trying my best

[user 447597]

I don't know how long this is going to end up being but if anyone gets through this, thank you.

It hasn't been long that I've been aware of Crohn's and finding this forum randomly made me realize how I am not alone, even though my life is very lonely. I feel very alone in my thoughts and my life so I'd like to write about it here. Maybe for some advice or to help someone else out.

A little context outside of Crohn's:
I'm a 19 year old guy. I have had psoriasis since I was a baby, and was diagnosed with childhood psoriatic arthritis. I also deal with a pain disorder. I have dealt with severe fatigue since I was in 7th grade or so, related to my arthritis and pain disorder for the most part. Also, I was diagnosed with depression when I started middle school, real fun times lol.

I think my story with Crohn's started a few years ago, when I was maybe 15 or so years old. The first time I really remember understanding that things were wrong/different were when my parents made me take the week long trip to take my sibling to college. It was really hard because I constantly felt like I had to go to the bathroom and my stomach hurt all of the time... when I got to the bathroom, though, a lot of times nothing would happen. My parents got really annoyed with me at the time, and this was right after I had surgery on my hand too (just got my cast off if I remember correctly).

In a way, my symptoms haven't changed much, years and years in, so I got used to the hell. I also was on Enbrel throughout all of this, as a note, for my psoriatic arthritis. This meant I was a bit immunocompromised, a bit more isolated, and when the pandemic started... well, things got harder. Then, I started college.

My fatigue was really bad already, but... it wasn't long after I was 18, and started college, that there started to be blood in my stools, and somehow, my fatigue was getting even worse. I spent dedicated time trying to alter my diet, looking up suggestions; I thought it would go away but it didn't, months went by, and this is when I realized I couldn't ignore it; blood from your stool for months, difficulty functioning at all, my depression worsening...

And I went into the appointment thinking, "well as long as I don't have to get an endoscopy I'll be fine." Guess what the first thing my doctor wanted was, lol. It was a really scary experience for me, with a lot of anxiety and horrible emotions. I went off Enbrel after talking with my Rheumatologist because he wanted to hear what the results of it would be.

Right after the procedure, she said she thought it looked like Crohn's. I started Budesonide after, from what I understand I will be taking it for 3 months. I am about 1 ½ months in. There's no more bleeding, luckily, but the cramping, the frequent urination, just constant pain... and Budesonide is still somewhat immunocompromising, from what I understand. Which means I'm still very lonely.

I am really scared of getting sick, because I wouldn't be able to stay on campus. But... well, let's just say it brings tears to my eyes to say how caring the parents on here are. My relationship with my parents is complicated. Living on campus year round has been life saving for me. But at the same time, I have no support outside of my therapist (who i see online) online friends (whom I don't feel comfortable talking about this with).

Right now... My gastro asked for me to get an MR enterology, so I'm getting that next week, and I'm pretty nervous. I had to get a lot of MRI's related to my pain disorder and it was kind of traumatizing, and i don't really understand what an MR enterology is fully. I also have to see my mom so she can take me which I'm kind of nervous about, but no place that does this procedure is accessible via public transport...

This is where I'm at. I'm really scared and really lonely, maybe things can get better, but i'm sitting here wondering how I'm going to get through another semester like this. Another month like this. I feel like I have nothing left to give to the world even though there is so much in my heart. Every smile i put on my face doesn't feel honest, and when I call my friends, every few minutes, "i have to go to the bathroom, i have to go to the bathroom", I'm sick of hearing myself say that. I don't think I could achieve the dreams I have like this. But maybe the Budesonide will just fix things, I still have many weeks left, and the bleeding is better so, who knows. I sure don't.

Thanks for anyone who skimmed/read this. have you been on budesonide? gotten an MR enterology?

