Ileo for Ulcerated Colitis - do you still have external manifestations

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Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 1/30/2011 9:37 AM (GMT -6)   
Hi All,

Wondering if your enjoying all his snow in the Northeast, or have you had ENOUGH!

For those who have had total removal of your colon for ulcerated colitis, did you feel better after the surgery? And do you still have the side effects from the ulcerated colitis, like arthritis after surgery, or do these manifestations go away? I hear so many people feel better after the surgery/ostomy, but do understand it's a different way of living.

I'm 54 and have had the disease for 23 years, last 2 years on prednisone and other meds, can't take humira and remicide, only thing that keeps it in remission. So Tired of Prednisone....I'm sure others are too....

Salamore/Renee

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 1/30/2011 10:13 AM (GMT -6)   
Hi Renee,
I had Crohn's Colitis (with a 15% chance that it was UC), and I had surgery last March. I IMMEDIATELY noticed that I felt better. I wasn't tired all the time, I didn't feel run-down all the time, and I was able to get off the 60mg of pred that I'd been on for a year. I have been having some extra-intestinal side efffects from the colitis, and they are slowly going away. It's taking a little longer for those things to subside but I can tell they're better.

From what it sounds like, you need a break...I and so many others are so happy to be able to live our lives again. HOpe you feel better soon!
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!! :)

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 1/30/2011 10:16 AM (GMT -6)   
I had the 1st step of 2 and I do feel better. I wasn't able to sit on the ground because of the arthritis...my hips and knees hurt so bad. Now I have no pain in those areas. It feels strange not to have that pain, but I am so happy!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 1/30/2011 10:39 AM (GMT -6)   
Hi 80's Chick and Disneynut66,

I am turning 55 this year and am overweight, so I hope that won't be an issue!

It is so encouraging to hear the good results after surgery. So many people that don't have these diseases don't understand why I want the surgery, they haven't suffered like us, all the meds, fatigues etc. I had a women at work who had to take 1 pill for high cholesterol and she was complaining from the side effects. I wanted to say to her try taking 20-25 pills a day and enemas and see how you feel! People are so quick to judge...umm!

thank you,
Renee

Post Edited (Salamore) : 1/30/2011 2:08:46 PM (GMT-7)


Christine1946
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Date Joined Aug 2008
Total Posts : 5975
   Posted 1/30/2011 1:30 PM (GMT -6)   
     I hear ya Renee!  My husband always complained about taking a pill for high cholesterol (which he no longer takes because it gave him muscle cramps) and Nexium.....poor soul.  I told him he would die if he had to go through the agony I went through..lol.  He said he probably would..lol. 
     You may have read my past posts, so I will make this short.  I suffered for 12 yrs with ulcerative proctitis.  Diagnosed at age 52.  Became prednisone dependent from March of 08 until I had my total colectomy with end ileostomy on June 28th, 2010.  I went from taking 17 - 25 pills daily plus rectal meds down to 1 pill for my high blood pressure.  Prednisone gave me osteoporosis, high blood pressure and Type 2 Diabetes.  The osteoporosis I will have the rest of my life.  My blood pressure is extremely well controlled with one pill instead of the three I used to be on and my Type 2 diabetes is gone.  Remicade and Humira failed to keep me in remission.
     My surgeon would not do a J-pouch on me because of my age and extensive use of prednisone.  When I told him I had no problem wearing a bag, he immediately scheduled me for surgery.  After my surgery he told me I made the right decision as my rectum was badly diseased.  My paternal grandmother died from cancer of the rectum and I remember how she suffered.
     I still have some issues but by FAR am sooooo much better.  I am now 64 yrs old and hope I still have many years left.  Good luck to you.

Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 1/30/2011 4:15 PM (GMT -6)   
Hi Christine 1946,

I Never get tired of hearing your stories, it always keeps it REAL for me!
I have followed your post on this forum, and have been inspired!

