Crohn’s disease

[ElephantsandTigers]

Purely by luck today I have found out I have this. I’m seeing the doctor next week to talk about it but I was hoping fellow sufferers could give me some pointers now about what it means and what I need to do.

I have a closely related disease called ulcerative colitis. Here's a crohn's related forum where you can get a lot more specific information:

www.healingwell.com/community/default.aspx?f=17

The basic rundown is here:

www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304

Stock up on loo paper.

You're actually lucky. There are treatments now that didn't exist a few years ago that are much more effective than the old ones. Look up Entyvio and Humira, for example.

Have you had a colonoscopy yet? How did you find out you have crohn's?

Major UK charity here
www.crohnsandcolitis.org.uk
Lots of useful information. Sorry I don't know how to make it a link!

So it linked automatically. Didn't know it did that!

I had a colonoscopy months ago and lately had a bile salts malfunction test. I rang the hospital for the results, the secretary told me I didn’t hav3 BSM, I picked up the report from the doctors and discovered I had Crohn’s disease then. No one has ever said it was a possibility or I was being tested for it. I was a bit upset and shocked tbh. I’ve been having tests for two years and all have come back fine/negative for problems

Thank you for the link. I looked on the nhs site but couldn’t get any info. I need easy to understand stuff. I’m suffering with difficulties at the moment which imparts my ability to read and retain info.

I need easy to understand stuff. I’m suffering with difficulties at the moment which imparts my ability to read and retain info

Was the Mayo Clinic link I posted any help?

I’m going to look now. I had to go out to an appointment early so haven’t had chance yet. Thank you.

MissConductUK - it did help very much, thank you. Not so happy about potential life-threatening complications but I’m going to stay positive and see my GP next week.

ElephantsandTigers

Thank you for the promotion to honorary Brit - if you look again the last two letters in my handle are US, indicating my colonial origins.

I'm glad you found it helpful. It's quite manageable in most cases, particularly with the newer medications. Ask your GP to refer you to a gastroenterologist, as most GP's won't have a clue about the disease.

Sorry to hear about your shock diagnosis. I have had Crohn’s for 35 yrs. There are good times and less good times. Even when the condition is not in a flare, you should have regular gastroenterologist appointments. This will help enormously when the Crohn’s flares up.

The pp who said GPs don’t necessarily know enough about Crohn’s is correct. When I first became pregnant, my GP said to stop all maintenance medicines immediately.

Just by chance I had a routine gastro appointment a week later. The gastroenterologist went mad and said to immediately reinstate the maintenance drugs.

And next time I saw my GP she told me she’d had a letter from the gastro ‘ticking her off’ for poor advice.

Don’t worry about anything. Crohn’s is not lovely, but you will manage it. Good luck.

Oops, sorry MissConductUS

I’ve got a feeling the doctor I saw two weeks was a gastroenterologist. He didn’t examine me even though he told my GP he did. He filled in questions about me himself getting at least one wrong and said he wouldn’t make me another appointment and if one test came back negative (it did) I probably have IBS.

The GP I am seeing is lovely and very productive. It’s down to her that I even got to hospital to have the numerous tests I’ve had and she’s also helped massively with my mental health recovery.

I don’t understand why no one has ever said I was being tested for Crohn’s and how it can be okay for a secretary to pass on half a message and I pick up a diagnosis note and no follow up. If I hadn’t decided to check in with the surgery I wouldn’t know I had it.

Stick with your GP then as much as you can. Hopefully she's aware of your dx as well by now.

I can talk to you extensively about the failings of healthcare in the US, but think it's better not to address how the NHS treats patients.

I’ve had some excellent care with the nhs and some terrible. On one hand medics saved my child’s life then five minutes later did something to me that meant I needed more surgery and later nearly died along with my subsequent baby. Others have been unfailing in their care and going above and beyond and some who couldn’t give a shit. It really shouldn’t be the luck of the draw.

