if you feel that I have not answered you in full.

regards
Morecambe

[Ginger1111]

Hi.
thank you for your information, actually I have no J-pouch as I had problems also during my last operation when they reconnected my intestine to the anus.
And unfortunately they do not wish to see me again!
i was operated in urgency for a cancer on uterus, and only during the operation they saw that this has infected also my large intestine and ureter, so only the ginecologyst is following me now. No GI .....
The only suggestion they gave me after my second operation was: do not eat fruit (only bananas and apples) do not eat vegetables, only cooked carrots and potatos, do not dring alcholol and take immodium when  needed!

i was operated outside my city, because I live in a small town, and here we don't have so great hospitals.

I really apprecite your answer.

[Ginger1111]

Hi,
thank you a lot for your help!
I really aprreciate it!
I will try what you are suggesting me, it will sure not let my condition get worse!
And it is right that bran will absorb the water!

I hope to be able soon to go our for a normal dinner!
Here in Italy eating is one of the most pleasure :-)

what do you mean for "the number of #2 " ?
it's mean that in one toilet going you wait for two stools? (is this the right name?)

Am sorry for my many question, I know I can result rediculous.
Can you give me an example of your daily diet?
If I am asking to much please just tell it to me.

For one month I refused to do breakfast, and drunk very little during the day.
really the first month was terrible, and I can see that when I am anxious or nervous i go more times to the toilet also 17 times!

Thank you a lot for your precious advices.

[Morecambe]

Hello again.  #1 means a visit to the toilet for urinating/pass water only - and #2 means a visit to toilet for expulsion of stools/motions.

My daily diet is similar to the following:-

breakfast : the home made muesli I described in my previous posting on 3 February, a piece of toast (organic brown bread) + butter + marmalade and a large cup of tea.

lunch:  a sandwich on organic brown bread + accompanying salad, several fruits (orange, apple, blueberries etc) and a cup of tea

dinner:  fish + fresh vegetables, cheese and biscuits or a sweet

also drink ~ 2 litres of water during the day.

Because my motions have settled down, I do not need the amount of organic bran that I suggested to you.  The fibre from the bran in the muesli as well as the salad/fruit etc during my normal meals is sufficient to make my motions semi-solid.

good luck

regards
Morecambe

[Ginger1111]

Hi Morecambe,
again very many thanks for your infos.
I feel better to read all this!

As I understood you also have had a total colectomy (all the large intestine removed) without J-pouch.

Do you drink some wine or beer?

I like your diet, hope to be able to eat soon fresh salad and fruit!

Yesterday I ate semi bran bread and went just 3 time to the toilet in the night, (still not so good) but was not so much watery, so I think that is good!

My family doctor suggested me also not to drink during the meals, is difficult! :-)

Again many thanks!
Am very gratefull for your help

[Morecambe]

Hello again - yes I can drink wine and beer (and whisky!!) in moderation.  Also I drink wine/beer and water during meals.

The effect of the higher fibre diet that I suggested will take time to work.  Your motions will never return to the same consistency as they were before your surgery but with the high fibre diet it should mean:-

- less "liquid/runny" motions which:-
- should reduce the number of #2 toilet visits per day and per night

regards
Morecambe

[Ginger1111]

Hello
I do not know how to thank you!
You give me a lot of hope!
Will beginn to introduce fibre.

here we have whole wheat pasta, and maybe also oats will be good no?
In the yoghurt....

I know that never will be the same as before, and have to learn to love myself!
I will be happy to reduce my toilette going up to 6/8!!
As now as said are the dopple, and in some times worse!

Thank you again!!!

[Morecambe]

I wish you all the best with your new diet programme.  Please do come back if I can help further.

I would strongly suggest that you do introduce organic bran into your diet since this substance is very high in fibre.  Whole wheat pasta and oats are also good sources of fibre but I think bran is the best of all and will probably mean that your motions "solidify" quicker.

regards
Morecambe

[Ginger1111]

hi,
thank you a lot for all suggestion.
Went today to an organic shop, and bought oat and wheat bran for my breakfast, kamut bread and also muesli with red fruits and raisin.

I really hope to improve my situation, am able now to go out in the morning for a while, but shortly after dinner (after 20 minutes), have to go many times to the toillet, sometimes have to go every 10 minutes for also 6 times, like today :-(

When it is in such way I think to let me operate again and put again the ileostomy.
In order  sleed a little more I take imodium (immodium), but however I have to get up and go...
Maybe I just need to be more patient, and not so anxious! :-)
thans again for all.