(P.S. I have struggled with disordered eating + self-image issues for a long time, so I would appreciate it if you took that into consideration if you mention diet or anything of the sort)

-Mars

 

[my little penguin]

Welcome
Going to tag some Parents of “adult children “ on here
@Maya142 @crohnsinct @Tesscorm
@pdx

my kiddo is 18 now
Dx at age 7 with crohns
Juvenile arthritis at age 10
He is on Stelara plus methotrexate plus Celebrex
To treat crohns and arthritis

Buesonide is a steriod for the gut
So they are using that to reduce inflammation while they wait for the MRI entography results
Buesonide is not a long term maintenance med

Miri with entography (MRE) is where you drink
Something like breeza
https://beekley.com/breeza-flavored-beverages/breeza-for-neutral-abdominal-imagingTwo or three of those
Wait
Then they give an iv
Do imaging typically laying on your stomach with your arms over your head (but each place is different so it might be laying on your back )
Then half way through the imaging
They stop and give two to three meds in the iv
This stops your intestines briefly so they get better imaging
Whole thing takes about an hour or so

glad you have a therapist to talk things through with

as far as immunocompromised
For my young adult
We follow the same rules we did prior to pandemic
Vaccines for COVID /flu
Masks if in public
Wash hands
Enjoy your friends
He entered a study on COVID /ibd two years ago
So far they found as long as they get all the vaccines
No higher risk when taking most ibd biologics
So that good thing

hopefully they will get you on a biologic (such as remicade or humira ) which treats crohns and arthritis so you have less pain

good luck

 

[user 447597]

Thank you for replying for fast, this makes me feel a lot better about going into this procedure!

 

[Jo-mom]

Hi, my son was about your age when he was diagnosed with Crohn's. He was in pretty bad shape. As well, he has arthritis and felt different than his friends for a very long time. Once he was diagnosed properly and put on the proper medication, things went uphill. I had to drive him as close as possible to his university classes as it was challenging for him to walk to them. After the proper medication, he started becoming stronger and gained weight and was living "normally". What a difference! Things will get better for you. And you are definitely not alone.

 

[Pangolin]

Crohn's is often not an easy thing to get under control. You're new to this, and it's going to take a while to figure it all out. I remember being 19 and having absolutely no clue about how to deal with the medical system. Fortunately you can ask questions here even if you don't have anyone irl.

As My Little Penguin said, the MRE should be pretty easy.

Budesonide is a steroid that's generally used short-term to improve symptoms. Unfortunately, it's not going to make the Crohn's better long-term. However, there are a number of options that people do use long-term that really help them. Mostly these are "biologics" that are injected or infused every 2 to 8 weeks. Humira is usually the first one they try these days, and then there are others that can be very effective even if Humira doesn't work.

The only diet option with high efficacy is Exclusive Enteral Nutrition, or EEN. EEN involves drinking only nutritional shakes and no other food, so it's pretty extreme. It is very helpful, especially at this point when you're just starting to treat this. I would highly recommend trying it and seeing if it works for you. You might even be able to get all of the formula for free if you go through your doctor.

As you probably know, Crohn's is all about inflammation in the intestines. You're going to want to get a good idea of how much inflammation you have and where it is, and that's where tests like the MRE come in. It will be important to regularly monitor tests of inflammation such as ESR, CRP, and fecal calprotectin to make sure that whatever treatments you're using are helping.

It *is* possible to get this totally under control and to feel great again, but it's important for you to be proactive as a patient to make sure that happens.

 

[user 447597]

Hi, my son was about your age when he was diagnosed with Crohn's. He was in pretty bad shape. As well, he has arthritis and felt different than his friends for a very long time. Once he was diagnosed properly and put on the proper medication, things went uphill. I had to drive him as close as possible to his university classes as it was challenging for him to walk to them. After the proper medication, he started becoming stronger and gained weight and was living "normally". What a difference! Things will get better for you. And you are definitely not alone.

Thank you very much for the kind words, hearing this is definitely uplifting

Crohn's is often not an easy thing to get under control. You're new to this, and it's going to take a while to figure it all out. I remember being 19 and having absolutely no clue about how to deal with the medical system. Fortunately you can ask questions here even if you don't have anyone irl.

As My Little Penguin said, the MRE should be pretty easy.

