# Young Adult Support Group



## 33WIV

I noticed that there was a teen support group and even though I'm 19 I'm just about 20. I thought I would create a space that was for young adults around there 20's. I hope that it can be a place were people can converse about anything that they want to, and find the support that need, along with sharing advice on dealing with Crohns.


----------



## rygon

Damn, I'm still too old (just turned 30) .. Maybe I should start an old codger support group


----------



## Cross-stitch gal

I'm not in my 20's.  But, let me see if I can get this group into the subforums to make it easier for you guys...


----------



## 33WIV

honestly if your early in your thirties I think it's cool. I wasn't sure how to define young adult other then not to young not to old lol  besides what's the difference between 29 and 30?


----------



## jsesaic

I'm 20, and it will be nice to talk to people my age who have gone through similar experiences!


----------



## SarahBear

I'm 21, so sign me up.


----------



## Jpow

I'm 19, but I will also be 20 in a few months


----------



## 33WIV

It's great to see post so soon. I really wanted to start this group when I discovered that crohns isn't just for old people and that there was a group for teens. I'll turn 20 in less then a month and I was diagnosed not that long ago. when I went in for the colonoscopy I remember wearing one of those open gowns for my first time. The nurse asked me if I had dentures or loose teeth and the men and women around me were old timers. I remember feelin so old and that my body was ageist faster then I was. After the sedative though I could care less. I'm not sure if it was the same or if you can relate but it's nice to know people your own age and still prim in there youth. So much less of an anomaly but part of a group  feel free to share your own first time experence if your comfortable with it


----------



## Cross-stitch gal

Believe it or not.  My very first colonoscopy was after I got married.  My husband always goes in with me to all my tests and appointments.  Even though I'm 35 whenever I go in for a test I seem to be one of the youngest there.  The others there always seem to give loving glances our way sort of like they think we're so cute!  I think that until we get into our 50's most likely we will be younger than the other patients!


----------



## jsesaic

Everytime i'm in hospital i'm always the youngest! When i was first diagnosed at 16 i was the youngest patient my specialist had, although i doubt i am now haha!


----------



## SarahBear

I'm usually the youngest, as well.  However, my first GI was a pediatric GI so it definitely didn't hit me then.  I've seen young people in the waiting room a few times at my new GI, but it's always mostly older people.  Actually, it cracked me up the other day when I went to my first rheumatologist appointment and saw that they keep walkers around their scales for people to support themselves.   Maybe because I didn't deal with this when I first was diagnosed, it doesn't really bother me?


----------



## jsesaic

I always get a lot of sympathy from other patients at hospitals because "i'm so young"  It's sweet at first but can get a tad annoying haha! But i guess it's because a lot of the older people might have gone through all the same things


----------



## rygon

I had the old guy next to me try and get into my bed twice as he thought it was his, not the best way to get woken up at 3am


----------



## Jpow

I was 15 when I had my first colonoscopy. They aren't  just for old people


----------



## afidz

you gotta love when they say "your too young to have these health problems"


----------



## SarahBear

Just to get some conversation started…  Answer any (or all) of the following, or just use them for ideas.

*- What "young adult" type situations has IBD affected for you?*

*- Has IBD affected your educational opportunities and choices?*

*- Has IBD affected your independence from your family?*

*- Has IBD affected your social relationships, dating, or your body image?*

*- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?*

*- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?*


----------



## afidz

I was dx shortly after I moved out of my parents house for the first time. I wasn't given a very fair chance at making it in the real world, but it took me over 2 years to give in and move back home, and even then I only stayed for 6 months. Really the only troubles I face as being a young adult with Crohn's is being able to keep a job and have money.


----------



## Cross-stitch gal

I was diagnosed at 18 just after moving into the dorms at college.  It was very shocking and embarrassing digesting the new diagnosis and having to use enemas with a room mate whom I didn't know.  Plus, even more so since I grew up without having to share a room anyway.

Through the years it's gotten more expensive between medication and medical appointments.  I'm sure that there are quite a few things my husband and I could better spend our money on other than my medical stuff.  Other than this, I guess there's really no other big troubles so far.


----------



## lsgs

Do I count? I'm 26 and as of yet only have 'IBD' they can't diagnose exactly what?


----------



## jsesaic

My main trouble is confidence i think. I worry about doing anything in case i get ill! I'm lucky my job is very understanding although i can't work many hours at the moment. But i do think i'm lucky i got ill after i finished school because i can't imagine being at school and dealing with it! 
It's definitely affected my body image, especially when i had the ileostomy. Luckily i've had that reversed now but i'm still extremely self conscious, which does effect dating etc. 
But on the plus side it's definitely matured me too. I guess because we all have such to deal with that we do grow up quicker than we want? I do feel i missed out on a lot of my late teens because i was just ill for most of it! Does anyone else feel this way?


----------



## alisonwilkinson

Hi i am 30 years old. I was diagnosed in 1999 at age 15. Hope i'm not to old for this support group.


----------



## Jhall713

Im 24, diagnosed at 18. sign me up


----------



## rygon

I think its all the allowances you have to make due to this disease. Not being bale to just go out and do anything without 1st checking where all the toilets are, wondering what in case you have to go in the middle of nowhere, and actually feeling good enough to make arrangements in advance. 

I especially like being outdoors and my active sports, but I do feel like I cannot do as much as I want because of this disease. Even when I do feel better theres always a little doubt in the back of my mind saying what if.


----------



## AdamJC

I'm 24 - Diagnosed when I was 19. I'll take a stab at answering these questions!

_- What "young adult" type situations has IBD affected for you?_
--> *While most of my mates were out clubbing/partying - I was trying to keep up. Trying being the operative word! At the time it was hard, but they were understanding once I was diagnosed and still stay as active socially as I can. It does affect my social life in-that I don't go out on the p**s hardly at all.*

_- Has IBD affected your educational opportunities and choices?_
--> *Thankfully I managed to get through all my GCSE's and college before being diagnosed with Crohns - I have thought of going to university but I can't afford it and couldn't guarantee I wouldn't miss out through a flare-up so given it a miss for now*

_- Has IBD affected your independence from your family?_
--> *Due to recent ongoings I unfortunately don't speak to my Mother - I don't have much other family so tend to keep my crohns and all associated problems to myself*


_- Has IBD affected your social relationships, dating, or your body image?_
--> * Yeah, absolutely! - As previously noted, if invited for 'nights out' I quite often end up turning them down due to not feeling like I could cope with it and/or not feeling 'well' enough to attend. My other half is extremely supportive and after having to call an ambulance for me several times she's pretty well trained ) - Body image was a fairly major thing that bothered me when I first became ill with crohns. I was an active, physically fit 18 year old. I had muscles in all the right places and went to the gym 4 days a week, played 5-a-side football and was very active. I was a healthy 11 stone when I first fell ill and at my worst I dropped to just under 9 stone which was horrible. I'm 24 now and only recently have I started to become happy with my body image! :-( *

_- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?_
--> *Once again, absolutely! - For me, I felt like crohns was a huge kick in the nuts - But at the same time, it was an extremely sobering realisation that this was something I'm stuck with and it needed dealing with. I'm a very positive, outgoing guy so I tried to look at in the best light I can which kinda forced me to keep my head together and as a result matured me in the process.*

_- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?_
--> *As an adult, I was able to understand exactly what was wrong with me thanks to some fairly amazing consultants. Although upsetting at first, being able to understand the gravitas of crohns and everything that goes with it along with being fairly level headed allowed me to deal with it and get on with my life. For young children I cannot possibly empathise with how they must interpret what was causing them to feel this way. Trying to explain it to a young one would be extremely difficult and I am greatful that I was able to take in all the information I was bombarded with upon being diagnosed.*

Wow... there we go, essay! Apologies 

I'm going to bed now! Night night all x


----------



## Luthien

I'm 22 and was just diagnosed last month. 
I just got married in June, moved out for the first time, and started my senior year of college. It's definitely affected my education, the past couple of semesters I was really sick but had no idea what was wrong. Thankfully I was already done with dating by the time I was diagnosed! My husband has been incredibly supportive as we go through this together. 
Crohn's has definitely affected independence from my parents, they have been so generous to help out with my recent medical bills. 
The past few months have matured me a LOT, especially with being diagnosed with crohns, everything in life has kinda hit me at this point. Hubby says it's my age combined with the diagnosis that makes it so hard.


----------



## Brenden

Im 18, not sure if that's considered young adult as technically im still a teenager. I was just recently diagnosed with IBD and still learning the ropes. I prefer to take all my medical problems on myself as im not close with my family. I like to talk to the doctor without my parents in the room. I was just recently transferred over from a pediatrician to a gastroenterologist because since im almost an adult they would have to move me soon anyways! Made more sense to just see an doctor that treated adults and start a case with her then to just have to start all over again in a year or two.


----------



## SarahBear

First off, I'd say "young adult" is more of a state of mind than a specific age group - we're definitely not going to kick anyone out for not being the right age!

Afidz, I see what you're saying about not getting a fair chance.  At times I feel the same way - there's a lot of stress associated with moving out and supporting yourself, and I'm lucky that the burden doesn't rest solely on me.  I couldn't do it.

Jsesaic, I understand how you feel about the maturity issue.  IBD affected me both similarly and very differently.  There were things I had to deal with at a young age that others didn't, so in a way, it matured me.  However, due to my health I was often absent from school (symptoms started around age eight and weren't explained until just before I turned seventeen, so there was a lot of time in there) and wasn't able to form, build and maintain social relationships like others.  I feel like I missed out on a key social learning experience.  Emotionally, I'm mature, but socially I'm not - I just don't know how to interact with others.  That causes me a lot of problems, so I feel that, overall, my Crohn's really had a negative impact on my maturity levels.  In addition to that, spending nine years undiagnosed, with no one believing me, I really handled my diagnosis well.  It was never upsetting to me; I had been sick for so long that being sick seemed normal.  I was happy to know why, have people finally take me seriously, and have a chance at treatment and feeling better.  Not sure how that relates to the maturity thing… when I started typing it, I thought it did, but now I don't know…

I think the main "young adult" issues in dealing with IBD are what I already laid out… problems achieving independence from family, completing educational goals, maintaining relationships, and the havoc it can wreck on one's body image (which is certainly a concern at any age, but is often stressed greatly for young adults).

IBD hasn't affected my independence from my family.  If anything, it encouraged it.  Living with my mother was incredibly stressful - I actually went into remission when I moved out, from the drastic decrease in my stress levels.  Because of this, I know I cannot under any circumstances allow myself to live with her again.  My Crohn's is fueling my independence from her, I suppose, but it still forces me to depend on my boyfriend.

I haven't had many body image issues.  I do feel somewhat bad about myself physically when I lose weight, and I have been on the receiving end of comments regarding eating disorders, which did bother me.  The whole, "real women have curves," nonsense and similar sayings get on my nerves, but not really on a personal level (it's obviously a jealousy-fueled statement - and you don't see us skinny girls saying that real women have protruding hip bones or some such nonsense, so it really just makes those who say it look silly).  I've never had anyone actually take issue with my physical appearance.

I don't think dealing with IBD as a young adult is significantly different from dealing with it at any other age, really.  It's all a very personal experience.  The obvious statement would be that children rely on their parents to care for them and manage their disease, but that's not true of every child - it just depends on their nature.  At all ages, IBD can interfere with life - education, work, friendships, marriages, child-rearing, etc.  On an emotional, coping level, I don't think IBD interfering with my 4th grade education is much different than it interfering with my college education, because at either point, that's an important aspect of my life - it equals out to about the same thing.  On top of that, people go through life milestones (college, career advancement, marriage, having children, etc.) at such different ages, that none of it relates solely to being a young adult.  However, I do like the idea of a young adult group.

I'm tired and rambling and I'm not sure if I even make sense anymore.


----------



## Megan20

- What "young adult" type situations has IBD affected for you?
I have lymphoynic collis and I'm 21 (I think thts how u spell it I just got diagnosed 3months ago)
- Has IBD affected your educational opportunities and choices?
I was in cos n I lost all my money for class and was told by teacher n school I could never work anywhere cuz of my disorder
- Has IBD affected your independence from your family?
Yes
- Has IBD affected your social relationships, dating, or your body image?
Yes because people who I went to school with thought I was a liar 
- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way? In ways yes cuz I shouldn't have a camera stuck up my but till I got old is wht I felt like

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult? A child doesn't have to deal with people yet and adults they kinda are more easy with what they have


----------



## sfgirl

I'm 24 years old, I was diagnosed with Crohn's my first semester of college and had 2 back to back surgeries to remove abscesses so I was dropped from all my classes and it was hard to get back in the swing on things. Everyone seem to think Crohn's Disease is just going to the bathroom too much so they can't understand how I that could possibly stop me from doing anything.

I'm currently on Pentasa, Remicade, Entocort, Ultrim (for arthritis pain), and Nexium (for heartburn)


----------



## JustAYoungLad

I'm 24 with Crohn's. Diagnosed when I was 10/11 ish. I got into remission straight away and stayed into remission for 10 years.

I went through college and university symptom free. Unfortunately in my final year just around graduation I started flaring and I've been fighting since. I think the stress of my final masters year destroyed my insides. 

Anyway, we have to keep positive! It's just a road bump on the very long road.


----------



## 33WIV

I totally now what it's like to be limited I was in the middle of training for a marathon when I started gettin sick. Now I've had to put my active life on hold for the moment till I can get everything under control. I was also told that I may run into issues with applying for peace corp but I still have hopes.


----------



## sfgirl

Are you able to do any type of exercising at all? I like to workout because it helps take my mind off of things and relieve stress but I haven't been able to figure out which ones are okay. I have arthritis also so running hurts my joints. I have a lot of bottom problems so I can't bicycle and I can't do anything to hard on my abs because it just makes my tummy pain worse.


----------



## 33WIV

I myself haven't been able to, other then easy low incline half a day hikes. I have yet to try swimming. Some easy laps at a slow speed should be fine. Swimming might help arthritis if you care to give it a try.


----------



## sfgirl

I would have to learn to swim first Lol. I've also heard yoga is good at easing pain but I'm kind of afraid to try it.


----------



## Luthien

Yoga does help! I'm in school full time and get very stressed out. Yoga helped me de-stress and relax. The pain was so much less when I was taking a yoga class. My husband says yoga NEEDS to be a part of my life now! ha


----------



## sfgirl

Thanks! I'll have to go ahead & try it. Is there any form or yoga that's best?


----------



## hingrum

I am 26 years old and I would consider myself a "young adult".  I have had Crohn's for half of my life now (began suffering symptoms at 13).  It looks like there are people who have had Crohn's from a young age all the way to being newly diagnosed in this forum. 

I have had a wide range of experiences with medications and surgeries.  I have had three small bowel resections, appendectomy, and a Cholecystectomy.  I have had strictures, ulcers, etc..  I have been on Pentasa, 6mp, Remicade, and Humira (just to name a few). 

That being said....
- What "young adult" type situations has IBD/Crohns affected for you?
I feel Crohn's has affected me as a young adult differently than it did when I was younger.  As I grow up I am focused more on my entire future and quality of life.  I am single young female and meeting someone who understands the possible consequences of Crohn's disease in the long term future is very important.  There is no cure (although remission is possible).  Crohn's disease can attack from your esophagus all the way through the rectum. 
- Has IBD affected your educational opportunities and choices?
I graduated college and was hospitalized several times, but it never affected my education.
- Has IBD affected your independence from your family?
No, this may be because I was diagnosed at a young age.  I had already learned to live with the disease. 
- Has IBD affected your social relationships, dating, or your body image?
Yes, definitely does.  Road trips, restaurants, house parties, etc.  It is a constant worry about having to urgently use the restroom.  Dating.... When entering a relationship it is hard to convey your condition to the other person w/o being embarressed.  Which you should not be embarressed about.
- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?
Being diagnosed at a young age, you know that you are sick and it is something that you have to deal with.  As an adult you come to fully realize the long term consequences and trouble that the disease can cause.  You have to work consciously to maintain a healthy lifestyle.

Here is one thing about Crohn's disease that I have had to deal with lately...
Crohn's disease is always changing.  Your symptoms change.  13 years after showing my first symptoms of Crohn's disease, I started suffering from symptoms I had not experienced before.  After a routine colonoscopy (Yes, you need ROUTINE procedures) my Crohn's disease has spread from my small bowel to the perennial region too.  My doctor and I are discussing new treatment options.  Cimzia seems to be the next drug in line.

I hope everyone knows they should not be embarrassed about their condition.  This was one thing I learned from my teenage years moving into adulthood.


----------



## sfgirl

- What "young adult" type situations has IBD/Crohns affected for you?
For me I'm not sure what to classify as a "young adult" situation. I wasn't able to go out and party for my 21st birthday (or any other birthday)

- Has IBD affected your educational opportunities and choices?
Definitely. Since I had my first flare mid semester my freshman of college I was dropped from my classes because I could't get there to fill out medical leave papers. Being dropped resulted in F's in my classes so I'm no longer eligible for financial assistance so I have to pay for it on my own and I can only afford 1 or 2 classes at a time. 

- Has IBD affected your independence from your family?
Yes. I had just moved out on my own when I got sick and i lost my job and had to move back in with my mom. She loved it but I hate it because now she treats me like I can't take care of myself. I'm in the process of moving out now and she's sad which makes me sad.

- Has IBD affected your social relationships, dating, or your body image?
Yes and No. I can't go everywhere I want to go and I'm not a fan of my body anymore because I feel like I'm either always to skinny from being sick or too fat from dreaded preds. As far as dating goes though I was already with my boyfriend when I started going through all of this so he pretty much went through it with me so to speak. He's very supportive and goes to all of my appointments with me and tries to learn as much as he can so he can take care of me when he needs to.

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?
I'm pretty sure I had Crohn's when I was younger because I remember having a lot of these symptoms just milder. The difference for me would be is that now people believe me. When I was younger my pediatrician told my mom I just wanted attention (I think that's why my mom is so overly caring now). Turning into an adult it's easier to deal with. I know NOW that it's nothing to be embarrassed about and I'm not afraid to ask for help when I need it.


----------



## DamnitCrohns

I'm a 21 year old guy from the UK, got diagnosed in august after finishing university in june.

- What "young adult" type situations has IBD affected for you?
This post-uni year was supposed to involve firstly getting a job, then saving up to travel for 3-4 months. While workingi was going to spend the weekends visiting my friends at their various universities. I have very few friends in my home town but loads who are in other cities. The uncertainty and fear that crohns has given me has meant that i havnt visited a single one of those friends. Maintaining those friendships is difficult since my only contact is now online through facebook etc.

Meanwhile, the plan to go travelling is down the drain, or more optimistically on hiatus.

I'm working a 9-5 job mon to friday living at home but my weekends pretty much involve staying at home watching movies etc, with the occasional meet up with the few friends i have around here when they're not busy.

- Has IBD affected your educational opportunities and choices?
Fortunately i finished university before i got diagnosed, doing my final year of uni with this disease simply wouldnt have happened. It was the hardest thing i've ever done in my life and that was when i was 100% healthy. That's one thing i can always be thankful for when it comes to this disease.

- Has IBD affected your independence from your family?

The plan was always to be living at home at this stage anyway, but with the prospect of travellingin a few months it wouldn't have been so bad. I'd be bored but i'd have something to look forward to. Now i'm living at home and i'm bored with nothing to look forward to.
That said, my mum has been doing everything she possibly can to help me with this disease - cooking for me, helping me make my SCD food, shopping, cleaning. I get home from work and I crash - i can't possibly imagine doing all those chores on my own whilst having my current job. I feel pretty dependent and as a result, despite being bored here and having no life, my desire to move out has dropped dramatically and im extremely thankful for what my parents are doing for me.

- Has IBD affected your social relationships, dating, or your body image?

Social relationships as mentioned before, it's hard to maintain relationships with my old uni friends since i've made so many empty promises to go and visit them and it's never been possible. 
Dating - well i pretty much just dont have any interest in women at the moment, I just don't have the energy or desire anymore, which is kind of tragic is suppose.
Body image is a huge one for me. I spent the 2 years before my diagnosis working out, lifting weights, and went from a skinny little runt to a fairly muscular, healthy looking physique. In less than 2 months all of that progress was lost and i am back to being skinny and small. It's devastating that i've lost something that became such a big part of my life (sounds lame but going to the gym was one of my favourite hobbies).

- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?

Not sure about this one, except that i'm like an old man when it comes to my leisure time lol. Would much rather have a relaxed night in than go out. That's another aspect of my personality i lost actually - I absolutely loved going clubbing and to gigs, now the idea of going out makes me think of discomfort, pain, and uncertainty.

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult? 

I suppose i'm fairly lucky in some ways that i only became ill this year, a childhood with crohn's sounds like a sad time and i feel sorry for those poor kids  As for adults i dont know really, unfortunately i don't know any adults with crohn's who are coping with life/employment/family etc. I'd be interested in talking to any older people with crohn's about their lives (by older i mean anyone older than me, not necessarily 40+ etc)


----------



## rygon

- *What "young adult" type situations has IBD affected for you?*
I guess the only differences in me being an adult is job wise. I was diagnosed at 24 so only been affected as a young adult. Luckily work have helped me (although some individuals could have cared/helped more). I think the hardest part is, these years are supposed to be the best years of your life, yet all i'm bothered about is where the nearest toilet is

- *Has IBD affected your educational opportunities and choices?*
Had to take 2 years off from my distant learning maths degree. Knock on effect is that I have forgotten most of it now i've started up again and having to take time (i havent got) to relearn it all
-*Has IBD affected your independence from your family?*
No I've always been fiercely independent. My parent live in Aus (im in UK) and I have lived on my own for a fair few years so I'm used to it. Luckily I stayed employed so could keep living in my own house.

- *Has IBD affected your social relationships, dating, or your body image?* Gets quite a bit disheartening when ppl say you have piled on the pounds when all it is is bloating. Also sucks when you are driving with a girl you fancy, only to have to stop at the nearest woods to go to the toilet. Definitely hard to be confident and date when knowing you are either ill, or could become ill at any time 

- *Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?*
I'm more cautious, but I'm still the same naive me 

- *How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?*
As a child you have others to help and comfort you. As an adult you hope you have a stable job and relationship, and understand who you are, what you want to be etc. As a young adult you are supposed to have the whole world ahead of you. Its an exciting time where you want to do the best you can, and do what you want care free.


----------



## valleysangel92

I'm 20 , will turn 21 next month , I was diagnosed last year at age 19 after dropping out of university due to my symptoms. 

- What "young adult" type situations has IBD affected for you?

University - during the short time I was there,  it was hard to concentrate in lectures,  and my flat mates werent very understanding of my situation, they would come in making lots of noise at 3 am even when I'd just been let home from hospital.  

It then meant I had to leave university and has kept me from being able to return.  

- Has IBD affected your educational opportunities and choices?

Yes,  I was at university when it hit badly..  I had to leave and lost my chance to return , and my education is still on hold.  

- Has IBD affected your independence from your family?

Yes. I had to move back home from a uni flat and I can't cook for myself or anything,  it's taking a long time to get my independence back.  

- Has IBD affected your social relationships, dating, or your body image?

I dont see my friends as often as I used to. It has caused me and my boyfriend a lot of stress,  but we have got through it together and we are stronger for it,  it's made me rely on him more than normal at early stages of the relationship but it has shown us that we can cope with whatever gets thrown at us.  

- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?

I feel I was already matured more than normal since I had other health conditions,  but I think the symptoms of IBD contributed to that. 

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?[/QUOTE]

I think as a child,  many of the choices are made for you,  you may not get as much of a say in your treatment and it can be harder to communicate your needs.  I think as a young adult,  you may not always feel ready for the choices that you have to make and there is additional pressure to go out,  party,  drink etc which some find hard to handle.  I think younger people can feel more pressure to look a certain way and it can be harder to find someone who is ready to deal with your illness as a friend or partner .


----------



## hingrum

DamnitCrohns - It sounds like you need to get your energy level up.  Once you are able to do this, visiting your friends, travelling, and exercising will be easier.  Happiness is key in healthiness.  It is proven that exercise improves happiness.  I do not want to sound like a hypocrite, bc I too have to make a effort to connect with my friends.  When I get home from work, I do not want to leave and I am exhausted!  I would encourage you to talk to your doctor about taking supplements to improve your energy.  Also, look at foods that promote energy.  With Crohns disease your digestive system does not work properly and you do not absorb all the nutrients like a normal system.  I have been anemic most of my diagnosed life.  I take iron supplements, B12 shots or supplements.  Hopefully, once you are able to gain some energy you can continue to do what you love at the gym.  Don't be discouraged you will learn the best way to cope with your illness and return to activities you love.  It just takes time to adjust to your new life.


----------



## valleysangel92

I just wanted to add that some doctors and even other patients can see you as a child still, and therefore may sugar-coat things or maybe even be a little patronizing. Doctors can sometimes look at me and see a young looking girl and think I wont know when I'm being messed around. What they don't realise is that my grandmother was a medical secretary, my uncle is in charge of a team of 250 doctors and nurses and I've been in the health system since I was 12. Plus I did a 2 year health and social care diploma and started a nursing degree. Its quite interesting how things suddenly speed up in the hospital when your uncle has a few stern words with the clinical director :ytongue: . 


I've also had nurses walk straight past me thinking that my mum or dad were the patient, since I 'look too young' to be in an adult ward or need such a big operation. I tend to get mothered a lot by the other patients on the ward, some in a nice, caring, sweet way, some in a nosey, interfering way.


----------



## jsrichards41

Hey guys. I'm 21 and currently in college. I was just diagnosed a month ago, and it has turned my world upside down. What I was hoping would be my last year of partying and being a college student is gone for sure, and since I go to a small college (fewer than 2000 students), it's very difficult to escape the party scene. Friday and Saturday nights I can't fall asleep before 3-4 in the morning due to the noise, but I'm afraid to move out of my apartment because I don't want to distance myself from my friends further than I already have to. I'm falling behind in my schoolwork, research, and job search as well...its hard to use all my energy on these things when I'm not getting the chance to do the things I love. 

I want to turn this into a good thing. Before I was diagnosed I was not productive: I drank and partied too much and it got in the way of other things I wanted to accomplish. I want to refocus myself, but I've underestimated how much these flares impact my day to day life. 

I went through a period of depression a couple years ago, and was doing so much better...just trying hard to stay on top of all this and do what I can to keep my energy up...but obviously it's tough. Going through this alone sucks...


----------



## SarahBear

jsrichards41 said:


> Hey guys. I'm 21 and currently in college. I was just diagnosed a month ago, and it has turned my world upside down. What I was hoping would be my last year of partying and being a college student is gone for sure, and since I go to a small college (fewer than 2000 students), it's very difficult to escape the party scene. Friday and Saturday nights I can't fall asleep before 3-4 in the morning due to the noise, but I'm afraid to move out of my apartment because I don't want to distance myself from my friends further than I already have to. I'm falling behind in my schoolwork, research, and job search as well...its hard to use all my energy on these things when I'm not getting the chance to do the things I love.
> 
> I want to turn this into a good thing. Before I was diagnosed I was not productive: I drank and partied too much and it got in the way of other things I wanted to accomplish. I want to refocus myself, but I've underestimated how much these flares impact my day to day life.
> 
> I went through a period of depression a couple years ago, and was doing so much better...just trying hard to stay on top of all this and do what I can to keep my energy up...but obviously it's tough. Going through this alone sucks...


I'm sorry to hear what you're going through, but it definitely gets better.  A month isn't very long to adjust and cope - you'll get the hang of things.  How long were you showing symptoms before your diagnosis?

Is the inability to sleep affecting your schoolwork, or is it only a minor issue since it's on the weekend?  Have you tried a mild sleep aid?


----------



## hingrum

I agree with Sarah Bear.  I would not expect anyone to be able to cope with the diagnosis after one month.  I find myself 13 years later still coping with symptoms of Crohn's disease.  The way I cope now has definitely changed from the time I was first diagnosed.  

Just because of your diagnosis does not mean you have to stop doing what you love.  A huge part of Crohn's disease is knowing your limits.  I have found a lot of my medications have a side effect of drowsiness.  It is important for me to get good sleep at night so I can save my energy for what I have to do during the day.  You can still go out with your friends, but you may have to go home earlier and/or not drink as much or at all.  It is hard to discipline yourself with limits.  I struggled with this too in college.  Good Luck!  I hope you are able to get back on track!


----------



## jsrichards41

SarahBear - I was diagnosed within a couple weeks of showing symptoms. Both of my parents have an IBD so the red flags went up fast. I think the bigger thing than sleep affecting my schoolwork is just stress about food (or the lack of food), and the general lack of energy. I know I've only been dealing with this for a short time, I'm really still in part of the initial shock and readjustment stage.


----------



## SarahBear

jsrichards41 said:


> SarahBear - I was diagnosed within a couple weeks of showing symptoms. Both of my parents have an IBD so the red flags went up fast. I think the bigger thing than sleep affecting my schoolwork is just stress about food (or the lack of food), and the general lack of energy. I know I've only been dealing with this for a short time, I'm really still in part of the initial shock and readjustment stage.


That is an incredibly quick diagnosis!  Sorry to hear your parents have to deal with this as well.

Are you having trouble with your appetite, keeping food down, or general broke college student problems in that area?  If it's Crohn's related, you may be able to find advice around the forum to help (I'll link you if I find any threads).  Otherwise… let me know if you figure that one out, because I'm in the same boat. 

Hopefully being familiar with the condition will help you adjust more easily.


----------



## Magnolia24

Hello! Happy to find this group. I am 24 and newly diagnosed with crohn's...

Before my diagnosis earlier this month I was severely anemic and had to get a blood transfusion. I had a nurse say: "What are you doing here? Usually the people who need blood transfusions are really old." 

Thanks. Comforting. 

I am lucky that I made it through undergrad before I started having symptoms. I really feel for those of you still in school dealing with this! That would have been a huge challenge during an already challenging time!

I moved back home with my mom this year...Was planning to save money and pursue an MFA next year. While it feels like crohn's picked a pretty good time to show up, when I've already graduated and am with my family, I feel pretty freaked about moving forward and trying to go to school next year.


----------



## Cross-stitch gal

Welcome!  We are thankful to have you join us Magnolia! :hug:


----------



## 33WIV

I have a friend who has been researching crohns for a year now he has a YouTube blog called life in the crapper. he's been doing some interesting treatments if you want to check it out he also suggested a book called breaking the visions cycle. It pretty good.


----------



## yogesy

Heyyy everyone! 23 year old from Kent, UK. My crohn's disease started when I was 4 but I wasn't diagnosed until I was 11. Okay, I'll have a go at the questions too...

- What "young adult" type situations has IBD affected for you?
--> I have never been in remission since my disease started unfortunately, so I just try to manage it as best I can. I do most things I want to, I just have to adapt. I cannot go out two nights in a row like my friends can as I tend to suffer with mouth ulcers after too much drinking, and I am always tired for a week after! I work part time as I found working full time too exhausting.

- Has IBD affected your educational opportunities and choices?
--> I struggled through my A Levels and wanted to go to university so managed that too. I am quite stubborn so I was determined not to let it beat me! It has definitely affected my career opportunities more than it did during my years at school/university. Ideally I would like to work in London but I think the commute would be too tiring.

- Has IBD affected your independence from your family?
--> I still live at home and haven't thought too much about moving out yet - I guess I will deal with that a little later. My family are extremely supportive though which is great.

- Has IBD affected your social relationships, dating, or your body image?
--> Luckily I haven't let it stop me - my ex boyfriend was very understanding so there were no real issues. I try not to let it take over my life - I guess as I cannot really remember a time before I had the disease I don't know any different. I know a few people that have been diagnosed as adults who feel quite differently though.

- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?
--> I guess it has matured me in a sense, as it stops me being as spontaneous as I would like to be sometimes - living with the disease requires more planning and being cautious. But I believe it shouldn't stop you doing anything you want to do within reason... just a case of adapting. For example, I attend festivals for days but do not risk camping for the entire weekend in case I am feeling too unwell.

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?
--> I was always a pretty easy going child so just accepted what the doctors and my parents told me and didn't really question things too much. I found it easier as a child - as an adult I feel it affects me more, I am very aware of the limitations it imposes. It has stopped me being able to work full time, which is very frustrating to say the least! 

Nice to read other people's thoughts! Hope you're all good  x


----------



## 1Lindylou

Does anyone have crohns and learning disability's?


----------



## Cross-stitch gal

I'm not sure if I had a learning disability.  But, I did have a horrible time in school.  While in college, I was sent to some sort of place where they test your learning abilities.  I believe if I remember right that they told me that I seemed to use the right side of my brain more than my left.


----------



## JustAYoungLad

Crohn's robs us all of our dreams. I'm trying to get better and then experience life.

I would be interested to know how has Crohns affected you all with fulfilling your ambitions in life? Work, travel, relationships, social, moving out?

My goal is when I'm better to just hit the road, drive to Dover in the south of UK and hit the open road in Europe, a see where I end up type situation. That's one of my ambitions but it's not going to happen any time soon :/ Its on the list though.


----------



## valleysangel92

JustAYoungLad said:


> Crohn's robs us all of our dreams. I'm trying to get better and then experience life.
> 
> I would be interested to know how has Crohns affected you all with fulfilling your ambitions in life? Work, travel, relationships, social, moving out?
> 
> My goal is when I'm better to just hit the road, drive to Dover in the south of UK and hit the open road in Europe, a see where I end up type situation. That's one of my ambitions but it's not going to happen any time soon :/ Its on the list though.


At the moment,  crohns has had a pretty big impact on my ambitions, like it's been my dream to be a specialist nurse for children since I was about 13/14 and I was just getting settled into uni with that dream becoming a reality,  and then wham, massive flare (I was undiagnosed at the time) . I may never be able to train as a nurse now,  but I will still work with children in some way if I can,  I am determined of that. If it is possible to be a nurse then I will.  

Relationships wise,  it's made it hard to see my boyfriend regularly and do 'couple ' things like eating out and going to movies,  but we are strong , and if you find the right person you can really make it work.  moving out will be difficult, especially since I'm very close to my family, but I think we can find a way to deal with that  . 

I think it is good to have goals,  I still want to do all the things I did before,  go to uni (to be a nurse if I can) , be independent, have a good job , get married,  have kids etc,  it just might take me a little longer to get those things than it would of before.  I think we should make the most of our good days /weeks /months because we can't be sure how long they will stay good for,  and I think having goals to work toward is part of that.  

For example, I'm going on holiday without my parents for the first time at New year (my bf is taking me) and although I've stayed away from them before (uni,  school stuff),  this is the first time since I was diagnosed,  and it's been keeping me going lately while I've been flaring,  as something to get to and something I can enjoy and just be like a normal 21 year old (Im 21 on the 26 th of this month)  . To 'normal ' healthy young adults,  this might not be a big deal,  but to me it's a light at the end of the tunnel and it's keeping me positive.  So no matter how big or small,  goals and things to reach are good.


----------



## JustAYoungLad

valleysangel92 said:


> At the moment,  crohns has had a pretty big impact on my ambitions, like it's been my dream to be a specialist nurse for children since I was about 13/14 and I was just getting settled into uni with that dream becoming a reality,  and then wham, massive flare (I was undiagnosed at the time) . I may never be able to train as a nurse now,  but I will still work with children in some way if I can,  I am determined of that. If it is possible to be a nurse then I will.


There is definitely a good chance of you becoming a nurse. In fact one of the nurses on my ward had Crohn's, so I believe the NHS definitely employee nurses with Crohn's. Although I don't know, if he was a nurse before hand. I imagine its just getting the training over with, I'm not sure how long a nursing degree is but any degree is a big commitment and has potential stress from exams and coursework. I would keep very optimistic, you never know where you will be in a years time. 

A back up could be a primary school teacher, potentially? I know it's much easier than training to be a nurse. I did some teaching as a placement from university for 8 weeks and it really opened my eyes to the school environment as an adult and would probably consider it in the future.



valleysangel92 said:


> For example, I'm going on holiday without my parents for the first time at New year (my bf is taking me) and although I've stayed away from them before (uni,  school stuff),  this is the first time since I was diagnosed,  and it's been keeping me going lately while I've been flaring,  as something to get to and something I can enjoy and just be like a normal 21 year old (Im 21 on the 26 th of this month)  . To 'normal ' healthy young adults,  this might not be a big deal,  but to me it's a light at the end of the tunnel and it's keeping me positive.  So no matter how big or small,  goals and things to reach are good.


So you get Christmas day and then your birthday? December must be your favourite month

I know what you means, you don't realise all the little things you take for granted. That will be nice though, going away for the new year with your bf. Starting 2014 as you mean to go on!


----------



## valleysangel92

It's not the working,  it's getting a uni to accept me,  like I got rejected this year (after my op,  before I started flaring again) because I failed the occupational health assessment , plus there's money,  I can't afford to pay the prescription charges in England and the Welsh unis seem less understanding about health issues,  you miss time = they kick you out..  My uni was amazing,  but they just couldn't hold my place,  the course is 3 years and you do a mix of theory and placements,  it's a very intense course and I'd not be able to cope with the placements while flaring if it was a bad flare,  plus my uni expressed concern over my immune system (I have another auto immune condition) and the occupational health team are concerned about my other health issues ( possible arthritis,  tachycardia,  high levels of calcium in my blood stream etc) and they were also concerned about working on a kids ward if you're taking immunosuppressive meds ( high incidence of meningitis etc) .. I'm not sure about teaching,  it's hard to get jobs these days and it's a lot of work. I haven't given up on being a nurse,  but there are a lot of hurdles to get past. I've done placements in schools when I was in college , and loved it,  but teaching itself is sooo different, although a classroom assistant appeals to me..  Or working with special needs children..  I've also considered being a play therapist. So I have options and I will keep an open mind  



Haha yeah and my brother is 2 day's after me  expensive for our family.  

Yeah exactly,  some people think it's so easy to do all this stuff,  like I envy people who can just get up and go..  Yeah I'm gonna go shopping/cinema/school/etc  today .


----------



## Essieluv

I'll be twenty soon. I was diagnosed when I was sixteen, and I can honestly say that I am not the same person anymore. Not that that's a bad thing, lol. I think what messes with me the most is that I can't drive because of how sick I am. I am a very independent person, so that is really hard for me to accept. And then my friends are always pestering me about why I should drive, it's hard because they don't understand. Sorry, that turned into a little vent session.


----------



## hingrum

I have been very lucky.  I finished college and have a great job that allows me to be out whenever I need without any consequence.  I am not sure what "occupational health assessment" is at a University, but it sounds like BS.  I travel some, but I do not let sickness get in the way of it.  I make sure if I get the "urge" to go, I go ahead and stop at a rest stop rather than try to wait.  There have been a couple of times where I had to stop on the side of the road! Embarrassing!  I have never told anyone ever!  I moved on though.  Shit happens.
Crohn's disease has not robbed me of my dreams.....yet.  I do worry it one day will.  I am 26 and I want to get married and have children.  If the newest form of treatment I am on does not work, I will need to seek help from experimental drugs where the effects are unknown.  I fear that could have a negative impact on my ability to have kids.


----------



## valleysangel92

hingrum said:


> I am not sure what "occupational health assessment" is at a University, but it sounds like BS.


Maybe they don't have these in America,  but here they do on physically demanding courses where you could end up endangering yourself or others if you aren't up to the job.  It's a health assessment where they go through your history, do a basic physical exam etc to see where you are with your health. Nursing degrees are demanding, you are expected to complete 2000 hours of clinical practice, as well as all the lectures, you do the same shift as your mentor on clinical placements,  so if your mentor does a 12 hour night shift,  so do you.  If you do not complete this,  you do not gain your registration and you just wasted 3 years, and although you can take an intermission, this can only be for the max of one year,  and all theory and practical hours must be completed within 5 years of registration onto the course,  if not,  you start again.  I assure you,  they are not 'bs' would you want someone who is in a position where they cannot concentrate because they are too sick themselves to be treating you or your child?  I know I definitly wouldn't.  One mistake,  that's all it takes to ruin a child's life or worse..  So I'd actually rather them be strict and be brutal than let anyone practice that might be a danger for any reason.  If I had gone back to uni, I probably would of left again because I just would of got sick and been in a+e again.  The screenings are there to protect the students as well as anyone else.  Of course,  for an ordinary degree,  these screenings are either not there or are far less strict,  I was told if I wanted to do a less stressful,  non physical degree such as English lit.  then I could go back whenever I wanted .


----------



## valleysangel92

The hours and time limits are the governing body's rules and they apply to the whole of the UK,  the unis have nothing to do with it.


----------



## hingrum

I assure you,  they are not 'bs' would you want someone who is in a position where they cannot concentrate because they are too sick themselves to be treating you or your child?  I know I definitly wouldn't.  One mistake,  that's all it takes to ruin a child's life or worse..




I was not trying to step on your toes.  I was surprised and would like to know I am not judged or measured based on a diagnosis.  We do not have that here in the US.  It would never come up that I have Crohn's disease when applying to any program at the school.  Everywhere does it differently though.  I think it would be a shame not to be able to do what I wanted in life because of government regulations based on a Crohn's diagnosis (where severity varies throughout your life).  ANYONE can lose concentration and make a mistake.  To each their own.


----------



## valleysangel92

It isn't about the diagnosis of crohns,  it's about how your health is at that specific time.  If you are in remission at the time you apply,  with a stable treatment plan in place then you have just as much chance of getting onto the course as anyone else.  I also have tachycardia, which at one point was making me go dizzy and collapse with no warning so it wasn't just as basic as having or not having crohns or whatever other condition. Loosing concentration as a nurse could cost someone's life,  that's the risk that they have to take.  Of course I would prefer not to have to prove myself to these people,  but everyone here has to if they want to be a nurse.  But this is part of my goal,  that I will get well,  and prove the people who said I can't do it wrong  that's what us crohnies do after all   .


----------



## hingrum

Thank you for your perspective though Valleysangel92.  It helps me understand a lot of the posts from other people who are from the UK.


----------



## valleysangel92

Yes,  things are sooooo different here..  Some for the good ( like the screening safe guards patients and students)  some for the bad (lack of nurses , hospital beds,  being held back because of illness etc) and it's always interesting to see the differences between our countries and I think that does really affect our experiences as young people with crohns too.


----------



## valleysangel92

If you would ever like to talk about these differences more in-depth or you have questions about the way things are here,  you are welcome to pm me and I will answer to the best of my ability


----------



## JustAYoungLad

hingrum said:


> I travel some, but I do not let sickness get in the way of it.  I make sure if I get the "urge" to go, I go ahead and stop at a rest stop rather than try to wait.


How long do you go travelling for? Do you plan ahead?

Like I said next year I want to drive around Europe, for a good couple of weeks once I'm all well, can't wait. See a bit of the world. Just worried about getting ill abroad. I think our (UK) EU medical card only covers so much.


----------



## Jpow

Crohn's really screwed up my goals/dreams. I wanted to join the Army. The military is the only place I feel that I would belong in. Now anything I pursue I just dont feel passionate about doing, which really sucks. :/


----------



## Jpow

Even if I joined the Army and was a terrible soldier/couldnt make it, I would have known I put everything into it. I just wish I could have had a chance at it.


----------



## Cross-stitch gal

I would have loved to be a child counselor.  But, it wasn't IBD that changed my plans.  My problem was that I couldn't pass the classes for it.  Where I'm working isn't the most fun place on earth.  But, it does pay the bills and give me medical insurance.  If I can take some classes online after Christmas, it's a possibility that I can do something a little different eventually.


----------



## hingrum

My traveling is probably more limited than what you want to do.  I only have so many weeks of vacation time at my job.  So if I wanted to travel far, I would fly.   

Cross stitch girl -  even though I love my job, now that I am older I realize I may enjoy a different career in the long term.  I have also been looking at online programs at the University in my town to begin that process.     I wouldn't be able to begin until May though if I do.  I waited to late for the spring semester.  
Online options are great!  My brother does it too at Penn St


----------



## Cross-stitch gal

The reason why I can begin at anytime is mine are youtube tutorials.  I began with microsoft office 2010 Publisher,Word, Access and Excel.  The one I'm wanting to learn is Photoshop.  I'm seeing quite a few places I can go if I learn photoshop.  So, we'll see what I can do with this new challenge...


----------



## jsrichards41

I'm not really sure whether or not this is the place for this, but seeing as it's a young adult group ... How do y'all go about dating? I'm 21 and I know that the more I withdraw myself the more unhappy I'm going to be. There's finally a girl I want to ask out, but I'm currently in constant pain and virtually unable to eat, and there isn't an end in sight right now. Yeah, dating may seem trivial, but I think mental health goes a long way towards physical health, and the more I sit on my couch watching TV, the more depressed I get.


----------



## Cross-stitch gal

I'm sorry.   I know that I'm no help.  It's been so long since I've dated.  I've been married over 13 1/2 years.  When my husband and I were dating I was flaring a bit though.  Made things a bit of a challenge.  We did a lot of hiking and outdoor activity.  There was a time or two when we had to stop along the trail for a pit stop.  But, my husband even then was very supportive and helpful.

Unlike me.  Is it possible to find some indoor activities or something you can do on your dates?  I know it's a bit easier for us girls to carry basic neccessities in our purses.  But, depending on where you are you could always carry a man bag.  Good luck!   I hope someone else out there has a few more ideas...


----------



## 1Lindylou

Dating is hard, no one seems to understand what it's like staying in all the time, or everyone around you is drinking and you can't it's less fun. I've been there done that my ex boyfriend would get mad at me and just say I'm lazy and his friends didn't like me because I was to quite, it's not my fault everyone else is drinking and being loud I'm trying to make the best out the situation. My current bf has never seen me with a flare, I guess that will be his alltiment test. Sorry idk how to spell it.


----------



## SarahBear

jsrichards41 said:


> I'm not really sure whether or not this is the place for this, but seeing as it's a young adult group ... How do y'all go about dating? I'm 21 and I know that the more I withdraw myself the more unhappy I'm going to be. There's finally a girl I want to ask out, but I'm currently in constant pain and virtually unable to eat, and there isn't an end in sight right now. Yeah, dating may seem trivial, but I think mental health goes a long way towards physical health, and the more I sit on my couch watching TV, the more depressed I get.


It's not trivial, and my best advice is… just go for it.  Personally, all of my relationships have formed out of friendships and they already knew about my Crohn's _because_ we were friends (I'm very open about it).  I just find it to be less stressful that way.

However, if the stress of trying to date makes you feel worse… please try not to focus on it so much.  It is an important part of life, definitely.  However, health needs to come first so that you can get control of your condition.  Additionally, dating is easier when you're feeling well.  If it does become stressful, I'd suggest just going for friends right now.  If it evolves easily from there, that's good, too.

I hope things go well! :hug:


----------



## Essieluv

Jpow said:


> Crohn's really screwed up my goals/dreams. I wanted to join the Army. The military is the only place I feel that I would belong in. Now anything I pursue I just dont feel passionate about doing, which really sucks. :/


I wanted to join the army, too. But then I got sick and now it isn't a possibility. I was really crushed when I learned that I wouldn't be able to join. I feel you there.


----------



## JustAYoungLad

Dating can be difficult with any problem, but if you find someone who likes you for who you are then you'll be fine. I would say go for any opportunity, you don't know how it will play out. Best of luck mate.

Also Essieluv, have you considered law enforcement?


----------



## valleysangel92

jsrichards41 said:


> I'm not really sure whether or not this is the place for this, but seeing as it's a young adult group ... How do y'all go about dating? I'm 21 and I know that the more I withdraw myself the more unhappy I'm going to be. There's finally a girl I want to ask out, but I'm currently in constant pain and virtually unable to eat, and there isn't an end in sight right now. Yeah, dating may seem trivial, but I think mental health goes a long way towards physical health, and the more I sit on my couch watching TV, the more depressed I get.


I agree with the others..  dating isn't easy generally,  but with a chronic illness it can be even harder..  you just need to take your time, remember that there isn't any rush yet,  mental health and physical health do go hand in hand,  and having the support of a partner can really help when flaring.  That being said, there's no reason to rush into anything,  in my experience , the best relationships come from being friends first. That way you slowly build trust and they get to know you and can even get to know your illness from a distance.  My boyfriend and I were close friends for a long time before we got into a relationship, and even though I didn't have a diagnosis, he knew I wasn't well,  and shortly after we became official I got very sick..  But because we had already built a strong bond as friends,  it didn't affect our relationship as much as it could,  we hung out at my place a lot,  watching films etc and having fun, quality time. If you can make friends and bond like that then it's a good way to start,  it builds a good strong foundation.


----------



## tessalouise

Hi all,

I'm 24 and was diagnosed Inflammatory Bowel Disease however won't have a Crohn's or colitis diagnosis till after another colonoscopy in late February. I was diagnosed about 10 weeks ago after 3 weeks in hospital. Have had 3 infliximab transfusions and am on my last week of prendinsone after tapering down from 100mg. I also take 4 500mg sulfasalazine tablets a day (just dropped back from having 8 a day) and 100g of mercaptopurine. I have noticed since dropping the sulfasalazine back that my stomach has been a bit tender and have had cramping but that is the only pain I have at the moment. I have been experiencing a horrible taste in my mouth over the last couple of weeks which I originally thought was from my meds but my gp suggested it could be from a chest infection I have which came about from my immune system being suppressed. I am flying out of Australia to Europe next week for 5 weeks. Am nervous about travelling with being diagnosed so recently and still being so confused by the disease. My gastroenterologist and GP cleared me to go and I am just hoping I don't have a flair up mid trip. At least I know infliximab and prendinsone work well for me. Happy to see there is a support group for us young ones with this old person disease haha


----------



## Saeed

I'm 24,taking many medications ,had surgery ,and I go to the hospital a lot. Sometime I think I'm too young to do these things. I really feel I'm not alone here, thank you.


----------



## naffisa

Hi I'm Naffisa, completely new to this, have been thinking of joining a forum but always avoided it. 
Im 21 
Diagnosed with CD and Arthiritis at the age of 9 
currently taking - asacol, prednisone
previously taken - prednisone,infliximab,mesalazine,azathioprine,pentasa,steroid injections,nutrition fluids. 
just generally feel I need help to see it from someone elses perspective or how someone other than myself lives with this condition.


----------



## SarahBear

naffisa said:


> Hi I'm Naffisa, completely new to this, have been thinking of joining a forum but always avoided it.
> Im 21
> Diagnosed with CD and Arthiritis at the age of 9
> currently taking - asacol, prednisone
> previously taken - prednisone,infliximab,mesalazine,azathioprine,pentasa,steroid injections,nutrition fluids.
> just generally feel I need help to see it from someone elses perspective or how someone other than myself lives with this condition.


Welcome, Naffisa!  Glad you've decided to join. 

Is there anything specific that you're struggling with right now, or just the CD and arthritis in general?


----------



## naffisa

Hi, Sarah 
I just struggle with being myself lately, like I'm finding it all a bit too much, I'm currently suffering from a water infection at the moment and severe abdominal pain due to medicine, my joint pain is under control due to the steroids which I'm more than happy about, but I'm just feeling down and depressed I've never felt like this, I've been reading a lot about patients with CD who have developed cancer through treatment, and I thought nothing of it cause everyone's different but I later found a lump in my breast and I'm too scared to get it checked maybe I'm thinking too much or I'm stressed I guess I just needed someone to talk to
X


----------



## SarahBear

:hug: It's definitely difficult!

How long have you been on the steroids, and are they planning to keep you on them?  The steroids could unfortunately be adding to the depression symptoms.  

I know it's scary, but please, please get the lump looked at ASAP.  If there is anything to worry about (which there likely isn't), the sooner you get to it, the easier it is to treat. :hug: Please don't put it off!

Some medications can cause cancer, yes… but that's not common.  I personally would not let that deter me from taking a medication, as the symptoms of untreated or improperly treated Crohn's can be just as difficult.


----------



## JustAYoungLad

naffisa said:


> Hi, Sarah
> I just struggle with being myself lately, like I'm finding it all a bit too much, I'm currently suffering from a water infection at the moment and severe abdominal pain due to medicine, my joint pain is under control due to the steroids which I'm more than happy about, but I'm just feeling down and depressed I've never felt like this, I've been reading a lot about patients with CD who have developed cancer through treatment, and I thought nothing of it cause everyone's different but I later found a lump in my breast and I'm too scared to get it checked maybe I'm thinking too much or I'm stressed I guess I just needed someone to talk to
> X


I'm sorry your going through this . Good you've joined, there is a great community here. 

Hope it all gets better for you!


----------



## Alicat44

I'm new to any type of forum and decided to join because I don't know anyone going through this terrible disease like I am. It would be nice to talk to some people around my age that I can relate to. I'm 19, and live in sunny Florida. I don't really know what to say on this type of forum /:


----------



## Cross-stitch gal

There are many of us on here in the same boat.  There's a whole lot of us on here and isn't really much that will surprise us.  Even those who have been on here awhile do get scared and need some support.  So don't worry.  Take a look around, there are a whole bunch of different discussions and not many of them are the same.  Let me know if I can help.  Xxxx


----------



## Alicat44

Thank you cross-stitch gal! I really need it. I've had crohns for 9 years but it just seems to be getting harder running out of options /: it's nice to talk to someone who can relate.


----------



## Cross-stitch gal

Even though I might not say much in this group, I'm still around.  Plus, you guys can feel free to message me if you need me.


----------



## JustAYoungLad

Alicat44 said:


> I'm new to any type of forum and decided to join because I don't know anyone going through this terrible disease like I am. It would be nice to talk to some people around my age that I can relate to. I'm 19, and live in sunny Florida. I don't really know what to say on this type of forum /:


Hey Alicat, welcome! 

Hope it gets better for you! I know it's hard, but don't worry about the options for the future. There are so many medications now to treat Crohn's. Like yourself I was diagnosed at 11 years old about 13 years ago now. Humira, a biologic which I've recently been on, wasn't even available back then. 

If you need any advice just ask around the forum. I guarantee you will find at least one person, if not many who have been on the same drugs as you and we all have gone through similar experiences.

All the best!

PS. I envy you living in sunny Florida. The forecast for the UK is rain, rain and more rain. It's like a biblical event outside right now.


----------



## Danielle210492

Hi all  im 21 and was diagnosed with Crohns last year. Its hard finding other people of a similar age with disease so im glad i found this site for support x


----------



## Alicat44

Thank you, I'm trying to stay positive and find a solution to crohns. Have you been on any medicine that has been working? I'm on Humira and 6mp, and now this new medicine xiafian. Haha it's not sappost to be hot in December! I wish I could get some snowy weather, Im sorry your stuck inside from the dreary weather.


----------



## Alicat44

Hi Danielle  I know I just found this site yesterday so we are I'm the same boat. If you have any questions about any medicines or surgeries feel free to ask. I have had crohns for a long time and can be useful for information.


----------



## SarahBear

Welcome, Alicat and Danielle!


----------



## rygon

Merry Xmas all, hope you all have a great day and get to eat some, if not all of the food


----------



## Sassycat

Whoa! Just found this group. I've been looking for other young people with crohns. It always seems like I am the youngest person in the clinic (I'm 21). Oh, and Merry Christmas (or Happy Holidays) to everybody. Not so much for me- I at allll the food and I am feeling it now! (But it was worth it)


----------



## smack116

As someone mentioned earlier, it's hard having a disease that people mostly think old people have. It's hard to talk about hemorrhoids and colonoscopies with 20 year olds! Even with close friends, it's sometimes hard to talk about it without thinking you're giving TMI. Having this support group really makes me count my blessings- some people have it much worse than me.


----------



## Alicat44

I'm having my 4th or colonoscopy in the past year again in January.. I'm extremely nervous that my doctor is still going to find just as bad inflammation as last time  I really need some encouraging words and mabe if anyone has any tips to making the miralax Gatorade prep any easier?


----------



## rygon

Nappy cream for applying after every toilet visit. Wash using a shower head rather than wiping as its better for your skin.

Not tried Miralax before (or gatorade for that matter) but the moviprep I had to drink 2ltrs of the stuff. It was just get it down as fast as possible and make sure I had a book nearby


----------



## Alicat44

Do you have any tricks to getting the stuff down? It's the hardest part for me without gagging or throwing up, yuck right?


----------



## JustAYoungLad

You get the MiraLAX and Gatorade to mix don't you? I'm not sure what brands of cordial you have in the states, but in the UK we have Robinson orange cordial squash. Adding a shot of that to the mix can make it taste a bit better.


----------



## Alicat44

Yeah I mix a big thing of miralax into a jug of Gatorade and drink it over the day. Cordial? Like a flavoring?  That might actually work, I can try it


----------



## rygon

If it's the taste try holding your nose (you will only be able to taste the 5 tastes), or have some strong smelling stuff like menthol near you nose to mask the taste


----------



## Alicat44

Okay i shall try it, I'm terrified of finding out bad news but it happens :/ do you have any other advice on helping crohns? I figured id ask to soak up as much info that I can.


----------



## DamnitCrohns

When i had my first (and only, so far) colonoscopy i threw on some loud club music and pretended I was downing a bad tasting alcoholic drink. Worked for a few glasses lol.


----------



## Alicat44

Lmao that might actually work x) too bad you can't mix in some alcohol and forget the whole thing right?


----------



## rygon

Have you actually heard clubbing music these days.. I feel like retching even without a drink


----------



## JustAYoungLad

Alicat44 said:


> Lmao that might actually work x) too bad you can't mix in some alcohol and forget the whole thing right?


and then waking up with a sense of regret and a sore bum

sounds like a normal night out


----------



## Danielle210492

Aiicat I used a black current squash and it was much more pleasent x


----------



## Magnolia24

Having peppermint tea ready to drink after the prep helped me with the nausea....At least a little...


----------



## Lottie93

Hello,
I have also just discovered this group and have been looking for somewhere I can talk to people around the same age range as me.
I am 20 years old and was diagnosed when I was 19 and at the end of my first year at university. I struggled with symptoms for a while but never thought I would have crohns so the diagnosis was a shock especially when I knew no one else my age with this condition.

I have had great support from my friends and family. Without my friends I don't know where I would be right now, they help normalise things for me. Although they can't relate directly they try their best to help me out on whatever I need, I can talk about any one my symptoms (even the gory ones) to them without feeling embarrassed!

However, It would be really nice to talk to people who are experiencing what I am and can give first hand advice!  So I am thrilled I've found this group 
Xx


----------



## Alicat44

Does anybody experience a fever of 99 all the time? I've been dealing with it
For awhile /:


----------



## JustAYoungLad

Alicat44, you might have a bit of a bug? If your on any medication that lowers your immune system like azathioprine, you can have an increased chance of picking up bugs.


----------



## Alicat44

Justayounglad, I've been dealing with a low fever for awhile on and off, it's hard to tell if it's from being sick or my crohns? I have felt like I have had a slight cold but idk if that would cause a fever do you? And I am on Humira


----------



## JustAYoungLad

It can be to do with both really, Crohn's has given me high fevers a few times.

A small story to share, one time I was in hospital and my temperature sky rocketed. They thought I might have had sepsis, a bug in the blood from the IVs. I had a temp of 38.5C (101F), high heart rate, 120. I was started on really strong antibiotics and blood cultures sent off to find out what bug I had. 24 hours I was back to normal, blood cultures showed no bug. The consultants presumed it was Crohns related, that Crohns caused the fever, they said it can do that.

I've been on Humira for about 2 years. Stopped recently as I had to go for surgery unfortunately. But while on Humira I did get a few more bugs than normal.

If you have a fever for more than a couple of days I would go your local doctors. How often do you get your bloods checked?


----------



## Alicat44

Wow that's crazy, I used to get super bad fevers to where you shake when I was in the hospital a long time ago. I think it might be the Crohn's unfortunately because It's been happening a lot lately /:  if you don't mind me asking what kind of surgery do you have to have? I get blood tests like every month or so


----------



## JustAYoungLad

I had a laparotomy resection (basically they cut me open through the abdominal wall, as a oppose to using keyhole surgery). It was to remove my crohns that had got really bad and caused a total blockage. So then there was nothing that medication could do, it was entirely a pluming issue, a kink in the hose pipe.


----------



## Alicat44

I'm sorry, that really sucks /: was the Humira helping you? How much were you on ?


----------



## JustAYoungLad

Lottie93 said:


> Hello,
> I have also just discovered this group and have been looking for somewhere I can talk to people around the same age range as me.
> I am 20 years old and was diagnosed when I was 19 and at the end of my first year at university. I struggled with symptoms for a while but never thought I would have crohns so the diagnosis was a shock especially when I knew no one else my age with this condition.
> 
> However, It would be really nice to talk to people who are experiencing what I am and can give first hand advice!  So I am thrilled I've found this group
> Xx


Hello! and Welcome!


----------



## JustAYoungLad

Alicat44 said:


> I'm sorry, that really sucks /: was the Humira helping you? How much were you on ?


I was on fortnight injections, then moved to weekly to be more aggressive against Crohn's. How often are you taking Humira?


----------



## Alicat44

I used to be on 1 injection every 2 weeks now it's once a week, I'm scared there going to put me on a shot twice a week because I've been feeling shitty. Hopefully there's another solution


----------



## JustAYoungLad

Sorry using my British words, fortnight = two weeks. I don't think they will increase your injection beyond one every week. You can increase the strength though, they come in 40mg and 60mg liquids. Do you think you are you feeling poor from Crohn's flaring then?


----------



## Alicat44

Haha it's okay I was wondering what you meant,  I think I'm on 40 mg right now? Yeah, I had a colonoscopy in October and it was pretty bad .. And so they put me on 6mp with my Humira to try combination therapy and I'm starting to feel sick :/ I've also been put on this antibiotic xiafian recently


----------



## JustAYoungLad

Alicat44 said:


> Haha it's okay I was wondering what you meant,  I think I'm on 40 mg right now? Yeah, I had a colonoscopy in October and it was pretty bad .. And so they put me on 6mp with my Humira to try combination therapy and I'm starting to feel sick :/ I've also been put on this antibiotic xiafian recently


I'm sorry . They are powerful drugs. Just one of them drugs on their own can cause sickness as a side affect. After taking my weekly humira I would feel nausea for the next day or so.


----------



## smack116

How does everyone deal with the temptation of drinking at parties? (assuming alcohol hurts your Crohn's)


----------



## sfgirl

I usually just have a glass of wine because it doesn't make me sick. To avoid the hard stuff I just remind myself how sick I got and how much pain I was in the one time I tried it.


----------



## valleysangel92

smack116 said:


> How does everyone deal with the temptation of drinking at parties? (assuming alcohol hurts your Crohn's)


I simply just remember what will happen if I do drink,  generally alcohol doesn't upset me (as long as I avoid gluten)  but if I'm having cramps it will make them worse,  if I'm taking medications then I always try to check with the prescribing doctor or here if I know that there is a social event coming up where I may like to drink.  I'm not generally a big drinker anyway , I drink maybe 5 Times a year on average.  The key thing is moderation,  don't go downing 6 pints at one time. Most people seem to find things like wine and spirits like vodka to be easier on the system than beers and ales so maybe that's a good place to start.  Also,  non alcoholic beers are available in a lot of places,  and you can even get gluten free larger and beer if you think that may be better for you.  

In addition,  I find eating just before or while I'm drinking helps to keep my tummy settled.


