New to all of this, wondering how to live with this

[Andrew Kashack]

Hello everyone, I'm 20 yrs old and my illness started last October with pain in my left side, vomiting and diarrhea. Eventually my symptoms got worse and by January 2014 after being taken to emergency from work multiple times I had to stop working altogether (worked at a coal mine in northern BC). I've had 2 colonoscopys,sigmoidoscopy, barium edema and a ct scan in the monthes following with only a small amount of inflammation showing up in my stomach. My specialist from up north has said that I have IBS and gastritis, however if I get pain in my right side and blood in my stool than it is more likely that I have crohns(my dad has crohns). Anyways getting to my dilemma now. I've moved down south to greater vancouver because most of my family lives down here. Lately I've had more difficulty getting sleep, I've had intense spasms of pain in my right side and I've noticed joint pain. Last night I was taken to emergency by my sisters and mother because I've been puking up everything and the last stool I passed was just blood and mucus (at the hospital). The doctor at emergency said my blood and urine test results are normal so it seems like a Crohn's flare up. My family doctor also believes it is Crohn's. They are trying to get me to a specialist asap. I've been given Tramadol for pain it has only been helping a bit I've found. I'm wondering if this is what life is gonna be like for now on. How am I going to have normal relationships with people? What girl would wanna date a sick person like me? How will I be able to focus on college when I start? Will I ever be able to partake in physical activities such as weightlifting and boxing again? These are the thoughts that have been going through my head. I just find all of this so exhausting and depressing

 

[DJW]

Hi and welcome.

The early days of this disease are probably the hardest. Everything is new and questions are normal. Once the disease is under control things won't look so bleak.

Don't give up on your plans. Sports are important.

Sending you my support.

 

[dgiouz]

hi newbie

I'm 23 and been living with crohns for a good 9 years.
It does get better.
I know how you feel about not being able to keep active. I've been playing soccer for 11 years NON STOP, despite very few flare ups. They last like 1 week where you can't really do anything but loaf on the couch, but then you feel well enough to do activities (not so intense, but feels amazing to get back)

Doctors are really good and medication is effective.

I'm currently on Remicade and before that I was on nothing (I felt fine enough to not take any medication the doctor told me to take, I would just take some anti-biotics during flare-ups and they went away)
Really not recommended though cause this summer i had a crazy bad flare-up cause I left my symptoms go on for a good month before I said anything to my doc...

If you do get a flare, which you will, MAKE SURE YOU TELL YOUR DOC EARLY so you can find a solution before it gets to the point where you can't funtion properly (at your regular intensity level) for work, school, sports, activities stuff, like that.

that's the one really important piece of advice I could give you. It might seem a bit obvious, but I'm the type of person to just ''let things pass'' and it'll go away and I was also very ''anti-medication'' like, not even advil, my mentality was always ''it'll go away by itself...''
NO not with crohns. The repercussions are REALLY not worth it.

Also, watch out for foods that might bother your stomach, cause pains, diarrheah, bla bla... and avoid them. I'm lucky enough to be able to eat and drink everything in sight without problems, hopefully you will too!

But all in all, don't let this stop you from lifting (I do 3-4x a week and I feel perfectly fine), boxing, or any sort of physical activity EVER. It wont anyways, trust you'll be as active as you want to be.

I was lucky to have my flare-ups (I've had 3 in 9 years) in the summer or winter break from school so I didnt ever have to re-take a class because I was stuck in the hospital or anything.
some people get stressed during exams and it causes some people flare-ups so just watch out for that during school


As for dating, trust me, girl's wont be bothered. I personnally haven't told any boyfriend I have crohns. It never came up. I was never in a flare-up during a relationship for me to have to tell him. Sex is perfectly fine also, although no one has gone back door on me, or ever will, ''exit only'' lolll.

So don't worry too much about this. Once you're in remission and on stable medication you'll be as if nothing ever happened. You'll forget you have crohns. I do.

