My story of enteropathic arthritis

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costas
New Member


Date Joined Nov 2006
Total Posts : 2
   Posted 11/8/2006 8:00 AM (GMT -7)   
Hello everyone, my name is Costas and I have entered this forum because my sister is suffering form Crohn's disease (CD) which has evolved to enteropathic arthritis. Reading throughout this forum I haven't actually met my sister's symtpoms. Elena (my sister) suffered from colitis and entered the hospital in England back in 1993 where she was diagnosed with the CD and was treated with cortizone for about 25 days (whre she lost 20 kilos). She was problem free for about 5-6 years where all of a sudden she got swallen knees, very swallen knees where she could not walk. This happened again after 3 months and then it kept happenning more often. The problem has gotten worse as all of her joints are aching and Elena has worsen a lot and the result is that now she is not getting swallen knees anymore but she has serious problems moving around and she cannot lift weight because her joints ache so much. She refused to take any medicine for a long time (remicade) but she took salopyrinefor a period of 6 months time but the results were not great. Elena wants to avoid medicine as she is afraid of side effects (she is 34 years old) and she has tried hopeopathy with no lasting result. I 've read what you wrote about remicade and I am not sure if I should insist on taking it.But she does get worse.
Sorry for being so long, just wanted to enter your forum

Regards from Greece
Costas :-)

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 11/8/2006 9:14 AM (GMT -7)   
While arthritis associated with IBD is often mild and migratory without swelling of joints for some people it may pass a severe course with severe inflamation. I would advice you to make more examinations on the arthritis issue to rule out rheumatoid arthritis. If the diagnosis of rheumatoid arthiritis is not appropriate so you do have to manage with the GI inflamation first. The arthritis should subside on its own after that. salopyrinefor suppose is the local name of the generic sulfasalazine is probably one of the best, cheap and with fewer side effects medicines of the disease modifying group. If it doesent work for you together with her refusal to take long time medicines I would try the only left possibility for treatment - the natural and herbal way.


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/8/2006 4:29 PM (GMT -7)   
Costas,
I have Crohn's and spondyloarthropathy which is like enteropathic arthritis except my spine is involved also. Does your sister have pain in her back also? Has she been tested for HLA-B27? People that are HLA=B27 positive and have Crohn's tend to have a more severe form of enteropathic arthritis.

If her Crohn's is not under control her arthritis will be worse. So it is important that the Crohn's be treated. Does she take Crohn's medications? Because a person with Crohn's should not take NSAIDs, the medications available are somewhat limited to help the arthritis. I could not tolerate sulfasalazine so began Imuran and Remicade for the arthritis. I was to the point I needed two canes to walk because of the joint problems. The Remicade and Imuran combo have really helped me regain my mobility.

A couple suggestions: There is a Crohn's forum here at Healing Well. Many of us have arthritis problems like your sister. If you come there and post your sister's story, others will have suggestions for you. Here is a link:
http://www.healingwell.com/community/default.aspx?f=17&r=x

There is excellent information about enteropathic arthritis at the Spondylitis Association of America. At the below link, go to the section on top entitled "about Spondylitis".
http://www.spondylitis.org/main.aspx


CD, Ankylosing Spondylitis, peripheral neuropathy
Please help support this forum. http://www.healingwell.com/donate/ 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 11/9/2006 4:41 AM (GMT -7)   
greetings costas and welcome.

i have colitis or what i refer to as a history of colitis. i was first diagnosed when i was in my early twenties with severe rectal bleeding and lost 15 pounds. meds which i cant remember from then- sorry over 20 years ago- and diet changes all helped. it was dorment for many years and and the fall before my RA flare and diagnosis the inflammation of my colon reappeared with much blood loss and inability to keep anyfood in me. it was very painful and draining and at that time i thought it was stress related? but my rhuemmy says inflammation of the bowel or colitis is all related. i am fortunate i do not have any further active problems, well actually i guess i did last night, but not severe with bleeding.

there are homepathic trials for inflammatory diseases, i just dont use or know of any that work.
perhaps someone will come along soon and share some. yalinda

