Hello and Goodbye - Colectomy over and done with

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Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 8/2/2009 8:59 PM (GMT -6)   
Its been quite a while since my last post.

Last time I wrote on this forum was about August last year. I had extremely severe UC and had landed in hospital; a few hours away from death.

My UC was unable to be controlled and my choices were rather limited, if you could call them choices... They were a) laproscopic colectomy, b) emergency colectomy (non-laproscopic with large scars) once I was unable to make the decision for myself, or c) death.

So after fighting this stupid disease for 12 n a half years, I lost.

What I now ask myself 10 months down the track, is WHY DIDN'T I DO THIS SOONER!

I know the reasons. Mostly because I'm vain. And I really didn't like the idea of having a stoma and the required bag... And I also have an allergy to pain... tongue

As I was single at the time (sound familiar), I was also scared that I would have trouble finding a partner due to my aforementioned bag.

All of these worries were foolish.

I now eat and drink what I want. I go out clubbing, go out to dinner with my friends, I have a wonderful partner, awesome sex, the stoma and bag REALLY aren't a problem and the best bits; I now look REALLY hot and better still, I can sleep an entire night through without having to go to the toilet every half-hour.

I am writing this for those who are considering a colectomy, or for those who are about to have a colectomy forced on them by circumstance.

If you want to talk, feel free to email me. I live in Australia and my email address is djseverin at gmail dot com.

Best of luck to you all!

--Sev
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Currently no medications as nothing works any more;
    - Surgery is only option now, just waiting for available theatre.


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 8/2/2009 9:02 PM (GMT -6)   
ps. My signature was a tad out of date.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Currently no medications as nothing works any more;
    - Surgery is only option now, just waiting for available theatre.


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 8/2/2009 9:34 PM (GMT -6)   
Awesome!! I am loving all these happy colectomy stories! Thank you for sharing. :-)
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/2/2009 9:47 PM (GMT -6)   
Severin! I was just thinking about you the other day. Glad to hear you're doing well.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 8/3/2009 1:20 AM (GMT -6)   
AKM77 - Hey'ya. Been a while. Still catching up on how everyone's going. Colectomy was scary as all hell, but my life is amasing now.

Judilyn - Thanks for the thoughts :-) I have been so busy since the operation catching up on the 6 years of life I missed out on I haven't really been on the net other then for work. Hope you are doing well!

supersaw - Once UC becomes terminally chronic (fulminant), the immune response increases until the point where the bowel is so fragile it desintegrates. Due to its uselessness for its base function: to transfer water and nutrients into the blood stream and keep unwated substances out, you die of either dehydration (this was my case); starvation; or toxic megacolon. See en.wikipedia.org/wiki/Ulcerative_colitis#Severity_of_disease
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 29yo male. Brisbane, Australia. Diagnosed at 16yo. Now enjoying life UC free.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30603
   Posted 8/3/2009 1:55 AM (GMT -6)   
Hey Severin....I most definitely remember you!!!

Awesome news that the surgery and recovery period is finished and you're back into the swing of life!

Are you going to be having a take-down surgery or remain as is?

Thanks so much for updating us....

Be well!
quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 8/3/2009 4:50 AM (GMT -6)   
Hey Quincy :-)

I am not going to go ahead with the j-pouch surgery. I was considering it, but when I looked at it objectively with my family, friends and partner, it became apparent it was due to my vanity and other then looking good, had no other purpose.

The only further surgery I need to complete is to have the rectal stump removed at some stage. This is also done via laproscope, and thus is not really that major. Estimate recovery time is around 4 weeks from start to finish. So compared to the colectomy, its a walk in the park. Also, there is no great rush to have this done.

Just about to sit down to dinner. Tandoori chicken salad, with a side of bruchetta and white wine to wash it down. 10 months ago, such a meal would have been a week of pain!

--Sev
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 29yo male. Brisbane, Australia. Diagnosed at 16yo. Now enjoying life UC free.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 8/3/2009 7:20 AM (GMT -6)   
Severin!!!! SO happy to hear from you & most of all, glad to hear you are happy! You were in a BAD place when you last posted- I'm thrilled for you, truly. And I bet you look great! Isn't it funny, now you must look back & think "What was the big deal????". We're so afraid of the unknown. I've still got my old colon, still doing alright myself. Good for you too, about not going ahead with a pouch- I too think if I ever do get surgery, I'll opt for the perm ileo. My GI is always pushing an ileo on me, for all the right reasons. Wow, just pleased to hear you are happy. It's about time, eh?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/3/2009 7:38 AM (GMT -6)   
Hi Severin, I have been wondering what happened to you. I’m glad to hear you are doing well. I also had surgery last October 20. I couldn’t stand the Ostomy and had my jpouched connected January 21. I had a rough time with surgery and was off work for about 7 months. I’m doing much better now.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/3/2009 9:57 AM (GMT -6)   
Thank you for this post! I am going through the keep it/loose it decision myself right now! I'm so happy to read a happy bag story. And I've wondered how people decide whether to keep the ostomy or have the j-pouch. Sounds like Paul L went the other way so I don't really know what to think, but good to know other people have faced these decisions. Thanks again.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16287
   Posted 8/3/2009 11:38 AM (GMT -6)   
Wonderful to hear you are so much happier. It seems like everyone who has had surgery has only positive things to say about their life afterwards. It makes me feel like if I have to make the decision, maybe it would result in a positive change and I feel less scared about the future. I am happy to hear youre doing so well. I hope you continue to feel great.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/3/2009 7:18 PM (GMT -6)   
AmyWaffle said...
Thank you for this post! I am going through the keep it/loose it decision myself right now! I'm so happy to read a happy bag story. And I've wondered how people decide whether to keep the ostomy or have the j-pouch. Sounds like Paul L went the other way so I don't really know what to think, but good to know other people have faced these decisions. Thanks again.

 

I chose the jpouch because of the location of my ostomy. It has to be either above or below your belt line. If you have a flat stomach with a high belt line you can have the ostomy below your belt line and it would be hidden under your pants or even a bathing suit. In my case I have a larger belly with a low belt line. My ostomy was fairly high and above my belt line. I couldn’t tuck my shirt in. I went to a wedding with it and I had to roll the bag a bit to allow for my shirt to be tucked in. Even then it bulged out somewhat. I then covered it with my jacket. Doing that reduced the capacity of it by at least half and I had to empty it more often. Wearing a bathing suit was impossible. The bag was fully exposed. I also had problems with leakage and burning of my skin around the stoma. I don’t want to ever go back to an ostomy.


Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/3/2009 7:55 PM (GMT -6)   
YAY for being healthy!!!

Dont think of getting an ileo as losing or giving up, think of it as taking control and kicking UCs butt! You are literally taking your old colon out to the trash!

Anyway, glad you are happy and doing well. I am super happy after surgery, and like most people have no idea why i didnt do it sooner!
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