I'll stop talking now,

peace

 

[Sef0912]

This can be very exhausting and depressing, but there are small lights within the tunnel and a big light at the end of the tunnel. Yes, you will have normal relationships with people, and you will find with this disease that they may be hard to come by, depending on how much you shelter yourself and how unwilling some people are to be accepting of you living with illness, but that they will be more open and honest and people will love you for who you are, not your having a chronic illness. There are girls out there in the world, don't hesitate to jump into dating or finding the one, why put your life on hold and let a disease conquer you? Once you find the medication that works for you, regardless of what you have and if it is somewhat long journey, you will be able to focus on life and college and everything else. I am not in remission by any means, but I am learning to take it one day at a time and even though I have some of these same thoughts, I am learning not to let this disease control me. I know that eventually I will find the right combo of medications and diet and reach remission, but until then I just have to keep fighting and not let opportunities pass me by that are of interest to me, even if I may be feeling crappy one day. If I am too sick one day to do something, so be it, but the disease cannot always control how I feel emotionally and mentally or else I will be stuck in a rut the rest of my life, and this just doesn't seem like a good option to me.

 

[syzygy]

Yeah, you're in the thick of the tough days and have had a rough bunch of symptoms early on. I totally agree with what others have said about trying to keep living your life as fully as you can. There are lots of management options out there. Personally, I'd recommend trusting your care to a specialist rather than a primary care physician. Others have said this above, but you should really take meds seriously because untreated inflammation (even if you don't have obvious symptoms) can lead to complications. It's important to have an ongoing management and monitoring plan rather than just reacting to how you're feeling day-to-day. Bets of luck to you. There's a lot of support and info in this forum, so welcome.

 

[Andrew Kashack]

I appreciate the quick responses, thanks for the advice and the good will! My specialist just called and has decided to prescribe me prednisone. Hopefully it can help get me through this flare-up!

 

[scottsma]

I hope the meds kick in soon and you start to feel less stressed and worried about your future. There are a lot of "horror" stories about crohns,but you need to know that we are all different in lots of ways.Some of us are very lucky that once we are on the right meds.we lead a pretty normal life. You can be a sick person who's sometimes well,or a well person who's sometimes sick.I'm luckily one of the latter.best wishes and I hope you feel better soon.

 

[dave13]

Welcome Andrew Kashack

Do you have any stricturing? I ask because of the vomiting.I had a blockage that was preceded by vomiting for months and intense pain.I had no clue about crohn's at the time,I didn't know what was going on.

Like scotsma and the other crohnies say.You can lead a life with this disease,it may be a bit challenging at times,but can be done.Many find being active is not only good for our physical well being,but good in dealing with the stress that accompanies this disease.

There are many young people that have relationship questions that you have.Here is a link to the young adult support group http://www.crohnsforum.com/showthread.php?t=57196

As you can see,there is a lot of support here.

 

[Andrew Kashack]

I seem to be sick more often than healthy, despite changing my diet. Then again I haven't been given any medication other than Nexium and Tramadol until now. Already I feel a little bit less pain but I can still feel the blockage there :/ . I appreciate the quick support during such a painful time.

 

[CrohnsChicago]

I'm really sorry to hear about your struggles with IBD. Everyone here knows it's not easy to deal with, especially in the beginning/diagnosis phase. There can often be a lot of pain, discomfort, uncertainty and feelings of discouragement with the onset of symptoms.

But what was said above is right, we are all different in how we show symptoms and how our bodies react to certain medications. What works for one person might not be the best plan for someone else and there are a number of treatment options out there to consider. But that doesn't mean remission is impossible.

There are a number of us here who have achieved remission in our own ways and have gone on to live active and healthier lives. It's all about finding the right treatment plan and developing a newer lifestyle that is more accommodating and works for you and your IBD to help achieve and maintain remission. It may take some time, but if you keep a good eye on your condition and have open, honest conversations with your doctors, you can hopefully improve the chances and speed of finding something that works for you.

