Crohns / ulcerative colitis sufferers

[Thekwango]

Prednisolone messes with my head, gives me atrocious mood swings, crushing depression & very short tempered, i dread having to take them when ever i have a flare up, some times i think the meds are worse than the UC.

Pred tends to have the opposite effect - leaves me high as a kite! Currently half way through a week long course for a flare up and it's great! Though the 2x500mg of co-codamol I'm taking every 6hrs might be partly to blame!

 

[dowie]

here is another promising treatment with good results from the trials so far - apparently better than existing biologics, fewer side effects and given in tablet form rather than via injection:

https://www.hemacare.com/blog/a-novel-antisense-therapy-crohns-disease/


so fingers crossed even if the vaccine/potential cure doesn't work out the potential treatment options seem to be improving

 

[matt_fsr]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

Reason I ask is I've been suffering for the last 2+ years from unknown lower abdominal disorder of some kind, ranging from pains, to severe constipation, tiredness, lethargy, depression etc - I've had a whole load of tests done, but nothing has come back with any actual diagnosis.

Which in itself can lead into a vicious circle of depression of not knowing what's wrong, and therefore having no treatment. December and January were a lot better, but the last couple of weeks seem to have gone backwards.

 

[DanTheMan]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

Reason I ask is I've been suffering for the last 2+ years from unknown lower abdominal disorder of some kind, ranging from pains, to severe constipation, tiredness, lethargy, depression etc - I've had a whole load of tests done, but nothing has come back with any actual diagnosis.

Which in itself can lead into a vicious circle of depression of not knowing what's wrong, and therefore having no treatment. December and January were a lot better, but the last couple of weeks seem to have gone backwards.

Mine was confirmed with a colonoscopy, however the sheer amount of blood I was losing each time I went to the toilet kind of pointed in that direction pretty swiftly.

 

[Pigeon_Killer]

One of my best mates at Uni went through hell with Crohn's and never got over it. Died a few years ago in his early 30's from cancer which was attributed to his Crohn's.

Hope they find a cure for anyone that suffers from it.

 

[Selekt0r]

As suggested by DanTheMan, if you have severe ulceration of the intestines then other tests may be indiciative (low Iron levels in the blood, blood in stool sample), however a colonoscopy is (sadly) pretty much the only way to properly diagnose Crohn's / UC and to monitor its progression or remission.

 

[ColdAsIce]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

Reason I ask is I've been suffering for the last 2+ years from unknown lower abdominal disorder of some kind, ranging from pains, to severe constipation, tiredness, lethargy, depression etc - I've had a whole load of tests done, but nothing has come back with any actual diagnosis.

Which in itself can lead into a vicious circle of depression of not knowing what's wrong, and therefore having no treatment. December and January were a lot better, but the last couple of weeks seem to have gone backwards.

Don't give your GP any rest bite until you get a diagnosis. Have you gone for a colonoscopy etc yet?

 

[dirtychinchilla]

Mine was a colonoscopy, and they take a biopsy too. That confirmed it for me.

 

[matt_fsr]

Don't give your GP any rest bite until you get a diagnosis. Have you gone for a colonoscopy etc yet?

Cheers fellas, I've long since given up on GP, I've had a private consultant appointment, and NHS consultant appointments, and I've got a 'new' consultant booked in for April, but I'm not hopeful.

I've had a colonoscopy, as well as a CT scan, but nothing was found. (Obviously looking primarily for cancer etc)

Thankfully it's not a 'life-spoiling' condition, but it certainly has effects and knock-on effects, and probably the frustration of it more than anything, as well as not really knowing how best to tackle it, if it's gone, if it's recurring or what - just gets me down after a while.

 

[ColdAsIce]

Cheers fellas, I've long since given up on GP, I've had a private consultant appointment, and NHS consultant appointments, and I've got a 'new' consultant booked in for April, but I'm not hopeful.

I've had a colonoscopy, as well as a CT scan, but nothing was found. (Obviously looking primarily for cancer etc)

Thankfully it's not a 'life-spoiling' condition, but it certainly has effects and knock-on effects, and probably the frustration of it more than anything, as well as not really knowing how best to tackle it, if it's gone, if it's recurring or what - just gets me down after a while.

I remember a time before I was diagnosed, describing much of what you have above. Along with rapid loss of weight, constant pain, fatigue, sickness etc. Doing my best to go to work everyday. So exhausted after work I would sleep when I got home at 5:30pm, pretty much all the way through to the next morning to repeat it all again.

The useless GP didn't have a clue, thankfully someone at the Hospital suspected it could be Crohns and got me a bunch of tests that would confirm it. It was extremely hard not knowing what the hell it was. It definitely gives you some mental rest when you at least get a diagnosis.

 

[Maccapacca]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

For me the NHS was next to useless, it's probably piles they said until I was so fed up I asked to be referred to BUPA which luckily we had and in two days they CT, blood test and a colonoscopy with biopsies which confirmed UC then straight onto a pharmaceutical solution.

Since then I tend to boss them around and tell them what I want.

