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I need help from old crohn's patients

A

ahm

Hi,

i had crohn's for 9 years now and I'm 24 years old. can you please tell me what to expect in the future? I'm really afraid to start relationship (I don't want to be burden to anyone) and how are genetics play role in crohn's ( I would die if I have kid and he has crohn's). i tried to talk to my doctor but he told me to neglect these thoughts every thing will be fine then told me that he suggests that I do colonoscopy every year to check for cancer!

I don't know if I'm clear or not, please excuse my language
 
ronroush7

ronroush7

Hi. If your doctor has you on the right medicine, things can stay under control. As far as genetics are concerned, I have heard it can be genetic but I haven't found anyone that I am related to that has it.
 
E

eleanor_rigby

Location
Cheshire, England, United Kingdom
Let me point you to this post:

http://www.crohnsforum.com/showthread.php?p=904436#post904436

This helped me when I had worries like you do. Crohns isn't a progressive illness in the sense like multiple sclerosis or COPD can be. It's usually something people live with rather than die from. My boyfriend is a social worker and has met people in their 80s still going with Crohn's. The most likely situation is that you will have periods of illness and periods of good health. New medications are coming out all the time and are changing things in a big way. It is rare for Crohn's to affect people to the extent where you would become a burden. Most people with Crohn's work, travel and have families. I am currently doing a PhD.

Having a family of your own is a personal choice. The risk is there. My dad has IBD as well. However my brother does not, nor does anyone else in our family. Most people still go on to have a family with Crohn's. The risks of passing it on are small. There's lots of other illnesses a child could inherit without the parents having a clue beforehand. You have to just hope for the best.
 
A

ahm

@ronroush7
no one in my family had crohn's and i hope no one have in the future. I'm currently on vedolizumab, i tried pentasa, infliximab,and humira. how many medicines do i have after vedo?

@eleanor_rigby

I will try my best by following strict diet, your reply and the stories in this forum gave me hope but I still don't know if i can have kids or not. do you the chances for crohn's patients to have crohn's son/daughter?
 
Tony H

Tony H

Well-known member
Hi Anm , I have had crohns/colitis since I was 22 , I am now 57 , I have had great periods of remission , one lasted the best part of 7 years , you learn to live with it , and the best thing about being diagnosed with it now is that there is new drugs coming through nearly every year , the main thing is if you have a flare is to get it under control as soon as possible , some people believe that diet has nothing to do with it and in general I agree with that , but there are some food that might make symptoms worse and if you keep a food diary you will learn to know them ,
As for passing on the disease , I have a son who is in his mid 20's and has no signs of the disease , hopefully he has his mothers genes (her dad is 93 and really healthy ).
 
ronroush7

ronroush7

ahm said:
@ronroush7
no one in my family had crohn's and i hope no one have in the future. I'm currently on vedolizumab, i tried pentasa, infliximab,and humira. how many medicines do i have after vedo?

@eleanor_rigby

I will try my best by following strict diet, your reply and the stories in this forum gave me hope but I still don't know if i can have kids or not. do you the chances for crohn's patients to have crohn's son/daughter?
Click to expand...
Stelara and Simponi are two other biologics the doctor might have you try. I thiught of Cimzia also. I think.it has been said that research is going on and there will probably be new drugs around the corner.
 
A

ahm

Tony H, I'm really glad to hear your son is doing well. I researched online and found that there is 10% chance my kids will have crohns which I think is too high for me, I might change my mind later. I had very bad years and I don't want anyone to go through it.

Thanks ronroush7 for your response I hope we both don't need them.

can anyone see this post any links to new drugs nothing cheers me up like hope, thank you all
 
G

Guerrero

Hi ahm, i'm 32 years old, and had many thoughts like yours, like what gonna happen in my future etc... my doctors always stay evasive as yours... so i looked and found some answers..

Well first of all being stressed about it doesnt help, so I try to relax and live at best the present

Second as you can see on this forum many members are older than us, they have had crohn's for like 20, 30, 40 years without all the medications there is now (by their times probably only steroids or simple immunosuppresants were available), and globally they have been fine for many many years except for some few months, years of flares... but in some way through medication and sometimes surgery they seem to make it.

Also I have the impression the disease may be aggressive when we are young but seem to become milder with age. So maybe around 20-30 yrs old we gonna struggle to find a treatment and sometimes change it but then we will be fine...

Regarding having a family, I think if you find a person you love and he/she want a family, then you wont think about crohns, as no one can say for sure there is any percentage your child will have it...

About new treatments, I asked it in another thread and a member posted this link:
http://online.ccfa.org/site/DocServe..._s_New_IBD.pdf
seems very encouraging!
there is many coming... this is also because humira and remicad the first biologics were a great success for pharma company, so every company is investing a lot on research to find new treatments, we are quite lucky as many other diseases dont receive that much interests.

I send you my support and dont hesitate to ask more questions on this great forum
 
A

ahm

thanks very much Guerrero your reply is really uplifting. sure no one can say the exact percentage but it's also sure not negligible. my situation is a bit complicated because i'm dating girl now and i really like her, I'm not sure about the kids issue now and I'll talk to her soon about it. that's why i have been stressed lately.
 
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