I hope you find a treatment plan very soon that will get you back on track and living a normal life again. Keep your head up, you will get through this and we are here to support you along the way. :hug:

 

[JDTM]

Andrew!

I was a newbie to all of this just a few short years ago, and here's some of my personal thoughts and advice...

First off, feeling worried, depressed, or down and out kinda comes with the territory, especially at first. You're already on the right track dealing with doctors, and the sooner you get a treatment that works for you dialed in, the better. There may be some trial and error, but don't be discouraged.

Also, if you're anything like me, you're going to want to learn more about Crohn's and what it means for you. Overall, this is a good thing -- it's good to educate and inform yourself so you can make good choices and advocate for yourself as a patient. There is a flip side, however -- searching for stuff online is also an excellent way to freak yourself out. Keep in mind that long periods of remission can and do happen for many folks with IBD, but people who are doing well don't tend to hop online on a regular basis to tell the world how great they're doing. You're going to hear mainly from other people who are currently having a hard time and are in need of support, like yourself.

Bottom line -- and this is easier said than done, but still -- try not to worry about things that you think IBD will prevent you from doing, because chances are, it won't stop you. I know I'm kind of just repeating what others have already said, but I remember what it was like to be in your shoes when I first got the diagnosis.

As an aside, weightlifting and/or very physical sports such as boxing can continue to be a part of your life as well. Not sure whether American football is followed much up in BC or other parts of Canada, but I know of at least two major players that had big careers despite having Crohn's (David Garrard and Matt Light).

 

[Catherine]

Welcome to the forum.

My daughter was dx with Crohn's as a 16 year old. Almost 3 years later she has just finished her first year of university and is working as swimming teacher.

Wishing you all the best.

 

[rollinstone]

Hey dude just saw you said you're in Vancouver, can I please encourage you to check out qu biologics ssi vaccine, they're doing a trial ATM and it's honestly the most promising new treatment around imo, safe and from the compassionate use results extremely effective at giving you a sustained remission.. They're based in Vancouver, there's a few threads about the trial, check the link in my sig. God bless

 

[dave13]

Hi Andrew Kashack-how's it going? I hope these posts have given you some hope about leading your life. I agree with JDTM,research and educate yourself but don't let worse case scenarios freak you out.It tends to be true the majority of us on here are 'having a hard time' and are looking for support like JDTM says.That's what the forum is all about! You may be surprised that you may help someone while looking for help yourself.

We may be different in how CD affects us.I know we all share the common goal to heal.

It can be hard,especially in the beginning,to not dwell on what this disease is capable of.I'm there myself,next week will be one year since my resection.I'm still a newbie at this and learning each day.

Definitely be honest with your doctors,don't hold back information out of embarrassment or you don't want to bother them kinda feelings.CD can be aggressive,we have to be too.Perhaps I should say we need to be assertive,rather than aggressive,when dealing with the medical community.

Good luck and let us know how you are doing.

 

[Axelfl3333]

I agree with the above posts,once your medication kicks in ,it's not a magic bullet takes time you,ll feel better about everything it's great to be informed but be cautious about dr google it's never good news!check out this site and the nhs and CDC sites very informative by all means read the leaflets with your meds but don,t freak out about the side effects warnings there rare and your dr, s will pick up anything going astray.good luck all the best

 

[Tamera]

Andrew welcome and I am sorry you feel hopeless but I am here to tell you it will get better.
It has taken 11 months and 6 doctors and I just got my diagnosis on 11/11/2014 and I was happy. I know this seems strange but I can remember the pain from many years ago, 20 to be exact. I was misdiagnosed for that long.
At least you appear to be on the right track.
Trust and believe you will be able to find a person who will take this walk with you and once diagnosed and on meds, you will be able to finish college,marry and have kids.
Don't let this be a stumbling block but a building block.

Keep your head up!