Budesonide is a steroid that's generally used short-term to improve symptoms. Unfortunately, it's not going to make the Crohn's better long-term. However, there are a number of options that people do use long-term that really help them. Mostly these are "biologics" that are injected or infused every 2 to 8 weeks. Humira is usually the first one they try these days, and then there are others that can be very effective even if Humira doesn't work.

The only diet option with high efficacy is Exclusive Enteral Nutrition, or EEN. EEN involves drinking only nutritional shakes and no other food, so it's pretty extreme. It is very helpful, especially at this point when you're just starting to treat this. I would highly recommend trying it and seeing if it works for you. You might even be able to get all of the formula for free if you go through your doctor.

As you probably know, Crohn's is all about inflammation in the intestines. You're going to want to get a good idea of how much inflammation you have and where it is, and that's where tests like the MRE come in. It will be important to regularly monitor tests of inflammation such as ESR, CRP, and fecal calprotectin to make sure that whatever treatments you're using are helping.

It *is* possible to get this totally under control and to feel great again, but it's important for you to be proactive as a patient to make sure that happens.

- I'm pretty hesitant to go on another biologic, since I was on Enbrel from about age 15-18, and that was a very exhausting process for me and difficult to figure out going into college. But I know Humira is the go-to for this kind of thing, so I will have to temper my expectations of not going on it or something similar, lol

- I'm trying my best to be proactive, yeah. I've been doing this whole process on my own so it can be hard at times but reaching out to others has helped me. Hopefully the MRE results + continuing Budesonide will provide me with a good idea of what to do next


Thank you all!

 

[Tesscorm]

Hi Mars,

I'm so sorry you've had so many challenges! But, hopefully, once the MRE results come in, you can be put on the right path to recovery!

My son was 16 when he was diagnosed with crohns. (He's now 28.) He's been on remicade for about 10 years. This has kept him in remission! Yahoo! He does deal with odd infections, weird 'things' that no one figures out but, while they are annoying, they are manageable and have not had an impact on his life.

Re humira vs remicade... I do believe humira is the more convenient... you can give yourself injections at home and takes just a few minutes. Remicade is done by infusion, so it means a visit to the clinic each time and about a 2-3 hour stay at the clinic. Humira is usually a weekly or bi-weekly injection, remicade is usually every 6-8 weeks. I believe humira is a bit painful (although there are new formulations which are less painful), remicade is not painful (just like a blood test type jab). With humira, you will need to get to a lab periodically for bloodwork, with remicade they do it at the same time as the infusion. Pros and cons for each. Do put some thought into it though, once you make the decision, you'll want to stick with it. Switching meds due to 'inconvenience' is not done as you are likely to build antibodies to the drug you stop and it will no longer be available as an option for you.

MLP mentioned EEN (exclusive enteral nutrition) - this is a diet followed to induce remission and means that you would drink ONLY nutritional shakes, providing your body with nutrition while giving your intestines time to heal (usually 6 weeks). However, it's not an easy treatment and there's more to it than just that... it's something that would need to be discussed with your doctor. It's what my son did to induce remission. But, I'm really bringing it up for a different reason. Partial or supplemental EN is eating food but using the nutritional shakes as a supplement. Once my son finished the exclusive period and reintroduced foods, he continued with 1-3 shakes daily (for years, still has them fairly regularly now) to supplement his nutrition. While away at school, he would replace his breakfast with a shake (healthier than a fast food breakfast sandwich) and would have another shake as a snack between classes. If you're feeling fatigued, perhaps the boost of nutrition would help?? Just something to consider. If you want more info on this, just ask - many of the members here have used EN. Of course, inflammation also hinders absorption of nutrients... once you are on the right meds, your fatigue may disappear on it's own.

I'm glad you have a therapist to speak with! It does help to have someone who listens and understands. I'm not sure how much time/energy you have but, perhaps look to join clubs which interest you?? Or, if you're near a Crohns & Colitis Foundation, perhaps you can volunteer and meet other who would understand your struggles.

