How long can symptoms possibly last?! - Crohn's and Colit...

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How long can symptoms possibly last?!

32malewithcolitis
32malewithcolitis

Really fed up! I’ve not had a bad flare but it’s just been ongoing for like 5 months

It started off with just seeing mucus then a month later the discomfort started lower right (have pancolitis)

Calprotectin was 950 so suggestive of a flare. After treatment it’s now only 108 but I don’t feel any better despite it going down by 842. How is that possible? Mucus still there and discomfort - as I said it isn’t a sharp pain but it’s constant so it’s really getting me down and depressed. Pain was always lower right but has recently moved to upper right / more central and can be difficult to sleep on that side

Take 6 800mg octasa a day and that’s it now. Consultant said no more treatment is needed as the calprotectin is 108 which suggests there’s not much going on. She just suggests it’s ongoing mild inflammation that doesn’t need treatment

Surely I can have something?

Is it possible to almost be free of inflammation but still be experiencing this?

Just want to vent and talk to people who understand. I also feel bad as I know there’s people on here going through a really tough time so should be lucky in comparison so I’m sorry 😞

I’m back at work now and reopen tomorrow and just feel like crying all the time.

19 Replies
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Hi there. Been there... Have Crohn now fior many years. I experienced the same a few times. After some time it was clear that I also suffer from spastic colon.

And yes, that can be painfull to.

Sometimes your calpro van also be higher due to a bowel bacteria or even from painkillers like ibuprofen.

If not a spastic colon but a mild flair I medicate myself with cortisones. Start with a 40mg and slowly down to 5 mg.

Or what also might do the trick is a short high dosis of cortisones for a week .

I cannot agree with " there is not much going on". The Crohn or colitis is actually always there . A calpro higher than 40 suggests inflamation and needs to be taken care of !

And feel free to share !. Who are others to judge if your pain & disconfort is not worth talking about !

Take care

Question: on what medication are you ?. You take daily medication ?. Or Just only when it gets worse ?.

Micapathy
Micapathy in reply to Micapathy

Sorry I see now you take octasa.

I haven’t taken any ibuprofen for ages so I think it is colitis related with it being 950, then 108 after steroid treatment. But it obviously isn’t fully in remission yet still regardless of it only being 108

Just octasa for now yes

Have you previously been ok on Octasa ? I was changed from Asacol to Octasa and it didn't work for me so changed back to Asacol. Docs like Octasa because it's cheaper but cheap isn't always best ! Changing your regular meds may be something to consider.

I used to be on asacol too. Maybe that’s why? Never thought into that?

I think it is colitis but my mind keeps wandering to more serverE issues

Hello, I have personally found calprotectin tests to be limited. I have been diagnosed with moderate to severe crohns for just under 1 year. But before this I suffered for a few years as all my stool samples came back fine. I needed blood tests, scopes and MRI scans to see the true extent of what was happening. I think your consultant should pay more attention to your symptoms. I myself have only got use to what my symptoms mean and feel like, remember you will know your body best, be persistent with your consultant if needed. I would personally ask them to keep looking using other methods, or try additional medication. I am current taking ASA’s, Biologics and steroids. Steroids can have their draw backs, but they usually work quickly and could let you know if it is a flare that is IBD related. Hope this helps and hope you feel pain free soon. Thanks!

Calprotectin isn’t as sensitive in people with Crohn’s, especially small bowel Crohn’s. It is however pretty reliable for detecting UC flare ups.

Yeah agree with the small bowel. But I was first actually diagnosed UC after my scope. This was due to my whole large bowel being covered with ulcers. Calprotecin tests never pick this up for me personally. After an MRI and biopsies they advised me that it appears to be crohns.

Thank you for replying! I appreciate that: I have been worried it could be bowel cancer but I get health anxiety and can never help where my mind goes ☹️

How does steroids let u know whether u have IBD a not

Well I’m diagnosed with IBD already. But if steroids reduce the calprotectin then it shows that they have worked on treating inflammation which suggests it was caused by IBD as it wouldn’t reduce it for other issues

I am sorry you are feeling so fed up 32malewithcolitis. I also have Ulcerative Pancolitis and I can totally empathise with you. I experienced similar a while back and was certain that I was heading for a flare. My calprotectin was around a 100 and something, so IBD nurses & consultant said I’m not in an active flare. It did eventually calm down and I think you are right that it’s residual inflammation. The fact that you are producing mucous is another sign that your body is responding to inflammation.

Have you been on other meds other than Octasa? I’m on Aza, Allopurionol, Mesalazine (Octasa), Mesalazine (Salofalk) foam enemas and Omeprazole. This combination is keeping me very stable (for the time being) and been stable for just under a year (with the odd rocky patch thrown in). I was steroid dependent previously and the addition of Aza got me off of the devils tic tacs.

I’m sorry I can’t be of more help, but I do hope you feel better soon.

Hi there thanks for replying

I take 800mg octasa. My calprotectin was 900 and is now 108 after taking a months worth of clipper and also pentasa suppositories.

I thought about maybe asking about pred or azathioprine to get rid of the residual inflammation. Don’t know why they’re saying it’s not needed

How long did yours take to calm down if they said it wasn’t an active flare?

I’m sorry this is happening to you. I had a flare for 6 - 7 months and I never had Calprotectin tests but once I started Inflectra infusions and stayed on my special diet I was finally normal again! My colon looked rotten and 6 months later it was beautiful again. The only advice I can give you is to change your diet to The Specific Carbohydrate Diet starting with the intro diet for 2-3 days. I believe my diet and medication worked together to get me where I’m at today. I joined the FB group for support. It’s truly a miracle diet for many from God. I had hope but that means we have to do something. Take charge. Control the symptoms! Today, 1 year later, I haven’t had my infusion, but still on diet and so far everything is good.

That’s great news for you, so glad you got to the bottom of it. With diets I’m so clueless. I will google it and See what I can do. Thanks for the advice

Out of interest how did you know it was a flare. Did they just go off your symptoms and start to treat it?

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