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    i am starting to really get nervous about the surgery but know it is the best thing for me.  i was diagnosed with colitis just over a year and a half ago.  i am on asacol, rowasa, imuran, prednisone, iron, vitamins, remicade and the docs have maxxed me out on a lot of the things.  i have had good stages but nothing lasting more than 4 or 5 months.  i have also been in and out of the hospital for at least 3 months over the past year and a half.  everytime they try to take me off or taper my steroids i get extremely sick and wind up in the hospital.  i also had a bad case of pyoderma gangrenosa the last time i was in the hospital and have been anemic numerous times.

my biggest concern is pain and having the bag.  being 29 and recently married i just don't want to have a bag the rest of my life.  i opted to go with the j pouch which my surgeon at duke said he would perform the 2nd surgery most likely 2-3 months after the first surgery. 

i have seen some people bash the j pouch on the board and was curious as to why.  i know a guy that said he had to go to the bathroom 5-6  times a day still but i am currently like that anyways and when i am sick i am in the bathroom 15-20+ times a day along with throwning up.  this disease has been *** me, my wife, family and work.  i feel like something needs to change and surgery is the option.  also with the amount of prednisone i am on (have been as high a 60mg and currently on 30mg) the doctors have given me the side effects that i may or will face.  anytime i get below 10-15mg i become extremely sick.  the remicade also has bad side effects and my immune system is non-existant. 

sorry to ramble on but i am scared about everything coming up and would like feedback from people about pain and the j pouch.  thanks.

nate

 Reply posted for gvillevols.

It's normal to worry about the surgery.  I know I did.  I'm having my take-down (part 2) surgery next Tuesday and I'm very excited.  The three months goes by quickly.  I was in a lot of post-op pain; but, they take really good care of you with pain meds. You'll probably have an epidural-type device and a patient pain pump the first few days in the hospital.  If your spouse or a relative can donate blood, it might be a good idea to have someone donate to you about two weeks prior to your surgery.  I was told that I probably would not need a blood transfusion, but ended up having to have two before I left the hospital.

They will keep you comfortable.  I didn't like the bag much at first. Actually, I hated it;  however, you do get used to it over time and you just have to keep in mind that it's just temporary. 

Don't let the horror stories scare you.  There are TONS of people who are happy with their J-pouch.  It's just that people who are scared or having problems will typically turn to the internet.  When all is good, people go about their daily lives and don't even think about going to the net.  If you google j-pouch success stories, you can find a site that has tons of j-pouch happy-ending stories.  I highly recommend it. 

Best wishes to you and your family as you embark upon this serious journey.

Shawn

 Reply posted for beachlvr.

Hi,

Unlike Crohn's, colitis usually starts in the rectum. A total colectomy procedure requires the removal of ALL of the large intestine, and most of the rectum.  This creates the need for a temporary bag until the pouch heals and is able to be connected to the remainder of the rectum.

I think this is why this gentleman has to have the bag.

best to all!

 Reply posted for gvillevols.

My surgery was AWESOME.   I was diagnosed at 30 years of age and lived with colitis that progressively worsened and rarely went into remission.  I have tried all the treatments over the past 13 years with several hospitalizations and now a completely shot immune system and negative effects from years of drug treatment.  I also searched for natural remedies which may have soothed the disease but was never a cure.  My colon was so scarred the doctor said he could only imagine the extreme pain I have lived with -  Well he was right!  I was in denial for years and lived a lie that "I am doing better".  Finally, surgery was the only option after contracting MRSA.  You know the drug treatments weaken your immune system.   I researched my surgeon and he is recommended as the best in the state, one of the very top in the South East  So,that was really the BIG thing for me - the right surgeon.  TO MY Surprise-I loved my ostomy pouch and kicked myself for not getting this done sooner....remember I lived in severe pain everyday of my life - so this was awesome. I was able to have visitors after 5 days and they said my energy and spirit were high just from removing that "nasty" defective colon.   Now, the surgery was MAJOR...and I needed a lot of recovery and help, but I thank God each day that I finally had it.   Contact the local ostomy support group, they were able to help me "real Life" with how to work the ostomy and what to expect.  MAKE SURE your stoma is out far enough from your stomach or you could have problems like I did with a recessed stoma which made the ostomy supplies / bag difficult to stay on.   The surgeon, is the one make your stoma during the surgery (the photos of a stoma are ugly but a protruding stoma is far better than a recessed stoma.)  Good luck...I hope this helps...

 Reply posted for gvillevols.

I have crohns for thirty two years now with my first surgery in January 2008. Talk about being scared i know the feeling i was having anxiety attacks every day. I really had no choice anymore but to have surgery the main thing is do you like your doctor and surgeon? Over a thirty two year period I had many doctors some who totally screwed up things so I was quite nervous about who was cutting into me. Why did they tell you that you need the pouch? Im asking because I had a draining fistula for 10 years and my stomach was so diseased i would have bouts of phenumonia. So they cut half my stomach took a big peice of colon and a section where the fistula was and there was no need for a bag. I had a eight hour surgery, the doctor i had was so determined to make sure i was good to go for a long time he put back my stomach then took it apart again because he didnt like the way it looked the first time, this is the work of a docor who really cared about his patient. I feel there is nothing more important than your confidence in him. As far as the pain i can honestly say there was very little.Just gas after which laid in my rib cage area which was the worst of the whole procedure. In this day and age we are better off than even a few years ago... dont suffer anymore you will be fine.good luck

 Reply posted for gvillevols.

I used to be treated at Duke when I was first diagnosed at 11. They are really good. My mom worked for one of their GI docs and they are the best. I know what you are going through with the flare and all the meds... been there still there but I hope that everything goes well for you!

 Reply posted for gvillevols.

Nate,

 

I am struggling with Colitis too.  I have know for about 2 years.  I have never spent time in the hospital for it or been enemic but I have been on steriods for a while and I need to get off them.  I just started Remicade and it hasnt helped much yet.  What side effects did you have?  The only side effect from anything I have taken (and thats almost everything) is the predinisone mood swings.  Even that doesnt seem to have the same effect.  My biggest fear is not being able to work.  My worst days are going about 10 times right now and best days are 3-4 times.  Right now it seems like more of a inconveience more than anything.  I would make sure you exhaust every option before doing it and get several opinions.  That is what I plan on doing.  You have done more than I have so far.

What is your quality of life now?  How good will it be afterwards?

That is what I am trying to answer and right now I dont think I will be better off enough to do it at his point.  You may be but only you can answer that.

 

I wish you luck in making the best decision for yourself.  Either way you will be fine.  I tell my wife that there could be worse things to have to deal with, there always are.

 

Pete