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Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 7/15/2009 6:57 PM (GMT -6)   
Hi everybody!
 
  I post on the  Ulcerative Colitis forum and a few of the "posters" over there suggested I come over here and ask about what might happen if I have to have a colectomy...   I have been in a flare now for almost a year with bleeding and YUK...   2 weeks ago my Dr. put me on 40mg of Prednisone and after 2 weeks, nothing... So yesterday he upped my Pred to 60mg.. with a maximum window of 2 weeks... and also a new drug called Apriso,. Although I'm hoping this medication will get me back into remission, if it doesn't, my doctor said I can either try a medicine like Humira or Remicade,  OR if I don't want to go that route, I can seek a consult with a surgeon to have the diseased part of my colon removed. Due to the location of  my disease, he said I'd have a permanent Colostomy bag.. and was wondering what that entails? I mean I have ideas, but not sure.... and so confused....   I just wanna feel better with the least risk to my body as far as medications.. I'd rather live a long life with a bag, (maybe)... than a shorter life with some man made chemical that I have to depend on, doing who knows what to my body....   I'm just not sure what to think at this point...   Any input would be so appreciated!!!!
Diagnosed with U/C January 31st, 2005, IBS on July 21st, 2006 
 
  Status as of June 30th, 2009 :  Flaring for the last 7 or 8 months with blood, mucus PAIN..... Meds are: Prednisone 60mg daily,  Apriso 2 pills 2x a day.. I take Xanax when needed and Ambien for sleep... Nexium in the am for heartburn..   Culturelle 2 times a day...
 
               http://www.myspace.com/77016897         


Sue030509
Regular Member


Date Joined Jun 2009
Total Posts : 39
   Posted 7/15/2009 7:17 PM (GMT -6)   
HI Susiebuddy

This is a pretty tough choice, I know for me it came down to the surgery or apparently moving into the hospital permanently, which was intolerable at the best of times. The only thing I would have reconsidered is not letting myself get so sick before doing the surgery. It took a very long time to recover simply because I was so nutrient starved going in. It has been an adjustment, but I do appreciate no more meds and the energy I need to hang out with my kids.

Goodluck
Sue
UC2003 many meds, many flareups, ileostomy Feb 2009

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 7/15/2009 7:35 PM (GMT -6)   
HI susie-
Welcome to the site. I was wondering why the doctor would only remove the "diseased part" of the colon. WIth UC, the disease can come back in other areas and eventually affect the entire colon. You might want to research that more if you decide to have surgery.

Having said that, surgery is a major step and would entail either 2 or 3 steps ( if your goal is a jpouch). If you choose to have a permanent ostomy then you would prob. just have the one surgery. I just had step 2 of the jpouch surgery- so far I have had my entire colon and rectum removed and a jpouch created from part of my small intestine. My last surgery will entail the ileostomy being taken down and the jpouch will become functional.

I tried almost every medication available including Remicade ( for a year). Nothing worked not even pred in the end. I have had a bag since March and am "used" to it so I know if the jpouch fails I can handle the permanent bag if need be, but I want to try eveyrthing before I resort to a permanent ileostomy.

How far are you willing to go via meds? This is a very individual decision. There was a moment when I just said I can't take anymore meds-- they aren't working- surgery, for me, was the only option left. No regrets.
I wouldn't hurt to get a consult now just to get as much info as you can; it doesn't mean you have to have the surgery.... I had a consult and didn't decide on the surgery for a few months after that.


Good luck
Jackie, 43
Pancolitis, DX October 06
Lexapro, Synthroid, Protonix- NO MORE PRED!!!

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps
Step 2- June 23rd
Step 3- TBA


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/15/2009 10:21 PM (GMT -6)   
hey susie,

A year long flare up sounds like you are not responding very well to the drugs. Don't feel bad because the truth is most of us do not get better with drugs. At best they mask the underlying problem.

What you posted sounds very much like what one of my first GI doctors told me. "You will need to wear a bag for the rest of your life"
He was a terrible doctor that knew very little about modern surgery and seemed like he was throwing darts with all the different drugs he was giving me.
I got so frustrated with him that I found a much better doctor who actually supported my interest in surgery and in the end he encouraged surgery since he did not want to see me suffer.
Don't wait for your GI doctor to recommend surgery because chances are he won't. Most GI's want your business so they will continue to try new drugs on you- but if you kindly ask for an immediate surgery consult then they will usually be more than willing to help you.

let's clarify a few things...although most of us here are not doctors, we certainly have enough experience with this disease to tell you that you have been somewhat misinformed.
number one, jblue is correct by telling you that most surgeons will perform a total colectomy nowadays with UC patients because the disease will likely return and start attacking the rest of your colon.
number two, you would end up with an ileostomy and not a colostomy since you would have no colon.
number three, the ileostomy would not be permanent unless you want it to be. You can have it reversed in the future with a j pouch that functions much like a new colon in due time.

You are a very intelligent person for wanting to know more about surgery but I recommend that you at least give remicade a try before jumping into a major surgery. Most people respond well to remicade treatment and achieve remission for several months. It's very effective at slowing down your immune system and has minimal side effects compared to prednisone.

You want to be symptom free when you have your colon removed so please look into remicade first.
While you are on the remicade you can plan for your big surgery a year from now.

