• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Young Adult Support Group

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

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

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

Can I ask about how people tell/explain to their friends? I never know how far to go. I don't want them knowing every last detail but my attempts at 'brushing it off' mean that people think I just have a stomach ache or a certain food intolerance.
 
Hey Amy. I've always found it helpful to direct friends/ curious people to the ccfa webpage and tell them you're always open to answering questions if you are. Then building off that regarding your experience, symptoms and medications or side effects.

It provides a pretty clear and non-overwhelming overview of ibd including crohns that acts as a pretty good starting point for others to come up with what they want to know rather then letting you flounder in the dark wondering who wants/ needs more or less info.
 
Hey AnnieYa! I moved to the Netherlands last summer for uni from the UK and first got ill this April. I've found the doctors here have been amazing! In case you haven't got round to it yet, the first thing you need is health insurance, I use VGZ and they've been amazing. I've now paid my full excess of 350€ and the rest of my healthcare is now basically free. Then choose a gp you like the look of and turn up and go register. Then once you get an appointment you should be able to get a specialist at the hospital. It's all fairly straightforward as long as you have health insurance. Actually I'm guessing you have an EHIC card? That should do. Good luck, let me know if there's any questions I can answer for you.
 
Hi AnnieYa! Don't feel like it's "pathetic" to have trouble dealing with it all on your own. I had my own issues when I moved away from my family to attend university, and I was only having fairly mild symptoms at the time. When I'm in a real flare and living alone, it's still a struggle. Hang it there!

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

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

Hope things look up soon! Let us know how things are going!
 
So ive been taken out for the count by Crohns for 6 full months now...the issues that are arising are difficult for my friends my age to understand, and even friends and family older as well. im off all meds but still experiencing fatigue and withdrawls. My issue is, how do i tell those who ask and care that i honestly wake up every day in huge amounts of pain? That my skin hurts all over from the withdrawls, that im mentally here but also not...this is getting old, though i know im on the home stretch of this first remission attempt.
 
So ive been taken out for the count by Crohns for 6 full months now...the issues that are arising are difficult for my friends my age to understand, and even friends and family older as well. im off all meds but still experiencing fatigue and withdrawls. My issue is, how do i tell those who ask and care that i honestly wake up every day in huge amounts of pain? That my skin hurts all over from the withdrawls, that im mentally here but also not...this is getting old, though i know im on the home stretch of this first remission attempt.
I stopped feel quiet so pressured to answer others in detail after coming to a realization that wanting or feeling a need for others to understand the situation is completely unnecessary for them to remain involved in my life. They do not need to share my pain to recognize my pain. They do not need to know the agony - mental or physical - to recognize that the struggle of this disease is downright horrific at times.

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

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

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

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

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

I swear one of these days i'm going to find a way to communicate things without so many words or seeming to talk in circles. But it looks like that day is not today, and I happen to enjoy circles :dance:
 
Hi! My names Allison and I am 20 years old. I just got diagnosed with severe crohns disease in November of 2014. I really had no idea what the disease was up until that point. Nothing led up to me getting sick, it all hit me pretty fast. Unfortunately I had no idea what I had gotten into.
Eventually I got so sick and ended up in the hospital because my heart rate was 175! Then they found out that my crohns had spread and it was drastically worse then when I first got diagnosed. I have 2 inches towards the top of my stomach that isn't infected, the rest of my colan, small and large intestines is infected. TWO INCHES of normal, healthy intestine (what the heck)

Anyways, I'm here to talk if anyone ever needs it (even though I am fairly new to the disease I still want to be of support)
I also want to get to know other teens out there going through the same thing as me!
 
