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10-18-2012, 11:29 AM   #1
Jam300
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Greetings

Hello all,

My name is Jordan, i'm 21 years old. I was diagnosed with Crohns disease and Orofacial Granulomatosis when I was 14. I didn't really understand what was going on at the time, I just sat in doctors offices and nodded my head whilst the Dr's explained everything to my parents. I was put on a liquid diet of Modulen for two months and then followed an elimination diet. This saw the swelling of my lips go down slightly, but not the whole way down. After three or four years of following the diet I started eating whatever I wanted again, which didn't appear to affect me in the slightest.

I should mention that as far as i'm aware i'd never exhibited any GI symptoms, the entire thing revolved around my swollen lips. Perhaps it led on from my parents being the ones given all the information when I was younger but i've always ignored Crohn's, in complete denial because I was scared of what I might find out. I was worried if I looked into it i'd find out that people with Crohns don't live past 25 or something to that effect. All of a sudden this summer, I started thinking about Crohns, for the first time since I was maybe 16, I went to shut it out like I always have done before and couldn't, all of a sudden I had a feeling like someone had thrown a bucket of ice water over me and I was scared.

I've been following this forum as a guest for the last month or two, avoiding becoming a member because once again that would be like admitting I have a problem. I've refused to talk about Crohns with any of my nearest and dearest for the same reasons over the years. I've always heard horror storries about friends of friends with Crohns and thought, 'I can't have that, can I? I'm fine'. Recently i've noticed that my stomach feels unsettled a lot of the time, making noises a lot, bloating and gas ect. My lips are still swollen, no more than usual. My stools feel a little loose, nothing i'd call D though, one BM a day (picked up a lot of lingo from this forum). I went to see my GP about this, he said it was probably IBS and told me to eat more Fibre, which i've done. I've always eaten a fairly high fibre diet anyway, I eat a lot of nuts and drink a lot of alchohol too, once again with no GI symptoms.

I'm wondering if these symptoms have simply occured as a result of my recent anxiety and finally beggining to face my fear and learn about Crohns, it seems coincidental that I should flare up for the first time ever at the exact same time that I start worrying about Crohns? Is it possible to only ever exhibit Orofacial symptoms of this illness? Will I develop GI symptoms later on?

Of course I understand that you're not doctors, but you all seem fairly well informed. I've asked my doctor to refer me to a GI which he's done. But I can't take it any more, I can't stand doing 40+ google searches a day and reading through forums and articles.

I don't even really know what the point of this post was. I was just going to introduce myself, but that all just blurted out. I appreciate that none of you can give me medical advice, I suppose i'm just scared, I feel isolated and no one I know can give me any answers.

Nice to meet you all anyway, I know very little about CD and UC but am more than happy to chat to anyone who wants a shoulder to cry on. Your sense of community, positivity and willingness to help each other is inspiring.

Jordan
10-18-2012, 01:11 PM   #2
Trysha
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Hello Jordan,
Welcome to the forum.
It is natural to have fears of the unknown and Crohn's is no exception.
I was in denial also until a crisis made me face reality,and now I am headed for the Remicade pathway.
It is really good for you to be checked out by a GI specialist, maybe some tests like colonoscopy, endoscopy etc to establish your diagnosis---- and hopefully you will have you blood levels checked for B12, iron, CBC, Crp, Sed rate etc. Have you ever had these done that you know of. ?
It is possible to have crohn's anywhere in the GI tract from mouth to anus, so it is possible you may have it elsewhere.
Whatever, these days there are some good methods of treatment such as Remicade and Humira (biologicals) and immuno suppressants such as Imuran, 6MP, steroids etc.
Somewhere in there your GI specialist will find something to help you achieve and maintain remission.
You are not alone, there are many on this forum who have had similar experiences and I am sure will be along to help you soon.
All the best and keep your chins up!
Hugs and best wishes
Trysha
10-18-2012, 02:17 PM   #3
CrohnsChicago
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Welcome,

If you were already previously diagnosed with crohn's, I don't know why a doctor would say you have IBS...that makes no sense. Someone correct me if I am wrong please.