I am seeing a nutritionist tomorrow, my aim is to get off these 'orrid drugs. If that's possible? I don't know? but I'm too young to be taking a drug with a half life

 

[mattyg]

I was told piles too. So 2 years of trying every piles treatment going. Including shoving a garlic clove up there...Actually that one stopped some of the issues for a while. Although my breath stank.....lol

Eventually saw another GP who had to to a rectal exam straight after I'd been to the loo. Couldn't wait whilst at the Dr's. He suggested an "oscopy" Within a second of the camera going in the Specialist said Ooh that looks nasty. And UC with possible Crohns. Luckily "only" UC.

 

[dowie]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

Reason I ask is I've been suffering for the last 2+ years from unknown lower abdominal disorder of some kind, ranging from pains, to severe constipation, tiredness, lethargy, depression etc - I've had a whole load of tests done, but nothing has come back with any actual diagnosis.

Which in itself can lead into a vicious circle of depression of not knowing what's wrong, and therefore having no treatment. December and January were a lot better, but the last couple of weeks seem to have gone backwards.

biopsies during a colonoscopy then MRI

has a few issues with abdominal pain, vomiting etc.. over the past few years just passed them off as sickness. Noticed I would start to get severe abdominal pain after drinking. Went to a GP and was diagnosed with gastritis, put on PPIs, then later more abdominal pain on the PPIs - GP referred me for an endoscopy, fortunately I had insurance so got it done quickly and the gastro consultant suggested an endoscopy with ultrasound rather than normal endoscopy... glad he did that as it picked up gallstones... had surgery to have gallbladder removed. that removed the source of some of my abdominal pain at least... no more waking up in extreme pain at 3am after eating something high in fat.

Still more abdominal pain... went back to GP practice again, different GP this time who gave a diagnosis of 'IBS'... was a suspect GP, didn't seem to speak English as a first language nor was very good at listening and for all I know could have some mickey mouse degree from overseas - so not accepting the 'IBS' diagnosis from the possible 3rd world 'doctor' I booked another appointment at reception the same day to see another GP. Fortunately I got a British trained junior doctor who was keen to order blood tests and refer me back to the gastro... blood tests showed high CRP, low iron, low vit D. Gastro decided to do an endoscopy and colonoscopy, all seemed clear visually but biopsies showed signs of crohns. Started me on pentasa... was still getting pain and it was getting worse - gastro consultant referred me to a crohn's specialist - crohn's specialist said the bloods didn't match the findings of the colonoscopy and ordered an MRI.... finally, with the MRI, it was clear that there was inflammation in the small bowl, crohn's consultant said I'd probably had it for a few years now and will likely need an operation at some point to remove a section.

 

[dowie]

I am seeing a nutritionist tomorrow, my aim is to get off these 'orrid drugs. If that's possible? I don't know? but I'm too young to be taking a drug with a half life

I wouldn't unless your consultant OKs it

FYI anyone can call themselves a nutritionist, it doesn't require any qualifications and isn't a regulated profession. If you want to see a legit professional for guidance on diet etc.. then you need a dietitian.

 

[Maccapacca]

I think we are talking about the same thing she's fully qualified and well recommended

 

[chipperhead]

Mine was going to the toilet 20 plus times a day with about 10 seconds warning, obviously many times this didn't give me enough time to make it. Severe stomach pains, weight loss, feeling horrendous, unable to work and no energy. I didn't really lose much blood though.
A colonoscopy and biopsy showed my large intestine was completely inflamed and ulcerated and a confirmation of UC.

A colonoscopy is the gold standard test.

 

[VoG]

Guys... those of you with confirmed UC or Crohns, can I ask what the 'determining' factor was in your actual diagnosis of this?

i.e. Was it from blood test results, or from a colonoscopy or what?

Reason I ask is I've been suffering for the last 2+ years from unknown lower abdominal disorder of some kind, ranging from pains, to severe constipation, tiredness, lethargy, depression etc - I've had a whole load of tests done, but nothing has come back with any actual diagnosis.

Which in itself can lead into a vicious circle of depression of not knowing what's wrong, and therefore having no treatment. December and January were a lot better, but the last couple of weeks seem to have gone backwards.

Colonoscopy with multiple biopsies which was done due to rapid weight loss ( 3 & a half stone in 5 weeks ), anemia because i was passing substantial amounts of blood when ever i went to the bog, going to the bog upto 15 times a day, constant abdominal pain, extreme fatigue etc, luckily i had a super keen young GP at the time & he wasted no time in coming to the conclusion i needed to see a specialist asap.

 

[Holdon Tight]

Uc sufferer here. Having a bad flare up at the moment.

 

[Thekwango]

Uc sufferer here. Having a bad flare up at the moment.

Sorry to hear mate. I'm just coming out of one, thank Christ. Last week was a long one!

 

[MOOGLEYS]

I was doing well with my O/C but just had a dose of the Flu and a chest infection so was put on Antibiotics which has played havoc with my U/C I have a have passed blood today so back on the Azathiroprene and will see the docs if it does not clear up.

The joys and I'm still not really over the flu yet....