Rectal Cancer/Colostomy/Irrigation/Questions

[Kaye2003]

My husband is due to have surgery for rectal cancer in Feb/March. He will have a permanent colostomy due to the location of the tumor (rectal cancer). His doctor has also told us that he will be able to irrigate. I have been reading for weeks on many message boards concerning the surgery, hospital stay and life with a colostomy. We have many questions concerning these things and I have found that the answers are better when received from someone that is living with a colostomy themselves. I hope it is okay to post this letter on a few different boards as I am really pretty new to this part of the internet. Before I ask any questions I would like to first say that all of you have already helped us accept that this is not the end of the world for us. Just the beginning of a new type of life (but still a good life). All of you have my admiration and respect for fighting and believing in yourselves and helping others when you can. I would appreciate any time you can give to answer any of the following questions:

1. What is the average time in the hospital for this surgery?
2. Should we try to meet with a stoma nurse before he goes in for the surgery?
3. Do you need a prescription for stoma supplies? If so, can you get them at the pharmacy? (wal-mart, eckerds)
4. How long after surgery (for rectal cancer) would he start chemo?
5. I have read that you can not irrigate until after chemo. Is this so?
6. Does insurance cover stoma supplies?
7. When your bowels work in the colostomy bag, are your BMs the same consistency as they were before. Are they hard if that was what you did before or watery if that is normal for you before surgery?
8. If my husband takes a stool softener now, should he continue to do so with a colostomy?
9. How many of you go bag free that irrigate?
10. Do you still have the sensation of having to have a bowel movement? Do you know before that you are passing a stool?
11. What are the belts we’ve read about? Do they help secure the bag?
12. If you irrigate and use the plug, will it keep stool from passing if it has too? I just wondered if this is the same concept as you holding a bm until you can reach a bathroom.
13. Do those of you that irrigate. Do sleep in the plug or a bag? Can you take a lay down bath without anything over the stoma?
14. Do people usually survive Rectal Cancer? Reoccur? (sp) We’ve never even been told what stage cancer my husband has. We just know he has a pea sized tumor. Our doc said he sees no signs of cancer in the liver and that my husband can live another 20 normal, healthy years.

We would appreciate any answers and help to understand the change our lives are about to take. Thank all of you again and hopefully with our faith in GOD, family, friends and new friends, this time next year our life will be good, only different than it is now.
Please forgive this being so long. We’ve just never faced such a life-changing situation like this before and we really need help, physically and mentally.

[Jason_D]

Hi There,

Here's my answers to your questions. I'll take them in order, one at a time, and quote the question too for ease of reading.

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1. What is the average time in the hospital for this surgery?

Answer:
Most likely will have to be open surgery if he has the rectum removed therefore up to two weeks is average. However is can be a bit less if the body is a quick healer, or longer if it's not. But like I say, 2wks is average.

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2. Should we try to meet with a stoma nurse before he goes in for the surgery?

Answer:
Absolutely. Even if only so she can help him site the stoma before the operation. If he goes into the op without a stoma site mark on him the surgeon will just plonk the stoma where he feels is best for the person, but its nigh on impossible to get it right every time, and it's best to have it marked out by the stoma nurse before the op. This involves hubby, sitting, stnading, kneeling, bending back and forth, wearing trousers, not wearing trousers and so on, so that the stoma can be placed in a place away from natural body creases, away from the belt line, and so on.

It's also wise to talk to the ET/Stoma nurse pre-op as a couple, so that you can both get out the questions or fears you have.

Please note though that it isnt always possible to see the stoma nurse at the hospital just before the op, so for stoma siting it might be worth enquiring if this is best done at home, or at hospital (if she does it).

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3. Do you need a prescription for stoma supplies? If so, can you get them at the pharmacy? (wal-mart, eckerds)

Answer:
I can only answer as Brit as I live in the UK. Also you dont say where you live.... IN the UK it is a case of gettin the prescription, and the NHS presciption costs covers the cost of the bags. If his stoma is permanent he can get a exemption from precription costs for life, and not even have to pay that.

In the US and Canada its a completly different system which as far as Im aware revolves around what medical insurance provider you have and so on. Im sure someone here will be able to provide better details on that than I can. Failing that contact your local support group who will be able to give you full details on that.

Heres the URLs for all US and Canada suport groups (which are worth contacting even if you know allt he detials about prescriptions etc as they can be an invaluable source of help before the op etc.)

US:
www.uoa.org/chapters_states.htm

Canada:
www.ostomycanada.ca/chapters/chapters.htm

UK:
www.bcass.org.uk
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4. How long after surgery (for rectal cancer) would he start chemo?