As well... there are lots of amazing members here, feel free to come and vent or ask questions at any time! ❤

 

[Maya142]

Hi Mars.
I have two daughters with juvenile arthritis and my younger one also has Crohn's. Both girls were diagnosed with arthritis (one at 12 and one at 14l) and both have dealt with depression and anxiety. Seeing a therapist is an excellent idea and I'm so glad you are seeing one regularly. My younger daughter was diagnosed with Crohn's at 16. Her arthritis is also very severe (she has already two joints replaced and many surgeries), so she has struggled more than my older daughter. BUT, she got through middle school, high school and college and did very well!

In terms of Crohn's, being on a biologic could actually really change your life. It did for both my girls. I was very hesitant to put them on biologics but when they started Humira, they both went from being in a lot of pain and miserable to being normal kids. My younger daughter was actually also diagnosed with Crohn's while on Enbrel - I think she had Crohn's from when she was 11-12 but I think Humira treated it though she was taking it for her arthritis. However, when Humira failed, she tried Enbrel and that's when her GI symptoms came back and she had an endoscopy and was diagnosed. Once she was taken off Enbrel and put on Remicade, she felt a whole lot better.

So most doctors will start with either Remicade or Humira if you have both Crohn's and psoriatic arthritis, since they will treat both. As mentioned above, Humira is an injection every 2 weeks. It used to be very painful but it has been reformulated without a preservative (which was what made it burn), so if you see old posts referring to burning pain with Humira, just know that it's NOT a painful injection anymore. It can be given with an auto-injector or a syringe, depending on what you prefer. With Enbrel, did you do your own shots? Was it hard for you (if you did them)? Because it is possible to arrange for a nurse at the health center at your college to do them if you find you get anxious doing them yourself. Some people have a hard time giving themselves shots and that's absolutely ok. My husband also has autoimmune arthritis and he absolutely will not give himself shots - I have to do them. But my girls learned to them by themselves when they were 13 and 15 and actually found that they preferred doing them themselves - they had more control that way.

Remicade is another good option and in that case, you would go to a hospital or infusion center every 4-8 weeks. Some kids/teens/young adults really prefer Remicade because you don't have to think about meds often and nurses do all the work. It's an IV, so it is a poke, but some kids really prefer IVs to injections. It's about 2 hours for the infusion plus another hour or two to get the IV, get the medication sent from the pharmacy, to do a saline flush etc. You can even have "home infusions" where your nurse will come to your dorm room or home. Some college students prefer that because it saves time. My girls quite liked Remicade infusions (my younger one is on Remicade now) - they usually napped or watched TV or did homework.

I think the main thing to remember is that there are VERY effective treatments for both psoriatic arthritis and Crohn's that can really change your quality of life. You shouldn't be afraid of them. Why was Enbrel hard for you? If you can tell us why, perhaps we can help. Did it not control your arthritis? How is your arthritis now?

In terms of Budesonide, it's a steroid that is not used for the long-term, but it really does help in the short term and my daughter got a lot of relief from it too. But you need what is called a maintenance med, and honestly biologics like Remicade or Humira have fewer side effects than immunosuppressants like MTX and 6MP/Imuran.

In terms of being immunosuppressed and in college with COVID going around, I would first make sure you are vaccinated and up to date with boosters. And besides that, you can wear a mask in classes when there are high levels of infection/lots of cases on campus. My older daughter is in graduate school and that is what she does. Besides that, she lives very normally, like other grad students, on campus. And both my daughters have had COVID while on biologics and while it's not fun, thankfully it was relatively mild and went away within 10 days. Both were given Paxlovid by their doctors since they are immunocompromised and that made a HUGE difference.

Do reach out if you have any questions. Feel free to PM me if you have any questions relating to arthritis or pain disorders (my younger daughter has really struggled with a pain disorder too, but she finds exercising and staying busy help her a lot). And please remember that this is the worst phase of the disease - when you're just diagnosed and flaring. Once you're on a medication or a combination of meds that works, you'll be able to live your life.

 

[Maya142]

I wanted to add, about feeling alone, have you considered joining a support group? Sometimes there are support groups available on campus for students with chronic illnesses. Also, you could volunteer at the Arthritis Foundation camps, as a camp counselor in the summer - the other counselors are typically young adults who have juvenile arthritis or some form of arthritis.

