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New to crohns

I have always had issues with my bowels since I had pancreatitis 11 years ago, but I just dealt with it . In 2018 I started having joint pain all over , running random fevers in the evening (feeling like I had the flu) but to wake up the next morning perfectly fine . It takes me a while to get my body moving . In July 2019 I started having stomach pain and went to my Doc , they sent me to the er where I had severe sepsis and obstruction. My blood pressure plummeted and I was hospitalized for 3 days until they put me on prednisone. My Doc said I have a 15 cm spot that stays inflamed no matter how much prednisone I take . I have to take 50.000 units vitamin D along with b-12 and iron due to me being anemic . I had gained wait previously and now can’t lose any and they diagnosed me with Crohns. Now they want me to start Humira . I am so nervous about it but I do hope it can help me lose weight and feel better where I can exercise more . No one seems to understand that I feel awful but I can’t explain it . I am 39 years and never thought I would ever feel like I’m 70
 

scottsma

Well-known member
Location
Tynemouth,
Hello Amanda and welcome.I'm sorry you have to be here of course, but you've come to the right place.We all understand how you're feeling and you'll get more posts very soon from others. There will be other folk who can share with you their experience with Humira and all you're going through.I just wanted to say Hi and hope you begin to feel better soon.
 

my little penguin

Moderator
Staff member
Hugs
Ds was dx at 7
Now is 16
He was humira for over 5 years
Worked like a charm for his arthritis and crohns
Once they wean you off steroids the weight should drop
It’s takes a while for humira to be effective though
3-4 months
So I would expect steriods until humira kicks in fully
Then slow wean from steriods after that

good luck
Ds is now on Stelara and methotrexate
 
Thank you so much , this is all new to me and I’m just struggling with more joint pain than the actual issues of crohns . I thank you for the feed back and glad to hear that so many have used Humira
 

my little penguin

Moderator
Staff member
Arthritis is an extra intestinal manifestation of crohns - please see a rheumatologist
Spondyloarthritis is associated with inflammatory bowel disease
It can flare independently of crohns flares or only when your crohns flares
Ds has the type that flares whenever it wants whether his crohns is good or not

 
Yea mine is just whenever it feels like , doesn’t always come along with my crohns flares . It’s horrible to say the least .
 
Question, the 15 cm of your intestine remained inflamed even while on prednisone or once you stopped taking it? I am wondering how good are steroids on relieving information? I know that doctors don’t want to keep patients on steroids for long but wondering if they actually work.

I have not been diagnosed but I also have really bad joint pain in my hands. My doctors and GI specialist don’t know if it’s a symptom of an STI or actual crohns. I am just waiting.
 

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome to the forum.Why not tell us how you come to be here.? You'll get lots of support and advice should you need it and your story might be of help to others .I hope today is a good day for you.
 
Question, the 15 cm of your intestine remained inflamed even while on prednisone or once you stopped taking it? I am wondering how good are steroids on relieving information? I know that doctors don’t want to keep patients on steroids for long but wondering if they actually work.

I have not been diagnosed but I also have really bad joint pain in my hands. My doctors and GI specialist don’t know if it’s a symptom of an STI or actual crohns. I am just waiting.
My symptoms improved on steroids however that 15cm spot remained inflamed even while on it for 8 weeks . Now I’m on Humira and have to have another colonoscopy to see how it’s working
 

scottsma

Well-known member
Location
Tynemouth,
It's all trial and error but hopefully you'll find something that does the job soon...Lots of people on the forum are on humira so maybe someone will
share their experience....hope this is a good day for you.
 
It's all trial and error but hopefully you'll find something that does the job soon...Lots of people on the forum are on humira so maybe someone will
share their experience....hope this is a good day for you.
I sure hope so , it’s just frustrating is all but they have added folic acid to my daily meds along with my vitamin d and b12 . I do have a little more energy so that’s a plus
 

scottsma

Well-known member
Location
Tynemouth,
Glad you're feeling a bit more lively.It can be very draining and stressful waiting and wondering.....I'm assuming .I'm assuming that you're young and that makes things so much harder.You need to go to Uni. or work ,go out with your friends or maybe you have a young family. But many,many people do all of those things and more while coping with IBD and it will get easier for you.One day at a time sweetheart....
 
Thank you , I have a three year old and it’s getting harder to keep up lol my two other kids are grown and help a lot . I just feel for anyone going through this . But thank you for all your kind words and encouragement
 

scottsma

Well-known member
Location
Tynemouth,
Anyone who has kids to look after while coping with this has my utmost respect.....I don't count myself as being seriously sick compared with a lot of people, so I'm glad I only have myself and my husband to worry about .Be kind to yourself.
 
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