Looking for advice...

[gottalearn1day]

My boyfriend was diagnosed with Crohns/Colitis with the possibility of Behcet's syndrome 18 months ago. He'd been to see, what seems like a million doctors now and for a year we were in and out of hospitals, getting treatment for whatever the disease threw at us at the time, and searching for an answer. The doctors were reluctant to put a label on what he has as he'd only just begun with symptoms, the biopsy came back with Crohns so they are treating him for that but they are treating him with Remicade every 2 months as he had uveitis in his left eye and nearly lost his vision in it. Since starting the remicade a year ago most of his symptoms stopped, his eye got better although there is some permanent damage and possible cataracts from the cortisone, which we need to go and get checked out again in a few months, however our main concern at the moment is that he has moderate to severe chest pain which comes and goes and grows with severity before easing off and it can last from anything from 1/2 hour to 3 or 4 hours..... does anybody else get this???? Do you know what it is??? Is it a type of arthritis??? What helps it??? Can the Remicade cause this??? He's had all heart tests, MRI, CAT scans etc and they don't show anything, but the pain is very real!!

Thanks for any help!!!

[Hidden]

None of us can give you medical advice, but chest/rib pain is something that some people with BD suffer from. The reasons can vary and I'm not a lover of Wikipedia, but I have seen this mentioned by BD sufferers. It may be of interest to you.

en.wikipedia.org/wiki/Costo...

If you are in the UK and you haven't been to a Centre of Excellence or seen a recommended BD Specialist, it may be worth doing that. Clearly there is something else going on besides Crohns and a BD Specialist should be able to tell you if your boyfriend has BD. If you haven't seen this already, you may find the Society's diagnostic guidelines helpful. behcets.org.uk/menus/main.a....

Your boyfriend has a confirmed diagnosis of crohns, but interestingly BD patients get similar symptoms. behcets.org.uk/Documents/we...

[gottalearn1day in reply to Hidden]

Thanks so much for the advice! I'll mention Costochondritis when we're next at the doctors, we have to go in for the next lot of remicade this week. My boyfriend is Greek and we're living here at the moment so unfortunately visiting a Centre of Excellence is out of the question at the moment... but hopefully in the future as we have some plans to come back to the uk for a while.... I had looked at the guidelines from Behcets.org when my BF was diagnosed with crohns, 1 doctor had mentioned the disease during tests so of course the 1st thing we did was read everything about Behcets on the internet.. He has alot of symptoms from Behcet's....headaches, photophobia, tiredness, inflammation in the intestines, thrombosis, mouth ulcers, uveitis, tendenitis, stiff neck, pain in his joints and this chest pain but the doctors here still say that these are symptoms of Crohns too... unfortunately they are not so common symptoms of crohns and seem to be more common symptoms of Behcets... Our doctor here has said that we shouldn't worry too much about diagnosis, as the treatment is the same, he said all we should do is pray that whichever it turns out to be, that it is light....

[Steamboat]

Hi, I get chest pain and have had the treatment for a pulmonary embolism and the bloods for a heart attack. These have not been the case. I get the pains from the high dose steroids when I have the three days of IV methlypred. It is the reflux associated with the drugs. I usually take somac 40mg twice a day but sometimes in hospital i have a somac infusion for 3 -5 days and that feels much better.

This is only my experience and the advice from tigerfeet is much more valid but do make sure you are on an acid suppressing medication as well as all the others.

Hope this adds something to help

Felicity

[gottalearn1day in reply to Steamboat]

Hi Felicity, thanks for getting back to me.... I'm sorry to hear that you have so much trouble with the acid, my boyfriend does have the occasional problem too, but the pain he has is more in his bones.... the information from TF seems very close so I'm going to mention it to the doctor next time we go...

I hope you're feeling well at the moment and thanks again for your response...

Take care

Nancy

[xandii]

Hi sweetie, glad you came online here for some reassurance if nothing else. We all sympathise with the never ending misdiagnosis problem... most of us have gone through something similar which can last years. I was over 7 years from first thoughts to final confirmation and that followed weird unexplained illnesses/pains all my life. I'm 54 and have been diagnosed over 10 years and my story is pretty typical of a lot of us BD bods.

Okay....sensible advice here. Of course the pain is real....we believe him !. However, no 2 people are the same and no-one on here would be willing or able to give you any diagnosis of what was causing it. We can't do that...but we can be supportive. Chest pain is ALWAYS a problem and one day they WILL find out what is causing it (or at least have a flipping good guess). I do get chest pain when I have problems with pulmonary congestion and other things going on in my lung area. I wonder at times if 'this is it..the final heart attack' and it subsides and I realise it is just another transient pain problem that goes along with BD. BD is not the only 'nasty' to have unknown pains and long diagnosis times so it really could be a whole range of odd syndromes/diseases that take a long time to show themselves fully. Please heed Tigerfeets advice and Read, Read and READ more about all the things that are available out there. The more you understand yourself, the more direct questions you can ask. Self help is everything.The frustration of not knowing is probably one of the worst things about getting something like BD and we all appreciate this so well. Feel free to talk..we're listening and someone will always come back to you in some way.

Could it be possible you could get your boyfriend to come online as well ?? Maybe this in itself might help him feel a little reassured ? Keep with the tests.....grit your teeth and hold his hand. If the pain gets too much seek immediate medical help....it just might be something that needs help straight away so don't assume it will just go away and dismiss it. They just may be able to give him something to help at that point in time and of course, you should always get it checked out if you're concerned immediately.You both need each other right now so much. Take care babes and keep in touch. Big hugs XX