PainNdaGut
Regular Member


Date Joined Sep 2006
Total Posts : 43
   Posted 11/9/2006 12:10 PM (GMT -7)   
hello costas, I am fairly new to these boards, but i saw your post.I have had Crohns disease for 13 yrs and the last year had very painful joints,mostly in my back & SI joints. I too was recently diagnosed w/enteropathic arthritis. I think its more on the ankylosing spondylitis, because most pain is in my SI joints.I couldn't take Imuran, but am now on Methetrexate. have only been on it for a month, but havent felt any better as yet. I havent had much of a problem w/my cd the last year just my back. I am going to give this a try before I jump to the remicaid. I am hoping the methetrexate will do the trick.
 


costas
New Member


Date Joined Nov 2006
Total Posts : 2
   Posted 11/13/2006 12:46 PM (GMT -7)   
Thank you all so much for your replies, it is giving me courage on my research to help Elena. Marius123 rheumatoid artritis has been ruled out from several tests and Elena has tried for the last 4 years a lot of alternative therapies (accupuncture, extended homeopathy treatment, holistic therapy and very strict diets) but the results are not what she would exoect. In fact I can't say that Elena has gotten any better; I have to admit that she is much worse now: very stiff and aching constantly. As I said before no more swallen knees but constant difficulty to walk and hold weight.
Ides, Elena has been tested for HLA-B27 and found negative. And the last colonoscopy examination (2 years ago) showed very little (if any) of Crohn's signs left (she will do the colonoscopy test pretty soon again). Yallinda, Elena had colitis for 2 years before she developed the Crohn's but she never had any bleeding problems.
The last 3 months Elena's situation has deteriorated and I feel urged to do something to help her. I've heard that swimming can help a bit.But most of all I would like to know if any medicine will make a progress without having serious side effects.
 
Again thanks to all yeah Costas
 

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 11/13/2006 3:17 PM (GMT -7)   
Hello costas
I had gastro-intestinal problems. I'm not diagnosed with Crohn disease but I had symptoms very similar to crohn (excluding diarrhea and bleeding). There was times before, when I was completely sure that I have Crohn disease, but godness it went away (a least for now).. who knows?? ;).
I can tell you what I have taken:
local name Gericaps (viatmin A+ vitamin E), duspatalin, Aloe Vera ESI, ADLiquid Immune Support, activia yogurt twice a day, Enterosan (local name of active probiotic), Colon C (another probiotic taken as a food supplement) and a drank herbal tea litter a day, but I forgot the exact tea substance. I shall call my herbalist who gave it to me and will post a message again.
There is a warning massage on the Aloe Vera ESI sticker says that it's not recommended for active crohn disease because it acts like a laxative, but I didn't have diarrhea and decided to try it. I can tell you that it helped me mostly when I began to drink it I felt better - full with energy and low-grade fevers calmed down. It's a miracle herb for me.... realy.. But i don't know if it works the same for all ;(
Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 11/14/2006 3:54 PM (GMT -7)   
I have what the doctors think is Crohn's or UC, and joint pain was my first symptom. I had mild migrating joint pains for almost 4 years before being "almost" diagnosed. Like Marius I am very fatigue most of the time. My pain has been more aggressive since my bowel problems started. And I have had 1 week of the 4 months since my "diagnose" where I was feeling normal. During that 1 great week, I had a normal wbc (thats been elevated since my diagnose), my joint pains were gone with the wind, and my bm's almost normal.

Joint pain came back after about a week and so did all my other symptoms. I have a whole bunch of them, and I don't know if they are all crohn's related or not, but I do know that the joint pain and the bowels are in connection with each other.
Hospitalized with Infectious Colitis.
Colonscopy showed ulcers.Diagnose changed to either UC or Crohn's
Whatever it is, I was told its mild...
Medication Asacol 1x3 
Never had a good follow up - no small bowel test at all.
Gastroscopy was normal, but Still have a burning feeling in my stomach.
Looking for a doctor in Oslo who knows what he's doing atm.
 


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 11/14/2006 5:40 PM (GMT -7)   
PiaSava said...
I have what the doctors think is Crohn's or UC, and joint pain was my first symptom. I had mild migrating joint pains for almost 4 years before being "almost" diagnosed. Like Marius I am very fatigue most of the time. My pain has been more aggressive since my bowel problems started. And I have had 1 week of the 4 months since my "diagnose" where I was feeling normal. During that 1 great week, I had a normal wbc (thats been elevated since my diagnose), my joint pains were gone with the wind, and my bm's almost normal.

