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Young Adult Support Group

theOcean

Moderator
I am, yes! Have been since last October and hope to stay there as long as possible. :)
 
I'm back to my old weight. Finally. Start humira wed. Have it in my fridge. Im in medicinal remission. Which is good.
 
Hey young adults, I've been around the forum for awhile, bummed I didn't see this earlier! I love knowing other young people with IBD, makes me feel like I belong. I'm a graduate student so I'm living the life I want, but socially IBD makes it hard, always being tired, I really don't drink and most 20-somethings don't understand the concept of not feeling well all the time.

Anyways this forum has helped me quite a bit- thanks :)
 

Orchid

Banned
Most people are still riding that "I'M INVINCIBLE" high of youth. It's pretty annoying and I'm so glad I have friends and a fiancee who know what it's like to have a chronic illness.
 
Welcome Cosmojo. It always makes me feel good to hear from grad students making it work. I'm starting an MFA program this Fall... I'm nervous, but at the same time having to fight a little harder made my goals and priorities that much clearer through the application process, so I also feel good about the path my life is taking.
 
Taking it out of the fridge about 20 minutes before helps with the injection pain. Good luck :) I'm glad to hear you are in remission. That's great!
 
I'm back to my old weight. Finally. Start humira wed. Have it in my fridge. Im in medicinal remission. Which is good.
Taking it out of the fridge about 20 minutes before helps with the injection pain. Good luck :) I'm glad to hear you are in remission. That's great!
I just replied twice. Oh well
 
Hey young adults, I've been around the forum for awhile, bummed I didn't see this earlier! I love knowing other young people with IBD, makes me feel like I belong. I'm a graduate student so I'm living the life I want, but socially IBD makes it hard, always being tired, I really don't drink and most 20-somethings don't understand the concept of not feeling well all the time.

Anyways this forum has helped me quite a bit- thanks :)
I'm in grad school too! Stress is awful but we can make it :)
 
I'm 18, and I've just been diagnosed a couple of weeks ago, and I'm due to start University in two weeks! So unbelievably frightened because I'm going through such a bad flare up at the moment, don't know how I'm going to be able to be so sociable!
 
Hi, I'm 17 and got diagnosed last year with crohns. Although my condition isn't severe, it has affected my life in a huge way, so hoping this forum can help :)
 
24. diagnosed with Crohns Nov 2013. still awaiting some relief. The hardest part of this whole thing has been image overall. of course my body image has gone down. I've gained over 20lbs from prednisone :( but also my self image has been affected a lot. I always prided myself in being the "person you could always count on" I was always reliable at work and worked hard. I was still working VERY hard while i was undiagnosed but just kept pushing. Now i have a hard time letting me down when I'm sick. luckily now, i am a nanny and my job is a little more lenient now, but i still feel guilty and horrible when i have to take time off for my health. My boss literally yelled at me for coming back to work too soon after my last hospital stay, but i just can't handle the fact that people rely on me and my illness prevents me from being dependable. Not just in the work environment either. I feel like i constantly let down my fiancé. He'll want to do things together or stay up and watch a movie and i just end up not feeling well and falling asleep on him. :/ It definitely affects my social life, and being only 24 i feel like an 80 yr old woman
 
Hi, I was diagnosed with crohn's about 3.5 months ago and I'm 21 years old. I just FINALLY got the green light to stop the prednisone but am still on Entocort for a little while longer. How long did it take you for the symptoms to go away? I absolutely hate the moon face. As much as I try and tell myself it's temporary and to not think about it, it's hard as a young woman in college to stay positive. Any advice? I've been feeling really down for a while and am ready to feel like myself again.

Also any advice for taking humira? I'm about to start the injections sometime next week and am a bit nervous.
 
^ I just started Humira a week ago. The injections weren't all that terrible, like you I just came off prednisone. I put on close to 20 lbs from it :( but the extra weight and tummy I got from it made the Humira injections go a lot smoother than my normal body weight. I was terrified because everyone said that the pen injections hurts more than the syringe but they actually weren't bad at all and they were super easy. Next week is my second injection and I'm really excited for it to kick in and start working :) if you have tattoos or piercings the injections will be a breeze. As for the moon face I promise you it does go away good luck!
 
I gained almost 40 pounds on prednisone! Now some of it was needed, but a lot wasn't.

The best thing for Humira injections is to take them out of the fridge a while before injecting! That helped me a lot.
 
It's so great to have found this thread. While I wish that none of you had IBD, it's really nice to know that I'm not alone in all of this.

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

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

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

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

Did you all feel that surgery was worth it?