Or there is a Juvenile Arthritis Conference, which is 4 days (over a weekend in the summer) and there is a special young adult program where you'll meet other young adults with juvenile arthritis (some will definitely have psoriatic arthritis, others will have polyarticular, oligoarticular, enthesitis related arthritis or systemic arthritis or other rheumatic issues. And some will have Crohn's too), you'll learn about your disease and how to manage it, you'll do fun activities together etc. It can REALLY help you feel less alone - my daughters loved it (and my younger one wants to go next summer too). They keep in touch with friends they made there online.

Your parents can attend too and go to the parent informational sessions or the "networking sessions" where they'll meet other parents (and often they'll group people by state, so you can meet other parents in your area) and they'll learn more about your disease. That can really help your relationship - if they understand what you're going through. Or of course, you can go without them.

 

[user 447597]

Hi Mars,

I'm so sorry you've had so many challenges! But, hopefully, once the MRE results come in, you can be put on the right path to recovery!

My son was 16 when he was diagnosed with crohns. (He's now 28.) He's been on remicade for about 10 years. This has kept him in remission! Yahoo! He does deal with odd infections, weird 'things' that no one figures out but, while they are annoying, they are manageable and have not had an impact on his life.

Re humira vs remicade... I do believe humira is the more convenient... you can give yourself injections at home and takes just a few minutes. Remicade is done by infusion, so it means a visit to the clinic each time and about a 2-3 hour stay at the clinic. Humira is usually a weekly or bi-weekly injection, remicade is usually every 6-8 weeks. I believe humira is a bit painful (although there are new formulations which are less painful), remicade is not painful (just like a blood test type jab). With humira, you will need to get to a lab periodically for bloodwork, with remicade they do it at the same time as the infusion. Pros and cons for each. Do put some thought into it though, once you make the decision, you'll want to stick with it. Switching meds due to 'inconvenience' is not done as you are likely to build antibodies to the drug you stop and it will no longer be available as an option for you.

MLP mentioned EEN (exclusive enteral nutrition) - this is a diet followed to induce remission and means that you would drink ONLY nutritional shakes, providing your body with nutrition while giving your intestines time to heal (usually 6 weeks). However, it's not an easy treatment and there's more to it than just that... it's something that would need to be discussed with your doctor. It's what my son did to induce remission. But, I'm really bringing it up for a different reason. Partial or supplemental EN is eating food but using the nutritional shakes as a supplement. Once my son finished the exclusive period and reintroduced foods, he continued with 1-3 shakes daily (for years, still has them fairly regularly now) to supplement his nutrition. While away at school, he would replace his breakfast with a shake (healthier than a fast food breakfast sandwich) and would have another shake as a snack between classes. If you're feeling fatigued, perhaps the boost of nutrition would help?? Just something to consider. If you want more info on this, just ask - many of the members here have used EN. Of course, inflammation also hinders absorption of nutrients... once you are on the right meds, your fatigue may disappear on it's own.

I'm glad you have a therapist to speak with! It does help to have someone who listens and understands. I'm not sure how much time/energy you have but, perhaps look to join clubs which interest you?? Or, if you're near a Crohns & Colitis Foundation, perhaps you can volunteer and meet other who would understand your struggles.

As well... there are lots of amazing members here, feel free to come and vent or ask questions at any time! ❤

Thank you very much for your insight and message!!! It means a lot. I have been finding that drinking things like gatorade or shakes can help my fatigue, particularly if I feel like it was influenced by my Crohn's more than anything else... As hestiatnt as I am about it, I will talk to my gastro about EN after my MRE though, it may be something to rlly consider. And I have had to get over a lot of my fears over the years, lol.

Hi Mars.
I have two daughters with juvenile arthritis and my younger one also has Crohn's. Both girls were diagnosed with arthritis (one at 12 and one at 14l) and both have dealt with depression and anxiety. Seeing a therapist is an excellent idea and I'm so glad you are seeing one regularly. My younger daughter was diagnosed with Crohn's at 16. Her arthritis is also very severe (she has already two joints replaced and many surgeries), so she has struggled more than my older daughter. BUT, she got through middle school, high school and college and did very well!