----------



## JustAYoungLad

I went out NYE and just drank soft. I was probably the only one in the whole bar drinking soft. I dont mind though, I still enjoyed it and had a fresh New Year's Day.


----------



## nini_mini

Alicat44 said:


> I'm having my 4th or colonoscopy in the past year again in January.. I'm extremely nervous that my doctor is still going to find just as bad inflammation as last time  I really need some encouraging words and mabe if anyone has any tips to making the miralax Gatorade prep any easier?



To the Miramax/dulcolax prep. I personally cant taste it. Unless I mix it with yellow Gatorade then its horrible tasting. I usually mix it with apple juice and let the miralax dissolve completely and it literally tastes just like apple juice. It might help to have the drink your mixing it with to be cold or chilled. I noticed i can taste it more when the drink is warm. Also, I live in sunny Florida too!


----------



## FrozenGirl

Yay for this group. Every time I see my GI I am the youngest one there. Feels rather awkward.


----------



## hingrum

Has anyone ever had a iron infusion?  My hemoglobin has dropped/is dropping and I do not respond well to oral iron supplements.  The make me so sick!  I read that you can have flu like symptoms for up to three days afterwards.  Has anyone gone through one of these infusions and did you have any side effects?


----------



## nini_mini

hingrum said:


> Has anyone ever had a iron infusion?  My hemoglobin has dropped/is dropping and I do not respond well to oral iron supplements.  The make me so sick!  I read that you can have flu like symptoms for up to three days afterwards.  Has anyone gone through one of these infusions and did you have any side effects?


Hey hingrum! Yes Ive had an iron infusion before while in the hospital, I can't tolerate the oral ones either makes me throw up. Anyways when I got mine the only real side effects I had were feeling like I got hit by a truck for a couple of days and my pee was orange and my stool was really dark because they pumped so much into me. Looks kinda cool in the bag its dark but yet an orangey red color. Oh I had a weird taste in my mouth the day it got infused but that's it. It was well worth it.


----------



## nini_mini

FrozenGirl said:


> Yay for this group. Every time I see my GI I am the youngest one there. Feels rather awkward.


Yes!  I am too. It feels a little unnerving sometimes because they all look at !e like why are you here? :ybatty: :ylol:


----------



## FrozenGirl

^Yeah. Kinda like, trust me not my choice to have this and thus be here. Sometimes I think they are glaring at me for potentially adding to the wait time, even though I have to see my gi as much as they do I'm sure.


----------



## JustAYoungLad

hingrum said:


> Has anyone ever had a iron infusion?  My hemoglobin has dropped/is dropping and I do not respond well to oral iron supplements.  The make me so sick!  I read that you can have flu like symptoms for up to three days afterwards.  Has anyone gone through one of these infusions and did you have any side effects?


I used to get terribly sick from iron tablets.

I've had 3 iron infusions over two years, and they are really great. You leave the hospital feeling a new person. The amount of iron you get will depend on your weight and target hemoglobin. To give you an idea, my weight was 45kg and my hemo was 5.

The iron bag was about 1000ml for me, I think I had 100ml very fast over 15 minutes at the start of each infusion to check for any immediate reaction, and the remainder over 8 hours. I didn't experience any inital reaction. I believe they are looking for fast bp, high temp, problems breathing. A reaction the iron is quite rare but it needs attention. 

I did experience a heat wave, it felt like all my blood vessels where opening up. I could see the blood in the veins for the first time. After about 2 hours into the infusion I was sick a few times. It did pass though. I had no side effects upon finishing the infusion.

It'll definitely make you feel better in the end! Best wishes!


----------



## nini_mini

I couldn't have said it better justayounglad


----------



## nini_mini

Frozen girl yes! Haha they just awkwardly look at you... Or they sleep since its so cold in there. I feel like I live at Florida medical between all my GI and rhumey appts.


----------



## hingrum

Thank you all for the advice with the infusion!  I am excited to feel a bit better!  Hopefully the side effects won't be too glad.  I am glad I know what to expect now.


----------



## nini_mini

I hope it goes well for you!


----------



## FrozenGirl

Nini, I wish I could sleep while waiting. Though with my cold it would probably be rather unpleasant for everyone else as I cough and sniffle all over myself, lol.


----------



## nini_mini

Oh my god. I literally did that the last two visits I had because bronchitis and couldn't breathe worth a crap and my nose and throat were going off on there own. and because its like 40° in there I turn ghostly white and kinda blotchy and my nails turn purple and my bp gets super low like I should be dead. Its quite the sight lol I look like I'm gonna faint. And then my bp goes back up when I meet the dreaded scale haha :ybatty: ale:           :mademyday:


----------



## FrozenGirl

Haha. Aww. Glad you are better now.  Oh the dreaded scale, lol. Me and it seem to have a disagreement. It says whatever I don't want it to.


----------



## nini_mini

Same here, I feel sometimes that the GI and rheumy scales are worse than the one at home. Theyre always higher. Then my GI thinks I'm doing good because I'm gaining and I remind him his scale shows higher than mine and then I think he feels disappointed by it haha oh well. The rheumy scale I'm okay with being higher because then I get the full 10mg of remicade unlike the 7.5mg I got last time because my weight was under the "10mg limit" ugh lol


----------



## Rose

Just a young lad,

Do you know what meds put you in remission and were you on any preventive/maintenance meds the ten years you were in remission. I hope you are feeling better now. Congrats on graduating.


----------



## JustAYoungLad

Rose said:


> Just a young lad,
> 
> Do you know what meds put you in remission and were you on any preventive/maintenance meds the ten years you were in remission. I hope you are feeling better now. Congrats on graduating.


When I was 11 I had 5-6 doses of Infliximab (trade name, Remicade) and then I was in remission for 10 years. 5 of them years with no medication because they was nothing there to treat / maintain. Them 10 years were great, I went up to 12st, with no symptoms.


----------



## Rose

They never gave you prednisone? I am interested on how  each doctor treats   initial/subsequent flares differently.. I am so happy that you were in remission for that long and hope you can go another ten years. My son has crohn's colitis and we are battling to get him into remission. What med do you take now? Thank you so much.


----------



## JustAYoungLad

Yes I did have Predinsolone, its a bit rough, but I can remember most of it, in order of treatments:

10-13 years old
Colonoscopy confirmed crohns
Prednisolone (4-6 weeks)
Ensure liquid diet (2 months)
azathioprine (6 months)
Infliximab (8 weeks)

14 - 23 years old in remission

23 - 24 years old
Ensure (2 months)
azathioprine (8 months)
Humira (18 months)
Crohns tissue healed, leaving behind scar tissue causing a total blockage
CT/MRI confirmed stricture
Surgery
Now (3 months post op)

Prednisolone caused bad side effects for me when I was a kid, it was horrible, so I avoided them the second time round. Also I had Humira this time as the doctors said the body can reject Infliximab after using it for a period of time. So to avoid that possibility I ws give Humira which is a drug with similar properties.

Wsh your son the best! Hope it gets better for him, and feel free to ask any questions about my experiences.


----------



## Rose

Just a young lad,
Thank you so much for sharing your med info. and support. It means more to me than you will ever know. Hope all is well with you, too. I have switched gastro doctors from pediatric to adult. My son is 16. Hopefully this doc will help me get him on track. Do you follow any special diet?


----------



## Alicat44

I'm feeling really low right now, I can't shut off the worrying about my disease. I had a colonoscopy today and it went well, but I have to meet up with my doctor next week to discuss my options.. I'm so scared and need someone to talk me out of it..


----------



## smack116

All you can do is try your best to take care of your body... no amount of worrying will change your disease. It's all about what you eat, what you drink, and what you think! Hope for the best. Plenty of people go into remission all the time with this disease. Try yoga, meditation, and seek a counselor if you can't seem to shut off the noisy thoughts. They can give you some tips and tricks.


----------



## Alicat44

Thank you smack116, I think I need to really push myself to eating healthy and doing good for my body. I just have a disbelief deep down inside that it would help but I'm trying to stay positive. Do you recommend any vitamins or tricks? I also scheduled my first appointment to see a psychologist next week and I've had this disease since 2007. It feels like so long.. Lol


----------



## Essieluv

Alicat44 said:


> I'm feeling really low right now, I can't shut off the worrying about my disease. I had a colonoscopy today and it went well, but I have to meet up with my doctor next week to discuss my options.. I'm so scared and need someone to talk me out of it..


Oh I feel so bad for you hun! I just want to give you a hug:ghug: I know it sucks, but you will get better one day and your life will not always revolve around IBD. There will be good times, yeah? Keep your chin up and know that you are most certainly not alone in this fight. You can talk to us anytime, ok?


----------



## smack116

Alicat44 said:


> Thank you smack116, I think I need to really push myself to eating healthy and doing good for my body. I just have a disbelief deep down inside that it would help but I'm trying to stay positive. Do you recommend any vitamins or tricks? I also scheduled my first appointment to see a psychologist next week and I've had this disease since 2007. It feels like so long.. Lol


Yeah, I know what you mean about the disbelief. I think your psychologist will help. Deep breathing helps me a lot with stress and negativity. So does getting out in nature and hiking. 

I also believe that coffee, overeating, alcohol, cigarettes, and lots of sugar are really bad for my symptoms. It's noticeable. But everyone is different.


----------



## Amaze

Im in my early 20's.. sign me up! haha


----------



## Amaze

this disease fkn sucks. problem after problem. it never ends.

Im tired of hiding in my room from my once glorious social life. Im a former shell of myself.

i hate going to doctors and being told what am i doing there "your too young to be here"


----------



## Magnolia24

Hey fellow young'ns. Feeling a little bleak.. Just wanted to say hi to people who might get it. I'm currently in NY visiting my boyfriend (long distance relationship...Already a strain...). I started prednisone right before I left and I think it's made me sort of depressed... or just sort of "off" feeling...And then being in an amazing city with my amazing guy and just ending up thinking about my illness most of the time is pretty depressing too. I guess I feel sort of envious, knowing when I leave he goes back to this vigorous, healthy academic and social life...And I'll go home and just feel like a bit of a mess. And jealousy is a pretty gross feeling. 
Anyway, a lot of this trip has been wonderful. I'm just having a moment.


----------



## Essieluv

Magnolia24 said:


> Hey fellow young'ns. Feeling a little bleak.. Just wanted to say hi to people who might get it. I'm currently in NY visiting my boyfriend (long distance relationship...Already a strain...). I started prednisone right before I left and I think it's made me sort of depressed... or just sort of "off" feeling...And then being in an amazing city with my amazing guy and just ending up thinking about my illness most of the time is pretty depressing too. I guess I feel sort of envious, knowing when I leave he goes back to this vigorous, healthy academic and social life...And I'll go home and just feel like a bit of a mess. And jealousy is a pretty gross feeling.
> Anyway, a lot of this trip has been wonderful. I'm just having a moment.


Sending you hugs!


----------



## BayAreaChronie

Just figured out the support group pages. 
So glad to have found this forum. 
Attended one support group and it just wasnt for me. Not really a young crowd and just felt out of place. 
Been using this forum and have probably read 15 different books at this point about Crohns and IBD since I had never heard of this disease before up until diagnosis. 
Will definitely be using this forum a lot.


----------



## Amaze

im so scared, i found a little hole near my rectum and my GI mentioned surgery and im freaking the fk out.


----------



## nini_mini

Amaze said:


> this disease fkn sucks. problem after problem. it never ends.
> 
> Im tired of hiding in my room from my once glorious social life. Im a former shell of myself.
> 
> i hate going to doctors and being told what am i doing there "your too young to be here"


I'm the same exact way.  I feel ya. To the drs. Thing that and the "your doing fine" speech. :ybatty:


----------



## DamnitCrohns

Feeling pretty down today. Had a job interview on friday for a job that is IDEAL for me, and exactly what I was after and it seemed to go really well. 

But on tuesday I have an ultrasound and CT scan to investigate a fistula i have between my intestine and bladder (Have had poop in my urine many many times in the past couple of months so it's definitely there). I was jjust reading about the procedure for treating this and apparently it's a bowel resection at best. I'm really scared that this is going to get in the way of the rest of my application process and taking the job if they offer it to me.

If that happens i'll genuinely be devastated because i havnt seen any jobs like this anywhere else and i really think i have a good chance of getting it. Except for the fact that my good friend, crohns disease, is going to do whatever he can to fuck it up for me.


----------



## Amaze

@DamnitCrohns

I got denied for a career position I been fighting for for at least 5 years because of crohns. I still cant get over it. hopefully you have better luck than I did.


----------



## DamnitCrohns

Amaze said:


> @DamnitCrohns
> 
> I got denied for a career position I been fighting for for at least 5 years because of crohns. I still cant get over it. hopefully you have better luck than I did.


Damn that sucks, i'm truly sorry to hear that Amaze. I really hope that somehow it doesn't get in the way for me but I can't see that happening. I almost feel like it would be better if I got turned down for the job rather than being offered it only for me to end up having to reject it.

Crohn's has done such a great job of destroying all of my plans in life ever since it started.


----------



## nini_mini

Glad im not alone on the job front thing. My crohns has decided to be very super active and surgery didnt even stop it from flaring right after. Ive lost many job opportunities because of this blasted disease.


----------



## Amaze

@DamnitCrohns 

"I almost feel like it would be better if I got turned down for the job rather than being offered it"

- I was wishing the same thing.The worst thing about my situation was that I received a denial notice and my Crohns was listed as the reason why. 



@nini_mini
- I hear that, been denied and/or I refused to take jobs because of this dang disease. My family underestimate my disease and always get on my case for losing my job recently and not being able to find another. Now I really do not know what to do with my future :/


----------



## nini_mini

Amaze. Im literally in the same position.  I jist dont know what to do. I havent held a job in a couple yrs because of it and if I do its only for a few months tops because ill flare and wont be able to work. And now im recovering from surgery and I keep flaring so I really cant do anything. I want to be a nurse and move out I just dont know how ill do it, its aannoying and a challenge.


----------



## JustAYoungLad

Amaze said:


> @DamnitCrohns
> 
> "I almost feel like it would be better if I got turned down for the job rather than being offered it"
> 
> - I was wishing the same thing.The worst thing about my situation was that I received a denial notice and my Crohns was listed as the reason why.
> 
> 
> @nini_mini
> - I hear that, been denied and/or I refused to take jobs because of this dang disease. My family underestimate my disease and always get on my case for losing my job recently and not being able to find another. Now I really do not know what to do with my future :/


They rejected you because you had Crohn's? Unless it was something specialised, were you need to be really healthy for the job then that's not fair!


----------



## valleysangel92

Hey guys, in the same position here.. 

Crohns made me drop out of uni after I worked really really hard to get in.. Because of the symptoms (undiagnosed) I found concentrating at school/college (kind of like our high school but non compulsory and you can do a wider range of courses and get diplomas etc) but i still managed to pass every exam and every piece of coursework and then I had to take a year out because I was supposed to be having major jaw surgery which didnt happen. I finally got there.. was starting to settle in, loving my course, making friends, getting the coursework done when everything went belly up (literally). I ended up being admitted to hospital 3 times, and then having to leave, just 3 months after starting.. I was so gutted. 

Then, last summer, after surgery, I had a shot at going back, my uni had held a place for me, I got all the way through to a health assessment.. and BAM! failed.. and I have been signed off work ever since, my doctors are giving me what we call a rolling sick note, where every month they sign a form to say Im not fit for work. This will keep going until I see a rhuematologist and they tell me if i can/cant start working and if i can, what my limitations will be. 

I should point out.. the course i was doing was a paediatric (childrens) nursing course and you really do need to be fit, your on your feet 12-16 hours a day running around. 

I have never had a job, every one I've applied for has a health questionnaire that I answer with at least 75% "yes" and I never hear back.


----------



## SarahBear

I haven't been denied a job because of my Crohn's, although I did end up turning down one that I was offered because of it.  My last employer was aware of my condition before I was hired as he was a family friend, so he was decently understanding.  My current manager was told about my Crohn's before I was hired (apparently one of my references told her… a little confused as to why…) but it turns out she has it as well (although she's actually never had symptoms from hers and only found out because she was diagnosed with another condition as well).  So far, it hasn't been an issue.  Most of my problems at work are fatigue-related, but I've managed to do okay.  Unfortunately, my fatigue and my apparent arthritis seem to be getting worse, so we'll see how things go.

I'm also worried about school.  I might end up taking this semester off, because I'm in a tricky financial position and would have to cut down my hours to go back (plus I'm really, really late in scheduling - I need to decide this by tomorrow), which would have a huge negative impact.  However, I'm already years behind where I should be and the idea of another semester of no progress really bothers me.  I'm probably on academic suspension and have had my financial aid revoke anyway, though - I'm too afraid to check.  My school is extremely uncooperative and difficult to get ahold of (and has terrible professors), so while some failed classes are my fault, some are theirs as well.  I need to transfer to get the degree I need, but unfortunately, I'll also have to move to do that… which I can't do because of my financial situation… so at this point, I'm not sure that a semester off is really what's hindering me.


----------



## nogutsnoglory

I am scared about starting a new job with the unpredictability of my flares and mainly my severe fatigue and dizziness. I wish I could be my own boss or work from home but there aren't too many options there that are suitable for me. 

Mostly I just feel that you guys can probably relate that I feel like crohn's has robbed me of my youth. I got diagnosed in college just when I started to get the hang of things and enjoy myself and ever since it's been downhill. I am envious of others who can go out eat, party and live life without thinking twice about the consequences. I feel like every minute of my day is calculated and mostly can't do much of anything I would like to. I'm a young adult prisoner to my crohn's


----------



## Cross-stitch gal

I've been with my current employer for 13 years now.  However, I've had many different managers, people in charge, fellow employees, etc.  My management and everybody who needs to know about my IBD knows about it.  However, I don't tell anyone who needs to know until after they've been working with me for awhile.  This way they'll know me for how I work, not me because of my IBD.  

I have had trouble during work with my flares.  Got sent home once because I was in so much pain.  But, for the most part don't let my IBD keep me from my job.  All I can do is my best and that's all they ask.  My fellow employees won't give up on me till I give up on myself.


----------



## FrozenGirl

I've had my current part time job for a year and a half. I work about 20 hours a week. I told one coworker about my UC (I was in the worst of a flare and in constant pain at work, which despite my best efforts is tricky to hide)  I told my manager only when I needed to justify asking for Christmas Eve off when I had previously said I would work it, due to a last minute MRI. Even then I just said I had a 'chronic autoimmune disease' wasn't specific.


----------



## DamnitCrohns

Sorry to hear that you guys have also been struggling job-wise.

I passed the interview and now have a follow up interview on thursday morning. My ultrasound and CT scans for the bowel-bladder fistula are tomorrow. Will be interesting to see how this week plays out...


----------



## nini_mini

-Job note. My dad texted me if I could do some manual labor for the next three days as he needs something done at his work. 

-Side note. He asked me even though im flaring and it feels like rocks and razor blades going through (my resection site and whats left of my ascending colon and part of my descending and sigmoid colon) pretty much both my sides going in L formations facing each other.  And he knows im flaring because I spent most of yesterday complaining about it. :ybatty: :yfaint:  
-Back to the job note. Depending on what it is he needs done I might muttle through a few days of it. But if its something legit im not sure I can handle an entire day of manual labor forom 830 to 5. Or im going be In serious pain all day and will be taking many breaks either way. 
-any thoughts on this idea? oo: :voodoo: :runaway:


----------



## DamnitCrohns

@nini_mini - Did you end up doing it? manual labour type work would be awful for me now. Sitting at a desk ad working is fine for me - the pain and fatigue affect me but can largely be ignored. But even the idea of waiting tables or stacking shelves sounds like hell for me, nevermind tough manual labour.


Question for the young adults of the forum:

Do you live with your parents? If so what are your thoughts/plans with regard to moving out? and if not, when did you move out and how has your crohns affected you in this regard?

I've only finished uni recently and have fortunately found a job that is close to home so theres no need for me to move to another city etc. Within this year i'd like to have moved out though as theres not much to do around here - a small village about 35 minutes from the city (by train) - and my social life has been minimal recently with the combination of getting crohns, living with my parents, and my friends who live around here all still being at their various universities around the country.

But the prospect of moving out has become less attractive due to this illness - low energy, pain, discomfort etc are one thing at home where my mum can do things for me like washing my clothes, even cooking and shopping etc but doing all of these things for myself when i'm ill just sounds horrible. I'm not sure if that's as lazy as it sounds or if crohns is a reasonable excuse to think that.

Let me know your thoughts guys and girls.


----------



## FrozenGirl

I am in uni living with my parents. I'd like to move out in the next few years. The prospect of being alone is really scary though. My parents do a lot for me and as someone recently diagnosed I wanted the support,hopefully when I'm out of flare I won't need the support.


----------



## Cross-stitch gal

I left home permanently at 21 when I got married.  Throughout these 14 years there have been times that it's been a roller coaster ride with my IBD.  But, admit that I've never been alone other than maybe a night or two off and on when my husband has been working away from home.

Don't blame you for wanting to be on your own and independent.  That's a wish everyone wants.  But, you'll know when the time is right for you. xxxx


----------



## SarahBear

I do not live with my parents.  Unfortunately, that isn't an option for me.  I moved out when I turned eighteen.  I stayed with my boyfriend at the time for over a year.  When that relationship ended, I moved in with a friend, who then became my current boyfriend.  Because my work hours are limited due to my health, I can't afford to live on my own.


----------



## nini_mini

@damnitcrohns- no I did not. My flare has been knocking me dead this past week to the point where im not eating a lot and I slept 90% of today because I just feel like shit, my joints are killing me which makes me not want to move and my flare is making me tired and in pain so Ive been on tramdol and half a hydro today. Oh and I haven't taken my pentasa this past couple weeks because my heart palpitations are going effing nuts so I'm not gonna add to it. Lol its been a very long painful two weeks. 
   Also I live with my rents. Sigh. I have plans to move out but I can't until I get better and be able to hold a job for longer than a couple months. Lol and ha! My mom helps do my things too when I'm crappy. Wash clothes, shop, etc. So yeah I feel its a reasonable excuse, and well we feel crappy and can't do it ourselves.


----------



## Weatherwax

Post deleted


----------



## JustAYoungLad

Weatherwax said:


> Hey guys
> 
> I'm 23. I graduated from uni with a First in summer 2012, feeling fine. In the autumn I got a place on a really good graduate scheme, got rid of a terrible cheating boyfriend I had put up with for the past three years and moved into my own flat. In January 2013 I started dating the most amazing man who I had met at work - like, the kind of relationship where from the first time we went out I felt like I'd come home, like he was the person I was supposed to be with all along. I remember my friends saying they'd never seen me like that about anyone. I hadn't had a great life up until graduating (difficult relationship with parents in my teens which caused self-confidence problems that took a long time to shake off, a run of crazy housemates at uni and other stuff)  and I was so happy that I finally had everything I'd worked hard for for years. Ready to have a career, travel, do everything I had always wanted to do and never been able to.
> 
> Then I started getting ill. A few months after I started dating my partner, I was suddenly getting screaming stomach pains, D 3-10 times a day, fatigue that meant I couldn't walk to the corner shop without needing a nap, being sick every five minutes, fissures and fistulas, all the usual fun. I spent the next year in and out of GP surgeries and hospitals, trying to find out what the hell was wrong with me. Eventually I was told over Christmas 2013 that I had suspected Crohns - my gastroenterologist is '99% sure' that's what's wrong with me. I had a CT scan last week to confirm and should be starting steroids next Tuesday.
> 
> I guess many of you must feel the same way - so frustrated and angry that this disease has ruined everything when you've only just started out in life. I can't do my best at work and show what I can really do, because I'm off sick half the time and when I am in I spend a lot of my time too tired or pained to concentrate. I can't go to long meetings for the usual reasons. I can't learn to drive, or travel, because I don't have the energy - or the money since I haven't been able to progress from the graduate scheme I started last September. I now live with my boyfriend, not because we felt it was the right time to move in together, but because he saw that I was not coping living alone and trying to pay for my flat when I was working reduced hours due to illness. He has said to me that he feels we've taken things a bit too fast, even though he still loves me, and I know seeing me so ill is stressing him out. I don't feel attractive because I'm absolutely stick thin, have dark circles under my eyes, fistulas and other gross things galore, pale crappy skin and half my hair has come out, which has affected our intimacy.
> 
> I feel guilty for stressing him out and like he was sold a relationship with someone fun, chatty, pretty and into all the same activities as him, and he's stuck with a boring person who never looks good and spends all their time sleeping or being miserable. I feel so angry that this disease has come along and snatched everything away just when I thought I had built something amazing.
> 
> Sorry for the rant, but I needed to vent to someone and I thought you guys would understand more than anyone IRL.


I feel your pain. That really sucks!  - On the positive you've found someone who really loves you. Hopefully you can find the right treatment and be on the mend soon!


----------



## Alicat44

Weatherwax- I'm sorry your going through all of this, but you have a to stay positive. That's the most important thing! I was diagnosed in 2007, and have been through hell trying to get myself healthier, but I finally have realized it's nothing to be embarrassed about or ashamed of. I got diagnosed in a critical part of My life when boys were just starting to be a part of it. I didn't even hit puberty till I was in 9th grade, and that only happened from putting a G tube down my nose into my stomach by myself so that I could get nutrition to grow. But anyways, my point is that you can never give up. You have to find yourself a doctor you really trust, you can't be afraid to take risks with certain medicines(every new one I've tried has helped more then hurt me), and take care of yourself. Your partner will understand, your going to get better, you may feel unattractive now but it is only a phase. If your partner doesn't understand your better off without him.  I'm here if you have any questions or just need someone to vent too


----------



## DamnitCrohns

@WeatherWax I can completely relate to having crohns get in the way when life seemed to be going in a great direction. I got sick 1 month after i finished my final year at uni (if theres one thing im thankful for, its that it didnt come a month earlier) - I had an awesome gap year planned and everything was laid out perfectly.

Instead I'm living with my parents, working, but having almost no social life whatsoever for various reasons, crohns being one of them. And after about 6 months of being ill, i still dont think i've fully accepted that this is a permanent part of my life now.

I feel like things can improve with time though and we'll be able to get our lives back on track, or at least close to the track, over time. I still havn't found remission yet but i'm probably going onto azathioprine (imuran) and/or infliximab (remicade) in the next few weeks so hopefully that will sort me out.


----------



## DPIG

Just thought I would say hello, have been reading the forums but not posting until recently.. 

Here is my original post 

http://www.crohnsforum.com/showthread.php?t=60190

hope you are all doing well!

-Danny


----------



## Amanda89

Hi danny, sorry to here you and your mum aren't well.is it just a normal doctors appointment you have on the 4th or is this with your GI?


----------



## DPIG

Amanda89 said:


> Hi danny, sorry to here you and your mum aren't well.is it just a normal doctors appointment you have on the 4th or is this with your GI?


It's with my normal doctor but it will be my first time seeing him.
My old doctor found out he has brain cancer and is no longer practicing.
I will be seeing a GI doc after that 

Hope you feeling good today, nice to meet you!

-Danny


----------



## Alicat44

Has anyone had to do hydrocortisone enemas? How long did it take to see results? And did they make your knees hurt ? Owch


----------



## nikimazur

I'm 25. I've was quite active on this forum up until a year ago. For the past three years, and through four docs, I've been diagnosed three different times with Crohns. I saw a doctor last year who swore up and down I didn't have it, and pulled me off all my meds. Needless to say as soon as I saw a new doc a month ago, and had new scans, colonoscopy and blood work I was permanently diagnosed, and will be starting Humira this week. My first two years of disease were quite mild.

I survived and did well on Pentasa for a few months, then added Entocort. I then joined the prednisone world. I had to switch doctors when I moved, and came across a great GI who was quite conservative... Well maybe too conservative looking back on it. I'm paying dearly now, with very severe inflammation and very active disease. My liver is shot to hell at this point as well, and with starting Humira, will be doing bi-weekly liver function panels. 

Ten years ago I had a traumatic brain injury due to a car accident. I've felt like a test subject for most of my adult life, and have been hesitant to out more crap in my body. At this point I have no other choice. I'm used to being abnormal, used to being the sick girl...my friends and family and even co-workers don't question my bad days, medications, hospital admissions. I've become numb to having a chronic disease. In many ways, I'm so thankful to have such acceptance, yet it still can get frustrating. 

Some days it's hard differentiate between TBI and Crohn's issues..it's a constant cycle. Being 25, the only real issue that I've had socially, is the ability to date. Even at 25, I've experienced more pain, more issues then some do in a lifetime. I come with 'baggage' . Emotional, physical baggage and in your early 20s not many people want to deal with it.


----------



## DPIG

nikimazur said:


> I'm 25. I've was quite active on this forum up until a year ago. For the past three years, and through four docs, I've been diagnosed three different times with Crohns. I saw a doctor last year who swore up and down I didn't have it, and pulled me off all my meds. Needless to say as soon as I saw a new doc a month ago, and had new scans, colonoscopy and blood work I was permanently diagnosed, and will be starting Humira this week. My first two years of disease were quite mild.
> 
> I survived and did well on Pentasa for a few months, then added Entocort. I then joined the prednisone world. I had to switch doctors when I moved, and came across a great GI who was quite conservative... Well maybe too conservative looking back on it. I'm paying dearly now, with very severe inflammation and very active disease. My liver is shot to hell at this point as well, and with starting Humira, will be doing bi-weekly liver function panels.
> 
> Ten years ago I had a traumatic brain injury due to a car accident. I've felt like a test subject for most of my adult life, and have been hesitant to out more crap in my body. At this point I have no other choice. I'm used to being abnormal, used to being the sick girl...my friends and family and even co-workers don't question my bad days, medications, hospital admissions. I've become numb to having a chronic disease. In many ways, I'm so thankful to have such acceptance, yet it still can get frustrating.
> 
> Some days it's hard differentiate between TBI and Crohn's issues..it's a constant cycle. Being 25, the only real issue that I've had socially, is the ability to date. Even at 25, I've experienced more pain, more issues then some do in a lifetime. I come with 'baggage' . Emotional, physical baggage and in your early 20s not many people want to deal with it.



It's hard to read how much you have been through, I'm glad your such a fighter! So do you feel as though the doctor that was too conservative is to blame for any of it getting worse? We are the same age, and while we are going through different things, I am here if you need to talk, feel free to message me. Hope your feeling ok today!

-Danny


----------



## JustAYoungLad

Hi Danny, welcome aboard! We're are all on this terrible adventure together. I wish you the best of luck that your situation improves, I've been right were you are. I can also relate to going to A&E only to get a drip, pain killers and sent on my way (in my early days). It can be frustrating. 

Anyhow, always ask away if you have any questions, I've been through hell the last 2 years. Finally on the up, but in that time I've felt many lows, been on far too many drugs and the recently surgery. I don't let it keep me down though, keep fighting!

PS. Your daughter looks cute. I bet she's a big star in your life!

----------

Hey niki, I know how it feels being so active, 'parties, hobbies, active in sports and then to become so ill. I got I'll straight after my graduation. So I went from a very active uni life to being curled up in agony in my bed for days. It sounds like you've gone through a lot and it's hard to take at such a young age. I've questioned too many times 'why me', but I've gotten past it and accepted this is who I am and I'm going to turn a negative into a positive (some how).

I've was on Humira for 12-16 months. It was so long I can't remember exactly.  It works well. If you have any questions about the drug feel free to ask. Also don't worry about the shopping list of side effects. Be aware of them but get worried about them too much. They have to state every possible side effect legally but they are most rare, especially the life threading ones.

Also you will find someone who likes you for who you are. Everyone has baggage but just in different sizes. You look like a good looking girl, and once your Crohn's gets more in control you'll feel more confident about engaging in more social events and meeting new people. Wish you the best in getting well!