[UCage7now32]

" and your GI doctor can give you medication to decrease the amount of bowel movements you have.  "

Which medications will slow down the BMs please?

[Ginger1111]

Hello to all....
I returned to work one week ago.
Not every day is the same, and some are very heavy for me.
I mean in regarding to the BM.
Am trying new foods, and have seen that fiber will solidify my BM!
Thank you a lot Morecambe!
It is still a long way until I will have some improvements, but am confident that some day I will get back my life!
Have still lot of BM and sometime I really have to run, fortunately where I work the toillet is near! :-)

In reference to medication that decrease the BM they are made of loperamide don't know the exact word in english, however medicatin like dissenten and Immodium.

They help, but really do not know if it is healty to take them for a long period, have to ask my doc.

Thank again for your support

[Ginger1111]

Hello am here again,

some days are better and some are worst.
I still have to reintroduce fruit, am very scary about it.

Have seen that eating boiled vegetables and salads helps to solidify a bit my BM.

I like a lot beans, do you think I can reintroduce them?
And also tomatoes are one of my favorite vegetables, but am still scary.

Have seen that pasta let my BM increase.

thank you in advance

[Morecambe]

I am pleased that you are noticing some improvements.  I think that you should eat what you like - fruit, tomatoes, beans - whatever you like.  If these foods do not make you sick (which I am sure they won't) then the only risk is that they may affect your BM's slightly.  If this happens then no harm is done - just avoid them and eat foods that solidify your BMs.

You could re-intorduce fruit etc slowly - maybe half an apple or whatever then see if your BM's are affected - if not then build up to larger volumes etc.

I would re-emphasise the value of organic bran added to fruit or vegetables or even yoghurt as suggested in my earlier replies to you.  Bran has a unique ability to "solidify" your BMs.  

Good luck
regards
Morecambe

[Ginger1111]

Thank you a lot

I will add Bran, sometimes I eat whole-grain bread and it also solidify my BMs but increase them!

I still have about 10 Bms a day (considering also the night) but I think that I am just at the middle of the way. As I was operated in November 2011.

Tomorrow have a check by the nutritionist and will se what also he will tell me.
Will let you know.

thank you again

[Ginger1111]

Hello,
I went to the Hospital where I was operated, and talk with the nutritionist.

it is crasy, they told me to not eat salad, and vegetables just a half portion.
Absolutely not fruit, and no bran!

But I will continue on the way you suggested me as I feel better in that way.
i think that sometime is a better help the advices of people that have the same problem as the medical advices.

can I ask you somethink?
Do you have a pouch or however have you still the last part of the colon? I mean the rectum?
They left me about 10cm of rectum I think it is enough in order to have something like an ampulla

Thank you in advance

[Morecambe]

It would be wrong of me as a "non-medical" person to say "ignore what your doctors have told you" but I can only share my own experiences with you - namely that I followed a high fibre diet without any problems - and with less liquid BM's resulting from this diet.  After all, fruit, vegetables and bran etc are 100% natural foodstuffs...

No I don't have a pouch.  When I underwent my surgery the lower part of the ileum was connected to the top part of the rectum - imagine that you have a garden hose that is leaking and this leaking part is cut out and the two ends are joined together.  If you "google" total colectomy I am sure that you will find a site where there is a diagram of the removed part of the colon.

Good luck and do please come back if you need any more information.

regards
Morecambe

[Morecambe]

It would be wrong of me as a "non-medical" person to say "ignore what your doctors have told you" but I can only share my own experiences with you - namely that I followed a high fibre diet without any problems - and with less liquid BM's resulting from this diet.  After all, fruit, vegetables and bran etc are 100% natural foodstuffs...

No I don't have a pouch.  When I underwent my surgery the lower part of the ileum was connected to the top part of the rectum - imagine that you have a garden hose that is leaking and this leaking part is cut out and the two ends are joined together.  If you "google" total colectomy I am sure that you will find a site where there is a diagram of the removed part of the colon.

Good luck and do please come back if you need any more information.

regards
Morecambe

[Ginger1111]

I had the same operation, no pouch, and just 10cm of rectum remained.
I have notice that I have more BM's when am anxious.
And when I eat vegetables and bran I feel better.

I really widh to get to bathroom just 4 times a day and 1 in the night.
Now I go many more times, but I am positive, and will do all what I can in order to get this result.

Thank you a lot for your help.