Crazy time in my life...

[jaj0016]

I was diagnosed with Crohn's last month after a year long misdiagnosis of UC and it has been a crazy experience. I am in college and away from my family so I am experiencing this mostly on my own. Its really hard going to doctors appointments by myself and trying to comprehend everything that is going on. I am not even sure the idea of a life long disease as hit me yet.

My case is also different in that my particular diagnosis is "Crohn's colitis" I cant seem to find much information about this because it is the least common of crohns conditions. I wonder how it differs from normal crohns...? I went to one doctor last week that said he was trying to reconsider my diagnosis because of the irregularities.

Also I am in college so i have missed a lot of school and work in the process of diagnosis and other general symptoms... So the added stress of life is only making things worse i am sure. Any tips on dealing with the stress?

The only medication I am on is prednisone but i hope this is not a long term treatment because the symptoms are not pleasant... from my research it seems like im not the only one...

Does anyone else notice an increased clumsiness...? or wrist or ankles just giving way sometimes? Just a recent symptom that i was wondering if it was related...

 

[Dexky]

According to our Wiki article about crohns colitis, it is crohns disease that only affects the colon. So I'd say the inflammation of the colon goes beyond surface inflammation which would be indicative of colitis. You can also do a search on crohns colitis in the search option at the top of the page. Good luck JAJ and welcome!!!

 

[DustyKat]

Hi jaj and :welcome:

I'm glad you found your way here. It must be difficult for you being at college and away from your family when you are going through this. Are they able to come visit you much?

Crohns Colitis is confined to the large bowel whereas Crohns can normally be found from the mouth to the anus. The actual appearance is the same as crohns so that is how they differentiate it from UC. UC - continuous areas of inflammation, CD - skip areas of inflammation.

This is a great place with loads of support and info so please stick around and browse through the forums and if you have any questions just fire away. Welcome aboard!

Take care,
Dusty

 

[Crohn's 35]

:welcome: to the forum :bigwave:.. Hi JA. The similarities are almost the same with UC and Cd. Most UC have it in the large bowel and are bleeders. Some have Crohn's colitis (my older sister does) and is a bleeder. I have CD and is mostly in the Ileum and a spastic colon, but I am not a bleeder.

It is very hard to get a full and complete diagnosis. Not really a fault of the doctors or yourself.

Prednisone does work, but should be a temporary fix. Usually people are put on it to hold the CD at bay whilst another drug kicks in. Prednisone in my opinion just masks and causes alot of side effects, so the less time you are on it the better. I have been on and off it, now on 10mg and my hands hurt, not in the joints but the nerves, if I pick up something without gloves I get blood blisters. Both my doctors want me off it asap.

It can make you moody, insommia and eat. The problem with pred makes you eat and in turn alot of people end up with Diabetes. See if your doctor can put you on a biologic if possible.

Stess can be eleviated with Yoga and breathing techniques. College is stressful as it is. Good luck with your studies, and your pain. Keep us posted ok? Glad you found us!

 

[Lisa]

I too have Crohns' colitis - after Drs went years bouncing back and forth between a UC and Crohns' diagnosis......

I too am wondering if the Drs are going to put you on any other type of medication?

Stress can be hard to manage - one thing I learned is that you can't let that rule your life - this disease is here to stay, whether it is active or in remission.....I think once that is acknowledged it helps....at least it helped me.....I don't let it rule my life, I live it to the fullest way possible. It may mean sometimes taking it a bit slower, or not doing certain things - at that time...but not forever.....

 

[girlygirl]

Hi JAJ

Hi Jaj!:welcome:
So glad you are here! I'm a newbie as well... and this is a great place to share, vent, scream, cry, laugh.. you name it.. and there's always someone listening with words of wisdom, and care. This has been difficult for me as well. And the best advice for stress is to write it out.. I did yesterday, and it made a world of difference! It's difficult to explain this disease to our peers when it is still so new to us, and everyone here is going through something similar, it may not be your exact symptoms.. but we all understand!
Hope you start to feel better! ((BIG HUGS))

 

[Rossy]

or wrist or ankles just giving way sometimes? Just a recent symptom that i was wondering if it was related...

Just beware that it also sometimes difficult to differentiate between symptoms of IBD and side affects of the meds as they can often be caused by both. Not sure if you are aware of this but bone/joint issues can be a problem of many and in some cases can be very debillitating.

Of course the problem with that, is that in medicating, to reduce symptoms you may get side affects whereas if you don't medicate, the disease may manifest itself in areas you would'nt really expect, ie joints/eyes/skin etc

Its all a balancing act and a changeable one at that.

With regard to the stress, just do what you can, you'll probably surprise yourself in what you can acheive but don't set too high a bar for yourself.

take care

G

 

[Astra]

Hi JAJ
and welcome

Firstly, about your stress. You've got to tell your tutors and college what's going on, you can't ignore this. If college is your stress trigger, you can change this.
Take a deep breath.
Then make a list. On this list, prioritise what's important and 'chunk' all your problems onto a mindmap. By 'chunking these problems and turning them into 'little ones' you will effectively be learning how to do CBT (cognitive behaviour therapy) This means that by changing the way you think, will change the way you behave. The way you behave will trigger your stress, Yeah?
About the pred, this isn't a pleasant med, no, but it has benefits in keeping your inflammation at bay, so instead of fighting against it, work with it and use it to your advantage. In that I mean, when you have the jittery, wizzing speedy feelings, instead of getting anxious with it, channel the energy and burn it off by working and studying.
As you taper down from 40mg, these symptoms will subside. Yes, ankle and wrist pain is common with steroids, so is other joint pain like knees and hips. Once you realise that these are 'normal' side effects, I think your anxieties will subside too.
I was scared too when I first started, I'm on my second round of them, and I just ignore all the side effects, I just keep busy, and I just say 'Sod Off Pred, you're not getting to me'
Really glad you found us, you're no longer alone with this, lots of friends here for you
lotsa luv
Joan xxx

 

[deeds]

JAJ

Joan is right about priortise, this would help with the stress...

The Dr's told me stress was a big factor in why I was so sick. I worked for months with a fever, and pain, I even went into a clinic and one Doctor said I had an ear infection, then went straight back to work. After my surgery and recovery i quit my job, moved my wife and kids back closer to family..at that point money was not everything. Today I am working and stress free, supporting my family, and living close to family again.

Good luck with the future, and hope you find your happy medium.

Dave

 

[jaj0016]

Thanks for the support and advice everyone!

My school has a disabilities program witch I am involved with and they help a lot. Ive been seeing a psychiatrist to help manage my stress and making lists help a lot.

The problem im experiencing with my ankles and wrists isnt pain just that sometimes they give out. example: I work at a restaurant and when I am handing a heavy plate to a table my wrists just gives out every once in a while causing me to drop the plate on the table (normally close enough to where is dosent matter) or i was walking across campus the other day and my ankle just gave out and i fell.

 

[reidyjo81]

Lots of good advice already so just wanted to say Welcome. I swear stress is the main trigger for my crohns, so is so so so important to channel like this that other peeps have mentioned xxx