Also sorry for the personal question but for a 20 year old, I'm not feeling very uhmm.. How do you put it nicely.. In the mood? Does anyone else feel the same? I feel so bad for my poor bf! Haha!
 
im 24 i was diagnosed in june, i live alone, no family nearby. its been incredibly tough. i lost 50 lbs from the initial flare and it is still lingering. ive only gained 10 back from the prednisone and my doc has me weaning off it starting this week. i want to go back on the entocort, it healed my fissure the first time. i am also very anemic, been hospitalized twice because of it. and i decided to take this semester off of school - my third break...
I still get very bloated and have trouble eating enough to gain wait. I am waiting to get the food sensitivity blood test i hope it helps.
 
I'm a creative one, 24 years old living in the north west.
I'm trying to be on the forum on a regular basis because I'm alone and in my head alot. At the moment, I'm scheduled to start the humira treatment this week but I'm not one to dwell on my nervous shots stuff, I'm looking to make friends who just understand that life's different than your 20-something year old friends.

I'm into classic/art house/pop culture films.
I'm getting into yoga and meditation.
I'm teaching myself sewing and working on lounge/lingerie and workout clothes.
I read comics, sci-fi and how-to non-fiction.
Message me a quick hello : ]
 
Hi everyone I'm 23 and I'm glad that you made this post 😄.I was diagnosed with colitis at age 6 but after a few years my doctor confirmed that it was crohns.I live a pretty normal life I'm in college taking up nursing, go out with friends but I do have my bad days as well.It's interesting to find people who you can relate because when I was a child it seemed as if I was the only person with this disease but now that I'm older I have came across others my age with crohns as well.We have even become friends so it might seem like there's no one that understands but there is.I look forward to talking with you all
 
It's so great to have found this thread. While I wish that none of you had IBD, it's really nice to know that I'm not alone in all of this.

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

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

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

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

Did you all feel that surgery was worth it?

Also sorry for the personal question but for a 20 year old, I'm not feeling very uhmm.. How do you put it nicely.. In the mood? Does anyone else feel the same? I feel so bad for my poor bf! Haha!
I had my surgery at the age of 11 and before that I was home-schooled and always sick and in the hospital but after surgery I started feeling so much better.I was able to graduate with my class and now I'm 23 and in college taking up nursing and I'm healthy enough to have a job so in my opinion it's definitely worth it
 
im 23, been living with crohns for 9 years. 4 flare ups and my last one this summer was pretty bad. Im on remicade now and it's amazing. After 1 infusion I felt drastically better.

Its cool to see people my age with this illness. (well not cool, Im not happy about people being sick, but I'm sure you know what I mean..) Whenever I go see my doc I'm surrounded by old people lol.
 
@djious lol I know exactly what you mean.When I was going to my pediatric gastrointerologist I was always the oldest there but now I'm 23 and I'm always the youngest at the doctor so yes it's cool to see that there are others like you and can relate to you more
 
Im sure everyone feels the same but I just want to point out that we have our whole lives ahead of us and shouldn't let this control our lives or influence our decisions in life.

I never stopped playing sports nor stopped travelling, including cuba, I did get sick cause the food is just horrible quality, but not that bad.. was able to recover with antibiotics..
 
I was diagnosed this year in April, when I was 17 - I'm 18 now, and still have no idea what the future holds with this disease, because they caught it very quickly, and it's a very recent development for me.

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

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

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

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

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

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

I'm currently 25 years old, never had a bf, never been on a date lol (I've always thought life is like teh movies...guy comes to girl :) Never cared about appearances,etc.) I was diagnosed 4 years ago, and even though I've been pretty benign with my illness, and felt great for 2 years off meds...NOW that I want to go out there and date and LIVE...things are somewhat feeling not right at the moment. I've seen so many GI's, and I'm sticking with one (Mayo Clinic) about 4 hours away..and I wonder, what would a guy think if he knew my doctor is that far away?! lol. Or that I would have to restart taking an immunosuppressant?!
And the kicker is...I felt fantastic before, and I have this thought that I need to feel that way again before I can accept to date. I don't have bathroom probs, just abdominal pains that this time around have sprung up in new places (2nd time in 4 years I've had symptoms...) I feel like I'm waiting to feel 100% before I can LIVE...but reading this, it's humbling to know that hey, life is not perfect like a movie lol....
 
