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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
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.
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.
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.