People who have had surgery.. joint pain?

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Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/5/2009 4:22 PM (GMT -6)   
Ive been flairing pretty decently all fall/winter long with whatever i have...UC or chrons.   I had to bump up prednisone back to 30 after being off 2 weeks and me and the GI are hoping that in a month or so the changing of the seasons will put be all the way back into remission so the 6mp can start working fully
 
However, that might not happen so I have to plan for alternate routes.  My chief complaints now are incredible fatique and very bad joint pain.  my BM's are loose but not very painful and i don't have much urgency..i got like 3-6 times a day.
 
For people who have had surgery... did that also eradicate the joint pain?  I almost can't stand it.  its brutal.  Remicade for me will be an option initially too..but i'd like to have some comfort in knowing that if i decide to hack out the colon, everything disease related will clear up or generally clear up????   wishful thinking but would be nice to know :).
 
Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: Coming out of flare -9/19/08 - now|Salmonella - 11/15/08 - 11-29-08|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 4 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 5 mg (tapering)|6mp 50 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .275 mg (tapering through water titration)|Trazodone 50 mg|Doxycycline 200 mg
 
 
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 2/5/2009 5:02 PM (GMT -6)   
I had the first of a 2 stage j-pouch surgery last October 20. I had very bad arthritis throughout my whole body. Immediately after my surgery it completely went away for about 6 weeks then it slowly came back. After another 2 weeks it was just as bad as before surgery. I had my second stage surgery last January 21. After that my arthritis improved considerably but did not go away completely like it did with the first surgery. It has been 2 weeks since my second surgery and I wouldn’t be surprised if my arthritis comes back with a vengeance. I sure hope not but I have to be prepared. I have heard mixed stories about arthritis and joint pain after surgery. Don’t consider arthritis and joint pain as a reason for surgery. If it improves afterwards that is a bonus.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/5/2009 8:31 PM (GMT -6)   
Understood Paul. For me its the crazy fatigue, general sick feeling, constant low grade fevers, and joint pain. The joint pain seems to be like the first thing that shows up before a flare, then fatigue, then fevers, and then stomach issues. Hopefully eliminating the source, will also eliminate everything else but i guess you just dont know. I've been following your progress and I wish you all the best with your healing :).

Anyone else have stories where they had surgery and everything else improved... not just the stomach issues?

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: Coming out of flare -9/19/08 - now|Salmonella - 11/15/08 - 11-29-08|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 4 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 30 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg (tapering through water titration)|Trazodone 50 mg|
 
 
 
 


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 2/5/2009 9:22 PM (GMT -6)   
Prior to having my surgery I had many problems associated with UC or side effects of the medicine that have since gone away.  Joint pain, fatigue and vision problems were the three big ones.  I am not sure how much of it was from the UC and how much was caused from all of the prednisone but now, almost a year post surgery, all have improved greatly with the fatigue being a distant memory.  I was still on prednisone when I had my first surgery but tapered off of it within a month or so after that.  I used to have joint pain to the point that I couldn't move many mornings and now I have very few joint issues.  My vision was so bad that I had to wear glasses, I haven't worn them for six months now so that has improved dramatically also.  Again, I can't say how much of them were from the UC and how much were from the medicines.  Hope this helps.
 
John

Total Colectomy with End Ileostomy May 27th, 2008


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/6/2009 6:05 AM (GMT -6)   
Thanks John. That gives me hope. I am hoping this batch of 30 mg of pred and then taper off until spring gets me into remission at least for a little while so I can get my head back on straight. But in the meantime... i will enjoy insomnia and head racing like right now!!
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: Coming out of flare -9/19/08 - now|Salmonella - 11/15/08 - 11-29-08|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 4 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 30 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg (tapering through water titration)|Trazodone 50 mg|
 
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/6/2009 8:24 AM (GMT -6)   
I had surgery 7 years ago and the only joint pain I suffered from my UC ordeal was due to the prednisone taper. The pain along with the fatigue lasted about a year post surgery. Your joint pain may or may not be related to prednisone but since you seen to be in extreme pain you might want to see a rhuemetologist to get an evaluation. UC can have manifestations that include joint pain that may or may not resolve with surgery.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 2/6/2009 9:14 AM (GMT -6)   
Hi Vin,
I don't post here often, I used to when my daughter suffered from UC before she went through the jpouch surgery.  I check here periodically to see if people are posting about joint pain.  I want to raise awareness about another possible cause for joint pain that I feel isn't disclosed to those who must take prednisone. 
 
