Crohns symptom free still inflammation

[NikkiBaker]

Hi
I'm new here so please be patient with me lol.
I got diagnosed in 2005 with crohns in the terminal illium it took me two years to get it under control. In the last year I have been symptom free apart from a have symptoms for two days and then it clears (in my head I was thinking this mayb a partial blockage) anyway was feeling really good thinking I was In remission (no maintance drugs either) then have a routine colonscopy and I'm told that I have bad inflammation and a partial blockage that they couldn't get through. Now I'm really worried as the inflammation has been getting worst with no symptoms.. Has anyone else had this and what problems has it caused?
Also how long after being diagnosed with a partial blockage did surgery take place. (already discussed surgery but unsure if time scale)
Thanks x

 

[Angrybird]

Hello and welcome to the forum

It is possible to not have obvious symptoms whilst things are bubbling away inside, I started having a few tummyaches last year and it turned out to be a stricture that required an op. The scope confiming the stricture was in May and the op was in September, by the time it came round I was in a pretty sorry state with Modulen shakes because solids could not get through the narrowing without horrendous pain.

Out of interest why were you not on any type of maintainence meds? What meds (if any) have you been on previously and have the docs now given you anything? It the blockage down to scarring or inflammation?

AB
xx

 

[NikkiBaker]

I came off any maintance drugs when I feel pregnant as I did not want to risk any problems with my baby that was begin of 2009 before that I was on prednisone, immune supresser, and pentasa...
They r just waiting for biopsy results but think its scarring. I'm currently taking steroids.
It has really worried me that thought I was really healthy and doing well since having my child and then to see that inflammation has scared me a bit. In my head no symptoms meant healthy... at least I have maintained a good weight ready for op etc.
Sorry u went through a rough time I hope things r going well for u now?
X

 

[Angrybird]

How often would you get those 2 days of symptoms before they cleared up and for how long? This might have been a sign of things to come. I think the issue with folks like us is that we get very used to living with these things so that we forget that they are not actually normal.

Yes things are good at the moment tummy wise. I had a huge flare just before christmas and after some steroids and a second go with the Azathioprine which didn't go well I have ended up on 6-mp and this seems to be doing the trick.

AB
xx

 

[NikkiBaker]

Yeah I think that is the problem we get use to pain and other symptoms. But the pains started about 3 months ago and was happening at least once a week I would get really bad pain (like labour pains) be sick and have d.. This would last about 24-48 where I would stop eating then go back to normal ( my tummy makes this loud noise then I get cramps never had that before!)
The worst was when I ate popcorn (I just didn't register tht it would make me poorly lol)
It has made me think I need to be careful even when feeling well as I don't no what Is happening inside

 

[KWalker]

Hey Nikki! I am also like yourself and not on any maintenance meds right now because I too am feeling symptom free. There could very well be problems going on inside but I just keep a close eye on it and would go to the doctor if the time ever came that I did need meds.

 

[NikkiBaker]

Hi k walker
I always feels good when ur feeling well and r on no maintance drugs but I think I'm going to accept maintance drugs after seeing my inflammation and not having any symptoms scared me to think I was in remission but actual causing my body more damage
I hope u have a long time of remission u must be doing something right for your body
X

 

[KWalker]

Funny story, I'm actually not in remission and my scopes show active crohns lol. I just look at it like if I'm not having any problems I might as well enjoy not being on meds while it lasts. Its been since 2010 now and so far its going well