What is going on in my colon?

[Groobie]

Hi everyone
just wanted to introduce myself. I've had crohn's/colitis for 20+ years now. It's much more settled than it was, due to trial and error. I started with a crohn's diagnosis - botched up first time but I was persistent - then in the last five years or so this has changed to colitis due to local inflammation - mainly proctitis.
My mum was diagnosed with crohn's about 30-40 years ago, and her sister also ended up with it later in life. I started late teens/early twenties.
I've had different treatments, ranging from steroids to asacol. I mainly stick with the asacol now, tablet and enema form. Starting on fybogel too, due to some troublesome symptoms.
I'm on here as I've had grumbling pains for about 5 months which I can't diagnose. I feel like the doctors are just guessing and I think I've got a bit more insight than they think. I don't know whether any of my problems are due to scarring over time, or just getting older!
Since a had a bit of a tummy upset, I've had recurrent cramps and wind. Any wind passing through seems to cause pain. Now I'm having a flare up too. I saw my consultant today but ended up with his stand in, and I'm not feeling inspired. I'm starting fybogel to see if it calms things down. I think the narrowing of the colon has something to do with it. The doc says there isn't narrowing, but I don't see how you can consistently poo in long strips for years without it!! i beg to differ...

If anyone has had a bout of something similar, esp after long term chronic disease, I'd love to hear what you did about it....

Well that was a nice hello!!
:rof:

 

[Angrybird]

Hello and :welcome: to the forum.

When was the last time you had any tests done to check how things were inside? Where do you get the pain and is it like an ache or a sharp jab? Do you notice any improvement in symptoms depending on what you eat?

If you are having regular tummyache like pains that are getting worse and it has been a fair while since you have had any checks done then I think you should push to have things looked at to be on the safe side. Have any bloods even been done at all to check on inflammation levels?

AB
xx

 

[Groobie]

Hi Angrybird
Yes I have regular tests, I'm under consultant care. My inflammation levels have risen slightly. TBH they haven't always been the best indicator of what I feel like. The GPs I see are usually pretty varied in what they know - at best pretty useless. Having said that, I find the consultant care worringly misinformed sometimes!! You get a decent doctor then they're never there!

I get throbbing aches usually which come and go and are worse before and after going to the loo.
And backache at the mo. I suffer with sacroiliac and hip pain anyway which usually improves when I sleep. I woke up feeling stiff and achey this morning, so another indication that it's a flare up.
I think if things don't settle with the increase meds then I will be getting a little lookey with the camera. Not something I relish as I find the clear out before hand very unpleasant! Once I was so sore after using the stuff and being on the toilet for hours, I just cried. Ring of fire doesn't quite cover it!! I guess that's because of where my disease is.

Tell you what though, the nurses who think you should just be able to put up with internals without pain relief could do with a kick up the butt....!

thanks for the feedback
:ycool:

 

[SarahBear]

Welcome to the forum, Groobie!

I'm sorry you're having a rough time figuring out what is going on.

It's unpleasant, but scopes are probably your best option. The more you know about what is going on, the better it can be treated! When was your last colonoscopy?

I hope things go well for you! :hug: