may have crohns disease

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worriedgirl
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   Posted 5/8/2018 7:07 PM (GMT -6)   
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
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

Post Edited (worriedgirl) : 5/8/2018 10:57:14 PM (GMT-6)


beave
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Date Joined Mar 2007
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   Posted 5/8/2018 10:51 PM (GMT -6)   
Back pain and muscle spasms aren't really a sign of Crohn's. They *might* be a sign of spinal arthropathy, which can be associated with Crohn's. But back pain and muscle spasms are incredibly common in the general population and can have many, many sources/causes, including ruptured discs, muscle weakness, poor posture, arthritis, bone spurs, excess weight, and countless other things more likely than Crohn's disease.

The CT scan is more important here in terms of a possible Crohn's diagnosis. I would ask for copies of the radiologist report for the CT scans you had done so you can see for yourself exactly what they found. Then share it here if you want. CT scans by themselves can't diagnose Crohn's, but suspicious findings should, well, raise suspicions and do warrant further testing.

worriedgirl
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Date Joined Apr 2009
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   Posted 5/8/2018 11:08 PM (GMT -6)   
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.
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

beave
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Date Joined Mar 2007
Total Posts : 1728
   Posted 5/9/2018 12:21 AM (GMT -6)   
Have you had any tests for your back? x-rays? MRIs? How long have you had the back pain?

I'm not saying you do or don't have Crohn's. I have no way of knowing. I do think you need more tests. Crohn's is not a normal cause of back pain, but it is possible. It's just really low on the list of possibilities. They may be related problems for you, or they may be totally separate problems.

worriedgirl
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Date Joined Apr 2009
Total Posts : 1208
   Posted 5/9/2018 12:36 AM (GMT -6)   
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.
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

73monte
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Date Joined Mar 2007
Total Posts : 1907
   Posted 5/9/2018 3:39 AM (GMT -6)   
There is only one way to confirm a Crohn's diagnosis. You'll need updated upper and lower scopes with biopsies taken. Get that done asap, and then you can move forward in your treatment.

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 10537
   Posted 5/9/2018 5:07 AM (GMT -6)   
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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

worriedgirl
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Date Joined Apr 2009
Total Posts : 1208
   Posted 5/9/2018 6:00 AM (GMT -6)   
Not really it is more to the lower back but sometimes radiates but mainly to my lower back and sensitive to the touch. Alot of pressure and at this point it seems nothing to do with my back. No injuries or anything just started hurting. I'm working on getting the tests I need.
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10537
   Posted 5/9/2018 6:15 AM (GMT -6)   
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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 5/9/2018 7:53 AM (GMT -6)   
WorriedGirl, if you don't have copies of any of your testing that has been done to date, I would get a copy of the written reports so you will have them for your own personal file.

Until you get all the appropriate testing for the bladder issue & see the gi dr there is not much you can do at this point. It's tough being in a holding pattern while going through testing weeding things out. I feel certain the gi dr will do scopes with biopsy's as that is considered the gold standard to dx crohns.

I do not understand the drs comment about the condition being chronic. If he is talking about crohns there are lots of medications available to treat it. People can have crohns & live a normal life. Try not to let this dr scare you with comments like that.

Hang in there & get your tests done.
Susie
Moderator in Chronic Pain & Psoriasis Forums

worriedgirl
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Date Joined Apr 2009
Total Posts : 1208
   Posted 5/9/2018 1:29 PM (GMT -6)   
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
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 5/9/2018 1:54 PM (GMT -6)   
Yes absolutely, I had this when I had an infection called c-diff. The smell was just unreal. A stool test should be done to rule out infections & other pathogens.
Susie
Moderator in Chronic Pain & Psoriasis Forums

