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Ides and Keah: I have some questions...

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Crohn's Disease
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Posted 11/14/2007 10:18 AM (GMT 0)
Hi..

I know the both of you have arthritis along with crohns and hoping you might be able to clear up a few things for me.

In the past year I have had bouts of what I am almost sure is enthesitis, and I have had lower back pain, and ankle pain on and off for years before I was diagnosed with what they believe to be crohns. In the past year my tailbone/gluteal cleft area has been giving me the worst pain, that almost goes away when I get up and move. My fingers, wrists, toes, top of the feet and shoulder are migratory and I have pain from one or more of these every day (migrates).

I keep reading about arthritis that goes with crohns and ankylosing spondylitis. I notice no difference in my crohns when my pain gets bad, but at the same time I have a mild case of crohns. I have only had one bad flare and that was when I was diagnosed.

I am seeing a rhuemy again at the end of this month. Anyhow I was just wondering if Ankylosing Spondylitis can cause ulcers in the colon. Since I don't have a definite diagnose and have such a mild case of what they think is crohns, it just left me wondering if AS could be causing my whole problem.

Any input would be appreciated...

PiaSava

 

Posted 11/14/2007 10:53 AM (GMT 0)
Hi Piasava,
I was diagnosed this year with osteoarthritis. I have pain in my wrists, ankels, sometimes in lower back
and knee's I am taking pain meds for this. I also have crohn's. If I were you I would recommened
seeing a Rheumy doctor.

TBW
Posted 11/15/2007 8:09 PM (GMT 0)
Just bumping...
Posted 11/16/2007 2:28 AM (GMT 0)
Here's another bump to help out.
Posted 11/16/2007 4:20 AM (GMT 0)
PiaSava -
You have asked the $64,000 question. Keah and I have talked at length about whether mild intestinal inflammation in a person with AS could look like Crohn's but be a manifestation of the AS. I'll tell you my story.

Bouts of intestinal problems for 20 years. Always told it was IBS. Also had bouts of odd joint issues - from tendinitis not due to overuse to bursitis not from overuse. Two bouts of iritis [heavily associated with AS]. Umpteen bouts of kidney stones [this associated with CD]. Finally started having odd joint issues, cysts in joints that had to be surgically removed, hips so inflamed I could not walk. Then came the duiarrhea from hell that caused me to seek medical attention. Scoped twice and was told by GI he could not understand my erosions in the terminal ileum - path report said highly suggestive of CD but GI not sure.

Sought out better GI who immediately diagnoses me with mild CD. Eight months later I have joint problems so bad I could not walk. Scheduled for hip replacement surgery. GI not convinced and based on my positive HLA B27 starts me on Remicade. Lo and behold, after the third infusion I put away the cane, walker, and wheelchair and canceled my surgery.

So I have AS but I also have pretty severe inflammatory erosive osteoarthritis. I have had multiple MRIs and my back is a mess. I am growing large bone spurs pretty much everywhere. I develop enthesitis in my shoulder, knee, thumb, and finger tendons. My Achilles used to get attacked frequently but they are so clacified now that they really aren't as bothersome anymore. I have had sacroiliitis which is a hallmark sign of AS but not necessary for a diagnosis according to some docs.

To top it all off and add confusion - my Crohn's has pretty much been in remission since I went on Remicade. Diagnosing enthesitis is pretty tough. It isn't always picked up on MRI. My rheumy uses ultrasound imaging to view my tendon insertion points.

I hope your rheumy takes your complaints seriously and helps get you some relief. Let me know what happens.
Posted 11/16/2007 12:37 PM (GMT 0)
Hi Ides!

Thank you so much for your reply.

I keep thinking that my crohn's (if thats what it is) has to be secondary to the joint pain. I can actually remember the first time I had pain in the sacro area. You see my mom was ill for years with her tailbone.. And I remember thinking that I hope it would let go quickly since I saw what bad pain my mom was in. That was in 1998. My mom passed away that year and I am not able to ask her questions about her tailbone, but she always thought that her pain was from being kicked in the spine as a young girl. She was growing spurs like you. I can't help but wonder if she actually had something more going on. She would alway complain about her stomach and I remember how she used to be constipated all the time. I have also read that it can affect your heart, and my mom had her surgery on the arterie leading to her heart and that is also something I read can be connected to AS. What I can't understand is that I am HLA-B27 neg.

My ankle started hurting me in 2000 along with lower back pain the was my only problem until 2004. I never talked to a doctor about it, just figured it was one of those minor pain things we all get. It never lasted a long time either. Then I was sick with elevated LFT's and everything that goes with that. Diarreah, nausea, fatigue and jaundice... The doctor said he had no idea what was causing it, but it disppeared after 2-3 weeks. I was back to feeling pretty good, exept for fatigue - until the summer of 2006 when I was hit with diarreah again. This time I had a colonscopy/gastroscopi and my biopsy came back inconclusive. Ulcers scattered like in Crohns, but no granulamas (sp?) and my colon was the only part of my intestine that was involved.

Fatiuge hit me bigtime after this. I was unable to do anything but sleep. I have also had periods where the fatigue was alot better, but then if I tried to do some housework or go for a walk, I would feel like I was hit my a truck. Actually I felt like I had run a marathon after dusting for an hour. That and the paralysing fatiuge put me out like a light. No way I could stay awake. I still have this problem and this and the joint pain is now my main problem.

I have pain thoughout my whole body. It does come and go, but this time I have had it for about a month non stop. I feel like I am starting to get a clearer picture of what is going on, but I can't understand that my stomach could have caused this. I never had any trouble with my bowels before 2006. Maybe it was there without me knowing, but I just feel like it is the other way around. Another reason why I can make no sence of the fact that I am HLA-B27 neg.

Ok.. this post turned into a long one, but I understand now that things aren't as black and white as I wish they were.. lol

Thank you very much for your feedback. You cleared up a bit of the mess I had going on in my head.

PiaSava
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