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AM I the only one that doesnt conform to classic Crohns symptoms?

:sign0085: I have had Crohns many years but was diagnosed 4 years ago to my relief. For the first 3 years all my symptoms were just like everyone else's with diarrhea being the most obvious indicator that something wasn't right, the Aza kept flares down and I was coping. My last colonoscopy shows 1/3 ulcers reverted to scars 1/3 healing well and 1/3 showing signs of healing.

Now - THIS year things changed, firstly I started finding it harder to find foods my tum would not turn into a flare. Secondly, I got less and less diarrhea and more and more horrible times of the worst general guts ache and that dreadful spasm pain for intervals of 36 hours to a week at a time. Then I started vomiting as well. I have never vomited in a spasm before. Sure I get water poo every 15 mins but its mid to end of a flare and rarely every day like before altho I get it occasionally for no reason at all. I treat flares by not eating and slowly add foods in when it begins to settle.

I have also developed painful spondyloarthropathy affecting my ability to walk distance, do fine hand work etc etc. Two drugs for that have had bad reactions and I had to come off them, treatment is currently on hold until after Xmas. Also I get boils on my body often and ulcers/swelling in my mouth, have lost several teeth due to infection under them - crohns related.

Now - the first thing my specialist asks me every visit is how often I'm experiencing diarrhea. I feel like a second class crohns citizen to have to admit it is not longer the worst problem, the PAIN is (and I'm losing my bravery these days.) And I know you must all be able to relate that its the worst worst pain which takes on a life of its own.

IS ANYONE OUT THERE LIKE ME? How should I approach the specialist? What should I be asking for now?

HUGS to fellow Crohnies Jen :hug:
My son is a non conforming Crohn's kiddo. We almost joke about it at his GI visits when he invariably asks the diarrhea question and we remind him that's not one of our problems. His labs are always in the normal range so no help there yet MRE showed inflammation throughout small intestine His biggest indicators of disease activity has been lack of appetite, growth and weight gain.
It sound like your disease is not being controlled as mouth ulcers and joint pain are or can be symptoms of the disease.
My husband also has crohn's and vomiting for him and spasms were a sign of a stricture . Have you had imaging, scopes done lately. I would definitely keep pushing to find out what's going on. I would list everything, all symptom out so you can talk to him about them without forgetting.
Good luck and hope you get some relief soon
Thank you for that info - it is really helpful. After a long time all the Drs sort of forget about you and Im not one for pushing it - guess I need to have a personality transplant LOL. The stricture sounds sensible, that's what it feels like, as if nothing can get down and then it leaks through in the end. Its not all the time though as there are times when I can almost be 'normal'. I guess my AI system is lazy some days ;) HUG :hug:
My understanding is there are subtypes: inflammatory, fistulizing, stricturing etc. I have stricturing, I've had a bowel resection. But never had a real problem with diarrhea.


Naples, Florida
Welcome to the community. If you peruse the forum enough, you'll find a LOT of people where diarrhea isn't the primary symptom. Heck, for some, it's constipation.
REALLY!!!! OMGosh that is the first time I have learnt that. I dont feel such a freak now :ybiggrin: I have just come out of a nasty but short flare and feeling very low. It is hard to accept that this is my life now, even after 4 years of it. I wish there were some alternative treatments to the drugs, they seems almost as bad as the disease sometimes.

fuzzy butterfly

Well-known member
Hi Jennyt yep i had the d and been constipated. Pooped for england some days n then nothing for a few days. Unfortunately you do have to be tough with the medical world somtimes hun or they do tend to leave you to suffer.I learnt that the hard way im afraid to say. Please push for the help you need n yes jm is right write it all down so you dont forget anything. Best wishes x

fuzzy butterfly

Well-known member
You are welcome love. You say get tough, your tough already girl you deal with this crap disease 😠 . So its just a case of not worrying about upsetting the medics. They got to do the job they are supposed to do.. help you get better ❤💋
I have spondylitis as well, enteropathic arthritis which feels more like rheumatoid arthritis plus the spondylitis. Good fun, the arthritis, I feel you! My sacroiliac joints are inflamed constantly as well, so I have to have steroid injections in these joints regularly as well.
My Crohn's is more painful (constant pain in the lower right) than diarrhoea-like, but that does happen as well. It seems as if my Crohn's symptoms are changing over time and I know some friends having IBD as well, experiencing the same, that it changes, or at least, can change.
It's so frustrating being asked about the number of bowel movements and feeling not taken seriously by some doctors when it's a "healthy" number.
Oh reading your post is almost as if I wrote it about me! I have a Crohnie twin:dusty: I feel for you also as we seem to be facing a similar journey with this disease. The other thing that has changed for me is the food my tum tolerates - I had it sussed and enjoyed long breaks between flares and then about a year ago foods that had been 'safe' seemed to generate flares and whoopsie - I'm sick probably 50% of the time now - like REALLY miserable with pain and all the other stuff I mentioned before. It is very frustrating, especially when the foods I can eat often are sugary and Im diabetic arghhhh. Oh well - there is always almond milk :dog: Shame I cant rub almond milk on my sore joints to make them better LOL.
The trots isn't,t the only issue with crohns I do have the trots but also can have bad constipation and when I,m going of the rails really bad joint pain.just now I,m just kinda loose haven,t had a normal motion for a year just had a colonoscopy and endoscopy that were good but still have issues its ball ache of a condition.good luck all the best
Aw, thank you Jenny! Good to have a twin Chronie ;-) I hope you feel better soon! It's so emotionally stressful not knowing what to eat because it changes all the time. Worst thing is when I find that a food I considered to be "safe" turns out to be "unsafe" when I overate it... Makes me feel so guilty then because I was overeating and could have known that anything being eaten in excessive consumption could have an effect on my body.
I manage crohns a lot by simply not eating at all - which is rather weird given that I'm plump, I should be a skinny minnie doing that eh! Because like you it keeps changing on me and good food turns bad (oh I'm so glad I'm not the only one) But when I start to eat again - I am so hungry I do what you describe quite often arghhhhh. Tonight I had my first meal for 3 days - having eaten a tiny bit of rice and tuna during that time. We went out to a concert this evening (a rare occurrence) and for dinner after I was walking the streets thinking what can I eat what can I eat - my flatmate traipsing after me poor thing. Finally settled on chinese crackle topped pork with NO trimmings - so far so good - no gurgles, no flashes of spasm, no nausea ... fingers crossed cos I gotta be well for the morning to watch the All Blacks beat the Aussies in the Rugby World Cup hahahaha.

my little penguin

Staff member
DS is similar
Constipation is a large issue
Normal bloods but has juvenile spondyloarthritis so lots of joint pain and stiffness in his hands knees heels etc....
Ulcers in his mouth and vasculitis.
Food is currently an issue for him so the Gi has him on partial enteral nutrition with the crohns exclusive diet
Plus humira /mtx for joints etc and volteran gel for daily joint pain .

Good luck
I can totally relate, Jenny! Eating out is so stressful, glad you are doing fine, fingers crossed! :) Having my first food for the day around 2pm or also even 4pm was something that helped me at some point but probably worsened my gastritis in the long run, and only helped settle my symptoms at that moment, it did not help me long term, unfortunately.