Tell me about Crohn's disease

[comeherepetal]

Some results have come back to say I have an inflammation somewhere which is possibly chrones or ulcerative colitis

I have to do a sample for further testing and see a specialist.

I am really scared and just wondered if anyone could give me any incite or information.

Basically I have been bleeding for months and months, it's bloody and mucusy. I also have to rush to the loo 4 or 5 times a day.

I had a camera up my bottom and they couldn't see far up because it was very mucusy and I was quite distressed so kept asking them to take it out. They saw some small piles and took samples. Suppositories were prescribed and this got rid of the bleeding and things were normal again. Upon stopping taking them it returned.

The samples show that it could be Crohn's disease or ulcerative colitis. But I need further tests. Could it be anything else?

Sorry for the rambling - I am just a bit upset and was hoping for some advice.

Hi it does sound like IBD so either Chrons or colitis, I would keep taking the suppositories at present if that's all you have been given. When have you got a follow up? I presume they would want to repeat the endoscopy was it a flexi sigmoidoscopy or a colonoscopy?
Have they done stool testing on you specifically faecal calprotectin?

DH was diagnosed with Crohns 6 years ago. Don’t google it as there is some scary stuff out there.

He had a short course of steroids and then went onto an immunosuppressant that effected his hip so he changed to another. Now he get tiredness, occasional stomach bloating and pain. He finds drinking lots of liquid, limiting alcohol and getting enough sleep important.

If you smoke than giving it up will make a huge difference.

Unlike when I was first diagnosed in 1994 there is now an ever expanding range of treatments available. The chances of your consultant finding something that works for you is pretty high.

Crohns is not linear, there are good and bad days, good and bad years. After a few very tough years recently I am now healthier than I have ever been as an adult so please don’t think of a diagnosis as a life sentence.

If it's Crohn's you might be interested to read up on bark powders. (A woman went public having cured herself with them.)

It could be proctitis if it's low down, or perhaps leftsided. But the symptoms do sound likely to be one or the other. I found joining a support group useful, there are some on facebook as well as other sites.

Op, There’s really good information on www.crohnsandcolitis.org.uk.

I have had Crohn's for 35 years.

As far as people possible, look after yourself with food and a lifestyle that work well for you.

Join Crohn's and Colitis UK.

Crohn's is an inflammatory bowel disease (IBD). People confuse this with irritable bowel syndrome (IBS) and then tell you what has 'cured' their postman's neighbour's aunt etc.

I would advise you give bark a miss and stick with your hospital consultant's advice. Attend all investigations and check ups, even when you're well. Press for good maintenance treatments. As far as possible, aim to avoid surgical operations as they and can bring about new problems.

You can have a perfectly lovely life despite having Crohn's. Don't let it define you.

Wishing you well.

Crohns can affect anywhere from mouth to anus, colitis is only in the large bowel. Your consultant will need to assess the extent of the inflammation- - colonoscopy would have helped with this. Are they re-scheduling this? Unfortunately it's an unpleasant necessity for us with IBD .
There are lots of different types of treatment, although no cure (yet).

Crohn's and colitis are very manageable once you get on the right regime for you. I was diagnosed a long time ago and have managed to hold down a full time job, do a PhD etc. It took a while to learn the management of the disease and to get the right drug regimen (no bloody bark) but at the moment I'm very good.

The endoscopy should not hurt; you can have sedation if needed. Good luck, OP. There's a fair bit of support out there so make sure you push for it.

I’ve had Crohns since my early 20’s (now 50) but I didn’t need aggressive treatment until 7 years ago. I’ve since had surgery which has put me in remission for the past 3 years.

The understanding of the causes of IBD have changed so much in the past 20 years and the drugs for managing it are now better than ever. If you are diagnosed with Crohns ask your consultant & IBD nurse for the NACC leaflets on the drugs they recommend for you - they’re very helpful & don’t use medical jargon so they’re easy to read & understand. Don’t be afraid to tell your consultant if you’re not happy with the treatment or feel it’s not working - everyone is different & their disease reacts differently to drugs so it might take a while to find something that works. Surgery is very much a last resort these days (at least it is for my hospital). I found the Crohns & Colitis forum on FB really supportive when I was very ill - it’s a closed group which gives people a chance to ask questions & talk about their experiences.

Diet can help but again everyone is different & the food that upsets me won’t be the same for others. At the moment I can eat just about anything although certain foods do make my bowel very active so I try to avoid those if I need to be out & about the following day.

As the pp says there is always someone willing to tell you how they know someone who was cured by eating or drinking some random shit (ignoring the fact that IBD is incurable) & FB is full of what my doctor calls ‘snake oil peddlers’ - but they’re entertaining & sometimes we need a good laugh.

Please try not to worry too much & I hope you get the answers soon & start to feel better