Got diagnosed with Crohn's disease, now really nervous about the future

[ricemilkbunny]

I'm 19 years old. Started dealing with what I thought was just a bout of really bad hemorrhoids back in early February. Everything I googled said it would last like a week. 3 weeks later when I was still suffering pretty badly I started to freak out. I had a consistently upset stomach and could not eat anything without getting burning diarrhea and visiting the bathroom 6-8 times a day. I finally visited a GI and got a sigmoidoscopy. And... yup, Crohn's disease.

I got prescribed Prednisone, which has helped slightly but definitely not enough so far. I'm still in the midst of my original flareup and trying to manage it with an extremely plain diet, my Prednisone, and CBD. I'm still in sooo much pain every single day. I've lost 40 lbs in the last 2 months alone. I know I need to go on a biologic and I'm praying that it helps me achieve remission because all I want is to finally have a normal, pain free day again. I've been waiting though because my GI recommended I wait to start Remicade until after I already got my 2nd dose of the vaccine, which I'm supposed to get on the 19th. Waiting has been brutal, and living in fear of the unknown is even worse.

I'm in so much pain and discomfort that I am really eager to get on a medication and start treating this, but at the same time being on an immunosuppressive drug really scares me. I'm worried about side effects like cancer or lupus, and people who say that they are constantly catching colds or getting infections. I worry about the cost and how I'm going to afford this for the rest of my life, and if I'm actually ever going to be normal and feel good again. I saw a statistic that said 75% of people with Crohn's disease eventually have to have surgery and that is terrifying to me. Does this mean that no matter what I do to treat it and take care of myself I'll still just get sicker and sicker? Even if I stay on top of everything?

 

[Lisa]

Welcome to the forum. I've been on Remicade now for about 15 years, with little blips along the way, but it has DEFINITELY been worth it! I'm sure others will chime in with clinical info - remember the chances are small of having issues, not much more usually than the general public.....

Take a look around the forum, feel free to message me, or post questions publicly - we are here to help!

 

[Crabi]

Im sorry to hear about your troubles, many folks have or are going through this same kind of thing, be thankful you have it diagnosed early and can hopefully get into full remission and hold it there. I am 54 and now after 20 plus years of stomach problems and telling me it was IBS a doc finally did the tests for IBD, now i wait for the colonoscopy. I think back to so many years of problems and no solutions. i have read allot about this thing since i was told i probly have it, there is allot of different things they can do to help you, the more you get it into remission the better off you will be

 

[my little penguin]

So things I can tell you
My kiddo was dx at age 7
He is now 17
He has been on biologics since age 8
No extra colds or infections despite going through elementary and middle school around snotty kids
Now high school
The 75% surgery rate in pediatric crohns for five years was a stat before they had biologics to use
Last statistic I heard was 30-40% when biologics are used

so much better
Ds is almost 10 years of disease -no surgery

normal every day life as far as dealing with crohns
Normal bloodwork and pink healthy intestine

he also has juvenile arthritis which is more of an issue

fingers crossed the remicade kicks in quickly
Typically takes 6 weeks to be effective

good luck

 

[valleysangel92]

Hello, welcome to the forum

I was also diagnosed at 19, but had been undiagnosed for a long time and needed surgery within 6 months of diagnosis.

No one can tell you for sure how your future will be, but treatments are getting more successful (and safer) all the time. Some people with Crohn's disease will be in flares regularly, personally I've never been in full remission but my disease is stable, I haven't been admitted to hospital in 5 years and although I can't work I have a good quality of life (I have multiple other conditions that stop me working). The opposite end of the spectrum are people who get into remission reasonably quickly and stay there for 10+ years. No one can tell you which one you will be, many are somewhere in the middle but what I can say is that surgery isn't necessarily inevitable.

I am currently on a biologic called vedolizumab, in a new injectable form. I was on the infusion form of this drug for nearly 5 years before injections became available. This drug didn't even exist when I was diagnosed so that shows how things are progressing. When I started Vedo it was my last treatment option ( failed all other immune suppressants and allergic to anti-tnf like infliximab). Now there are lots of drugs in the pipeline for if I need them.

Lots of people with Crohn's manage to have a relatively normal life, most have jobs, lots go to college, get married etc. I've been in a very happy relationship for 8 years and although my health causes difficulties my relationship hasn't been damaged by it.

I can really relate to how scary things are right now so if you need a chat to someone who had a similar experience you are welcome to message me.