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So back in Feb i was hospitalized for the first time for my crohns, and since then have been on predanazone and recently started my Humira injections....my question to the group is....as dumb as i know this will sound, im mega depressed because i have gained so much weight and look so different from my pre flare self =( im so used to being a care free spirit that didnt care about her looks and focused on other things much more worthy of her time...but now i just get a horrid pang everytime i look in the mirror, and i have to buy and sew all new clothing...im so happy im alive, but im so different, even my likes and dis likes in food.

how do you re adjust to you again guys? Once im strong again i plan to work out....but i have no idea when that will be, if ever
I just started on Humira and Azothiprine and it has helped me so much. Just stay strong, once your body gets used to it all you'll be back to your normal self (at least thats what Ive been told) I think its better than feeling awful and sick all the time
 
whats the expected time it takes to get back to normal? Or is that mindset wrong, do you think. Im getting off all meds but still really weak and bloated and nasty. Hows its going for you ladies? i would love to add you guys on fb, so i can really have some real friends going through what i am and at the same age as well. Same pic, lastname is French. hope you look me up Duh_panda and allison_x
 
Sent You a FB friend request :) Might be kinda confusing since nothing on here really connects to any other online presence other then the blog link in my signature >.< But there ya have it. If anyone else wants to add me name is Kyra Gee, same location info as listed here.

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

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

Have you been pursuing exercise? What kinds? I was a bit nervous about starting to push my body with some circuit and strength training instead of just my usual walks or yoga but have noticed while I'm wiped out a bit earlier in my evenings; energy, while low, is more consistent throughout the late morning/ afternoons which helps me better manage my days. Also, seems to help with bloating/ abdominal discomfort a bit better then the days when I don't push it a bit with physical activity. I hadn't realized before but prednisone doesn't just tax the body's absorption and use of calcium for its own devices - it also takes a tole of muscles/ ligaments requiring protein too. Once I start feeling well enough and like the disease is managed enough always seems like instigating exercise and fitness goals brings back the normal feel to life even if I'm far from the idea of a normal, healthy body.
 
Thanks duh panda, that was exactly the message I needed to read tonight. I'm far from remission but starting to feel like this crappyness is maybe my new normal and I've been wanting to get back in the gym. I used to work out 5-6 times a week before I got ill and I miss it so much! So reading how it makes you feel better really boosted my spirits. I think I'm going to try a light workout tomorrow, maybe it might even help my arthritis! So thank you again, I really needed that boost [emoji5]️
 
whats the expected time it takes to get back to normal? Or is that mindset wrong, do you think. Im getting off all meds but still really weak and bloated and nasty. Hows its going for you ladies? i would love to add you guys on fb, so i can really have some real friends going through what i am and at the same age as well. Same pic, lastname is French. hope you look me up Duh_panda and allison_x
I added you!
 
I can't wait to get back to yoga and dance. Right now going to a Dr. appointment leaves me so exhausted I'm sick. I used to think sleeping all the time would be great--now I know its just super boring!
 
Just an update. The Dutch healthcare system didn't go great. I got worse to the point of the most extreme nausea I've ever had, couldn't stand the smell or sight of anything which was potentially food/drink related. An urgent appointment wouldn't be possible till the end of October. I ended up flying back to the UK last minute to get an emergency appointment there. The weight loss wasn't as bad as I was expecting since I was weighed about two weeks ago - I seem to drop rapidly then hit a point where my body struggles to get below about 8 stone (~54 kg).

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

How is everyone feeling?

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

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

How is everyone feeling?

Oh, and Caitlin, I heard that yoga is good for Crohn's? All that stretching looks kind of painful.
Glad to hear that while things didn't go as smoothly as planned you're doing what's needed to take care of your health and the steps to get everything lined up in a new system.

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

here is my bit of wisdom from Fl USA!

Rompers, Rompers ROMPERS!!! So cute so good for your gut and no one can see your prednisone gut ^_^
 
been awhile since ive visited the page? Welcome all new peeps!!



here is my bit of wisdom from Fl USA!



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

What are rompers. This time last year I was 5'11 and 100lbs. Now I'm 178. This weight difference is big and makes me feel fat. On pentasa and Humira and now out in the adult world but seem to be symptom free
 
Have you seen 27 dresses? It's doable.
Lol, that is a perfect parallel.

