Is it normal to experience symptoms in remission?

[sleepallday]

Following my ileocecal resection last December, I had a follow up scope that showed no active Crohn's (June 2015). At the time, I was still experiencing symptoms though decided to just listen to the doctors.

Now I'm having progressively worse symptoms that are starting to impact upon me significantly. This includes;
- Running to the bathroom as soon as I've eaten anything
- Abdominal pain (that stops me in my tracks - not a good thing while I'm trying to work!)
- Ulcers in my mouth
- Achey joints
- Constant exhaustion
- Headaches

I'm a competitive person and am currently trying to get my grades up at University whilst working every other day. I am also travelling to China with Uni in January so need to be well! I really can't afford to be dealing with this again (last year I ended up very ill, loosing 10kg and pushed into surgery over xmas).

So my question is - Is it normal to still experience symptoms during remission/ when there is no active Crohn's or is it time for me to head back to my GI?

I hope you're all well!

 

[ronroush7]

Following my ileocecal resection last December, I had a follow up scope that showed no active Crohn's (June 2015). At the time, I was still experiencing symptoms though decided to just listen to the doctors.

Now I'm having progressively worse symptoms that are starting to impact upon me significantly. This includes;
- Running to the bathroom as soon as I've eaten anything
- Abdominal pain (that stops me in my tracks - not a good thing while I'm trying to work!)
- Ulcers in my mouth
- Achey joints
- Constant exhaustion
- Headaches

I'm a competitive person and am currently trying to get my grades up at University whilst working every other day. I am also travelling to China with Uni in January so need to be well! I really can't afford to be dealing with this again (last year I ended up very ill, loosing 10kg and pushed into surgery over xmas).

So my question is - Is it normal to still experience symptoms during remission/ when there is no active Crohn's or is it time for me to head back to my GI?

I hope you're all well!

I was diagnosed as being in remission earlier this year and was still experiencing symptoms. I have been told that besides Crohn's I have IBS. Check with your doctor.

 

[DJW]

Hi Lara,

I also agree it's a good idea to check with the doctor.

BTW, I'm also going to make an appointment with the doctor. I'm starting to get some symptoms.

Best wishes.

 

[CrohnsChicago]

It would be a good idea to have any symptoms you experience evaluated. How normal it may be could depend on the severity of your specific diagnosis, your current food and lifestyle choices and the kind of treatment plan you are on/medication side effects. Ulcers are a common sign of inflammation or infection somewhere in the body.

I will say that I have been in remission for over two years now and while I am clinically in remission I still experience symptoms of IBS on a daily basis (mostly in the form of heavy gas, bloating and occasional diarrhea and constipation). I keep my doctor aware of these symptoms in my periodic checkups so that we both can assess any changes that may require more in-depth tests to determine whether or not it is in fact a flare.

But I know my common flare symptoms and that if my joints get achy, I get a little inflammed in the eyes, mouth, skin or I start seeing blood in my stool and experiencing frequent diarrhea on a daily basis that I need to especially get checked out.

Wishing you the best. Take good care of yourself.

 

[ronroush7]

It would be a good idea to have any symptoms you experience evaluated. How normal it may be could depend on the severity of your specific diagnosis, your current food and lifestyle choices and the kind of treatment plan you are on/medication side effects. Ulcers are a common sign of inflammation or infection somewhere in the body.

I will say that I have been in remission for over two years now and while I am clinically in remission I still experience symptoms of IBS on a daily basis (mostly in the form of heavy gas, bloating and occasional diarrhea and constipation). I keep my doctor aware of these symptoms in my periodic checkups so that we both can assess any changes that may require more in-depth tests to determine whether or not it is in fact a flare.

But I know my common flare symptoms and that if my joints get achy, I get a little inflammed in the eyes, mouth, skin or I start seeing blood in my stool and experiencing frequent diarrhea on a daily basis that I need to especially get checked out.

Wishing you the best. Take good care of yourself.

I have been told that as well as Crohn's I have IBS. CrohnsChicago, how can you tell the difference between the two diseases?

 

[Lady Organic]

doesnt sound very good to me. contact your GI to mention these symptoms. ulcers in mouth and achy joints can be extra-intestinal manifestations of crohns.
I have been caught a few times waiting and waiting, unsure if I was flaring or not. Not worth it in my experience. Get it checked, we are always better safe than sorry. A clean colonoscopy 5 months ago can be a long time for an IBD patient and many things can change in just a few months. now a new easy test is available, fecal calprotectine. This could be a good start for you, along with blood works. good luck

 

[CrohnsChicago]

I have been told that as well as Crohn's I have IBS. CrohnsChicago, how can you tell the difference between the two diseases?

For me personally I made myself very familiar my body and my symptoms with each and every flare that I've had. Those symptoms happened regardless of my diet or lifestyle (ex. blood in stool, cramping, mouth ulcers, gum inflammation, joint pain, diarrhea).

As for my IBS, it seems to present itself as strong or weak depending solely on my diet and level of stress (uncomfortable gas, bloating, diarrhea or constipation). I take probiotics at the recommendation of my doctor to help try and balance my gut bacteria and reduce the IBS symptoms as well as do my best to manage my diet. When I clean up my diet, the symptoms seem to fade

The important part of all of this to help determine if it's one or the other is to keep routine check-up appointments with your doctor. He helps monitor my symptoms overall and can also pick up on any changes that may require additional testing to rule out an active flare.

 

[JMC]

Yes, talk to your GI, the symptoms you have are typical of active disease. One of the frustrating aspects of this disease is that you can have all sorts of tests which do not show any disease yet still have significant problems. I had a colonoscopy and MRI scan which showed no clinical signs of disease a few months ago yet, like you, I still have urgency, diarrhoea and pain.

 

[JMC]

Given you are in Sydney I would get an appointment with Thomas Borody at the Centre for Digestive Diseases. He might be able to sort your problems out.