Crohn's Disease

[Mark182]

I know this is not a medical forum but I am not a member of one and seen some quite diverse topics here…

Long story short, I have been in a lot of pain the last 5 weeks. Had numerous tests ect and turns out its very likely I have Crohn's Disease, to be confirmed once I have an endoscopy. My main are symptoms are –

 

abdominal pain mainly lower right side

 

burning pain in lower abdomen

 

extreme tiredness

 

unintended weight loss (due to lack of lack of appetite)

 

blood in stools (not always)

 

I put the blood down to a lot of cycling I do, but in the last 5 weeks it’s hit me for 6. I’ve barley been able to function and had to drag myself to ride my bike or play football (has made me even more tired) I’ve never usually suffered from anything like this in my life. Some family members have IBS. When I saw the stats of around 3 in 20 people have some form of it and it mainly occurs from the ages of 18 – 30 (I am 28). I guess this leads me to why I am posting here, just wondered if anyone else has it or any advice?! I don’t smoke and even drink, haven’t had one for 5 / 6 years, just grew out of it having kids ect. I know triggers such as stress can trigger it. I don’t think I am stressed more than usual. In fact me and my missus have just planned to get married next year and been having lots of fun planning it after saving up what feels like forever.

[VeryPC_Colin_M]

Congratulations on the coming wedding mate!!!!! Sorry to hear the rest. My advice is don't even sweat it until you've had the endoscopy. My mum has chrones and had lots of her insides removed but is always happy and able to enjoy life. I've inherited IBS but its only mild and just keeps me skinny really. So keep your chin up and stay positive - ps 20.....

[elsiegee40]

My best friend has Crohn's diagnosed when she was 17. She's 51 now and her kids the same age as mine. Unfortunately Crohn's is one of the hidden disabilities. People just don't realise the problems sufferers can have. I don't think I fully understand how it affects her and I have known her for decades.

 

There is dietary adjustment to be made. You should get advice on this. I know also that there is online community support because my friend is part of it. I will contact her for some links.

 

It is possible to live with it. It's not the end of your normal life even though it probably feels like it at the moment.

[witch]

It can just happen you know - it isn't always caused by anything. Or it can be genetic or caused by a previous infection

The good news is that once it is under control you can live a normal life, within reason. I know two people who have it and although they do have the occasional flare-up, and they have to avoid certain foods, they are absolutely fine.

One had a portion of bowel removed, the other didn't as they managed to control the inflammation.

 

The thing to do is focus on getting the treatment right - enjoy your wedding planning too - I really don't think that is going to cause a problem

[elsiegee40]

Main Crohn's & Colitis site http://www.crohnsandcolitis.org.uk/

 

FB groups/pages https://www.facebook.com/groups/60217780766/?fref=ts

 

FB forum which is totally private and can only be seen by members of the group https://www.facebook.com/groups/CCUKforum/?fref=ts

 

My friend says she gets a bit cheesed off with the FB private forum as they are all a bit woe is me and consider one bad day a 'flare up' so she doesn't frequent too often, but as a newbie you might find it helpful.

 

She found the main NACC (now Crohn's & Colitis site) really helpful when she was first diagnosed.

[Mark182]

Thanks for all the advice and links. I have pretty much accepted it and just looking for ways to manage it. I will know more once I have had more tests. I am just happy to have something to go off as in the last 5 weeks I’ve been quite ill and not a clue what’s been wrong.

[elsiegee40]

Now that you have been diagnosed it at least means there is a way forward... and it can make you very poorly indeed, so the period before diagnosis must be dire. My friend had to have surgery just over 3 months before she got married and the day went off well. Hopefully your Crohn's will turn out to be less severe than hers. Good luck

[Oaktech]

Ask to be referred to a dietician and get their help to sort out your diet. You'll probably find that you will be able to largely manage your symptoms with diet

 

I have several friends who have varying severity crohns and they have pretty much normal lives for the most part because they are strict with their diet.

 

As a general rule, fatty foods are out, very spicy foods are out, too much fibre is out and lots of protein is often not ideal. It is also advisable to avoid acidic food and drinks too.

 

Bland protein like chicken can be handy as it tends to help get everything back on an even keel after a flare up.

 

You may find you have specific food triggers too, one of my friends it's white onion or onion powder and he has to avoid it altogether.

 

Best of luck working out what helps you.

Edited June 18, 2015 by Oaktech

[sonofsanta]

My daughter was diagnosed with it at 9 years old. Pretty rough to see a 9 year old girl being told she has an incurable disease

 

Happily, though, the only hospital visits we've ever had were the original endoscopies and then her regular appointments; we've never had anything bad enough to hospitalise her. After the initial round of steroids (and six weeks of nothing but protein shakes, I don't know how she managed, bravest person I know) the medication has controlled it and she carries on normally. Might be a bit more of a challenge once she gets to drinking age and can't drink like her friends, thanks to the medication, but that's a problem for the future; in the here and now, we're very lucky.

