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First flare after diagnosis?

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Crohn's Disease
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Posted 10/23/2017 7:12 PM (GMT 0)
Hi guys,

I feel kind of stupid for asking, but i am a bit worried so i am going to anyway.

For the past six months my Crohn’s has been pretty much under control. I guess I am one of the lucky ones, because my life basically went back to normal and I feel very blessed for that.

However, over the past few weeks i have started to notice a dull ache in my lower right abdomen. It does not have me cringing in pain like before so i was not immediately worried. It kind of feels like something rubbing against a sore, only on the inside of my body. Anyhow it is new to me. In the past two weeks I have noticed that it has become more persistent, often making me change my seating position at work or even adjusting the way i am laying in my bed.

Could this mean that i am starting to flare? Even though I do not feel particularly tired or otherwise ill? My stools (sorry guys) have been pretty solid but they too seem to get a bit more loose and sometimes the explosive D is back as well, although not super often (thankfully).
Since I have been doing so well I am a bit reluctant to go back to my doc. Not so keen on new tests etc. I thought I check here first (it is not an emergency or anything) since i realised i have absolutely no clue as to how a flare would present itself.

Any thoughts or advice would be greatly appreciated!
Posted 10/23/2017 10:15 PM (GMT 0)
It would be best to see your doctor now. If it is a flare you don't want to wait until it gets worse because it will be harder to control and go back to normal. It's really hard to say but It kind of sounds like pain I had with a stricture and that can form during healing so it wouldn't be completely unheard of to develop that at this point. When I developed the structure and was having a flare last year I had very few symptoms to begin with and then suddenly I was in excruciating pain and couldn't stop vomiting. I never saw it coming. If you have any warning signs it's better to look into it then to wait.
Posted 10/23/2017 11:03 PM (GMT 0)
This sounds a lot like the beginning of a flare, which could mean that your maintenance meds aren't strong enough. What are you on?
Posted 10/24/2017 6:30 AM (GMT 0)
Hi and thank you for the replies!

@labradorite: good to know that this might be a possibility. Sounds like something I would definitely want to avoid. Sorry you had to go through that!

@scifigal: I am currently taking 10mg of Thiosix (thioguanine) daily as a maintenance med.
Posted 10/24/2017 12:45 PM (GMT 0)
Is there any reason why they prescribed this instead of a Crohn's drug? The one you're on is for leukemia, and I've never heard of it being used for Crohn's. A quick Google search shows it's similar to Imuran/azathioprine/6mp, which isn't very effective for Crohn's.
Posted 10/24/2017 9:03 PM (GMT 0)
Hi scifigal,

A little history here: when i was diagnosed I was first prescribed prednisone, starting at 80mg. I tapered gradually (was on it for 10 months). I did not get the 5 asa drugs because my Crohn’s is limited to the small intestine. I was put on 6MP for maintenance but developed very severe side effects (pancreatitis, liver problems, bone marrow suppression). Before putting me on remicade, my doc decided to try Thiosix first. It has the same workings as 6MP/AZA (both also originally developed for the treatment of leukemia and such) but it is the ‘pure’ form in the sense it has a limited amount of side effects.

In the Netherlands, where I am from, the drug is only offered to people that cannot deal with 6MP and AZA because of side effects. That is also the only way it is covered by insurance for use in IBD. Since starting this drug my bloodlevels have normalised and I have been feeling great so it seemed to be working just fine for me.

By the way I did not know that the 6MP and related drugs were not beneficial to Crohn’s patients. I thought this was an established category within Crohn’s medication?
Posted 10/24/2017 9:17 PM (GMT 0)
It's kind of an established category, yes, but most doctors are now using a "top-down" approach where you start with the biologics, which are MUCH more effective and work a lot more quickly. In fact, for Crohn's, the 5-ASAs are really no more effective than a placebo. I'm sorry about the pancreatitis - I had that with imuran as well. I don't think that the Thiosix is working for you at all. What you're describing is a similar trend that I had, but I ignored it and ended up with abscesses and a fistula. I've been on Remicade for over 5 years now, and it's been like night and day in the quality of life for me.
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