Living with Crohn’s as a Child

[AdamShoberg]

My story
Hello, my name is Adam Shoberg, I’m 16 and I live with Crohn’s disease. I was diagnosed last year sometime around March. Living with Crohn’s certainly comes with its challenges but I try not to think all negative.

It all started with weight loss and quickly things got worse. I went from weighing around 120lbs to 99lbs within a 2 month period. Throughout the day I would use the bathroom up to 7 times, and in the night I would be woken up with severe cramps and urges to use the restroom. Sadly at the age of 16 I have little energy from crohns, something all too common with people like me...

I believe my disease has been induced by stress and the garbage foods I consumed(My own ignorance). I also had a very hard time sleeping for months prior to diagnosis, something I have struggled on and off.

After 2-3 months of symptoms I went into see a GI where I was told I needed to have an endoscopy and colonoscopy (very freighting at the time). After the the procedure I was told I had Crohn’s and I was mentally crushed, I hadn’t even heard of the disease until then. When I got home I just cried my eyes out. “why me? What have I done to deserve this?” Were the only things on my mind.

Some challenges I face are weight loss(really hurts my self esteem), nausea, vomiting and diarrhea. The most impactful side effect personally is the mental impact. I have felt overwhelmed with anxiety and depression. I feel like I’m not a normal child anymore, I’m just that sick child that all the relatives feel bad for...

My medications given to me were prednisone(1 month use), and methotrexate (80mg shots). I quickly entered remission but I had a tendency to get nauseas from the methotrexate. They proscribed me a anti nausea that didn’t help at all.

Then something changed for me, a bit of a turn around. With a bit of recreational use I soon started to realize cannabis helped my symptoms, especially the nausea. I eventually on my own free will told my parents about my cannabis use( illegal at the time) which didn’t please them. With lots of talks and discussions I convinced my parents to enroll me in Minnesota’s medical marijuana program and I can proudly say I am a medical marijuana patient. The cannabis helps a lot and I am thankful I live In a state that allows me to get access to my medication I need. I would definitely recommend IBD patients to try cannabis not as there main treatment but more as a therapy when needed.

 

[Jo-mom]

Hi Adam - thank you for sharing your story. I understand having crohn's as a teenager is difficult and weight loss for an already small frame does play with your confidence. Sounds like you are doing better. What you have eaten in the past would not have given you crohn's so don't blame yourself for having it. They still don't know the cause of crohn's. Of course eating a balanced diet is always a good idea.

Don't be afraid to share with your friends what you are experiencing. There is nothing to be ashamed of. Everyone has some sort of challenge in their life. You probably have friends that have things going on with them as well. My son has crohn's and learned that one of his closest friends has Celiac Disease, and another suffers from depression. He accepted that this is what he has and all his friends know. He speaks freely to people about it. One day you might be able to help someone else.

You mentioned you are on cannabis and it is working. Are you still on methotrexate? Just want to make sure that you are following up with your specialist appointments.

I wish you all the best.

 

[AdamShoberg]

Hi Adam - thank you for sharing your story. I understand having crohn's as a teenager is difficult and weight loss for an already small frame does play with your confidence. Sounds like you are doing better. What you have eaten in the past would not have given you crohn's so don't blame yourself for having it. They still don't know the cause of crohn's. Of course eating a balanced diet is always a good idea.

Don't be afraid to share with your friends what you are experiencing. There is nothing to be ashamed of. Everyone has some sort of challenge in their life. You probably have friends that have things going on with them as well. My son has crohn's and learned that one of his closest friends has Celiac Disease, and another suffers from depression. He accepted that this is what he has and all his friends know. He speaks freely to people about it. One day you might be able to help someone else.

You mentioned you are on cannabis and it is working. Are you still on methotrexate? Just want to make sure that you are following up with your specialist appointments.

I wish you all the best.

Thank you for your reply, I really have been feeling desperate and that’s how I got here. Seeing that I had one reply and knowing someone out there cared enough to read my story and write back literally brought me to tears. As for your son I hope and pray for his well being. Has he had Crohn's for awhile now?

I still see my specialist at the children’s hospital, and in August I have my second colonoscopy/endoscopy to make sure I’m in full recovery which is a big yay. As for the methotrexate It just became to much to bare. I just started my first round of humira and I don’t have the Neusa anymore. Sadly I still don’t have the energy I would liked to have seen.

This year I moved schools again for the 3rd time and I lost my ONE friend I felt like I could relate with who suffers from type 1 diabetes, now I have no one. A couple of my “ new friends” know about my crohns and they make jokes thinking it’s all fun and games. I go along with it and act like it’s funny out of embarrassment. I don’t blame them though because all they know is I’m “fine” and that maybe they are cheering me up. In reality it cuts like a knife.

I don’t even really talk to my parents about my crohns and how I truly feel, when they ask I just tell them I’m “great”. Yes I know it’s bad but they have enough on there plate, I am a huge financial burden that’s enough for them to worry about.

