New symptoms after 20 years with UC.....

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mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/8/2008 3:42 PM (GMT -6)   
Hi all!  I almost forgot I had an account here, it's been a while since I've visited. 
 
I just have a few questions that I would like to ask you, the ones who go through this as well, before my follow up appointments on this Friday with my PCP, and my GI in July.
 
I have, for the last few years been experiencing several new symptoms that my PCP & GI say are a direct result of living with UC.  The symptoms include (and not always, mostly intermittent, and sometimes only with flares) severe lower back pain, eye irritation to the point where I have to use medicated eye drops to keep my eyes lubricated, sores on various parts of my body that don't seem to heal (example...I have sores on both of my upper arms and across my back that continuously scab over and then become inflammed, go to a "raw" sore and then scab over again, repeat.....this can last for MONTHS!) 
 
Anyway, I'm currently in another flare for the first time since February, 2007 (WOOHOO) but this one is really bad.  I'm back on 12 Asacol per day, Canasa 2x per day, and a new med Hyoscyamine 2x per day.  My flare started 2 weeks ago, and the "D" has finally begun to subside, but unfortunately the lower back pain has become more severe as the days go by.  The GI told me that the new med mentioned above should aleviate the back pain by a "trickle down affect", the med is used to dry up the fluid and acid that the body produces, which in turn should reduce the colon spasms, which he thinks is causing the low back pain and it should have been better by now.  But it's not, I actually think it's a little bit worse. :-( 
 
Anyway, I see my PCP first this time, and I was just wondering if any of you long time sufferers experience this type of back pain, and wether I should have him investigate furter than my UC for a possible cause?  I don't do strenuous work, I've not injured my back, and I just honestly began experiencing this severe pain with the onset of this latest flare.
 
Thanks in advance for any and all information, feedback, good vibes, anything you may have to offer.
 
Hugs,
Norma
 
 

lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 6/8/2008 4:02 PM (GMT -6)   
Hi i am new to U/C only just diagnosed ,ihave been getting lower back pain and my leg feel very heavy like you it is not all the time it seems to come in waves, it might even be diet related sorry i have no answers but am sure someone will this is a very good site
  
  Diagnosed 22.5.08 with Lft sided U/L
  Meds Predfoam 20mg 2x day
  Mesalazine 400mg 2x day


Farida38
New Member


Date Joined Jul 2005
Total Posts : 2
   Posted 6/8/2008 4:15 PM (GMT -6)   
Hi, i have a flare up now after 1 year & this time its worst than before. well, i do have serious back pain .. i am using Asacol ...

mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/8/2008 4:25 PM (GMT -6)   
Hi Lambkins & Farida38, thanks for sharing your information, and I am so sorry that you are both going through this as well.

JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 6/8/2008 4:32 PM (GMT -6)   
Have you been tested for other immune related conditions? There are many that share several symptoms with UC (things like lower back pain and eye issues are common in ankylosing spondylitis).
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 6 a day
Also taking VSL3 X1 a day


mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/8/2008 4:35 PM (GMT -6)   
The only other disease I've been tested for is Lupus, which I don't have. I'll look into Ankylosing spondylitis. Thank you!

mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/8/2008 5:09 PM (GMT -6)   
http://www.medicinenet.com/ankylosing_spondylitis/article.htm

Wow, I would have never known! Thank YOU!

I had NO idea that this disease was realated to such illnessnes. Thank you for the information.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/8/2008 6:30 PM (GMT -6)   
I'm in the process of trying to find out the cause of my back pain as well. I have always had back pain but the longer I have had Uc the worse it is becoming. I have been checked for everything under the sun including AS. All of my tests have back negative and some of the members on the arthritis forum has told me that one can have this type of arthritis and it never show up on tests. But right now I'm in the process of seeing a neurologist. So even though this may not be a direct Uc symptom, we can definately be more prone to these types of things.
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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
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jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/8/2008 6:41 PM (GMT -6)   
I have severe lower back pain right in the middle of my back when I flare. I always say it feels like a horse has his hoof on my lower back just above the split. I used to have a milder version of the same thing when I had severe menstrual cramps. I've always thought that particular pain stems from swollen abdominal organs putting tension on the membrane that holds everything in your abdomen in place, causing it to hurt.

