So.. an introduction

[Misty-Eyed]

Hi guys,

I'm new here so thought I'd introduce myself- skip to the last paragraph if you are a lazy reader. I get carried away when I start writing lol.

I'm here primarily because of something that someone told me last week that got me thinking.

I've had Crohn's since I was 8 years old. It took a year to diagnose me in which time I got very ill and very thin which was pretty hard going when you have no idea what the problem is. After that I was on prednisolone for about 7 years, which some of you know isn't the greatest. They just couldn't get me off of them without me getting ill again. This caused my weight and especially my face to yo yo in short periods of time all through out my adolescent years. In addition to this, I was put on a liquid diet at the age of 12 for 3 months with a nasogastric tube. It didn't help, I was being bullied at school and eventually became depressed and had to see a child psychologist until I got over the depression.

Despite this rather traumatic childhood, (I wont add in all the other complications and medicines I was on during all this time or you'll be here reading it all day and this post is turning out to be a bit of an essay as it is!) I thought I was doing pretty ok for myself these days. I'm now 26, my crohn's is pretty much under control despite some strictures which caused me to leave uni when I was 21, and I'm now about to finish my bachelors degree for the second time of trying which I'm incredibly proud of. So, during a trip to see my specialist (my liver was feeling the strain of methotrexate) I got asked to fill in a questionaire on IBD and eating habits. Never one to turn down the opportunity to help with some research, I gladly obliged in filling it in. The very kind researcher then went over my answers with me and suggested that I may have a problem with food and maybe even may have an eating disorder and that maybe I should think about seeing someone about it. Trying to swallow the large, shocked lump which had consumed my throat suddenly, I agreed.

A few months later I was invited to see a psychologist at my specialist hospital. It was quite reassuring that she usually saw IBD patients. 90 minutes later I left feeling emotionally drained and cried the whole way home. So I didn't have an eating disorder, just 'lots of complex issues, some including food'. I was just shocked to realise that I wasn't doing so well mentally as I had thought. That's I'd produced mechanisms of coping with my crohn's and my past without realising it. Since then, I've been a bit of a mess and as such my crohn's has decided to take advantage of my mental state and run riot. *sigh*

So ANYWAY. The psychologist asked me if I ever spoke to people with Crohn's and I haven't so I thought you guys might be able to help. Plus I'm also wondering how many of you think about the mental impact your condition has on you?

 

[Peaches]

:welcome: Misty. Thank you for being so open about your situation. I can say that growing up, I went through periods of not eating very much as it would cause me to feel sick. This of course caused me to be rather thin. I also had issues around using public restrooms, which as you can imagine, would be an issue for someone with Crohn's!! This was from my younger years through my teenage years. I hadn't been diagnosed yet. The lasting effect of all that on me mentally is that I tend to be a home body and not want to go anywhere - even when I'm feeling pretty well because "you just never know!". So - I don't have a large supply of friends because of that - which is a shame, because darn it- I think I am pretty good friend material ;o) And the not eating thing, well - I've gotten over that pretty much, but if I'm having difficulties and I am out and about - I don't eat - just because I know that will kick up my gut.

That is about it for me - the social aspect is the real killer for me. I hope we can help you out here with whatever Crohn's related stuff you are suffering through. I know that talking with others for the first time in my life about this disease on this forum has really helped me tremendously.

 

[farm]

Welcome!!

I believe that the mental impact from Crohns is tremendous. I also believe that is vise-versa; being that your attitude has an impact on your Crohns.
I truly believe that you can't fight Crohns without a sense of humor.

 

[Guestly]

Hey welcome - and well done for your honesty.

Personally I think it's impossible to have Crohn's and not battle some issue with food no matter how slight. Afterall, if it hurts every time you eat, food can easily become the enemy. If you are on and off pred and your weight is all over the place, that can mess you up just as much as the pred itself!!

I take my hat off to anyone who can hand on heart say they have Crohn's and have no psychological food issues (to be that psychologically secure is awesome), but I throw my hat in the air for someone who is frank enough to be able to say, "You know what, I am a bit muddled up about it"

I know damn sure I am anyway! I was fat - and I mean FAT, until I got diagnosed about a year ago after getting really sick. Now I am rather thin, and rather screwed up! Some days I just wish I was fat again - I associate fat with being well, eating out with my family (vaguely remember those days), not having the entire local medical profession having first hand knowledge of my bumhole... yeh fat was great...