----------



## shena1993

I just turned 21. I was diagnosed with crohns when I was 14. I have not been in remission yet but hopefully I will one day. I'm trying to get into school but it never seems to be the right time. I've been dropped from 2 colleges already because I'm missing to many days. My pain levels have been. Very high lately and I'm always so tired. Is there anyone else who is having problems with school or work because of their crohns?


----------



## SarahBear

shena1993 said:


> I just turned 21. I was diagnosed with crohns when I was 14. I have not been in remission yet but hopefully I will one day. I'm trying to get into school but it never seems to be the right time. I've been dropped from 2 colleges already because I'm missing to many days. My pain levels have been. Very high lately and I'm always so tired. Is there anyone else who is having problems with school or work because of their crohns?


Have you talked to disability services at your schools?  My school has an attendance policy (many don't) so my grade starts going down if I miss more than two or three days.  I'm able to get this waived, so attendance doesn't effect my grade.  If I do miss class, I simply email my professors and they let me know what I missed.


----------



## valleysangel92

Hello Shena

I'm in the UK,  but when I was at uni,  my lectures were very understanding and although they had strict attendance rules for my course,  they did allow me to miss much more time than normal,  including compulsory sessions. All I had to do was email lecturers to let them know why I wasn't there. When I left,  it was a mutual choice,  we felt it was better for me to get things under control away from the stress of uni ( I was on a nursing course,  stressful and physical) and they made it clear that me leaving wouldn't affect future applications to that uni... If you speak to the schools and explain your situation,  you should find that you'll get much better support.  Good luck!


----------



## shena1993

Thanks Sarah. I have tried talking to my teacher but she says she can't do anything about it because attendance is a big part of the class.


----------



## shena1993

@valleysangel92: Thank you. I haven't tried talking to the school. Only the one teacher and she wasn't much help.


----------



## SarahBear

shena1993 said:


> Thanks Sarah. I have tried talking to my teacher but she says she can't do anything about it because attendance is a big part of the class.


Any school should have a disability services office.  You can contact the main office and ask who you need to talk to.  They just need documentation proving you have a medical condition.


----------



## Aphrodite_x

Hi everyone 

Been using the forum a while now but just came across this support group! It will be nice to speak to people the same age going through the same things.

I'm Kelly, 26 yo female and was diagnosed around this time 4 years ago. I was lucky in a way, my symptoms were tummy pain, dreaded D, flushes, nausea etc. I went to my gp's office and saw a student doctor, who knew what it was straight away and immediately started me on 40mg pred, and referred me to a GI. While waiting on the appointment, the symptoms came back bad and i was admitted to hospital for the first time, where i had a signoidoscopy and was diagnosed officially.

After more pred, i started on aza. They worked, so well in fact, that after 2 years i stopped taking them. Then surprise surprise i got ill again. This flare has lasted now since last April. I tried to start back on Aza but this time it didn't work. I have been on pred now for 10 months. Wish i could take it forever as its the only thing that makes me feel semi normal.

I had a colonoscopy under GA on 6th January, where my surgeon discovered 5 fistulas (said i had an ass like a watering can). I had two setons placed on rectovaginal fistulas. This has affected me so much. I have been off work since Xmas eve, sex life is non-existent, I'm constantly draining and having to wear sanitary towels. I'm paranoid in case i smell. Luckily enough i have an amazing boyfriend who i live with that really looks after me  doesn't mind my horrible smells, getting up in the middle of the night or being unable to socialise etc. Hes great  i have an appointment with my new GI 25th Feb, hopefully get started on Infliximab soon.

The things that get to me most about having CD - i cant do anything i used to be able to. I watched a tv programme the other night where there were young girls drunk and dancing on a bar, and i broke my heart crying because I'll never be able to do that again (i don't even want to, don't know why it bothered me so much!) 

I'd love to get all dressed up, have a few drinks and go out dancing again. But right now i just cant. My crohns symptoms are ok just now thanks to pred, but my setons are so painful i end up spending most of my time in bed, doped up to the eyeballs with tramadol.

My work are now being ok with all my time off. They were a bit funny last year, but i printed out a lot for my manager and she seems to understand a bit more now. I have also given my immediate team members all the gorey details so they understand a bit more. I don't hide my CD from anyone. As hard as it is at times, i try to laugh and make a joke of it, like smelly farts and poos etc. It stops other people being uncomfortable about it and lets them feel they can ask questions.

That's all for now, think I've written enough lol. If anyone would like a chat sometime just pm me  i might not be any good at advice because i still don't completely understand the disease myself, but I'm a good listener 

Take care everyone


----------



## Luthien

So my doctor has told me to look into taking imuran along with a biologic: remicade, humira, or cimzia. I'm going to research them all, but my doctor said that if I am wanting to have children in the next couple of years I should probably look at cimzia, because it doesn't pass through the placenta. Any advice on which one I should lean toward? Any experience on these?


----------



## rygon

Luthien said:


> So my doctor has told me to look into taking imuran along with a biologic: remicade, humira, or cimzia. I'm going to research them all, but my doctor said that if I am wanting to have children in the next couple of years I should probably look at cimzia, because it doesn't pass through the placenta. Any advice on which one I should lean toward? Any experience on these?


Personally I have no idea, but I'm taking Remicade with no ill effects.

This is the website for the Uk crohns and has some really good info which should help you

http://www.crohnsandcolitis.org.uk/...mation-about-ibd/tests-and-treatments-for-ibd


----------



## shena1993

I have not had the humira but I have had to take remicade and I am currently taking cimzia. The remicade was not so bad except I had to go in every 2 weeks to get the infusion. I'm now on cimzia which I think is much better because I get it sent to me from the pharmacy.  It's kind of like taking a insulin shot, you inject it yourself. It works really well for me.  The only thing is i have to stab myself and it makes me a little sleepy. Lol. 

I hope it works for you!!


----------



## JustAYoungLad

I remember being told Humira has no effects on male fertility, but looking on google, I can't see any evidence to suggest negative or positive effects. It seems there is no research in that area.


----------



## nikimazur

@justayounglad and @dpig thank you both for your kind words of encouragement. I'm. Dry happy to be active again in this community and to finally be able to 'talk' to other young people going through similar issues that I face


----------



## xash08x

Hi everyone! I'm 24 and in my first year of Crohn's. I was diagnosed last May, just one week before starting my first real full time job after college graduation. My manager has been really good about all of my appointments so far. 

I started with budesonide but saw significant weight gain so switched to Lialda and soon added 6mp. I had an allergic reaction to the 6mp though so I am no longer on that. I'm supposed to start Remicade in about a week. Praying that I find some relief with that!


----------



## Alicat44

Has anyone gotten a flare up from putting too much stress on your body? I was doing great till 2 days ago I lifted a bunch of heavy stuff at work and worked super hard.. I'm wondering if that could of triggered it?


----------



## DPIG

Alicat44 said:


> Has anyone gotten a flare up from putting too much stress on your body? I was doing great till 2 days ago I lifted a bunch of heavy stuff at work and worked super hard.. I'm wondering if that could of triggered it?


I know for me it seems like it can for sure, I used to work out pretty vigorously doing 5 days on 2 days off. I always felt like the days I went heavy on my lifts I would trigger something because I would be sick for up to a week after.


----------



## DPIG

xash08x said:


> Hi everyone! I'm 24 and in my first year of Crohn's. I was diagnosed last May, just one week before starting my first real full time job after college graduation. My manager has been really good about all of my appointments so far.
> 
> I started with budesonide but saw significant weight gain so switched to Lialda and soon added 6mp. I had an allergic reaction to the 6mp though so I am no longer on that. I'm supposed to start Remicade in about a week. Praying that I find some relief with that!




Welcome! 

I hope the Remicade helps you to feel better!

:smile:


----------



## Alicat44

That makes me feel better about not feeling so good the past few days. I was feeling great and then I got the same low grade fever that was my problem before, I just didn't know if physical stress could really do that :eek2:


----------



## rygon

I find heavy exercise gets me. I'm ok if I start of small and then build it up so that my body gets used to it, but if I haven't exercised for a while it can hit my hard (bloating, pain Diarrhoea, bloody stools)


----------



## Alicat44

It's so strange, why do you think that causes a flare?


----------



## DPIG

Not sure, something to do with the strain on your body. I guess you could compare it to working out while having the flu.. you would feel much sicker after.


----------



## David

I wish we knew what was causing you folks to feel symptoms after vigorous activity.    It may be related to something like the lactic acid buildup, hormonal, maybe dehydration related, agitation of already inflamed tissue, a combination thereof, or goodness knows.  I was asked to comment but I'm afraid I have no good answers.  Sorry.


----------



## DPIG

David said:


> I wish we knew what was causing you folks to feel symptoms after vigorous activity.    It may be related to something like the lactic acid buildup, hormonal, maybe dehydration related, agitation of already inflamed tissue, a combination thereof, or goodness knows.  I was asked to comment but I'm afraid I have no good answers.  Sorry.


Was worth a shot, and what you wrote is more then I think we knew. So thanks again David.

:smile:


----------



## Alicat44

Thanks David, it's more then I had an idea of. I just know I won't be pushing myself like that anymore, I'm too scared of having a flare.


----------



## David

I think exercise to your ability is extremely important.  It's just about finding exercise that is within your current ability.  Low impact forms like swimming and yoga may be something to explore.


----------



## Cat-a-Tonic

If I may add my two cents on the whole exercise thing - I've had somewhat similar experiences.  I was in remission for 2 years and I was able to exercise pretty intensely that whole time and my guts were okay with it (my GERD not so much).  I was lifting weights mostly, and I like to lift heavy, and I had no trouble.  Then last year a couple things happened.  First, they stopped making Asacol in the US, and I fell out of remission when I wasn't able to find another maintenance med that worked well enough right away.  I still kept up with the weight lifting though and that was fine.  But then I tried riding my bicycle, and that's where I ran into issues.  I started passing blood in my stool somewhat regularly, which hadn't happened before - I was never a bleeder until about May of last year.  (My GI said it's just internal hemmorhoids, but I get all sorts of pain, nausea, general discomfort and unsettled-ness, fatigue, etc when the bleeding happens - so I don't think that's "just hemmies" causing all that.)  

It seems to me that, when I ride my bicycle, it demands an awful lot from my abdomen.  I need to keep my core muscles tight the entire time I'm riding for both balance and steering, and after even a short time of riding that's still a tremendous strain on my abdominal muscles.  I don't know if my abs are maybe pushing/irritating somehow onto my guts beneath?  That's the question mark for me.  I have narrowed it down to using my core too much, that's what often causes a bleeding & feeling yucky episode for me.  Not really sure how using my core translates into causing bleeding, though.  I have found that using a stationary bike is much easier on me, particularly a recumbent-style bike.  I can sit back and just pedal, no need to balance nor steer.  Boring, yes, but safe, and I still get my workout in.  And I can lift weights as long as I avoid working my abs too much - at most I'll do one set of reps on the abs machine and one 30-second plank, that's my limit on a good day (on a bad day I'll avoid any abdominal exercises whatsoever).

Sorry that was kind of long and rambly, but I hope it helps a bit.  Long story short, try to avoid using your abs very much during exercise if my story sounds similar to yours, and bike rides are best to be avoided.


----------



## NatashaChampion

Hi, just wondered of anyone had any insight for me. I just received a letter from the hospital saying:

'that the biopsies taken during my flex sig show inflammatory bowel disease with no granulomata so we would have to describe this as 'indeterminate' inflammatory bowel disease' 

I have got my appointment with the consultant next week but wondered if anyone had any experience with this? 
Many thanks


----------



## David

NatashaChampion said:


> Hi, just wondered of anyone had any insight for me. I just received a letter from the hospital saying:
> 
> 'that the biopsies taken during my flex sig show inflammatory bowel disease with no granulomata so we would have to describe this as 'indeterminate' inflammatory bowel disease'
> 
> I have got my appointment with the consultant next week but wondered if anyone had any experience with this?
> Many thanks


I would ask your Consultant, "Considering one can have Crohn's disease without having granuloma and the importance of determining what form of IBD I have, do you feel it would be in my best interest to have another pathologist look at my biopsies?  If not, what steps do you plan to take in order to determine what form I have?"


----------



## NatashaChampion

Ah okay yer sounds like a good point to make! 
Im just totally confused now, i dont really know what indeterminate means? From reading online it sounds like a mixture of both CD and UC? I was just coming to terms with having Crohn's and now they dont even know! :/


----------



## David

It means they're not sure what form of colitis it is.

Would you be willing to share all of your symptoms and what tests they have run on you?  Do you know where all they've found active inflammation in your intestinal tract?


----------



## NatashaChampion

Ah okay!! not what I wanted to hear from them really!! 

Well since may last year i have had diarrhoea, blood, abdominal cramps, going to the loo about 10 times a day.  
I had a flex sig at the end of January and was put straight onto medication the same day with suspected Crohn's. 
Since then abdominal pain has reduce and havent lost blood in over a week which would suggest the Meds are starting to work, but still have diarrhoea and very disturbed sleep. 

Next week will be my first appointment with the consultant so i dont really know anything yet, feel a bit in the dark about it all! 
I only know that when they did the flex sig that there was inflammation in blotches or something like that?!


----------



## David

They haven't done a colonoscopy yet?

In Crohn's versus Ulcerative Colitis, "blotchy" inflammation would point towards Crohn's as UC inflammation is continuous.


----------



## NatashaChampion

Havent done a colonoscopy yet but im guessing my consultant will be sending me to one after next week, and thats what the guy said who did the flex sig, in fact he was 99% sure that it was Crohn's which is why he started me on all the Meds, thats why im a bit confused as to why they now are saying they dont know?


----------



## David

I suspect that your Consultant will know that granulomas don't have to be present for a Crohn's diagnosis.


----------



## NatashaChampion

Hopefully! I just hate waiting for answers, makes me really nervous. Thanks for the help


----------



## Essieluv

Does the thought of having kids in the future bother y'all? Like, I'm not ready to have kids yet, but when I am will I even be able to? And if I do have kids, will I be healthy enough to care for them and raise them properly?

It just seems like everyone is talking about babies and kids lately, and it makes me feel sad. Crohn's is so much more than a pooping disease *sigh*...


----------



## DPIG

Essieluv said:


> Does the thought of having kids in the future bother y'all? Like, I'm not ready to have kids yet, but when I am will I even be able to? And if I do have kids, will I be healthy enough to care for them and raise them properly?
> 
> It just seems like everyone is talking about babies and kids lately, and it makes me feel sad. Crohn's is so much more than a pooping disease *sigh*...


I have a 17 month old daughter and my son will be born in may. Being a dad is what keeps me going. I am a full time stay at home parent, so I guess I am lucky in the sense that I can be here when I am sick.

It wasn't always this way though. When my daughter was first born I was working night shift 11pm-7am for a private security company. I would work all night and when I got home around 8am my wife would leave for work, and I would take care of our brand new baby all day until she returned around 6pm.

I would have to start getting ready for work around 9:30 and leave the house by 10pm, so every day for 15 months I was operating on about 2-3 hours of sleep and dealing with sickness on top of it all.

Don't ever let fear stop you from having children, when you are ready. 

The best thing I have done with my life is becoming a father.


-Danny


----------



## Rissssssaahhhhh

I'm 22 and newly diagnosed....this makes me feel a lot better that theres more people my age out here than I thought!


----------



## nogutsnoglory

Rissssssaahhhhh said:


> I'm 22 and newly diagnosed....this makes me feel a lot better that theres more people my age out here than I thought!



Welcome here and to crohnsforum in general. It's a great place to meet others, share your story ups and downs and learn and give advice too.


----------



## SarahBear

Essieluv said:


> Does the thought of having kids in the future bother y'all? Like, I'm not ready to have kids yet, but when I am will I even be able to? And if I do have kids, will I be healthy enough to care for them and raise them properly?
> 
> It just seems like everyone is talking about babies and kids lately, and it makes me feel sad. Crohn's is so much more than a pooping disease *sigh*...


No, not really.  I'm confident I'll be able to push myself to do what needs to be done.  Also, my dogs always find a way to make me feel better, no matter how bratty they're being.  Surely a child would as well. 

There's no reason to assume you'll have any difficulty having children.  As far as I'm aware, there's an increased likelihood of miscarriage in women with Crohn's - but this is only while the disease is active.  While in remission, there should be no issues.

Try to focus on the positive as best you can. :hug:


----------



## sick_and_tired

Essieluv said:


> Does the thought of having kids in the future bother y'all? Like, I'm not ready to have kids yet, but when I am will I even be able to? And if I do have kids, will I be healthy enough to care for them and raise them properly?
> 
> It just seems like everyone is talking about babies and kids lately, and it makes me feel sad. Crohn's is so much more than a pooping disease *sigh*...


Personally, I think a lot about having children and I have all the same concerns as you. Currently, my crohns is very active and has been for some time. I have little to no energy and that's what worries me the most about having kids. Not being able to take care of them as I wish I could. For me, when I'm sick I shut down and id have to learn how to not do that when I have kids....
Most importantly though, I'm VERY worried about even being able to conceive a baby. I have put so much and so many different medications in my body and I can't help but think it is affecting something.... You're not alone! :eek2:


----------



## Melly

I'm 28 ---- I got diagnosed with Crohn's  right after I had my son (c-section)... Someone told me that that could be the reason I got it. ?? Either way, I wouldn't change it for the world! My babies are my everything! If I didn't have them, I probably wouldn't fight as much as I do. I'd want to just give up. But I can't, for them!  It is tough tho. I do get stressed. & my stomach does hurt sometimes. But I take deep breaths & fight through it. Idk if my body would be able to handle having another one tho!


----------



## DPIG

Melly said:


> I'm 28 ---- I got diagnosed with Crohn's  right after I had my son (c-section)... Someone told me that that could be the reason I got it. ?? Either way, I wouldn't change it for the world! My babies are my everything! If I didn't have them, I probably wouldn't fight as much as I do. I'd want to just give up. But I can't, for them!  It is tough tho. I do get stressed. & my stomach does hurt sometimes. But I take deep breaths & fight through it. Idk if my body would be able to handle having another one tho!


I don't think it is possible to get Crohn's from C section, but I am not a doctor.


----------



## Melly

I don't think so either. But, anything is possible I suppose!


----------



## mole25

i'd like to join this group as well, i'm brand new here


----------



## DPIG

Welcome mole25 

Tell us about yourself.


----------



## mole25

i got the disease in january but had been having flare ups since november of last year, i'm currently a sophomore in college and its really been the toughest part since i've had to deal with an anal fissure and its made having a social life close to impossible


----------



## DPIG

Sorry to hear that man, are you currently on any medication?


----------



## nogutsnoglory

mole25 said:


> i got the disease in january but had been having flare ups since november of last year, i'm currently a sophomore in college and its really been the toughest part since i've had to deal with an anal fissure and its made having a social life close to impossible



I can relate to social life going down the drain. My friends don't understand and I feel depressed watching everyone my age party and go out having fun without thinking twice. I feel like a prisoner of my body. It sucks, wish I had something better to say but I feel you.


----------



## mole25

DPIG said:


> Sorry to hear that man, are you currently on any medication?


yeah im in the middle of predinsone taper now, i was on busedonide for awhile but i had another flare and then had to switch... i'm also on azathioprine


----------



## mole25

nogutsnoglory said:


> I can relate to social life going down the drain. My friends don't understand and I feel depressed watching everyone my age party and go out having fun without thinking twice. I feel like a prisoner of my body. It sucks, wish I had something better to say but I feel you.



i definitely get the prisoner in ur own body thing, especially at this age where everything is suppose to be open to you and you don't have limits but yet your always limited


----------



## hellokittyabi

hi! new to this forum  do any of you have any advice on fatigue. no matter how much I sleep I am constantly tired and I feel as though I resort to coffee way too much! x


----------



## rygon

Have you had your Iron (ferritin) and B12 checked recently? These are the most probable causes (although have a read of this http://www.crohnsforum.com/wiki/Vitamin-and-Mineral-Deficiencies )

Even if they are in the healthy range i have found that if they are lower than what my usual levels are then I do feel tired and weak.


----------



## kel

hellokittyabi said:


> hi! new to this forum  do any of you have any advice on fatigue. no matter how much I sleep I am constantly tired and I feel as though I resort to coffee way too much! x


Are you really sleeping at night? In my experience sleeping during the day will not make up for lost sleep at night. B12 helped me a lot with fatigue. I use a transdermal patch.


----------



## RayRay1992

hey im new here im 21/22 in 6 days , woo!

In the middle of getting diagnosed....taking forever , i have a b12 and foliate deficiency having injections and tablets to deal with those.

And currently at university which is abit of a nightmare, and agree what other people said very early on this thread, i'm always the youngest there D:


----------



## LCATC945

Diagnosed 6th grade had first colonoscopy then. Went off meds and full remission in 8th grade. Didn't have flare till sophomore year second semester of college. Now I'm having another flare in my junior year second semester. On imuran, pentasa, and prednisone. Just started imuran a week ago


----------



## Magnolia24

Anyone with positive school experiences?? Or advice for going to school with crohns? I just got into an MFA program... So, I'm thrilled, but also really scared. I'll be moving across the country, and will have a much more intense schedule than what I've had since I was diagnosed in the fall... And I haven't been great at managing that...

I'm currently on Prednisone (weaning off), Imuran, and take curcumin, iron/B12, calcium/D, and a multi vitamin... And on Specific Carbohydrate Diet... And I'm doing okay, but not perfect... I want to make sure I do everything I can in the next few months to be healthy when I go... but I don't totally know what that should mean...

I feel like my GI doc has really pushed for biologics... and definitely will if Imuran doesn't work... but I don't feel like my illness is really severe enough to merit trying a drug that comes with those risks... then again, maybe I should take the most extreme measures to do everything I can to be healthy when I start my program?


----------



## Essieluv

I think that is a very individualised and personal decision. Are you happy with where your health is now? If so, then I don't think biologics are necessary. However, if you feel ill and want to feel better, biologics may be a good choice.


----------



## Magnolia24

Thanks. Yeah, that is what it may come down to. I didn't really mean to phrase my post to focus on the issue of biologics, though...I intended more to ask about the choices people have made to handle school or other demanding schedules or intense life transitions.


----------



## DPIG

Magnolia24 said:


> Thanks. Yeah, that is what it may come down to. I didn't really mean to phrase my post to focus on the issue of biologics, though...I intended more to ask about the choices people have made to handle school or other demanding schedules or intense life transitions.


I went to flight school. Imagine having symptoms / flare up and learning spin / stall recovery on turbulent days, in a tiny two seater aircraft with no bathroom. Even if you get sick you still have to fly and you are an hour away from the nearest airfield.



Try to keep yourself as low stress as possible. Take good care of yourself, eat clean.

Anything you can do to make sure you are going to be feeling as good as possible will help you.

If you get sick, take time to get better. Might be faster then trying to work through the sickness.


----------



## copeland

Magnolia24 said:


> Anyone with positive school experiences?? Or advice for going to school with crohns? I just got into an MFA program... So, I'm thrilled, but also really scared. I'll be moving across the country, and will have a much more intense schedule than what I've had since I was diagnosed in the fall... And I haven't been great at managing that...
> 
> I'm currently on Prednisone (weaning off), Imuran, and take curcumin, iron/B12, calcium/D, and a multi vitamin... And on Specific Carbohydrate Diet... And I'm doing okay, but not perfect... I want to make sure I do everything I can in the next few months to be healthy when I go... but I don't totally know what that should mean...
> 
> I feel like my GI doc has really pushed for biologics... and definitely will if Imuran doesn't work... but I don't feel like my illness is really severe enough to merit trying a drug that comes with those risks... then again, maybe I should take the most extreme measures to do everything I can to be healthy when I start my program?


I was diagnosed at 17, and made it through my last year of high school and 4 years of college (materials science and engineering) with Crohn's.  It's hard to call it entirely a positive experience; there were a lot of pretty difficult times, and a lot of times where I went to school, did homework, slept and prety much did nothing else.

I made the decision pretty early on to not let the disease get in the way of school/work, and sometimes that means cutting back on social activities to work hard and still rest enough to be able to work hard the next day too.  I also made the decision to NEVER skip class or work because I felt bad, because that can become a slippery slope when you feel bad every day.  I've still kept that up - the only times I've missed work for Crohn's have been for doctor's appointments that had to be during work hours, and I didn't miss a single class all through the last 3 years of college (way better than any of my professors).  I felt like shit a lot, but if you don't give yourself the option of ducking out it's easier to go.

On a practical note, learn where the best bathrooms are, and try to get on a schedule that works for you.  I never eat breakfast, and try to eat lunch late, which helps me feel good better during the workday.  A good schedule for you might feel completely different, so find what works.  And finally (I learned this one years too late) try to find some people who are nice and that you trust that you can talk to about things, cause it really helps.

P.S.  The biologics (Remicade, specifically) really helped me a lot.  My disease was/is pretty bad (fistulas, arthritis, etc), so they were probably necessary.  I would wait to make any real decision until you're completely off the Prednisone for a while, as things may change when that happens.


----------



## rygon

I sort of know how you feel DPIG, I've needed to go many a times whilst on a light aircraft whislt skydiving, the vibrations really don't help at al either.

Although I work full time, I am also doing a maths degree (distant learning) and I had to take time out due to this illness. Although the pain was bad, it was the tiredness and the amount of time in the bathroom that really got to me. In the end I went on to remicade and it certainly helped me get my life back on track. I think looking at the pros and cons it was definitely worth it for me


----------



## Alicat44

Dear Jsesaic, i can completely relate,I have extreme self confidence issues.I was diagnosed when i was 10 and am still going through alot of problems and I'm 20. I think time will eventually help, its just hard when in my head crohns is an "embarrassing" disease. All through high school i had to miss school every 6 weeks to have procedures and surgerys done and I would hide it from all my friends, alot of people still don't even know im sick. Ive just recently started to talk about my disease more and it deffinetly helps, Im starting to get more confidence. Eventually it gets better <3


----------



## Alicat44

Hellokittyabi, I am always tired! I drink way to much coffee and energy drinks but its the only thing that keeps me going. I think its just the strain crohns has on your body :/


----------



## mole25

I have to say that Remicadee has really been a miracle it just sucks that I had to drop out of this semester... Now I feel like a dropout even though I didn't do anything wrong..


----------



## LCATC945

mole25 said:


> I have to say that Remicadee has really been a miracle it just sucks that I had to drop out of this semester... Now I feel like a dropout even though I didn't do anything wrong..



Did you try to work with your professors at all? I was able to work with mine and I'll be finishing my courses over the summer


----------



## jumpingjacks99

Got my diagnosis just as I was turning 24.  I'm 26 now.  Unforunately because I'm not a minor, and because I decided to go into grad school, and because my last two jobs were unpaid internships, I am just THREE MONTHS shy of the work experience required to go on social security disability.  If I don't have a financial caretaker I just.... I don't know what to do.  I'm feeling better now and I've been looking for jobs for months and nothing.  It's really depressing.


----------



## afidz

There are 2 different types of disability. SSDI and SSI. I get them mixed up, but one of them is for people that have not contributed enough to the system. Have you sought out legal advice? Disability lawyers don't get paid until you win, so its beneficial to hire one from the beginning


----------



## jumpingjacks99

afidz said:


> There are 2 different types of disability. SSDI and SSI. I get them mixed up, but one of them is for people that have not contributed enough to the system. Have you sought out legal advice? Disability lawyers don't get paid until you win, so its beneficial to hire one from the beginning


Thanks! Yeah, there are definitely two and I always mix them up also.  It's been a while since I've tackled this particular issue, but I recall talking with an SSI rep about the other one and their conclusion was because I had over some certain amount of savings and assets, I was ineligible for the second kind as well, and the stipend they offered wasn't even enough to pay my rent anyway.   So I missed the first one because I didn't work enough and the second one because I worked enough to have some savings.  Crazy right? But savings don't mean income.  

I guess they want me to burn through it all and lose my apartment and then call back


----------



## afidz

Try to talk with a disability lawyer, like I said, they don't get paid unless you win so it doesn't hurt to see if they would take on your case.


----------



## Ness1993

Im 21 and just recently been diagnosed with colitis. 

I battled with doctors for over 4 years until they eventually listened to me. Iv been through so many different tests and even had a laparoscopy to then be told by a specialist that it was all in my head. Finally I have a diagnoses though . 

Im relieved that i finally have an answer but feel a bit out of control. The worst is my sleeping. Anybody have any tips for relieving pain while sleeping?


----------



## Paigeyd90

I just found out a few days ago that I have Crohn's disease. It has been a long process. They have to do blood work to confirm the diagnosis but I already had a colonoscopy including a biopsy that suggested Crohn's. I was so excited to find this support group since I am just 23 years old. It's nice to have people around my age that are going through the same thing I am. It seems to be extremely scary when you are younger. 

Thank you to everyone who has been amazing on this forum!

Does anyone have advice on how to talk to friends about Crohn's? My boyfriend is really supportive and my friends are too. However, it seems that people are age have no idea what Crohn's is and what we go through day to day. 
-Paige


----------



## theOcean

Paigeyd90 said:


> I just found out a few days ago that I have Crohn's disease. It has been a long process. They have to do blood work to confirm the diagnosis but I already had a colonoscopy including a biopsy that suggested Crohn's. I was so excited to find this support group since I am just 23 years old. It's nice to have people around my age that are going through the same thing I am. It seems to be extremely scary when you are younger.
> 
> Thank you to everyone who has been amazing on this forum!
> 
> Does anyone have advice on how to talk to friends about Crohn's? My boyfriend is really supportive and my friends are too. However, it seems that people are age have no idea what Crohn's is and what we go through day to day.
> -Paige


Welcome to the group! I'm 22, so it's always nice to see someone around my age. I'm glad to hear you have support from your boyfriend and your friends.  For explaining it to others, you might want to check out the about section in the forum wiki, and figure out which details you're comfortable sharing. I generally just explain to people it's an autoimmune disorder where my body creates inflammation in my GI tract, and it can be very dangerous if left untreated. 

Most people seem to be satisfied with that, and if they ask questions and are genuinely curious about the illness then I'm happy to answer. It often doesn't progress to that point, but if it does, it's nice to know that people are interested in educating themselves and understanding what I go through. I also tend to tell them about the medication I'm on, and laugh about the potential side-effects because treating it with humor is how I deal with it.


----------



## LCATC945

I am 21 and also have Crohn's disease. I have a supportive girlfriend (god blessed me with a little over a month before my most recent trip through hell that I'm still traveling through) and fraternity brothers that are concerned (they don't understand exactly what it's like to live with crohn's so there's been a couple of angering bumps but I set them straight pretty quick). A very supportive family as well (almost too supportive to the point of smothering. I actually had to tell them to back off I'm an adult at one point, yes I said it nicer than that). But communication is key. I'm lucky to go to a small college so I'm an actual person to my professors and they are concerned for my health and very willing to work with me. I will actually be finishing my semesters courses this summer because of everything.


----------



## LCATC945

On an unrelated note...because of my recent health troubles and significant weight loss...I can honestly say that I saw a dog today (American Maltese) that weighs twice as much as I do...I'm a 21 year old man...and I'm 5'10-5'11"...


----------



## SarahBear

Maltese are under seven pounds.  Mastiff, maybe?  They're pretty massive, so don't let that bother you!


----------



## LCATC945

Yeah. That one. The one that looks like the dog from the sandlot...could ride it like a horse.


----------



## Moriati

i did another post later on...