My mum aged 70 has had crohns since she was 14. She mainly had difficulties in her younger years when treatments weren’t as good as they are now. Be prepared to try different things - some things work for some and not others. Lots of people swear by immunosuppressive drugs but they don’t agree with my mum. She manages by taking daily steroids (predisnole) and takes more if she has a flare up. By doing this she has managed to stay out of hospital for the last 20 years! She also finds eating a low fibre diet helps and she says sweet corn is the devil! Good luck x

(I should also add in her younger years she was in and out of hospital having numerous surgeries and has literally half of her bowel now, this probably wouldn’t have happened to someone diagnosed nowadays in the same way).

Sorry to hear about your diagnosis - it must have been a shock. I’ve had Crohn’s for 20 years (am now mid-30’s). As others have said, it’s a very up-and-down condition: you can be well for years with the right medication, then suddenly have a flare-up. It’s hard to give general advice as it affects people so differently - some live completely normal lives while others may need surgery etc.

There are lots of different medications available now, so hopefully you will find one that works for you. I am currently on something called Humira, which I have to inject every two weeks. I was initially scared at having to inject but it’s worked wonders and I’m feeling really well.

Best of luck with everything - feel free to PM me if you want more info about life with crohn’s!

DH has had Crohn's for 15 years, it took a while to diagnose because he thought he had a few bouts of food poisoning, which he self managed with fluids, yakults and acidophilus supplements. He has been pretty symptom free and off medication for years and the probiotics, lots of oily fish and fish oil supplements ( there is proper research evidence for this, it's not just woooo)seem to be keeping it at bay.
I'm in no way saying to avoid medication (I'm a doctor myself) but perhaps worth adding diet and supplements into the mix.

I'm in no way saying to avoid medication (I'm a doctor myself) but perhaps worth adding diet and supplements into the mix.

Hear, hear. I'm now in full remission in Entyvio, but I found that supplements with well documented anti inflammatory effects were very helpful in managing my ulcerative colitis, particularly extracts of green tea and pomegranate.

The problem with the supplements is that they don't do anything to slow or mitigate the immune system attack on the colon that causes the inflammatory response in the first place. In my case, fortunately, Entyvio has done that. It's also highly GI tract specific, so there is no systemic immune system suppression (I'm a nurse practitioner). They can still be quite helpful and may have ancillary health benefits as well.

cathyandclare Is prednisone really used for long term management of crohn's in the UK, despite the long term side effects? If so, at what dosages?

@Bookworm I'm glad you're doing so well on Humira. I was on it for several months and only saw a modest benefit, then it failed me completely. I'm doing much better on Entyvio. My IBD specialist told me that he generally prefers to start with Entyvio because it's possible to give a much larger dose by infusion and for some patients TNF (the target for Humira) is just one factor among several that can cause IBD. If you ever feel that Humira isn't still effective for you don't be shy about trying other options. I'm really thankful to be on Entyvio now.

I don’t think steroids are used long term, only for acute management to get inflammation under control. Good to hear the treatment is working for you

@MissConductUS that’s really interesting - thanks. I’m glad you’ve found a medication that works for you.

Stupid question alert - is there any food relevance to CD? I was tested for celiac disease and was told I didn’t have it but may have an intolerance. No difference I could tell when eating gluten free. I’m also wondering if it’s been caused by outside issues and remembering the random month where I was sick every Wednesday for a month. It all seems to have started when I had a life event that was very traumatic.

I think I’m going to need bullet points and a shopping list.

Stupid question alert - is there any food relevance to CD?

In terms of medical evidence and what we know about the etiology of the disease, no. There are some people who swear that they do better by eliminating certain foods, but back in Victorian days lots of people swore that hanging a dead mole around their necks cured a toothache.

Something causes your immune system to think that the lining of your gastrointestinal track is foreign, or infected and needs to be attacked. Another explanation is that there really was a pathogen there at some point, your immune system dealt with it but the mechanism to stop the immune system reaction failed.

It's perfectly natural to try to connect a disease like this to what you eat, but there's really no causal link.

Thank you. I just wish I knew why I have this. I like to know why things happen. It can be annoying.

You're welcome, and I understand fully. There is no family history of UC for me and no known risk factors. I've had the bloody disease for 14 years and it is really annoying to not know why.