Questions about my rectum removal / ileostomy

[Paathogen]

Hello everyone..

Does anyone here have a colostomy or ileostomy? OR
Does anyone know someone who has one?

I have metastatic colon cancer (stage 4), and recently had my rectum removed and my anus sewn shut (after the sphincter muscle was removed, obviously). And I had ALL of my large intestines removed.

So, because of that surgery (called an Abdominoperineal Resection) (APR), I now have a permanent ileostomy.

I have some questions for people with experience with a colostomy/ileostomy. I already asked my doctor and he gave me the clinical answers.... but I'd also like some "practical" or "real-world" answers.

What is the normal (or average) number of times you empty your bag or change it?
If you wear a two-piece system, how often do you change your barrier (the sticky part that goes over the stoma)?

What is the consistency of your bowel movement? Is it always the same, or does it change consistency?

Is there anything you AVOID eating because of the colostomy/ileostomy?

Do you have any advice for me? Anything that you've learned about your colostomy/ileostomy that would be helpful for me?

Lastly- if you do have an ileostomy/colostomy- do you still have your anus/rectum? Or did you have them removed like me?

Thanks for your answers and advice. I know that not many of you will reply to this thread... but any answers or advice is welcome.

 

[Fiorino]

Contact your hospital and ask for a support group, there is a lot of help out there, I had a friend back East who had the same operation and ended up monitoring a support group, get the help.

 

[KaraBulut]

Paathogen:

The best advice I can give you is to ask your doctor for a referral to an enterostomal nurse specialist. These are advanced practice nurses who specialize in care of stomas and they can answer all of your questions.

 

[vulgar_newcomer]

I think he is asking for personal peer information not professional as he is well vested & trained in the field himself.
It would seem obivious that when one goes through such surgery the standard referral of support and pros trained in the field would be suggested but it is some thing different and very valuable to hear from people that are going through what you are going through and vastly different often then what a professional will clinically tell you to expect.

Jay I am thinking of you and your recovery.

Victor

 

[nsguy2]

I think he is asking for personal peer information not professional as he is well vested & trained in the field himself.
It would seem obivious that when one goes through such surgery the standard referral of support and pros trained in the field would be suggested but it is some thing different and very valuable to hear from people that are going through what you are going through and vastly different often then what a professional will clinically tell you to expect.

Jay I am thinking of you and your recovery.

Victor

Well said, vulgar.


Paathogen, I know two people in your situation - I don't know their exact situation as I'm not that personal with them - and although I've never talked to them about experiences, they live rather normal lives.

Meaning that they do most of the things they've always done and appear to be rather thankful that they're still here.

They've pretty much resumed their work and everyday activities as far as I know them to be.

I guess the particulars of their condition has never come up and I certainly would never consider asking.

Anyway, good luck to you and I hope someone here can give you better advice than I.

 

[Paathogen]

I think he is asking for personal peer information not professional as he is well vested & trained in the field himself.
It would seem obivious that when one goes through such surgery the standard referral of support and pros trained in the field would be suggested but it is some thing different and very valuable to hear from people that are going through what you are going through and vastly different often then what a professional will clinically tell you to expect.

Jay I am thinking of you and your recovery.

Victor

Thank-you very much Victor.

Yes, that's exactly what I'm inquiring about- peer experiences. I'd like to hear from people who have gone through the same thing, or know someone that has.

 

[KaraBulut]

Paathogen:

When I read your post, I saw that you were asking for peer comments. There are a lot of members here and perhaps there will be a response but it's very rare to see stage 4 colon cancer with a permanent ileostomy in your age group.

I do think working with an enterostomal nurse would help. And they are more likely to be able to provide more practical information than a physician because these nurses work with patients like you every day- it's their full time job.

 

[Paathogen]

Paathogen:

When I read your post, I saw that you were asking for peer comments. There are a lot of members here and perhaps there will be a response but it's very rare to see stage 4 colon cancer with a permanent ileostomy in your age group.

I do think working with an enterostomal nurse would help. And they are more likely to be able to provide more practical information than a physician because these nurses work with patients like you every day- it's their full time job.

Thanks for the input KaraBulut! What is an Enterostomal Nurse? Is that the same thing as my Ostomy Nurse? I do have one of those, and she's very nice... she's the one who taught me how to change bags, apply new barriers/wafer, and how to care for my ileostomy in general.

Yeah, I know that it would be hard to find someone in my age group... so maybe I shouldn't have said "peer"... what I really mean is ANYONE who's been through this- whether they're 18 or 80. The emotional experiences of having an ileostomy might be different between an 33 year old and an 80 year old... but learning about the bag/ileostomy and the system in general shouldn't be that different.

Thanks again!

 

[KaraBulut]

What is an Enterostomal Nurse? Is that the same thing as my Ostomy Nurse? I do have one of those, and she's very nice... she's the one who taught me how to change bags, apply new barriers/wafer, and how to care for my ileostomy in general.