My daughter developed joint pain in her right knee in sept 07.  She had her jpouch surgery Nov 06.  Her knee was swollen and painful, her elbow also started to hurt.  After seeing her primary for x-rays and a rheumy for bloodwork that all came back negative for RA, she suggested an MRI.  That is when we discovered that she had Osteonecrosis (aka avascular necrosis).  This will not show up on regular x-ray until it's has progressed to stage three, so during stage 1 and 2, you may not even know you have it.  I'm not trying to scare anyone, but just be aware that this could be another reason for your joint pain...especially if you have pain in the hips/knees/shoulders/ankles.  If you have pain in any of those areas, it's in your best interest to insist on an MRI to rule this out.  If you don't have it, great, but if you've been on long term (longer than two months), and high dose (greater than 20 mg), experts in the field of Osteonecrosis (ON) strongly advocate for MRI.  Most often, steroid induced Osteonecrosis is bilateral, so if it's found in one joint, it's most likely in the opposing joint as well. 
 
She was on pred for almost 4 months, highest dose of 90 mg of IV solumedrol while hospitalized.  She has had extensive MRI of all of her joints and we now know that she has it in her right shoulder, both elbows, both knees, and both ankles.  We found a ortho surgeon in Baltimore who specializes in the treatment of this disease who is especially concerned with saving a person's joint, so early detection through MRI is essential. 
 
The following is from a study by Klingenstein:  "Conclusion: IBD predisposes patients to corticosteroid induced osteonecrosis. An exact threshold dose has not been determined. The data suggests that either long term therapy or short term high dose treatment increases the risk of osteonecrosis. Even if symptoms are limited to one joint, multiple joints are often involved and comprehensive testing with MRI is indicated in all cases."
 
This is from a report by Dr. Michael Aiello: "The risk of AVN is greater risk in patients treated for a short duration (6 wk) with high doses (³ 20 mg). The risk of AVN in association with low-dose steroid therapy is controversial. Some studies link such therapy to the disease, whereas others indicate no such link. High doses of steroids administered within a relatively short period are more of a causative factor than the cumulative dose or the duration of therapy."
 
I'd post the links, but I don't think it's allowed here.  I'm honestly not trying to be the bearer of bad news, but to raise awareness of this possible risk..so that you are informed and can ask questions of your doctors. 
 
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 2/6/2009 11:16 AM (GMT -6)   
Just so you know (since you mentioned Remicade), for the past 2+ weeks I've been having extreme pain in my feet, ankles, and then finally it started migrating up to my knees. It got to the point where I could hardly walk in the morning, I couldn't walk barefoot without much discomfort, and my left ankle swelled up to almost twice its size. I had my first Remicade infusion yesterday, and today I have no pain in my joints and the swelling has gone down. I don't know if it's from the Remicade but I can't think of any other explanation... Even taking Ibuprofen didn't help for more than a few hours. So if you go that route, I hope it would help you as well!
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg
First Remicade infusion 2/5/09


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/6/2009 12:58 PM (GMT -6)   
Buckeyeinfl,

Thanks for the info. My concern is that specifically. Ive been on pred since september..i came off it briefly in january..and now im back up to 30 mg for 6-7 days, 25 6-7 days, etc. my joint pain today is pretty much gone and i don't feel sick so i think the steroids are doing their job short term. My joint pain seems to be directly correlated to disease activity. A flare is coming when I start to get joint pain....then fatigue the next week... then fever... then stomach activity.

Once i can get to around the 10 mg mark, I will go see if i can get an mri on my joints and see if theres any nasty damage going on. God, I hope i can get off the steroids without having to go on remicade or get surgery!!

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 30 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg (tapering through water titration)|Trazodone 50 mg|
 
 
 
 


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 2/6/2009 1:11 PM (GMT -6)   
Hi again,
That darn pred is aweful stuff. You don't have to wait until you come off of it for an MRI...if ON is there, it'll show up. If you don't have it, GREAT...at least then you'll have peace of mind.

For some, it's a miracle drug, but deep down, I feel like it's just masking the symptoms...then when you do come off of it, wham-o! So, at least you're aware of the risk of osteonecrosis...many don't even know what it is, what symptoms to look for, or what to do about it. MRI is the first step...my daughter's first MRI showed "bone infarcts" which means bone death. I took her to the MAYO clinic in FL and was so disappointed in them. We were told there was nothing they could do until her bones started to break down and collapse, which, if you talk to an ortho who specializes in the treatment of the disease, is so far from the truth. My daugher's ON was caught early, stage 1 or 2 and she's gone through core decompression in the hopes of halting the progression of the disease. Had we listened to the mainstream orthos, we would not have sought out early not very invasive treatment to save her joints rather than wait for them to collapse. So, there is hope, but if others who've been on steroids, it's best not to stick your head in the sand and believe that it won't happen to you.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/6/2009 2:37 PM (GMT -6)   
yea.. its just everything is kind of overwhelming right now and the last thing i want to believe is that this will happen to me too. but maybe ill see if i can get an appt for next week or something and start the ball rolling. I will regret it if i don't.

Thanks for your help!

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 30 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg (tapering through water titration)|Trazodone 50 mg|
 
 
 
 

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