----------



## Paigeyd90

Moriati said:


> *What "young adult" type situations has IBD affected for you?*
> Well this year, after being diagnosed with Crohn's and having to recover from malnourishment and dehydration after having severe diarrhea for weeks, I have had to take time off from university and stay in my hometown, which has obviously affected my schooling and friend-relationships back in the town my university is in. I won't ever be able to drink too much alcohol, and I'll have to stay away from beer which I've heard is very bad for Crohn's disease!
> 
> - Has IBD affected your educational opportunities and choices?
> YES so far, but only by a little bit. Hopefully I can catch up to my studies again, since my flare up hit in the holidays and I'm recovering now (should be able to leave home in a week or so)
> 
> - Has IBD affected your independence from your family?
> YES! I've had to stay at home for awhile, and haven't been able to leave because I'm still recovering.
> 
> - Has IBD affected your social relationships, dating, or your body image?
> No luckily, I've never been one for dating. My friends have been nothing but supportive.
> 
> - Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?
> Well, since I'm just so new to this Crohn's diagnosis that will now follow me wherever I go, i'd say it's probably matured me in terms of taking my health more seriously. I want to do everything in my power to avoid flare ups. I don't want to be unhealthy and bedbound for most of my life, and this has encouraged me to take better care of my gut and myself.
> 
> - How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?
> Well, if you're a child, it just becomes a fact of life for you, something that's always been there and you manage. If you're a young adult, up until this point you've been healthy, you've been normal - and then BAM your whole world is changed abruptly, rudely, and forever by this damn autoimmune disease which you're told has no CURE, and you will have it for LIFE!!!
> Still coming to terms with this. I just hope I can go into remission and live as normal a life as possible with this diagnosis.


Totally understandable. I have been going through all the testing for Crohn's this semester. I am in a PhD program and they don't allow for any time off. I am so behind and really struggling in school because of the days I have missed. I'm trying to catch up now but it's been so hard! It's kind of nice to know I'm not the only one having these issues. I feel like none of my professors really understand. I have one professor that gave me extensions on a few assignments so that has been helpful.


----------



## sfgirl

I have to have part of my small intestine taken out. Has anyone had this done? I have so many questions. Will I be out of work for long? Will I have to stay in the hospital?


----------



## Elektrikhd

So I'm 29, but I saw at least one person who was 30, so I figure I can sneak in here. I feel like a young adult compared to a lot of the people I'm around most of the time (almost all of my coworkers are at least 10 years older than me). From the sound of some of the other posts, it should be ok, but if not I will (somewhat dissapointedly) depart.

So the questions...

- What "young adult" type situations has IBD affected for you?
I tend to crap out early (pun intended), moreso than my friends, even some of my older friends. Most of my friends are fairly tame, so I don't miss out on a whole lot, but I've done a little less of the going out and drinking type stuff than I would have.

- Has IBD affected your educational opportunities and choices?
I was already out of college when the Crohn's hit, so no.

- Has IBD affected your independence from your family?
I had already moved out on my own, so I'd say no.

- Has IBD affected your social relationships, dating, or your body image?
Yes. I don't visit friends as often, and I rarely spend nights away from home unless I'm travelling long(ish) distance. I had thankfully recently started a good relationship when the Crohn's hit, and he was there for me, and has been since. My body image was already pretty low to start with, although when I was on prednisone for a while, I felt even worse about how I looked. I'm still not happy. I'm more concerned with being smelly, though.

- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?
I've been more mature than my age for a while because of some crazy stuff in my childhood, but my experience with Crohn's gave me a better grasp of my own mortality than most people my age have, I think. Although I doubt I was really in any danger, when I wound up in the hospital two years ago, I was worried for a couple of days that I was going to die.
I've also started paying attention to my health, staying on top of pills and supplements and check-ups and such, while most of my friends aren't worrying about those things. I think some of this has spilled over into other areas of my life, leading to being a little more responsible with other things.
On the flip side, though, I find myself wishing very frequently that I could just have someone take care of me...I just don't want to deal with all of my responsibilities, especially on top of my health.

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?
I think the biggest difference is in what sort of support network you have. A child (hopefully) has their parents. An adult later on might have a spouse, and may have some very solid friends. At this stage in life, I think a lot of us don't quite have that. We've started to distance ourselves from our parents, we're often single, or our romantic relationships aren't that deeply entrenched yet, and a lot of our friends are kindof busy doing their own things. So I think in many ways, we're more on our own at this time of our lives.


----------



## JenLyn

I am 23 and I also have Crohn's Disease. I was diagnosed about 5 years ago but have never really found many people my age going through the same things. I used to be on remicade which was fantastic but I was switched to Humira last year. Is anyone else taking Humira for Crohn's?


----------



## theOcean

I am! I switched from Remicade to Humira because I was highly allergic to Remicade. I've been on Humira now since November, and it's been treating me really well. I'm comfortably in remission.


----------



## Amaze

JenLyn said:


> I am 23 and I also have Crohn's Disease. I was diagnosed about 5 years ago but have never really found many people my age going through the same things. I used to be on remicade which was fantastic but I was switched to Humira last year. Is anyone else taking Humira for Crohn's?


Hey Jen

I'm 23 and was diagnosed 5 years ago too!!

I use to be on humira and am starting remicade friday


----------



## JenLyn

You will love remicade! It worked wonders. Worth the wait of the iv after a few days/hours. How did you feel on humira? Did it help?


----------



## Elektrikhd

JenLyn said:


> I am 23 and I also have Crohn's Disease. I was diagnosed about 5 years ago but have never really found many people my age going through the same things. I used to be on remicade which was fantastic but I was switched to Humira last year. Is anyone else taking Humira for Crohn's?


I was started on Remicade, and it arguable saved my colon. It worked really well at first, but the treatments were wearing off too fast--my symptoms were coming back before the next treatment. I was quickly switched to Humira, and I've been on it for well over a year. I'm not 100% symptom-free, but most of the time I do pretty well. Biggest complaint is that it seemed to make me vulnerable to migraines.


----------



## JenLyn

That's me to a tee. So you are going to stay on Humira?


----------



## Elektrikhd

I'm staying with Humira at least for now. I might talk to my GI some about whether or not I should be having better results, but given how severe the Crohn's was when I was in the hospital, this might be the best I can expect on anything that's currently available.

I recently started seeing a neurologist about the migraines, and he put me on Topamax which seems to be working very well at preventing them. It causes occasional tingling in my feet or face, but I'll take that over the pain!


----------



## Geopie

JenLyn said:


> I am 23 and I also have Crohn's Disease. I was diagnosed about 5 years ago but have never really found many people my age going through the same things. I used to be on remicade which was fantastic but I was switched to Humira last year. Is anyone else taking Humira for Crohn's?


I'm also on Humira! I've been on it for almost a year and I have had so much more energy with it  But still have to get surgery soon I think because I have a stricture in my small intestine which keeps giving me obstructions 

I just joined this support group - I'm 19, almost 20 and have been diagnosed for about a year and a half. 

*What "young adult" type situations has IBD affected for you?*
Probably like most people - going out with my friends. I can never promise to go out with anyone because on the day I might be feeling like absolute crap. I also kind of hate staying over at strange places because I feel bad using other people’s toilets or I’m worried somebody will hear me in the toilet… Recently I was at a music festival and can I just say I HATE PORTALOOS. Plus I had to go when the best band was on and I missed them  

*Has IBD affected your educational opportunities and choices?*
I was going through my diagnosis/feeling my worst just as I was finishing my last year of high school but thankfully I still got into uni (studying dietetics - how relevant  ). I'm really enjoying uni and finding I still manage my work well, it helps that I really enjoy what I do. But I also juggle two part time jobs which I think might be a bit much for me, I might have to give one up.

*Has IBD affected your independence from your family?*
My family has been super supportive - my mum is a nurse so she is very caring and knows quite a lot about medications/giving injections which definitely comes in handy. The rest of my family is great and we love to have a laugh over my disease. I live with them still because you don't move out of home to go to uni here!

*Has IBD affected your social relationships, dating, or your body image?*
I've only shared my disease with my closer friends but everyone's either really supportive, or they just forget about it/don't really know what it is (but I'm ok with that). I had a boyfriend just after I got diagnosed but I let it go because I was having enough trouble around that time with my health and transition into uni. He was really nice too but I think I'm a bit scared of commitment when I'm sick, plus my confidence was non existent. We're still really good friends and he always like to know how I'm going. 

*Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?*
It definitely has - particularly when it comes to being mindful about everybody's health. Going into professional healthcare this is obviously an important quality to have (wow sounds like I’m writing a uni assignment). It kind of also teaches you not to take your health for granted!! Any day I'm feeling really good and energised I definitely make the most of it 

*How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?*
From a physiological point of view it’s probably an advantage - children with Crohn’s still have to develop which makes things difficult for them. Adults probably have a higher risk of more complications and take more time to heal after surgeries etc, plus other chronic diseases may start to emerge. This is when we’re at our “fittest.” But somebody else already made this point - it’s also a huge transitional stage of our lives that so many people without IBD struggle with anyway - uni courses, finding jobs, moving out, etc. so just chucking a new chronic disease onto all of that is… yeah. Annoying to say the least. 

Thanks if any of you read all that - I’m just procrastinating starting one of my assignments


----------



## Mrs_R

Hi everyone! I am 25 and was only diagnosed last week. It took me 10 years to get there though so feel this illness has really impacted on my life as a teen/young adult! I definitely know what you all mean about feeling like the youngest person in the hospital waiting room so it's nice to find a group with other people the same age who understand all of this!

My first symptoms started when I was 16 and have progressively gotten worse. I managed to complete my university degree, despite missing a lot of lectures and deadlines. My lead tutor was always so understanding which definitely helped. Unfortunately, as my symptoms have progressed my life has been affected much more. I have just lost my second job due to my symptoms and although it was a joint decision by my employer and me to end my contract, I still feel as though another opportunity has been taken away from me because I was waiting for a diagnosis and treatment. I had lots of aspirations when I left university but I feel like they've all been put on hold due to this illness. I still hope to do these things one day and although I'm currently not working, I am determined to find a career I truly love and that challenges me once I feel healthy enough to sustain it. 

In terms of IBD affecting my social life, body image etc, I feel I've been very lucky relationship wise. My hubby and I got together just as my symptoms seemed to take a turn for the worse. I was absolutely convinced he was going to say 'ewwww' and bow out but he stuck by me and never ever made me feel gross or ashamed. 5 years later and he is now my husband and I don't think I would have gotten this far without him. So in that respect, IBD hasn't affected me as such but it has definitely taken a toll on our relationship at times. I would definitely say it had an impact on me in university. There were many times I had to cancel plans for a night out because my symptoms played up. I always worried my course mates thought I was being boring or anti-social but I was really lucky to have a good set of friends around me who I still see now and understand what I have gone through. I certainly feel anxious about social situations generally as well because of IBD. The invite to a meal and drinks with girlfriends fills me with dread and all the usual worries of where the nearest loo's are etc definitely occupy my mind. 

One thing I told the GI Consultant last week was I feel like I'm 25 going on 70. It's horrible to not feel young and full of energy, and I really feel like I am missing out on that time in my life where I should be out exploring the world and enjoying new experiences. 

I hope my recent diagnosis means getting suitable treatment soon and getting my life back on track so I can do all of these things


----------



## JenLyn

You are not alone  23 going on 70 here. Hang in there. You'll find the perfect treatment for you! Best of luck. Congratulations too that's awesome that you found someone to stick by your side  what is your degree in?


----------



## Elektrikhd

I'm with you as well on feeling much older than my age...29 going on 79. Some days I wonder if I'm going to need a cane to get around, but it hasn't gotten to that point yet. Although I do sometimes find myself needing afternoon naps and drinking ensure because I've lost my appetite.


----------



## Mrs_R

JenLyn said:


> You are not alone  23 going on 70 here. Hang in there. You'll find the perfect treatment for you! Best of luck. Congratulations too that's awesome that you found someone to stick by your side  what is your degree in?


Hi JenLyn. So nice to not feel alone although I am sorry you feel the same way too! It can be really disheartening to see other people your age out and about enjoying life while you are stuck in the house too scared to not be near a loo. I can't wait for the day that doesn't control my life! :lol: My degree is in Sociology. I absolutely loved completing it and managed to achieve a First Class Honours which amazed me considering how much lecture time I missed. I would love to do something with it one day once I have the energy! I hope the perfect treatment is just around the corner for me. Thank you for your kind words and well wishes x :hug:


----------



## Mrs_R

Elektrikhd said:


> I'm with you as well on feeling much older than my age...29 going on 79. Some days I wonder if I'm going to need a cane to get around, but it hasn't gotten to that point yet. Although I do sometimes find myself needing afternoon naps and drinking ensure because I've lost my appetite.


I am totally with you on the cane thing! Sometimes I cannot physically hold myself up to walk and those days I spend in bed feeling like a frail old lady. Afternoon naps seem to have become part of my daily life now and they always last a lot longer than I intend :lol:! I hope you start to feel better soon and are able to enjoy life as a young adult x :hug:


----------



## Liam-Sman

Hope your all keeping well!  x


----------



## Paigeyd90

JustAYoungLad said:


> I'm 24 with Crohn's. Diagnosed when I was 10/11 ish. I got into remission straight away and stayed into remission for 10 years.
> 
> I went through college and university symptom free. Unfortunately in my final year just around graduation I started flaring and I've been fighting since. I think the stress of my final masters year destroyed my insides.
> 
> Anyway, we have to keep positive! It's just a road bump on the very long road.



I know exactly how you feel. I am in a PhD program and I feel like the stress doesn't help in making me better and not to have flare ups. I was diagnosed a month ago and have been fighting to get into remission ever since. Good luck! We can do this!!!!


----------



## Jboy--

I'm 21 years old, sign me up


----------



## nogutsnoglory

Anyone goto crohns support groups? Why is everyone so old. I know a lot of us younger folks have it but do people our age just not wanting support. So frustrating!


----------



## Jboy--

nogutsnoglory said:


> Anyone goto crohns support groups? Why is everyone so old. I know a lot of us younger folks have it but do people our age just not wanting support. So frustrating!


I find a lot of people in our generation avoid going to the doctor, eating healthy and going for physicals/blood work so it could be that a lot are undiagnosed but some may just not process the disease properly mentally.


----------



## Elektrikhd

I think it's sometimes hard to accept that we're having the health problems we are, in part just because of how we've usually felt, and the images we're presented with about people are age...and then there's the stuff that we hear people say, too: "but you're so young!" "oh, wait til you're my age" "you can't be having that yet, you're too young," and so forth. I know for me, it has often made me second-guess my symptoms, and I've wondered if maybe I'm just exaggerating or looking for excuses to be lazy (especially since a lot of people out there like to say that our generation is lazy). I haven't encountered too much of that around these forums at least. Trying to explain to some of my coworkers, though...


----------



## Jboy--

Elektrikhd said:


> I think it's sometimes hard to accept that we're having the health problems we are, in part just because of how we've usually felt, and the images we're presented with about people are age...and then there's the stuff that we hear people say, too: "but you're so young!" "oh, wait til you're my age" "you can't be having that yet, you're too young," and so forth. I know for me, it has often made me second-guess my symptoms, and I've wondered if maybe I'm just exaggerating or looking for excuses to be lazy (especially since a lot of people out there like to say that our generation is lazy). I haven't encountered too much of that around these forums at least. Trying to explain to some of my coworkers, though...


I agree with you completely, that's why I think I delayed going to the doctor & dealing with a year of symptoms and getting the ball rolling with tests, I'm now kicking myself for not getting the process going earlier. OH tell me about it, so many people say our generation is lazy.. but we're not, we have a prevalence of anxiety disorders more than any other past generation and we just deal with things holistically, that's why we tend to clash with the baby boomers a bit more I think. Some people don't get it as you were saying with the "oh you're so young to be dealing with that" but you know, Crohn's, Colitis and any IBD disease doesn't know age, race, color or creed.. so people need to realize that autoimmune illnesses can occur with anyone at anytime. One of my best friends is 20 years old and has fibromyalgia, she was diagnosed at 18.. so you and I both know that age means nothing.


----------



## Elektrikhd

Jboy-- said:


> I agree with you completely, that's why I think I delayed going to the doctor & dealing with a year of symptoms and getting the ball rolling with tests, I'm now kicking myself for not getting the process going earlier. OH tell me about it, so many people say our generation is lazy.. but we're not, we have a prevalence of anxiety disorders more than any other past generation and we just deal with things holistically, that's why we tend to clash with the baby boomers a bit more I think. Some people don't get it as you were saying with the "oh you're so young to be dealing with that" but you know, Crohn's, Colitis and any IBD disease doesn't know age, race, color or creed.. so people need to realize that autoimmune illnesses can occur with anyone at anytime. One of my best friends is 20 years old and has fibromyalgia, she was diagnosed at 18.. so you and I both know that age means nothing.


I never even thought about the anxiety disorders. Anecdotally, I can see some indication for that; a LOT of my friends have problems with anxiety, some fairly mild, and they variously take a little medication or sometimes smoke a little pot on some nights; one can't tolerate the meds anymore, or they just don't work, and she's mostly a shut-in now. I've recently started having anxiety problems, too, not sure what of three or four different possibly causes are to blame.


----------



## nogutsnoglory

Jboy-- said:


> I find a lot of people in our generation avoid going to the doctor, eating healthy and going for physicals/blood work so it could be that a lot are undiagnosed but some may just not process the disease properly mentally.


I think a lot of young people have IBD but I think most just come online and get the info they need and don't want to deal with it or talk about it in person. It's really a shame because I find the support groups really helpful emotionally coping but the friends I made from them are significantly older, like they can be my parents or even grandparents lol.


----------



## Jenafer

I completely agree with all of you. I am 27, I have had symptoms for over 10 years and didn't start to try and figure out what the cause was until about a year ago. I was diagnosed in Oct 2013. I was young and having fun in college etc. Right after college I self diagnosed a dairy intolerance and removed most dairy from my diet which helped for a while. When I decided to start eating more healthy (lots of fruits and veggies) is when my problems started to really accelerate. I was also in a stressful relationship (I've noticed stress is the worst trigger for me). I started to have extreme back pain and pain when when going to the bathroom. All my doctors now tell me seeing how damaged my colon is and the fistulas I have definitely had Crohn's many years. I'm kicking my self now too for not doing something about this years ago, maybe I could have caught it earlier and wouldn't have to go through surgery now. I wish I had thought to tell a doctor years ago about my pain but didn't see it as being odd or unusual, or maybe I didn't really think about it at all. I don't think I thought that what was happening could be a serious health problem or even knew what Crohn's Disease was before I was diagnosed.


----------



## Jboy--

Elektrikhd said:


> I never even thought about the anxiety disorders. Anecdotally, I can see some indication for that; a LOT of my friends have problems with anxiety, some fairly mild, and they variously take a little medication or sometimes smoke a little pot on some nights; one can't tolerate the meds anymore, or they just don't work, and she's mostly a shut-in now. I've recently started having anxiety problems, too, not sure what of three or four different possibly causes are to blame.


A lot people don't think about it, however I know a lot of people in our age group with anxiety/panic issues and most of my close friends experience it at certain points, I have an actual disorder though but I'm in therapy for it which is helping a lot! I only take medication when I have a panic attack which is maybe once or twice every two months. Some say pot helps, I have smoked it in my early teens but I haven't since (I'm a cigarette smoker though lol). Sorry about your friend, that sounds like my Aunt.. she has agoraphobia (afraid of open spaces) and panic disorder, so she only leaves the house to go to the doctor really, fill prescriptions and get groceries. I'm glad I got into therapy because I started getting a little anxiety in places I felt very comfortable with and have been going to for years, that has now subsided thankfully. But what I'm getting at is, I think the reason why anxiety/panic is more common in our generation is because of all the things we have to worry about and how much social media tends to impact our lives.


----------



## ajoy1920

Hi, im new to this site but its seems helpful so far. I'm 27yrs old & I was diagnosed in July 2013 with ulcerative colitis. I did no research on colitis & assumed it was simple and it would be over soon (stupid mistake). After about a month i stopped taking my meds and continued going out, drinking, working 12hr shifts at a job that totally stressed me out. November 2013 everything became real, i was admitted into to the hospital again & i finally started taking everything seriously. I've had over 6 blood transfusions, iron infusions and i've recently started receiving Remicade. Ive taken all types of meds and none of them seem to work. I'm hoping the Remicade kicks in..I'm officially tired!!! I want a good nights rest...one day its gonna happen!!!!


----------



## Hunt

I'll be joining this, found the teen group but as I'm 20 don't quite qualify anymore lol.


----------



## theOcean

ajoy1920 said:


> Hi, im new to this site but its seems helpful so far. I'm 27yrs old & I was diagnosed in July 2013 with ulcerative colitis. I did no research on colitis & assumed it was simple and it would be over soon (stupid mistake). After about a month i stopped taking my meds and continued going out, drinking, working 12hr shifts at a job that totally stressed me out. November 2013 everything became real, i was admitted into to the hospital again & i finally started taking everything seriously. I've had over 6 blood transfusions, iron infusions and i've recently started receiving Remicade. Ive taken all types of meds and none of them seem to work. I'm hoping the Remicade kicks in..I'm officially tired!!! I want a good nights rest...one day its gonna happen!!!!


Aww, good luck with the Remicade!! I really hope it works for you.  Glad to hear you're finally getting proper treatment, and hopefully you'll be feeling back to normal soon!


----------



## ajoy1920

Thanks a bunch..it hasn't kicked in yet but I go in 6/24 for my 3rd dose...I'm hoping to see results soon...are you in remission??


----------



## theOcean

I am, yes! Have been since last October and hope to stay there as long as possible.


----------



## LCATC945

I'm back to my old weight. Finally. Start humira wed. Have it in my fridge. Im in medicinal remission. Which is good.


----------



## Cosmojo

Hey young adults, I've been around the forum for awhile, bummed I didn't see this earlier! I love knowing other young people with IBD, makes me feel like I belong. I'm a graduate student so I'm living the life I want, but socially IBD makes it hard, always being tired, I really don't drink and most 20-somethings don't understand the concept of not feeling well all the time.

Anyways this forum has helped me quite a bit- thanks


----------



## Orchid

Most people are still riding that "I'M INVINCIBLE" high of youth. It's pretty annoying and I'm so glad I have friends and a fiancee who know what it's like to have a chronic illness.


----------



## Magnolia24

Welcome Cosmojo. It always makes me feel good to hear from grad students making it work. I'm starting an MFA program this Fall... I'm nervous, but at the same time having to fight a little harder made my goals and priorities that much clearer through the application process, so I also feel good about the path my life is taking.


----------



## Orchid

What's the program and where?


----------



## JenLyn

Taking it out of the fridge about 20 minutes before helps with the injection pain. Good luck  I'm glad to hear you are in remission. That's great!


----------



## JenLyn

LCATC945 said:


> I'm back to my old weight. Finally. Start humira wed. Have it in my fridge. Im in medicinal remission. Which is good.


Taking it out of the fridge about 20 minutes before helps with the injection pain. Good luck  I'm glad to hear you are in remission. That's great!
I just replied twice. Oh well


----------



## JenLyn

Cosmojo said:


> Hey young adults, I've been around the forum for awhile, bummed I didn't see this earlier! I love knowing other young people with IBD, makes me feel like I belong. I'm a graduate student so I'm living the life I want, but socially IBD makes it hard, always being tired, I really don't drink and most 20-somethings don't understand the concept of not feeling well all the time.
> 
> Anyways this forum has helped me quite a bit- thanks


I'm in grad school too! Stress is awful but we can make it


----------



## Allegra

I'm 18, and I've just been diagnosed a couple of weeks ago, and I'm due to start University in two weeks! So unbelievably frightened because I'm going through such a bad flare up at the moment, don't know how I'm going to be able to be so sociable!


----------



## fionaclaire

Hi, I'm 17 and got diagnosed last year with crohns. Although my condition isn't severe, it has affected my life in a huge way, so hoping this forum can help


----------



## littlefaeriefae

24. diagnosed with Crohns Nov 2013. still awaiting some relief. The hardest part of this whole thing has been image overall. of course my body image has gone down. I've gained over 20lbs from prednisone  but also my self image has been affected a lot. I always prided myself in being the "person you could always count on" I was always reliable at work and worked hard. I was still working VERY hard while i was undiagnosed but just kept pushing.  Now i have a hard time letting me down when I'm sick. luckily now, i am a nanny and my job is a little more lenient now, but i still feel guilty and horrible when i have to take time off for my health. My boss literally yelled at me for coming back to work too soon after my last hospital stay, but i just can't handle the fact that people rely on me and my illness prevents me from being dependable. Not just in the work environment either. I feel like i constantly let down my fiancé. He'll want to do things together or stay up and watch a movie and i just end up not feeling well and falling asleep on him. :/ It definitely affects my social life, and being only 24 i feel like an 80 yr old woman


----------



## LCATC945

It gets better if the right medication can be found and it can be put into remission.


----------



## SFGiantsgirl

Hi, I was diagnosed with crohn's about 3.5 months ago and I'm 21 years old. I just FINALLY got the green light to stop the prednisone but am still on Entocort for a little while longer. How long did it take you for the symptoms to go away? I absolutely hate the moon face. As much as I try and tell myself it's temporary and to not think about it, it's hard as a young woman in college to stay positive. Any advice? I've been feeling really down for a while and am ready to feel like myself again.

Also any advice for taking humira? I'm about to start the injections sometime next week and am a bit nervous.


----------



## littlefaeriefae

^ I just started Humira a week ago. The injections weren't all that terrible, like you I just came off prednisone. I put on close to 20 lbs from it  but the extra weight and tummy I got from it made the Humira injections go a lot smoother than my normal body weight. I was terrified because everyone said that the pen injections hurts more than the syringe but they actually weren't bad at all and they were super easy. Next week is my second injection and I'm really excited for it to kick in and start working  if you have tattoos or piercings the injections will be a breeze.  As for the moon face I promise you it does go away  good luck!


----------



## Luthien

I gained almost 40 pounds on prednisone! Now some of it was needed, but a lot wasn't. 

The best thing for Humira injections is to take them out of the fridge a while before injecting! That helped me a lot.


----------



## sleepallday

It's so great to have found this thread. While I wish that none of you had IBD, it's really nice to know that I'm not alone in all of this.

I got diagnosed at age 20 and I am just about to have my 21st birthday in about 2 weeks! I am meant to be having surgery but my specialist (the absolute legend!) allowed me to hold out until after my trip to the USA. 

Work is hard (I work in a very physically and mentally draining field) and the majority of days I'll come home and go straight to sleep. 
When I was first diagnosed, my supervisor actually stopped giving me work for a couple of months because I had to turn down two shifts for medical appointments and she saw it as me not being thankful for having the job I have.. (It's also a very competitive field). 

As for my family and partner, I am so blessed in every way to have them.

I really just want my energy back so I'm not a grandma, plus so that I don't feel annoying complaining about pain all the time! 

Did you all feel that surgery was worth it?

Also sorry for the personal question but for a 20 year old, I'm not feeling very uhmm.. How do you put it nicely.. In the mood? Does anyone else feel the same? I feel so bad for my poor bf! Haha!


----------



## fissure2

im 24 i was diagnosed in june, i live alone, no family nearby. its been incredibly tough. i lost 50 lbs from the initial flare and it is still lingering. ive only gained 10 back from the prednisone and my doc has me weaning off it starting this week. i want to go back on the entocort, it healed my fissure the first time. i am also very anemic, been hospitalized twice because of it. and i decided to take this semester off of school - my third break...
I still get very bloated and have trouble eating enough to gain wait. I am waiting to get the food sensitivity blood test i hope it helps.


----------



## emilyk

I'm a creative one, 24 years old living in the north west. 
I'm trying to be on the forum on a regular basis because I'm alone and in my head alot. At the moment, I'm scheduled to start the humira treatment this week but I'm not one to dwell on my nervous shots stuff, I'm looking to make friends who just understand that life's different than your 20-something year old friends.

I'm into classic/art house/pop culture films. 
I'm getting into yoga and meditation. 
I'm teaching myself sewing and working on lounge/lingerie and workout clothes. 
I read comics, sci-fi and how-to non-fiction. 
Message me a quick hello : ]


----------



## jessica22

Hi everyone I'm 23 and I'm glad that you made this post .I was diagnosed with colitis at age 6 but after a few years my doctor confirmed that it was crohns.I live a pretty normal life I'm in college taking up nursing, go out with friends but I do have my bad days as well.It's interesting to find people who you can relate because when I was a child it seemed as if I was the only person with this disease but now that I'm older I have came across others my age with crohns as well.We have even become friends so it might seem like there's no one that understands but there is.I look forward to talking with you all


----------



## jessica22

Lara said:


> It's so great to have found this thread. While I wish that none of you had IBD, it's really nice to know that I'm not alone in all of this.
> 
> I got diagnosed at age 20 and I am just about to have my 21st birthday in about 2 weeks! I am meant to be having surgery but my specialist (the absolute legend!) allowed me to hold out until after my trip to the USA.
> 
> Work is hard (I work in a very physically and mentally draining field) and the majority of days I'll come home and go straight to sleep.
> When I was first diagnosed, my supervisor actually stopped giving me work for a couple of months because I had to turn down two shifts for medical appointments and she saw it as me not being thankful for having the job I have.. (It's also a very competitive field).
> 
> As for my family and partner, I am so blessed in every way to have them.
> 
> I really just want my energy back so I'm not a grandma, plus so that I don't feel annoying complaining about pain all the time!
> 
> Did you all feel that surgery was worth it?
> 
> Also sorry for the personal question but for a 20 year old, I'm not feeling very uhmm.. How do you put it nicely.. In the mood? Does anyone else feel the same? I feel so bad for my poor bf! Haha!


I had my surgery at the age of 11 and before that I was home-schooled and always sick and in the hospital but after surgery I started feeling so much better.I was able to graduate with my class and now I'm 23 and in college taking up nursing and I'm healthy enough to have a job so in my opinion it's definitely worth it


----------



## dgiouz

im 23, been living with crohns for 9 years. 4 flare ups and my last one this summer was pretty bad. Im on remicade now and it's amazing. After 1 infusion I felt drastically better.

Its cool to see people my age with this illness. (well not cool, Im not happy about people being sick, but I'm sure you know what I mean..) Whenever I go see my doc I'm surrounded by old people lol.


----------



## jessica22

@djious lol I know exactly what you mean.When I was going to my pediatric gastrointerologist I was always the oldest there but now I'm 23 and I'm always the youngest at the doctor so yes it's cool to see that there are others like you and can relate to you more


----------



## dgiouz

Im sure everyone feels the same but I just want to point out that we have our whole lives ahead of us and shouldn't let this control our lives or influence our decisions in life.

I never stopped playing sports nor stopped travelling, including cuba, I did get sick cause the food is just horrible quality, but not that bad.. was able to recover with antibiotics..


----------



## Moriati

I was diagnosed this year in April, when I was 17 - I'm 18 now, and still have no idea what the future holds with this disease, because they caught it very quickly, and it's a very recent development for me.

- Has IBD affected your educational opportunities and choices?
Luckily, no! The degree I'm doing at the moment is very chill, lots of down time and not much stress at all, a steady workflow throughout the year as opposed to lots of exams at the end of it - this should help with stress levels, certainly. I've had one (and a half) flare ups so far though and it's only the first year of my degree. Who knows what else could happen....

- Has IBD affected your independence from your family?
No. I've still been able to move out of home and to another city successfully, and live a normal life. If I need it, my aunts and my grandmother are always there if things go too wrong away from my mum and dad.

- Has IBD affected your social relationships, dating, or your body image?
Not really for social things and dating, or not YET anyway. I feel like maybe it's a matter of time though, the disease has only been active since this year.
Body image has taken a hit, that's for sure. I don't trust my body anymore, and everytime I have to go to the gastro because my Crohn's symptoms are worsening, I end up having an emotional breakdown afterward because I find it hard sometimes to deal with the fact that my body is broken, and that it's like another step on the road to more pills, injections, surgery, another step away from a normal life.

- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?
It's made me uniquely aware of my own mortality and the fragility of life, that's for sure. I'm acutely aware that I may not always be able to do the things I want to, now.  

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?

If you're a child, I suppose it's like a way of life, like it's always been there for you, so you're more well adjusted. For me it was like BAM completely out of nowhere, and I'm trying to adjust to the fact that this is now going to be a big part of me forever.


----------



## Sea_Star

This has been a very inspiring thread!

I'm currently 25 years old, never had a bf, never been on a date lol (I've always thought life is like teh movies...guy comes to girl  Never cared about appearances,etc.) I was diagnosed 4 years ago, and even though I've been pretty benign with my illness, and felt great for 2 years off meds...NOW that I want to go out there and date and LIVE...things are somewhat feeling not right at the moment. I've seen so many GI's, and I'm sticking with one (Mayo Clinic) about 4 hours away..and I wonder, what would a guy think if he knew my doctor is that far away?! lol. Or that I would have to restart taking an immunosuppressant?!
And the kicker is...I felt fantastic before, and I have this thought that I need to feel that way again before I can accept to date. I don't have bathroom probs, just abdominal pains that this time around have sprung up in new places (2nd time in 4 years I've had symptoms...) I feel like I'm waiting to feel 100% before I can LIVE...but reading this, it's humbling to know that hey, life is not perfect like a movie lol....


----------



## Sea_Star

How many of you are over 21 and have yet to go on a date or be in a relationship?


----------



## rsilverlining

Hi! I'm 20 years old, living on my own since a little before my diagnosis out in California. I work two jobs, waitressing and editing, and I go to university full-time. I am dating and all of that as well. Weight yo-yos like crazy; 140 lbs naturally, 122 at my lowest low of a flare and 165 after prednisone (that awful nightmare drug, ugh). High, high pain rates for flares, plus nausea and loss of appetite. Using Remicade every six weeks, Norco for bad pain days, CBD/THC tentatively to try and find a healthy dosage. 

I am so happy that you're all here, though of course not sick. I go to such ridiculous lengths IRL to hide being sick that I really needed people who were not doctors who knew andcould be talked to. I am exhausted.


----------



## Oroms

Lara said:


> It's so great to have found this thread. While I wish that none of you had IBD, it's really nice to know that I'm not alone in all of this.
> 
> I got diagnosed at age 20 and I am just about to have my 21st birthday in about 2 weeks! I am meant to be having surgery but my specialist (the absolute legend!) allowed me to hold out until after my trip to the USA.
> 
> Work is hard (I work in a very physically and mentally draining field) and the majority of days I'll come home and go straight to sleep.
> When I was first diagnosed, my supervisor actually stopped giving me work for a couple of months because I had to turn down two shifts for medical appointments and she saw it as me not being thankful for having the job I have.. (It's also a very competitive field).
> 
> As for my family and partner, I am so blessed in every way to have them.
> 
> I really just want my energy back so I'm not a grandma, plus so that I don't feel annoying complaining about pain all the time!
> 
> Did you all feel that surgery was worth it?
> 
> Also sorry for the personal question but for a 20 year old, I'm not feeling very uhmm.. How do you put it nicely.. In the mood? Does anyone else feel the same? I feel so bad for my poor bf! Haha!



Hey Lara! I understand your frustration with the fatigue! Not so nice... just make sure your iron levels are good! As for surgery I cannot even tell you how much of a difference it has made in my life. Obviously if the specialist is recommending it then it is probably necessary and I would be excited more than nervous. I attended my first week of university a week after surgery so it doesn't slow you down TOO much but be prepared for a few months of recovery. 

As for being in the mood as you put it lol just make sure your boyfriend knows why! Remind him that it's not his fault and you will feel a lot better and more like yourself after the surgery 

Hope your trip is/was awesome


----------



## FrozenGirl

Sea_Star , I'm not over 21 but I have never dated anyone or been in a relationship  ( other than with my bed 

And honestly I'm scared of how and when to disclose this. I mean only my family knows at the moment. Not even close friends know. A lot of lying is involved in keeping it a secret.


----------



## theOcean

Sea_Star said:


> This has been a very inspiring thread!
> 
> I'm currently 25 years old, never had a bf, never been on a date lol (I've always thought life is like teh movies...guy comes to girl  Never cared about appearances,etc.) I was diagnosed 4 years ago, and even though I've been pretty benign with my illness, and felt great for 2 years off meds...NOW that I want to go out there and date and LIVE...things are somewhat feeling not right at the moment. I've seen so many GI's, and I'm sticking with one (Mayo Clinic) about 4 hours away..and I wonder, what would a guy think if he knew my doctor is that far away?! lol. Or that I would have to restart taking an immunosuppressant?!
> And the kicker is...I felt fantastic before, and I have this thought that I need to feel that way again before I can accept to date. I don't have bathroom probs, just abdominal pains that this time around have sprung up in new places (2nd time in 4 years I've had symptoms...) I feel like I'm waiting to feel 100% before I can LIVE...but reading this, it's humbling to know that hey, life is not perfect like a movie lol....


I met my boyfriend right after I just turned twenty-one, and we started dating maybe a month after that -- and also, at the exact same time my Crohn's flare started kicking up again, and badly.

During that time, he saw me go through tons of medication changes, bloating with prednisone, a fistulotomy, basically a month's stay in the hospital, changing from one biologic to another as well as going on immunosuppressants, pluuuus rapid weight loss of about 40 pounds during that time from my Crohn's.

That was all within the first three months of us dating. He's still with me, and it's almost been two years, now. He was wonderful and supportive through all of it.

Movies are pretty unrealistic, especially about relationships and romance. So it's not a bad thing that things happen differently in real life, especially for those of us with a few health complications.


----------



## LCATC945

I met my gf and the same thing happened that happened to ocean. I haven't been as active on here cause of school and finals I have the last one tomorrow for the semester. Anyway. I had a flare that started after our one month. She's still with me. I lost 40lbs and then gained 70. Now I have to get into shape to be able to test for hopefully getting a job in policing. I ended up during the flare being in the hospital for a week and going on morphine and also Percocet,good times, lots of sleep. Anyway I'm good now. I have about 4 part time jobs and still don't make anything while going to school and being into a relationship. And I'll tell you this much, within 6 months I will ask this girl to marry me because she stood by me through the worst of it. I know the answer she'll say. I mean we already have a day picked out. I spent a lot of my money on a ring and let my prized possession (my car) to stay in slight disrepair. But the ring is paid off. She's wonderful. And I don't know what I'd do without her.


----------



## Elektrikhd

I can echo some similar things. I met my BF before my Crohn's started up, actually, and after several months he moved in. About a month later is when the Crohn's hit and I was in the hospital for 19 days as they tried to figure out exactly what was wrong and so forth. Plus I was very sick for a couple of weeks leading up to that. He took me to the ER at my doctor's suggestion that time, and he's taken me two other times for out of control migraines over these past 3 years. We're still together. Through my flare-ups, through the migraines that wipe me out, and the general being tired and sore that tends to be with me.


----------



## DavidXU

Hi I am 24 yr old now and doing my graduate studies.


----------



## MirrorBride

Lovely support group! I've just been diagnosed at 21 and need support from others my age. Anyone have any tips for the newly diagnosed?


----------



## SageFaye

24, just got my officAl diagnosis after a year of in and out houspital stays. Someone suggested I come here for support so I thought I would try it out.


----------



## countrygirl23

I will be 17 in April. I was diagnosed June 6, 2014. I am fairly new to everything, but I know somethings. 
I am currently taking Mercaptapour, Lialda, multivitamin, iron, and I was going to Remicade treatments, but it has caused my eyes to go very blurry and cause me to need glasses. So I am in need of a new treatment medication.


----------



## LCATC945

countrygirl23 said:


> I will be 17 in April. I was diagnosed June 6, 2014. I am fairly new to everything, but I know somethings.
> 
> I am currently taking Mercaptapour, Lialda, multivitamin, iron, and I was going to Remicade treatments, but it has caused my eyes to go very blurry and cause me to need glasses. So I am in need of a new treatment medication.



I would see if your dr would allow you to switch to Humira. But also remember this, at 17 your eyes are still growing and changing. It could just be a coincidence that they happened at the same time.


----------



## Cross-stitch gal

Within the same year I was diagnosed my eyes were giving me problems and I ended up needing reading glasses.  I doubt it was caused from my meds, just a coinsidence.  However, it never hurts to ask about it.


----------



## brooklyn23

Hey, I'm 26, but I was diagnosed at 22. I may or may not be out of remission, who knows, I'm showing symptoms but no visible inflammation.


----------



## LCATC945

What symptoms?


----------



## brooklyn23

LCATC945 said:


> What symptoms?


Abdominal pain, vitamin D deficiency, fatigue, joint aches (they come and go), pain after eating, nausea, and constipation. (I never had a lot of D even when I was first diagnosed). Scopes showed equivocal red lesions in the small bowel, but no obvious ulceration.


----------



## ClaireBear7

Hello everyone!

I am taking a health professions writing course at UC Davis and one of our assignments is to write case study. Originally I was going to use myself as "the case", but it turns out I have to interview someone else. Would anyone be interested in being interviewed? I'm asking on Crohn's forum because I don't know anyone (other than myself) who has Crohn's.


----------



## Hrogers

ClaireBear7 said:


> Hello everyone!
> 
> I am taking a health professions writing course at UC Davis and one of our assignments is to write case study. Originally I was going to use myself as "the case", but it turns out I have to interview someone else. Would anyone be interested in being interviewed? I'm asking on Crohn's forum because I don't know anyone (other than myself) who has Crohn's.


I'd be fine doing it, I'm pretty busy with school myself right now, but if you just sent me the questions over email or something like that I would be able to answer them for you, just let me know


----------



## ClaireBear7

Thank you so much. My professor will be discussing the detailed requirements for the paper early next week, but in the meantime can I have your email address so I can send you some information about it?
Again, thank you!


----------



## SupportiveMom

Hey hrogers I suggest you delete your post above with your email address. This thread came up in my google alert and showed your email address. With that info it isn't hard for people to find out who you are. Send the email address in a private message, not where everyone can see it.


----------



## LCATC945

Didn't pass my physical exam for police process hiring. Worked hard but just couldn't do it today. This sucks.


----------



## duh panda

Hey all,

Been on the forum a bit but haven't really connected with anyone by age specifically. Now 24, was diagnosed with colitis at 16 which was changed it crohn's upon switching GI's when moving senior year of high school. Never been in remission.

Got through college with a lot of help from friends, my better half (5 years in June), and working with professors at the personal level to get curriculum to work for me whether I could make it into class or not. 

I've gotta say transitioning from college to everything else has been a bitch at times. I feel like the perfect example of a "boomerang" child as it seems like each point of "transition" results in crazy demanding flares where nothing can beat a mother's full time care. 

But the most frustrating/ confusing/ head spinning part of navigating life with Crohn's is more of not knowing how to progress then what to do. For example, while I was recently approved for disability that's certainly no one's life goal to finding fulfillment - Yet when chronic disease demands so much just how do you approach pursuing a career? 8 years of chronic illness, side effects from medications, and often needing assistance for some basics to living - like meeting nutritional needs - gives one a lot to work with. I didn't figure out how to get college to suit my needs just to get beyond that and swallowed up by the rest of the world. 

Looks like a lot on here are newly diagnosed as late teens/ 20's. If anyone has random questions, needs to vent, I'm generally around - tend to know a thing or two (or an idea of where to look) - Or at the very least have an extensive line up of what is worth the time for Netflix.


----------



## duh panda

nogutsnoglory said:


> Anyone goto crohns support groups? Why is everyone so old. I know a lot of us younger folks have it but do people our age just not wanting support. So frustrating!


I think no one our age goes because they are always at the most inconvenient times. Not that there is ever a "convenient" time with crohn's but 7:00 on a weeknight? I'm probably already in my Pj's due to low energy and if I'm not I'm at least thinking about it and wanting to spend that last alert hour or two of my day as it overlaps with that of my loved ones.


----------



## nogutsnoglory

Well I gotta say since I posted that I have met a number of people my age at IBD groups. Maybe they heard my call


----------



## SunshineSam

This is so great to have stumbled across this group. Ive recently had to quit college and move back home, where in i had my first hospitalization (with lovely steroid drip) followed by picc line, tpn, the whole deal. Currently weening off that beloved drug Predanazone, waiting for my bout with a drug called Humira. 

Anyone out there have stories and relationships to the horrors of meds and their side effects?

Crohns Suffer 2.4.14, effecting entire small and large intest.
Guttate Psorisis.
Just broke free of picc line and tpn
Florida Native


----------



## SunshineSam

LCATC945 said:


> I would see if your dr would allow you to switch to Humira. But also remember this, at 17 your eyes are still growing and changing. It could just be a coincidence that they happened at the same time.



any advance tips? Starting Humira this week, if insurance gets their shit together


----------



## SunshineSam

One thing i want to know is, will i ever feel my age again? The fatigue, the always being sick, weak. I pushed myself to get a job, having been on bed rest for almost three months...but even that is so hard to physically do. But i cant very well put it off any longer..what if this is all the energy ill ever get? What if this is my normal now? I already-was pulled from my life at college and been cared for by my family, i cant stand to not be self sufficient any longer.


----------



## SunshineSam

any tips on drinking? Im a hard cider fan...but i believe it works against me. Wine, i havnt tried since my recent flare.


----------



## duh panda

Hey Sunshine! Glad to see you're on here and taking an active part in treating your disease - certainly the right track to be on. 

No major horror stories from med. side effects for me. Occasionally things get a bit screwy (Currently Flagyl has been causing some nerve pain and numbness in extremities). My biggest issue has been a lack of response to medications so I've worked my way through just about everything while remaining steroid dependent for the majority of the past 9 years since diagnosis and experiencing a lot of extra-intestinal manifestations in my bones/ joints and skin which have made it difficult to impossible to walk/ stand without assistance for weeks to months at a time. 

One thing that has helped me when I'm getting frustrated with fatigue and lack of energy and the help I often require from family/ my S.O. is to remember that everyone is tired by the end of the day regardless of how their day may start or where their abilities may lie. While some days I feel like this must be how 50 feels, I remind myself I'm not 50 - just 24 with Crohn's - no younger no older - and I won't know what 50's really like until I'm there. 

Something that has really helped me to feeling self-sufficient despite requiring regular assistance in meeting daily needs was to get onto SSI disability. I was able to get through college Ok (withdrew one semester and required hospitalization) and worked with instructors so I did a lot of work off campus and submitted to their email, but trying to work full time after college to make ends meet went south very quickly. 

Due to being hospitalized, on TPN, steroids, etc. you would be a good candidate for SSI. It's not much, but having that source of income has allowed me some semblance of independence again and with SSI comes medicaid which for me has dropped my monthly medical costs from over 400/ mo. to under 100. Being able to meet my own medical needs for the first time since diagnosis has been huge in feeling increasingly self-sufficient. 

As for drinking I can't comment on the cider front because I've never liked the stuff. A glass of wine or a whiskey coke (I'm a sucker for whiskey) doesn't seem to be too much of a bother but beer can be mighty troublesome especially the darker ones. Although much of diet/ drink preferences just comes with trial and error and I swear it can change weekly/ monthly especially during flares. I tend to avoid drinking in general during a flare but make sure you check with your Dr. regarding what meds. you're on because alcohol can interfere with effectiveness, can add additional tax on the liver, or for some anti-biotics the most minuscule amount can result in nausea beyond belief.


----------



## gadgetninjette91

23 here, just diagnosed with Crohn's of the jejunum and ileum two days ago (but was suspected for a good four months after a colonoscopy with characteristic inflammation in the ileum with a completely normal colon). Saw a terrible doctor at first (though I do have to thank him for performing that colonoscopy and being on the right track at first but missed other signs and screwed up my chart...long story short, here I am with this fairly uncommon presentation of Crohn's disease. Just started Pentasa today, been having all kinds of mixed feelings about the new diagnosis. But staying strong nonetheless.


----------



## SarahBear

SunshineSam said:


> One thing i want to know is, will i ever feel my age again? The fatigue, the always being sick, weak. I pushed myself to get a job, having been on bed rest for almost three months...but even that is so hard to physically do. But i cant very well put it off any longer..what if this is all the energy ill ever get? What if this is my normal now? I already-was pulled from my life at college and been cared for by my family, i cant stand to not be self sufficient any longer.


When were you diagnosed?  Are you still flaring, or going into remission?

Things will get better.  Once you're in a stable remission, you'll very likely feel normal.  In remission, you may still have symptoms, but they'll likely be mild and infrequent.  In spite of my occasional symptoms, I feel normal now.  Of course, you'll always have to take some precautions - watching what you eat, paying more attention to your body / symptoms, doctor's appointments, remembering medications, etc. but when it comes down to it, the vast majority of people, no matter what their health, do at least some of those things.  It shouldn't interfere with your life.

What kind of job do you have?

Vitamin levels can play a huge part in energy levels, so if yours haven't been checked lately, you might want to request it.



> any tips on drinking? Im a hard cider fan...but i believe it works against me. Wine, i havnt tried since my recent flare.


You might want to try small amounts of various things to see if there are any that don't bother you.  Personally, I'm okay with anything that I've had several times previously in the last six months or so.  If I try something new, it sometimes causes stomach pain the next day.  Unfortunately, there was a bit of an adjustment period.  I pushed through it because I was in remission - if you're not, you may want to either wait or proceed very slowly and cautiously. 

:hug:


----------



## duh panda

I started a thread to hopefully hear from both those with crohn's and those who live with us and help care for us. I feel it can be difficult to learn how to navigate managing crohn's independently and within our relationships - specifically romantic long-term relationships at any age, but especially difficult as young adults.

I mean really, how do you communicate to your 20-something S.O. the dangers and possibilities, how do you communicate the needs without stepping on their toes or taking away from the other aspects that make a romantic relationship what it is. I have boomeranged between transitioning from pediatrics and my mother's care to working toward independent care, yet being in a long-term relationship for the majority of my young adult life and working together to determine his place in all of it. Would love to hear the voices of others who are young and working to learn to find that balance - and if you have someone who lives with you and helps with your care and disease management, their voice too. Here's the thread link:

http://www.crohnsforum.com/showthread.php?t=71970


----------



## niki27

hey i'm niki I was diagnosed when I was 10 and i'm 20 now love this group _


----------



## SunshineSam

hey guys, so im 21. Started Humira a month ago, had the four starter shots and then have given myself one since. The feeling of a bio changing my genetic makeup is something i hope to get over, but as of now i feel as if im made of glass. This i def a young persons disease, dont go thinking its only older folks. What i keep getting told is that us young people dont want to take the time to care for ourselves, which is partly true. ive been on a vaca from life since the start of 2015 and im just about fed up and not even close to my remission yet =( i gave up my beautiful little college life, my little apartment, all my friends and moved hours away for this treatment and to get my body back in good health. its hard....but we have to remember if we dont take care meow we wont be here long enough to actually enjoy the lives we are fighting to have!

Nameste! Sam


----------



## Hattie95

Hey Sam! That is very true what you say about taking care of ourselves now! I already feel like I have the body of an 80 year old with painful joints and everything else. But it's important to remember that we're still young and have our whole lives ahead of us! 
That's really sad that you had to give up college. [emoji17]Do you plan to try go back once you get into remission? I wish you the best of luck with whatever you do! 
Oh by the way, how is the humira working for you??


----------



## sara88

Hi Sam! 
Best of luck to you and let us know how the Humaira works out..that's most likely what I will be going on too..you are so right we do need to take care of ourselves. I'm 27 and feel like I'm 72..I was diagnosed in March and I may already be going for surgery July 10 ..best of luck to you. Xo


----------



## SunshineSam

So back in Feb i was hospitalized for the first time for my crohns, and since then have been on predanazone and recently started my Humira injections....my question to the group is....as dumb as i know this will sound, im mega depressed because i have gained so much weight and look so different from my pre flare self =( im so used to being a care free spirit that didnt care about her looks and focused on other things much more worthy of her time...but now i just get a horrid pang everytime i look in the mirror, and i have to buy and sew all new clothing...im so happy im alive, but im so different, even my likes and dis likes in food. 

how do you re adjust to you again guys? Once im strong again i plan to work out....but i have no idea when that will be, if ever


----------



## SunshineSam

and!! so sorry, i cant seem to figure out how to post, or reply...i think i might have replyed and not posted? not too sure....but i do eventually see the well wishes and kind words <3 thanks all. Humira is going ok, alot of scary new pain, i feel like i am made of glass >_<


----------



## anmonk

Hi Sam,  talking about readjustments?? It's been 3 years since I was diagnosed with crohn's and eventually underwent intestinal resection surgery.....I had to defer from academics twice.......and yet I am not sure how well I have readjusted myself. ....although I have made a lot of lifestyle changes.....I quit smoking, drinking and junk food completely.....staying away from junk food was actually tough since I was a big foodie. ...I indulge in junk food rarely but pay huge price for it later in the restroom :/ .After so many lifestyle changes i am still going through a very bad flare up again. ...i feel  how many changes I make its just not sufficient !!
All that I can say is that, It takes time and  lot of will power to commit to the changes you make in your lifestyle. Once you make the changes at least you don't feel guilty while you go through a flare up because you know it's not your mistake, it's just the nature of crohn's.....


----------



## duh panda

anmonk said:


> All that I can say is that, It takes time and  lot of will power to commit to the changes you make in your lifestyle. Once you make the changes at least you don't feel guilty while you go through a flare up because you know it's not your mistake, it's just the nature of crohn's.....


This is so true. I often find I get frustrated because I feel like I've lost/ changed so much to try to have a life I can enjoy and be proud of and still 8 years later the disease continues to rage/ be unmanageable. Early on in my diagnosis lifestyle changes were made in the hopes of managing/ helping things along. I looked at them as temporary. Sometimes it just doesn't work that way. I am certainly more diligent now when it comes to doing what needs to be done for diet, nutrition, and maintaining a sense of overall well-being despite active disease but such efforts provide more of peace of mind then relief from the disease itself.


----------



## SunshineSam

Any other peeps on here taking their treatment and dosage into their own hands? Im starting to taper my Predanazone, cant stand the shakes anymore and how weak ive been. Havnt seen my doc in months, she and my nurses are waiting to see the results of the Humira in the 8th week, im on week 5 now and plan to taper the steroids down till the 8th week. 

What do you guys think? You know your body better than a stranger with tests, also you never know what will Actually happen till you try. Tried a taco lastnight =D didnt hurt and made my mind happy so i believe it was worth the risk.


----------



## anmonk

I guess it's always better if you meet your GI before starting to taper down the dosage. Even though the symptoms don't show up there is always a possibility that the disease activity might still persists within and the symptoms are suppressed by your meds. I tried to taper down the dosage once when i felt i was completely normal. I eventually stopped my meds completely. I felt really good, din't have any symptoms. But, all this lasted only till one month after which my symptoms began to show up. When i visited my GI and got my blood test done, the results were haywire my inflammatory markers were shooting up.

So i would suggest that you take your GI suggestion and get your tests done before trying anything.


----------



## duh panda

I haven't always found it necessary to meet with my GI doc. before moving forward with adjusting meds, but we've been working together for ages and I have often lived 3 hours plus away from her location so there wasn't always this level of trust that each party will do what's needed on their end to make things happen.

That said, I've always found it important to be in communication with her about what I'm feeling, what I want to happen, and what I am/ will be doing. 

Whether that was coming out and letting her know I smoked weed almost daily in college and managed better during those times, was getting involved in yoga, or was going to try to taper prednisone to see what happened it's important to keep your doc. informed. A GI doc. can't necessarily advocate or comment on any drug use or poor health habits, they can't necessarily tell you what exercise is or isn't right for you, their focus is on the gut and disease and that is what they treat. However, being open about other aspects in how you manage disease beyond traditional medicine can be important in how they view you as a patient and how they approach you as a patient. 

On the other hand, there have been times when the doc. will push for adjustments (I've been steroid dependent for almost 2 years) I'll start out following her taper plan etc. but usually I'll end up slowing it down to avoid taper side-effects and ensure I'm not crashing my system and giving plenty of time for the adrenals to wake up so if the taper isn't going well I can tell it's the crohn's and not just medication withdrawal effects needing to wear off. I've been known to slow it down and not say anything then when asked be like... "oh yeah, about that.... should be off but just managed to get down to 10mg before noticing symptoms creeping back, etc." 

I've always figured a medical team should follow me, not the other way around. I try to walk into appointments or contact them to ask questions regarding treatment options or concerns, pick their brains about what some options are, then determine what I would like to pursue according to how I believe that particular course of treatment can help me achieve my goals for improved well-being and dream for remission. If i'm communicating via email or phone with my doc. I write down questions, concerns etc. before making the call so I can hit it all in one go, but if more questions crop up I'll call with those too. There have been days where I might spend 3 or 4 calls if scattered, but I never feel bad since I figure that's what they're getting paid for and that's why there's an entire team/ staff and not just a single dr. doing it all. 

I have never not taken medications or followed through on the treatment plans i've chosen to pursue over the years - spent 2 months hospitalized on TPN and 80mg prednisone and some other stuff I can't remember that didn't work anyways and it's served as a good lesson for where I never want to be again. There's something about wasting away to the point of being unable to walk a flight of stairs, bathe oneself, or eat for months, all followed by the not so great pleasure of morphine withdrawal that has really stuck with me. 

I have gotten close to landing there again recently - since even with medication raging can be the nature of the disease - but I'm alive, I've managed to stay out of hospitals by engaging the help of my medical team and family/ friends - and have my doctor's trust where I can call shots like... choosing to hold out on surgery for the hopes of healing to take out less, going "backwards" as a high-risk patient to a previous TNF blocker after working my way through all current available medications once. I don't think I'd have as much control in current treatment and future treatment options if I'd just thrown it out the window when I didn't like the current situation in the past instead of admitting to my doctor when treatment wasn't working for me, for whatever reason - disease activity, side effects, mentally, etc., especially early on learning to live despite disease and manage it regardless of status.


----------



## SunshineSam

Magnolia24 said:


> Welcome Cosmojo. It always makes me feel good to hear from grad students making it work. I'm starting an MFA program this Fall... I'm nervous, but at the same time having to fight a little harder made my goals and priorities that much clearer through the application process, so I also feel good about the path my life is taking.


any tips on "making it work"? I had to leave school for a year to get into remission and am scared i might have to pause my edu again in the future. Do you guys work part time or full time? Are you on any $$ aide?


----------



## SunshineSam

you know what is pissing me off. Googling "how to lose prednisone weight" and the list being made up TOTALLY of foods i cant eat because of my crohns....that and these people are on 10mg or 5mg of pred...really? and your having issues? stfu. 

im angry, every time i attempt a taper my pain comes back...sticking on 25mg till my Humira kicks in. I have all the side effects of pred, though. Moon face, swollen limbs, hump back, gut. My remission is #1 in my life currently, but im losing myself and feel just awful ='(


----------



## duh panda

Keep it up! Frustrations and all the side effects, medications, etc. will come and go. As long as you keep your priorities and attitude you'll get to rocking life again no matter what  it may entail or how the disease changes/ progresses. 

Been on 40mg for majority of the past 2 years with some points being able to taper down to 20mg. Not easy shit, that's for sure - on either the mental or physical front. I hope you are not on it so long where you begin to recognize what responses/ thinking stems from the pred. and which is the "voice" of yourself. 

What does your diet currently look like? 

Some things I've found that helped when I was on 80 mgs for a long period of time and really struggling with appearance was managing meal times more then focusing on what I was eating at that point since it gave me the munchies like no other. Seems like eating every 3-4 hours but having a pre-thought out meal plan to follow really helped halt over-eating/ mindless munching although the thoughts certainly persisted and were very... annoying. Learning how to manage that has really helped with flares since then when I've had to manage life on Prednisone. As for the rest of it - moon face, extra weight, water retention, I didn't see a change in until completely tapered off.... but once it starts to go it generally went quick in my past experiences. 

Also, you're never lost. Even when you may not feel yourself, you are still you. I don't know why but I've found that comforting in the past... like there's no guidelines/ constraints on who I can be so I choose to be me - whatever that may entail, even the less desirable bits I don't like - at any given time.


----------



## SunshineSam

i mainly try and stick to slow sodium diet. If i eat something "normal" within the hour i feel like beat max walking around (big hero 6). I already have high cheek bones so when i get extreme moon face i cant see when i smile, i laugh it off but its hard....Honestly, while im on pred 25mg i just stick to liquid diet or bolthouse shakes or my own homemade protein shakes, maby eat one to twice solid foods daily but i dont push it for feeling so il when i do.


----------



## duh panda

So frustrated with family and hearing the phrase "Let it Go". Frozen certainly hasn't helped make this phrase land in my top 10 "acceptable responses that exhibit support". 

Back to living with mom to manage Remicade loading doses while working out some kinks with transferring care between states (apparently, it's a shit-show going from private to government healthcare and finding a doc that'll answer, let alone return calls). Appreciative to have family, but frankly peeved beyond belief that this is even necessary. No matter how hard I try to be placid, and wait it out, each visit back to CO lasts just long enough to remind me of what it feels like to be independent, managing my own life, and FUNCTIONING as a grown ass adult. Nothing like returning to a town of 1000 people and no vehicle access where the closest city and my health care is over 3 hours drive (one way) to serve as reinforcement that while I appreciate having a place to live.... it's not where I want it to be. While everyone else seems to see this as an issue - or lack of gratitude - I call it motivation.

A Year of going back and forth to visit my S.O. 1000 miles away combined with being told repeatedly that it's nice to "have me back" (since apparently I've been lost the past 5 years? However THAT works) combined with responses such as "you gotta do what you gotta do" and to "let it go" or "you are on a wonderful journey, enjoy it" leaves me wanting to strangle someone, something, or a combo of both. Apparently I'm only "me" (Or at least the me my family prefers because it reminds them of me when I was roughly 8 years old) when I feel like shit, am having to show a highly uncharacteristic level of patience, need assistance with daily tasks, haven't been laid in months, and had to take an undesired hiatus from a career I have yet the opportunity to start. Hmmm, funny because this keyed up, anxious, pain riddled, sarcastic person is personally my least favorite version of myself.

Anyone else get frustrated over being told they aren't themselves when flaring/ not feeling well? Cuz this one gets me, and it always seems to come from those closest to me and I have yet to find a reply/ response that is considerate rather then snarky.


----------



## duh panda

SunshineSam said:


> any tips on "making it work"? I had to leave school for a year to get into remission and am scared i might have to pause my edu again in the future. Do you guys work part time or full time? Are you on any $$ aide?


Figured I'd answer since it doesn't look like anyone has yet.

I did not work through college - haven't even been able to hold a job for longer then a year (even post graduation) due to disease activity. 

I relied on receiving grants and scholarships while attending out-of-state. This primarily paid for my schooling with some funds received after that helped offset living costs. 

Withdrawing due to medical reasons (regardless of how many times) should not affect whether or not you qualify for those same grants/ scholarships in a future semester. 

I did take out 7k in student loans over the course of 4 years since I didn't have an income or savings to rely on. Due to being unable to maintain working post-graduation I've applied for a total disability discharge on all student loans.

This may not be the most realistic considering I squatted in an apartment for the last year, friends helped support through providing group meals, I did not own a vehicle/ pay for car insurance, I did not shop/ buy clothing new during my time in college, my mom covered my medical insurance and wrote of 750.00 in a personal loan upon graduation, and I worked with most professors so I could miss classes without negative consequences, etc. My living costs during college were generally around 400.00-800.00/ month depending on the term, where I was living at the time, and what medical was requiring of me at the time.