Good for you for getting a referral to a GI! That's the first step in figuring things out for yourself. I am learning you've got to be very pro-active about IBD and keep yourself informed in order to make proper lifestyle choices and treatment decisions. Googling is SOOOOO tempting (I admittedly do it myself, almost obsessively at times) but I would try to suppress it until your GI tells you what is going on so you know exactly what you should be googling, otherwise you risk creating more, unnecessary, stress and possibly more pain/discomfort as stress can aggravate crohn's symptoms.

I am even newer to crohn's than you but I have found this site to be extremely helpful and the folks here very supportive. I hope you find some answers soon and can get down to treating whatever's ailing you.

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10-19-2012, 04:21 AM   #4
Jam300
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Thanks for your replies guys, they're very comforting in this scary new world for me.
I went out last night and noticed that when i'm out, my stomach makes no noise, theres not really any gas, I don't really get any cramps. I started to think to myself that a lot of these symptoms might be exacerbated by the fact that i'm looking for them or foccusing on them whilst at home.

It is really good for you to be checked out by a GI specialist, maybe some tests like colonoscopy, endoscopy etc to establish your diagnosis---- and hopefully you will have you blood levels checked for B12, iron, CBC, Crp, Sed rate etc. Have you ever had these done that you know of. ?
Hi Trysha,

According to my GP I had an Endoscopy, Colonoscopy and Lip Biopsy in 2005 and was diagnosed as a result. As far as i'm aware I wasn't given any bloodwork. I'm assuming these tests are all very reliable and that it wasn't a process of elimination type diagnosis?
10-19-2012, 08:46 AM   #5
723crossroads
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Hi Jam 300,
I was diagnosed last year in August after having a constant stomach ache for 6 months and an occasional D problem that was urgent. Never in a million did i suspect crohns! But after the colonoscopy and endoscopy, that was my diagnosis. It is in the ileum and colon. I get shooting pains up the anal area sometimes too and stomach aches are back. I was on entocort after my diagnosis last year and it did put me in remission till June. I don't have D all the time, I take Cholestyramine better know as Questran for it and it is almost just like fiber without as much gas for me.It pulls the bile acids out too which I had too much of. I had very bad acid coming up into my throat and when I'd go the bathroom my bum would get sore. That's how you know it's acid.I was just reading on this forum yesterday about someone else who had the swelling of the face, which I had never heard of before! Still don't understand it.I am not on Humira or any biologics and hope I can avoid them altogether as I am afraid of these types of meds. Just deal with your symptoms as they come and do see your GI every 6 months and make sure your VitD3 is normal and your iron etc... Hope this helps and hope you stay well and never need to go on heavy meds too!!!
10-19-2012, 05:02 PM   #6
Trysha
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Hi Jordan,
It is quite possible that we all obsess over our symptoms at times.
google is so tempting with all the answers but they might not be the right ones.
It is refreshing to get out and about away from everything, I have also felt better
trying to get away from the diagnosis.Not easy.
Since you will be seeing a GI specialist and handling things for your self, don't forget to ask lots of questions, and enquire about the appropriate blood tests to be done, and the relevant scopes....Colonoscopy and Upper Endoscopy are the gold standards for diagnosis.Make sure the GI gives information on treatment and prognosis.
Please keep in touch and let us know how it goes for you.
Hugs and best wishes
Trysha
10-19-2012, 09:43 PM   #7
Jam300
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I will certainly have no shortage of questions for my newfound GI once I get my appointment with them, on that note does anyone know how long it should take for me to get an appointment with a GI on the NHS?

At this stage, does anyone have any insight into why I was not pescribed meds upon my diagnosis? This only occured to me this evening, does this say anything about the nature of my form of Crohn's?
10-19-2012, 09:53 PM   #8
723crossroads
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My guess is it wasn't very serious inside, more on the outside (your swollen lips). They will put you on meds when you need them. They don't like to put you on steroids for very long because you can become immune to them and also most other crohn's drugs. Be glad you are not full blown and maybe can keep your crohn's at bay watching your diet etc... Take your D#3 and fishoil. That is so important and try to get good nutrition. If something upsets you, avoid it next time. Good advice I should always follow. Take some GOOD probiotics too. They have a thread on here you should look into about supplements to take. They do help alot. Well keep us posted and try not to worry or stress your self. Take each day as it comes and deal with what happens for that day only.It works for me! God bless! Teresa
10-19-2012, 09:57 PM   #9
David
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Hey there Jordan and welcome.