Lately I have locked myself away from the world, spending hours apon hours playing computer games. A couple of people I like at my school have said they noticed a change in me, but I don’t let them in to know what’s really going on. I’ve just learned to shut the whole world out. I feel like I, and people who are like me don’t belong on this earth...

 

[Jo-mom]

Adam, I'm so sorry you are going through this and feel alone. This forum is really good and I am glad you found it. My son is 20 now and officially diagnosed last year,however, he probably had crohn's for a few years. He also has arthritis that is a result of the crohn's. He had a couple of bad years. He is doing much better now and is being treated with remicade. I know you said your friends make jokes about your crohn's. That is usually a natural response, especially from teenagers and young adults. They don't know how to react so joking always feels safe. It doesn't mean they are making fun of you. My son makes jokes to his friends as well and his friends probably joke back, but they really are cool with everything.

You are not a burden, remember that. With time, you will be able to navigate through this, and you will find friends that respect you for who you are, not what you have.

We are hear for you if you need to vent or if you aren't feeling well and want advice. You should really tell the friends that you like how you are feeling. You will be surprised at how supportive they can be, or just talking makes all the difference.

Big hug.

 

[my little penguin]

It does get better
My kiddo was dx at age 7 and now is 15
Humira takes time to work but can work great
Ds was on it for over 5 years

Have you looked into camp oasis ?

https://www.crohnscolitisfoundation.org/get-involved/camp-oasis
Summer camp for kiddos woth IBD
They various locations across the US
There are teen groups here
There are teen groups through the improve care now consortium

https://www.improvecarenow.org/toolkits_and_guides
Your Gi should also have teen groups
Talk to your Gi and parents
They can help

It does get better

 

[my little penguin]

Oh and my kiddo eats food but also drinks formula (Neocate jr chocolate)
Some kids drink ensure or boost
Or peptamen
These when added to food let kids with crohns grow and gain weight easier
Ds is now 5’9” and 160 lbs
Formula is a big part of it

Without it he would not have grown as well or gained the weight he needed to so he can swim /play orchestra/hang out with his friends etc...

 

[my little penguin]

Tagging @Maya142
@Pilgrim @Tesscorm @crohnsinct
@pdx
Other moms with kids who get it

 

[my little penguin]

https://www.improvecarenow.org/growing-up-with-ibd

 

[AdamShoberg]

Adam, I'm so sorry you are going through this and feel alone. This forum is really good and I am glad you found it. My son is 20 now and officially diagnosed last year,however, he probably had crohn's for a few years. He also has arthritis that is a result of the crohn's. He had a couple of bad years. He is doing much better now and is being treated with remicade. I know you said your friends make jokes about your crohn's. That is usually a natural response, especially from teenagers and young adults. They don't know how to react so joking always feels safe. It doesn't mean they are making fun of you. My son makes jokes to his friends as well and his friends probably joke back, but they really are cool with everything.

You are not a burden, remember that. With time, you will be able to navigate through this, and you will find friends that respect you for who you are, not what you have.

We are hear for you if you need to vent or if you aren't feeling well and want advice. You should really tell the friends that you like how you are feeling. You will be surprised at how supportive they can be, or just talking makes all the difference.

Big hug.

Jo-Mom thank you for all your kind words and support. I think you are probably right about talking to my friends about how I feel. But the burden thing, well all kids are a Financial burden to there parents. The estimated cost to raise a kid cost $233,610. But even if you have insurance with a serious medical condition like Crohn's is ridiculously expensive. Therefore I am a bigger financial burden then most. I don't think my parents view me as a burden or anything I just feel like I kind of held them back in life a bit.

https://www.everydayhealth.com/crohns-disease/treatment/managing-crohns-treatment-costs/

 

[AdamShoberg]

I did the same things that you did when I was diagnosed. I can relate to you as I was also 15 when I got diagnosed. I changed a lot don’t think I’ll ever be the same person. I hope Humira works for you because it didn’t for me. let me know if you need advice I’ve learned a lot over the few years I’ve had crohns

Thanks I will

 

[AdamShoberg]

Oh and my kiddo eats food but also drinks formula (Neocate jr chocolate)
Some kids drink ensure or boost
Or peptamen
These when added to food let kids with crohns grow and gain weight easier
Ds is now 5’9” and 160 lbs
Formula is a big part of it

Without it he would not have grown as well or gained the weight he needed to so he can swim /play orchestra/hang out with his friends etc...

