About time I got this off my chest..

[greg91]

Hello everyone,

Well where to start?!

I have joined this site, hoping I can meet some people who either have Crohn's Disease, or at least understand the struggle of crohn's.

I have never told anyone apart from Doctors and my close family the experiences of having Crohn's, and I want to get it off my chest.

I have had the disease since I was 11, nearly ten years now. I was once a very energetic, happy person, but for a while now I have been feeling very sad and isolated. It's my own fault really, the disease destroyed my confidence and I am also extremely insecure. The only people who know I have crohn's are my close family, I can't bare the thought of telling my friends, I know they are my friends for a reason and I really should tell them but I find it too hard, i simply find the whole topic too emotional (even if my parents start to talk about crohn's i can't help but try to hold back tears).

Crohn's also affected my mouth, and whilst at school i was bullied for having 'big lips', the medication I am on now (azathioprine) has really helped reduce the inflammation in my mouth, but from the years of bullying I had at school, I can't bare the thought of people looking at my face, and I struggle with eye contact.

I was once a promising young footballer, however I had all sorts of joint problems, and aches of pains, i also suffer with cramp a lot within my muscles. It's so frustrating because I love being active, but I can't help but feel fatigued so easily.

I understand diet has a lot to do with dealing with inflammation, etc. However I find that most foods affect me. I can not deal with fibrous foods, and believe I am also lactose intolerant (i have tried lactose free milk, and although slightly better, it's still not great). Orange juice, or anything acidic is a big no no, as well as fatty foods such as sausages, chinese food (which i hate because i love chinese food so much, ha!) I find pasta is one of the only things i can eat without triggering off any kind of reaction. I am 10 stone and 6ft, and i would love to gain weight, i have tried taking protein shakes, but these also irritate my insides!

I'm not all doom and gloom, i try to be positive, but I'm just finding it so hard because people don't understand what your going through unless you tell them, which i just haven't been able to do, yet anyways!

It doesn't help that I have no real direction in life at the moment. I am currently at university studying sports coaching, however I feel this really isn't for me, but I'm just sticking it out. I'm a really caring person, and I want to do something in life where I can help people that would also involve travelling. My life ambition is to travel the world and make a difference somehow.

Anyways, any questions, please feel free to ask. I don't mean to sound all pessimistic, but I'm just finding it all too much.

I really hope I can gain inspiration from you fellow strugglers of Crohn's.

Greg

 

[DustyKat]

Hi Greg and :welcome:

I'm so sorry to hear of all that you have been through and are going through now. I don't have CD but my two teenage children do and I have watched my daughter struggle at times, over the years, to comes to terms with aspects of this disease. You have found a wonderful place here for info, support and knowledge and you find members here that understand exactly what you are going through.

Where is your Crohn's located?

What medications have you been on previously and do you take any supplements?

Have you had your B12, Iron, Folate and Vit D levels checked recently?

Perhaps you could try some of the elemental type drinks to assist you with weight gain. We have an Elemental/Enteral Nutrition forum and as a Diet Forum so maybe have a good browse through them...

http://www.crohnsforum.com/forumdisplay.php?f=161

http://www.crohnsforum.com/forumdisplay.php?f=17

You aren't sounding pessimistic hun...:hug:

Please stay around cause we would love to have you here. Good luck and welcome aboard!

Dusty. xxx

 

[tiloah]

Hi Greg,

Welcome to the forum. I'm sorry you have had such a struggle for so long. I hope you find this forum to be a comfort and a place to socialize.

If you don't think sports coaching is for you, do you think it's possible to change your course? Or at least minor in whatever else you might want to do? The purpose of college is to train you for what you're going to do after you graduate. It's also a chance to explore and figure out what you're interested in. I hope you find something you can see yourself in.

It's not uncommon to feel like you have "no direction" at your age. I think there's this big myth out there that everyone else has their life figured out. Let me tell you, almost nobody does! I don't know if that's a comfort but I think it's better to not assume you have the rest of your life figured out than to feel like you're stuck in the choice you've made for yourself for the rest of your life. I don't know if that makes any sense. I'll stop rambling now and just say welcome again.