Hi! I'm 20 years old, living on my own since a little before my diagnosis out in California. I work two jobs, waitressing and editing, and I go to university full-time. I am dating and all of that as well. Weight yo-yos like crazy; 140 lbs naturally, 122 at my lowest low of a flare and 165 after prednisone (that awful nightmare drug, ugh). High, high pain rates for flares, plus nausea and loss of appetite. Using Remicade every six weeks, Norco for bad pain days, CBD/THC tentatively to try and find a healthy dosage.

I am so happy that you're all here, though of course not sick. I go to such ridiculous lengths IRL to hide being sick that I really needed people who were not doctors who knew andcould be talked to. I am exhausted.
 
It's so great to have found this thread. While I wish that none of you had IBD, it's really nice to know that I'm not alone in all of this.

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

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

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

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

Did you all feel that surgery was worth it?

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

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

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

Hope your trip is/was awesome :)
 
Sea_Star , I'm not over 21 but I have never dated anyone or been in a relationship ( other than with my bed ;)

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

theOcean

Moderator
This has been a very inspiring thread!

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

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

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

Movies are pretty unrealistic, especially about relationships and romance. So it's not a bad thing that things happen differently in real life, especially for those of us with a few health complications. :p
 
I met my gf and the same thing happened that happened to ocean. I haven't been as active on here cause of school and finals I have the last one tomorrow for the semester. Anyway. I had a flare that started after our one month. She's still with me. I lost 40lbs and then gained 70. Now I have to get into shape to be able to test for hopefully getting a job in policing. I ended up during the flare being in the hospital for a week and going on morphine and also Percocet,good times, lots of sleep. Anyway I'm good now. I have about 4 part time jobs and still don't make anything while going to school and being into a relationship. And I'll tell you this much, within 6 months I will ask this girl to marry me because she stood by me through the worst of it. I know the answer she'll say. I mean we already have a day picked out. I spent a lot of my money on a ring and let my prized possession (my car) to stay in slight disrepair. But the ring is paid off. She's wonderful. And I don't know what I'd do without her.
 
I can echo some similar things. I met my BF before my Crohn's started up, actually, and after several months he moved in. About a month later is when the Crohn's hit and I was in the hospital for 19 days as they tried to figure out exactly what was wrong and so forth. Plus I was very sick for a couple of weeks leading up to that. He took me to the ER at my doctor's suggestion that time, and he's taken me two other times for out of control migraines over these past 3 years. We're still together. Through my flare-ups, through the migraines that wipe me out, and the general being tired and sore that tends to be with me.
 
Lovely support group! I've just been diagnosed at 21 and need support from others my age. Anyone have any tips for the newly diagnosed?
 
24, just got my officAl diagnosis after a year of in and out houspital stays. Someone suggested I come here for support so I thought I would try it out.
 
I will be 17 in April. I was diagnosed June 6, 2014. I am fairly new to everything, but I know somethings.
I am currently taking Mercaptapour, Lialda, multivitamin, iron, and I was going to Remicade treatments, but it has caused my eyes to go very blurry and cause me to need glasses. So I am in need of a new treatment medication.
 
I will be 17 in April. I was diagnosed June 6, 2014. I am fairly new to everything, but I know somethings.

I am currently taking Mercaptapour, Lialda, multivitamin, iron, and I was going to Remicade treatments, but it has caused my eyes to go very blurry and cause me to need glasses. So I am in need of a new treatment medication.

I would see if your dr would allow you to switch to Humira. But also remember this, at 17 your eyes are still growing and changing. It could just be a coincidence that they happened at the same time.
 
Within the same year I was diagnosed my eyes were giving me problems and I ended up needing reading glasses. I doubt it was caused from my meds, just a coinsidence. However, it never hurts to ask about it.
 
Hey, I'm 26, but I was diagnosed at 22. I may or may not be out of remission, who knows, I'm showing symptoms but no visible inflammation.
 
What symptoms?
Abdominal pain, vitamin D deficiency, fatigue, joint aches (they come and go), pain after eating, nausea, and constipation. (I never had a lot of D even when I was first diagnosed). Scopes showed equivocal red lesions in the small bowel, but no obvious ulceration.
 
Hello everyone!

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

I am taking a health professions writing course at UC Davis and one of our assignments is to write case study. Originally I was going to use myself as "the case", but it turns out I have to interview someone else. Would anyone be interested in being interviewed? I'm asking on Crohn's forum because I don't know anyone (other than myself) who has Crohn's.
I'd be fine doing it, I'm pretty busy with school myself right now, but if you just sent me the questions over email or something like that I would be able to answer them for you, just let me know
 
Thank you so much. My professor will be discussing the detailed requirements for the paper early next week, but in the meantime can I have your email address so I can send you some information about it?
Again, thank you!
 
