may have crohns disease

many years ago they tested me for crohns by ct scan and told me once before I may have crohns but then when they did the colonoscopy they said no so I was happy. I went on with my business.

well fast forward to today. I been having severe back pain and muscle spasms. many different diagnoses and treatments and nothing is working. I go to the pain management dr and they try me on gababpentin which I told them wouldn't work cause I already tried it but they insisted. so two weeks later im still in severe pain so I go back and the nurse practitioner looks through my medical history. apparently when I went to the er a year or so back they did a ct scan due to stomach cramps and apparently found evidence of crohns disease as well as a fibroid tumor in my bladder. yet they didn't tell me. so I have to get a ct scan with contrast, had bloodwork, and see a gastroenterologist. and they think that is what is causing my severe back pain. also I get to get injections in my back. I am at a loss on what to do. I mean it makes some sense since it was something that was thought of before. could explain why sometimes the urge to go to the bathroom hits and I am running to the bathroom to avoid a accident. or why I seem to have the runs a lot lately. but the fact that the er didn't tell me makes me more angry everytime I think of it. had they told me prior I would have gotten the tests and who is to say I would have avoided the pain I am in now. and why after many dr appointments is a nurse practioner noticing this and not a actual doctor. I am so tired of being in pain and I just want answers. he basically told me that this is chronic, im going to be in pain for the rest of my life. at this point what is the point of life. (no I am not suicidal I am just so upset and not feeling very well at all) my husband and my daughter already feel I complain a lot and now its going to be something I have to live with

anyone have severe muscle spasms up and down their spine due to crohns and what am I in for here if they are correct. im thinking since this is my second time round with being tested for crohns that there is something to this claim.

not sure what to think or feel. can you help

yeah but he is saying that the inflammation could be what is causing the pain based on my symptoms that I never thought was a big deal and the er findings time back. this is not the first time I have been suspected of having crohns. they have tried every other diagnosis for my back pain. the back pain is not just on my spine but in my lower left side to. he thinks the inflammation is causing pressure on my back as well as could be the fibroid tumor. I did look up on crohns and the fibroid tumor and back pain is one of the symptoms albeit it is not a big indicator but he feels that is where I am at now. I will be going to get a ct scan with contrast, last one I had years ago showed signs of crohns so what if he has a point to this. at this point I am frustrated to the max. maybe it isn't crohns but why do I feel they are onto something? is it because its not the first time that they have suspected it.

I am trying not to grasp at straws but something is going on here and I am at my breaking point. he asked me these questions before I even had a chance to suspect anything. I often get the urge to have to go to the bathroom and then im running to avoid a accident. most the time I am not solid I even forgot what that is like but I just put it to I am getting older but now for a second time I am being told crohns and by two different doctors. maybe the first colonoscopy I wasn't as far along in the crohns to properly diagnose me.

have had mri's, xrays, physical therapy chiropractic visits. the back pain has been going on since November, started out on lower left side, radiated to the spine, and completely sensitive to the touch. they have said so many diagnosis that they are out of possibilities that would come to the back. my spine is in pristine condition, slight degeneration but not enough to cause this pain and I have some arthritis in the back but again not enough to explain the pain and the sensitivity. I cant sit back on anything or even touch it. there is a lot of pressure and t hey have ruled out anything to do with the back.

he thinks the back pain could be caused by the inflammation of the crohns but who knows and I am at my wits end. at least if I can get a diagnosis then maybe just maybe I can get a treatment. all I want is a diagnosis so I can get a treatment plan. is that so much to ask for. I am really really really at my wits end. not sure how much I can take at this point.

worriedgirl said...
I often get the urge to have to go to the bathroom and then im running to avoid a accident. most the time I am not solid I even forgot what that is like but I just put it to I am getting older but now for a second time I am being told crohns and by two different doctors. maybe the first colonoscopy I wasn't as far along in the crohns to properly diagnose me.

Well, that sounds like highly possible Crohn's or UC to me. If you didn't have the CT scan evidence, I'd be a lot more cautious, but you do.

I second what 73monte said. Get full testing for Crohn's done: colonoscopy with biopsies for the colon, MRI scan or capsule endoscopy for the small bowel (*not* a traditional endoscopy - those don't go any lower than the duodenum).

PS: It's fairly common for colon inflammation to cause low back/pelvic pain. But what you are describing sounds like back pain all over: I don't know whether Crohn's can cause that kind of pain, in all honesty. But I wouldn't rule it out completely - it can have knock-on effects in many other parts of the body.

Sounds like it could be referred pain from lower GI inflammation then.

Oh, and don't be tempted to take any steroids or other IBD meds before geting tested. Not that I think it's very likely you will be offered a course of Entocort or mesalazine, but some docs will prescribe something to treat the symptoms whilst the patient is waiting on tests. You don't want to take anything which might mask any intestinal inflammation in the meantime.

I hate asking this question but has anyone had bright green poop with this. I am getting used to not being solid and even stomach pain when bathroom sometimes but the green is kind of gross

Green poop can be a symptom of bile malabsorption too. If you don't have the smell of death with your BMs, bile malabsorption is perhaps the more likely explanation.

By chance has you every had any testing on your gallbladder, like a HIDA Scan?

Kidneys, bladder, gall bladder, liver, and pancreas can all cause back pain.

The HIDA Scan checks the function of your gallbladder. My upper gi was considered normal because I did not have stones. Therefore, they did the HIDA Scan & found that it was not functioning right. A CT will not show how your gall bladder is functioning. Eating certain foods & getting sick afterwards sure could be the gall bladder.

I am wondering some also about the fibroid in the bladder, hopefully you will get some answers on that soon.

Get a copy of the radiologist report for the CT scan you had done at the ER last year.

The gi dr should do scopes with biopsy's to determine if you have crohns. As mentioned before, this is considered the gold standard dxing IBD's. A CT should not be relied upon for a dx because the will not be as clear of a view as what is seen with a scope but most of all they rely on the biopsy's, that tells the story. I would push my gp to make the referral to a gi now, it can take awhile to get in with one & then awhile to get the scopes ordered & approved by insurance.

I would wait & see what shows on the CT for the fibroid in the bladder. Once that is done your dr will decide what care is needed. A gi is not the dr for that issue. Try to slow down & get through the testing one at a time. If you are on the net googling things, stop, it is just stressing you out & not helping your situation at all. A zillion different things can pop up when plugging in symptoms & none of them be right. If you want to learn about crohns check out this site, CCFA.org. It is the best site to learn from & has reliable information. My gi wrote it down on paper & said go here & read you will learn a lot.