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Young Adult Support Group

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

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

Moderator
Staff member
Location
Vancouver,
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! :)
 
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

Moderator
Location
Charleston,
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. :p Maybe because I didn't deal with this when I first was diagnosed, it doesn't really bother me?
 
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

Moderator
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 :p
 

SarahBear

Moderator
Location
Charleston,
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?
 
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afidz

Super Moderator
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

Moderator
Staff member
Location
Vancouver,
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.
 
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?
 

rygon

Moderator
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.
 
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 :eek:) - 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
 
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.
 
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

Moderator
Location
Charleston,
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. :p
 
- 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
 
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)
 
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.
 
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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.
 
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.
 
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.
 
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.
 
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
 
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.
 
- 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.
 
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

Moderator
- 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 :p

- 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

Moderator
Staff member
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 .
 
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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

Moderator
Staff member
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.
 
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

Moderator
Location
Charleston,
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?
 
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!
 
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

Moderator
Location
Charleston,
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. :p

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

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
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.
 
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

Moderator
Staff member
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.
 
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.

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

Moderator
Staff member
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 :p 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 .
 
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.
 
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

Moderator
Staff member
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

Moderator
Staff member
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.
 
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

Moderator
Staff member
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 :) .
 

valleysangel92

Moderator
Staff member
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

Moderator
Staff member
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
 
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.
 
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. :/
 
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

Moderator
Staff member
Location
Vancouver,
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.
 
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

Moderator
Staff member
Location
Vancouver,
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...
 
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

Moderator
Staff member
Location
Vancouver,
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...
 
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

Moderator
Location
Charleston,
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:
 
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.
 
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

Moderator
Staff member
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.
 
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 :)
 
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.
 
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

Moderator
Location
Charleston,
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?
 
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

Moderator
Location
Charleston,
: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.
 
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!
 
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

Moderator
Staff member
Location
Vancouver,
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
 
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.
 
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.
 
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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
 
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.
 
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.
 
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)
 
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. :(
 
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?
 
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