Pb4

I'm not pb4, but can I answer as well? <_<.

Cheers :p

Don't worry, I'm not gonna be pushing surgery in this thread. To the contrary, I'm more likely to tell you to run for the hills while you still can.

Just a bit of background first. I was diagnosed in 2000, but I don't know what the extent of my disease was back then. All I can tell you is that my symptoms were extremely mild: diarrhoea 1-2x a day, no pain, urgency, blood or mucus. It was so mild, I didn't really believe I had Crohn's at all, tbh.

Things stayed like that for the next five years. Diarrhoea got a bit worse, but otherwise still no pain, blood etc. Then in 2005 I started getting the Fevers of Death™. Would get spiking fevers which would leave me shivering uncontrollably in front of a heater and beyond wiped out. I craved cold drinks. No cause was ever found. My iron was low. My blood results were wacky enough for me to get referred to a haematologist (who found nothing).

In 2007 I was at a different hospital and when I had a colonoscopy, they gave me the report this time. It said I had 'severe and extensive' Crohn's disease and there were ulcers throughout the entire colon and terminal ileum. Was put on Pred, but not much else changed. I was still having diarrhoea without blood or pain.

By 2008 I was having about 5 liquid BMs a day. I wasn't in deep pain yet, but there was postprandial discomfort after eating dinner, which went on for hours and hours.

2009-10, I was having 8-10BMs a day, interspersed with periods of constipation. I'm not sure if the constipation was down to narrowing, but I hated it even more than the diarrhoea. It also felt like my disease had shifted in some indefinable way, and whereas things used to stay stable for months or even years, now they were changing every few weeks. The only constant was feeling crap after eating, especially in the evenings.

In 2011, I had my first hospitalisation. Abdominal x-ray showed toxic megacolon. IV steroids kicked in. Sent home without surgery, but I was never right again since. Whenever I flared up after that, I would pass tiny amounts of stool frequently. And this time the pain would be unbearable. It was like my entire intestines were trying to emulate the chest-bursting scene in Alien. Sometimes my intestines would feel sore all over, like they were bruised. And the butt pain, oh dear god, the butt pain. It felt like a million minute glass shards had been embedded in my butthole and if I passed anything at all, it burned like sulphuric acid had been rubbed into the glass shards.

I also had occasional obstructions due to a stricture in the terminal ileum, but I won't describe those.

I honestly don't know why I was largely pain-free for 10 years and then in agony for most of the time thereafter (unless Pred was keeping a flare up at bay). But it did feel like I had deep inflammation and that's precisely what a pathology report of my excised colon showed: transmural inflammation extending through all the bowel layers.

I hope this post was of mild interest to you :p

NCOT that's interesting, thanks for sharing that!... sounds a like my scenario as well along with the tiny amounts of stool at times and such. I was about a year or two or more with very mild IBS like symptoms then wham... This deep inflammation or infection - and Pain.


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@Brt4545

I'm having trouble deciding to be honest. For sure no click yet, and I seem to be stuck in a state of pre-flare/flare, but not getting so far as to need the hospital or anything. I had no choice but to add Prednisone a week ago though at 40/mg daily as I couldn't take the pain during BM's anymore.

Here is what I have determined so far since being on this:

Probiotics now kill me... Any kind... (whereas before the treatment they didn't bother me at all). I'm quite sure now that consumption of these is was what threw me to needing pred. Eliminating probiotics get's rid of pain during BM's. Even while taking pred as well.

Anything wheat or gluten still get's to me after a certain amount - pain during BM's again.

My fistula issue seems to be 100% healed from it.

My tolerance to some foods has gone up - a lot actually.

For the first time while flaring, I actually have solid stool now and then.

So again, I think i'm more confused as some changes are substantial - but I'm still sick, that's for sure.

Ahh. Thanks I missed it.

To be honest I have never heard of Proctitis. Which is odd. Not even from my GI. After looking it up and reading about it I believe quite strongly this is what I have and is the cause of the excessive pain/straining/mucus/small bright red blood when things are bad etc. Also it makes sense when I take into account the complex fistula that developed. And the feeling of incomplete BM's/urgency etc.

It's this pain during a b/m that's always the first sign of a very severe impending flair for me. At it's worst it makes it hard to even function - let alone get off the toilet without having to run back in again a few seconds later and keep doing this until everything clears out. And it's always the first thing to start to clear up when I come out of a flare.

Thanks again, and I'm going to ask my GI specifically about this next time I see him. Maybe there's something I can take to tip the scales to less pain.

I have noticed a pattern over the last few years that a day or two on just home made chicken soup and grape juice with water reduces the pain by at least 50% or more. It's always been my go to.

I wonder if NCOT has this as well... seems like the same type/area of feelings.

Hi jc

It sounds exactly like it. I have only thrown up once or twice from the intensity - but many times call out in pain. It's not a normal pain for me like a say a sharp cut - it's more like a very far down, deep inside type thing. Very, very hard to describe. And it's not constant or always present. More so slightly uncomfortable throughout the day and intense just prior and during a BM.

If it helps any after a while on remicade and following scd diet the pain went away for some time, so I do hope you see some success soon - but only the two combined worked for me.

I think I'll talk to my GI about it and mention to him that from now on he should really discuss pain and pain location during bowel movements with his patients. I'm not sure why I never brought it up to him before. I guess I just assumed it was part of Chroh's-colitis.