Hey hrogers I suggest you delete your post above with your email address. This thread came up in my google alert and showed your email address. With that info it isn't hard for people to find out who you are. Send the email address in a private message, not where everyone can see it.
 
Hey all,

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

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

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

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

Looks like a lot on here are newly diagnosed as late teens/ 20's. If anyone has random questions, needs to vent, I'm generally around - tend to know a thing or two (or an idea of where to look) - Or at the very least have an extensive line up of what is worth the time for Netflix.
 
Anyone goto crohns support groups? Why is everyone so old. I know a lot of us younger folks have it but do people our age just not wanting support. So frustrating!
I think no one our age goes because they are always at the most inconvenient times. Not that there is ever a "convenient" time with crohn's but 7:00 on a weeknight? I'm probably already in my Pj's due to low energy and if I'm not I'm at least thinking about it and wanting to spend that last alert hour or two of my day as it overlaps with that of my loved ones.
 
This is so great to have stumbled across this group. Ive recently had to quit college and move back home, where in i had my first hospitalization (with lovely steroid drip) followed by picc line, tpn, the whole deal. Currently weening off that beloved drug Predanazone, waiting for my bout with a drug called Humira.

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

Crohns Suffer 2.4.14, effecting entire small and large intest.
Guttate Psorisis.
Just broke free of picc line and tpn
Florida Native
 
I would see if your dr would allow you to switch to Humira. But also remember this, at 17 your eyes are still growing and changing. It could just be a coincidence that they happened at the same time.

any advance tips? Starting Humira this week, if insurance gets their shit together
 
One thing i want to know is, will i ever feel my age again? The fatigue, the always being sick, weak. I pushed myself to get a job, having been on bed rest for almost three months...but even that is so hard to physically do. But i cant very well put it off any longer..what if this is all the energy ill ever get? What if this is my normal now? I already-was pulled from my life at college and been cared for by my family, i cant stand to not be self sufficient any longer.
 
Hey Sunshine! Glad to see you're on here and taking an active part in treating your disease - certainly the right track to be on.

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

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

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

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

As for drinking I can't comment on the cider front because I've never liked the stuff. A glass of wine or a whiskey coke (I'm a sucker for whiskey) doesn't seem to be too much of a bother but beer can be mighty troublesome especially the darker ones. Although much of diet/ drink preferences just comes with trial and error and I swear it can change weekly/ monthly especially during flares. I tend to avoid drinking in general during a flare but make sure you check with your Dr. regarding what meds. you're on because alcohol can interfere with effectiveness, can add additional tax on the liver, or for some anti-biotics the most minuscule amount can result in nausea beyond belief.
 
23 here, just diagnosed with Crohn's of the jejunum and ileum two days ago (but was suspected for a good four months after a colonoscopy with characteristic inflammation in the ileum with a completely normal colon). Saw a terrible doctor at first (though I do have to thank him for performing that colonoscopy and being on the right track at first but missed other signs and screwed up my chart...long story short, here I am with this fairly uncommon presentation of Crohn's disease. Just started Pentasa today, been having all kinds of mixed feelings about the new diagnosis. But staying strong nonetheless.
 

SarahBear

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

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

What kind of job do you have?

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

any tips on drinking? Im a hard cider fan...but i believe it works against me. Wine, i havnt tried since my recent flare.
You might want to try small amounts of various things to see if there are any that don't bother you. Personally, I'm okay with anything that I've had several times previously in the last six months or so. If I try something new, it sometimes causes stomach pain the next day. Unfortunately, there was a bit of an adjustment period. I pushed through it because I was in remission - if you're not, you may want to either wait or proceed very slowly and cautiously.

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

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

http://www.crohnsforum.com/showthread.php?t=71970
 
hey guys, so im 21. Started Humira a month ago, had the four starter shots and then have given myself one since. The feeling of a bio changing my genetic makeup is something i hope to get over, but as of now i feel as if im made of glass. This i def a young persons disease, dont go thinking its only older folks. What i keep getting told is that us young people dont want to take the time to care for ourselves, which is partly true. ive been on a vaca from life since the start of 2015 and im just about fed up and not even close to my remission yet =( i gave up my beautiful little college life, my little apartment, all my friends and moved hours away for this treatment and to get my body back in good health. its hard....but we have to remember if we dont take care meow we wont be here long enough to actually enjoy the lives we are fighting to have!

