DH recently diagnosed with Crohns Disease - advise please.

[KayloHalo]

Hi, any advise on coping with Crohns welcome as dh recently diagnosed in the last couple of weeks and not really sure what to expect or how to be there for him.

I don't know much about crohns, just bits that I've picked up along the journey that was his diagnosis.

I know theres no cure but I'd like to know how to help him - he also suffers with arthritis in his feet, wrists, and fingers which is apparently connected to the bigger picture of crohns.

I'm a little overwhelmed with everything to say the least.

Thank You to anyone who can help!!
xx

it is an auto immune disease linked with rheumatoid arthritis,sore eyes and a myriad of other problems which is why it takes so long to diagnose. I guess his blood markers for arthritis are also above nromal limits too. ie rheumatoid factor ,ESR ,CRP

You can help crohns by not eating spicy food or rich cream dishes,or too much alcohol.

Flare ups are treated with steroid tablets and depending on where it is in the bowel you can also get a steroid enema(predfoam).

There is inflammaton of the bowel and sometimes there can be blood loss in the faeces. At times it can be painful but hopefully the doc should be able to put him on a maintainance dose to keep it at bay. Dont ignore any increased blood loss or extreme pain as sometmes the bowel can absess ,but this is in extreme cases.
Try and avoid the irritant foods because sometimes if the disease progresses,very inflammed parts of the bowe have to be removed. My friend had to have part of hers removed ,but is maintained well on steroids.

Good luck

There is a support group (not sure of the name I think it is Crohns and ulcerative colitis). Google it and get in touch. They'll be able to give you up to date info and support.

If there is a Gastrointestinal ward at your hospital (or even just medicine), they should have some leaflets or direct you to the dieticians.

www.nacc.org.uk is one of the support groups.

From what I know - it can be managed well by appropriate medication, diet/lifestyle changes and spotting the signs when flare ups of inflammation are occurring. Many people can continue a normal life and go for a long time without any flare ups.

Best of luck and just make sure you get all the info and support that's out there.

Thanks Aly

Nearly everything you've said so far I can place with DH, blood loss in faeces etc. Sometimes he needs to go to the loo and it's just blood.
He's got a really good consultant/specialist who rushed the diagnosis through in a few weeks even though we've been fighting for it for 4 years!
He managed to get all the tests (sigmoidoscopy x2, colonoscopy x1, endoscopy x2, barium x1) booked and completed in just a few weeks. Wish we'd have found him sooner!!!

He's got more tests due and I'm assuming the only way to keep a check on the progress of the disease is to keep doing the tests. How I wish you could tell just by doing a blood test!! I've felt so sorry for him over the last few years! He went to both of our local GP's who didn't recognize symptoms (even when we pointed it out ) and they failed/refused to do anything more than prescribe painkillers for the arthritis.

I'm hoping I'll be able to learn enough to understand better what he's going through. We're due to have a baby in July so everything seems to be happening at once. Typical eh?

Thanks Kreecher and Fandango He's signed up to the NACC website already - and he's joined a crohns forum as well which he seems to enjoy. He finds it comforting to hear other peoples stories (kind of like me and MN I guess)

Fingers crossed that it can be contained, or at least controlled in some way, enough to ease the pain that he's in at the moment anyway.

they wont do regular tests to see its progress unless he has increased problems. If there is alot of blood loss then they will investigate more,but once he has the dignosis there is little point in doing further tests unless his arthritis progresses.

I have lost faith in GP's since it took 3 yeras to diagnose that i had chronic parvo virus which has caused arthritis and bowel problems. I ended up diagnosing myself after alot of research and back tracking.

As long as the flares are controlled by steroids ,there is no reason why he shouldnt lead as normal life as anyone else. The steroids willl also help the arthritic symptoms.

If he gets dry eyes ,get some lubritears to use during the day and lacrilube atnight. My problem has left me with very similar symptoms.

Oooh I hope so!!! Those tests were horrible!!!

I know what you mean about disgnosing yourself, what is it with GP's? They don't believe us?

It's not so much dry eyes that he gets, it's like sores on his eyelids. Nasty stuff! Will mention it tho, just in case it happens in the future.
He keeps getting sores on the bottom half of his legs as well - very odd! Nothing works to ease them, even the condultant said theres nothing to treat them with.

do the sores on his eyes look like styes.

what do the sores on his legs look like as i used to work in dermatology.