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10537
   Posted 5/9/2018 2:03 PM (GMT -6)   
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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1208
   Posted 5/9/2018 3:30 PM (GMT -6)   
I don't have the smell with it but when I get gassy I certainly do and certain foods cause gas for me and then sometimes when I eat certain foods especially steak or wings I am running to the bathroom. I never thought that could mean something. if I have crohns I am not sure it is severe at this moment cause I don't have many of the complications I see here but the back pain is the worst. especially when they have looked into everything under the sun for back issues it feels and no results. I also read up on the fibroid tumors and found out that can cause the same kind of pain in the back like crohns so I am not sure if I have a double edge sword or if this will come back inconclusive. its frustrating not having a diagnosis. i am a strong believer that once you find the cause you can treat the problems. and the fact he insists i keep taking gabapentin when i told him it doesn't do anything to alleviate the pain. doesn't even touch it.
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 5/9/2018 4:35 PM (GMT -6)   
By chance has you every had any testing on your gallbladder, like a HIDA Scan?
Susie
Moderator in Chronic Pain & Psoriasis Forums

worriedgirl
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Date Joined Apr 2009
Total Posts : 1208
   Posted 5/9/2018 4:52 PM (GMT -6)   
no i haven't. they are going with a ct scan and any ct scan i have ever done has shown my gallbladder fine but can the gallbladder cause the back pain
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1728
   Posted 5/9/2018 6:30 PM (GMT -6)   
Kidneys, bladder, gall bladder, liver, and pancreas can all cause back pain.

worriedgirl
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Date Joined Apr 2009
Total Posts : 1208
   Posted 5/9/2018 6:51 PM (GMT -6)   
my kidneys have been ruled out as a issue and previous scans show gallbladder to be good. when my stomach pains that i get once a year or so started they checked gallbladder and determined it not the issue. my liver is good and my pancreas is as good as it can be seeing i am a diabetic. so then it lies with either bladder, which can be a issue if what the er found to be true and crohns if there is no back problems found to be causing this pain.
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 5/9/2018 7:20 PM (GMT -6)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 5/9/2018 7:27:10 PM (GMT-6)


worriedgirl
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Date Joined Apr 2009
Total Posts : 1208
   Posted 5/9/2018 8:50 PM (GMT -6)   
i am also wondering about the fibroid tumor in my bladder. and i certainly will explore all aspects that this can be. i am left with more answers than anything and i am just trying to find the answers. the only reason why i am suspecting the crohns is the fact that this isn't the first time they suspected this with me which leads me to believe that there is something to it. i don't want to keep trying for answers i want answers and unfortunately it is not happening as fast as i like but it has been 6 months and no answers. i am beyond frustrated and upset. you would think after 6 months id have a diagnosis of what the problem is
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1728
   Posted 5/9/2018 9:13 PM (GMT -6)   
Get a copy of the radiologist report for the CT scan you had done at the ER last year.

worriedgirl
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Date Joined Apr 2009
Total Posts : 1208
   Posted 5/11/2018 3:38 AM (GMT -6)   
that is what I am going to do when I go back to the pain management dr if he can pull it up. today I ate some chocolate, I know I shouldn't being diabetic but I did, and afterwards my stomach hurt and been a little gassy. Thankfully not smelly like the sometimes get. I am still waiting on the call stating to make an appointment.

question though is should I get a gastroenterologist and have him do a full work up on me? apparently there are a number of things that could be causing my back pain? and then do I get a dr to check out the fibroid tumor in my belly? or do I wait for the ct scan and see what they say?

I don't know why it is this hard to find out why I been in pain the last 6 months! many drs trying to fix it and yet no one looking into the real cause and now this dr seems to be but at same time way he talks I am going to have pain for the rest of my life because crohns is not curable and the arthritis in my back. he also stated they don't do meds for the pain. not that I want to be on meds forever but what about something until they figure out what is the cause and get it treated so that I can stop hurting. I go a day or two with minimal pain and then I start hurting again.
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.
ADD-diagnosed 2010
Diabetes- diagnosed 3-29-2012. only using low fat and low carb diet and victoza 1.2 mg in morning and 100 mg Januvia at night

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 5/11/2018 6:21 AM (GMT -6)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 5/11/2018 9:30:46 AM (GMT-6)


NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10537
   Posted 5/11/2018 8:13 AM (GMT -6)   
- A CT scan has shown evidence of Crohn's twice.
- You have loose stools/urgency/near accidents
- Lower back pain can be a symptom of lower GI inflammation

I'd be making ruling out (or confirming) IBD my top priority at this point if it was me. Yes, that means seeing a GI.
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