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Posted 7/23/2009 11:26 PM (GMT 0)
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

Posted 7/24/2009 1:34 AM (GMT 0)
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!
Posted 7/24/2009 1:44 AM (GMT 0)
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!
Posted 7/24/2009 1:51 AM (GMT 0)
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
Posted 7/24/2009 2:26 AM (GMT 0)
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.
Posted 7/25/2009 1:28 AM (GMT 0)
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.
Posted 7/25/2009 2:23 AM (GMT 0)
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.
Posted 7/26/2009 7:49 AM (GMT 0)
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.
Posted 7/26/2009 1:55 PM (GMT 0)
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.
Posted 7/26/2009 7:38 PM (GMT 0)
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.
Posted 7/26/2009 8:32 PM (GMT 0)
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
Posted 7/27/2009 1:43 AM (GMT 0)
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
Posted 7/28/2009 9:52 PM (GMT 0)
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.
Posted 7/28/2009 11:59 PM (GMT 0)
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
Posted 8/2/2009 4:57 AM (GMT 0)
Oh man, I sure hope that works for me!!

Another reason to be happy about this up coming surgery. Trying to think positive.
Posted 8/2/2009 5:23 PM (GMT 0)
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
Posted 8/8/2009 1:00 AM (GMT 0)
no joint pains for me since i had surgery!

Matt
Posted 8/13/2009 1:19 AM (GMT 0)
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?
Posted 8/13/2009 3:56 AM (GMT 0)
i know there were some people on here who had surgery for chronic comstipation
Posted 7/8/2011 11:58 PM (GMT 0)
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
Posted 7/9/2011 3:55 AM (GMT 0)
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?
Posted 7/9/2011 1:59 PM (GMT 0)
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
Posted 7/10/2011 3:38 AM (GMT 0)
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.
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