In terms of Crohn's, being on a biologic could actually really change your life. It did for both my girls. I was very hesitant to put them on biologics but when they started Humira, they both went from being in a lot of pain and miserable to being normal kids. My younger daughter was actually also diagnosed with Crohn's while on Enbrel - I think she had Crohn's from when she was 11-12 but I think Humira treated it though she was taking it for her arthritis. However, when Humira failed, she tried Enbrel and that's when her GI symptoms came back and she had an endoscopy and was diagnosed. Once she was taken off Enbrel and put on Remicade, she felt a whole lot better.

So most doctors will start with either Remicade or Humira if you have both Crohn's and psoriatic arthritis, since they will treat both. As mentioned above, Humira is an injection every 2 weeks. It used to be very painful but it has been reformulated without a preservative (which was what made it burn), so if you see old posts referring to burning pain with Humira, just know that it's NOT a painful injection anymore. It can be given with an auto-injector or a syringe, depending on what you prefer. With Enbrel, did you do your own shots? Was it hard for you (if you did them)? Because it is possible to arrange for a nurse at the health center at your college to do them if you find you get anxious doing them yourself. Some people have a hard time giving themselves shots and that's absolutely ok. My husband also has autoimmune arthritis and he absolutely will not give himself shots - I have to do them. But my girls learned to them by themselves when they were 13 and 15 and actually found that they preferred doing them themselves - they had more control that way.

Remicade is another good option and in that case, you would go to a hospital or infusion center every 4-8 weeks. Some kids/teens/young adults really prefer Remicade because you don't have to think about meds often and nurses do all the work. It's an IV, so it is a poke, but some kids really prefer IVs to injections. It's about 2 hours for the infusion plus another hour or two to get the IV, get the medication sent from the pharmacy, to do a saline flush etc. You can even have "home infusions" where your nurse will come to your dorm room or home. Some college students prefer that because it saves time. My girls quite liked Remicade infusions (my younger one is on Remicade now) - they usually napped or watched TV or did homework.

I think the main thing to remember is that there are VERY effective treatments for both psoriatic arthritis and Crohn's that can really change your quality of life. You shouldn't be afraid of them. Why was Enbrel hard for you? If you can tell us why, perhaps we can help. Did it not control your arthritis? How is your arthritis now?

In terms of Budesonide, it's a steroid that is not used for the long-term, but it really does help in the short term and my daughter got a lot of relief from it too. But you need what is called a maintenance med, and honestly biologics like Remicade or Humira have fewer side effects than immunosuppressants like MTX and 6MP/Imuran.

In terms of being immunosuppressed and in college with COVID going around, I would first make sure you are vaccinated and up to date with boosters. And besides that, you can wear a mask in classes when there are high levels of infection/lots of cases on campus. My older daughter is in graduate school and that is what she does. Besides that, she lives very normally, like other grad students, on campus. And both my daughters have had COVID while on biologics and while it's not fun, thankfully it was relatively mild and went away within 10 days. Both were given Paxlovid by their doctors since they are immunocompromised and that made a HUGE difference.

Do reach out if you have any questions. Feel free to PM me if you have any questions relating to arthritis or pain disorders (my younger daughter has really struggled with a pain disorder too, but she finds exercising and staying busy help her a lot). And please remember that this is the worst phase of the disease - when you're just diagnosed and flaring. Once you're on a medication or a combination of meds that works, you'll be able to live your life.

Yes, i did my own Enbrel injections. Honestly the reason it was hard was
(1) because of storage haha. It wasn't very convenient to have to store a medication that required being cold, when my dorm doesn't have its own kitchen. But if Humira does help Im sure I can figure it out
(2) I did it for so long. I have ADHD and remembering to do it could be hard, I managed not to miss a single dose for a year by the end but that in and of itself still included a lot of panicking about how to get the packages, etc...