I recently have been dx with ostenpenia, but when I take Vitamin D and/or Calcium I get diaharrea - I still have problems spelling that DARN word - so I can't take either. I try sometimes to take D every 3rd day, but it stills gives me problems.

Are you able to take vitamins, once you have the surgery?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/30/2011 4:36 PM (GMT -6)   
     Thank you for the compliment!  I hope I can help others and feel good when I do.
     I take the chewable calcium with D, Walgreen's brand.  I believe they are 1200 mgm.  The multi vitamins I take are the gummy ones...tastes like gummy bear candy.
     I just discovered an abscess in my gum, which I probably had for the last two weeks, but was too concerned about taking care of my "woman" problems..lol.  I finally looked into my mouth with a flashlight and asked hubby what he thought and he said,  "Holy cow....you have an enormous abcess!"  It really only hurts when I touch my face.  Just my luck it was a Saturday night.  However, my doctor has an oncall service and I was able to reach it.  I have some Bactrim here at home left over from my urinary tract infection back in Oct, so I was told to take that and get to my dentist tomorrow.  UGH...always somethin.  I hate going to the dentist.  I have a mouthful of caps..lol. 
      Yes, I am in the Northeast....Bellmawr, NJ, exit 3 of the turnpike and I am getting sick of this weather.  Latest I heard was a rain event for Wednesday and I sure hope it is just rain.

Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 1/30/2011 5:17 PM (GMT -6)   
Christine,

Me too loaded with caps, wonder if it's because we can't get all our nutrients!

Tell me about it, my husband was trying to rake some snow off our roof, we are starting to get leaks in our little computer room. We have no where to put all the snow, if we get more like predicted for Wednesday afraid it could shut down the state of CT.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 1/30/2011 5:32 PM (GMT -6)   
Yes, you'll be able to take vitamins. Chewable is best to make sure you absorb it all once you have no colon. I also take a gummy multi and a calcium, as well as vitamin b12 and biotin to take care of some hair loss problems.
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!! :)

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 1/30/2011 8:36 PM (GMT -6)   
Hubby's surgery was 6 weeks ago. He was up walking the next day with a podium waker. It wasn't easy but necessary. His pain for a few weeks was due to the surgery/incision but each day got better and better. But it was so different to have his usual UC discomfort, medications, frequency and urgency to now be gone & was kind of liberating. We both did a lot of research beforehand and knew what to expect with the ileostomy, wafers, pouches, changing etc. So it wasn't too difficult to get the hang of it all.

Fast forward to 6 weeks after surgery and we are now on our own and doing fine. So far so good and adjusting very well. He reached the point in time that surgery was necessary for many reasons and not regretting it. It is a change in lifestyle that needs some getting used to but for him he hasn't really had a problem with it and honestly feels he is now in charge and control finally.

Instead of 8 weeks he will be a bit more conservative and wait 12 weeks before golfing...probably because I'm asking him to...lol.

Good Luck and keep us posted
64 yr old male --suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/30/2011 9:55 PM (GMT -6)   
     UC wife.....being off all those meds sure is liberating!
     Salamore....I believe I absorb more nutrients now than when I suffered with UP.  I have had teeth problems for years!  Since I was a kid and a candy fanatic.  I used to love Mary Janes but OMG..what a number they did on my teeth.  I haven't touched them for years but still yearn for them..lol.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/2/2011 10:23 PM (GMT -6)   
i woke up and thought, "wow i feel better" then i thought "*(^&%^ this hurts!!!" then i thought, "omg what have i done" then i thought, OMG i feel better!
But really, i woke up and i felt clean, its hard to describe though. I could feel that the poison was out of my body that it was finally over!
My eyesight actually went from -675, -650 to -550,-525 and most of the joint pain went away, i still have a free problems, i think thats from the pred though. I had this problem with my hands breaking out and busting open and bleeding, that has mostly gone away.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!
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