What exactly are groomsmen supposed to do? I've always thought they're a bit more of a wedding accessory that helps break stuff down at the end. At least, the weddings I've been in and to that's about all the groomsmen seemed to do and the best man's job was just to make sure the groom was waiting for the bride before she hit the aisle. So, you should be good... unless ceremony's are at the same time and in different states or there is a similar such complexity to the situation. In that case... I'd go to whichever wedding is sure to have the best food and/ or entertainment because we all know the cake is never as good as it's hyped up to be ;-)
 
What are rompers. This time last year I was 5'11 and 100lbs. Now I'm 178. This weight difference is big and makes me feel fat. On pentasa and Humira and now out in the adult world but seem to be symptom free
a romper is a dress with pant legs lol shorts. its a one piece so no waist line, and you can get some to cinch right at the small of your waist or just lay on you and have no definition which works with a cute pattern so you dont look big or small you just look like a bod lol
 
Hopping in here >.> <.< just past 18 recently but I still feel like I'm ending up with a huge disconnect from everyone I know <.> ah well, I try. I'm on such a reverse schedule right now, sunrises are becoming the new sunsets for me xD
 
Heeey so I'm new to the forum but not so new to Crohn's, I was diagnosed at 14 and now I'm 20! Anyway I just recently stumbled across this site and here I am! My name is Andra btw and it's nice to meet you all :)
 
G'day, I'm 29, was diagnosed with Crohn's this year... well, it was about 6 months ago now, so I'm really over telling my friends and flatmates that I'm sick, I just say other things like 'I already ate' or 'I'm just feeling tired'.

I really wish there was some alternative to strong drugs, but after reading comments on the forum for a couple of hours, seems that everyone is taking drugs. Can anyone give me advice about long term side effects? A bit of nausea is alright but I don't want to treat my CD with something that causes something worse. I can't take Imuran because my white blood cells bombed, but my dr seems to think I could try it again because he's not sure it was the Imuran causing the blood problem >.<

I'm on Humira at the moment (2.5 months), it seemed like it was working but the last month my symptoms seem to have been coming back (is that normal?). They want to put me on Mtx (can't spell it) as well as Humira. I'm a bit scared of the drugs because I have no idea what they're doing to me and my doctors just keep saying they're really safe.

Last question, does anyone know of any support forums in Melbourne near the CBD?
 
G'day, I'm 29, was diagnosed with Crohn's this year... well, it was about 6 months ago now, so I'm really over telling my friends and flatmates that I'm sick, I just say other things like 'I already ate' or 'I'm just feeling tired'.

I really wish there was some alternative to strong drugs, but after reading comments on the forum for a couple of hours, seems that everyone is taking drugs. Can anyone give me advice about long term side effects? A bit of nausea is alright but I don't want to treat my CD with something that causes something worse. I can't take Imuran because my white blood cells bombed, but my dr seems to think I could try it again because he's not sure it was the Imuran causing the blood problem >.<

I'm on Humira at the moment (2.5 months), it seemed like it was working but the last month my symptoms seem to have been coming back (is that normal?). They want to put me on Mtx (can't spell it) as well as Humira. I'm a bit scared of the drugs because I have no idea what they're doing to me and my doctors just keep saying they're really safe.

Last question, does anyone know of any support forums in Melbourne near the CBD?

Hey esther, welcome to the forum.

In the most condensed of explanations, the reason for long term use of medications in treating crohn's disease is for maintenance of disease. Medications such as biologics like Humira are to reduce inflammation throughout the digestive tract. Management/ treatment of inflammation is important as it seems to be the base cause to crohn's complications including fissures, fistulas, stricturing, and bowel obstructions. These complications are the primary cause that leads to surgery in crohn's patients. Therefore, preventing and minimizing their manifestation is key in maintaining a patient's well-being and reducing the likelihood of needing surgery.

Unfortunately, side effects of crohn's medications can be serious; however, crohn's can also be very serious ranging from mild to acute cases in presentation of symptoms both short and long-term. It is your medical team's job and responsibility to inform you of both how the medications work, why they suggest combining certain medications, the potential side effects - over short and long term use, the serious side effects to be aware of, and whether or not it is a viable option for how you wish to live your life. You can always check out the forum threads for Humira, Imuran, and Methotrexate (MTX) to see how others are doing with those treatments, a lot discuss side effects, basically their experience with it.

If you don't feel comfortable with your treatment plan, or have questions, do call and talk to your doctor. Keep calling and keep pushing if they seem slow or hesitant to follow up. A week is too long to not hear from a medical office - either the doctor directly or one of their nurses.
 