 

[greg91]

Thank you for comment Dusty and I'm sorry to hear your children have Crohn's. I wish them the best.

I have previously been on steriods, and the only other medication i have taken is 125mg of azathioprine daily. Oh, i also use to have infusions of remicade i believe?! But haven't had these in a couple of years. I also take multivitamin tablets.

This sounds really bad, but I do not know where my crohns is located, because i was diagnosed quite young, I can't remember what my Doctor said (but in the meantime I'll check with my parents). I know Crohn's is located in my mouth, and am pretty sure my colon, but can't remember what part of the intestine it affects. I am due to go to the hospital in little under a month to have a check up on everything, so will see what my levels are like then. From recently reading through other people's stories, I consider myself pretty lucky, as so far I haven't had to undergo any surgery!! Oh and thanks for the links I will certainly have a look!!

- Thankyou Nic also for your comment. I applied for University last minute because I wasn't enjoying the job i was stuck in, and it's too late now for me to change course. But i'm thinking everything happens for a reason, so I'm hoping something good will come out of the three years I am spending here. I hope to gain more knowledge from both of you, once again thank you for your warm welcomes.

greg x

 

[SnowDay]

Hi Greg. I really understand where you're coming from. I am a 24 yo man and have had eczema since i was a baby, it has affected my confidence and held me back my whole life. I only am recently coming to terms with the concept that i am not to blame and i urge you not to put any blame on yourself for this.

Also i realize what it's like to hide your illness from the world, but the more i'm shedding the ''shame'' of being sick, the more liberated i feel, and when people understand why you can't do things or are being held back it makes it a lot less of a burden on you.

I don't feel qualified to offer any nutritional or medical advice on your sickness since i have not yet been diagnosed w crohns, but i empathize with you and want to let you know you aren't alone in this. Please remember this isn't your fault, it's just the way things were meant to be, and don't be ashamed, it's not your fault.

I hope this helps and feel free to ask me anything or just hit me up for some support . Good luck, buddy.

 

[David]

Hi Greg and welcome, I'm glad you decided to join I'm sorry you've been through so much though

I concur that you should get your vitamin and mineral levels checked. I know people here have had great success with taking complex B vitamin for other mouth related issues associated with Crohn's, so I wonder if it would help you as well. The multivitamin is NOT enough when it comes to what many Crohnies often lack (iron, vitamin D, B12, various other B vitamins, folate) and proper supplementation can make a huge different physically and emotionally.

I hope you become a regular part of our community

*hugs*

 

[DustyKat]

Before I knew my son had CD he suffered with mouth ulcers so I did quite a bit of research on them and settled on B Complex tablets as a way of treating them. They certainly did work for him so as David has said, may be worth a try.

Dusty. xxx

 

[greg91]

Thanks SnowDay, and sorry to hear what you have been through with eczema, but it's good to hear that you are positive. Good luck with your endoscopy too, i was petrified when I had to have one, but i was young, and i look back and it went smoothly, so you should be fine!

Hi David, appreciate your comment, and I'm happy to be apart of the Crohn's community. I will take on board your recommendation of supplements ...

Oh and Dusty, I had a look at the links you sent me, do you know where I can purchase the Modulen IBD drink from, can't find it anywhere?

Thanks

x

 

[KWalker]

Hey Greg, although I'm not a sports oriented person like yourself, I too have gone through quite a bit of the same things as you (aside from the lips, I've never been on that medicine). I am only 21 too so I know exactly what you're talking about when you talk about being a teen boy with crohn's. I just had surgery for mine last week, and going in this week to talk about more surgery. Fun fun! haha. We have our ways of managing though.

Anyways, like someone else said, if you ever have any questions, feel free to ask. I'll help as much as I can.

 

[DustyKat]

Hey Greg,

Saying footballer and using the drug name Azathioprine are you located in the UK?

I'm not sure where you would get from from but I would imagine that it would be something that could be prescribed by your doctor or a dietician and picked up from a hospital or pharmacy. There are others types of drinks that are sold over the counter.