Nameste! Sam
 
Hey Sam! That is very true what you say about taking care of ourselves now! I already feel like I have the body of an 80 year old with painful joints and everything else. But it's important to remember that we're still young and have our whole lives ahead of us!
That's really sad that you had to give up college. [emoji17]Do you plan to try go back once you get into remission? I wish you the best of luck with whatever you do!
Oh by the way, how is the humira working for you??
 
Hi Sam!
Best of luck to you and let us know how the Humaira works out..that's most likely what I will be going on too..you are so right we do need to take care of ourselves. I'm 27 and feel like I'm 72..I was diagnosed in March and I may already be going for surgery July 10 ..best of luck to you. Xo
 
So back in Feb i was hospitalized for the first time for my crohns, and since then have been on predanazone and recently started my Humira injections....my question to the group is....as dumb as i know this will sound, im mega depressed because i have gained so much weight and look so different from my pre flare self =( im so used to being a care free spirit that didnt care about her looks and focused on other things much more worthy of her time...but now i just get a horrid pang everytime i look in the mirror, and i have to buy and sew all new clothing...im so happy im alive, but im so different, even my likes and dis likes in food.

how do you re adjust to you again guys? Once im strong again i plan to work out....but i have no idea when that will be, if ever
 
and!! so sorry, i cant seem to figure out how to post, or reply...i think i might have replyed and not posted? not too sure....but i do eventually see the well wishes and kind words <3 thanks all. Humira is going ok, alot of scary new pain, i feel like i am made of glass >_<
 
Hi Sam, talking about readjustments?? It's been 3 years since I was diagnosed with crohn's and eventually underwent intestinal resection surgery.....I had to defer from academics twice.......and yet I am not sure how well I have readjusted myself. ....although I have made a lot of lifestyle changes.....I quit smoking, drinking and junk food completely.....staying away from junk food was actually tough since I was a big foodie. ...I indulge in junk food rarely but pay huge price for it later in the restroom :/ .After so many lifestyle changes i am still going through a very bad flare up again. ...i feel how many changes I make its just not sufficient !!
All that I can say is that, It takes time and lot of will power to commit to the changes you make in your lifestyle. Once you make the changes at least you don't feel guilty while you go through a flare up because you know it's not your mistake, it's just the nature of crohn's.....
 
All that I can say is that, It takes time and lot of will power to commit to the changes you make in your lifestyle. Once you make the changes at least you don't feel guilty while you go through a flare up because you know it's not your mistake, it's just the nature of crohn's.....
This is so true. I often find I get frustrated because I feel like I've lost/ changed so much to try to have a life I can enjoy and be proud of and still 8 years later the disease continues to rage/ be unmanageable. Early on in my diagnosis lifestyle changes were made in the hopes of managing/ helping things along. I looked at them as temporary. Sometimes it just doesn't work that way. I am certainly more diligent now when it comes to doing what needs to be done for diet, nutrition, and maintaining a sense of overall well-being despite active disease but such efforts provide more of peace of mind then relief from the disease itself.
 
Any other peeps on here taking their treatment and dosage into their own hands? Im starting to taper my Predanazone, cant stand the shakes anymore and how weak ive been. Havnt seen my doc in months, she and my nurses are waiting to see the results of the Humira in the 8th week, im on week 5 now and plan to taper the steroids down till the 8th week.

What do you guys think? You know your body better than a stranger with tests, also you never know what will Actually happen till you try. Tried a taco lastnight =D didnt hurt and made my mind happy so i believe it was worth the risk.
 
I guess it's always better if you meet your GI before starting to taper down the dosage. Even though the symptoms don't show up there is always a possibility that the disease activity might still persists within and the symptoms are suppressed by your meds. I tried to taper down the dosage once when i felt i was completely normal. I eventually stopped my meds completely. I felt really good, din't have any symptoms. But, all this lasted only till one month after which my symptoms began to show up. When i visited my GI and got my blood test done, the results were haywire my inflammatory markers were shooting up.

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

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

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

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

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

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

I have gotten close to landing there again recently - since even with medication raging can be the nature of the disease - but I'm alive, I've managed to stay out of hospitals by engaging the help of my medical team and family/ friends - and have my doctor's trust where I can call shots like... choosing to hold out on surgery for the hopes of healing to take out less, going "backwards" as a high-risk patient to a previous TNF blocker after working my way through all current available medications once. I don't think I'd have as much control in current treatment and future treatment options if I'd just thrown it out the window when I didn't like the current situation in the past instead of admitting to my doctor when treatment wasn't working for me, for whatever reason - disease activity, side effects, mentally, etc., especially early on learning to live despite disease and manage it regardless of status.
 