It does annoy me when they glibly say ..oh well there is nothing to treat them with...i bet they would have a go if it was on their body. do you have a picture of the legs as i might be able to help

yes the sores on his eyes do look exactly like styes!

the sores on his legs look like this guys

they're shiny and tight and they swell up - but bigger than those on the picture actually, they're about 2.5 inches in diameter, and they're not scabby or anything - just really really sore.

Crohns is linked to various deficiencies, one of them is Zn, which is linked to poorly healing skin sores.
It would be worth checking his nutrient status as per this link as you could supplement with those he might be deficient in.
U aware of wheat link to autoimmune diseases?

Thanks Nightcat

Not aware of that much to be honest. Will have a nosey at that link tho - and have sent it to his email so he can check it out.

with auto immune diseases the sebaceous glands in the eyes dry up and they cause things called mebomian cysts which are caused by a blocked grease gland.(had one removed myself because ABx didnt work) Depending on how long he has had them they can be treated with chloramphenicol ointment along with using a cotton wool pad with warmed water on it to open up the gland. you have about 20 of these glands on the top and bottom lid and once you get one cyst you can be prone to more. If they dont ublock they can become very painful and press on the lens(altering the shape of the lens and vision) has he mentioned these to doc.

If it looks like this it could be psoriasis as it is asscoiated with arthritis and auto immune diseases.
If you have a real photo it would be even more helpful.

Buy some polytar shampoo and use it on the legs or ask doc if it is possibly the start of psoriatic arthropathy. Does he have any pitting in his nails or these sores any where else like elbows

I was just about to say join the NACC but I see someone has already mentioned that.

My husband suffered with ulcerative colitis for many years. About 8 years ago he had his bowel removed and then a year later had his stoma removed and was "plumbed" back in. It is so nice to have him well instead of tired and lethargic all the time, although he never ever once complained, bless him.

Good luck.

Thank you for your help - it's unlikely that I'll be able to get a real photo on here as I can only access mumsnet at work due to my dodgy laptop!

He has mentioned his eyes to his doc and he has go for them screening although no date yet for that.

The ointment that you mentioned, is that prescription only or can I buy it for him?

Bellavita Glad your husband is well - I'm looking forward to that with my husband

you can buy chloramphenicol drops or ointment,but we normally only sell it for conjunctivitis which is sore red eyes with a yellowy crusty discharge. Normally the patient has to be there to be seen unless you are lucky.
Check with doc first as i dont want to give you wrong advice.
They do sound like mebomian cysts though.Are they getting bigger over time. Poor thing ,he has my sympathy.
Try the hot water cleansing and soaking thing aswell.

For the sores on his legs... Crohn's is associated with a number of different skin conditions but the most common (away from the anal region or mouth) are erythema nodosum and pyoderma gangrenosum. Your description and the pictures most resemble erythema nodosum.

It's described in this Wikipedia entry: the text info looks OK although I don't think the picture is very good! en.wikipedia.org/wiki/Erythema_nodosum Will try and find another link.

Here are more picture links for erythema nodosum on the lower legs. (Note: EN is itself associated with many conditions, including Crohn's, but has a similar appearance regardless of the underlying associated disease.)

www.dwp.gov.uk/publications/specialist-guides/medical-conditions/a-z-of-medical-conditions/sarcoidos is/images-sarcoidosis.shtml

lh3.ggpht.com/_cFY5CAlOkLc/SKhgdJhmXtI/AAAAAAAABms/pTLQ-owPEXg/erythema+nodosum+(IBD,+Coccidoides+im itis,+TB,+Sarcoid).jpg

Do these look at all similar to what your husband is experiencing? My understanding is that treatment basically = treatment of the underlying disease i.e. here, treat the Crohn's disease and the skin condition, if it is EN, should improve too. Hope this helps.

kat is right ,it could be that too...i was talking to someone about 10 days ago who had the same things on her shins . She didnt have crohns but had EN.(wish i could remember her name??????
the steroids will help clear EN

Thank you for your replies! I spoke to my husband about EN and he says that sounds familar.

Hope you're right about when he starts the treatment for the Crohn's then everything else starts to get better too! Fingers crossed.

Kat - thank you for the links! The 3rd one you gave me looks just like what my hubby has, although he doesn't have that many! And they're bigger.

Not sure when he's seeing his consultant again but when he had the colonoscopy at the start of this month his doc he didn't want him on steroids? Could have been because the crohn's wasn't flared up though.

Gonna try and get him an apointment with GP, see what he says about the sores on his eyes.

Thanks Again - you've been so helpful!!!