Hi panda, thanks, you sound like a really reasonable and logical person. I'm usually the logical type but I think the emotional factor was getting to me a bit yesterday! Anyways, it's hard to make these decisions -- how can you decide between two unknown outcomes? -- and I've not yet decided to surrender all control to doctors, so for me I guess I'll just try to be well informed and pray about it and decide that way.
 
Hi panda, thanks, you sound like a really reasonable and logical person. I'm usually the logical type but I think the emotional factor was getting to me a bit yesterday! Anyways, it's hard to make these decisions -- how can you decide between two unknown outcomes? -- and I've not yet decided to surrender all control to doctors, so for me I guess I'll just try to be well informed and pray about it and decide that way.
For me I think it was a little easier - I was diagnosed as a teen so while I was involved in the decision making I relied heavily on doctors and family for guidance early on - there also weren't as many options for medications so I've worked my way through medications as I've failed one and making the switch as a new one becomes available using prednisone as a bridge. As an adult I've considered what I'd like to do (for example, have children or not - some medications such as MTX are known to have potentially negative impacts on a fetus) because a treatment plan I can follow through on is important to me. I switched from Remicade to Humira when it was approved because it was more convenient while attending university. Those are some reasons that have lead me to pursue one medication or combo of medications over another and help choose a course of action.
 
For me I think it was a little easier - I was diagnosed as a teen ...
It's strange, there are many things outside our control in life, but when the loss of control is unexpected, it's still so frustrating. I never expected to end up on long terms drugs (lol!). Was it easier to accept as a teen, or does it get easier the longer it's part of your life?
 
Hey! I'm sorry you have to deal with all of this, I know for me personally it's gotten easier to accept as I go through life. I was diagnosed as a teen, and I know it was difficult because it felt unfair that I had to worry about medication and what I was eating and what my stool looked like while all my friends were worrying about who liked who and clothes and makeup (honestly looking back I realize I was spared a lot of drama cause I didn't waste time worrying about those things haha) but at the same time I can imagine that it would be difficult to get this diagnosis after you've got your life figured out. It's not easy to accept at first but it does get easier. Sometimes there's a lot of frustration and tears but it's a lot easier when you can find a good doctor that you can trust and feel comfortable with and a good support group of friends and family that will support you. As far as the medications, I would encourage you to do as much research as you can and definitely ask your doctor if you have questions, I know the reason for having the MTX with the Humira is cause it keeps you from building up those antibodies to the Humira. They've done studies of the long term effectiveness of Humira or Remicade by itself verses the effectiveness with MTX or Azithoprane and its siginificantly more effective to manage symptoms with the two together.

I hope this helps some and best of luck!
 
I totally agree that while it doesn't necessarily make it easier, time gives perspective.

As for meds, I can honestly say my problems have always stemmed from not taking them, rather than taking them. One surgery later and a foot of intestines later, I will never try to manage my Crohn's on my own again.
 
Thanks Andra, yeah my doctor said that pairing the meds was to stop antibodies, but somehow it feels better to hear it from an independent source. I know we're all not doctors and to some extent we have to trust what they tell us, but it's nice to hear feedback from others who have been through this before me.

I'll definitely take your advice to research more. But there are some things it's hard to find out through research. At the start I read in so many places that stress doesn't cause CD so I believed that, but then when I heard somewhere that it did, I started finding all these contrary opinions. The official information about the drugs is a bit hard to contextualise, for example, if there's a one in blah-blah chance of serious infection, what does that really mean? So yeah... it's helpful to hear from people who have taken them too.

I totally agree that while it doesn't necessarily make it easier, time gives perspective.

As for meds, I can honestly say my problems have always stemmed from not taking them, rather than taking them. One surgery later and a foot of intestines later, I will never try to manage my Crohn's on my own again.
Lol, I always think alternative therapies will work (because the people who talk about them are SO convinced, right?) but then they never do. You'd think I would have learned by now!^^
 
Lol, I always think alternative therapies will work (because the people who talk about them are SO convinced, right?) but then they never do. You'd think I would have learned by now!^^[/QUOTE]

The double edged sword of hope, right?
 
