Feeling unwell for 6 weeks

[Molly1997]

I was diagnosed with Crohn's disease in 2013 at 16. I've been in remission for over six months now however, have never been symptom free! The past six weeks I have suffered from painful diarrhoea, which I think is a result of insufficient movement of my bowel, causing me to become so backed up, that the only way for faeces to leave my body is if I have diarrhoea and sickness. I have a lot of symptoms now that my Crohn's is active, I have ulcers, fatigue, mood swings, nausea and inflamed knees; it's also excruciatingly painful to pass diarrhoea and I've been throwing up all day and night. It is not as bad as my usual flares however I am wondering if this is going to lead to one as I have the dull ache in my lower back and my bum and anus are so painful! Does anyone have any advice for me? I am currently on: Pentasa, Omeprezole, sodium picosulfate, citalopram and the contraceptive pill, my meds haven't really changed since I've been diagnosed but I just wondered if anyone could suggest my next move as I can't possibly wait until my next appointment in four weeks but my flare isn't bad enough to go to A&E

Thanks for reading, sorry it's so long
Molly

 

[Scipio]

Hi Molly - Pentasa is a very mild medicine - the weakest of the IBD drugs, and some research has shown that it doesn't work any better on Crohn's than placebo. My guess is that you might need stronger medicine than Pentasa to get your disease back under control.

Are you under the care of a gastroenterologist? If not I strongly suggest you consult with one. A good GI, especially one with a focus on IBD, can recommend the therapy to get you feeling a lot better.

 

[Molly1997]

Thank you so much for your reply! I know Pentasa is only mild but I didn't know that about placebo ! Wow, I have a gastroenterologist, but my appointment is not for another four weeks, I don't think I can wait that long because of the sickness and pain I am suffering with in my lower back, buttocks and rectum!
It's not a proper flare like I've had in the past though, so I feel silly going to hospital.
Thank you soooo much for replying xx

 

[CeeCeeGo]

Hello Molly

I'm sorry to hear that you are so poorly.

I'm with Scopio. Pentasa is very mild and not particularly good for active disease.

For me, if you are throwing up a lot, you could be blocked and if it was me, I would be visiting A&E a sap just to get things checked out properly. You may need to have some extra fluids due to the diarrhoea & vomiting.

Also I agree that it sounds like you need to see someone who is an IBD specialist.

This forum is great if you need someone to listen or ask a question. There is always someone around.

Take care and look after yourself.

Carol

 

[Molly1997]

Thank you so much feels good to know that there are people I can talk to! I've only recently joined this group today, but shall be using it more.. It's so nice to talk to people who understand.

Thank you for your help carol! Love Molly x

 

[eleanor_rigby]

Hi Molly, just wondering where you say you have been in remission for 6 months, what tests you had that told you you were in remission despite your symptoms?

 

[ronroush7]

I agree with all of the above.

 

[EmbraceJoy]

I hope you feel better soon! I hear you about "a proper" flare. I was in the ER a week ago. It's a funky disease when the question is "is this enough blood in my stool to go to the ER?" vs. "OMG, there is blood in my stool, I have to go to the ER."

 

[Molly1997]

I had a colonoscopy Eleanor_rigby, they said that there was no sign of active disease.. I've always had slightly raised inflammation levels every time I've had my blood taken though.
And thank you for the support guys! I went to hospital last night, they topped my fluids up, took blood and gave me pain relief and antisickness. I was able to get a bit of sleep because it was the first time I hadn't been in pain for 2 days nearly.
They said I have inflammation however they didn't want to give me steroids in case I had a sickness bug as well! Back in tomorrow and they're going to sort me out (finally!)
Wouldn't have gone if it wasn't for everyone's support on this thread and reading other threads which are similar!

You're all amazing

 

[CeeCeeGo]

Hi Molly
So are you amazing!
Glad to see that you went and I imagine that they are checking that you don't have a bug causing your sickness & diarrhoea before they give you steroids (which can suppress your immune system). Tomorrow should get you back on track.
Take care and keep us posted.
xx