On the financial front it really comes down to why you are attending higher education, where you hope to be/ go after school, the status of living you want to maintain during college, etc. Part time work could help you qualify for assistance programs which might work better long run in managing financial stress.


----------



## SunshineSam

Panda, all i can say about moving home, i wouldnt have been able to stand it were it not for my mother who is my best and closest friend. She understood the emotional side effects before i even knew what was going on, shes been here to listen to all my aches and helps me find solutions when i am stressed, shes my advocate over all. all i can say is that if you dont have a person like this, find one, even if its a doc appointed psych you  need someone on your side, someone at those appointments someone to just be there....i to this day keep saying *no no dont worry i can take myself* and yet when i get to the waitingroom i wish i had accepted the company.


----------



## duh panda

So so true  not sure where I'd be without my mom. She's at all my appointments, is my everything and has been there every step of the way, but she's had to learn to share me with my s.o. which I don't think she ever did despite that he had taken over with assistance things and being my second set of ears primarily up until this last year or so when things slipped too far to do it alone or afford all the costs and time on one income. She helps a ton but we still have some friction, especially right after I keep finding myself returning home. Tends to take a couple days to both settle a bit lol since its not my goal to live with mom and it's not hers either but we have different ideas on how those frustrations should be managed. I'm more vent and move forward while she internalized and explodes.

I'm definitely being a bit sluggish (ok annnnd kinda stubborn) getting on board (fingers crossed this one last time) to be home for medical rather then home in a year for a good not doctor centered visit like I'd left intending in May. This week I am about ready to set her loose on the docs offices I've been trying to make contact with to see if she can get somewhere with them that I've been unable to.


----------



## SunshineSam

most fustrating thing is the fight with docs, im sorry your going through that. im in the fight with meds, @6mo mark on Pred, Humira is in its 8th week and i want to taper off Pred but i flare again when i try....mre was yesterday and 3rd colonoscopy was clear =) 

its hard to get back out when youve been in healing mode, your wanting to get out there again soon though i can tell right? My goal is after Sept, i have roommates lined up, attempting to get on disability, and if i can nab that ill move for sure but if not....idk. Mainly its about staying in remission once i am. This year was so extreme with how far out i was taken by this disease i hope that this will be the worst ill ever see, and ill live the rest of my life knowing how to care for myself, and never be taken this far down again....also hopfully shall find a partner willing to endure with me, dating sucks man.


----------



## duh panda

Ug, getting off of prednisone is difficult for sure. I've been steroid dependent for a while and fighting infections - weird how the prednisone side-effects have been acting this time around. I think it's the antibiotics but the moon face has been very... unpredictable. It'll show up, then settle down, then show back up but my left cheek is always a little fuller then the right no matter what stage it's at. 

I handed the doc info over to my mom and she left a pretty cold message. I'd be willing to bet my next disability check that the doc. never returns the call. Having left 2 weeks worth of messages myself and only hearing from her when she actually picked up the phone by chance makes me think those would be good betting odds. It was satisfying though to not be the one leaving the message. I just kept thinking, ha! That's what you get for being poor in the communication department - dealing with my mother's wrath.

Humira was the most successful for me - I saw a solid 2 years where I was able to get into a good groove, get through undergraduate studies, and really find my feet for the first time as an adult. I wasn't in remission but it was managed well enough where I felt like I was keeping pace with everyone else my age 80% of the time. You are so right about wanting to get back out there again! Just thinking about it makes me all excited and antsy lol

Luckily I've never really dated with crohn's. My S.O. was first a close friend but once we took that step we've just never let go of each other since. Before him no one had ever really caught my eye and I wasn't interested in the amount of energy/ time it appeared a romantic relationship entailed. 

My goal was initially December... but that ship sailed long ago. September is set as a deadline instead of goal since everything is set but the docs. and my current GI has mentioned being willing to provide anything needed/ she can even if I'm no longer under her care. 

The hardest part in maintaining wellness when I don't have full-time support at home has always been reminding myself that even if I'm working on a project or have things to do my health comes first and that includes eating properly and on time (eating always slips my mind when my attention is engaged elsewhere - which is often). 

I've been using this extensive time at home to develop a recipe binder and menu planing/ grocery planning printable sheet so each week I can flip through and pick a couple meals, look at what's needed, list out what ingredients are needed, scan local sales, then just make one trip. This combined with a plan for establishing a solid freezer food store to pull from for days when I find myself crashing early gives me the feeling of a solid foundation where even on my worst days I'll be able to meet my basic needs with minimal to no help. It's the little things that add up and wear me down making it so hard to do it all when I do/ have lived independently. So far this has been hugely successful when I've gone for "test" independence runs. This last was 5 weeks and much better then past attempts - was able to maintain weight which doesn't mean much since it's dependent on so much besides stress and responsibilities - but is a good initial sign!

I hope that you see the best with Humira (SOON!) and it works for decades to come  And a partner who isn't just willing to endure with you - but EXCITED to stand with you and face whatever may come by your side.


----------



## Elektrikhd

So I just turned 31 a couple of days ago...I probably don't count as a young adult anymore. (And my body feels much older, but that's most if not all of us.)


----------



## duh panda

I'll count it! Gives me a good while yet here that way  How's it going Elktrikhd - apart from feeling older then your number. And A Happy Late Birthday!


----------



## Elektrikhd

Thanks! If nothing else I'm still young in my head 
Things are...going. I'm slowly still getting over a flare-up that started in December or so and worsened in March landing me in the hospital for a week. Work has let out for the summer (teaching), so I'm getting to rest more again. But I'm also quitting because it's just too much for me to deal with anymore, so I have some more work ahead of me, looking into disability and other job options in case disability isn't for me at this time. I was close to quitting last year, and it's only gotten worse. But there are still some positives in my life. 3 years with my boyfriend and it's still going well. Plus now if we feel like getting married, we can do that anywhere we go, not just in our own state. Other things are small by comparison...I like my car, our apartment has 2 bathrooms, and I have video games to play.


----------



## duh panda

Glad to hear you're in a place to be able to start resting up a bit, life is otherwise pretty good, and you're still feeling young in the head! Sometimes I wonder if I'll ever really feel my age mentally or if it'll always feel younger, I like to think it's from my sense of humor, (potty-jokes were frequent in my house growing up and often encouraged at the table, never really grown out of that!) and general optimism regardless of circumstance  

When I applied for disability last June (finally approved in April) when I finally decided my employment wasn't optimal for myself, my co-workers, our clients, or the business,  the primary contributing aspects to getting approved seemed to be suffering from chronic malnutrition leading to fatigue, exhaustion, etc. in addition to the pain, bathroom needs, and frequent infections/ immune deficiency issues and poor response(s) to medical treatment. However, if there had been a hospitalization that could have made the process for approval a bit faster (all though of course it all depends on the state, and who is looking over all the medical records making that determination). 

I found it very helpful to have my G.I. physician to write a letter to help support the claim, and to call monthly to check where things were (they never sent out a letter at one point, so things fall through the cracks frequently). I remember the stress of continuing to look for a job in case I wasn't approved too which was a stress all its own. The last few months in comparison to that waiting period have been such a break mentally, I hope the process goes quickly so you're not stuck in limbo long.


----------



## Elektrikhd

I returned to work after the hospitalization in March. I had a week of home rest, and then our spring break was the following week, so I had two weeks at home, and I really needed it. But it was really rough going back to work, and really I needed more time. Most weeks I wound up having to stay home a day or two because I was too fatigued or in too much pain or running to the bathroom too often (or sometimes just too stressed out and depressed to face work).

Today I cleaned my bathroom (there really wasn't that much to do), cleaned the stove, and did laundry. I'm exhausted. Of course, I've also barely eaten, too, so that's probably part of the problem. But it's a good sign that the prednisone is low enough now that my appetite isn't constantly out of control.


----------



## duh panda

That sounds like a full day to me, the exhaustion is brutal. I remember before when things weren't in remission but at least managed and I could do the entire apartment in one swoop and still have enough energy to meet up with friends or go out for a bit in the evenings. Still usually was burnt out the next day a bit but fully functional and wasn't always needing to rest. Now, it's one chore/ room a day and afternoon naps or if I push it I'm asleep for the night by 8 with next day repurcussions. I think exhaustion and fatigue is my most despised symptom since its so unrelenting.


----------



## Elektrikhd

I'm still not used to my limited energy. I've always felt like I had less energy than most other people, but I still think I used to have more energy than I do now. I did a lot less today and I'm still kindof tired.


----------



## SunshineSam

being young, with a disease, really sucks. Over the past half a year ive been strong. But today i am not so much. Seeing all my friends on facebook living, experiencing, going out and just Doing what young people do. Seeing my siblings and my twin brother in school when ive had to be out a year now, seeing your crush move on because you cant commit to another person right now because you need all you have to give....remission is close, and i know i matter and believe you me ive said all these things over and over in my head over the past months....but none of it will take away the sadness that is laying on your back with withdrawls of your medication, on the 4th of july....remission cant come soon enough, i miss my life, my body, my joy.

can anyone comment saying they can relate?


----------



## duh panda

Sadly, I think more can relate then we know. There are many more then those who have reached out through the forum or participate through youth programs like camp oasis. I don't think the days when negativity is crushing are days of weakness, just a different more quiet display of strength. 

A big turning point for me has been to not aim for remission. Doing to has taken so much pressure off and rather then feeling like I'm waiting for life to resume it feels like I never stop living getting to enjoy the good moments, display strength, and power through the tough days (like canceling plans with friends due to being exhausted from spending a day counting the bathroom tiles.. over.. and over... and over because my kindle always runs out of juice when I need it most. I'm sure you're pickin up what I'm puttin down :drink

When I'm sad about missing out on things, I think about how many people don't drink, party, travel; don't lead lives like the world seems to think all young people lead and they aren't dealing with chronic illness. Card games and board games, gaming, movie marathons and Netflix binging, playing with food in the kitchen, reading books and nerding out over made up lands and people, stepping out to walk through a sprinkler rather then an all day outing is just as prevalent. 

I'm trying not to dwell on the bbq foods, drinking games, outdoor entertainment like swimming at the lake I'd probably be enjoying if I were celebrating today with my S.O. In the city instead of in rural eastern Oregon smoked out by fires and locked inside from the heat. I'm spending the day laying low with mom and sis and will enjoy some chicken, baked potatoes, and homemade ice cream later. I love these women to pieces and their chill, less demanding company. as much fun as full blown celebration would be, at least for a bit, I know the after effects would last days which is always more discouraging then I've found such choices to be worthwhile.

 The most frustrating for me is that I'm finally feeling better, having gotten a series of infections under control after nearly 8 months, and have moved back to Remicade starting my loading doses recently.  A week and a half ago I was punching walls mad and deeply saddened due to having to extend my time in Oregon and further delay getting "back to life" with my love. I actually want to get out and want to socialize a bit, but have to stay patient a couple more months and still keep smart about the choices I make and the repercussions they can carry. This summer will be the 3rd time being unable to spend my s.o.'s b'day with him due to needing to prioritize health in 6 years. It makes me sad that I often can't be there for others in many ways, but I look forward to giving back as I'm able whenever I'm able every day because my experiences give me a lot to offer that others can't. 

Happy 4th SunshineSam!


----------



## Elektrikhd

I can relate to some of those things, especially seeing people going out and doing stuff. I'll look at Facebook on a Friday night when I'm getting ready for bed because I'm really tired, and see people from work posting that they're out somewhere drinking or something like that. And they're usually people 10 years older than me.


----------



## Colette_osiris

Hi everyone! I'm 14, and I'm new to the forum. I got diagnosed with Crohn's Disease a few months ago, because of severe pain in my abdomen that nearly sent me to the hospital, and left me bedridden for a couple of weeks. When I went to the bathroom, or the pain would come, it would be so bad I'd just lay there, and I'd be shaking when it finally went away. After about a week, I connected the dots that when I ate food, the pain got worse, so I started to eat as little as possible, and days after that I wouldn't eat at all. My apatite was completely diminished. My mom immediately scheduled an appointment with a pediatric G.I. , as soon as she realized something was really wrong, and I had an endoscopy and colonoscopy about a week later. 

The doctor found some 750-1000 bleeding ulcers throughout my intestines and a few in my stomach. Beyond that, the color of my colon was a darkish gray, not pink. After a blood test, it also turned out I was very anemic. My doctor immediately put me on 60 mgs. of predisone, and on Apriso, as well as an iron supplement. He set me up for blood tests and doctor visits every couple of months. During the follow up of the procedure, I learned that because I had constipation instead of diarrhea my pain was a lot more extreme than some people's. After a little while, the meds started to really help(although the weight gain from prednisone was a little annoying), and I was ready to back to school. But, when I returned to school after a month of laying in bed sick and in pain, my administrators treated me like I had purposefully been slacking.  Even after my parents explained the situation, they still insisted on me atleast trying to finish all that months work by the end of the next week, while keeping up with my current school work. (At my school, the average homework is an hour and a half plus my missed assignments). I was so overwhelmed, but I wasn't sure what else to do, so I over-exerted myself, and ended up bed ridden for a week...again. It was really so frustrating, they weren't even making an effort to understand. Has anyone else experienced that?

Anyway, now I'm pretty under control, thanks to my doctor, and my mom. My mom has UC, so I was lucky to have someone who atleast sorta understood. She really helped me figure out what I should cut out of my diet. But unfortunately (in my opinion), my parents went a little overboard. They went on all these different websites looking at triggers. They are think Crohn's Disease is totally food-based. Now as a result,  I don't eat anything with gluten, chemicals (this includes anything with natural and unnatural flavoring and corn syrup, which is in EVERYTHING), preservatives, corn, raw vegetables, soy, anything fried, and because I'm borderline lactose intolerant, rarely dairy. My parents also try to limit the amount of red meat, because they are worried it'll be to hard to digest or something. Now I don't want to sound like I'm complaining too much, because it's worked so far, (no flares) but I'm kind of worried about malnutrition. Do you think all of that is necessary? And what to you guys eat to control your symptoms? Is there anything else that helps besides diet and exercise?

In addition, because they think that this is entirely a dietary problem, they want to talk about taking me off my medication soon. (I've finished predisone, but I'm supposed to stay on Apriso pretty much my whole life.) I'm scared that if they take me off of it, I'm going to have another flare, which I want to avoid at all costs. And because the timeline of when they take me off of it is right when I start high school, I'm scared I'm gonna start of my high school with a flare. Which. Would. Suck. What do you guys think? Is that a good idea? Did you're symptoms reappear after stopping medication?

I also don't really wanna tell really anyone besides the nurse about Crohn's, because I just feel like it's kind of embarrassing, and I don't want people to think I'm asking for attention because I tell them there's something wrong with me. I've told a few close friends, and they are supportive but they don't really get it. So for anyone out there who went through high school with Crohn's, how did you handle it, and who did you tell? Did you need any special arrangements? What did you tell people when you missed school because of a flare?

Thank you to anyone who actually bothered to read this whole thing. I know it's really long, and I have a lot of questions. I just really wanted to relate to some people who know what I'm going through.


----------



## duh panda

When diet gets very restricted malnutrition can be an issue with micronutrients even if you're meeting your macro nutritional needs (fats/carbs/protein). Before going extreme with supplements talk to your g.I. and have them run blood work to check for any nutritional deficiencies and your parents may wish to also see an allergy panel ran to check for food and environment sensitivities. Diet has never been proven to cause or cure crohns but extra stress on the body can make everything function at a less optimal point.

 I think your concerns about going off of all meds is very serious. It can be that your parents are having a hard time accepting what a chronic disease can mean. Perhaps it would be worth meeting with a psychologist who specializes in chronic illness and inviting your parents into the sessions. When adults challenge my course of treatment, even now at 24, I find it can be challenging to remain a strong advocate for myself and it can cause a lot of self doubt. You are right to be concerned because even if you find symptoms are decreased through diet and lifestyle changes alone, disease activity can remain present leading to other issues aside from ulceration such as stricturing, abnormal tissue growth, etc. These risks are a defining difference in uc vs. Crohns. 

I'll pm you a bit more about my personal experience as I was diagnosed in high school but i thought others might find that response helpful.


----------



## Caitlin84

SunshineSam said:


> being young, with a disease, really sucks. Over the past half a year ive been strong. But today i am not so much. Seeing all my friends on facebook living, experiencing, going out and just Doing what young people do. Seeing my siblings and my twin brother in school when ive had to be out a year now, seeing your crush move on because you cant commit to another person right now because you need all you have to give....remission is close, and i know i matter and believe you me ive said all these things over and over in my head over the past months....but none of it will take away the sadness that is laying on your back with withdrawls of your medication, on the 4th of july....remission cant come soon enough, i miss my life, my body, my joy.
> 
> can anyone comment saying they can relate?



It is really hard. There is just no way around that. I do truly think time and perspective help, and unfortunately you can't rush those. I'm sicker right now than I've ever been, and really want to be able to be out doing things. I want to celebrate fourth of July with my kids, watch the World Cup in a bar with friends, go on a date with my hubby, go to work even, not be organizing my day around naps and pain meds. Having been through this several times though, it is a little easier for me because I know that these down times help me to appreciate things more when they are going well. The lows are lower, but I think my highs are higher as well. 

Prednisone just sucks. :stinks: I hate it with a passion, but it is also very effective. Be careful tapering that one on your own. I totally understand the temptation. As for prednisone weight, give it time. Your body will truly work to level itself back out again once the rest of your health is stabilized. We just don't live in a very forgiving society. I love the Healthy at Every Size Book and Harriet Brown's Body of Truth. I'm a happier healthy person for those books.

Hang in there. :dusty:


----------



## Caitlin84

SunshineSam said:


> you know what is pissing me off. Googling "how to lose prednisone weight" and the list being made up TOTALLY of foods i cant eat because of my crohns....that and these people are on 10mg or 5mg of pred...really? and your having issues? stfu.
> 
> im angry, every time i attempt a taper my pain comes back...sticking on 25mg till my Humira kicks in. I have all the side effects of pred, though. Moon face, swollen limbs, hump back, gut. My remission is #1 in my life currently, but im losing myself and feel just awful ='(


I was on prednisone when I got engaged. At the time it felt like the end of the world. I had the moon face, hump back, everything. It was awful. All I can say is try not to dwell on it. I know its soo hard, but it only makes things worse.


----------



## duh panda

Caitlin, your posts are so well put and thoughtful.

Definitely going to be one to check out that book suggestion. I wish it wasn't true but I think body image is such a struggle after diagnosis and meds. - even being around the block several times it seems, at least in my experience, every flare results in a "new" body that requires its own process of acceptance.


----------



## Elektrikhd

Colette_osiris - Starting high school with Crohn's is a lot of stuff to be dealing with all at once. Mine didn't kick in until after I was out of school, so I can't give any direct input on that situation. Although coincidentally I'm a teacher, and I've missed work because of a flare-up and a year before because of a bad case of Lyme disease, and administration was not understanding in my case, either, and seemed to expect me to really hit the ground running when I came back to work, despite me telling them I was not back to 100%, just well enough to make it to work.

You'll always have people who want to tell you how to "fix" your condition, but you'll quickly become more confident about knowing what's right for you. Crohn's seems to manifest differently for different people. Some of us are lactose intolerant (myself included), some don't really seem to have any trouble with dairy at all. Corn, strangely, doesn't really bother me, but I cannot digest peas at all.

Advocating for yourself and your health can be a lot of work, and before you're 18 it's harder. Don't be afraid to speak up during doctor's appointments and ask questions. Whatever your parents may be doing right now, is ultimately because they're concerned for your health, as frustrating as it may be, or maybe even misguided. So I'd say rely on your doctors. UC and Crohn's are similar, but not identical. Even two cases of Crohn's aren't necessarily going to be identical. Doctors can make mistakes, too, but they're supposed to be well-informed on these things.

I don't usually have much hesitation in telling people that I have Crohn's, but I seem to be unusual in that. When I missed work for my flare up this year, and for the Lyme disease last year, people didn't really ask much about it. Maybe word had already gotten around from my friends who I had told or from administration when I let them know what was going on, or maybe most of my coworkers just don't care. You can probably just say you've been really sick and most people will leave it at that, if they ask where you've been.


----------



## sparkles

Sea_Star said:


> How many of you are over 21 and have yet to go on a date or be in a relationship?


meeee! I'm 21 and never been in a relationship! I'm too scared they'll find my bag gross to get too close to anyone... I'm too embarrassed of myself which is awful I know :/ This forum has been really encouraging and inspiring though


----------



## SunshineSam

Sparkles, i suggest you go out on a date or two, see how you truly feel. im not really ashamed of my condition or embarrass *yay leo* however i found that i genuinely dislike dating and have decided to just take a break from it for now. Also, remember everyone has their nasty something in this life, sure your is a bag...but some people lack limbs or have a organ missing. Your still worth so much Sparkles <3 much love


----------



## SunshineSam

Today i lost some of my resolve, Today everything caught up to me. Im finally in remission, tapering off all my hard meds and i can see the end. Looking in the mirror my once normal 21yr old body looks like a battle field. i have stretchmarks from the lbs the steroids gave me, i have track marks from iv's, bruises from recent blood trials, my cheek bones are returning from the effects of "moon face", psorisis is having a time eating me alive...but i made it, and though it really hurts daily, i am starting to re gain feeling in my body again (Prednisone is hell man). Honestly, it feels like my life is in the stage that resembles a sigh. Big, long, deep sigh....i made it


----------



## duh panda

Keep on trucking along, so good to hear things are progressing well! 

there's always what I view as extras when adjusting back into life and self especially after a difficult fight to hold onto life in general. Dealing with symptoms and medications are one thing - it's discussed when chronic disease is first explained and is quickly realized as experience grows. But repeatedly adjusting to new physical limits or appearance, the physical scars that stick around, that side of chronic illness never really seems to come with a warning. In my 9 years with diagnosis there is a specific sense of mourning and grief that occurs in waves. It doesn't seem to ever come to an end, but the nature of it changes and is never exactly the same twice which is something I'm personally okay with.

Sounds like you've crested a great big hill. Proud of you SunshineSam. Keep on breathing deep and putting one foot in front of the other!


----------



## AnnieYa

Hi, I'm Amy and I'm 21, newbie from the UK. I fell ill late December, got the diagnosis through in May, and it slightly messed up my 3rd year at uni. I'd agreed to a work placement abroad before the illness started, and after having to give up a few plans I had for this year because of Crohn's I was determined to go through with it. 

I'm now in the Netherlands and struggling slightly. I was put on Mezavant in the last few weeks of being on steroids, but they're not working. My UK doctor wanted to move me to Azathioprine but the blood test results didn't come through before I left, so we've upped the Mezavant slightly but I'm still feeling rotten, especially as the day goes on. It's probably slightly pathetic, but with having to come home a lot from uni over this year and then spending whole holidays at home, my dad took a very active role in making sure I ate as much food as he could force down me. Now that it's all up to me it's a bit overwhelming - the sickness dies down slightly so I go to get some food, but by the time I've made something (or often just picked something out of the cupboard) the sickness is really intense again and I can't eat. I've already started losing weight again after finishing the steroids and am terrified that something might happen at work as a result of this flare, even though I've had much worse earlier on in the year and kept up the pretence of coping. 

I'm scared that it will take ages to get in the Dutch healthcare system. I'm scared of what will happen during the time it takes for me to a) see a GP, b) be referred to a specialist, c) them getting my previous medical records. Then there are the questions. What if they don't agree with my UK doctor? What if they want to do all their own tests and waste more time while I continue to suffer?


----------



## Caitlin84

You probably will have to re-do some of the tests. But that gives them a better idea of where you are at right now. I just had a colonoscopy in June and then another one a few days ago. I thought it was a waste of time since they already knew what was going on. Turns out, things had changed quite a bit during the month between scopes. So updated information is usually a good thing.

Hang in there and keep us posted.


----------



## AnnieYa

Caitlin84 said:


> You probably will have to re-do some of the tests. But that gives them a better idea of where you are at right now. I just had a colonoscopy in June and then another one a few days ago. I thought it was a waste of time since they already knew what was going on. Turns out, things had changed quite a bit during the month between scopes. So updated information is usually a good thing.
> 
> Hang in there and keep us posted.


Thanks. I managed to avoid a colonoscopy the last time, had a sigmoidoscopy but I was already 4 weeks into pred. I'm sure it's already been said, but this illness sucks. 

Can I ask about how people tell/explain to their friends? I never know how far to go. I don't want them knowing every last detail but my attempts at 'brushing it off' mean that people think I just have a stomach ache or a certain food intolerance.


----------



## duh panda

Hey Amy. I've always found it helpful to direct friends/ curious people to the ccfa webpage and tell them you're always open to answering questions if you are. Then building off that regarding your experience, symptoms and medications or side effects. 

It provides a pretty clear and non-overwhelming overview of ibd including crohns that acts as a pretty good starting point for others to come up with what they want to know rather then letting you flounder in the dark wondering who wants/ needs more or less info.


----------



## Hattie95

Hey AnnieYa! I moved to the Netherlands last summer for uni from the UK and first got ill this April. I've found the doctors here have been amazing! In case you haven't got round to it yet, the first thing you need is health insurance, I use VGZ and they've been amazing. I've now paid my full excess of 350€ and the rest of my healthcare is now basically free. Then choose a gp you like the look of and turn up and go register. Then once you get an appointment you should be able to get a specialist at the hospital. It's all fairly straightforward as long as you have health insurance. Actually I'm guessing you have an EHIC card? That should do. Good luck, let me know if there's any questions I can answer for you.


----------



## astarks

Hi AnnieYa! Don't feel like it's "pathetic" to have trouble dealing with it all on your own. I had my own issues when I moved away from my family to attend university, and I was only having fairly mild symptoms at the time. When I'm in a real flare and living alone, it's still a struggle. Hang it there! 

I've had trouble before with certain GIs not wanting to believe there's anything wrong with me until they do a colonoscopy themselves, and then, if I'm not in a severe flare, still not entirely believing until they see a full detailed medical record (which as I'm sure we all know, can take some time to get transferred from one place to another). However, sometimes doing new or different tests does turn up useful information. I would just say to get everything scheduled ASAP, and whenever you get to see a doctor there, have everything ready to give him/her (records that you have available, detailed list of symptoms, etc.). I find that coming in to that first appointment well prepared makes all the difference as far as getting things taken care of quickly. 

As for telling friends, I think it changes over time. When I was first hospitalized and diagnosed, I had a number of friends who really wanted to come visit me in the hospital, so they were able to hear firsthand from nurses what was going on. Later, when I wasn't visibly ill, it was a little more complicated. I usually make an effort not to keep it a secret, even though it's hard sometimes. I'm often tempted to censor myself when I want to make a comment about something I've gone through in a relevant conversation, but when I force myself not to censor things, I find that people are often willing to ask questions themselves, which makes it easier to talk about. If you're finding that people are having trouble understanding, I often direct my friends to the spoon theory, which while not specifically for Crohn's, is quite accurate (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/). 

Hope things look up soon! Let us know how things are going!


----------



## SunshineSam

So ive  been taken out for the count by Crohns for 6 full months now...the issues that are arising are difficult for my friends my age to understand, and even friends and family older as well. im off all meds but still experiencing fatigue and withdrawls. My issue is, how do i tell those who ask and care that i honestly wake up every day in huge amounts of pain? That my skin hurts all over from the withdrawls, that im mentally here but also not...this is getting old, though i know im on the home stretch of this first remission attempt.


----------



## duh panda

SunshineSam said:


> So ive  been taken out for the count by Crohns for 6 full months now...the issues that are arising are difficult for my friends my age to understand, and even friends and family older as well. im off all meds but still experiencing fatigue and withdrawls. My issue is, how do i tell those who ask and care that i honestly wake up every day in huge amounts of pain? That my skin hurts all over from the withdrawls, that im mentally here but also not...this is getting old, though i know im on the home stretch of this first remission attempt.


I stopped feel quiet so pressured to answer others in detail after coming to a realization that wanting or feeling a need for others to understand the situation is completely unnecessary for them to remain involved in my life. They do not need to share my pain to recognize my pain. They do not need to know the agony - mental or physical - to recognize that the struggle of this disease is downright horrific at times. 

When other's ask and I struggle with their response or lack of response after attempting to communicate what I feel; I find it's more about trying to find some validation for a life of pain and discomfort and unusual daily circumstances... if that makes sense? 

As humans, I think we ask questions to try to connect and feel involved, not always to understand. Friends and family may be trying to simply recognize what you are experiencing, not necessarily understand it with all its complexity. I've found that the best way to answer them is by continuing to share and remain open - and allowing them to share their life's successes and struggles in return because there's no real end to it. It's not like we can reach a cured endpoint - and even in remission there are still going to be shit days. Even healthy people still experience pain, still experience sickness at times, still experience miserable wretched disappointments throughout life that have to be dealt with. The chronic nature of trying to share and communicate about crohn's gets exhausting at times, I often try to compare it to other more normalized life events or struggles - but things like pain, discomfort, etc. are simply not communicated well. They are universal as an experience - much like love, joy or happiness - but how it is experienced as a verb or how it influences an individual cannot be compared. Experience is unique in that aspect and makes it downright impossible to convey in a manner that received completly undisputed understanding. 

 In the general scheme of things, other's most simply can't understand. Even within the IBD community, our experiences and the way in which we experience them are vastly different and highly dependent upon so many other factors. With that realization, for example, I stopped comparing myself to my 55 y.o. arthritic mother who can still out-exercise me, when she would ask how I am feeling. She knows pain itself is real - but she can not technically understand or know my pain despite experiencing her own level of daily pain and discomforts. And I can not know or understand her pain or what it is like to be 55 because I'm not there. Some days it's hard to admit that I'm not an 80 y.o. Because it's easier to think I could be 80 and there's and end to it or it's normal with how my joints feel, or the limitations I've experienced or worked through/ with up to this point. 

I'm 24 with Crohn's, and I feel like 24 with Crohn's. Someday I hope to be 80 and when that day come's i'll have earned the right to say I feel 80, whatever that entails or means. Empathy is not necessarily understanding, but validation of another's experiences good or bad, whatever they may be. When other's ask, they are probably seeking to empathize above all else. 

when others feel a need to ask and express curiosity or concern - I find it's most effective to be honest and just keep the conversation moving along by asking about their life or moving beyond my disease and its symptoms, because we are so much more then the pain, medications, and fight - even if that is the first thing we may think of waking up and the last thing we may think about going to sleep. They don't need a black and white road map to understanding/ knowing your pain when it just needs to be recognized or validated. That will make it as real for them as it is for you, and in my experience that alone is more then enough to feel a sense of unity and move beyond the isolation that can often set in on both sides.

I swear one of these days i'm going to find a way to communicate things without so many words or seeming to talk in circles. But it looks like that day is not today, and I happen to enjoy circles :dance:


----------



## alllison_x

Hi! My names Allison and I am 20 years old. I just got diagnosed with severe crohns disease in November of 2014. I really had no idea what the disease was up until that point. Nothing led up to me getting sick, it all hit me pretty fast. Unfortunately I had no idea what I had gotten into. 
Eventually I got so sick and ended up in the hospital because my heart rate was 175! Then they found out that my crohns had spread and it was drastically worse then when I first got diagnosed.  I have 2 inches towards the top of my stomach that isn't infected, the rest of my colan, small and large intestines is infected. TWO INCHES of normal, healthy intestine (what the heck)

Anyways, I'm here to talk if anyone ever needs it (even though I am fairly new to the disease I still want to be of support)
I also want to get to know other teens out there going through the same thing as me!