Joint pain came back after about a week and so did all my other symptoms. I have a whole bunch of them, and I don't know if they are all crohn's related or not, but I do know that the joint pain and the bowels are in connection with each other.

Dear PiaSalva,
 
If some1 has told me that I have crohn's disease, or psoriatic arthritis or if you want even rheumatoid arthritis or lupus it will be a new starting point (or maybe ending point..  mad   ) of my life, because I will begin to think somehow  different on my disease.. may be shall learn to accept it.
But my situation is now astraddling. If it was realy reiter's syndrome the statistics shows a full remission should be achieved for year or two - MAX. I had GI problems started 6 months ago because of my foolish action drinking much scalded garlic every day. Then  it made me think I have crohn (you know ...the extra-intestinal symptoms tips the balance).  In spite of this the GI docs was still telling me that I don't have it. I insisted to them that I have it..just imagine this matter;))lol However, it's in complete remission now (at least I don't have GI symptoms). I still keep the diet regime and have smth in mind, that I still may have the crohn (but in remission), or the other possibility is just IBS because of the disbacteriosis caused by the garlic. However, all my symptoms are a big mistery. Had uro-genital infection (that's the main reason I'm still diagnosed with 'only' reactive arthritis). Also my blood works has always been nagative. Very low CRP, low WBC, ESR, totaly negative ANA and RF. In combination of all these 'blood negatives' I continue having low-grade fevers, sometimes eyes probs (mainly conjuctivitis). When I had the GI problems I had also uveitis. Uveitis (blurry vision) were related to the GI probs, now I know that for sure, because I don't have it right now. So now, lets conclude: sleep perfect, mornings are usually best time of the day for me, rising up fever at the afternoon up to 37.4C (99.32F ..lol) accompanied with conjuctivitis and mild at all arthritic pain. Also I have cold hands when I rise up the fever...usually only at the afternoons. I know my full HLA tissue antigens formula learnt by heart. May be I'm the only person in diameter of many kilometers who knows it's full HLA...lol;).
 
I tried sulfasalazine long ago, It s...ed for me. No need of NSAIDs for the joints... as long as they're mild in pain. My new approach was exactly the mentioned in my previous post ( with the herbs and  immune support). I finished my bottle of Aloe Vera 2 weeks ago and.. do you beleive me??? I think the fever and conjuctivitis are now comming back ;(( Awwww crap! It's chronic, it's punishment. I was just on my way to find a new job... why why why....lol;))) What the hell's wrong with me? I know there are much erudite doctors. I know many can even take me as a experimentall mouse, evem can write a science work if he realy find what bothers my immune system.  B ut I can't find that doc. All of them just throws their hands in surprise and telling me it will probably go away, if not develop into a more sever disease... Why it is just a period of waiting. Is the medicine realy so helplessness about that rhaumatic diseases...indeed there's rheumatology subject there. Why they just wait for development, when there is may be possibility to prevent this 'development'... I can't trust to docs. My rheumy told me to take methotrexate for 6 mnths and see what will happen. How can I agree with her taking methotrexate when I felt worse taking sulfa and I realize NOW that I feel better when I take immune-stimulatators... how? how to trust the s....d docs... They are s...d!!!

However don't take me on serious. It was just another emotional outpouring. Keep going, dreaming on.. and so on.

What was the 'infectious' organism  of your primary diagnosis - 'Infectious colitis' ?


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 11/14/2006 6:04:59 PM GMT


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 1/1/2007 12:47 PM (GMT -7)   
Marius.. I am so sorry that I never got back to you on this post. I hope you read it now tho.

You replied to my post about the chlamydia the other day. Until now I didn't know what the incectious orgasim was. Now I belive it is the chlamydia. I am hoping that the medicine I am taking for the chlamydia will clear up at least some of my problems. In my heart I think all my symptoms are related to it. I have had it in me for 5 years at least.