I also have pain in the sacro-iliac joint at times; this started approximately 12 years before the UC appeared, but I believe they're related.
 
UC and other auto-immune diseases can be accompanied by various extra-intestinal symptoms, including not only joint pain but uveitis, or inflammation of the eyes. Sounds like that may be what you have. It can appear at any time in the course of the UC. We recently had a newly diagnosed member who started having eye problems and was diagnosed with uveitis. It's good that you're being treated, because it can damage the eye if not cared for properly.

Your skin condition sounds like it could be pyoderma gangrenosum, a skin disease sometimes see with UC and other autoimmune disorders. I hope the treatment you're getting for it is controlling any pain and helping to heal the lesions.

I'm really sorry you're getting all of these UC "extra's". Hoping you feel better soon


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Post Edited (Judilyn) : 6/8/2008 6:47:42 PM (GMT-6)


mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/8/2008 7:00 PM (GMT -6)   
Oh WOW, {{{{{{{Judilyn}}}}}}}} Thank you , thank you, thank you! for all of your wonderful information! At least now I know I'm not alone with these symptoms, and although they may be related to my UC, I'm going to ask for proof.

Thank you again, and God Bless.

Hugs,
Norma

Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 6/8/2008 7:17 PM (GMT -6)   
Nah, you are certainly not alone!! I have had lower back pain since my flare began back in March. Usually accompanied by leg pains and joint pains <ankles, wrists, fingers even>. My family Dr says it is certainly related to UC but I see my GI tomorrow, finally !! Good luck with everything !!!
Jenn 26/female
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG as needed <usually one pill a day> until I see my GI
Daily Vitamin for Women and Folic Acid
Currently in a flare since March 6 !!!!!!!!!!!!!!!!!!!!!!!


mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/8/2008 7:17 PM (GMT -6)   
{{{{{{{Red}}}}}}}}}} Thanks for the great info as well!

kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/8/2008 7:19 PM (GMT -6)   

Here are iinteresting links on ankylosing spondylitis.

http://www.digitalnaturopath.com/cond/C553113.html

http://www.alive.com/2633a9a2.php

There is a "diet" that is mentioned in the articles. Interesting that it mentions eliminating all grains and sugar (fungus feeders)...seems to be a common strategy in getting rid of ill-health symptoms, as I have found the same to be the key for me in getting rid of my UC symptoms.

 

 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/8/2008 9:06 PM (GMT -6)   
Norma, I get back pain occasionally, it goes out on me for like a week sometimes. I don't thin it's related in my case. Anyhow, the sores that don't heal and scab over and keep coming back.....that sounds like you should have a doctor check it. I had a sore like that on my chin and it was a year before I had it checked....it was skin cancer. I don't want to scare you, just want you to have it checked.....better safe than sorry. Take Care, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis, possible dysplasia
Currently: symptoms have subsided, awaiting biopsy results for dysplasia
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (during flares) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel,
High fiber diet
"I thank God that  I found this website!"
 


mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/14/2008 4:36 PM (GMT -6)   
Hi Bellski and thank you so much for the information.  I went for my appointment yesterday, and the first thing I asked my PCP about were the open sores on my arms, chest and back.  I told him how long they have been there and "rhythm" of open/bloody, scab, healing, back to open.  He mentioned that I have actually mentioned these sores on a few previous visits over the years (I honestly don't remember them happening for this long) and that he'll send me to a dermatologist if I want, but he sees no sign of skin cancer and he again reminded me of the "extra systemic" tendencies of UC.  sigh
 
Then I was sent for back x-rays.  His initial thoughts were a type of spoldylosis, and quite possibly Ankylosing Spondylitis.  With the history of back pain in various regions of my back over the years, along with the "moving" pain that he documented over the years that tend to affect only one joint at a time, but suddenly moves on to another part of my body (like I'll wake up one day with swelling and severe pain in my left knee, 2-3 days later that's gone but then my right elbow will have the same symptoms, 2-3 days later that's gone and then it will be in my left big toe ect, ect, ect) along with a ton of bloodwork, hopefully I'll have some real answers by Tuesday.
 
Thank you all again for your helpful information, and for the kind thoughts.  I will keep you updated.
 
