My daughter was recently dx with indeterminate colitis, but had "hip" pain for 6 years prior to her flare. She has an IBD linked sacroiliitis and enthesitis. Could you have developed arthritis symptoms? She had sort of inconclusive regular testing, but an MRI proved otherwise. Her father has psoriatic arthritis, and others in his family have sero negative spondylitis and ankylosing spondylitis. I'd ask about that. It's not uncommon to have arthritis with IBD.

Thank you for your ideas. I also thought, maybe I have arthritis now! I'm going to push the issue to find out what is the cause because I can't handle the pain. I'm going to bring that up at my next appointment.

Hi Lovedby2,

I wrote this to someone else who was having this sort of problem about 2 weeks ago but I will repeat it here......

I had my colon removed over 20 years ago but had been diagnosed with Crohn's a few years ago. I have been having inflammation in my joints and low back pain for years. I recently have been having hip problems also so I went to an orthopedic specialist. I am having pain in my hip and sacrum so the doctor sent me to physical therapy and I now do specific exercises for it. Here is a link explaining it. Something like this might be going on with you too. It might be worth it to go see an Orthopedic Specialist.

http://www.spine-health.com/co...l-about-sacroiliitis

There is also information about all the extraintestinal manifestations (diseases outside the intestines) of Crohn's and Colitis on the CCFA website but I can't find this specific info about the hips, low back and sacrum this right now.

Thank you.

I also have IBD related arthritis and the sacroiliitis that would not quit is what sent me to my doctor.

I also took ibuprofen for years. It helped a lot with the joint pain, but eventually pouchitis and liver inflammation meant I had to stop. Then my arthritis really flared. I think you need to stop the ibuprofen too.

I am now maintained well with Azulfidine and Simponi. I still need daily Norco for pain though.

Jan

Jan I'm glad you chimed in. I also feel I need to stop the ibuprofen because sometimes my stomach hurts. How do you get the Dr to keep giving you a pain medication, I'm in daily pain and can't get out bed most days...I feel like I'm doing something wrong when I ask for a narco.
Also I have been complaining of pain for so long and I get no answers. They always want to tell me, must be an infection or something else.

I found some info I referred to about arthritis and joint pain on the CCFA website.

http://www.ccfa.org/assets/pdf...tiscomplications.pdf

I want to chime in with something that I learned when I had my Gracilis muscle flap done years ago...
The leg pain (and sacroiliac) was atrochous...the pushing and forcing when on the throne made things worse. The PT taught me a couple of tricks (that I still try to use today)...
When on the throne I was told to turn my toes inward (pigeon toed)...to relieve the tenstion on the saciatic nerve and related muscles and to use a small step-stool (about inches high) and always place your feet on it while there.
It worked while I was in the hospital and helped a lot.
Sharon

Hi Sharon. Great advice, thank you. I do have to push or force things out most of the time...even though it is diareah. When I first had me take down a year and half ago I use to sit like and egg on the toilet, with my knees to my chest, just to go!

I'm up tonight, 3:30 am here and in debilitating pain. My surgeon filled my pain meds yesterday and when I mentioned the sacroilitis, he said possible but that my last CT scan didn't show a lot of inflammation in my sacrum! But did with everything below and that could be causing the pain to run down my legs, hips, and butt etc...

He also said the only way to help that is to, again give me a temp loop iliostomy for about 3 months to rest that area from use and clear the severe inflammation. He's been telling me this since February and I'm finally giving into that option because I'm 32 years old and can't get out of bed in the mornings and the pain is controlling my life. I have a 3 year old and 6 year old that need me to feel good. My worry is that I take dramatic measurements, have the 2 surgeries and my pain is still here.