I have heard of the drinks and I am happy to hear your son has had success. I will be sure to give them a try

 

[AdamShoberg]

It does get better
My kiddo was dx at age 7 and now is 15
Humira takes time to work but can work great
Ds was on it for over 5 years

Have you looked into camp oasis ?

https://www.crohnscolitisfoundation.org/get-involved/camp-oasis
Summer camp for kiddos woth IBD
They various locations across the US
There are teen groups here
There are teen groups through the improve care now consortium

https://www.improvecarenow.org/toolkits_and_guides
Your Gi should also have teen groups
Talk to your Gi and parents
They can help

It does get better

Ya my doctor gave me some camp brochures and stuff on a teen group, not really my kind of thing. Crohn's is a progressive disease that only gets worse but Maybe life becomes better... thanks to this to this disease I'm going to lose of of the best years.

 

[my little penguin]

You don’t have to lose the best years of your life. As I said my kiddo has had this for close to 9 years and almost the same age as you
Once you get a med that works for you
And some formula
Outside of Gi check ups/bloodwork
Things are good
No one is the wiser
Crohns symptoms over the past years are very low on my kiddos radar
Except an occasional blip here or there

Rethink the camps
Even if your not a camp person
Meeting others who are your age and get the disease
Is very important

 

[my little penguin]

Oh and crohns is not progressive when you are on the right meds
That stops the inflammation
Because of biologics
My kiddos intestine looks pristine
Totally pink and healthy looking
No ulcers
No strictures or anything
This is almost 9 years of disease with 8 being on biologics

 

[AdamShoberg]

Sure I will give some thought into it

 

[Lady Organic]

Hi Adam and welcome to the forum You will find a great community here! Lots of members have been around for years here to support and get support. This forum is truly is great place and I hope you will continue to grace us with you presence and contribution, as you are quite well articulate and sensitive

I was diagnosed at 22 and I understand how you feel right now. The first year or so of disease is usually a rough one. It took two for me. And It can also take time to find and adjust the medication. Hopefully Humira will work for you. It works wonders for me. Ive been on it since last January.
Adaptation to a disease is not easy and the circle of flare and remission in the long run always comes with an new adaptation phase. This circle and adaptation phases has made me a stronger person, no doubt. We sure feel down at moments, but good moments come back and the experience we got out of the disease process is a HUGE life experience. It makes us gain mental strenght and maturity. I am sure it will do the same for you.

Depression and anxiety is very common in IBD patients. I too, attribute my disease to stress (tendency to be a anxious/perfectionnist person) and bad diet. I was a skinny kid and teen and I have eaten soo much junk food without limits in my teens and processed food was on the table on a regular basis. I hate very few homemade meals. I know deep down, that if I had been raised in the amazonian jungle for instance, I wouldnt have this disease! Of course we have to have the genetics for the disease, but several environnemental factors can contribute to its blooming I believe. Physical activity, a well balanced diet and relaxation activities are great options for us that can never hurt. Over the years, I have made some adjusments on my lifestyle. It takes time and adaptation and every patient has his own thinking process and his own receipe for survival! I am sure you will come to find yours. Its a difficult time, but try to keep in mind that better times will be coming. Hope and a positive mind can sure help.

I have never been so close to expressing my feeling to my parents either unfortunately. They say they would like to know more, but I just cant do it, even 20 years later! Family dynamics are not always easy to change but hopefully, if this cant happen with your parents, you will come to find great friends with whom you feel at ease and safe to share. I have had many people at all ages who were very empatic of my condition and very helpful. You will meet some of them thats for sure! At this moment, you may feel you need some time alone, and I understand completly, but try not to isolate yourself too long. Do you still consume cannabis? Do you take the THC version? I worry about the impact this could have on your social involvement. In the long term, it could be a depressor and at your age, its not as safe for the brain to consume it. I'd go for a CBD version preferrably, without the THC, the psychoative part. The people at your school you mention notice a change in you is already a good sign these are caring people. I would suggest you open up to them and try to keep in contact for an active social life. I hope it will work for you The way you express yourself here convinces me on your capacity to express yourself to caring people
Be well my dear and let us know how it goes!
P. s its true liquid diets can help gain weight! I now take a vegan weight gain powder I buy in a health food store and it helped me gain several pounds, a good 10 pound within a month or so. always best to consult your GI though before consuming any new products!

 

[cmack]

My story
Hello, my name is Adam Shoberg, I’m 16 and I live with Crohn’s disease. I was diagnosed last year sometime around March. Living with Crohn’s certainly comes with its challenges but I try not to think all negative.

It all started with weight loss and quickly things got worse. I went from weighing around 120lbs to 99lbs within a 2 month period. Throughout the day I would use the bathroom up to 7 times, and in the night I would be woken up with severe cramps and urges to use the restroom. Sadly at the age of 16 I have little energy from crohns, something all too common with people like me...

I believe my disease has been induced by stress and the garbage foods I consumed(My own ignorance). I also had a very hard time sleeping for months prior to diagnosis, something I have struggled on and off.

After 2-3 months of symptoms I went into see a GI where I was told I needed to have an endoscopy and colonoscopy (very freighting at the time). After the the procedure I was told I had Crohn’s and I was mentally crushed, I hadn’t even heard of the disease until then. When I got home I just cried my eyes out. “why me? What have I done to deserve this?” Were the only things on my mind.

