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anyone else have crohns but symptoms arent really gut related?

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Crohn's Disease
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Posted 10/13/2010 1:27 AM (GMT 0)
Hi all!

I was diagnosed and had surgery quite awhile ago (7 years ago) they removed part of my bowel, colon....i went on meds sometime after that pentasa and steroids and havent been on any crohns meds in 4 years or so.....

i do have runny bowels at times, or that need to go, but stomach pain has seriously eased up and i do not feel the gut pain...i go to the bathroom alot, but i guess i have just adjusted and i do not think it is really that bad. i could also eat healthier, eliminate wine etc. but my stomach doesnt seem to bother me all that much anymore, or i guess not enough of an inconvience to prevent me from enjoying certainly things.......it hasnt really gotten in the way of work that much etc. it comes and goes....mostly it is diarreah.wow lots of tmi in this post!!

but what has bothered me is everything else, aches, pains.....i had taken arthitis meds years ago but they were remived from the market with all kinds of warnings. so my back kills, my teeth too..........gums swell randomly, losing tooth enamel etc....back stiffness where i have to hunch and slowly straighten, dry skin, rashes, skin senstivity, fatigue.the worst of it is i really feel like i am like 90 yrs old instead of 32. i suspect my fertility is low as i have not been able to be pregnant - except for a miscarriage 2 years ago.

could it be something else? it all comes and goes, i can feel achy for a week and then pouf! gone for a week or two. always a bit of aches but the days where i feel normal i guess you just forget the aches and pains..what is normal anymore.

sigh, sorry for the ramblings, i guess i am just curious if there are any crohns sufferers who seem to have all other related issues and no so much of the typical symptoms? i was even gaining weight before the diagnosis, probbly being the reason why it took so long for them to decide i had it in the first place......

just really frustrated! thanks for reading this post and to anyone who responds. much appreciated!

Posted 10/13/2010 1:45 PM (GMT 0)
Well to be honest it sounds as if you might be flaring some. You really should be on some type of maintenance med at all times. This is a chronic and incurable disease that really needs to be treated always. I like you had a period where I didn't think I needed meds. It ended very ugly with an emergency resection and then had to have another only 3 years later.

When you are not treating the disease and it flares again you will have a very hard time getting it back under control, if you are not treating it. The joint issues are related, the diarhea is related, the rashes are related and the fatigue is most definetly related to Crohns. In fact the joint issues are usually the first precursor to a flare. I would get in with your doc soon and get some testing done and see the state of your Crohns and definetly get back on to meds. Good luck!
Posted 10/13/2010 3:54 PM (GMT 0)
I have had cd for 40 years and it started moving into my throat and mouth, i get cankersores and last night I had to go to er for food that was stuck in my throat, because my throat is swollen or flared, and I had to under go emergency endoscopy at 8 pm, rem did help my throat at first but now it doesn't help anymore. so cd can effect from mouth to anus.

Posted 10/13/2010 5:15 PM (GMT 0)
MissiBee,

Although you may feel that your digestive system is working ok, the other stuff (joint pain, etc.) is telling you something.  The arthritis pain you're feeling is probably a result of inflammation in your gut, whether or not you have diarrhea or whatever.

My primary complaint for years has been joint pain.  I also have bowel problems, but they are not disruptive, and I usually don't find them too painful.  I have been seeing a rheumatologist along with my GI, and the rheumy always encourages me to push the GI to treat my bowel more effectively; this will relieve the joint pain.

Perhaps it is time for you to see a rheumatologist, too.  I do agree with previous posters who've said that maintenance medication is absolutely necessary to manage this illness.

Posted 10/13/2010 6:34 PM (GMT 0)
Thank you for your responses.

Yes, I imagine you are all correct....it is just an ugly truth I suppose...also thinking I was OK off meds was per my previous gastro, who basically said that the surgery "cured" the condition and then when I had a flare up put me on the meds but said if I was fine off, then that was ok too (had showed no signs on that last colonoscopy)

I am waiting to get a Dr...i moved provinces (Ontario to Quebec) and I have been here and unable to get a family Dr in the last year that I have been looking (sorta given up as every time I call I cannot find one accepting patients) I also find it frustrating (happens in the past and I am sure you can relate) that when you finally get to a Dr. you are having no symptoms that day and they look at you like you are a complainer or hypocondriac!.....

I need a family dr to get a referral for a rheumatologist or gastro from my understanding. When I called the hospital to inquire they advised it was 1-2 years waiting list to get a rheumie...How do people get care in this province? I guess I just have to march myself into emergency and sit there until someone looks at me.

Sorry for the ramblings, just find the system very frustrating!!!

Thanks all!

(But if anyone has any tips on how to get medical care in Quebec - Montreal specifically please let me know - much aprpeciated!)

Posted 10/13/2010 7:29 PM (GMT 0)
Missbee I had a irresponsible gi (now fired) tell me after my first resection that I no longer needed meds. I ended up having to have a repeat only 3 years later due to another obstruction. I am lucky in that I am maintained solely on Asacol, one of the mildest crohns meds out there. I take my meds religiously now. Good luck!
Posted 10/13/2010 7:30 PM (GMT 0)
Missbee I had a irresponsible gi (now fired) tell me after my first resection that I no longer needed meds. I ended up having to have a repeat only 3 years later due to another obstruction. I am lucky in that I am maintained solely on Asacol, one of the mildest crohns meds out there. I take my meds religiously now. Good luck!
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