No colon no joint pain?

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diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/23/2009 5:26 PM (GMT -6)   
Hello all
 
I have UC and I am very close to deciding on surgery and opting for the J pouch.  One of the many questions I have is will the UC sympton of joint pain go away with the surgery?  I am very active (well used to be) and also wonder if playing 18 holes of golf would be a problem due to urgency?
 
Thanks
 
Steve
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


NEsailor
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 7/23/2009 7:34 PM (GMT -6)   
I don't know about everyone else, but for me, the arthritis went into remission. Curious thing .... I was in the hospital and in walked my rheumatologist, who said 'What are YOU doing here?'. I told him and asked what HE was doing since I hadn't told him I was there!! Apparently he looked just enough like my surgeon (remarkably so) that he wandered by the nurse's station and they handed him my chart! He looked at the name and decided not to tell them he wasn't who they thought! Anyway, fun story. But seriously, he said quite likely 'curing' the UC with the ileostomy would clear up the arthritis. He was right! 25 years later, I'm still from time to time but much of that is beating myself up in sports!

I hope you are lucky too!

Liza D
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 7/23/2009 7:44 PM (GMT -6)   
I haven't had joint pain since my surgery. Although, when I asked my doc he said that if the inch of my colon left flares, symptoms could come back.

As for urgency, I am curious too. I still have my Ileo and wonder if the bathroom is going to be a concern then. I tell you, with UC, I worried about the bathroom, with a bag, no worries, but when that bag is gone... who knows!! My surgery is at the end of August so, I'll let you know.

I do feel a whole lot better even with a bag of pooh hanging off my belly. The UC was NOT FUN! I am so happy everyday I don't experience the pain my colon caused me!
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/


Sue030509
Regular Member


Date Joined Jun 2009
Total Posts : 39
   Posted 7/23/2009 7:51 PM (GMT -6)   
HI All

I have recently had the first surgery. I am hoping to do a resection, but in the mean time have an ileostomy. I do have some joint pain, though my Dr assures me it has nothing to do with UC or any other immune disorders. I did play 18 wholes of golf last week. Something I definately couldnt do last year. I do believe the pain will go away once I am totally better.
Sue UC 2003 ileostomy Feb 2009

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/23/2009 8:26 PM (GMT -6)   
i had some pain in my joints and other problems like a lot of headaches before surgery and that has gone away since surgery. I think some of it is related to all the meds also.

Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 7/24/2009 7:28 PM (GMT -6)   
My joint pain went away with surgery.I just met a young man who is taking humira and his
joint pain was so intense he fell to the ground and could not get up during a race we were
running. I think it is weird that drugs they use for arthritis would cause joint pain in us. Part
of the pain is the disease but a lot of it comes from the drugs you are given.

diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/24/2009 8:23 PM (GMT -6)   
Fruitcake

I agree, when I was taking Humira my joints ached bad. Right now I am doing better with regards to joint pain. I am not sure if its the budesonide or Remicade. How long where you guys out of work? I am really concerned about this.
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/26/2009 1:49 AM (GMT -6)   
im on the j pouch course, i totally recommend you get the surgery its well worth it. you will need plenty of time off from work. i have been off from work a month now and my surgeon recommends 8 weeks no work after each surgery so it doesnt look like ill be going back any time soon.

its too early to tell if my join pain will go away -but for me it seems worse , especially in my knees and hips. the remicade certainly helps for joint aches.
Age:31 Married with children.
--
Ulcerative Colitis cause: In 2003 I took Accutane for about 4 months, strong side effects of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC -should have understood the IBD warning and should've never taken the dangerous drug
known as Accutane.
May 2004- May 2009: Prednisone, Asacol and many other med's that did not work well-Remicade was great for 16 months then suddenly stopped working.
---
May -June 2009: Pancolitis- chronic 2 month flare up that put me out of work and made me seriously think about surgery.
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: Suffered 5 long years with severe Ulcerative Colitis, Anxiety and depression.
No more diseased colon. No more running to the bathroom 20+ times a day. No more cramping and bleeding. Satisfied with first surgery.


diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/26/2009 7:55 AM (GMT -6)   
Mikema or anybody

I am concerned with being off work so long. I do office work and pretty much sit all day. I could also work from home on the computer. Would that make a difference in going back to work earlier.
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/26/2009 1:38 PM (GMT -6)   
well yeah if you could work from home that would help, you could lay propped up and do it, and just rest when you needed to.

spiderman
Regular Member


Date Joined Jun 2009
Total Posts : 30
   Posted 7/26/2009 2:32 PM (GMT -6)   
Diaperman,
Recovery from this surgery is a very individual thing and anything you get told is a rough guideline. When you can return to work depends on how you feel, the type of work you do and how much you want to push yourself. I work in an office environment and sit at a desk most of the day and went back to work 6 weeks after my colectomy/pouch formation, if I had been able to work from home back then I would have started back a couple of weeks earlier. I was back at work a couple of weeks after takedown and had no problems. A couple of friends took a lot longer than that, sadly there is just no way to predict the outcome, such major surgery affects us all in different ways.


