Lower back pain

[Tim641]

I've been living with Crohn's disease for almost 3 years now and for the past year I've been getting extremely bad lower back pains. It gets to a point where I won't be able to stand up without being in excruciating pain and it's a little tough because I'm still in my teens and so half the time I won't be able to do what the rest of the people can. I'm currently on Azathioprine and budesonide and I've read how you can have other complications. I'm going for an x ray tomorrow but I wanted to know if anyone else has experienced anything like this and how you overcame this problem.
Lately it's just getting worse. I can't focus on work or stand or slouch. I can barely find a position which is comfortable for my back.

 

[Cross-stitch gal]

I don't have any advice. But, wonder if you have checked out our Teens Only part of the forum. This might help you talk to others your age that might be going through the same thing. Here's the link to it below.

I'm also tagging valleysangel92 since this is one of her support groups and am thinking she might know a member who might be able to talk with you...

http://www.crohnsforum.com/forumdisplay.php?f=67

 

[Tim641]

Thank you. I could really use the help right now

 

[Cross-stitch gal]

I totally understand. Even though valley is no longer a teenager, she's gone through a lot with this challenge of ours. So, I know she'd be great to talk with and she's a very close friend of mine too.

 

[ronroush7]

Have you tried a chiropractor?

 

[Jabee]

Have you been evaluated by a rheumatologist? Maya142 has two daughters with juvenile spondylitis which can absolutely accompany crohn’s. Does the pain affect you more when you are still for a period of time (in the morning and/or after sitting? An X-ray will only show damage already done, not active inflammation.

 

[Tim641]

The pain is definitely worse when I'm still for a period of time. I haven't been to a rheumatologist either.
I'm transitioning into the adult clinic so maybe they might do something further to help with this issue.

 

[Maya142]

Hi and welcome! As Jabee said, I have two daughters with spondyloarthritis (a type of arthritis that is associated with Crohn's). My younger daughter has Crohn's too, my older one just has arthritis. It can affect any joint, but often affects the sacroiliac joints, which results in lower back pain. The pain is typically better with movement and worse after inactivity - such as sitting through class or sleeping.

It is often diagnosed in the teenage/young adult years. It is usually treated with a biologic, though if it only affects peripheral joints (joints other than the SI joints/spine - such as knees, elbows, fingers, ankles etc.) then Methotrexate or Sulfasalazine may be tried.

A rheumatologist would diagnose and treat SpA. Generally an MRI is needed to see if there is inflammation in the SI joints to diagnose SpA, in addition to a clinical exam and blood work (to check inflammatory markers and a gene called HLA B27 which is associated with SpA). Sometimes ultrasounds are also used to image and see if there is inflammation present, though they are not usually used for the spine.

It is a chronic illness, but like Crohn's it can be treated and managed. I would ask for a referral to a rheumatologist.

I would NOT use a chiropractor until you have been cleared of SpA - chiropractors are not recommended for people with SpA because they can inadvertently cause damage to the joints.

While you are waiting, heat and ice might help. Gentle exercise, such as biking and swimming also may help. A TENS unit may help and you can get them online, fairly inexpensively.

Here is some more info about SpA:http://www.crohnscolitisfoundation.org/assets/pdfs/arthritiscomplications.pdf

Good luck!

 

[Tim641]

Thank you so much I'll definitely be trying these until my next appointment

 

[cmack]

Have you tried a chiropractor?

I would get medical clearance from your doctor first, then I would try a chiropractor. I have had a good chiropractor that has worked on my spine and ribs. The pain can be terrible, just from being misaligned a little. More often than not, I felt way better after an adjustment.

 

[valleysangel92]

Hello, welcome to the forum!

As cross-stitch says, I've been dealing with these issues since my teenage years, and while I'm no longer a teenager myself, I really can relate to the unique issues that come with having a chronic illness while contending with growing up.

I have had joint problems for at least 12 years, and was incorrectly diagnosed with Fibromyalgia for a while before having the diagnosis of inflammatory arthritis. In my case, my doctors think that I have seronegative RA, which means that I have a form of rheumatoid arthritis but it doesn't show in my blood work or on scans. We are currently still testing this theory and making steps to ensure that this is the correct diagnosis, as Maya says, SpA is a real possibility with Crohns, so I'm taking steps to make sure that nothing has been missed.

X rays are a good starting point when looking into joint issues, but they dont pick up everything. If you can request bloods, then it may be worth asking them to check your vitamin D and calcium levels, and also ask them to see how your iron and B12 levels are, as having lower than normal levels of these vitamins and minerals can contribute to joint pain. I don't know where you are so I'm not sure how easy it is for you/your parents to request imaging etc, but its worth thinking about if you can, especially if your other testing draws a blank.

In terms of pain, heat is great, I have an electric heating pad that I can lay on or place on aching joints, and it makes a really big difference, it's even safe to sleep on so I can use it at night. Hot baths are also good, soothing muscle rubs can sometimes help but personally I don't find them very useful.

I know its difficult when everyone around you has so much energy and wants you to get involved in things, but try to pace yourself if you can. I find it helpful to try and prioritise the things that really need to be done, and let smaller things slide if needed, its good to try and leave yourself a little energy to do something fun too. Remember to rest if you're feeling really tired and try to be kind to yourself. You didn't ask for all of this to happen, so it is in no way your fault and its OK to take a break.

At the moment I can't think of anyone specific to tag for you, but it could well be worth trying out the teenage section, its quite quiet on there but usually people will respond when they see a new post.

Please don't be afraid to ask us anything you like, or even just rant. Although many of us are older, we do understand the trials of having chronic illness and having to cope with the pressure of trying to keep up with regular life. You are not alone in this and we will all do our very best to support you.

You are also very welcome to message me if you feel you'd like a one on one chat, sometimes it's easier to chat to one person rather than post openly to a full forum.

 

[Tim641]

It means a lot to have all this support and I am grateful. Thank you for helping me through this and for giving all the advice and support I needed. Hopefully I'll soon find out why my back hurts.