 

The only certain trigger we've ever identified was stress, and the correlation there is very strong. Food-wise, though, we've gone through all sorts of combinations, and none of it has ever made a difference. You hear stories of all sorts though--some people realising that compounds in certain paints set them off.

 

+1 for Crohn's and Colitis UK, we're also big supporters of CICRA because they're a research charity, headed by my daughter's doctor. They're a smaller charity as well, so the money they get is used more efficiently--no paid staff etc.

 

It is surprising how many people have Crohn's, but because of the nature of it no-one likes to talk about it. Everyone is probably within one jump (i.e. friend's sister, colleagues partner) of a dozen people with it without realising. The tide is starting to turn though, I think--there are more high profile sufferers, more people willing to talk about it.

 

As far as I know, they still don't know what causes it--could be genetic, could be environmental, could be a virus (as an auto-immune disease, the latter would fit). I get the feeling that research & care is much, much better now than it was even twenty years ago though.

 

It's a really crappy thing to be diagnosed with (pun not intended) but it's not necesarily as dramatic as it once was--you absolutely can manage it and get on as normal. People around you are probably doing it all the time without you even knowing.

Edited June 18, 2015 by sonofsanta

[claireadams]

Not crohn's in the end, but my dad has UC, he got diagnosed in his 60's a few years ago. He ended up having a bag but he's getting along great and really enjoying life. Hopefully once you've got some answers they'll get you under control

[elsiegee40]

You may find you have specific food triggers too, one of my friends it's white onion or onion powder and he has to avoid it altogether.

.

My friend has to avoid onions and garlic as they are triggers for her too

[ButterflyMoon]

My youngest has it. He had to have surgery two years ago to remove a portion of intestine. He is doing great now. What he found though was that by going on a gluten free diet his 'innards' respond better and he feels so much better. He is a nurse and the only thing he cannot really do is nightshift as the weird eating patterns makes him feel ill.

[sonofsanta]

On BBC News today: BBC Sport - Get Inspired: 'Having a colostomy bag doesn't have to limit your life'

 

Not a Crohn's sufferer, but still seems relevant.

[pickman]

Had Ulcerative colitis Since I was 15 but not diagnosed until I was 21(40 Now)

Had loads of test over the years and it wasn't until I told a locum doctor filling in for my normal doctor that my Mum has UC that he sent me for the tests. (there is a train of though that both disease are genetic)

+1 for Crohn's and Colitis UK real help and lots of good advise. I have found everybody is different with diets and triggers for an attack. for example I can eat onions and garlic till the cows come home but eat anything with hard fibre IE Porridge or wholemeal bread and that's likely to cause an attack. But my mum cant touch onions.

 

As people have said Crohns and UC are a hidden disease with no Visible symptoms. ITs one of these things that takes a while to control but once you are there its very manageable.

 

Hope all goes well and congrats on the wedding.

[Frazzle]

My son has IBD Unclassified. Has traits of Crohns and UC. Its been a difficult year for him since he was diagnosed at the start last year. We think he has had it for years but for a long time the Doctors misdiagnosed him as having fecal compaction. At the same time as he was diagnosed there was the image doing the rounds on social media of the girl in her bikini with the colostomy bag. This really hit him for six and he got really depressed that he would end up with a bag. He was hospitalised several times in the year as they were trying to find medication which helped. He had steroids which made his face swell up, again this caused him no end of stress as he thought he would stay like that. He is now on 2 meds of 2 and 4 tablets of Azathiaprine and Asacol. We haven't found any triggers that set it off but luckily with the medication he hasn't had a flare up now since the beginning of the year. He is slowly coming to terms with it. Its not the end of the world. We keep mentioning Sir Steve Redgrave and the fact that he didn't let having IBD stop him from winning medals.

 

You will manage the condition and you will continue to live your life. Don't let it stop you.

[pickman]

+1 for asacol great stuff 6 tablets a day does the trick for me

[fredbayker]

I was diagnosed 15yrs ago. It can be a very debilitating disease for some and manageable for others.

I think it's very much about self control, you really have to watch what you eat. I've tried all the meds and finally settled on a brand called mezavant XL. Same ingredients as Asacol but slightly different in how it delivers the mesalazine.

[Mark182]

Thanks for all the information and mainly the advice, links ect. At the moment the main thing is the tiredness, need to get that under control, knocking biking and football on the head until it get on the right path.

[elsiegee40]

http://www.fredhutch.org/en/news/center-news/2015/07/bone-marrow-transplant-shows-promise-in-crohns.html