Conversely though I also obsess and worry about my new thin body - it's unfamiliar, and I don't know if it looks ok or not? Should I skip an ensure to work on the paunch? When in fact the paunch is swelling not fat? Can I get away with the skinny jeans? I still buy big clothes and then wonder why my trousers keep falling down - leggings have been a great find!

Hey... I'm screwed up! If you are starting a club for people with food issues Misty - then I'm signing up!

Anyways - welcome to the forum - great bunch of people here and loads of support - best move you made!

HUGS

Lishyloo x

 

[Misty-Eyed]

Thanks guys!

Yeah the social issue is a big one for me.. I've been addicted to the internet since I was 17 so I'm surprised I've not been here sooner. The psychologist said that it's easy to hide myself away because any time I have to leave the house I have to 'deal' with my crohn's. It's safer for me to just stay home and interact with people online where I'm in my safe environment. I have my toilet, spare underwear, don't have to worry about smells or what others may think. I just honestly never thought about it before! I think it may also explain my love of very long distance relationships which everyone I know disapproves of.

Body image is another one! I have no idea what I look like anymore. I'm so fussy with what I eat but can't turn down nice food because I appreciate it so much from periods of not being able to eat!

 

[uab grad student]

Welcome Misty-Eyed. I know it fits you now, but I hope this screen name won't be apt in the near future. We cry here and lift each other up and I hope you find a lot of comfort so that you won't be too misty-eyed anymore. ;-)

As for the psychological aspects of this disease, they are HUGE! I didn't have Crohn's as a child but just got diagnosed in December at the age of 29. Of course all Crohnies have some emotional things to deal with, but I think having the disease as a child has its own difficulties. I'm really proud to hear that you are finishing your bachelor's degree. That is awesome! School isn't easy but it will give a much needed feeling of accomplishment which can lift your spirits.

I'd search the threads--there was a thread on Crohnies that were diagnosed as children. You might relate well to these. No matter what, you are taking a great step forward to feeling better mentally and emotionally. We can all relate each other here on the forum. It's a great support network.

 

[farm]

It's much safer at home, just not quite as fun IMO. I, of course, have brutal honesty and no embarrassment in me. (Not so much fun for my son.)

We have the most embarrassing disease, which just happens to be a conversation piece that everyone avoids. It's tough to get over that hurdle, but once you do you will obtain a lot of confidence.

 

[imisspopcorn]

:welcome: Misty-Eyed...I must admit, my eyes got a little misty after reading your story. I am so glad you found this place. There are tons of friendly, informative people here who will laugh or cry with you.....

 

[Mountaingem]

:bigwave: Welcome Misty! I think anyone with Crohn's as a child/teen is bound to have "food issues" as they say...I know I did (maybe still do? I dunno).

When something as normal eating has such terrible consequences for you, how can you not? I was diagnosed at 14, and I had lists of supposed "safe" foods that were the only ones I would eat. It took me a long time to realize that no amount of food restricting could control a disease. We all have issues we need to work through-just take it a little bit at a time.

Glad you found us-having people to share with helps you realize you are not alone in your struggle. And don't let those Dr.'s comments bum you out-you would have to be incredibly stong and positive person to get a bachelor's with Crohn's-that is a huge accomplishment!:congratualtions:

 

[Rob]

Welcome misty

your story is a tough one
any disease for a child is going too be tough, especially one that can be as embarrassing as this disease - who wants be teased for poopin there pants etc at school - those things will haunt you

the fact you copes so well enough too attend uni proves your determination

as for the psychologist you saw well IMO I believe they Failed. They meant too help an slowly turn things around and assist you
not send you home in tears and full of doubt
issues or not it wasn't their right to address them in that way as too unbalance you as it did
it's meant be a slow painless process

big hugs for ya an hope ya get back on ya feet again soon

end of the day noone knows your body better than you do

 

[Jennjenn]

Welcome Misty

I am glad that you found the forum! On this forum are people who not only understand what you are going through but will try in any way to cheer you up, be friendly, help you gain confidence, and will also give you information on questions that you may have. I hope that this forum helps you as much as it helps many of us

 

[Misty-Eyed]

Welcome misty

your story is a tough one
any disease for a child is going too be tough, especially one that can be as embarrassing as this disease - who wants be teased for poopin there pants etc at school - those things will haunt you

the fact you copes so well enough too attend uni proves your determination

as for the psychologist you saw well IMO I believe they Failed. They meant too help an slowly turn things around and assist you
not send you home in tears and full of doubt
issues or not it wasn't their right to address them in that way as too unbalance you as it did
it's meant be a slow painless process

big hugs for ya an hope ya get back on ya feet again soon

end of the day noone knows your body better than you do

Well Rob, I don't think it was meant as a one off session. Obviously her first line was to assess if I had an eating disorder as a follow up to the survey I took. She said that it was good thing that the survey brought to attention these problems because now they can be followed up and dealt with properly. Despite how I'm feeling at the moment, I'm still glad I went because now it means those problems CAN be dealt with so that my future may be a little brighter. Visiting old and painful memories isn't nice, but it's better to address the problems than just sweeping them under the carpet.