Welcome Cosmojo. It always makes me feel good to hear from grad students making it work. I'm starting an MFA program this Fall... I'm nervous, but at the same time having to fight a little harder made my goals and priorities that much clearer through the application process, so I also feel good about the path my life is taking.
any tips on "making it work"? I had to leave school for a year to get into remission and am scared i might have to pause my edu again in the future. Do you guys work part time or full time? Are you on any $$ aide?
 
you know what is pissing me off. Googling "how to lose prednisone weight" and the list being made up TOTALLY of foods i cant eat because of my crohns....that and these people are on 10mg or 5mg of pred...really? and your having issues? stfu.

im angry, every time i attempt a taper my pain comes back...sticking on 25mg till my Humira kicks in. I have all the side effects of pred, though. Moon face, swollen limbs, hump back, gut. My remission is #1 in my life currently, but im losing myself and feel just awful ='(
 
Keep it up! Frustrations and all the side effects, medications, etc. will come and go. As long as you keep your priorities and attitude you'll get to rocking life again no matter what it may entail or how the disease changes/ progresses.

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

What does your diet currently look like?

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

Also, you're never lost. Even when you may not feel yourself, you are still you. I don't know why but I've found that comforting in the past... like there's no guidelines/ constraints on who I can be so I choose to be me - whatever that may entail, even the less desirable bits I don't like - at any given time.
 
i mainly try and stick to slow sodium diet. If i eat something "normal" within the hour i feel like beat max walking around (big hero 6). I already have high cheek bones so when i get extreme moon face i cant see when i smile, i laugh it off but its hard....Honestly, while im on pred 25mg i just stick to liquid diet or bolthouse shakes or my own homemade protein shakes, maby eat one to twice solid foods daily but i dont push it for feeling so il when i do.
 
So frustrated with family and hearing the phrase "Let it Go". Frozen certainly hasn't helped make this phrase land in my top 10 "acceptable responses that exhibit support".

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

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

Anyone else get frustrated over being told they aren't themselves when flaring/ not feeling well? Cuz this one gets me, and it always seems to come from those closest to me and I have yet to find a reply/ response that is considerate rather then snarky.
 
any tips on "making it work"? I had to leave school for a year to get into remission and am scared i might have to pause my edu again in the future. Do you guys work part time or full time? Are you on any $$ aide?
Figured I'd answer since it doesn't look like anyone has yet.

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

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

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

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

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

On the financial front it really comes down to why you are attending higher education, where you hope to be/ go after school, the status of living you want to maintain during college, etc. Part time work could help you qualify for assistance programs which might work better long run in managing financial stress.
 
Panda, all i can say about moving home, i wouldnt have been able to stand it were it not for my mother who is my best and closest friend. She understood the emotional side effects before i even knew what was going on, shes been here to listen to all my aches and helps me find solutions when i am stressed, shes my advocate over all. all i can say is that if you dont have a person like this, find one, even if its a doc appointed psych you need someone on your side, someone at those appointments someone to just be there....i to this day keep saying *no no dont worry i can take myself* and yet when i get to the waitingroom i wish i had accepted the company.
 
So so true 💜 not sure where I'd be without my mom. She's at all my appointments, is my everything and has been there every step of the way, but she's had to learn to share me with my s.o. which I don't think she ever did despite that he had taken over with assistance things and being my second set of ears primarily up until this last year or so when things slipped too far to do it alone or afford all the costs and time on one income. She helps a ton but we still have some friction, especially right after I keep finding myself returning home. Tends to take a couple days to both settle a bit lol since its not my goal to live with mom and it's not hers either but we have different ideas on how those frustrations should be managed. I'm more vent and move forward while she internalized and explodes.

I'm definitely being a bit sluggish (ok annnnd kinda stubborn) getting on board (fingers crossed this one last time) to be home for medical rather then home in a year for a good not doctor centered visit like I'd left intending in May. This week I am about ready to set her loose on the docs offices I've been trying to make contact with to see if she can get somewhere with them that I've been unable to.
 
most fustrating thing is the fight with docs, im sorry your going through that. im in the fight with meds, @6mo mark on Pred, Humira is in its 8th week and i want to taper off Pred but i flare again when i try....mre was yesterday and 3rd colonoscopy was clear =)

its hard to get back out when youve been in healing mode, your wanting to get out there again soon though i can tell right? My goal is after Sept, i have roommates lined up, attempting to get on disability, and if i can nab that ill move for sure but if not....idk. Mainly its about staying in remission once i am. This year was so extreme with how far out i was taken by this disease i hope that this will be the worst ill ever see, and ill live the rest of my life knowing how to care for myself, and never be taken this far down again....also hopfully shall find a partner willing to endure with me, dating sucks man.
 
