Hello people

hello people

hi everyone i have been reading this forum for the past few weeks and decided its about time i joined, i am 22 years old and i am not totally sure exactly how long i have had crohns as the symptoms i had first was a swelling of my lower lip about 8years ago which was quite bad at first and i had lots of tests done and tried steroidal cream on the lip and quite a few other things until i was refered to see my crohns doctor (apparently there is a link between OFG and IBD) and following quite alot of tests some not to basd and others quite unpleasant lol it turned out i had crohns i tried Azathioprine for my crohns but it made me feel more unwell i am not currently on any medication and have not been for 2years so i do feel quite lucky but i dont know how long this will last as recently i been feeling pretty fatigued with a few stomach pains my doctor has pretty much left the ball in my court saying if i want treatment there are plenty of options there for me to try but to be honest i dont want any unless i have to. i find my diet plays a huge part in how i feel if i stick to a good diet i feel ok but if i dont then i feel pretty awful so for now i am just going to continue down that road and see how it goes. well theres a little bit about me only fair seen as though i am stealing advice from the site everyday now lol

dan.

Hi Dan :welcome:! Glad you found our site a "steal" :lol: It is a good way to learn about the disease being on here because we actually have the same problems but differ in others. I don't blame you at all not wanting to be on meds, the long you can avoid it the better.

Lots of people here your age and glad to help you in any way or just to vent or have a laugh or two. Welcome aboard!

Hi Dan and :welcome:

Good to see you came out from lurking! Where did they find your Crohns was located?

I hope you continue to stay relatively symptom free for a very long time to come. Stick around and keep browsing through the forums and any questions just fire away. Good luck and welcome aboard!

All the best,
Dusty

Hi Dan, welcome!! What is OFG? You are just now having stomach pain? Do you have any other symptoms? ie. diarrhea, constipation, blood etc.?

Hi Dan
and welcome fellow Brit

Glad you've joined us, you'll learn a lot from us! One thing you will learn is that it's not good to become complacent about this disease I'm afraid! We all wanna be off the meds but over time inflammation causes strictures which can lead onto narrowing then blockage! Diet plays a huge part, but only to reduce symptoms like diarrhea, bloat, gas, constipation etc, but only meds can help with inflammation. Think about a prophylactic, a preventative med like one of the 5 ASAs, ie Pentasa, Asacol or Lialda. These are used to maintain remission and work like an anti inflammatory with aspirin like properties.
I've been on Pentasa for 5 years now and have been ok. I'm saving the 'big guns' for when I'm at death's door! So I understand where you're coming from!
lotsa luv
Joan xxx

hi thanks for all the replies OFG is short for orofacial granulomatosis here is a short description of it stolen from another site: Abstract
It is widely acknowledged among gastroenterologists that the oral cavity may be involved in Crohn's disease (CD). However, the specific manifestations are poorly appreciated. Although oral aphthous ulceration is probably not diagnostically useful in patients with suspected CD, disease-specific manifestations do occur and are particularly common in children presenting with CD. These manifestations can be subtle, often are subclinical, yet commonly harbor diagnostically useful material (granulomas). Orofacial granulomatosis (OFG) is conventionally used to describe patients with overt oral disease without obvious involvement of the gastrointestinal tract. However, many patients with OFG have subclinical intestinal CD or will progress to develop overt intestinal CD with time. The management of severe oral disease is challenging and lacks a clear evidence base. Inflamm Bowel Dis 2009

and yep unfortunately i do have other symptoms i have diarrhea fairly often well what i mean is when i go to the toilet its very rarely solid but i am not constantly at the toilet (fingers crossed) and i do occasionally pass blood. i think the reason i have found the site is because it is only now that i am really starting to take this disease seriously which i know is really stupid but i just kept pretending nothing was wrong which is why i couldnt evn tell you where my crohns is it is only recently that i have all the questions as i feel the disease is getting abit worse. when i am next at the hospital i intend to find out as much as i can about my condition so i can also research it myself. one other thing it i have like a very small swelling near my 'back passage' as my doc likes to call it lol

Thanks for the explanation Dan!! My son was having some tongue "ulcers" that have seemingly responded to extra B vitamins and Hydrogen peroxide mouthwash. Good for you to take the pro-active route. Good luck!!

thanks dexky bless him its really no fun is it!!!! i get quite a few strange things going on in my mouth so i know how he feels, mouthwash helps me too

My son was diagnosed this week with CD. He has a swollen lip as well. The dentist and the oral surgeon he was referred to didn't seem to know it was related to his digestive issues. But in fairness he hasn't seen the gastro yet either. It was a couple weeks before things really took off for him.

it took me along time to eventually get refered to my crohns doctor i had biopsy of my lip and other treatments just for my lip before i was eventually refered