Some challenges I face are weight loss(really hurts my self esteem), nausea, vomiting and diarrhea. The most impactful side effect personally is the mental impact. I have felt overwhelmed with anxiety and depression. I feel like I’m not a normal child anymore, I’m just that sick child that all the relatives feel bad for...

My medications given to me were prednisone(1 month use), and methotrexate (80mg shots). I quickly entered remission but I had a tendency to get nauseas from the methotrexate. They proscribed me a anti nausea that didn’t help at all.

Then something changed for me, a bit of a turn around. With a bit of recreational use I soon started to realize cannabis helped my symptoms, especially the nausea. I eventually on my own free will told my parents about my cannabis use( illegal at the time) which didn’t please them. With lots of talks and discussions I convinced my parents to enroll me in Minnesota’s medical marijuana program and I can proudly say I am a medical marijuana patient. The cannabis helps a lot and I am thankful I live In a state that allows me to get access to my medication I need. I would definitely recommend IBD patients to try cannabis not as there main treatment but more as a therapy when needed.

Good for you Adam,

I'm very glad you got your prescription for MMJ and that it helps you. I agree that it's for calming things when needed. Good post! If you need advice on strains or what type of marijuana that work best for my ailments or others, hit me up with a private discussion. Let's just say I have a lot of experience in the field.

I wish you the best of luck!

 

[cmack]

Thank you for your reply, I really have been feeling desperate and that’s how I got here. Seeing that I had one reply and knowing someone out there cared enough to read my story and write back literally brought me to tears. As for your son I hope and pray for his well being. Has he had Crohn's for awhile now?

I still see my specialist at the children’s hospital, and in August I have my second colonoscopy/endoscopy to make sure I’m in full recovery which is a big yay. As for the methotrexate It just became to much to bare. I just started my first round of humira and I don’t have the Neusa anymore. Sadly I still don’t have the energy I would liked to have seen.

This year I moved schools again for the 3rd time and I lost my ONE friend I felt like I could relate with who suffers from type 1 diabetes, now I have no one. A couple of my “ new friends” know about my crohns and they make jokes thinking it’s all fun and games. I go along with it and act like it’s funny out of embarrassment. I don’t blame them though because all they know is I’m “fine” and that maybe they are cheering me up. In reality it cuts like a knife.

I don’t even really talk to my parents about my crohns and how I truly feel, when they ask I just tell them I’m “great”. Yes I know it’s bad but they have enough on there plate, I am a huge financial burden that’s enough for them to worry about.

Lately I have locked myself away from the world, spending hours apon hours playing computer games. A couple of people I like at my school have said they noticed a change in me, but I don’t let them in to know what’s really going on. I’ve just learned to shut the whole world out. I feel like I, and people who are like me don’t belong on this earth...

I belong on this earth and so do you, otherwise we wouldn't be here... I'll be your friend.

 

[emmaaaargh]

Hi, Adam. Welcome to the forum, but I'm sorry you had to be here.

Like you, I hadn't heard of Crohn's disease at all before I got diagnosed (and the only reason my parents had was because my mum's best friend has it, although hers is very mild). I was diagnosed when I was 9, and I'm now nearly 21 (eeek!).

First of all, I ask you to - please - not believe yourself at fault for any of this. You say you think your disease was brought on by "stress and [...] garbage foods" and it sounds like you're really piling the guilt onto yourself. This will only hurt you. Seriously. For years I worried and wondered and combed through my childhood to see what I could have done, should have done, to prevent my disease... and came up short. Even if I had found something - there's nothing any of us can do about that now. So please please let this feeling go: feeling guilt about your disease will only make the burden that much harder to bear. You did nothing to cause or deserve this, but in all walks of life, bad things happen to good people, and this is one of those things. You can and will continue your life despite this! It will not defeat you.

I really relate to you saying you no longer feel like a normal child, but just that sick child. I was flaring all through my teenage years and it made me miserable. I felt like such an outsider - like I would never get to be normal, like I was wasting what were supposed to be the best and most care-free years of my life. Spoiler: they're not... it's a total lie. You have TONS of time ahead of you to make the best life YOU want to make. Don't do what I did and fall into the trap of moping about how the best times are passing you by - they're not. You need some time to recover, but all the best parts of the world aren't limited by time. They're still out there waiting for you when you're ready for them.

Also, I use videogames as a form of escapism too it helped me feel like I could still get out and explore, even when I was trapped in bed or in the hospital and could barely move anywhere at all. There's an immersion to them that I just can't find on TV!