Luckily i should say my arthritis is under control ATM!

This is my first step in trying to connect to people and it is making me much more hopeful to say the least

reading both of your messages, i just have to say, i am really glad your children have such a considerate parent and thank you for everything

 

[my little penguin]

Ohhhh cold storage
So you can have the medicine sent from your pharmacy to student health services - they should be able to store it for you cold and easy to get the shot there either by then or you do it yourself

other option would be a “medical grade “refrigerator
Pharmacies use them to store drugs cold .
They are the size of a dorm refrigerator but actually keep things like drugs cold and can be in your dorm room.

my kiddo will be in college next year abd is planning on shipping the meds from the pharmacy to student health
Just to lesson the worry .

 

[user 447597]

Ohhhh cold storage
So you can have the medicine sent from your pharmacy to student health services - they should be able to store it for you cold and easy to get the shot there either by then or you do it yourself

other option would be a “medical grade “refrigerator
Pharmacies use them to store drugs cold .
They are the size of a dorm refrigerator but actually keep things like drugs cold and can be in your dorm room.

my kiddo will be in college next year abd is planning on shipping the meds from the pharmacy to student health
Just to lesson the worry .

Yeah if i end up going that route i'll look into it!

 

[user 447597]

I am back...!

had my MRE near two weeks ago, and i have my follow-up with my gastro on wednesday. The MRE went alright all things considered, I just wanna know what my gastro saw/has to say so i'll see.

Things have been hard physically though tbh. My stomach pain is just nauseating sometimes and it's hard to stay positive. My pain disorder has also been very intrusive these days.
It's even harder to stay positive because i'm really nervous about getting sick, and I'm pretty much the only one on my (very large) campus that wears a mask... I don't have a support system near me, I don't know where I'd go if I got covid, and the idea of that happening while I'm still struggling to understand my Crohn's is so devastating...

It just seems like so much is happening, and my semester hasn't even started. Last semester, I struggled sometimes to follow along since I would have to leave the classroom more often with my stomach issues. Sometimes just to stand in the bathroom, wait out the pain. I'm trying to keep in mind some of the words said to me here, that people have gotten through this, but it's hard haha. I just want to feel alright in my body and safe going outside

I hope i get some kind of useful advice/plan going forward on wednesday with my gastro . And thank you for anyone who reads this, i just needed to get these feelings out.

 

[user 447597]

Hi any one reading this, I'm back after my gastro appointment today. It's a little silly but everytime i get an MRI, or in this case MRE, im like "What if they find nothing?!?!" lol... they did not find "nothing"... the crohn's is very real- apparently there's also inflammation in a part of my small intestine that the Budesonide doesn't reach.

But, I feel a lot better. I was really nervous, as I said that I would be, going on Humira, but my doctor recommended Stelera and after reading about it, it made me feel very hopeful. Something that is only every 2 month or so is very doable for me and it sounds like people have a lot of positive experiences. I hate IVs but I can definitely get through them lol.

So we'll see where it goes. I would have been a lot more nervous about today without the forums here so glad i found this space ^^

 

[my little penguin]

So glad the doc appt went well
I can say my child (young adult-he ) has been on Stelara for 5 years now since 2017
He takes his every 4 weeks but every 8 weeks is the norm
Syringe is spring loaded to cover the needle with a cover when the shot is completed
Tiny needle
No real burn
Low infection risk (much lower than remicade /humira )
Only draw back
It’s only good for 4 hours max at room temp
So it has to be kept cold all the time until 15-20 minutes prior to injection
Can’t be frozen

student health should be able to give you injections and store the med
Might be worth asking

glad you have a plan

 

[my little penguin]

@marsaturn
How are things going ?
Any improvements?

 

[user 447597]

@marsaturn
How are things going ?
Any improvements?

Hello! it's been a few days since i've had a lot going on, but I just got confirmation tomorrow that I will be able to go on Stelera, and my infusion will be on September 30th. i've been doing okay but still having some pain. There are a lot of other things going on in my life right now. Having an infusion date though is very good to know!!