22 and just diagnosed with Crohns..

[AshleighElizabeth]

Hey everybody,
My name is Ashleigh and I'm a 22 year old college student in Texas that was just diagnosed with crohns back around Christmas time. Life has been put on hold for me since I was diagnosed.. Countless doctors, unsuccessful medication and trips to the emergency room more often than I'd like. Next week I will be starting remicade. I'm really nervous about how it will go and the results for that matter. Has anyone else gone into remission after being treated with remicade? Since December I've been in non-stop pain which has lead to other health complications and slight depression.

I can't live my daily life as I normally did (school all day, then work, ten gym, cool dinner, yard word) now I'm just lucky to get out of bed and shower without a complication. I had a colonoscopy and an endoscopy back in December which was the source of discovering my crohns. It was also noted that I was anemic from all the blood loss in my intestines. Upon hearing this it was really difficult because I'm already underweight (100 pounds) and its hard to get the nutrition I need when it's immediate pain to consume anything including protein shakes or meal replacements.

Luckily, through everything I've had my boyfriend of one year constantly by my side. Without his care and support I'm not sure what kind of condition I would be in. The only hard thing for me is TRYING to explain the pain I'm in to him, but he just can't relate. Sometimes tears will start to stream down my face and it's hard for friends and family to know what I'm coping with because from the outside everything looks normal.

Anyways to sum this up, I would love to know how remicade has worded for anyone out there reading, or any advice on how to deal with depression, malnutrition, anxiety etc...

I look forward to all the support and pointers we can share with one another!

Ashleigh

 

[Clash]

My son was dx'ed last year at 15 and went straight on remicade. He had immediate results from the Remicade infusions and it was amazing. After the loading doses though, we had to tweak his schedule and up
his dose. We later added methotrexate and the combo of all that seems to have him doing great.

He has his energy back, no symptoms and is enoying the summer as any 16 year old would. I hope you get great results from the new med!

 

[AshleighElizabeth]

Wow auto correct in this post... Sorry guys haha. Clash, that is so great to hear. I'm praying for those kind of results. I would love to live it up this hot Texas summer as I've always done! Thanks for the positive feedback!

 

[Clash]

I bet Texas summer are fun. It was difficult when my son was flaring, too. I think he got really down about all that he was missing out on. We had a couple of movie nights where friends came and vegged on the couch with him and watched movies. It was good for him in the beginning but I think as the flare progressed it just took too much energy for visitors.

A lot of people respond to Remicade quickly but don't get discouraged if it takes a few doses and sometimes like with my son it can take some tweaking and adjusting to get everything going in the right direction.

Excuse my grammar and spelling I'm on my mobile so chaos sometimes reigns when I type!ha!

 

[AshleighElizabeth]

Texas summers are so fun! We love to go out to the lake or to outdoor concerts. That's how I have been lately... We stay in and do most things at home whereas we used to go out to eat a lot and to movies and things of that nature. Last night my energy was so little that I couldn't make it through a movie on my own couch! And I know to be patient with the remicade treatment. I just hope that I notice improvement to life my spirits!

 

[alex_chris]

Hey Ashleigh,

Sorry to hear that you had such a rough time recently with Crohn's. There is a very good chance you'll end up to be much better with remicade (or it if doesn't work with humira or cimzia etc.).

Once you improve and your inflammation is better under control, you'll see that you will also gain our weight back and get your energy up again and generally feel normal again. My advice would be that meds will always only help you to get to remission, but you will also have to learn to manage your Crohn's through other means from a diet that works for you (or at least leaing out foods that will get you intoo trouble, in most circumstance anythng that is too greasy, spicy, fatty, sweet, oily, salty etc.), but also making sure you don't have any deficiencies like iron, magnesium, zinc, vit D, vit B6, B12 etc. deficiencies. Also, once you start feeling better you might want to try regular endurance sport, this is something that helps me massively.

Hope you get better soon!
Cheers,
A

 

[AshleighElizabeth]

Chris, managing my diet I know will be the hardest thing for me. I've always been a runner so it was all about carbs and lots of meals! I have an extremely high metabolism so I never watched to carefully what I ate because no matter what I couldn't gain weight! Do you have any suggestions on certain meals or a general outline of what to eat and what to avoid. Granted I know that different foods have different side effects for everyone...

 

[sfmreb2]

I started Remicade over 10 years ago. I have had no problems with it. Go over to the Remicade Club Support Group and read what is going on with others on Remicade. Click on Support Groups to find it. Good luck and I hope it works for you.:goodluck:

 

[dramaqueen]

Hey there,
I saw your post and thought I would leave a message. My name is Ellie, I'm 21 and was diagnosed with Crohn's last year. Crohn's disease is really hard for everyone, but I thought it may be comforting for you to hear from a girl your own age?
The last year I have been on a couple of unsuccessful medications which I had pretty bad reactions to, it was mainly the steriods that gave me some sanity, although they too had unwanted side affects (like hair growth and a puffed up face!) I've been on methotrexate for about 4 months now and so far I have not had a bad reaction but a couple of flare up symptoms like multiple mouth ulcers. Although I can't comment on the medication you are on, I understand the depression that you spoke about. Your body is under constant strain, you don't feel like yourself, you don't feel physically or mentally able like you used to be or even attractive (vanity does play its part obviously, we're human!) and you feel really lost. Although you will have Crohn's disease for life this state of loss and depression is not constant. There will be lots of little break throughs. You will start having better physical, and therefore mental days, and when you are fortunate enough to find a medication or system that can work for you, you can begin to feel in control again. It really changes your perspective on life, when you feel better you just want to make up for lost time. I have found that the last few months when I have felt more 'normal' than I have in a really long time, I have been more outgoing, adventurous and determined (because you want to take any opportunity you can to enjoy yourself!)
I'm really glad you have a supportive family and boyfriend, keep going (you can do it!) and best of luck. Ellie x

 

[alex_chris]

Chris, managing my diet I know will be the hardest thing for me. I've always been a runner so it was all about carbs and lots of meals! I have an extremely high metabolism so I never watched to carefully what I ate because no matter what I couldn't gain weight! Do you have any suggestions on certain meals or a general outline of what to eat and what to avoid. Granted I know that different foods have different side effects for everyone...

There are quite a few threads on this forum on diet. There are lots of suggestions there for recipes while you have problems and while you are in remission. You'll see once remicade kicks in (by the way, any reason why you aren't getting started on humira, which is more *user friendly* with self injections instead of remicade?) you'll be generally able to eat quite normally again if you cut out junk food, deep fried food, things like garlic heavy food or onions etc. You'll see, with your inflammation under control your intestine will also be able to absorb much more of the food you eat and you'll gain back weight. One way to support weight gain is by medical liquid replacement drink bottles (in Europe e.g. nutricia forticrps, neutral flavor), but I understood you tried that and it's hard to stomach. Other than that, right now when you got problems I would try all kinds of lightly seasoned and if possible well cooked porridge, and potentially if you tolerate that bread with a bit of butter and tea etc.

But as said above, for recipe suggestions while you have problems, I would check out the various threads about that on here.

Cheers,
Alex