Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.


Fri, September 14, 2018 6:50 PM


Wondering if I could get some advice or guidance as I am going through a bit of a difficult time. 

Had a colonoscopy done today and they have found severe swelling and inflammation, I was told I would need to be given infliximab but would need to stay in hospital a few days whilst they administer it (never stayed in a hospital in my life)

The doctor has said that if this doesn’t work it’s surgery which means a stoma bag being fitted for at least a few months. I am 22 years old and the thought of this is terrifying.

i am basically just in a very bad place at the moment, worrying enough being in a hospital but the potential for surgery has me so worried. I’m just wondering first of all has anyone had experience of the infliximab and does it work? How difficult is this bag? And how do you cope with being in a hospital 

Joined Sep 14, 2018

Wed, September 19, 2018 4:36 PM

Reply posted for Jsd.

Infliximab works in general. Meaning that it has a clear effect on a good percentage of those who use it. That percentage is something like 50%, though. It also takes time before it has any effect. Usually weeks or months. But it's great for many and they stay on it for many years and maintain remission.

I have to ask, are they also giving you any kind of steroid treatment? This is uaully the first line of defense for these diseases and they tend to work much faster than anything else, especially the IV variants. The reason most people don't take them long-term is that they have nasty side-effects and aren't meant for long-term. But they've definitely saved my life more than once.

I've gone over 13 years since my diagnosis, and I've had 2 hospital visits. I've still been able to avoid surgery with the many treatment options that are available to us.

FPO kumputer
Joined Jul 19, 2013

Sat, September 15, 2018 4:04 PM

Reply posted for charbs.

Thank you for your reply, think things are sounding slightly more positive today but it’s still a strong possibility that this stoma bag is going to be an option the specialist will use. 

I agree about a support group, I don’t know anyone else who has this disease, I did find a few help lines but I’m not going to be able to speak until they open on Monday which is very difficult too. 

Joined Sep 14, 2018

Sat, September 15, 2018 1:36 PM

Reply posted for Jsd.

When I was in the hospital I figured it was out of my hands, and all these people were there to help me, so I just relaxed.  I have not tried humira but many people  have had good results. I’m just not one of them.  As for the stoma, I assume you are having a j pouch surgery which I had and while it’s a long time to recover from, things do get better eventually.  Carve the gasket as close as possible to the size of the stoma, otherwise your stomach acids will eat you up at the stoma.  And I would recommend you always wear the strap around your waist because that seal always fails eventually.  And check your bag regularly.  It not only carries waste, it carries gas, and will fill up like a balloon.  You can bleed that gas off.  Smells-just like farts.  Good luck.  I’ve been there, done that.  It’s not easy, but you can do it.  Find a support group it you can.  It helps a lot to know you’re not the only one going thru it.

FPO charbs
Joined Oct 31, 2016

Related Topics

How do you attend meeting...
Author Image dede1
Joined Jun 27, 2018

With my career I am often having to be in long 2-3....

read more

New here
Author Image Trmpt241
Joined May 18, 2019

I haven't ever really talked to anyone outside of ....

read more

Finding a job?
Author Image Erinmohn86
Joined Apr 15, 2019

I have had Crohns for over 17years and have gone t....

read more