Yes, enterostomal nurses and "ostomy nurses" are the same thing. I'm glad your physician gave you a referral since these are the specialists who have the most experience with the issues that are unique to caring for an ostomy. If the nurse didn't tell you, they also can provide some of the follow-up answers beyond just management of the barrier and drainage bag. Since they work exclusively with patients with ostomies, they often know more about the day-to-day care.

 

[Nick35]

Hi Jay,
First of all, best wishes and warm thoughts to you.....I don't have personal experience with an ostomy bag but a neighbor of ours a long time ago had one as a result of cancer surgery.

She was very active, swimming, bowling, etc. She was very up-front about it and said the contents of the bag were not consistent sometimes because of what she had eaten. She always ate lots of fresh parsley because that neutralized the scent (she said). But I never noticed any scent and we were in close proximity often for extended periods of time.
Once, we were invited to a picnic at her house and discovered later in the evening, we were the only people at the gathering who did not have colostomy bags!!!
Anyway, Jay, my very best wishes to you!!!
Nick

 

[Paathogen]

Thanks, KaraBulut and Nick35!

Karabulut, yeah- my surgeon is actually the one who introduced me to the Enterostomal nurse. My surgeon is amazing. I've had many surgeons over the past 6 years (about 12, due to my MANY surgeries) and I've often found them to be rude and impatient... and they often suffer from the "god" complex we so often hear about.

Many of the were also put off that I held the title of "Doctor" too. I AM a doctor, just not a medical one... I'm a Psychologist holding a PsyD (which is the same thing as a PhD). They felt that only MEDICAL doctors should hold that title- some even told me that to my face. That instantly put me off.

But this surgeon is amazing. He's caring, and actually takes the time to listen to me and my complaints and then ACTUALLY addresses them! He also has a sense of humor and is very friendly. I lucked out on getting him!

Luckily, all my doctors are friendly and patient. My oncologist, pain specialist, gastroenterologist, surgeon, and my primary doc are all amazing... even my nutritionist!

Anyway, thanks, KaraBulut for your adivce!

Nick35, thanks for sharing your story. Yeah, I too was concerned about the smell. However, when the bag is closed and I'm just doing normal chores or sitting down watching TV / using the computer... I can't smell the bag or it's contents. The only time I smell it is when I am emptying it or changing it. Makes sense to me.

Thanks everyone for your advice, ideas, support, and general well wishes. Keep it coming! lol.

 

[Blakiepoo]

all of that to make a guy pick up an empty ziplock?
huh?

Anyway, Paathogen, I have read that pop and greasy foods cause more gas, so you should stay away from those (especially if you will be flying on a plane).
That parsley idea is neat. I used to buy a big bunch of fresh parsley and eat it after garlic bread or sour cream & onion chips to cure my breath.

I bet there's an ostomy forum somewhere that would be uberhelpful.

Stay away from the beans, too!

 

[sillyfroglet]

I know someone in your situation. He does what is called 'irrigation' each morning. It's like an enema, and means that he washes out all the waste once a day and therefore only needs a tiny bag in case of emergencies, but generally nothing else comes out during the day. Discovering that this can be done gave him a much more positive outlook.

 

[torontoguy22]

omg! colon cancer at 33?! my heart goes out to you!

 

[Blakiepoo]

i don't think the irrigation is a good idea. I mean, you have a much shorter digestive system, and the food doesn't have as much time to get the nutrients absorbed. Washing it out even earlier would make it even harder.

If it was safe, I would only do it on very important occasions... or maybe after eating absolute junk all day.

Not colon cancer at 33! Colon cancer at like age 27! Still kickin at 33!

 

[Inwood]

I just came across this in a cursory search for ileostomy:

Since the late 1970's an increasingly popular alternative to an ileostomy has been the ileo-anal pouch. With such a pouch an internal reservoir is formed using the ileum and connecting it to the anus, after removal of the colon and rectum, thus avoiding the need for an external appliance.

That's a heluva thing to have to deal with at age 33. Good luck.

 

[Paathogen]

I just came across this in a cursory search for ileostomy:

Since the late 1970's an increasingly popular alternative to an ileostomy has been the ileo-anal pouch. With such a pouch an internal reservoir is formed using the ileum and connecting it to the anus, after removal of the colon and rectum, thus avoiding the need for an external appliance.

That's a heluva thing to have to deal with at age 33. Good luck.

LMAO! NOW you tell me! It's a little late, don't ya think? Hahaha. Just kidding.

But seriously, it's way to late to consider alternatives. What's done is done. My ileostomy is permanent- as my rectum was removed and anal sphincter cut out. As far as I know, they don't do rectal transplants!


Yeah, Blakiepoo.... I had Stage 3 colon cancer at age 28. So... everyone who thinks they don't need a colonoscopy until they reach 50.... THINK AGAIN.

 

[BenF]

Out of interest Paathogen (and I hope you don't mind me asking), what was your surgeon's rationale for carrying out an AP Resection in cancer that has already metastasised to Stage 4 disease? What are the plans for further treatment?

We would manage it somewhat differently in the UK. I am not being critical, I am just interested to see how metastatic disease is approached in the US.

 

[Telstra]

Paathogen, i didn't know u had colon cancer and rectum removed.

don't know what to say but just want to say best wishes ...