Thanks for the support though Just hope I can see someone again soon to get the process continued as soon as possible!

 

[Misty-Eyed]

Thanks to all of you though. I'm feeling a little better already.

Still can't believe I've gone this long without visiting a site like this!

 

[Jerman]

welcome Misty, the emotional impact that this type of disease can be debilitating and depressing as all hell. this forum has quite literally been a life saver for me! there are some truly beautiful people here who care a great deal and are able to empathize with what we all go through. Good luck to you dear, I hope you are feeling better physically and emotionally as well real soon.

 

[CrohnieCarolyn]

Welcome Misty! I have to say that the emotional problems that come with the disease are horrible. I was a basket case when I was in constant pain and running to the can every two mins. - it took them two years to find it...but I can't imagine how kids cope with this disease - you have my sympathy and admiration - And I agree with most on here that are saying - ANYONE would have food issues dealing with this f#@king disease that long - One doctor told me many Crohnies avoid food - DUH makes sense - food = pain....
Hang in there and know you are not alone as we have all suffered emotionally because of this incurrable disease ....

 

[CrohnieCarolyn]

welcome Misty, the emotional impact that this type of disease can be debilitating and depressing as all hell. this forum has quite literally been a life saver for me! there are some truly beautiful people here who care a great deal and are able to empathize with what we all go through. Good luck to you dear, I hope you are feeling better physically and emotionally as well real soon.

Luv your quote - isn't THAT the truth!

 

[Nyx]

Welcome Misty! The people on this site are amazing (as you can probably already tell). I have no idea what you went through as a child with this disease as I was diagnosed when I was 36, but you sound like you'd handled it reasonably well.

I don't have food issues, I've always eaten whatever I want, but I did have problems with intimacy. This disease is not pretty! And it's always mortifying to have to go to the bathroom during an intimate moment....that partnered with the 'dirtiness' of the disease (and the farting....oh the farting!!) was very hard for me to get over. And now that I have a bag, it's even worse. Fortunately I have a partner that is very understanding and is letting me take my time even though I'm sure it's very frustrating for him!

Hopefully you start feeling better soon...take care,

Cindy

 

[Crohn's 35]

HI there Misty...whoa I am late on here lol. I have had Crohn's symptoms since I was a teen, and my life has been up and down like a roller coaster. I too sought out counselling, and unless they specialize in chronic diseases they don't know squat. WE know how you feel, sometimes the dark days are pity parties and that is fully allowed here!! Some are because you are worn out and wonder if you have created this mess. You are wondering if you are ever gonna feel normal and are people going to be supportive of you. The most important person is YOU and you have to look after yourself, even when others seem to not understand. I learned that if I dont look after me, who will? Your state of mind does help you heal.

You learn to change your life but dont let it control you. There are many ways to heal yourself mentally and physically.. even just going for walk, candles, warm baths and a plain old hug from some one you care about. Hang in there, when the days are good, you go..go go, and you are sick you look after you. Trial and error with everything is a learning experience. If you dont fall flat on your face, how will you ever learn to get up. Hang in there, good days will follow, they always do! ((Hugs))!

 

[shazamataz]

Welcome Misty - Really glad you have found us! You've had a rough time and, to be honest, i'd be surprised if you didn't have SOME issues! I expect we all have! I know that I have really been struggling with food since diagnosis last July because I've had all sorts of information coming in all directions about what I can and cannot eat. So I really don't know what to eat and sometimes it is easier to just not bother! I'm a bit scared of food now and that is no fun as we all need to eat!

I hope ytu find this place as helpful as I have - it's been a life saver really

 

[Misty-Eyed]

Thank you for everyone's kind words. At least having it from such a young age I've kind of forgotten what it's like to be 'normal'. Sometimes my sister accidentally leaves a floater in the toilet and it just makes me wince at how she must have literally given birth to it.

Plus like people have touched on, it kind of forced me to have a good sense of humour and develop an understanding and thoughtful personality. You have to look at the positive sides.

 

[Fog Ducker]

Welcome!