Ug, getting off of prednisone is difficult for sure. I've been steroid dependent for a while and fighting infections - weird how the prednisone side-effects have been acting this time around. I think it's the antibiotics but the moon face has been very... unpredictable. It'll show up, then settle down, then show back up but my left cheek is always a little fuller then the right no matter what stage it's at.

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

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

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

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

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

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

I hope that you see the best with Humira (SOON!) and it works for decades to come :) And a partner who isn't just willing to endure with you - but EXCITED to stand with you and face whatever may come by your side.
 
So I just turned 31 a couple of days ago...I probably don't count as a young adult anymore. (And my body feels much older, but that's most if not all of us.)
 
I'll count it! Gives me a good while yet here that way :) How's it going Elktrikhd - apart from feeling older then your number. And A Happy Late Birthday!
 
Thanks! If nothing else I'm still young in my head :)
Things are...going. I'm slowly still getting over a flare-up that started in December or so and worsened in March landing me in the hospital for a week. Work has let out for the summer (teaching), so I'm getting to rest more again. But I'm also quitting because it's just too much for me to deal with anymore, so I have some more work ahead of me, looking into disability and other job options in case disability isn't for me at this time. I was close to quitting last year, and it's only gotten worse. But there are still some positives in my life. 3 years with my boyfriend and it's still going well. Plus now if we feel like getting married, we can do that anywhere we go, not just in our own state. Other things are small by comparison...I like my car, our apartment has 2 bathrooms, and I have video games to play.
 
Glad to hear you're in a place to be able to start resting up a bit, life is otherwise pretty good, and you're still feeling young in the head! Sometimes I wonder if I'll ever really feel my age mentally or if it'll always feel younger, I like to think it's from my sense of humor, (potty-jokes were frequent in my house growing up and often encouraged at the table, never really grown out of that!) and general optimism regardless of circumstance :)

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

I found it very helpful to have my G.I. physician to write a letter to help support the claim, and to call monthly to check where things were (they never sent out a letter at one point, so things fall through the cracks frequently). I remember the stress of continuing to look for a job in case I wasn't approved too which was a stress all its own. The last few months in comparison to that waiting period have been such a break mentally, I hope the process goes quickly so you're not stuck in limbo long.
 
I returned to work after the hospitalization in March. I had a week of home rest, and then our spring break was the following week, so I had two weeks at home, and I really needed it. But it was really rough going back to work, and really I needed more time. Most weeks I wound up having to stay home a day or two because I was too fatigued or in too much pain or running to the bathroom too often (or sometimes just too stressed out and depressed to face work).

Today I cleaned my bathroom (there really wasn't that much to do), cleaned the stove, and did laundry. I'm exhausted. Of course, I've also barely eaten, too, so that's probably part of the problem. But it's a good sign that the prednisone is low enough now that my appetite isn't constantly out of control.
 
That sounds like a full day to me, the exhaustion is brutal. I remember before when things weren't in remission but at least managed and I could do the entire apartment in one swoop and still have enough energy to meet up with friends or go out for a bit in the evenings. Still usually was burnt out the next day a bit but fully functional and wasn't always needing to rest. Now, it's one chore/ room a day and afternoon naps or if I push it I'm asleep for the night by 8 with next day repurcussions. I think exhaustion and fatigue is my most despised symptom since its so unrelenting.
 
I'm still not used to my limited energy. I've always felt like I had less energy than most other people, but I still think I used to have more energy than I do now. I did a lot less today and I'm still kindof tired.
 
being young, with a disease, really sucks. Over the past half a year ive been strong. But today i am not so much. Seeing all my friends on facebook living, experiencing, going out and just Doing what young people do. Seeing my siblings and my twin brother in school when ive had to be out a year now, seeing your crush move on because you cant commit to another person right now because you need all you have to give....remission is close, and i know i matter and believe you me ive said all these things over and over in my head over the past months....but none of it will take away the sadness that is laying on your back with withdrawls of your medication, on the 4th of july....remission cant come soon enough, i miss my life, my body, my joy.

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

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

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

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

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

Happy 4th SunshineSam!
 
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I can relate to some of those things, especially seeing people going out and doing stuff. I'll look at Facebook on a Friday night when I'm getting ready for bed because I'm really tired, and see people from work posting that they're out somewhere drinking or something like that. And they're usually people 10 years older than me.
 
