A Newbie - Feeling sorta down right now

[Danbyn]

Hi everyone,
Been recently adventuring the forms here and everyone seems really supportive, may as well try to give back to the online community too
I'm Dan, 20 years of age and currently located in the southern hemisphere in a little place called New Zealand.
I was diagnosed with Crohns disease in 2005-ish when I was 13-14 if I can recall correctly. Countless liquid diets, increased medications and a change of diet completely helped and I have been in remission for the past 2 years.. until now. Now in the most important stage of life (having full time employment after study) my lady Crohns has finally come back to me.. go figure. It's not only leaving me utterly exhausted at the end of the day, it's also interfering with.. just basic functioning in everyday life. Lack of sleep due to pains and bloating, hardly eating, extreme fatigue.. it's driving me insane and it's really hard to explain that to someone where has not experienced this condition before. Just feeling like i'm the only one.. I know that i'm not, but no-one seems to understand how hard it is.

 

[Farmwife]

Hello and a warm welcome.
I don't have this but my 6 yr old girl does.
I'm so glad you had a few years of remission but I know it's so emotionally and physically hard to be sick again.

Can you tell us what type of meds your on?
Have you thought about going back on the liquid diet, to help things simmer down?

And of course I'm a mama, have you told your GI about this new flare?

 

[Danbyn]

Thank you Farmwife!

I'm saddened to hear that what kind of symptoms is she showing?
Any mother that looks after a child with Crohns, i really admire. Now that i'm older, I really do appreciate everything my mother has done for me for the years i've had Crohns and I admit, growing up i tended to forget that. I couldn't have gone through with this without her support and i know your girl will appreciate it too

It is.. i can't socialize as much with my friends anymore, have to be vigilant about what I eat and drink BUT the pain.. that's what gets me the most. I've broken down a couple times throughout the month it's flared up because i just can't sleep with the pain. I really want to go on the liquid diet again

Yup sure thing, I'm currently on 2g of Mesalazine (8 tablets), 50mg (1 tablet) Azathioprine and a couple of lil Hyoscine-N-butylbromide tablets (which don't work in my opinion) a day.

Funny story about my GI, apparently my appointment was due close to over a year ago.. but they never informed me about it. I just assumed I was getting better and that i must have been in remission or be in remission for a long period of time. Now i have to wait 2 months for my next appointment to the GI before i can start to get MRI screening or a colonoscopy to check what the damage is

 

[24601]

Hi Danbyn :welcome:

So sorry to hear you are dealing with Crohn's. I was diagnosed at 17 and I do think it's really hard being a young adult with Crohn's, though of course it's really hard dealing with debilitating symptoms at any time. It's good to have people on this forum who do understand.

Anyway do tell us more...if you want to. We'd like to help :ghug:

 

[Danbyn]

Thank you 24601!

I'm starting to feel like maybe it isn't the end of the world. I just don't know anyone who's or know of anyone who has this illness, until now ofcourse it's nice to share the company of people who are experiencing this whether it be the person or someone close to them. Having friends that.. well are kind of a bad influence if i really look at it don't really help either. There's always that temptation to have the one drink or the one smoke at a social get together and it could potentially ruin the good progress that has been made. How have you dealt with this 24601?

 

[girlygirl]

Hi Dan.. Welcome to crohnsforum!

This has been my go to place since getting diagnosed in 2010. Some days it feels like the world around you just doesn't get it.. The pain and fatigue.. Not to mention the many other symptoms that can raise their ugly heads..

Things will get better though. I'm use to the ups and downs now. I found that as long as I keep up with my meds and try to keep the stress levels down.. And get enough sleep I can still have a drink or two.. Thus life is still the norm.. Well my new norm. My biggest challenge was not letting the little things bother me. It seems stress is a CDs worste nightmare. I try to stay positive and listen to music that makes me happy and be around people that make me smile.. It's made a big difference in my life.

Wishing you the best!
Monica

 

[danieldresen]

Good day mate, I am Daniel from the US... been dealing with Crohns since 2009, diagnosed in 2012, been one constant flare. If you need any insight or anything let me know. I have grown quite knowledgeable on this hellish condition.

 

[Danbyn]

Thanks girlygirl and Dan number 2 everyone is so welcomin, i'm surprised! Thank you all for the kind positive words in these tough times, i really do appreciate the time you took to reply back. I'll definitely message you Daniel about some food advice as i feel as if everything i eat just will not agree with me.

 

[Crohns08]

Sorry to hear you're flaring again, Dan. I was diagnosed right before my 16th birthday. What diets have you tried? Just the liquid ones?

 

[24601]

Well, the short answer to that question is not always well! I certainly found it hard to balance all the things I wanted to be able to do with Crohn's. I have to say that I often missed out on going out with friends because I was sick...but I did manage to graduate from uni even though it was quite a battle to carry on at times. I'm British and going to the pub is a pretty everyday social event as a student, and just anyway I guess, but I never was a big drinker so I would just have a few drinks occasionally really for a special event rather than often. These days I get pretty dreadfully ill when I have even a sip or two of alcohol so I just don't, but in the past a little didn't really seem to hurt. We're all different though and I guess you have to learn what works for you - and if it's not drinking alcohol find ways to prioritise that and not feel bad about being in a social situation where other people drink and you don't. I don't think I'm all that much help on this because I'm really a complete goody two shoes who has never ever tried smoking. I'm actually really happy because people can't smoke it public places anymore. As the one thing that was really proven to be connected to a worsening of Crohn's that always stressed me out. If you have to choose between one drink or one smoke then I guess the alcohol looks like a better choice...but if drinking is connected to wanting a smoke for you then I guess best to skip both...and if you're around people smoking, well it might be better not to be. Yep, I'm basically saying what you already know.

Anyway I wondered if you could get your GP to prescribe supplement drinks (even just the regular Fortisip/Ensure type drinks work in general) so you could start the liquid diet if the wait is that long with your gastro? When you're in that state of not being able to sleep or eat because of the pain I always think it's better to start treatment asap. It seems bad that they are making you wait since you're not feeling well and they are the ones who messed up with the appointment! Any chance that you can get in touch and let them know just how much your symptoms are affecting you?

 

[dave13]

Welcome Danbyn

Glad you joined the Forum after checking it out. We all have our own stories and experiences that make the Forum work. Have you checked out the young adult support group?

 

[Olivia65]

welcome to the forum