Oh, I really wanted to go to the young adults support group in Collingwood, Melbourne (Australia) and no one replied to my email so I just rocked up... but the meeting place is closed for refurbishment. :((((((((

I don't even know if this support group really exists, or if it's just a hang-over internet notice that no-one ever took down.

Really depressed right now... I was so looking forward to spending some time with people who might understand...
 
Hello everyone! My name is Athena, and I am 24! I am from western N.Y! I am very new to having Crohn's (my first Crohnsiversary is 12/31). I am currently on Remicade, but found out today that it is not working for me . I have no idea what will be next for me, but I do know that my next treatment calls for "a change to another type of therapy (not targeting TNF-alpha) may be appropriate."

Anyone else wish their Crohn's would just disappear? Haha.

Athena!
 
Hello everyone! My name is Athena, and I am 24! I am from western N.Y! I am very new to having Crohn's (my first Crohnsiversary is 12/31). I am currently on Remicade, but found out today that it is not working for me . I have no idea what will be next for me, but I do know that my next treatment calls for "a change to another type of therapy (not targeting TNF-alpha) may be appropriate."

Anyone else wish their Crohn's would just disappear? Haha.

Athena!
Welcome to this forum. Yes, I definitely wish it would disappear. Best to you. I was on Remicade but I had a rare side effect with it and had to stop.
 
can relate to so many of you who are struggling with work. Was diagnosed with Crohn's 2 years ago (now 23) and I purposely jumped into my education right after highschool as I was very sick then and knew I had to find stability quick. Wasn't diagnosed with Crohn's till 7 years after a long battle of misdiagnosis. All my highschool years spent sick. Now as a working professional in the schools my anxiety is on high alert as I'm having to take sporadic days off. I'm constantly in fear of getting a call saying I've been let go. I have nightmares about it all the time. I had to put a medical accommodation this year already which is tragic. I wasn't expecting my life to be like this at such a young age. I look at my friends and they are still in UNI having a good time and I'm here having to plead with my body to just get thru one more day.
 
can relate to so many of you who are struggling with work. Was diagnosed with Crohn's 2 years ago (now 23) and I purposely jumped into my education right after highschool as I was very sick then and knew I had to find stability quick. Wasn't diagnosed with Crohn's till 7 years after a long battle of misdiagnosis. All my highschool years spent sick. Now as a working professional in the schools my anxiety is on high alert as I'm having to take sporadic days off. I'm constantly in fear of getting a call saying I've been let go. I have nightmares about it all the time. I had to put a medical accommodation this year already which is tragic. I wasn't expecting my life to be like this at such a young age. I look at my friends and they are still in UNI having a good time and I'm here having to plead with my body to just get thru one more day.
I feel you Sarah. I'm 19 and currently in my second year of uni , I've had to defer for 6 months already and have been in and out of hospital for a year. I'm back this trimester and have already missed a class and have had surgery and been into emergency. I've gone back to work after 5 months and have done 3 shifts, as their watching me closely. I went into emergency last Friday and told my boss that I'd keep her updated (never said I couldn't make it) and then the next day said I was fine to work and she pulled the "it's getting really hard because you're always sick"... I cry almost every day because I watch all my peers and family travel and work and go to uni so easily. But I struggle to get out of bed, or even eat for days or leave the bathroom. I feel so alone in the world...
 
I feel you Sarah. I'm 19 and currently in my second year of uni , I've had to defer for 6 months already and have been in and out of hospital for a year. I'm back this trimester and have already missed a class and have had surgery and been into emergency. I've gone back to work after 5 months and have done 3 shifts, as their watching me closely. I went into emergency last Friday and told my boss that I'd keep her updated (never said I couldn't make it) and then the next day said I was fine to work and she pulled the "it's getting really hard because you're always sick"... I cry almost every day because I watch all my peers and family travel and work and go to uni so easily. But I struggle to get out of bed, or even eat for days or leave the bathroom. I feel so alone in the world...
20 here.

hey you. You're amazing. Most people would give up. Keep fighting. :C
 
It's a tough battle trying to find balance between personal identity vs the identity with a sickness. There's often times I wish for that 'typical' life without barriers but I try to believe there is a purpose beyond all of this mayhem. Still trying to find mine.

