Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.
(a bit of a back story to get to my question so bear with me!)
I am 26 years old and was diagnosed with Crohns a little over a year and a half ago. I've been on Humira for about 20 weeks. I have had horrible and traumatizing experiences with multiple doctors trying different medicenes that didnt work and then blaming me when they didn't work. I never had extreme weight loss with crohns because I also have methane dominant SIBO which causes constipation and over absorbition of nutrients.
Anyway, this has made it really hard for me to work with Doctors, espcailly when they start talking over you etc. I just shut down because I've been so mistreated. My last appointment, while still explaining I was having abdominal pain and discomfort, watery loose stools, and pain while going, having to go during the night etc. My doctor kept saying that Humira was a strong medicene and it should be working (which i believe it has to some extent , just not as much as I'd hoped). He kept repeating that it must be IBS and that I should try a fiber supplement. I did and it was the worst experience I've ever had in the bathroom. The pain was so bad, and it lasted for hours. Just crying in the bathroom wishing it was all over.
I haven't gone back to my GI because of this and am going to be switching. However, my joint pain has gotten really bad. My ankels, knees, elbows and hands, ache regularlly. My lower back and hips have become the worst. My lower back constantly throbs and almost burns? and its like I can feel the pain slithering into my hips. Especially on my left side. When I try to bend or lean it can seize up sometimes. I tried healing it like other muscle pulls I've had in my lower back, but nothing helps. Not heat or epsom salt or rest. Currently I'm laying in bed and its just throbbing deep into my left side near my spine, and deep inside into the center of my hip.
My question: Does anyone else experience this back and hip pain? What did you do to deal with it? How did your doctor react? Do you have any advice for dealing with doctors?
My mental health has really struggled since diagnosis and before . Some is directly related to SIBO and Crohns, but I am TERRIFIED of going to the doctor again. I have panic attacks about it. I just start crying because I feel like they won't believe me, and just tell me its because of my weight or that I have IBS. Meanwhile I live off chicken noodle soup or broth- I splurge with an orange here or there. No coffee , tea etc. Only water, or hot water with lemon and raw honey (if i'm sick). Basically if its not liquid, or mainly liquid , I have a hard time.
I'd love to hear any similar stories to commiserate or any advice or tips from people that have experienced this. I just dont' want to feel so alone in this. I thought this might be a good place for that.
Thank you for reading and sharing your time.
p.s. sorry for any misspelled words or grammar mistakes, was kind of an emotional time writing this!
Reply posted for davidmmulder.
Thank you so much for writing this! I thought I was going insane. My abdomen would start to expand and tighten as if I were having Braxton Hicks. Then.... the excruciating pain in my back and hips would start. The pain made it impossible to sit, stand, or walk. The only way I could find relief was to stand up and lean on the back of a chair and let my swollen, not pregnant, belly hang down while somebody rubs my back. I’ve had four kids, and I have to say labor was nothing like this pain. At least then I knew I was working towards a baby. There is no prize at the end of this pain spasm.
Reply posted for Homeric1.
I have regular lower back, hip, and elbow pain. At it's worst, my joints seize and sometimes the skin around the joints will blister and boil (like a really bad burn). I mostly ignore the pain now (going on 15 years), but when it gets really bad I alternate heating pad and ice, or take some Tylenol. When my joints seize I have to take Prednisone to calm it down. A couple years ago I had to see an Instacare doctor for it while out of town. He insisted on doing an x-ray before treating with steroids. He said my hip joints looked like I was an 80 year old man! I'm 30! Unfortunately, steroids seem to be the only thing that works well for me.
Reply posted for kellyn829.
hello, I have bad back and leg pain from a bulging disc that has just been recently found but i have always suffered from joint pain from time to time. When i went to the doctors he wanted to give me a blood test to check for anklylosing spondylitis as he said chrons and joint pain can be a symptom but very few people have it from chrons. Tests came abck fine just a vitiman D diffiency which can cause lower back pain and joint pain. It is worth taking some vitiman d tablets and eat more oily fish and try to go out in the sun more. Anyway something that helps relive my back pain even though it is from a bulging disc but helps alot of other back issues is exersice, such as swimming, stretching, exersices that strengthn your core and walking, these also help my joint pain i get Sometimes. Sorry to hear that your doctors are not taking you seriously but you need to keep going on to them about the pain you are having and ask for some tests done.