Hi everyone! I'm 14, and I'm new to the forum. I got diagnosed with Crohn's Disease a few months ago, because of severe pain in my abdomen that nearly sent me to the hospital, and left me bedridden for a couple of weeks. When I went to the bathroom, or the pain would come, it would be so bad I'd just lay there, and I'd be shaking when it finally went away. After about a week, I connected the dots that when I ate food, the pain got worse, so I started to eat as little as possible, and days after that I wouldn't eat at all. My apatite was completely diminished. My mom immediately scheduled an appointment with a pediatric G.I. , as soon as she realized something was really wrong, and I had an endoscopy and colonoscopy about a week later.

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

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

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

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

Thank you to anyone who actually bothered to read this whole thing. I know it's really long, and I have a lot of questions. I just really wanted to relate to some people who know what I'm going through.
 
When diet gets very restricted malnutrition can be an issue with micronutrients even if you're meeting your macro nutritional needs (fats/carbs/protein). Before going extreme with supplements talk to your g.I. and have them run blood work to check for any nutritional deficiencies and your parents may wish to also see an allergy panel ran to check for food and environment sensitivities. Diet has never been proven to cause or cure crohns but extra stress on the body can make everything function at a less optimal point.

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

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

can anyone comment saying they can relate?

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

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

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

im angry, every time i attempt a taper my pain comes back...sticking on 25mg till my Humira kicks in. I have all the side effects of pred, though. Moon face, swollen limbs, hump back, gut. My remission is #1 in my life currently, but im losing myself and feel just awful ='(
I was on prednisone when I got engaged. At the time it felt like the end of the world. I had the moon face, hump back, everything. It was awful. All I can say is try not to dwell on it. I know its soo hard, but it only makes things worse.
 
Caitlin, your posts are so well put and thoughtful.

Definitely going to be one to check out that book suggestion. I wish it wasn't true but I think body image is such a struggle after diagnosis and meds. - even being around the block several times it seems, at least in my experience, every flare results in a "new" body that requires its own process of acceptance.
 
Colette_osiris - Starting high school with Crohn's is a lot of stuff to be dealing with all at once. Mine didn't kick in until after I was out of school, so I can't give any direct input on that situation. Although coincidentally I'm a teacher, and I've missed work because of a flare-up and a year before because of a bad case of Lyme disease, and administration was not understanding in my case, either, and seemed to expect me to really hit the ground running when I came back to work, despite me telling them I was not back to 100%, just well enough to make it to work.

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

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

I don't usually have much hesitation in telling people that I have Crohn's, but I seem to be unusual in that. When I missed work for my flare up this year, and for the Lyme disease last year, people didn't really ask much about it. Maybe word had already gotten around from my friends who I had told or from administration when I let them know what was going on, or maybe most of my coworkers just don't care. You can probably just say you've been really sick and most people will leave it at that, if they ask where you've been.
 
How many of you are over 21 and have yet to go on a date or be in a relationship?

:)
meeee! I'm 21 and never been in a relationship! I'm too scared they'll find my bag gross to get too close to anyone... I'm too embarrassed of myself which is awful I know :/ This forum has been really encouraging and inspiring though :)
 
Sparkles, i suggest you go out on a date or two, see how you truly feel. im not really ashamed of my condition or embarrass *yay leo* however i found that i genuinely dislike dating and have decided to just take a break from it for now. Also, remember everyone has their nasty something in this life, sure your is a bag...but some people lack limbs or have a organ missing. Your still worth so much Sparkles <3 much love
 
Today i lost some of my resolve, Today everything caught up to me. Im finally in remission, tapering off all my hard meds and i can see the end. Looking in the mirror my once normal 21yr old body looks like a battle field. i have stretchmarks from the lbs the steroids gave me, i have track marks from iv's, bruises from recent blood trials, my cheek bones are returning from the effects of "moon face", psorisis is having a time eating me alive...but i made it, and though it really hurts daily, i am starting to re gain feeling in my body again (Prednisone is hell man). Honestly, it feels like my life is in the stage that resembles a sigh. Big, long, deep sigh....i made it
 
Keep on trucking along, so good to hear things are progressing well!

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

Sounds like you've crested a great big hill. Proud of you SunshineSam. Keep on breathing deep and putting one foot in front of the other!
 
Hi, I'm Amy and I'm 21, newbie from the UK. I fell ill late December, got the diagnosis through in May, and it slightly messed up my 3rd year at uni. I'd agreed to a work placement abroad before the illness started, and after having to give up a few plans I had for this year because of Crohn's I was determined to go through with it.

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

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