Be strong. Be kind to yourself. I'm here if you ever need someone to talk to.
I feel you Sarah. I'm 19 and currently in my second year of uni , I've had to defer for 6 months already and have been in and out of hospital for a year. I'm back this trimester and have already missed a class and have had surgery and been into emergency. I've gone back to work after 5 months and have done 3 shifts, as their watching me closely. I went into emergency last Friday and told my boss that I'd keep her updated (never said I couldn't make it) and then the next day said I was fine to work and she pulled the "it's getting really hard because you're always sick"... I cry almost every day because I watch all my peers and family travel and work and go to uni so easily. But I struggle to get out of bed, or even eat for days or leave the bathroom. I feel so alone in the world...
 
I was just diagnosed. It's been the scariest week of my life and it's only the beginning. I turn 27 this year in October...
 
Newly 24 and I was diagnosed in my early twenties. Pretty difficult trying to adjust to adulthood dealing with all the feelings of unwellness. Beginning highschool I was sick---doctors couldn't figure out anything yet now that I look back the Crohn's made perfect sense. Quickly got an education---sort of settled for something I could start paying my dues too so I'd have some support if I need to go on LTD. Lots of pressure to do everything quick...


Now I'm 3 years in working at schools and I'm at a loss really. I love my job. It was a great choice for me then but I wish I had a chance to enjoy university... instead I felt in a time crunch to get everything done if my conditioned worsened.

Moral of the story is---take your time.. even if it takes longer you'll appreciate your education far more
 
LilMissCrohnie, thank you..

MizzSarah, that's quite the story. It all makes sense to me as well. I started college, starting getting a little worse and it ended up ruining the community college for me. Then I got better and was on top of the world (aside from anxiety) got married and moved into our first house. But over the last year 2016 mostly, nobody could figure out what was wrong I had clean colonoscopies, endoscopies, blood results. Then I got c.diff from the guessing of what's wrong with me and that was one hell of a time to fight. Soon after c.diff after 4 relapses, they found the Crohn's disease. It's absolutely insane... I was just getting ready to have a family and now I am not even sure how to go about that, it's absolutely just mentally wrecking.

I run a positive news website that I have been having trouble managing as well. I'm sorry for rambling... I just feel so 'cheated.' I have always been the person bringing people up and here I am at the lowest I've ever felt in my life.

Literally, the lowest... Growing up with an abusive father doesn't seem as painful as learning you have Crohn's... sigh.

Thank you for the love.
 
if your hoping to start having children soon there is a forum somewhere on here where you can communicate with women trying to conceive etc. Definitely mention to your Gastrointestinal that your hoping to start trying for a family. There might be some changes to your Meds etc.


I hope to be in a place soon where I want to get married and have kids. I'm still in the yuck feeling where I don't feel the greatest and why would anyone want me.

Don't want this disease to sabotage my life but it's already happening.


Keep fighting for something that works for you. There might be that one thing that you stumble across and you'll be like where we you all this time?


LilMissCrohnie, thank you..

MizzSarah, that's quite the story. It all makes sense to me as well. I started college, starting getting a little worse and it ended up ruining the community college for me. Then I got better and was on top of the world (aside from anxiety) got married and moved into our first house. But over the last year 2016 mostly, nobody could figure out what was wrong I had clean colonoscopies, endoscopies, blood results. Then I got c.diff from the guessing of what's wrong with me and that was one hell of a time to fight. Soon after c.diff after 4 relapses, they found the Crohn's disease. It's absolutely insane... I was just getting ready to have a family and now I am not even sure how to go about that, it's absolutely just mentally wrecking.

I run a positive news website that I have been having trouble managing as well. I'm sorry for rambling... I just feel so 'cheated.' I have always been the person bringing people up and here I am at the lowest I've ever felt in my life.

Literally, the lowest... Growing up with an abusive father doesn't seem as painful as learning you have Crohn's... sigh.

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

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

- Has IBD affected your educational opportunities and choices?

- Has IBD affected your independence from your family?