I have alot of symptoms like you and I think I have reactive arthritis as well. Mine started shortly after I was infected with the chlamydia all those years ago. I have had back pain and other small pains here and there that I now know were because of the chlamydia as well. The arthritis has has come and gone, but has been worse after the bowel problems started in June this year. I only had 1 week of bad diarreah and then I just had abnormal bowel movements after that. (2-3 times a day - either softer or sometimes harder then usual)

Other then that I have been suffering from other wierd symptoms as (don't laugh) "sweaty knees" and cold feet. I had two ice cubes as feet this summer when it was almost 40 celcius outside. I have dry, burning eyes. I also have a funny sensation in my throat. It feels like something is scraping away at my windpipe when I breath. The doctors just give me a funny look when I try to explain. And I know all about them waiting to see if you get better or worse. That irritates me so! THAT I can do on my OWN!

My worst symptom of all tho is the fatigue. I have been out of work since this summer because of it. I have had it a long time, but before my bowels started up this summer I would usually get it in the evening after eating. Now I think the chlamydia has caused perihepa***, I read that you can get that from infections in the bladder or cervix.

I have started Doxylin, and I do feel a bit better after 5 days now, but I think I need more then a week worth of penicillin. I am going to discuss it with my doctor.

Oh well.. I am so sorry I didnt get back to you on this post earlier.

I would love to hear more about your story. I will check for any posts by you the next time I log in.
Hospitalized with Infectious Colitis.
Colonscopy showed ulcers.Diagnose changed to either UC or Crohn's
Whatever it is, I was told its mild...
Medication Asacol 1x3 
Never had a good follow up - no small bowel test at all.
Gastroscopy was normal, but Still have a burning feeling in my stomach.
Looking for a doctor in Oslo who knows what he's doing atm.
 


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 1/3/2007 12:50 PM (GMT -7)   

hi Pia

 

i have something very important to ask u please send me an email watch on my profile please replay me as is possible

PiaSava said...
Marius.. I am so sorry that I never got back to you on this post. I hope you read it now tho.

You replied to my post about the chlamydia the other day. Until now I didn't know what the incectious orgasim was. Now I belive it is the chlamydia. I am hoping that the medicine I am taking for the chlamydia will clear up at least some of my problems. In my heart I think all my symptoms are related to it. I have had it in me for 5 years at least.

I have alot of symptoms like you and I think I have reactive arthritis as well. Mine started shortly after I was infected with the chlamydia all those years ago. I have had back pain and other small pains here and there that I now know were because of the chlamydia as well. The arthritis has has come and gone, but has been worse after the bowel problems started in June this year. I only had 1 week of bad diarreah and then I just had abnormal bowel movements after that. (2-3 times a day - either softer or sometimes harder then usual)

Other then that I have been suffering from other wierd symptoms as (don't laugh) "sweaty knees" and cold feet. I had two ice cubes as feet this summer when it was almost 40 celcius outside. I have dry, burning eyes. I also have a funny sensation in my throat. It feels like something is scraping away at my windpipe when I breath. The doctors just give me a funny look when I try to explain. And I know all about them waiting to see if you get better or worse. That irritates me so! THAT I can do on my OWN!

My worst symptom of all tho is the fatigue. I have been out of work since this summer because of it. I have had it a long time, but before my bowels started up this summer I would usually get it in the evening after eating. Now I think the chlamydia has caused perihepa***, I read that you can get that from infections in the bladder or cervix.

I have started Doxylin, and I do feel a bit better after 5 days now, but I think I need more then a week worth of penicillin. I am going to discuss it with my doctor.

Oh well.. I am so sorry I didnt get back to you on this post earlier.

I would love to hear more about your story. I will check for any posts by you the next time I log in.


PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 1/6/2007 4:16 PM (GMT -7)   
Done, Iris..
Hospitalized with Infectious Colitis.
Colonscopy showed ulcers.Diagnose changed to either UC or Crohn's
Whatever it is, I was told its mild...
Medication Asacol 1x3 
Never had a good follow up - no small bowel test at all.
Gastroscopy was normal, but Still have a burning feeling in my stomach.
Looking for a doctor in Oslo who knows what he's doing atm.
 


RZ
New Member


Date Joined Jan 2007
Total Posts : 1
   Posted 1/20/2007 2:41 PM (GMT -7)   
Marius123 said...
Hello costasI had gastro-intestinal problems. I'm not diagnosed with Crohn disease but I had symptoms very similar to crohn (excluding diarrhea and bleeding). There was times before, when I was completely sure that I have Crohn disease, but godness it went away (a least for now).. who knows?? ;).