But in all seriousness, I would advise you to maybe look into therapy to help you adjust. I thought therapy would be totally useless and a waste of time for me, since it had been so long since my diagnosis (I only had a short course of therapy when I was 19), but my therapist helped me to uncover some of the negative thought patterns I had about my illness (that it was all my fault, that I deserved to punish myself whenever my illness stopped me from doing something other people could do, that I would never be as good/achieve as much as healthy people, stuff like that). This is a massive change in your life. Let yourself grieve. But try not to let sorrow for what you've lost become your default mindset. There is still so much you can do, and so much you will be able to do in the future. All hope is not lost.

I hope the Humira proves effective for you! And if there's anything you need, let me - or anyone else here! - know. We're rooting for you!

 

[cmack]

I totally agree, Emma!

This young lady has some very wise words, Adam. I don't think anyone could have put it any better. We're truly here for you bro!

 

[Tesscorm]

Hey Adam, I'm really glad you found this forum! My son was diagnosed when he was 16. And, while I don't have crohns, this forum was great in helping me learn how to manage my son's illness and accepting the changes to our lives!

But, having said that... the changes WERE manageable, once your treatment really kicks in!

As MLP said, crohns is not a 'progressive' illness if you are on the right treatment. And, by 'right', I only mean that what works for one person, may not work the same for another... some meds take a while to reach therapeutic levels and, then, healing can then take some time. So, don't be discouraged if you're not feeling the energy you expected since starting humira. Give it a bit of time.

I'm also on the nutritional shakes bandwagon!! My son also lost tons of weight when he was diagnosed. Once he started treatment and it began to kick in, he did gain the weight back but, one thing that definitely helped were the shakes he drank. He swore that the protein he was getting from them helped him build muscle more quickly than his friends when they went to the gym. He does play sports but isn't into 'body building', so I'm not talking about any kind of intense gym workout. The shakes do provide protein and lots of other vitamins and minerals. I don't know if they really help with the muscle building but they will definitely help get you to a healthier state. Getting all the necessary nutrients will help your body recover and will help get back your energy.

In my son's case, nutritional formula's were part of his treatment. He used an NG (naso-gastric) tube to ingest the nutritional formula overnight and would remove the tube each morning. He did this until he went away to university. By then, he'd started on remicade (similar to humira) and he didn't want to take the formulas, tubes, pump, etc. to university. As he was stable on the remicade, by this point, the nutritional formula was mainly to just boost his nutrition. He started just drinking the chocolate Boost 2-3 times per day. He had one each morning and the other 1-2 shakes were snacks and/or when he was in a rush and just needed something quick.

As far as being the 'sick child', when my son was initially diagnosed, yes, relatives did treat and/or think of him in that way but, as time passed and he was well, I know most people don't even think about it now. The first year after diagnosis is the toughest... you're learning and finding your way around the illness, you're still recovering so not yet feeling 100% and you worry that you'll always feel this way, sometimes there's some backtracking if you need to add or changes meds but, as time passes, you'll begin to feel better and you'll figure out what changes you need to make to your lifestyle. Give yourself a year to really get a grasp on what's going on and don't put to much pressure on yourself (physical or emotional)... by then, as you heal physically and crohns begins to not be such a consuming part of your life, you'll feel better emotionally too.

I think it helps to get answers to questions you have... never hesitate to come here to ask... and it helps to speak to people who 'get it'.

Hugs!!

 

[AdamShoberg]

Good for you Adam,

I'm very glad you got your prescription for MMJ and that it helps you. I agree that it's for calming things when needed. Good post! If you need advice on strains or what type of marijuana that work best for my ailments or others, hit me up with a private discussion. Let's just say I have a lot of experience in the field.

I wish you the best of luck!

Thanks

Hi Adam and welcome to the forum You will find a great community here! Lots of members have been around for years here to support and get support. This forum is truly is great place and I hope you will continue to grace us with you presence and contribution, as you are quite well articulate and sensitive

I was diagnosed at 22 and I understand how you feel right now. The first year or so of disease is usually a rough one. It took two for me. And It can also take time to find and adjust the medication. Hopefully Humira will work for you. It works wonders for me. Ive been on it since last January.
Adaptation to a disease is not easy and the circle of flare and remission in the long run always comes with an new adaptation phase. This circle and adaptation phases has made me a stronger person, no doubt. We sure feel down at moments, but good moments come back and the experience we got out of the disease process is a HUGE life experience. It makes us gain mental strenght and maturity. I am sure it will do the same for you.

Depression and anxiety is very common in IBD patients. I too, attribute my disease to stress (tendency to be a anxious/perfectionnist person) and bad diet. I was a skinny kid and teen and I have eaten soo much junk food without limits in my teens and processed food was on the table on a regular basis. I hate very few homemade meals. I know deep down, that if I had been raised in the amazonian jungle for instance, I wouldnt have this disease! Of course we have to have the genetics for the disease, but several environnemental factors can contribute to its blooming I believe. Physical activity, a well balanced diet and relaxation activities are great options for us that can never hurt. Over the years, I have made some adjusments on my lifestyle. It takes time and adaptation and every patient has his own thinking process and his own receipe for survival! I am sure you will come to find yours. Its a difficult time, but try to keep in mind that better times will be coming. Hope and a positive mind can sure help.

