A bad iphone picture- but we were waiting to be discharged. Which took forever. for no reason. SIGH. I don't ever want to have to go to hospital in this country again. (knock on wood!)
Well we found out what was going on with him. It's not good news. Not as bad as it could be, but still no good.
He doesn't have diverticulitis like they were telling us. He has Ulcerative Colitis.
I still have a limited knowledge on the subject, so forgive me if I give incorrect information.
BUT- from what I understand, this is a bastard cousin of Crohn's Disease. This is a chronic illness and will affect him for the rest of his life. In fact- He has had it for years, or symptoms for years, he most likely has had it for life already.
James has always had a finicky stomach, and there has been things in the past I have thought as odd, and even made comments to him on. After reading some of the symptoms and thinking back, I think, oh god, thats what it was. Well damn.
Basically there is no cure. The only cure is the removal of the entire colon- which obviously we DON'T want to do that. They don't even understand what causes it. There is obviously a genetic link, and after talking to his mom, we found out his grandmother was diagnosed with it shortly before she died and was suffering the symptoms for years previous.
There are thankfully plenty of medicines and treatments available, but they are only for suppressing the disease and not getting rid of it. James will be on medication the rest of his life.
Right now he is on three medications, paracetamol (like Tylenol- which they dont have in this country), a steroid which is an immune suppressant (and I'm keeping him away from people as much as possible while he is on this cause he won't be able to fight off colds and such), and another medicine for the illness. The third is the one he will be on for, well, ever.
James is actually ok with the diagnosis and the fact that he will be dealing with it for life. Hes actually better with it than me. I'm pretty upset and don't think about it too much because it makes me wanna cry. He said this morning that there is no reason to dwell on it, whats done is done and he is just going to go forward with everything.
Some good things though are that right now his illness is very mild (there is nothing to say that it will stay that way, but with medication and watching his diet it will hopefully stay mild) and is very treatable for the time being. Some people have to have steroid injections daily. He is not there- yet. (as his doctor told us this morning.) His doctor told us that many people go on and live very normal lives with this illness and to not stress to much about it. James needs to eat colon healthy foods and find out what works for him. NOT high fiber as he was advised previously.
Some scary things is that this illness can very easily lead to colon cancer. The link between the two is disgustingly high. He will have to be regularly checked out from now own- regular colonoscopies and biopsies. Another thing is, if he continues to have bad attacks, they will take his entire colon. Two very real and scary possibilities.
But these are all extreme things. He is still really young and relatively healthy. And for the moment, he is in a great mental state and is really excited to work on getting his body in the best place it can be.
For me, I am of two minds about the entire thing. On the one hand, I am very happy that he is doing better and that we have a diagnosis. These types of diseases can take a very long time to diagnosis and James was figured out very fast. Now we know what we are up against and can act accordingly. On the other hand I am sad. I am sad for him and I am sad that this entire thing has happened. I know this is a very young attitude, but you feel like these kinds of things won't happen. Not to you and not this young. I am a little angry and a lot upset. But this is part of life, I just need some time to absorb the situation and deal with it.
And for right now? I'm really happy to have him home.
I'm glad he's home too. I'm sorry that it turned out this way & that it just couldnt have been something as small as food poisoning. I can only imagine what mixed feelings you must have going on right now. The person you love is sick, not dying sick but still sick & will have to deal with it for the rest of not only his life but yours too. Taking medicine for the rest of your life to stay somewhat normal is hard. I have my thyroid removed last year & need to take meds the rest of life, and although James' situation is way worse than my little thyroid, I know how much it sucks to know you're never going to be the same 'normal' person again. For now, try not to dwell on what might happen in 20 years, focus on today & the fact that you have him home :)
ReplyDelete*hugs*
So glad he's home and that you guys know what's going on. We'll keep you in our prayers!
ReplyDeleteI feel so sorry hearing all of this, but it won't help of course.
ReplyDeleteI know this kind of diagnosis only happens to "other people". I understand why you are so upset about it. Many people do manage well with this diagnosis and illness. There can be diets and such, who kind of make the suffering better.
She went vegan and it helped at least a bit :
http://intestinegoddess.blogspot.com/p/going-vegan.html
I hope you two will hold onto each other during such a difficult time.
Feel hugged.