To answer your most recent question, Modulen actually is a prescribed treatment and can be thought of as a medication in my opinion. It's a fantastic one at that. However, from there, in my opinion, you should have been put on some sort of maintenance medication OR monitored VERY closely, neither of which is sounds like happened.

We're here for you anytime you need us
10-20-2012, 08:42 AM   #10
Jam300
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Interesting information David thank you very much.

I still feel very confused about the whole thing, people say to look out for things that appear to upset me but as far as I was aware i've never exhibited GI symptoms of Crohns. Ah well, hopefully the GI will get back to me soon and provide me with some answers, I feel very confused at the moment. I also don't want to spend the rest of my life on meds but I suppose you do the best with the hand you're given in that respect.
10-23-2012, 11:41 AM   #11
Jam300
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I'm sorry to bump this topic, but I was wondering what everyones thoughts were on this article i've found:

http://news.bbc.co.uk/1/hi/health/152653.stm

It states that only 80 of 440 children with Orofacial Crohns disease actuall had the disease in their bowels, is there validity in this? Has anyone heard of such a thing?

This could explain a lot in my situation (still waiting to hear back from that GI!)
10-23-2012, 11:49 AM   #12
CrohnsChicago
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I don't know much about this particular type of crohn's but I do know I don't like the tone of that article. Especially it's use of words such as "disfiguring", "grotesque". The author really knows how to make someone with that disease feel hopeful about their situation...NOT. smh.

It sounds like it is stating that all you have to do is change your diet and things will be back to normal. I personally don't believe diet alone can cure crohn's. It helps ease symptoms, but it definitely doesn't cure the disease, just has the potential to suppress it a little. A combination of medicine (whatever medicine you use) and diet is the better approach in my opinion, especially when you are in the midst of a major flare. For example, diet alone would not have stopped the internal bleeding going on with my crohn's flares.
10-23-2012, 12:11 PM   #13
723crossroads
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Hey Jam,
The article I read made it sound like your facial symptoms were a prelude to the intestinal symptoms to come soon after. I hope that is not true in your case though. Everyone is different. The best advice is to find the best GI DR> in your area and see him.
10-24-2012, 09:31 AM   #14
Jam300
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I know, looking back on that I was probably just grasping at straws during a weak moment, silly really.

I think this whole things just being made a lot harder by the fact that I feel 'undiagnosed'. I don't mean to cause any offence by suggesting that Crohns is easy to deal with or anything, but I feel like I have all these potential symptoms just hanging over my head waiting to strike whenever. Subsequently i'm scared to do anything now in case I 'activate' Crohns so to speak.

Still on a positive note, GI appointment confirmed for the end of November, hopefully I can get some answers, just gotta get through the month first.
10-24-2012, 10:25 AM   #15
CrohnsChicago
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I don't mean to cause any offence by suggesting that Crohns is easy to deal with or anything, but I feel like I have all these potential symptoms just hanging over my head waiting to strike whenever. Subsequently i'm scared to do anything now in case I 'activate' Crohns so to speak.
There are many guesses circulating in medicine and in the minds of individual "chronies" about what causes it and what will make things better. It's all confusing at times but you have to just go with what you feel is right for yourself and your well being at times.

Not a day goes by where I don't feel like you do....on my good days, I quietly worry that one hour from now or even the next day when I wake up that I will come down with new symptoms as it seems they pop up so randomly. When I am in a flare, I openly worry that whatever food or drink I put to my mouth will leave me curled up in a ball on the bathroom floor crying in pain next to the toilet.

I know it's hard when you don't feel well...crohn's can be a very limiting disease when you are mid-flare, affecting your physical, mental and emotional state. While you may not be at your best, you need to make sure you give yourself the appropriate rest and healing methods so that you can get back to a functioning state. When you are feeling better, you need to take advantage of those days.

One thing crohn's has taught me is not to take any moment where I am feeling well and able for granted. I try my hardest not to let my fears get the best of me. Some days I succeed, some days I dont. But the important thing is I don't stop trying to live.

Just know that you are not alone. You've got plenty of support here.

Let us know how the GI visit goes!
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