----------



## alllison_x

SunshineSam said:


> So back in Feb i was hospitalized for the first time for my crohns, and since then have been on predanazone and recently started my Humira injections....my question to the group is....as dumb as i know this will sound, im mega depressed because i have gained so much weight and look so different from my pre flare self =( im so used to being a care free spirit that didnt care about her looks and focused on other things much more worthy of her time...but now i just get a horrid pang everytime i look in the mirror, and i have to buy and sew all new clothing...im so happy im alive, but im so different, even my likes and dis likes in food.
> 
> how do you re adjust to you again guys? Once im strong again i plan to work out....but i have no idea when that will be, if ever


I just started on Humira and Azothiprine and it has helped me so much.  Just stay strong, once your body gets used to it all you'll be back to your normal self (at least thats what Ive been told) I think its better than feeling awful and sick all the time


----------



## SunshineSam

whats the expected time it takes to get back to normal? Or is that mindset wrong, do you think. Im getting off all meds but still really weak and bloated and nasty. Hows its going for you ladies? i would love to add you guys on fb, so i can really have some real friends going through what i am and at the same age as well. Same pic, lastname is French. hope you look me up Duh_panda and allison_x


----------



## duh panda

Sent You a FB friend request  Might be kinda confusing since nothing on here really connects to any other online presence other then the blog link in my signature >.< But there ya have it. If anyone else wants to add me name is Kyra Gee, same location info as listed here.

I don't think it's wrong to have the mindset to get back to feeling normal, but I've found since I've never been in remission and it's been so long that there's less disappointment if I don't set a time frame on when my normal is finally going to come about.

Prednisone withdrawals are a total slap in the face... really any med. adjustment is. But pred. is especially rough. Rough getting onto it, rough while on it, rough while getting off and for an undetermined amount of time after - it lingers. 

Have you been pursuing exercise? What kinds? I was a bit nervous about starting to push my body with some circuit and strength training instead of just my usual walks or yoga but have noticed while I'm wiped out a bit earlier in my evenings; energy, while low, is more consistent throughout the late morning/ afternoons which helps me better manage my days. Also, seems to help with bloating/ abdominal discomfort a bit better then the days when I don't push it a bit with physical activity. I hadn't realized before but prednisone doesn't just tax the body's absorption and use of calcium for its own devices - it also takes a tole of muscles/ ligaments requiring protein too. Once I start feeling well enough and like the disease is managed enough always seems like instigating exercise and fitness goals brings back the normal feel to life even if I'm far from the idea of a normal, healthy body.


----------



## Hattie95

Thanks duh panda, that was exactly the message I needed to read tonight. I'm far from remission but starting to feel like this crappyness is maybe my new normal and I've been wanting to get back in the gym. I used to work out 5-6 times a week before I got ill and I miss it so much! So reading how it makes you feel better really boosted my spirits. I think I'm going to try a light workout tomorrow, maybe it might even help my arthritis! So thank you again, I really needed that boost [emoji5]️


----------



## alllison_x

SunshineSam said:


> whats the expected time it takes to get back to normal? Or is that mindset wrong, do you think. Im getting off all meds but still really weak and bloated and nasty. Hows its going for you ladies? i would love to add you guys on fb, so i can really have some real friends going through what i am and at the same age as well. Same pic, lastname is French. hope you look me up Duh_panda and allison_x


I added you!


----------



## Caitlin84

I can't wait to get back to yoga and dance. Right now going to a Dr. appointment leaves me so exhausted I'm sick. I used to think sleeping all the time would be great--now I know its just super boring!


----------



## AnnieYa

Just an update. The Dutch healthcare system didn't go great. I got worse to the point of the most extreme nausea I've ever had, couldn't stand the smell or sight of anything which was potentially food/drink related. An urgent appointment wouldn't be possible till the end of October. I ended up flying back to the UK last minute to get an emergency appointment there. The weight loss wasn't as bad as I was expecting since I was weighed about two weeks ago - I seem to drop rapidly then hit a point where my body struggles to get below about 8 stone (~54 kg). 

Back on the steroids and this time round I don't seem to be having the adjustment period where they make me feel sick, but I guess it's a lower dose than the last time round. I got anti-nausea and a low dose of Azathioprine. Need to try and persuade my GP to prescribe the taper for the steroids, continue the azathioprine here and transfer the blood test requests over. I'll be flying back to the UK again in a couple of weeks for a colonoscopy and gastroscopy (although the gastroscopy has me in tears, I had a really bad experience with one in March, don't know if anyone else is the same?).

How is everyone feeling? 

Oh, and Caitlin, I heard that yoga is good for Crohn's? All that stretching looks kind of painful.


----------



## duh panda

AnnieYa said:


> Just an update. The Dutch healthcare system didn't go great. I got worse to the point of the most extreme nausea I've ever had, couldn't stand the smell or sight of anything which was potentially food/drink related. An urgent appointment wouldn't be possible till the end of October. I ended up flying back to the UK last minute to get an emergency appointment there. The weight loss wasn't as bad as I was expecting since I was weighed about two weeks ago - I seem to drop rapidly then hit a point where my body struggles to get below about 8 stone (~54 kg).
> 
> Back on the steroids and this time round I don't seem to be having the adjustment period where they make me feel sick, but I guess it's a lower dose than the last time round. I got anti-nausea and a low dose of Azathioprine. Need to try and persuade my GP to prescribe the taper for the steroids, continue the azathioprine here and transfer the blood test requests over. I'll be flying back to the UK again in a couple of weeks for a colonoscopy and gastroscopy (although the gastroscopy has me in tears, I had a really bad experience with one in March, don't know if anyone else is the same?).
> 
> How is everyone feeling?
> 
> Oh, and Caitlin, I heard that yoga is good for Crohn's? All that stretching looks kind of painful.


Glad to hear that while things didn't go as smoothly as planned you're doing what's needed to take care of your health and the steps to get everything lined up in a new system.

I've always loved yoga, it's one of the few things I can still incorporate besides walks when flaring really bad. Plus, it keeps me close to restrooms  if you consider there are aspects to yoga that isn't just crazy intense postures but can focus on breathing it's less intimidating. For me, it's helped tremendously with learning pain management and coping. There are some great YouTube videos of yoga demonstrated by ppl with crohns and gives a really positive, gentle introduction to it if your curious.


----------



## SunshineSam

been awhile since ive visited the page? Welcome all new peeps!!

here is my bit of wisdom from Fl USA!

Rompers, Rompers ROMPERS!!! So cute so good for your gut and no one can see your prednisone gut ^_^


----------



## LCATC945

SunshineSam said:


> been awhile since ive visited the page? Welcome all new peeps!!
> 
> 
> 
> here is my bit of wisdom from Fl USA!
> 
> 
> 
> Rompers, Rompers ROMPERS!!! So cute so good for your gut and no one can see your prednisone gut ^_^



What are rompers. This time last year I was 5'11 and 100lbs. Now I'm 178. This weight difference is big and makes me feel fat. On pentasa and Humira and now out in the adult world but seem to be symptom free


----------



## LCATC945

...I have a problem. I've been asked for two weddings same day to be groomsmen.


----------



## AnnieYa

Have you seen 27 dresses? It's doable.


----------



## duh panda

AnnieYa said:


> Have you seen 27 dresses? It's doable.


Lol, that is a perfect parallel. 

What exactly are groomsmen supposed to do? I've always thought they're a bit more of a wedding accessory that helps break stuff down at the end. At least, the weddings I've been in and to that's about all the groomsmen seemed to do and the best man's job was just to make sure the groom was waiting for the bride before she hit the aisle. So, you should be good... unless ceremony's are at the same time and in different states or there is a similar such complexity to the situation. In that case... I'd go to whichever wedding is sure to have the best food and/ or entertainment because we all know the cake is never as good as it's hyped up to be ;-)


----------



## SunshineSam

LCATC945 said:


> What are rompers. This time last year I was 5'11 and 100lbs. Now I'm 178. This weight difference is big and makes me feel fat. On pentasa and Humira and now out in the adult world but seem to be symptom free


a romper is a dress with pant legs lol shorts. its a one piece so no waist line, and you can get some to cinch right at the small of your waist or just lay on you and have no definition which works with a cute pattern so you dont look big or small you just look like a bod lol


----------



## ZombiePenguin

Hopping in here >.> <.< just past 18 recently but I still feel like I'm ending up with a huge disconnect from everyone I know <.> ah well, I try. I'm on such a reverse schedule right now, sunrises are becoming the new sunsets for me xD


----------



## Quazaka

Heeey so I'm new to the forum but not so new to Crohn's, I was diagnosed at 14 and now I'm 20! Anyway I just recently stumbled across this site and here I am! My name is Andra btw and it's nice to meet you all


----------



## esther_m

G'day, I'm 29, was diagnosed with Crohn's this year... well, it was about 6 months ago now, so I'm really over telling my friends and flatmates that I'm sick, I just say other things like 'I already ate' or 'I'm just feeling tired'. 

I really wish there was some alternative to strong drugs, but after reading comments on the forum for a couple of hours, seems that everyone is taking drugs. Can anyone give me advice about long term side effects? A bit of nausea is alright but I don't want to treat my CD with something that causes something worse. I can't take Imuran because my white blood cells bombed, but my dr seems to think I could try it again because he's not sure it was the Imuran causing the blood problem >.<

I'm on Humira at the moment (2.5 months), it seemed like it was working but the last month my symptoms seem to have been coming back (is that normal?). They want to put me on Mtx (can't spell it) as well as Humira. I'm a bit scared of the drugs because I have no idea what they're doing to me and my doctors just keep saying they're really safe.

Last question, does anyone know of any support forums in Melbourne near the CBD?


----------



## duh panda

esther_m said:


> G'day, I'm 29, was diagnosed with Crohn's this year... well, it was about 6 months ago now, so I'm really over telling my friends and flatmates that I'm sick, I just say other things like 'I already ate' or 'I'm just feeling tired'.
> 
> I really wish there was some alternative to strong drugs, but after reading comments on the forum for a couple of hours, seems that everyone is taking drugs. Can anyone give me advice about long term side effects? A bit of nausea is alright but I don't want to treat my CD with something that causes something worse. I can't take Imuran because my white blood cells bombed, but my dr seems to think I could try it again because he's not sure it was the Imuran causing the blood problem >.<
> 
> I'm on Humira at the moment (2.5 months), it seemed like it was working but the last month my symptoms seem to have been coming back (is that normal?). They want to put me on Mtx (can't spell it) as well as Humira. I'm a bit scared of the drugs because I have no idea what they're doing to me and my doctors just keep saying they're really safe.
> 
> Last question, does anyone know of any support forums in Melbourne near the CBD?



Hey esther,  welcome to the forum. 

In the most condensed of explanations, the reason for long term use of medications in treating crohn's disease is for maintenance of disease. Medications such as biologics like Humira are to reduce inflammation throughout the digestive tract. Management/ treatment of inflammation is important as it seems to be the base cause to crohn's complications including fissures, fistulas, stricturing, and bowel obstructions. These complications are the primary cause that leads to surgery in crohn's patients. Therefore, preventing and minimizing their manifestation is key in maintaining a patient's well-being and reducing the likelihood of needing surgery.

Unfortunately, side effects of crohn's medications can be serious; however, crohn's can also be very serious ranging from mild to acute cases in presentation of symptoms both short and long-term. It is your medical team's job and responsibility to inform you of both how the medications work, why they suggest combining certain medications, the potential side effects - over short and long term use, the serious side effects to be aware of, and whether or not it is a viable option for how you wish to live your life. You can always check out the forum threads for Humira, Imuran, and Methotrexate (MTX) to see how others are doing with those treatments, a lot discuss side effects, basically their experience with it.

If you don't feel comfortable with your treatment plan, or have questions, do call and talk to your doctor. Keep calling and keep pushing if they seem slow or hesitant to follow up. A week is too long to not hear from a medical office - either the doctor directly or one of their nurses.


----------



## esther_m

Hi panda, thanks, you sound like a really reasonable and logical person. I'm usually the logical type but I think the emotional factor was getting to me a bit yesterday! Anyways, it's hard to make these decisions -- how can you decide between two unknown outcomes? -- and I've not yet decided to surrender all control to doctors, so for me I guess I'll just try to be well informed and pray about it and decide that way.


----------



## ronroush7

Quazaka said:


> Heeey so I'm new to the forum but not so new to Crohn's, I was diagnosed at 14 and now I'm 20! Anyway I just recently stumbled across this site and here I am! My name is Andra btw and it's nice to meet you all


Nice to meet you.

 2


----------



## duh panda

esther_m said:


> Hi panda, thanks, you sound like a really reasonable and logical person. I'm usually the logical type but I think the emotional factor was getting to me a bit yesterday! Anyways, it's hard to make these decisions -- how can you decide between two unknown outcomes? -- and I've not yet decided to surrender all control to doctors, so for me I guess I'll just try to be well informed and pray about it and decide that way.


For me I think it was a little easier - I was diagnosed as a teen so while I was involved in the decision making I relied heavily on doctors and family for guidance early on - there also weren't as many options for medications so I've worked my way through medications as I've failed one and making the switch as a new one becomes available using prednisone as a bridge. As an adult I've considered what I'd like to do (for example, have children or not - some medications such as MTX are known to have potentially negative impacts on a fetus) because a treatment plan I can follow through on is important to me. I switched from Remicade to Humira when it was approved because it was more convenient while attending university. Those are some reasons that have lead me to pursue one medication or combo of medications over another and help choose a course of action.


----------



## esther_m

duh panda said:


> For me I think it was a little easier - I was diagnosed as a teen ...


It's strange, there are many things outside our control in life, but when the loss of control is unexpected, it's still so frustrating. I never expected to end up on long terms drugs (lol!). Was it easier to accept as a teen, or does it get easier the longer it's part of your life?


----------



## duh panda

esther_m said:


> does it get easier the longer it's part of your life?


Some moments and periods of time are easier then others, but I think having a bit of history can be a useful perspective.


----------



## Quazaka

Hey! I'm sorry you have to deal with all of this, I know for me personally it's gotten easier to accept as I go through life. I was diagnosed as a teen, and I know it was difficult because it felt unfair that I had to worry about medication and what I was eating and what my stool looked like while all my friends were worrying about who liked who and clothes and makeup (honestly looking back I realize I was spared a lot of drama cause I didn't waste time worrying about those things haha) but at the same time I can imagine that it would be difficult to get this diagnosis after you've got your life figured out. It's not easy to accept at first but it does get easier. Sometimes there's a lot of frustration and tears but it's a lot easier when you can find a good doctor that you can trust and feel comfortable with and a good support group of friends and family that will support you. As far as the medications, I would encourage you to do as much research as you can and definitely ask your doctor if you have questions, I know the reason for having the MTX with the Humira is cause it keeps you from building up those antibodies to the Humira. They've done studies of the long term effectiveness of Humira or Remicade by itself verses the effectiveness with MTX or Azithoprane and its siginificantly more effective to manage symptoms with the two together.

I hope this helps some and best of luck!


----------



## Caitlin84

I totally agree that while it doesn't necessarily make it easier, time gives perspective.

As for meds, I can honestly say my problems have always stemmed from not taking them, rather than taking them. One surgery later and a foot of intestines later, I will never try to manage my Crohn's on my own again.


----------



## esther_m

Thanks Andra, yeah my doctor said that pairing the meds was to stop antibodies, but somehow it feels better to hear it from an independent source. I know we're all not doctors and to some extent we have to trust what they tell us, but it's nice to hear feedback from others who have been through this before me.

I'll definitely take your advice to research more. But there are some things it's hard to find out through research. At the start I read in so many places that stress doesn't cause CD so I believed that, but then when I heard somewhere that it did, I started finding all these contrary opinions. The official information about the drugs is a bit hard to contextualise, for example, if there's a one in blah-blah chance of serious infection, what does that really mean? So yeah... it's helpful to hear from people who have taken them too.



Caitlin84 said:


> I totally agree that while it doesn't necessarily make it easier, time gives perspective.
> 
> As for meds, I can honestly say my problems have always stemmed from not taking them, rather than taking them. One surgery later and a foot of intestines later, I will never try to manage my Crohn's on my own again.


Lol, I always think alternative therapies will work (because the people who talk about them are SO convinced, right?) but then they never do. You'd think I would have learned by now!^^


----------



## Caitlin84

Lol, I always think alternative therapies will work (because the people who talk about them are SO convinced, right?) but then they never do. You'd think I would have learned by now!^^[/QUOTE]

The double edged sword of hope, right?


----------



## happy life

Hi,I am new on this forum,I am 21 yrs old and suffering from crohns at the age of 14


----------



## ronroush7

Welcome, happy life.


----------



## happy life

Thax ronroush u r from


----------



## ronroush7

Vienna Virginia within the USA.


----------



## happy life

I am from india


----------



## ronroush7

Do you have Crohn's or Colitis?


----------



## happy life

Crohns,i am 21 yrs old and suffering crohns  when i am 14 yrs old


----------



## ronroush7

I am sorry.  I am 59 and I was diagnosed at 34.


----------



## happy life

Ok why r u telling sry nice to meet u


----------



## ronroush7

Sorry.  Too much information?


----------



## happy life

No problem


----------



## esther_m

Oh, I really wanted to go to the young adults support group in Collingwood, Melbourne (Australia) and no one replied to my email so I just rocked up... but the meeting place is closed for refurbishment. (((((((

I don't even know if this support group really exists, or if it's just a hang-over internet notice that no-one ever took down. 

Really depressed right now... I was so looking forward to spending some time with people who might understand...


----------



## athena

Hello everyone! My name is Athena, and I am 24! I am from western N.Y!  I am very new to having Crohn's (my first Crohnsiversary is 12/31).  I am currently on Remicade, but found out today that it is not working for me .  I have no idea what will be next for me, but I do know that my next treatment calls for "a change to another type of therapy (not targeting TNF-alpha) may be appropriate."  

Anyone else wish their Crohn's would just disappear? Haha.

Athena!


----------



## ronroush7

athena said:


> Hello everyone! My name is Athena, and I am 24! I am from western N.Y!  I am very new to having Crohn's (my first Crohnsiversary is 12/31).  I am currently on Remicade, but found out today that it is not working for me .  I have no idea what will be next for me, but I do know that my next treatment calls for "a change to another type of therapy (not targeting TNF-alpha) may be appropriate."
> 
> Anyone else wish their Crohn's would just disappear? Haha.
> 
> Athena!


Welcome to this forum.  Yes, I definitely wish it would disappear.  Best to you.  I was on Remicade but I had a rare side effect with it and had to stop.


----------



## stickman7755

Im 28, do I make the cut?


----------



## Liam-Sman

Organizing a more informal pub trip for crohns and colitis in London very soon! Join the group if you're interested in meeting up with other people with IBD. https://www.facebook.com/groups/1153745571382044/


----------



## MizzSarah

can relate to so many of you who are struggling with work. Was diagnosed with Crohn's 2 years ago (now 23) and I purposely jumped into my education right after highschool as I was very sick then and knew I had to find stability quick. Wasn't diagnosed with Crohn's till 7 years after a long battle of misdiagnosis. All my highschool years spent sick. Now as a working professional in the schools my anxiety is on high alert as I'm having to take sporadic days off. I'm constantly in fear of getting a call saying I've been let go. I have nightmares about it all the time.  I had to put a medical accommodation this year already which is tragic. I wasn't expecting my life to be like this at such a young age. I look at my friends and they are still in UNI having a good time and I'm here having to plead with my body to just get thru one more day.


----------



## chronicallypositive

Liam-Sman said:


> Organizing a more informal pub trip for crohns and colitis in London very soon! Join the group if you're interested in meeting up with other people with IBD. https://www.facebook.com/groups/1153745571382044/


There needs to be something like this in Ottawa.


----------



## LilMissCrohnie

MizzSarah said:


> can relate to so many of you who are struggling with work. Was diagnosed with Crohn's 2 years ago (now 23) and I purposely jumped into my education right after highschool as I was very sick then and knew I had to find stability quick. Wasn't diagnosed with Crohn's till 7 years after a long battle of misdiagnosis. All my highschool years spent sick. Now as a working professional in the schools my anxiety is on high alert as I'm having to take sporadic days off. I'm constantly in fear of getting a call saying I've been let go. I have nightmares about it all the time.  I had to put a medical accommodation this year already which is tragic. I wasn't expecting my life to be like this at such a young age. I look at my friends and they are still in UNI having a good time and I'm here having to plead with my body to just get thru one more day.


I feel you Sarah. I'm 19 and currently in my second year of uni , I've had to defer for 6 months already and have been in and out of hospital for a year. I'm back this trimester and have already missed a class and have had surgery and been into emergency. I've gone back to work after 5 months and have done 3 shifts, as their watching me closely. I went into emergency last Friday and told my boss that I'd keep her updated (never said I couldn't make it) and then the next day said I was fine to work and she pulled the "it's getting really hard because you're always sick"... I cry almost every day because I watch all my peers and family travel and work and go to uni so easily. But I struggle to get out of bed, or even eat for days or leave the bathroom. I feel so alone in the world...


----------



## chronicallypositive

LilMissCrohnie said:


> I feel you Sarah. I'm 19 and currently in my second year of uni , I've had to defer for 6 months already and have been in and out of hospital for a year. I'm back this trimester and have already missed a class and have had surgery and been into emergency. I've gone back to work after 5 months and have done 3 shifts, as their watching me closely. I went into emergency last Friday and told my boss that I'd keep her updated (never said I couldn't make it) and then the next day said I was fine to work and she pulled the "it's getting really hard because you're always sick"... I cry almost every day because I watch all my peers and family travel and work and go to uni so easily. But I struggle to get out of bed, or even eat for days or leave the bathroom. I feel so alone in the world...


20 here.

hey you. You're amazing. Most people would give up. Keep fighting. :C


----------



## LilMissCrohnie

chronicallypositive said:


> 20 here.
> 
> hey you. You're amazing. Most people would give up. Keep fighting. :C


Thanks chronicallypositive. 

I'm trying so hard to not give up


----------



## chronicallypositive

LilMissCrohnie said:


> Thanks chronicallypositive.
> 
> I'm trying so hard to not give up


Add me on facebook or hell send me a message here anytime.  

I'm here for you. If you want!


----------



## LilMissCrohnie

chronicallypositive said:


> Add me on facebook or hell send me a message here anytime.
> 
> I'm here for you. If you want!


I'd love too! Send me your details and I'll add you


----------



## MizzSarah

It's a tough battle trying to find balance between personal identity vs the identity with a sickness. There's often times I wish for that 'typical' life without barriers but I try to believe there is a purpose beyond all of this mayhem. Still trying to find mine.  

Be strong. Be kind to yourself. I'm here if you ever need someone to talk to. 





LilMissCrohnie said:


> I feel you Sarah. I'm 19 and currently in my second year of uni , I've had to defer for 6 months already and have been in and out of hospital for a year. I'm back this trimester and have already missed a class and have had surgery and been into emergency. I've gone back to work after 5 months and have done 3 shifts, as their watching me closely. I went into emergency last Friday and told my boss that I'd keep her updated (never said I couldn't make it) and then the next day said I was fine to work and she pulled the "it's getting really hard because you're always sick"... I cry almost every day because I watch all my peers and family travel and work and go to uni so easily. But I struggle to get out of bed, or even eat for days or leave the bathroom. I feel so alone in the world...


----------



## mitchiedoo42

Im 22 and joining in  :rosette2:


----------



## RomGrl

I was just diagnosed. It's been the scariest week of my life and it's only the beginning. I turn 27 this year in October...


----------



## LilMissCrohnie

RomGrl said:


> I was just diagnosed. It's been the scariest week of my life and it's only the beginning. I turn 27 this year in October...


We are all here for you <3


----------



## MizzSarah

Newly 24 and I was diagnosed in my early twenties. Pretty difficult trying to adjust to adulthood dealing with all the feelings of unwellness. Beginning highschool I was sick---doctors couldn't figure out anything yet now that I look back the Crohn's made perfect sense. Quickly got an education---sort of settled for something I could start paying my dues too so I'd have some support if I need to go on LTD. Lots of pressure to do everything quick...


Now I'm 3 years in working at schools and I'm at a loss really. I love my job. It was a great choice for me then but I wish I had a chance to enjoy university... instead I felt in a time crunch to get everything done if my conditioned worsened.

Moral of the story is---take your time.. even if it takes longer you'll appreciate your education far more


----------



## RomGrl

LilMissCrohnie, thank you.. 

MizzSarah, that's quite the story. It all makes sense to me as well. I started college, starting getting a little worse and it ended up ruining the community college for me. Then I got better and was on top of the world (aside from anxiety) got married and moved into our first house. But over the last year 2016 mostly, nobody could figure out what was wrong I had clean colonoscopies, endoscopies, blood results. Then I got c.diff from the guessing of what's wrong with me and that was one hell of a time to fight. Soon after c.diff after 4 relapses, they found the Crohn's disease. It's absolutely insane... I was just getting ready to have a family and now I am not even sure how to go about that, it's absolutely just mentally wrecking. 

I run a positive news website that I have been having trouble managing as well. I'm sorry for rambling... I just feel so 'cheated.' I have always been the person bringing people up and here I am at the lowest I've ever felt in my life. 

Literally, the lowest... Growing up with an abusive father doesn't seem as painful as learning you have Crohn's... sigh. 

Thank you for the love.


----------



## MizzSarah

if your hoping to start having children soon there is a forum somewhere on here where you can communicate with women trying to conceive etc. Definitely mention to your Gastrointestinal that your hoping to start trying for a family. There might be some changes to your Meds etc. 


I hope to be in a place soon where I want to get married and have kids. I'm still in the yuck feeling where I don't feel the greatest and why would anyone want me. 

Don't want this disease to sabotage my life but it's already happening. 


Keep fighting for something that works for you. There might be that one thing that you stumble across and you'll be like where we you all this time?




RomGrl said:


> LilMissCrohnie, thank you..
> 
> MizzSarah, that's quite the story. It all makes sense to me as well. I started college, starting getting a little worse and it ended up ruining the community college for me. Then I got better and was on top of the world (aside from anxiety) got married and moved into our first house. But over the last year 2016 mostly, nobody could figure out what was wrong I had clean colonoscopies, endoscopies, blood results. Then I got c.diff from the guessing of what's wrong with me and that was one hell of a time to fight. Soon after c.diff after 4 relapses, they found the Crohn's disease. It's absolutely insane... I was just getting ready to have a family and now I am not even sure how to go about that, it's absolutely just mentally wrecking.
> 
> I run a positive news website that I have been having trouble managing as well. I'm sorry for rambling... I just feel so 'cheated.' I have always been the person bringing people up and here I am at the lowest I've ever felt in my life.
> 
> Literally, the lowest... Growing up with an abusive father doesn't seem as painful as learning you have Crohn's... sigh.
> 
> Thank you for the love.


----------



## jahlstrand

SarahBear said:


> Just to get some conversation started…  Answer any (or all) of the following, or just use them for ideas.
> 
> *- What "young adult" type situations has IBD affected for you?*
> 
> *- Has IBD affected your educational opportunities and choices?*
> 
> *- Has IBD affected your independence from your family?*
> 
> *- Has IBD affected your social relationships, dating, or your body image?*
> 
> *- Do you feel as if IBD has matured you beyond your age or for kept you from maturing in any way?*
> 
> *- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?*


Hi ya'll! I'm 25 and quite often get the "you're too young to have all of these problems!" or "just wait till you're _my_ age; then you'll know what _true_ pain/ illness feels like!" :angry-banghead: I really struggled with being around friends/ away from home because you never know when you'll need to find a bathroom, and that can be really embarrassing, especially in dating situations. Both of my parents are deceased, but I have to live with my stepdad and sister because I can't afford to live on my own while simultaneously drowning in medical debt. Thankfully, my educational and work choices haven't been affected much yet. I want to get my masters and be a physician's assistant, but I worry that being in medicine (which really is my forte) could pose a significant risk to my health, especially if I'm put on Remicade or another biologic. IBD has made me hyperconscious of my body and my imperfections, including abdominal scarring from surgery. I honestly shouldn't complain; I only have four laparoscopic scars from a cholecystectomy. I don't know if anyone else feels this way, but I feel like having IBD as a young adult makes things incredibly complicated. If you're a child, you're likely not dating, and social situations are much more fluid for children in general. Also, you don't have to worry about the financial aspects of your illness much, and someone calls the shots for you. You don't have to work, or worry about not being able to work. For a lot of adults, you're in a more concrete place in life; you may have a romantic partner and friends that have been around for a while, and adults in general tend to be more open minded about life's curveballs. Adults typically also have a more stable work environment, and that tends to give them a little more wiggle room on the employment end. Also, bathroom humor (or talk in general) tends to make young adults without IBD squeamish. All in all, I think IBD has its own difficulties for each person regardless of age, and I don't think its "easy" for any of us. I feel that IBD, alongside my other life experiences, has matured me far beyond my years. Thanks for listening to me ramble!


----------



## donovan.smith

Hello all, my name is Donovan Smith and I am currently a 20 year old college Junior at Mississippi State University working towards a degree in Aerospace Engineering, and I am a member of the professional engineering fraternity known as Theta Tau. I have been diagnosed on the 16th this month with  Crohn's Disease and Ulcerative Colitis. I'm currently on my third week of prednisone with tapering doses for another month and am supposed to start treatment asap next month. It's been hard transitioning and figuring out my lifestyle again especially with diet and sleep changes. Any advice will be greatly appreciated, especially if anyone can help me figure out how to sleep longer at night without having to wake up multiple times to bowel movements, if that's possible...I need advice with diet too.


----------



## Tony_G

@ donovan.smith: College was a lot easier for me once I identified my triggers. Is stress a trigger for you? I recognized stress was a trigger for me as a teenager and I worked hard to eliminate it. I practiced lots of Buddhist techniques, perhaps too much. I now have an unemotional "nothing really matters attitude" that depresses some people when I talk to them. 

Probably even more effective would be to identify any food triggers. The sooner you identify these, the better off you will be. 

I haven't had the excessive bowel movement issue since high school after making drastic diet changes (talk it over with your Dr. of course). 

At one point I tried to fight the urge to go and I was able to eventually go longer without using the restroom but it probably did more harm than good to my digestive tract. I wouldn't recommend this.


----------



## chronicallypositive

I wish this forum was more active. :/ I need to make some friends.


----------



## emmaaaargh

Oh hey I guess I count as one of these now! I turned 20 in August and completely forgot about this support group since nobody had posted here in so long. So there's someone else in this category still on the forum, at least


----------



## chronicallypositive

Would anyone be interested, whatever age btw- in making a discord group to talk to eachother on? 

Or does anyone know of a server I can join that is for the IBD community? I think it would be a good idea, to help others connect.


----------



## chronicallypositive

donovan.smith said:


> Hello all, my name is Donovan Smith and I am currently a 20 year old college Junior at Mississippi State University working towards a degree in Aerospace Engineering, and I am a member of the professional engineering fraternity known as Theta Tau. I have been diagnosed on the 16th this month with  Crohn's Disease and Ulcerative Colitis. I'm currently on my third week of prednisone with tapering doses for another month and am supposed to start treatment asap next month. It's been hard transitioning and figuring out my lifestyle again especially with diet and sleep changes. Any advice will be greatly appreciated, especially if anyone can help me figure out how to sleep longer at night without having to wake up multiple times to bowel movements, if that's possible...I need advice with diet too.


Hey dude been dealing with this stuff for years. Message me with any questions you may have!


----------



## flashspark036

hi
this is frank smith of 30 years old.
i am good looking and handsome.


----------



## DHabes

chronicallypositive said:


> Would anyone be interested, whatever age btw- in making a discord group to talk to eachother on?
> 
> 
> 
> Or does anyone know of a server I can join that is for the IBD community? I think it would be a good idea, to help others connect.




This is a great idea! I’d be interested


----------