I have never been so close to expressing my feeling to my parents either unfortunately. They say they would like to know more, but I just cant do it, even 20 years later! Family dynamics are not always easy to change but hopefully, if this cant happen with your parents, you will come to find great friends with whom you feel at ease and safe to share. I have had many people at all ages who were very empatic of my condition and very helpful. You will meet some of them thats for sure! At this moment, you may feel you need some time alone, and I understand completly, but try not to isolate yourself too long. Do you still consume cannabis? Do you take the THC version? I worry about the impact this could have on your social involvement. In the long term, it could be a depressor and at your age, its not as safe for the brain to consume it. I'd go for a CBD version preferrably, without the THC, the psychoative part. The people at your school you mention notice a change in you is already a good sign these are caring people. I would suggest you open up to them and try to keep in contact for an active social life. I hope it will work for you The way you express yourself here convinces me on your capacity to express yourself to caring people
Be well my dear and let us know how it goes!
P. s its true liquid diets can help gain weight! I now take a vegan weight gain powder I buy in a health food store and it helped me gain several pounds, a good 10 pound within a month or so. always best to consult your GI though before consuming any new products!

Hi Adam and welcome to the forum You will find a great community here! Lots of members have been around for years here to support and get support. This forum is truly is great place and I hope you will continue to grace us with you presence and contribution, as you are quite well articulate and sensitive

I was diagnosed at 22 and I understand how you feel right now. The first year or so of disease is usually a rough one. It took two for me. And It can also take time to find and adjust the medication. Hopefully Humira will work for you. It works wonders for me. Ive been on it since last January.
Adaptation to a disease is not easy and the circle of flare and remission in the long run always comes with an new adaptation phase. This circle and adaptation phases has made me a stronger person, no doubt. We sure feel down at moments, but good moments come back and the experience we got out of the disease process is a HUGE life experience. It makes us gain mental strenght and maturity. I am sure it will do the same for you.

Depression and anxiety is very common in IBD patients. I too, attribute my disease to stress (tendency to be a anxious/perfectionnist person) and bad diet. I was a skinny kid and teen and I have eaten soo much junk food without limits in my teens and processed food was on the table on a regular basis. I hate very few homemade meals. I know deep down, that if I had been raised in the amazonian jungle for instance, I wouldnt have this disease! Of course we have to have the genetics for the disease, but several environnemental factors can contribute to its blooming I believe. Physical activity, a well balanced diet and relaxation activities are great options for us that can never hurt. Over the years, I have made some adjusments on my lifestyle. It takes time and adaptation and every patient has his own thinking process and his own receipe for survival! I am sure you will come to find yours. Its a difficult time, but try to keep in mind that better times will be coming. Hope and a positive mind can sure help.

I have never been so close to expressing my feeling to my parents either unfortunately. They say they would like to know more, but I just cant do it, even 20 years later! Family dynamics are not always easy to change but hopefully, if this cant happen with your parents, you will come to find great friends with whom you feel at ease and safe to share. I have had many people at all ages who were very empatic of my condition and very helpful. You will meet some of them thats for sure! At this moment, you may feel you need some time alone, and I understand completly, but try not to isolate yourself too long. Do you still consume cannabis? Do you take the THC version? I worry about the impact this could have on your social involvement. In the long term, it could be a depressor and at your age, its not as safe for the brain to consume it. I'd go for a CBD version preferrably, without the THC, the psychoative part. The people at your school you mention notice a change in you is already a good sign these are caring people. I would suggest you open up to them and try to keep in contact for an active social life. I hope it will work for you The way you express yourself here convinces me on your capacity to express yourself to caring people
Be well my dear and let us know how it goes!
P. s its true liquid diets can help gain weight! I now take a vegan weight gain powder I buy in a health food store and it helped me gain several pounds, a good 10 pound within a month or so. always best to consult your GI though before consuming any new products!

Thank you organic for your kind words and advice.

I do still use cannabis and I prefer the THC version, I have tried there CBD pills and oils that my state offers. To be real honest I didn't get much relief and they were sometimes double the cost of the THC vapes. And just being able to go from bad stomach pains to feeling pretty normal is amazing. I do see your concern with the brain development, but lets real some of the side effects for the Crohns medicine are even scarier.

Im am very glad to hear about your success with a liquid base diet and I am currently starting to try ensures. I hope and pray that you maintain good health.

 

[AdamShoberg]

Hi, Adam. Welcome to the forum, but I'm sorry you had to be here.

Like you, I hadn't heard of Crohn's disease at all before I got diagnosed (and the only reason my parents had was because my mum's best friend has it, although hers is very mild). I was diagnosed when I was 9, and I'm now nearly 21 (eeek!).