Youtube is loaded with "UCvlog" videos by a young man named Dennis. Those videos helped me make my decision to go ahead and have the surgery worry free.
31 years old + married with children.
--
Ulcerative Colitis cause: In early 2003 I took Accutane for 4 months, permanent side effect resulted in 1 year of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC (should have never taken the dangerous drug known as Accutane).
May 2004- May 2009: Prednisone, Asacol and others meds that did not work well-Remicade was great for 16 months then stopped working.
---
May 8th-June 24 2009: Pancolitis- active chronic 2 month flare up.
June 24th 2009: elective colectomy/ileostomy at Barnes/Washington University.
August 2009: planned rectum removal and j-pouch construction.
October-November 2009: planned Reversal.
----
Summary: 5 years of suffering from Ulcerative Colitis, Anxiety and depression.


Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 7/16/2009 5:05 PM (GMT -6)   
Hey,

I'm glad you made it over here. I was surprised to see how many UCers we had on this side of the forum. Good luck with your decision. I think I told you before that I only have my bag for a month or so. I am so glad I got it but we'll see what happens after my reversal surgery. :)
UC (Pancolitis... 90%!) December 2001
Arthritis (2003)
Upper GI Ulcer (2006)
Osteopenia (2008)
Depression/Anxiety (2002)
J-Pouch May 2009

Check out my blog: shlookshlies.blogspot.com/


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/16/2009 10:04 PM (GMT -6)   
having UC is absolutely horrible and having a bag is absolutely wonderful! i think thats the easiest way for me to say it, lol.

But really, like mikeman said, you may want to try remi just to get you in remission or at least a little better because the healthier you are going into surgery the better.
I tried remi it worked for a few months then nothing. When i went into surgery i was in pretty bad shape. And still on pred. If you can help it you do not want to be on pred when you go in.

Your GI is telling you something odd by saying you need a colostomy and having the diseased part removed. If you go to a surgeon make sure you get the correct info, because like everyone said, UC will just come back if you leave colon there for it. A colostomy is where some of the colon is left behind and then an ileo is where it is all gone.
Most people get jpouches. I chose a perm ileo, cause i didnt want to do 2 surgeries and worry about the jpouch failing at some time (which is rare) and honestly i didnt ever want to use the batrhoom again!

Having a perm ileo is nto bad, its rather convenient, takes about two minutes to empty and clean when you go to the bathroom. For the first few weeks you will empty alot, but after that its down to probably 4-6 times a day, depending on what you eat.
You wear each bag and flange for about 4-7 days, then change it, takes about 10 minutes once you get the hang of it.
It wont keep you from doing anything at all. trust me i do all kinds of crazy stuff, lol. and noone will know, i promise, unless you tell them. My closest friends who i literally slept in the bed with at times (not like that, lol) and gone swimming with and all kinds of stuff didnt know for over 8 months until i finally told them, and then theydidnt care!
Anyway, i dont knowif i helped any, i tend to ramble, lol.

Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 7/19/2009 8:40 AM (GMT -6)   
Oh my gosh everyone~!!

Thank you SOOOO much for the replies~ You have given me much to think about and I appreciate and feel so much better after reading all your thoughts and suggestions! I am actually doing a little better with the Prednisone / Apriso Combo, and hopefully can start trying to taper off the pred here in another few days. Then if that fails and the Arpriso doesn't keep me in remission, then I'll definately start the Remicade and start looking into having the surgery done. I agree with you Mikeman, being healthy going into surgery would be way better than going in really sick.... And, I'd rather be healed than sick and dependant on meds for the rest of my life...

Thanks again so much for your words of wisdom!! XOXO
Diagnosed with U/C  (Proctitis) January 31st, 2005, IBS on July 21st, 2006 
 
  Status as of June 30th, 2009 :  Flaring for the last 7 or 8 months with blood, mucus PAIN.....
Meds are: Prednisone 60mg daily, 
Apriso 4 pills 1x a day.. .YEA! 
I take Xanax when needed and Ambien for sleep... Which is every day and night with all this darm PRED..
Nexium in the am for heartburn due to Prednisone..   Culturelle 2 times a day...
 
               http://www.myspace.com/77016897         


daylight
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 7/19/2009 9:33 AM (GMT -6)   
Hi;
I had Ulcerative Colitis, it started in one section and ultimately spread to the entire bowel, so I made the decision to have it removed, the GI I was seeing at the time didn't like putting people on Prednisone. I had an ileostomy for almost a year and made the decision to have the Jpouch , which I have had for almost seven months now and am very happy with. The surgeon said if it doesn't fail in the first year, I should be good for twenty years. So far so good and I feel great, which is wonderful after being miserable for so long. Also, it is wonderful not to have to take medications. I have no physical restrictions.
Linda

Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 7/27/2009 8:56 PM (GMT -6)   
Thanks Linda.. That was one of my worries.. I am an AVID horseback rider and often compete in western type events, like Team penning, which can be very physical and requiring a lot of movement, quick stops and turns, etc.... The demands I put on myself aren't HORRIBLE, but I do lead a pretty active life and wouldn't want to be slowed down by something like that. (Not that I'd let it anyhow.. hee hee...)
Diagnosed with U/C  (Proctitis) January 31st, 2005, IBS on July 21st, 2006 
 
  Status as of July 2009 :  OMG... I had a poopie today 7-23-09 (had to date that)..lol.. with NO BLOOD!!! First time in almost 10 months!!!!!!!
 
Meds are: Prednisone 50mg daily, Apriso 4 pills 1x a day.. .YEA! I take Xanax when needed and Ambien for sleep... Which is every day and night with all this darm PRED..
Nexium in the am for heartburn due to Prednisone..   Culturelle 2 times a day...
 
               http://www.myspace.com/77016897         

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