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Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 5/6/2010 2:16 PM (GMT -7)   
Hey all, I came here after reading Paul's note on the old Google newsgroup.  My CD is pretty mild, usually I feel pretty embarrassed to bring my problems to a group where so many are much more seriously affected.
Anyway, I had a visit with my rheumatologist yesterday.  My biggest CD complaint for the last 5 years has been the joint pain.  I'm 48 and perimenopausal, and every time my estrogen crashes my wrist hurts, or my pinky swells - last month my knee started screaming while I was at the stove cooking pasta.
My GI has kept me off the immune modulators - I'm treating my CD with pentasa (2g/day) and mesalimine enemas.  I take vitamin D (1000/day), and folic acid, too.  Last year I added entocort to try to deal with the joint pain, but it was too expensive (although it did relieve my symptoms pretty effectively).  So 6 months ago or so my GI took me off entocort and I started using sulfasalazine.  I'm only taking 1500 mg/day.
It was working pretty well until early April when my knee flared up.  I can't take NSAIDs for any of this joint stuff, as you guys well know, so I'm left with limping around.
So I went to see my rheumatologist and he finally connected all the dots for me and pretty much concluded that all this joint pain is ankylosing spondilytis.  That diagnosis came about after I casually mentioned a chronic hamstring injury and the associated MRI that showed degenerative arthritis in my SI joint.  And he agreed that estrogen cycles coincide with pain for many of his patients, but also noted that supplemental estrogen is not a cure for anything and has its own health risks.  So I'll not pursue any of that, which my OB/gyn will be glad to hear.
So that's me.  I'm ok with the AS diagnosis - I can stop blaming myself for the hamstring tear and really retire all my hopes of returning to running.  The arthritis in my SI is not going to get better.  The rheumatologist recommended I visit with an occupational therapist to get some ideas about posture and ergonomics, so that's my next stop.  I do walk for fitness, and I have a yoga practice that is gentle and helpful, so I'm going to focus on making that my permanent exercise plan.  And I'm pretty sure my rheumatologist will recommend upping the sulfasalazine dose.
Glad to be here.

Post Edited (kazbern) : 5/6/2010 3:19:00 PM (GMT-6)

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 5/6/2010 2:22 PM (GMT -7)   
Hi n welcome to the best forums out there imho
the ppl here are truly empathetic n will really give you some grat input
keep posting n know we are truly here to give support n help where we can
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

DONATE TO www.Healing

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 5/6/2010 4:22 PM (GMT -7)   
Hello Kazbern...please don't feel that your issues are not serious enough, cuz it sounds as if they are...they are affecting your life and what you love to do...that is no easy thing to deal with...for anybody...pain is pain is pain...and well, it bite donkey (well you add in the latter), to tell you the truth...

So please, come here and ask questions, scream, cry, vent, or whatever you's normal...and it's also normal to find a reason when things start spinning out of control...I still blame myself when I can't do stuff...I think it gives me a feeling of control over something that I have no control over...and at times, I don't think my brain wants to give up's easier to blame... sad

Take care...
"The earth laughs in flowers"

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/7/2010 6:42 AM (GMT -7)   
We have many members here also suffering with AS. I myself am thinking it might be time to head back to my Rheumy as my spine has been killing me, and my SI likes to act up when the mood strikes. Oh the joys of Crohns, huh? Oh, and welcome to the forum. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Feb 2010
Total Posts : 925
   Posted 5/7/2010 11:50 AM (GMT -7)   
Nice to meet you!  The Arthritis problem worries me as well
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Lialda 2X/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Change in meds is forthcoming............

Veteran Member

Date Joined Jan 2010
Total Posts : 3060
   Posted 5/7/2010 12:10 PM (GMT -7)   
Welcome. Arthritis is a big problem for me too when I am flaring. Some of us have found significant relief for arthritis with fish oil, and fish oil is also helpful with IBD in general as a natural anti-inflammatory.
DX ulcerative colitis Feb08, possible Crohn's colitis DX March 2010.
58 y/o straight male, ('BabeintheWoods' was meant to convey innocence, not female).
No Meds, allergic to Mesalamine. I find Psyllium seeds especially helpful.

Boswellia, E. Coli Nissle (Mutaflor), turmeric, fish oil, Saccharomyces boulardii, Jarrodophilus, multiple vitamin, extra D3, C, high gamma E, magnesium, Avoca Asu, slippery elm, phosphatityl choline, and glutamine. Sometimes VSL3. Diet includes copious amounts of fruit and vegetables, no soda, tea instead of coffee, very few processed foods, no carrageenan.

“Nature created all of the locks, therefore Nature has all of the keys”

Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 5/8/2010 9:19 AM (GMT -7)   
Thanks all - I used to take omega-3 oil - not fish but....ack, I'm having a brain freeze and can't remember the type of seed oil it was. I do need to put that back in the plan. How about chondroitin/glucosamine?

Regular Member

Date Joined Mar 2010
Total Posts : 303
   Posted 5/8/2010 5:29 PM (GMT -7)   
Welcome to the forum. I also have mild crohns and sometimes felt bad posting my issues when others seem to have to deal with so much more. But everyone on this board has been so supportive and understanding and never once was I told my issues were petty or insignificent. I am actually doing much better as of right now. I am on entocort and lialda plus various muscle relaxers throught the day so I don't post too much. However, I like to reach out to people whenever I can. I even apologizd to my good friend at work for whining so much and she told me there is no such thing as insignificant pain. And to vent all I needed to. So go ahead and vent if you need to!! It does a body good.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)

Veteran Member

Date Joined Dec 2009
Total Posts : 681
   Posted 5/8/2010 11:49 PM (GMT -7)   
 The biological drug Remicade that I'm on for crohns also is avaliable in BC Canada for ankylosing spondilytis. I have crohn's arthritis which is pretty much joint/bone pain without any swelling. The remicade works quite well on it. It doesn't remove it but cuts it back alot unless I'm flaring badly, even then it's not as bad as before the remicade. As for chondroitin/glucosamine I haven't taken it for 20 years but back then the chondroitin was such a large molecule that only 8% was ever absorbed into the blood so I considered it a waste of money. Things may have changed since 20 years ago but I'd research it first. The glucosamine I thought helped me when I was having bone lose in my knee caps. Which in hindsight I think was undiagnosed crohn's stealing calcium from those bones.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

Veteran Member

Date Joined Feb 2010
Total Posts : 925
   Posted 5/9/2010 8:58 PM (GMT -7)   

I have also noticed my back hurting a lot while having issues.

Welcome aboard Kaz and sorry you found your way here.  I felt the same as you, but remember, it's not a contest about sufferering.  No one is going to say to you to "shut up you don't have it near as bad as I do".  This boat we're all in, sucks!

Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Lialda 2X/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Change in meds is forthcoming............

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