I am so sorry and know exactly how it feels...the pain is so bad sometimes that I cry on the way up the hill to the subway (the only way for me to get to work)...
There are some movements, exercises and foods that can help or hurt and it helps to know which ones are best for you.
I am no guru but I have learned to use the Swiss Ball to stretch my lower back out and to give myself some relief (expeciallly before going to bed) and I have two smaller ones that I work under my back, legs and spine to releive some of the nauseating pain...Rolling around on them does wonders an puts pressure on the hot spots and releases some of the knots.
If you look it up on the internet you can find dozens of sites with tutorials and pictures (that is how I learned what helps).
As for foods, I eat lots of protiens and fruits/veggies but avoid most startches, carbs etc (but have yet to cut out the sugars)...dairy seems to add to the inflamation so other than ice cream and goat cheese I aovid it.
Heating pads, hot baths or showers do wonders but honestly the best help is those darn balls.
It takes time but it slowly helps.
I hope that you find some (non-surgical) relief from the pain
Sharon

Make an appointment with a Rheumatologist. I have Ankylosing Spondylitis and was at a point where I could barely walk without horrible pain. Even rolling over in bed would bring tears to my eyes. When Remicade was released, my Rheumatologist sent me for a dose, not sure if it would help, but it did. I literally went from barely being able to walk to being pain-free and roller blading within days.

Eventually the Remicade began to lose its effectiveness on me, and I switched to a different Anti-TNF drug (classification of those medicines) and am now have been using Humira for 10 years. They are not without risk, but I got my life back.

They used to prescribe these meds with a last-resort approach, but I know the thinking on that has changed. It has been found that they can prevent further permanent joint damage, though I know insurance plays into it a lot because they are expensive for insurance companies to cover. I tested positive for the HLA-B27 antigen, which made it easier to get the insurance company to agree.

On the plus side, I haven't had pouchitis or cuffitis even once since starting them.

Make an appointment sooner rather than later -- there is no need to suffer. Good luck.

Thank you. Definitely going to keep pestering my Dr to refer me.

Loved,
I just got back from a rdv with a foot surgeon (sounds like a joke, I know!) and I came out with a lot of interesting information.
I went in for bunion surgery information. I got a lesson in anatomy and how the foot tells the story of pain throughout the whole body.
I found out that my calve muscles are shorter than they should be (80% of all women have this problem due to inappropriate footwear and high heels)and that they pull up on the achiles tendon which in turn forces my foot to come down the 'wrong way'. He then went on to describe most of my lower back and hip pain.
I will be having some x-rays and then he is going to give me the exercises to do to stretch out the short calve muscles so as to prevent the hip and foot pain.
Gheeze...if only I would have known sooner!
Seems that he can relieve a good portion of the pain elsewhere. So while you are getting refferals to rhumatologists see if maybe you can get one to a foot specialist....it all starts in the feet aparently.
Sharon

Interesting! Thanks Sharon, adding that to my list of questions for my Dr. It would be nice to get some energy back without pain.

KangaRoe,

The CCFA article you posted mentioned Remicade and others. Aren't those immunosuppressants? Why would someone choose to Acquire and Immune Deficiency? Seems like you could catch a cold and then next thing you know you die from Pneumonia. Death is listed as a possible side-effect. I'd have to admit, that would take care of the pain but it seems like a pretty harsh way to do it.

...you do have a point there...But at least you can be sure that the pain won't come back!
Sharon

My Dr has always stayed away from those for just that reason...the side effects! He said the same, your fighting for your life just to end up with a another life threatening aliment.

I had horrible lower back/butt-cheek/leg pain as well - for years, mostly prior to the colectomy. I had to use a crutch to get around - when I could get out of bed, that is. I understand your pain, it absolutely brought tears to my eyes.

I saw a rheumatologist, the first one told me it was ankylosing spondylitis; the second wondered why the first told me that, as he saw it as sacroiliitis. Whatever it was, I took waaaay too much ibuprofen and I believe it did a number on my intestines/pouch, so be careful with the NSAIDs.

My pain completely went away about 7-8 years ago. I understand the sacroiliiac joints can fuse after so much inflammation, so maybe that was what happened, maybe it was having the colon gone, idk.

A rheumatologist may prescribe pain killers for you, they know how much pain you are in. I was given tramadol - but had an allergic reaction. I also saw a DO who did manipulations, which helped slightly.

Otherwise, it was so difficult to find relief from the flares of pain, I am so sorry you are going through this.

I think you need an MRI to rule in/out arthritis. A CT isn't sensitive enough.