First of all, I ask you to - please - not believe yourself at fault for any of this. You say you think your disease was brought on by "stress and [...] garbage foods" and it sounds like you're really piling the guilt onto yourself. This will only hurt you. Seriously. For years I worried and wondered and combed through my childhood to see what I could have done, should have done, to prevent my disease... and came up short. Even if I had found something - there's nothing any of us can do about that now. So please please let this feeling go: feeling guilt about your disease will only make the burden that much harder to bear. You did nothing to cause or deserve this, but in all walks of life, bad things happen to good people, and this is one of those things. You can and will continue your life despite this! It will not defeat you.

I really relate to you saying you no longer feel like a normal child, but just that sick child. I was flaring all through my teenage years and it made me miserable. I felt like such an outsider - like I would never get to be normal, like I was wasting what were supposed to be the best and most care-free years of my life. Spoiler: they're not... it's a total lie. You have TONS of time ahead of you to make the best life YOU want to make. Don't do what I did and fall into the trap of moping about how the best times are passing you by - they're not. You need some time to recover, but all the best parts of the world aren't limited by time. They're still out there waiting for you when you're ready for them.

Also, I use videogames as a form of escapism too it helped me feel like I could still get out and explore, even when I was trapped in bed or in the hospital and could barely move anywhere at all. There's an immersion to them that I just can't find on TV!

But in all seriousness, I would advise you to maybe look into therapy to help you adjust. I thought therapy would be totally useless and a waste of time for me, since it had been so long since my diagnosis (I only had a short course of therapy when I was 19), but my therapist helped me to uncover some of the negative thought patterns I had about my illness (that it was all my fault, that I deserved to punish myself whenever my illness stopped me from doing something other people could do, that I would never be as good/achieve as much as healthy people, stuff like that). This is a massive change in your life. Let yourself grieve. But try not to let sorrow for what you've lost become your default mindset. There is still so much you can do, and so much you will be able to do in the future. All hope is not lost.

I hope the Humira proves effective for you! And if there's anything you need, let me - or anyone else here! - know. We're rooting for you!

Emma thank you very much for sharing a bit of your story with me. I am glad to hear that a therapist helped you. I have had therapist in earlier years in life and I can say I never rrly found much relief in them. Who knows I may rethink things. I really try hard to not let the dark thoughts no become my default but there is always something on my mind that may get me down. I hope I can find better methods of fighting this but for now it has become a daily struggle. With time I hope I heal

 

[AdamShoberg]

Hey Adam, I'm really glad you found this forum! My son was diagnosed when he was 16. And, while I don't have crohns, this forum was great in helping me learn how to manage my son's illness and accepting the changes to our lives!

But, having said that... the changes WERE manageable, once your treatment really kicks in!

As MLP said, crohns is not a 'progressive' illness if you are on the right treatment. And, by 'right', I only mean that what works for one person, may not work the same for another... some meds take a while to reach therapeutic levels and, then, healing can then take some time. So, don't be discouraged if you're not feeling the energy you expected since starting humira. Give it a bit of time.

I'm also on the nutritional shakes bandwagon!! My son also lost tons of weight when he was diagnosed. Once he started treatment and it began to kick in, he did gain the weight back but, one thing that definitely helped were the shakes he drank. He swore that the protein he was getting from them helped him build muscle more quickly than his friends when they went to the gym. He does play sports but isn't into 'body building', so I'm not talking about any kind of intense gym workout. The shakes do provide protein and lots of other vitamins and minerals. I don't know if they really help with the muscle building but they will definitely help get you to a healthier state. Getting all the necessary nutrients will help your body recover and will help get back your energy.

In my son's case, nutritional formula's were part of his treatment. He used an NG (naso-gastric) tube to ingest the nutritional formula overnight and would remove the tube each morning. He did this until he went away to university. By then, he'd started on remicade (similar to humira) and he didn't want to take the formulas, tubes, pump, etc. to university. As he was stable on the remicade, by this point, the nutritional formula was mainly to just boost his nutrition. He started just drinking the chocolate Boost 2-3 times per day. He had one each morning and the other 1-2 shakes were snacks and/or when he was in a rush and just needed something quick.

As far as being the 'sick child', when my son was initially diagnosed, yes, relatives did treat and/or think of him in that way but, as time passed and he was well, I know most people don't even think about it now. The first year after diagnosis is the toughest... you're learning and finding your way around the illness, you're still recovering so not yet feeling 100% and you worry that you'll always feel this way, sometimes there's some backtracking if you need to add or changes meds but, as time passes, you'll begin to feel better and you'll figure out what changes you need to make to your lifestyle. Give yourself a year to really get a grasp on what's going on and don't put to much pressure on yourself (physical or emotional)... by then, as you heal physically and crohns begins to not be such a consuming part of your life, you'll feel better emotionally too.

