could this just be my colon saying "give up already!!" ??

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 4/18/2009 12:54 PM (GMT -6)   
So lately, I've been feeling like I'm just on my death bed. It started Sunday, with some mild pain in my knees. But by Monday afternoon, it felt like I had developed SEVERE arthritis in every single joint in my body, no exaggeration. Tuesday morning I had a fever of 103. I have had a fever every day since, it goes up and down but when it's down it's at 99. The pain was... excruciating. A couple of times I wanted to go to the emergency room but I couldn't get off my couch. Most of the pain has been in my legs, it feels like my calves are in a constant charlie horse, and my knees and ankles are swollen and feel like they have been smashed with a sledgehammer, and my feet are just tight and swollen. My fingers are too sore to make a fist, I can't touch my own shoulders because my elbows are too stiff. On top of that, when I take a deep breath, my chest, abdomen, and lower back, mostly on the left side, really hurt.

I went to my primary care doctor on Thursday. She sent me for blood work, a chest xray, and an abdominal ultrasound. The scans came back okay but she said the blood work looked really. Everything that says inflammation/infection was WAY elevated. But now she doesn't know why. So when I saw her for a follow up on Friday she sent me for a CT scan with barium contrast and IV dye. Just not fun. I was shivering which made the pain worse so I'm sitting on the table trying not to cry feeling miserable and just wishing they would tell me what's wrong.

I still haven't heard the results of the CT scan but I'm guessing they didn't find any thing too pressing.

So my thought is. If I have an infection every where that's cause total severe body pain, but all of my organs LOOK okay from the outside... Could be that my body is saying "ENOUGH IS ENOUGH!!!" My last CBC was in February but that one and four before it all showed elevated white counts so I'm assuming it's been up for awhile.

Weird thing is, my stomach has actually been acting okay. Well, it WAS... But I've been popping so much Ibuprofen for the pain and I was prescribed Cipro & Flagyl for a "suspected bladder infection" even though I have NO symptoms of a bladder infection. So I anticipate a flare up now. I just can't avoid taking the NSAIDs because the pain is so unbearable I don't know what else to do.

Any thoughts?
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
3rd Remicade infusion 3/19/09


aned
Regular Member


Date Joined Mar 2009
Total Posts : 105
   Posted 4/18/2009 1:14 PM (GMT -6)   
I had the body aches, fever and horrible joint pain that you are describing over a year ago on vacation in Mexico. I had no UC symptoms so I thought it was a bug I had picked up there. After several days I started to think I might live again...then BAM...the worst UC flare I have experienced so far. Looking back I do think it was all related to the UC. I would stay in close communication with your doctor and continue to rest and take good care of yourself. Good luck and I hope you feel better soon.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 4/18/2009 1:18 PM (GMT -6)   
Sounds like the Remicade left you vulnerable for some kind of infection that your doc hasn't been able to identify yet. It might be beyond the expertise of your primary care doc. I would want to be sure their was some logic behind any more tests, that she is not just grasping at straws and wasting your time and money.

Can you get a non-NSAID pain reliever?
Sorry you are suffering so.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, seasonal? Back on prednisone, 40-30-25-20-15... Humira denied, started Remicade 4/12. 


kimor
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/18/2009 3:26 PM (GMT -6)   
I developed Remicade induced Lupus after being on Remicade for less than a year. My joint pain was unbelievable. Ediekristen - your symptoms sound very similar to mine. The Remicade helped my UC symptoms and I hated to go off it. My doctor says that the Lupus will go away after the Remicade leaves my system. I was put on prednisone and that made my pain tolerable instantly.

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 4/18/2009 5:53 PM (GMT -6)   
Well, the primary care doctor I see is an internal medicine doctor as opposed to a general family practitioner. I was hoping that would mean she might know more but it seems that might not be so. I think if she can't tell me anything Monday($60 in copays and who knows how much in tests later) then I will just go to my GI and see if he has any opinion. The last time I took prednisone I was on 45mg and it didn't help me at all, I think I've been on it so many times that not only did I become dependent on it but it just started to lose its effectiveness. So I avoid it like the plague.
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
3rd Remicade infusion 3/19/09


Lisa E.
Regular Member


Date Joined Jun 2008
Total Posts : 47
   Posted 4/18/2009 10:01 PM (GMT -6)   
I was told that ibuprofen can often aggravate symptoms, so be careful with that. I'm sorry to hear that you're feeling so lousy. This is such a horrible disease to live with.
41 - Female/Long Island, NY
Dx - 6/23/08 - Pancolitis
Asacol - 2 pills/3X per day
Asadopholous pearls - 1X per day
Culturelle - 1X per day
Fish Oils
Prednisone - 40mg/decreasing 5mg every 4 days.  Haven't started taking because of surgery concerns.
 
