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Curious to know what people’s thoughts were on which direction some of my symptoms lean towards. Of course not looking for a diagnosis.

I’m 29 years of age and have suffered with symptoms as far back as I can remember. It’s always just been something I self ‘managed’ and as I’ve gotten older the more I’ve just dealt with it. However recently I feel like it may not be something I’m ‘managing’ and just more something I’m living through.

The main reason that has brought me to the forum is due to the schedule in which bouts normally occur.

At its absolute worst, around 7 years ago, it lasted around 2 months maybe longer (all episodes were during the night without a night off, genuine hell on earth and had me questioning my existence). Mainly, I’ll maybe have a flare that will last around a couple of days to a week. Sometimes it’ll be an evening and then I can be weeks or up to a month without an episode.

The reason I think I’ve managed to live with it for so long is that although on the some occasions I can have diarrhoea through the day which does seem to come from a ‘trigger’, its primarily at night (without trigger foods as far as I can tell) so I’m not often caught off guard scrambling to find a toilet nearby for an episode. I think because I’ve got so good at unconsciously managing trigger foods, elevating the day episodes has put a spot light on the night episodes which my younger self just seen as all connected.

What an episode looks like.. I will go about my normal day, eating regular meals etc and then I will go to bed for the evening. Around 1 or 2 hours later I will wake with pain from bowel contractions, and between 1 minute to 5 minutes later I will need the toilet, I will have a couple of contractions on the toilet while some passes and then it’ll stop, no pain. I could sit on the toilet at this point for any amount of time after this and I won’t pass anymore. Until I return to bed and lie down, maybe another minute or 2 later, sometimes not even as long as that the contractions will start again and I’ll be back to the toilet to pass more. I can be back and forward to the toilet and bed say maybe 3 to 5 times on average before everything has passed. During the first trip it’ll be more firm although not formed by any means, and by the last trip it’ll be liquid consistency. The pain from the contractions can only be compared to what it feels like to labour a child without pain relief.

Does anyone else experience this? Having to lie down before your bowel will contract?? I know that nocturnal episodes can be linked to IBD but why can’t I just stay on the toilet and pass it all at once?

Reasons that put doubt in my head to seek diagnosis and just continue living with it and just extra information that may be helpful.
  • To my knowledge I have never passed a bloody stool nor blood on its own.
  • I have never lost weight from anything other than eating less and or regular exercise.
  • Other than during pregnancy none of my iron stores etc have ever been low or abnormal.
  • I do have episodes during the day that can be triggered by certain foods leaning more towards IBS however I’ve pretty much got this under control.
  • I have been blood tested for Celiac which was negative.
  • I am never constipated, ever.

Any thoughts would be appreciated, especially any experience with the whole lying down misery..

my little penguin

Staff member
What was you fecal caloprotectin?
Any imaging or scopes done ?
Ibs and ibd can have the same symptoms but only when you look at biopsies can you see the damage (ibd)
Bowels can spasm in ibd and ibs
There are meds that can stop spasming
Please see a Gi
They can test and treat for both
When was the last time you saw a GI Dr? Have you had scopes and have you done a calprotectin test? If so, what were the results? If you have never had scopes and are wondering if you could have an IBD such as Crohn's. Yes, you could. You could also have a variety of other GI issues that aren't IBD. As MLP the issue you have lying down can happen with IBD and/or IBS. Your symptoms definitely warrant a visit to the GI doctor.