I think it helps to get answers to questions you have... never hesitate to come here to ask... and it helps to speak to people who 'get it'.

Hugs!!
[/QUOTE
Hey Tess good to know there are people other then patients that here to help. I just started drinking nutritional shakes and I hope I have the success your son has had. This is the first time I have heard of someone doing the NG to consume the formula. I will be sure to come back when I have more questions. Much love to you all

 

[Maya142]

Hi Adam,
I have a daughter who was diagnosed with Crohn's at 16. She was put on Remicade and Methotrexate, but like you, she struggled with nausea and vomiting with MTX, so had to stop it. However, 8 months after diagnosis and starting Remicade, she had scopes again and all the ulcers in her colon had healed and her colon looked perfect! Her small bowel still had some mild inflammation, but a huge improvement from diagnosis.
So Crohn's does not have to be progressive. You can go into remission and stay there, with the right meds.

She was severely underweight and tried drinking formula. She wasn't able to drink enough to maintain her weight, much less gain, so eventually we went to a feeding tube (an NG or naso-gastric tube). She would insert the tube at night, and start the pump and it would run the feed while she was sleeping, so she was able to get enough formula to gain weight. In the morning, she'd pull the tube out. That way, no one at school had to know.
The tube got her to a healthy weight and she started feeling a whole lot better once she was getting enough calories and nutrients - she had much more energy and just felt SO much better.

Like other parents have said, I would really encourage you to give Camp Oasis a try - it helped my daughter a LOT to meet other kids with the same chronic illnesses that she had (she has juvenile idiopathic arthritis as well as Crohn's Disease, and several other conditions). Your hospital may also have a support group for teens with IBD - ours does. It really helps to meet kids who really "get it" - they understand all the challenges that come with IBD - the embarrassment of having diarrhea or accidents, having to change your diet or having to miss school for medical stuff.

I would also encourage you to give therapy a try. Your GI will probably have a psychologist he/she can refer you too, who specializes in kids dealing with chronic illnesses. Being a teen is hard enough and adding a chronic illness makes it even harder. A psychologist can help you cope with all that is happening. My daughter was VERY against seeing a psychologist and resisted it for months - she's shy and didn't like talking about her illnesses. Thankfully, her GI absolutely insisted and finally, she agreed.

It took a while for her to get used to her psychologist, but once she did, it made a world of difference. She now reminds me to make appointments for her and once said "Mom, why I didn't you make me see a psychologist sooner?!"

She is 22 now and in college. Her Crohn's is in remission and she says she doesn't think about every day or even every week. You will get to that place - it just takes time to find the right combination of medications, formula etc. to control the disease.

Hang in there!!

 

[Maya142]

Oh and I wanted to add - my daughter also uses medical marijuana. In her case, she uses it for severe joint pain and not really her Crohn's symptoms. Her pain management doctor did not allow her to vape - he said that it can cause inflammation (yes, even vaping not just smoking) and since she has more than enough inflammation in her gut/joints, he preferred other formulations. She uses a tincture which goes under your tongue or a powder that is dissolved in a drink.

She has found a 2:1 CBD:THC formulation helps her with pain and sleep. She can't take it during the day though, because it makes her feel a little "loopy" or "out of it." She also uses a 20:1 CBD:THC formulation and that she can use during the day. It does help with nausea related to Crohn's and with her appetite.

We did wait till she was 21 before using medical marijuana. It is true that it impacts brain development and so we did not want her on it as a teenager and she also did not want to use it as a teenager, if possible, based on the studies we read. Your brain is still developing till you are 25 or 26, which is why we were wary. However, at 21, she decided the benefits outweighed the risks (because she was on other, riskier drugs for pain) and decided to try it.

She does feel that the 2:1 formulation impacts her cognitively and she finds it hard to remember things and focus on school work if she takes it during the day. She feels like it has definitely affected her memory. So she tries to take it only at night.

You should discuss the risks and benefits with your doctor. Are you using it mostly for pain? Or nausea? Or to relax?
Because for pain, a high CBD strain with some THC is usually what is recommended and honestly, a lower amount of THC is probably best for developing brains.

 

[cmack]

I agree with you Maya. THC has been shown to cause issues with the, "hard wiring" of developing brains. There is a growing body of scientific evidence to show this. I believe it to be purely dose related. That's my opinion and nothing more. Here is one link - https://www.drugabuse.gov/publicati...a/what-are-marijuanas-long-term-effects-brain I knew a lot of people who smoked pot in high school and most of them turned out okay. Could they have been better without the pot is hard to say. I think it's best to err on the side of caution and take the smallest dose, (with THC and CBD) needed to alleviate your symptoms. Too much of any drug is bound to cause trouble somewhere. Adam does have a good point though when he said that some of the other meds are pretty scary too. The cost/availability of CBD oils or extracts can be very prohibitive as well. Anything that's needed, in moderation and necessity is how I roll.