Hello Marius,
I'm replaying to you because when I was reading your post, it was as if it was written by me, same exact (mild) symptoms (intestine, eyes, back, kidney, knee & maybe hart) & sequence , however I didn't have low grade fever but the first month or two I was suffering from a feeling of hot upper head after 3 hours from eating that no doctor was able to explain, I took 3 antibiotics courses each 20 days that I recover fully by the end of the course then relapse & start all over again, unfortunately I developed food sensitivity that limited my food intake greatly

I found Specific Carbohydrate Diet to be helpful (avoid trigger)
Also I use Boswellia Extract that I think is helping (controls immune system as effective as medications) http://www.fourfoldhealing.com/Boswellia.htm

now, assuming it is any of these overlapping conditions (Crohn's, Reactive arthritis or Ankylosing Spondylitis) all of it are Autoimmune diseases thus I didn't try any immune system stimulants (Yet)

I would like to know your progress with the immune enhancement path - hopefully to the better
I also research allot of new treatments in this direction like Low Dose Naltrexone http://www.lowdosenaltrexone.org/
or Marshall Protocol http://www.marshallprotocol.com
hopefully someone can confirm it's benefits for our condition.

Thanks
Raoul

Post Edited (RZ) : 1/20/2007 2:52:39 PM (GMT-7)


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 1/21/2007 5:27 PM (GMT -7)   
RZ said...


Hello Marius,
I'm replaying to you because when I was reading your post, it was as if it was written by me, same exact (mild) symptoms (intestine, eyes, back, kidney, knee & maybe hart) & sequence , however I didn't have low grade fever but the first month or two I was suffering from a feeling of hot upper head after 3 hours from eating that no doctor was able to explain, I took 3 antibiotics courses each 20 days that I recover fully by the end of the course then relapse & start all over again, unfortunately I developed food sensitivity that limited my food intake greatly

I found Specific Carbohydrate Diet to be helpful (avoid trigger)
Also I use Boswellia Extract that I think is helping (controls immune system as effective as medications) http://www.fourfoldhealing.com/Boswellia.htm

now, assuming it is any of these overlapping conditions (Crohn's, Reactive arthritis or Ankylosing Spondylitis) all of it are Autoimmune diseases thus I didn't try any immune system stimulants (Yet)

I would like to know your progress with the immune enhancement path - hopefully to the better
I also research allot of new treatments in this direction like Low Dose Naltrexone http://www.lowdosenaltrexone.org/
or Marshall Protocol http://www.marshallprotocol.com
hopefully someone can confirm it's benefits for our condition.

Thanks
Raoul
Wow Raoul,
 
It seems like we do really share quite same path. Especially reading this about tha Natrexone yeah I've been reading it too.  Yes it's alternative approach. I don't have GI issues now..... godness, they realy passed away (at least for now), but when I had them I payed much attention to the LDN. Well I'm doing great 4 now. Mild discomfort in the right knee, dunno if it is because of current AI process or just the knee is maybe a bit damaged, however take glucosamine for that, hope it will fix it.
 
I take only natural products, aloe vera, prevoiusly have taken herbs for the IS support... however - all natural, never used other medications except Vitamins. Specially for the aloe vera extract they say that it increases the cellular activity or smth like that. The wonder is that it is written on the label that it is not recommended for people with IBD, but it worked fine for me ( do I have or don't have IBD dunno so far).  I also have taken probiotics and an yogurt a day. The last verison of the GI doc was that I had intestinal flora disbalance because of the garlic, but I don't fully trust doctors. Always keep in mind that I may have IBD in remission.
 
But beware with those grondmother's prescriptions because a same grondmother's prescription with too much scalded garlic brought me the GI problems during the summer....so beware, if you try something put yr self on a trial, with a low dose first, to see how it acts, then increase.... and...
ya know... just carefull, moreover yo know everything works different on different people.

Mhm... how did the things start for you? If you want write yr story in new topic because this topic is for Costas answers, not for ours conversation (i think).


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form occasional conjuctivitis outbreaks, mild arthritis, also showing some short lived mild aches all over the body

Post Edited (Marius123) : 1/21/2007 5:40:27 PM (GMT-7)

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