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

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

- How do you think dealing with IBD as a young adult is different from dealing with it as a child or an adult?
Hi ya'll! I'm 25 and quite often get the "you're too young to have all of these problems!" or "just wait till you're my age; then you'll know what true pain/ illness feels like!" :angry-banghead: I really struggled with being around friends/ away from home because you never know when you'll need to find a bathroom, and that can be really embarrassing, especially in dating situations. Both of my parents are deceased, but I have to live with my stepdad and sister because I can't afford to live on my own while simultaneously drowning in medical debt. Thankfully, my educational and work choices haven't been affected much yet. I want to get my masters and be a physician's assistant, but I worry that being in medicine (which really is my forte) could pose a significant risk to my health, especially if I'm put on Remicade or another biologic. IBD has made me hyperconscious of my body and my imperfections, including abdominal scarring from surgery. I honestly shouldn't complain; I only have four laparoscopic scars from a cholecystectomy. I don't know if anyone else feels this way, but I feel like having IBD as a young adult makes things incredibly complicated. If you're a child, you're likely not dating, and social situations are much more fluid for children in general. Also, you don't have to worry about the financial aspects of your illness much, and someone calls the shots for you. You don't have to work, or worry about not being able to work. For a lot of adults, you're in a more concrete place in life; you may have a romantic partner and friends that have been around for a while, and adults in general tend to be more open minded about life's curveballs. Adults typically also have a more stable work environment, and that tends to give them a little more wiggle room on the employment end. Also, bathroom humor (or talk in general) tends to make young adults without IBD squeamish. All in all, I think IBD has its own difficulties for each person regardless of age, and I don't think its "easy" for any of us. I feel that IBD, alongside my other life experiences, has matured me far beyond my years. Thanks for listening to me ramble!
 
Hello all, my name is Donovan Smith and I am currently a 20 year old college Junior at Mississippi State University working towards a degree in Aerospace Engineering, and I am a member of the professional engineering fraternity known as Theta Tau. I have been diagnosed on the 16th this month with Crohn's Disease and Ulcerative Colitis. I'm currently on my third week of prednisone with tapering doses for another month and am supposed to start treatment asap next month. It's been hard transitioning and figuring out my lifestyle again especially with diet and sleep changes. Any advice will be greatly appreciated, especially if anyone can help me figure out how to sleep longer at night without having to wake up multiple times to bowel movements, if that's possible...I need advice with diet too.
 
@ donovan.smith: College was a lot easier for me once I identified my triggers. Is stress a trigger for you? I recognized stress was a trigger for me as a teenager and I worked hard to eliminate it. I practiced lots of Buddhist techniques, perhaps too much. I now have an unemotional "nothing really matters attitude" that depresses some people when I talk to them.

Probably even more effective would be to identify any food triggers. The sooner you identify these, the better off you will be.

I haven't had the excessive bowel movement issue since high school after making drastic diet changes (talk it over with your Dr. of course).

At one point I tried to fight the urge to go and I was able to eventually go longer without using the restroom but it probably did more harm than good to my digestive tract. I wouldn't recommend this.
 

emmaaaargh

Moderator
Staff member
Oh hey I guess I count as one of these now! I turned 20 in August and completely forgot about this support group since nobody had posted here in so long. So there's someone else in this category still on the forum, at least :)
 
Would anyone be interested, whatever age btw- in making a discord group to talk to eachother on? :)

Or does anyone know of a server I can join that is for the IBD community? I think it would be a good idea, to help others connect.
 
Hello all, my name is Donovan Smith and I am currently a 20 year old college Junior at Mississippi State University working towards a degree in Aerospace Engineering, and I am a member of the professional engineering fraternity known as Theta Tau. I have been diagnosed on the 16th this month with Crohn's Disease and Ulcerative Colitis. I'm currently on my third week of prednisone with tapering doses for another month and am supposed to start treatment asap next month. It's been hard transitioning and figuring out my lifestyle again especially with diet and sleep changes. Any advice will be greatly appreciated, especially if anyone can help me figure out how to sleep longer at night without having to wake up multiple times to bowel movements, if that's possible...I need advice with diet too.
Hey dude been dealing with this stuff for years. Message me with any questions you may have! :)
 
Not tried Miralax before (or gatorade for that matter) but the moviprep I had to drink 2ltrs of the stuff. It was just get it down as fast as possible and make sure I had a book nearby
 
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