~hugs~
Norma

Old Hat
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Date Joined Feb 2007
Total Posts : 5177
   Posted 6/14/2008 4:58 PM (GMT -6)   
At 2 times in my history with UC I've been treated for a few months with steroid meds, which brought the colon inflammation under control, then the joint pain subsided. Mine was worst in sacrum on the 1st severe flare, then in the left hip with 2nd severe flare. So the joint troubles can indeed move around, or come and go. You probably need adjustment to meds & careful monitoring of your UC to bring the extra-systemic symptoms in eyes, joints, & skin under control, too. Have a look at Salix Pharmaceuticals Website Newsletters on IBD (Archive) as your time permits because the doctors writing there discuss these joint problems, etc., as well as other important aspects of IBD treatment. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/14/2008 6:14 PM (GMT -6)   
Thanks for sharing your information {{{{{Oldhat}}}}}, and will look into that medication.

I have to admit, I'm just a little bit scared at this point. I've gone the last 20 years with "dealing" with the symptoms, mainly because I can certainly live my full life around them. I am married to the greatest man on the face of this planet for 17 1/2 years, and have a 16 year old daughter who has an emotional disability, and I pretty much live my life for them, and am HAPPY with my life. Here lately, these symptoms have slowed me down, and it makes not quite as happy any more. :-( I just hope and pray that this back pain isn't that condition, and that I can get it under control like I have done with my UC, because it's making me miserable to tell the honest truth.

For goodness sakes, I'm only 36 years old, and yesterday my PCP told to I should feel lucky that with having this (the UC) for 20 years now, I should be pretty thankful that extra-systemic conditions haven't been "as bad as they could have been before now". I guess he's right, but still, this just sucks.

Sorry for the rant, I just don't have anywhere else to let it out right now.

~hugs~
norma

mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/14/2008 6:16 PM (GMT -6)   
sorry for the typos, it's hard to express my feelings sometimes, through tears.

mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/14/2008 7:14 PM (GMT -6)   
Sorry I got all emotional and all, that's not at all like me. No one needs to answer. I just had a weak moment I guess.

FreeSpirit1
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/14/2008 10:29 PM (GMT -6)   
 Hi, I am sorry to hear you are feeling bad and hope things will get better soon. I read you post and I have the same back pains every time I have a flare up. They are so horrible that my back and stomach pains put me in the bed at times...thank god for my heating pad. I currently spent 23 days in the hospital for a flare up and I am still on Pred after almost 5 months..the longest I ever been on them.  The doc did finally change me off 5-SAS drugs to Imuran..I am currently taking 75 mg a day, plus cort enemas. I am still bleeding but it is better. I still have the back pain but it is letting up since the flare up is gettting a little better. I do take hydromorphine for my pain when it gets too bad, I really don't like the pain meds but my doc lets me have them in case of the tough times. You may want to see if they can give you something if the pain gets unbearable. I only take it when it is unbearable but it helps me thru the tough times. I hope you feel better soon and I do feel your pain.
 
 

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 6/15/2008 3:48 PM (GMT -6)   
mrsnmre-- I think what you're feeling emotionally about the joint pain is what we all go thru when it's bedeviling us. We all have lots to do whether holding jobs, taking care of family, etc.-- so anything that slows us down is bound to be frustrating, even scary. Make sure you're getting recommended vitamins/minerals daily; that can help improve your coping ability, too. I found that careless blood test draws where some blood was allowed to leak into tissue surrounding the punctured vein gave me arthritic-like pain in the elbow for several weeks afterward-- now I'm very cautious about these blood draws & insist on keeping my arm extended while applying pressure for several minutes once the needle is withdrawn. That has solved my elbow joint pain! Have also benefitted from use of topicals like BenGay arthritis pain formula on back, shoulder, or hip areas as needed. I agree with you that one doesn't expect to be slowed by joint symptoms at age 36-- keep telling yourself that you're not an exception, though, that other UCers fight this, too, & you intend to get it under control. Try to stay positive. / Old Hat

mrsnmre
New Member


Date Joined May 2007
Total Posts : 17
   Posted 6/15/2008 5:41 PM (GMT -6)   
keep telling yourself that you're not an exception, though, that other UCers fight this, too, & you intend to get it under control.
 
Believe it or not, I think that's exactly what I needed to hear Old Hat, and I sincerely appreciate it.  I also appreciate the info about the blood draws, I will definately keep that in mind in the future.
 
I will update when my results come back.
 
~hugs~
Norma
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