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Toilet Stuff (Sorry)

Hi, sorry to ask about such a disgusting and humiliating topic but I think it's important.

Whilst I've known that I display pretty much all of the symptoms of Crohn's, the one I have which I've never been able to find out about is the amount of time on the toilet...

I used to always go after dinner on a night and it would always take around an hour and a half, but when I first started experiencing the fatigue, pain etc. it began taking longer and longer every day, before having the uncontrollable urge after breakfast which had never happened before, and then that was taking longer too.


We all know how it is - bad days and better days, but this has never improved and to me is the worst symptom, as I no longer have a life. It's currently 6 hours a day. The urge wouldn't be so bad if it didn't take so long, or it wasn't literally every day.

Doctors have always said "constipation" but I don't see it as such. It's not that I can't go, it's just like slow moving traffic... And really, it never feels "complete". They ask about the consistency but it can be the full 1-7 scale during the same session. Laxatives don't help - I can feel them doing what they're designed to do, but that just isn't MY problem. It doesn't help the duration.

When I was finally hospitalised, it started to improve from day one. I wish I knew why or how but from being discharged 3 months later, it was an hour a night but then it started to get worse again, until here we are a year later and I'm writing this essay on the toilet.

Incidentally, the past few weeks it has felt difficult, like I'm just too dry. I haven't drank any less than usual. I have a bladder problem so I have to drink gallons every day. Anyway, that isn't the inherent problem, it's just recent.

I've driven myself insane thinking of potential causes. From handwashing to starting to use the dishwasher regularly for the first time, to storing my mushrooms at room temperature to most recently, around the time it all started, our house was refurbished, including a new toilet and I'm thinking the height might be just so subtly different as to have this effect.

Yes I know it's pathetic.

In hospital, I said I had this problem straight away. But I was abused including being accused of throwing up every time I went to the toilet. Emptying my bladder, defecating, brushing my fucking teeth - no, I must have been throwing my guys up 20-odd times a day, all because I was underweight. This is the tip of the iceberg of what else happened. Of all the wards for them to do this, a gastroenterology ward. Seriously?!

I asked a consultant about it - being underweight leading to abdominal muscle deterioration... But no, I've been underweight before for other reasons and this has never happened. Anyway my weight has been the same since December thanks to a year's experience.

Sorry to bring up this subject and for going on so long but I'm desperate for answers, and where better than others in my position?

This problem is my tipping point. I could bear to go for more years undiagnosed if I didn't have to deal with this. I have another gastroenterology appointment next Wednesday and if I'm no closer to any treatment, I'm giving up on my "life". I'm deteriorating every day and I'm not repeating the cycle of last year. I can't believe I could be treated that way as a hospital patient.

Anyone have a clue?

Thank you all so much for your time, know that it is massively appreciated.
 
I've had like everything done - MRI, CT, Ultrasound etc. But everything's all clear. I had cameras but I'm hoping it was maybe too early or they weren't performed during an active flare up? Also I don't think the endoscopies examined the entire GI system. I know I frequently get pains to the right of my belly button (I had considered an appendix problem, especially with a high fibre diet). The most recent scan I think was the CT which must have been around Feb-April last year which would have been when the problem was nearly at its worst that year.

From what I've read I think strictures are potentially what I'm feeling, but I'd gladly get checked again. I swear they must have missed something. It IS Sunderland hospital, after all. Half the time they apparently weren't expecting me...

I noticed the forum where consultants give their opinion. Sorry, I'm new but could it be worth asking there?

Thank you
 
I don't know anything about the consults. Diagnostics can be frustrating. I was fortunate enough to not have to wait long for a diagnoses, as I had visible stricturing in the TI. They were able to see that in a CT
 
I don't have a solution but sometimes I can spend a hour or two and I don't always feel like I completely empty myself.
 

Bufford

Well-known member
I never really ever feel empty and if I do its only temporary. It could be due to inflammation going on inside us that gives the feeling of incomplete emptying of the bowels.
 
Thank you all. I'm thinking that there may be scar tissue that has thickened the GI surface, causing a narrowing?

I'm going to this appointment armed with results, thoughts and questions. I'll certainly report back with anything that may be of value. :)
 
Hi,
When I flare I get proctitis - inflammation of the rectum. This results in feeling like I need to go a lot of the time, great urgency, and feeling like I haven't finished when I do go. In turn, this leads to me sitting on the loo for much longer than I should and contributing to getting piles issues.

I'm not sure if this anything like you are experiencing, but if it is I found prednisolone suppositories (NOT the enemas - they go up too far) brilliant and very fast effecting relief.
 
Thank you it's very similar, the only difference is that I haven't had piles yet, but I get fissures quite a lot. I'll look further into this.
 
You might also want to look into having a footstool in front of the toilet to put you into more of a squatting position. The squat position changes the shape of the bends at the end of the colon which makes passing stools easier.
There is lots of research suggesting that some bowel problems, and piles, have a much lower incidence in cultures where squatting to poo is the norm.
It's quite interesting to read about - we're probably one of the few groups of people that can find the mechanics of pooing interesting!!!
 

Bufford

Well-known member
I was able to stave off my colostomy surgery for years by taking pressure off of my rectal area by getting off from sitting down on the toilet. Sitting down on a western toilet put all kinds of pressure and strain on my spingster mussle ( don't know how to spell check that) so I'll just say my rear end, and that caused all kinds of grief and many abscesses that needed lancing and draining long before my diagnosis for Crohn's. I took to a standing position where I squat over the toilet, legs bent slightly at the knee and simply let gravity do the work instead of pushing.
Now that I am on the bag, I don't even need a toilet, and built an outside outhouse toilet. Its cleaner, no splatter from the toilet water, no odor in my house. I am uncomfortable having an indoor toilet together with my kitchen, so it has been a good solution to a long time problem.
 
Nitty - I've been wanting to try and hunt one down when I had the chance. Maybe yesterday or failing that, today. Crushed because my mornings have been so delayed really didn't have the time and energy to slot it in :/ next chance probably Monday and no matter what I'll be sure to get one. If I can find one.

Bufford - "sphincter"? I believe they're groups of ring-shaped muscles that control "flow" i.e. when to allow passage. We have loads of them throughout our bodies, apparently.

Sorry, just trying to show off :p
 
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