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xcxcxc
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/5/2009 1:33 AM (GMT -7)   
Hello everyone.

This is my virgin post in this forum. Pardon me for my bad English, terminology and whatsoever. Hopefully, I didn't post at the wrong section.

I’m 19 years old from Singapore. I always knew my mother died of colon cancer but I never knew it was inherited. Three weeks ago, my dad bought me to the clinic and at there, it was then when I learnt that the colon cancer that my mother died of is inherited and there is a high chance that I might inherit it as well. So the doctor at the clinic referred me to the hospital and booked an appointment with a doctor over there.

A week later, I went to the hospital with my stepmom and had a consultation with a doctor. Chit-chat with the doctor and he examined my rectum, eyes, head and may be some other areas as well. As my head had a bump, he suggested me to take an x-ray and referred me to another surgeon doctor. The next day, I had my x-ray done and consultation with the surgeon doctor and he told me to do a colonoscopy. Apparently, I wasn’t told anything regarding the x-ray and I forgot to ask about it during the consultation.

Two days ago, I had my colonoscopy and they found like 7 polyps and 1 red angry looking thingy in my colon. The doctor who did my colonoscopy removed the angry looking bast*, and took it for biopsy and told me it would be best to have my colon removed soon, and book me for an appointment with some consultant regarding the surgery as well as the biopsy report, to answer any doubts I or my family might have.

As my dad do not have any medical records of my mother except FAP was written in my mother’s death certificate, if I remember it correctly. So they didn’t actually do any testing to check whether if I did inherit it from my mother.

Also as everything happened too quickly (3 weeks, 1 consultation at clinic, 2 consultation at hospital & colonoscopy), I was sort of in denial over the fact that, “Hey, you got polyps and that red angry looking bast* in your colon. Say sayonara to your colon and welcome the new pouch.” I would love for sure to know that I really did inherited it from my mother (it will remove my denial, I guess).

I did some google-ing and found information like internal & external pouch as well as this forum. I wouldn’t like having the external pouch right now, I’m pretty sure most wouldn’t want it right away since it’s visible? Like I said everything happened too quickly, I have some questions I wanna asked instead of waiting for the next appointment, next week. I would be glad if anyone here could answer me.

1) What is life like with the internal pouch and the external pouch?
2) As I feel it all happened too quickly, did any of you guys also go through it so quickly? I mean, consultation, colonoscopy and right away, possibly, removal of colon.
3) I have read that because w/o the big intestine, food does not stay long in your body. Do you guys eat any supplement or whatsoever to make the loss of nutrients, if any?

There is pretty much more questions I would like to ask and clarify but while I was typing this, all the questions marks I had seemed to disappear. Sorry for this long-winded post and may be weird questions and thank you for your time.

Post Edited (xcxcxc) : 3/5/2009 1:43:43 AM (GMT-7)


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/5/2009 11:11 AM (GMT -7)   

I'm so sorry you're going through such a quick experience.  I had Ulcerative Colitis for almost two years, with very little response to medication, which is why I had a proctocolectomy.  I opted for a permant ileostomy because I suffered a great deal and having to go poo again was not on my to-do list. 

You may be a canidate for the j-pouch, which in that case you would have an external ostomy for at least three months.  You can visit www.j-pouch.org as eash of their members have completed the process, are in between surgeries, or are like yourself, preparing for surgery.

I know the external ostomy would be very difficult for you because you have not experienced great pain, heartbreak with medications not working, and quality of life has not been affected.  I can only imagine how your heart is feeling now. 

Please know that we are here to support you through your experiences.  I do highly recommend the j-pouch site as well. 

Good Luck!!! smurf


: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/5/2009 5:47 PM (GMT -7)   
This is a difficult decision...Unfortunately every one's situation is different. It really doesn't matter how long a diagnosis takes or treatment for that matter, you have to do what is right for you, and given your family history it should be a quick decision, but an educated one. Will you be able to get a second opinion? Make sure that the doc that does your surgery is a specialist and has done many successful procedures!

An ostomy is not immediately visible and many of us lead wonderful lives with them! Food does move through faster, but your body get its nutrients from the small intestine...the large intestine absorbs water...

You could also look on www.UOAA.org (Ostomy Association) website

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/5/2009 6:12 PM (GMT -7)   
This is absolutely a HUGE decision...and it is extremely personal...however, with the strong family history it is something you should take seriously.

I agree, it doesn't matter when you get the diagnosis or the talk about the surgery, nothing can really prepare you for it. I asked TONS of questions prior to my surgery and I received a lot of advice and suggestions that made my recovery much easier since I listened to what was said to me. : )

I just received my extrernal pouch, which I call my "accessory", and I've adjusted very quickly. However, again, I did have a lot of pain and the change, no matter what it was, was very welcomed.

The ostomy association site should give you a lot of great advice as well!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/6/2009 4:22 AM (GMT -7)   
Hello and welcome. I'm very sorry that you lost your mother at such a young age and are now facing surgery. sad I was also shocked when I was told that I needed to have my colon removed. It's not what anyone wants to hear, but if it can save you from getting colon cancer, then it's necessary to do whatever is possible to save your life.
 
You can have an excellent life with either a j-pouch (internal) or an ostomy (external). Nutrients are absorbed through the small intestine, so you would be completely healthy.
 
By the way, my parents lived in Singapore in the 1960's. My dad was an OB/GYN (obstetrician and gynecologist) and was there teaching women about birth control. They loved it there! :-)
 
Good luck with your research, and please keep us posted on your decision.
 
P.S. - Your English is excellent!


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.

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