Young Adult Support Group

[rygon]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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--]

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--]

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]

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]

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--]

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]

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??