What might happen if I don't have the Colectomy?

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KVail
Regular Member


Date Joined Aug 2011
Total Posts : 22
   Posted 9/12/2011 5:55 PM (GMT -6)   
Hello all!
A quick background:  42 year old female, have always had pretty extreme constipation, i.e. as a kid, maybe once a week, progressing to the last two-ish years where I don't have any bm without laxitives and enemas.  In order to get any result, I currently have to take triple doses of Myralax, a bottle of Mag Citrate and two Fleet enemas.  I've tried diet changes, lifestyle changes, all sorts of different meds (RX and OTC), plenty of "natural" remedies from homeopaths, etc.
Had Xrays last year over a couple of days, and dr.s could see I wasn't exaggerating, and it hurt--but that's been standard for awhile.  Had a colonoscopy, it was fine.  Did a Sitzmarker and it was text-book Colonic Inertia.  More than one Dr. gave this diagnosis.  Specialist said it wasn't due to my diet (or anything else I could have done, like a sports injury or C-section not done right), but was genetic.  All recommended sugery to remove the colon and attach the small intestine to the rectum.
Have already talked to the surgeon and set the date for operation as Oct 10.
But I woke up this morning strongly thinking "Why on earth am I doing this?  I'm used to living this way, and it's not great to spend evenings with an enema and drink that HORRIED Mag Cit, but is it really worse than having such major surgery?"  I don't know any other way of life and there certainly isn't any guarantee that going to the bathroom 10+ times per day is any better!  Also, there are lots of great people on this board, very happy with their bags, but I just really, really can't stand the thought of a bag/pouch.  Dr. says my chances are slim of getting one.  But about down the road...complications?
Sooo....why not just skip surgery?  What is the worst thing that can happen, other than that I would continue living this life I now know?  I ask the Dr.s, but I think they are afraid to predict one way or another.  They just observe what the test and symptoms show, and say surgery is my best option for a "normal" life.  They say they can't imagine what my life is like, only I can.
I do have times of a lot of pain, but okay days, too.  I'm not thrilled with the laxatives/enemas.  But this seems like a huge risk just to avoid not being able to have a BM on my own.  So:  What are the worst scenarios if I don't have surgery?
Thoughts, please??
Thanks!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 9/12/2011 6:17 PM (GMT -6)   
I can't say for sure what would happen...no one can. Here are my thoughts, though:

1. It is SO COMMON to get cold feet after planning surgery!!!!
2. I had Crohns's, not CI, but I can tell you that I can pretty much guarantee your life will be better after surgery.
3. If it has been getting progressively worse, then why wouldn't it continue to?

It sounds like your life is NOT normal, so I'd chance it if I were you. My life is SO MUCH more close to normal with the ostomy than it has been in the last 10 years with Crohn's.

But none of us can decide for you...all we can do is tell you our stories and give you support. If multiple doctors suggest it, I would say it sounds good.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 9/14/2011 12:39 PM (GMT -6)   
I went through exactly what you're going through before I had surgery back in July (check out my older posts!). I couldn't quite accept that I needed surgery to treat what was essentially 'constipation' (of course we all know that CI is much worse than that..). I was battling on with laxatives etc etc. I 'thought' I had about 70% quality of life and perhaps I could just carry on like that... anyway I eventually made the decision and went for a permanent ileostomy and as you know have not looked back. I feel like a million dollars now and can do anything, eat anything and for the most part I forget the bag is even there. My life wasn't 70% at all.. I'd just got used to living like that. Compared to how I feel now it was about 20%.. I totally made the right decision.

What is worst scenario if you don't have surgery?? well you can carry on living like this.. feeling awful, drinking mag cit and using enemas. Does that sound like fun for the rest of your life??? It's not normal and you have just got used to living like that. Believe me there is a better life out there!!

Of course none of us can tell you what to do, but what is the alternative?

What you're feeling right now is totally normal. It's completely understandable to have cold feet. It's a big deal. But you'll get through this, feel a million times better and you'll be on here in months to come saying how much better you are and how you wish you'd done it earlier! I agree with Stephanie 100% - she said exactly the same thing to me 3 months ago!
Good luck Sarah
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June/Oct 2010 - Peritonitis/perforated diverticulitis. Sigmoid colectomy, temp ileo then reversed.
DX Colonic dysmotility.
July 2011 - Permanent end Ileostomy after begging surgeon to put it back
Follow my blog - http://bagthatruns.blogspot.com/

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/15/2011 9:27 AM (GMT -6)   
I completely agree with the other comments, I understand exactly how you feel too although I have an ileostomy and it was done as emergency surgery so I really had no option and I didn't have time to get cold feet but if I had known years ago how much better I feel I would have wanted it done a long time ago. I must admitt I hated the thought of living with a bag as well and it took me about a year to get used to it but now its just great. There is nothing I can't do anymore and I look forward to new adventures every day and that was something I could only dream about once. My mother has suffered with severe constipation all her life and she is miserable its a shame she is 78 otherwise I think she would jump at the chance of not having to give herself enema's all the time and she also has to drink magnesium citrate regularly just so she can go. I really feel for her.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 9/15/2011 9:29 AM (GMT -6)   
sorry i have a new lap top and pressed enter before I was done lol. Only you can decide how you want to live but I would be taking the advice of the doctors and wish you well.
Take care
Doreen

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 9/15/2011 7:16 PM (GMT -6)   
Question for those of you that have an ostomy due to CI........what effect did it have on your weight after the surgery?

Dan
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