michael in vermont said:
This is a very interesting post. I have had constipation all my life but I assumed it had nothing to do with my PSA which has also been all my life. What are the inflammatory symptoms of IBS/IBD,Jen?
Hi Michael, well that's a bit complicated. The guys over on the crohns forum have at least as hard a time getting diagnosed as we do!
Whilst I feel I am starting to tell my motility and inflammation issues apart personally, all of the symptoms from one could be due to the other, with the exception of a few. The golden rule is still the ones you will read on the websites; substantial fresh blood (more than just from piles), tarry black blood, or coffee ground looking material (all different levels of digestion), and significant (10%) unexplained weight loss over a relatively short period of time (ie less than a year).
Despite having both of these, my official diagnosis is still IBS, because the scope only showed "normal ulceration" of my small intestine - so you really need to take anything I am saying now with a large pinch of salt, and consider it personal experience. Anyone who is a bit sensitivite, the following is likely to be TOO MUCH INFORMATION so stop reading now.
Motility issues for me often cause gas, bloating, gurgling, and diarrhea (from here on let's just call it D). Sometimes The D alternates with constipation. Don't wake up in the middle of the night needing to go. No specific associated fatigue or temperatures.
Inflammation issues for me more often mean obvious in digested food (whether in D or apparently normal stool), mucousy stools, and odd little thin ones (I think the guys in the know call them pencil stools). D is often present, but doesn't need to be, and just as common is the feeling that I'm a bit constipated and even when I've been there's still a bit left to go. There is also an actual feeling of swelling in the lower abdomen - for the ladies out there it's similar to having period swelling, and is often accompanied by a mild throbbing back ache just like the one some of us get at that time of the month. A feeling of fullness after eating very little. Nausea. And on a bad day, dramatic lower left or right quadrant pain. Breathtaking stuff. Certainly caused me to become prednisone taking! And finally, extreme fatigue and night sweats, with the occasional urgent D waking me up in the middle of the night. (It seemed unlikely that the fatigue and night sweats was from PsA because it was largely under control thanks to Enbrel).
The blood and weight loss were the big alarm bells for me, as you might expect. But that's likely to one day end in a diagnosis of crohns, if Humira stops working for me. I think it's possible that its common for people with PsA to have milder gut inflammation, where you wouldn't expect drastic things like blood, but it still affects quality of life. Hence encouraging people to consider their medication mix if they have the option.
PS. Most people with IBD have real trouble controlling their weight. Whilst rapid weight loss is one of their criteria, it would appear one of tha main reasons they use this is to identify high-risk patients for investigation, rather than because it happens to most people with IBD. Spend some time on the forums and you'll see most battle with weight. As well as steroids (lots more than for us usually), the sheer inconsistency of the eating causes issues. One week I'm trying to eat as much as possible (persuading myself to eat more when im nauseous) of the highest calorie stuff my body will digest (goats cheese, crackers, white rice, fish, more cheese), and the next my guts absorbing everything and I haven't eaten a proper meal in months and maybe I'll try a bit of that cheesecake and doesn't that chocolate look nice.... You can imagine the result. So don't assume just because someone is not skinny they can't have IBD!