Depends. Usually quite quickly - couple of weeks. Again I havent got experience of that so maybe someone here who has can advise you as to when theirs started.

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5. I have read that you can not irrigate until after chemo. Is this so?

Yes. Afterwards should be OK though, but check with GP/Surgeon first before doing it.

========

6. Does insurance cover stoma supplies?

Answer:
Depends on who covers you. Contact the insurance comp for full details of what is and isnt included.

========

7. When your bowels work in the colostomy bag, are your BMs the same consistency as they were before. Are they hard if that was what you did before or watery if that is normal for you before surgery?

Answer:
Depends on how much bowel/intestine is removed. The main function of the bowel/intestine is to absorb water. The more you lose, the less bowel there is left to do that job. If he loses rectum only, and the stoma is formed at the base of large intestine then consistency should be no different.

If he loses all the large intestine and the stoma is formed at the end of the small intestine (an ileostomy) the consistency will be liquidy all the time.

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8. If my husband takes a stool softener now, should he continue to do so with a colostomy?

Answer:
Best to check with the surgeon, depends on the reason why. If its because there is a tumour blocking the bowel and stools needs to be liquidy to pass then in theory thesoftener wont be needed once the tumour is gone and the rectum bypassed. However if he takes the softener because of chronically hard stools then it may be necessary to still take it post op depending on how much bowel is left, and so on. LIke I say, surgoen is the best man to answer that for you.

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9. How many of you go bag free that irrigate?

Answer:
I myself cannot irrigate, am not allowed. Most ppl who irrigate still wear a bag, but a much smaller one, this is just in case of accidents and also to protect the stoma from rubbing on the clothes and bleeding etc.

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10. Do you still have the sensation of having to have a bowel movement? Do you know before that you are passing a stool?

Answer:
This is "Phantom Rectal Pain". Some ppl do find the have it. Some dont. In most cases those that do have it find it disappears after a year or so, and it is only an occassional sensation most of the time anyway.

If he experiences, sitting on the toilet can help relieve the sensation. No one really knows why but its pretty much fooling the brain into thinking he's going to have a poo, when he isnt.

CORRECTION: I have just realised I have misread your question there. In answer to your question you can usually tell if you are passing stool/having a BM, however it's a very slight sensation, not uncomfortable at all (once wounds have healed), and you soon get to the point where you dont take notice of it and when you look at the bag you can be genuintelly surprised there is anything in it as you never reaslied you'd pased anything.


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11. What are the belts we’ve read about? Do they help secure the bag?

Answer:
Most two piece bags have clips on them which you clip an ostomy belt to. It's there in case the bag disconnects from the flange, or the flange drops of the skin. Frankly I dont bother with them. They dont stop leakages, they just stop the bag from falling down your trouser leg, which in six years of having an ostomy has never happened to me anyways.

My advice is see how you get on without one first. Then if necessary look into getting one.

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12. If you irrigate and use the plug, will it keep stool from passing if it has too? I just wondered if this is the same concept as you holding a bm until you can reach a bathroom.

Answer:
Do they still make ostomy plugs? Coloplst stopped making their's and they are the only ones I'm aware of. But yet, they - in theory - stop the stool. However when I tried them a few years ago for a couple of weeks they didnt stop my stool, it just just splidged out the ends of the flange and made a bigger mess. So I stuck with the bags if you pardon the pun.

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13. Do those of you that irrigate. Do sleep in the plug or a bag? Can you take a lay down bath without anything over the stoma?

Answer:
Dont irrigate. It is advisable to not sleep in the plugs, wear a bag in bed in case of the plug dislodging and stool escaping like it did with me. Even if you dont use plugs you always have to wear a bag 24/7.

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14. Do people usually survive Rectal Cancer? Reoccur? (sp) We’ve never even been told what stage cancer my husband has. We just know he has a pea sized tumor. Our doc said he sees no signs of cancer in the liver and that my husband can live another 20 normal, healthy years.

Answer:
Thats one for the Cancer support groups Im afraid, as I can only give generalised advise here. However that said I believe that so long as it's caught early it's one of the most curable cancers there is today. Still best to ask the surgeon or Cancer support groups that one though.
============

There we go. Sorry I cannot answer all your questions fully but hoefully the links and advise I've offered gives you ideas as to where you can get those answers from.

I dont know if you have already read the lifestyle guide pages of the website this message board is part of, but I can highly recommend you both have a read through it all

www.ostomy.fsnet.co.uk/
www.ostomy.fsnet.co.uk/guide.html (lifestyle guide index page).

I wish you both the best of luck for the coming months, and any other questions, queries, comments or points you want to post to us are most welcome.

