Diagnosed yday & v scared :-( advice please

[Paige]

Hi there
Just joined this forum & am so pleased I can hopefully talk to somebody who can give me advice about this awful disease:-(

I was diagnosed with orofacial granulomatosis (OFG)- v uncommon autoimmune disease where my face, lips & cheeks are v V swollen. My specialist suspected I had underlying crohns as 85% of OFG sufferers have crohns & I have had a long history of IBS. Yesterday I had my results back from my bowel biopsys & I have been diagnosed with suspected crohns in my gut as the biopsies revealed granulomas throughout my small intestine. They now think its orofacial crohns in my face not OFG which means I'm riddled with it.
I'm so confused as allmy life I have had horrendous IBS symptoms but never crohns symptoms. I always suffer with constipation not diarrhoea, I don't loose weight, never have blood in poo but am forever bloated & get tummy pains. My doc who did the colonoscopy said my bowels were normal but biopsies said otherwise.
I have been placed on a cinnamon & benzoate free diet which does seem to help my face but now my guts are so painful like ive been kicked by a horse in my tummy:-( I am having further allergy tests next week & got to wait until October to see a gastroenterologist :-( . I am on no medication. I was wondering if anybody has orofacial crohns or can gut crohns sufferers kindly give me advice of any kind on what I should be or shouldnt be putting into my system? Do i need vitamin supplements? I dont eat meat does that make it worse on mybelly ? My face is really swollen today, lips especially. I now have ulcers appearing. It feels my face doesn't belong to me & I have pins & needles sensation all the time. It's really getting me down :-(

Be great to talk to someone who knows how I'm feeling! Thankyou for reading this v large post sorry for boring you! Thanks Paige x x x

 

[hlmurray99]

I don't have experience with your other condition, so I can't really comment on that, but I wanted to say that my crohn's is similar (constipation, no weight loss). I think, at least for me, that's why it went undiagnosed for so long.

I would call your doctor and see if they can make a personal call to your GI for an immediate appointment. When my doctor ran a CT scan which showed crohns, I was in a GI doctor for an emergency appointmen that next morning. In fact they had already started me on steroids and antibiotics the evening of the CT scan.

Good luck!

 

[Trysha]

Hello Paige
Sorry to hear you are having such pain and discomfort.
You should get in touch with either your GP or the specialist who has just diagnosed you.
and ask for an immediate referral to the GI specialist.
You should not be left like this without some treatment.
Crohns can be quite invasive from mouth to anus.
My crohns is lots of pain, frequent constipation no weight loss.
Currently I am being prepared for Remicade treatment but have had steroid treatments.
Feel better soon
Hugs and best wishes
Trysha

 

[Angrybird]

Hello Paige and :welcome: to the forum. With crohns it can be very different for each person on how it behaves and presents itself - constipatation can be a symptom and I myself have never had blood in my poop either. I am very concerned that you have been diagnosed with this but have to wait weeks for an appt without any kind of treatment, definetly get onto either your GP or the hospital and push to be seen sooner. Also ask your doc to have a full vitamin panel check done to see what your levels are, it is common for people with crohns to have deficiences in is area and low levels can cause other problems.

Please keep us updated on how you get on.

AB
xx

 

[Paige]

Thankyou for your replies everyone, it is very appreciated!
My doctor said there is no way i can be referred sooner to a gastroenterologist as I am on the fast track system anyway (October ! Nhs is such a joke in this country!) I am seeing my oral specialist on 1st August so I am going to see if she can refer me quicker.
I am just so confused about what I should or shouldn't eat as the diets for orofacial crohns seems different to gut crohns so because I have both it's knowing where to start!
My allergy testing next week might give me some answers.. Fingers crossed.
Thankyou AB for advice re vitamin check.. I will get on my docs case to sort that out for me. Do you think I should take vitamin tablets anyway?
Do you think it's possible I've had crohns all my life & not IBS? & im just having a massive flare up at the moment? Or would i have had bowel surgery by now as i am 34 years old.
Thankyou so much for all your comments guys & girls
Extremely grateful
Paige x x x

 

[Angrybird]

It is possibe that you could have crohns longer than first thought, unfortunately it is quite common here for people to be told initially they have IBS and it turns out to be crohns. Whilst surgery does does come into play for many of us it is not something that will definetly happen for all - it does depend on the severity of the disease for the individual and whether it has been able to be managed by meds etc. Whilst it can't hurt to take a vitamin tablet they tend not to be enough to actually sort a deficieny, your GP can sort these bloods for you so perhaps get onto them about it.

AB
xx

 

[David]

Hi Paige and welcome to the community.

My god, October?! That is INSANITY. If you can't get in sooner I would go to your GP and ask for:

1. Enteral nutrition. Please research it. It's a fantastic treatment option for Crohn's disease and can help tide you over until October.

2. Have them test your vitamin B12, vitamin B9 (folate), vitamin B6, vitamin B2, vitamin B1, and vitamin D levels. I suspect that some of those will be deficient and contributing to your facial (and other) issues. If/when they test them, get the actual results. Don't just let them tell you, "You're normal" or "you're low normal" or "you're deficient". Get the results, this is important! And share them here if you're comfortable doing so as we can provide additional insight.

If you want, we can provide some more advanced tests for your GP to consider running that your GI will potentially run as well. But the above should be well within your GP's knowledgebase though they might not understand the need for those vitamin tests.

*hugs* to you. We're here for you!

 

[Paige]

Thank you David
I am so pleased I have found this fab forum. It's great to be able to share my problems with other crohns sufferers who understand. My friend asked me out for a curry next wknd after I told her I had crohns!! Think it's going to take a while for me & everyone else for that matter to get my/ their head round it!
I will research the enteral feeding & keep on at my GP. I'm keeping my fingers crossed I can get referred sooner to a gastro enterologist if not looks like im saving the bucks for a private consultation. October is too far away .
Will get on to my docs about vitamin testing mon.
Thanks again David
Paige x