Added Bonus - found a mass on my left kidney during an abdominal CT.  Waiting on surgery to remove my kidney.


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 4/19/2009 2:33 AM (GMT -6)   
Hi Edie...tough to hear you're in such a horrific state...I can only imagine your agony.

I think your doc should also send you to a rheumatologist as well as an internist..unless the internist is a rheumie......it's way too complicated to guess if it's UC related or a separate entity or a complication from pred or whatever....

Ibuprophen is very hard on the kidneys...maybe limit its intake?

I sure hope you're able to get answers soon.

quincy
*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 4/19/2009 1:32 PM (GMT -6)   
My God I will pray you get the relief you need...hopefully it is just the flu on top of your UC flair...keep the faith : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 4/19/2009 1:34 PM (GMT -6)   
kimor said...
I developed Remicade induced Lupus after being on Remicade for less than a year. My joint pain was unbelievable. Ediekristen - your symptoms sound very similar to mine. The Remicade helped my UC symptoms and I hated to go off it. My doctor says that the Lupus will go away after the Remicade leaves my system. I was put on prednisone and that made my pain tolerable instantly.
Oh my, I hope you get over this very quickly...how coommon of a side effect is this?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3-4X per week
Curcummin and Probiotics/Rueteri.
Bowel Soother and IntestiNew, Fish Oil, Calcium/Mag/Zinc, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Could never tolerate artificial sweetners
I try to excersice/swim daily
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/19/2009 1:56 PM (GMT -6)   
     Sorry to hear you are suffering so.  Sounds like RA.  Remicade induced Lupus?  That's a new one in my book.  Furthermore, I thought once you had Lupus you had it for life.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


kimor
New Member


Date Joined Apr 2009
Total Posts : 8
   Posted 4/19/2009 5:49 PM (GMT -6)   
I live in Calgary, Alberta, a city of over 1 million people. My GI has personally seen 12 people with Remicade induced Lupus. The Rheumatoid Specialist that she referred me to has seen many of his arthritis patients with it. Both doctors told me that it has gone away within a few months in every patient that they have seen.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/19/2009 6:32 PM (GMT -6)   
I was under the impression that Remicade induced lupus is fairly common- I could be totally wrong though! It's just that I've heard of a fair amount of people who've developed it. That's yet another of my many Remicade worries. Lots of conditions can be drug induced, Christine- I had drug induced hepatitis while in the hospital. Once you stop the offending drug, the condition usually goes away. Oh yeah, I had drug induced diabetes too! But anyway, god ediekristen, that SUCKS! I hope for your sake it isn't the lupus- you'd have no choice but to go off Remicade if it was. Even an infection while on Remicade can be a nasty nasty thing! Please let us know what your GI says- you may want to give him/her a ring prior to seeing your primary care doc, just run it by him- he may want you to see him instead. Take care!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/19/2009 9:23 PM (GMT -6)   
Edie, I'm so sorry that you're feeling absolutely horrible. Make sure your blood tests include ANA and dsDNA--they test for lupus. And still go see a rheumy.
I've been having joint pain for the past couples months but my ANA and dsDNA came back normal. But my PCP is still suggesting that I go to a rheumy.
 
Keep us updated!
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 4/20/2009 8:37 PM (GMT -6)   
Thanks for all the responses and well wishes everyone.

Just wanted to update you all... I went back to my doc today.. Apparently the CT scan showed quite a bit of thickening of the wall of my sigmoid colon. Didn't appear to be any abscesses but she's feeling certain that the infection is in my colon and that is what is causing all of this. Naturally she didn't know what to do next, has me on Cipro & Flagyl, and said to call my GI asap. So I have an appointment with him on Friday morning to talk about what this might mean.

It's strange because I am not flaring, not in the typical sense anyway. I'm even having completely formed stools! Usually once a day, very little urgency, no blood that I can tell, occasional heartburn but that's it. So I'm guessing the thickening is scar tissue in which case if I'm not mistaken that's not really a good thing. Guess I'll find out the verdict on Friday or after what I'm sure will be an inevitable sigmoid/colonoscopy.
Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
3rd Remicade infusion 3/19/09


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 4/20/2009 10:54 PM (GMT -6)   
Hi...well, It's great your GP is so responsive, and definitely a good thing you're able to see the GI on Friday....interesting about the thickening of the Sigmoid wall....could it possibly be that you have CD and not UC?


If the GI doesn't think you need a sig-scope...maybe insist on one just so that he's not relying on the CT scan alone. I guess there could be various reasons for the sigmoid to have thickened wall...worth doing some research on my part out of interest. One thing that's possible is that stool will sit in the sigmoid until it's ready to "download" into the rectum....maybe that's part of the reason for the thickening?? especially if you might have any form of constipation.

Please keep us updated on how the appointment goes.

quincy
*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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