Buh bye now,


Jason D. (29, UK)
Webmaster and colostomist.
www.ostomy.fsnet.co.uk



Edited to correct a misread question - 1st Feb 2004.

[Kaye2003]

Jason:
Thanks for your response and answering so many of my questions. I think the only way we will get thru this will be with help from people like yourself that understand. We greatly appreciate it and hope to one day pass the help on to someone else.
I do have one other question:
On one of the other message boards they said that the first output, bm, in the hospital really smells bad and that I should get some odor drops for this. Is this odor bad in the room at all times? Or does it just smell bad when changing the bag? I need to prepare my husband for which ever because he is a real clean freak.
Again, thanks for your help.

[Jason_D]

Hi Again,

Firstly, before I answer this post, I have just realised that I misread one of your earlier questions and gave you a wrong answer. i have corrected this. I think it's Q10, and my new answer has been added with bright yellow text to stand out.

In answer to your current post here.... yes, it can smell bad, exp if the body has any amount of bowel prep/cleaner left in it (the liquid dynamtie they give you pre op to empty and clean the bowels). This stuff can smell quite chemically, but to be honest Hubby will probably be thinking of other things when this stuff is passed. However odour drops can help but only really if added to the bag before it is applied so that it is doing the job the moment the stool hits it. Otherwise, you have to remove the bag, let the smell escape, add the drops, and then you think the drops arent working because you can smell it... but you can smell it because you had to open the bag.

To be honest, I would leave it as is myself, maybe have a can of air freshener handy just in case the smell does escape from the but it shouldnt do.

Yes, the bag contents will smell when emptied. Just the same as we all leave a smell of some kind in the bathroom when we have a poo. The smell questions have been asked a few times on here, and on various message boards to, so I'll paste one of my previous answers on how to control the smell from a bag change for you here......

--------------------------------
-=Start of Copied Answer =-

There are hundreds of different deoderant products on the market today for ostomies. Some are capsules you place in the bag, some are tablets you put in the bag, some are sprays you spray in the bag. And so on.

And whilst they can help, that is very much like closing the stable door after the horse has bolted.

Therefore if the stool does smell very bad it's worth looking at your diet to see if theres any smelly foods you are eating tonnes of.

Theres a list of 50 or so common-ish foods and drinks on the website as well as their effects on the different types of ostomsits. (O is for Odour on the list).
www.ostomy.fsnet.co.uk/foods.html

That said though, EVERYBODY smells when they pass stool. An ostomy makes us more conscious of it though. We all pass the same stuff and because we pass it thru a different orifice doesnt make it any more unpleasant - what does effect it though is the amout of time it sits in the bag, sweating, working and stagnating... pheewwwwwey... The longer it sits in the bag the more it will smell and all the deoderants in the world wont counteract that effectively.

Heres what I do and have found to be as good anything else for a colostomy change.

1. Use a 2piece appliance.
2. As soon as the stoma has finished change the pouch, or as soon as possible after that if during work hours, sleep hours etc. Pop the pouch in one of those nappy/diaper sack things(*), and give it a blast or room air-freshener, or ostomy deoderant, whichever you prefer.
Tie the handles so its are tight and smell is contained.
3. Spray the room with a good quality air-freshener.
4. Dispose of sack outside in the waste bins.

(*nappy sacks available at the supermarket if you dont get them with your pouches upon ordering.)
For me personally that works fine, and if anything it smells less than when my dad leaves the room.

Striking a match like Julie says can work but it needs to be very minor smells.

Finally, its still early days for you. 6 weeks post op. The digestive system/bowels have had a heck of a kicking during the operation and will take time to settle down. The bowels do tend to over work post op in the early days, as a routine develops they will slow down and things will cool off a little bit.

-=End of Copied Answer =-
--------------------------------------

The bag should only really make a smell in the room when it is being changed. Most of todays bags for Colostomists come with filters in them. These are designed to let the air out of the bag and to filter the smell as well. Generally they work very well. The best filter ont he amrket today IMHO is on the Coloplast Assura range. And to be honest I think they are the best bag on the market today. However what is great for me may well suck for someone else, but in the product poll held on this message board lately Coloplast products were the clear winner so it looks like many folks agree with me on that one.

Sometimes the bag can smell, and usually it is a sign that the bag's adhesive flange/base plate is either a) fitted wrong and got a crease in it to let air out, or b) starting to breakdown and that it's time to change the bag. So the smell can be a good thing at times as it's an early warning system for leakage.

Anyways I hope that helps answers your questions. If you have any more you know where we are, and you are more than welcome to post them here on to email me direct [e-mail]

Buh bye now,

Jason D.