Peter

mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/26/2009 7:43 PM (GMT -6)   
sure u could work from home. I would say after first week of getting off pain medicine. My employer is very old fashioned and does not believe in work from home. They must think I would be sitting at home in my underwear doing nothing all day (they are right lol). They never offered work at home but even if they did I would tell them no thanks because my kids wouldn't let me get any work done.
5 kids umm can you imagine? "Dad, can you take us swimming?" "DAD?" turn
Age:31 Married with children.
--
Ulcerative Colitis cause: In 2003 I took Accutane for about 4 months, strong side effects of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC -should have understood the IBD warning and should've never taken the dangerous drug
known as Accutane.
May 2004- May 2009: Prednisone, Asacol and many other med's that did not work well-Remicade was great for 16 months then suddenly stopped working.
---
May -June 2009: Pancolitis- chronic 2 month flare up that put me out of work and made me seriously think about surgery.
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: Suffered 5 long years with severe Ulcerative Colitis, Anxiety and depression.
No more diseased colon. No more running to the bathroom 20+ times a day. No more cramping and bleeding. Satisfied with first surgery.


jost
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/28/2009 3:52 PM (GMT -6)   
I had ileostomy reversal in March '09. I went back to work 4 weeks later. Lightly, of course.
However, I do home maintenance an landscaping and I feel like I started too soon, or worked too hard
I am recovering from colo-rectal cancer surgery (anal verge) and the healing process is
painful almost all the time. I'm going to work from home--in another profession.

diaper man
Regular Member


Date Joined May 2009
Total Posts : 122
   Posted 7/28/2009 5:59 PM (GMT -6)   
Thanks everybody for input. I feel a little better but like most of you said its an individual thing and time of recovery will be different. I am sure I will be posting as I get closer and gather more info.

Thanks
Steve
Diagnosed Crohns/Colitis Jan 2007 changed to UC June 09.  Allergic to 5sa. Currently taking Humira Hydrocortisone suppositories, Canasa suppositories  started Remicade 06/23/09,  Budesonide. Colitis in last part of Colon.  Currently bleeding every bowel movement. 


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 8/1/2009 10:57 PM (GMT -6)   
Oh man, I sure hope that works for me!!

Another reason to be happy about this up coming surgery. Trying to think positive.

Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 8/2/2009 11:23 AM (GMT -6)   
Diaper Man,
It is an individual thing and it depends on what kind of shape you are in going into surgery.
I was in really bad shape and developed a bunch of other problems due to all the meds I was
on plus I had blood problems. The third week after surgery I felt much better. I went on a two
week sailing trip the fourth week and back to teaching in the pool after that. The hardest part for
me was the with drawl from predinsone I had been taking 80mg. a day for months. I did not
have any post op problems. Just remember to walk as much as you can as soon as you can after
surgery. I am so glad I had the surgery. I got my life back and I can work now. Before that I
missed a lot of workdays. I just ran a half marathon and plan to do another in Oct. My joint pain
went away and the only pain I have now is from my over training sometimes. Good Luck!
Fruitcake

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 8/7/2009 7:00 PM (GMT -6)   
no joint pains for me since i had surgery!

Matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


sarmiento
New Member


Date Joined Apr 2009
Total Posts : 18
   Posted 8/12/2009 7:19 PM (GMT -6)   
I'm also interessted in get colon surgery. But I have IBS, not UC. With so much pain that I can not even walk anymore. I already asked my doctor for colectmy, because meds and therapies never worked for me. But docotors don`t do colectomy for IBS. He said, that I will wake up after surgery with even more pain. They dont recomend this for people with functional disease like chronic constpation. He said that these people often develop more pain after surgery than people with UC or Crohn.
what u think?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/12/2009 9:56 PM (GMT -6)   
i know there were some people on here who had surgery for chronic comstipation

bella22
New Member


Date Joined Jul 2011
Total Posts : 8
   Posted 7/8/2011 5:58 PM (GMT -6)   
How long before you had no joint pain? Was it days, weeks or months after stopping humira? I can`t take this pain and I am considering getting off this med. I have cronh`s now for about 19 year.

Any info would really help me out

Thank you

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/8/2011 9:55 PM (GMT -6)   
It does seem to be difficult to sort out what joint pain is caused by UC and what is caused by meds. I never had any joint pain with my UC, but excruciating joint pain (I could hardly walk) after one infusion of Remicade. The GIs kept trying to tell me I had developed arthritis. I was like, really, in two weeks time? And coincidentally right when I started Remicade? I didn't buy it. I refused to take more and opted for surgery. And of course, the pain went away once the Remicade left my system in about 8 weeks and never returned after surgery. It makes me sad to see people with UC suffering from drug-induced joint pain, like the guy mentioned above from the Humira, when surgery could possibly allow them to live more pain-free. I don't know though... is it common for everyone with Crohn's to still have to take these drugs after surgery?
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 7/9/2011 7:59 AM (GMT -6)   
Once I had my ileostomy surgery done for crohns/ colitis and was weaned off all my drugs I developed Rheumatoid Arthritis, but they seem to think I probably had that for many years as well but it wasn't noticed as much because I was on high doses of prednisone for a long long time. I guess I was just one of the unlucky ones. It seems the majority are pain free in the joints after surgery. I wish you luck and take care
Doreen

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/9/2011 9:38 PM (GMT -6)   
it took me a while for all the joint pain to go away, and i do still have trouble with my knees, i think that is the pred though, it can screw up your joints. but its not nearly as bad as when i had UC, and the rest of my pains are gone.
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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