Perhaps some one in the UK may be able to help, if that is where you are from!

Dusty.

 

[Astra]

Hiya Greg
and welcome

Here's where you can get Modulen IBD from, but just ask your GP for it

http://www.nestlenutrition.co.uk/healthcare/gb/Pages/modulen_patientinfo.pdf

It's good to have here with us, enjoy the forum
lotsa luv
Joan xxx

 

[Sarahjh]

hey greg, i understand were you are coming from. When i was diagnosed at age of 15 (now 20) i was massively under-weight. I also was going to an all girls high school and the pressure was huge. I had to go to school with a tube down my nose and feed myself a milk-like diet for 6 weeks. I felt so down and was thinking "this isnt how it should be to grow up". Then after that, when i could eat, NOTHING agreed with me. even a piece of lettuce just went straight through me. Luckily after my operation, which removed 6cm of my bowel, my eating habits got much better. I love chinese as well and it sends me straight to the toilet. (but i always still eat it haha) Most foods dont agree with me now, and im always running to the toilet but i try and not let it get me down. as i always say 'you control the disease, dont let the disease control you'. Crohns can feel like a very isolating disease but it isnt if you let people into your 'crohns bubble' as i call it. your at such a young age were, you should be living your life to the max. it is a true shame about the football, such talent there. but perhaps when your more up on your feet, you might not as get as tired easily. i cant really help with the joint ache as luckily i dont really suffer from it much, only really in the winter and when ive been working too much.

i get some protein drinks which can be added into food, so it may not irritate you as much then. just ask your Crohns specialist about it. you can travel around the world and make a difference, dont let your crohns stop you doing that. you need to find the right balance to control your disease. i wouldnt get too down about your weight, just unfortunate our disease does that to us. i am quite thankful for being very skinny. i always joke with my friends, because i can eat all fatty foods and not weight, and they get jealous.

As for your university course, thats just part of life. we all get to a stage were we think 'is this for us'. i did when i went to college, but then i got on the right course and has luckily steered me in the right direction. just think about what YOU want to do, not your crohns.

sorry ive babbled on alot haha, but come on here often, because here you are not alone. there are so many of us who struggle each day, but you just have to find a way to cope with it.

if you need a talk, feel free to private message me.
take care x

 

[Mountaingem]

Welcome Greg! So glad you found us, you've been through alot and we can all benefit from your example too!

 

[greg91]

Hi KWalker, interesting to see that you also know what it's like having crohn's whilst being at a young age. Good luck with your more surgery. How does surgery come about, did your doctor recommend it, or did you suddenly go through a lot of pain and had to undergo it?

Yes Dusty I am from England haha, you guessed right, and i will definately ask my GP more about the Modulen IBD.

Thanks for your comments guys x

 

[KWalker]

Hey Greg, my surgery was for my abscess, and I've been putting it off for about 2 years now but it got so bad I couldn't walk, so I was rushed to the ER and given emergency surgery that day. Not fun! Hopefully you never get to that point. In the 10+ years I've had crohns, I've never had surgery just for crohns, and I'm currently not even on medicine so things do get better.

 

[greg91]

Ahh okay, ouch! Wow that's amazing that your not on any medication at the moment, glad to hear that. I wish you the best of health for the future.

 

[KWalker]

Thanks buddy. I wish the same to you. Keep your head up, I went through some terrible things during high school, but now I can just sit back and laugh because of my success, and for where I am today after dealing with something like this.

 

[Moggs]

Hi Greg, welcome to the forum. You'll get a lot of good advice here from folks who have been through the same thing. Crohn's came to me late in life, so I can't say I know what you are going through from that perspective, but I am a high school teacher and understand the teen socal dynamic and know it can be brutal, but I'ed rather focus on your choice of majors: sports coaching. I'm guessing you've had some anatomy classes, maybe some physiology classes? Those might easily transfer to a physical therapy or nursing program. Maybe X-ray technican or respiratory therapist or some other health related career. You will have a natural empathy for the patients. Health professionals are in high demand everywhere. Just a thought.
Moggs