My husband and I are dreaming of remission

[SS410]

AAAGGGGHHHHH!!!! That is my best Crohn's scream.

We went to the ER Thursday morning. My husband's pain was so severe, they got him to a room quickly. He received a shot of Dilaudid. And then another, and another, and a few more.
I know the ER is about the worst place to be but I think we both felt this validated things. He has been going downhill for a few months and the treatment from the doc has been very slow. 'Take this and wait a few months' was said more often that I liked.
He was admitted and given high doses of Prednisone to help with the swelling and antibiotics. Well, the Prednisone didn't help like they hoped it would.
The plan now is to start Humira and see how it works. If he isn't getting the effects the doc wants in a month or so, the doc is going to turn to surgery to remove the scar tissue.

I don't even know why I am writing this. We are worried about the Humira, we are worried about having surgery and scar tissue building up elsewhere, I am worried about how he will receive the nutrients he needs, and we are both worried about work and how much we will miss when (I think he will have surgery) he has surgery.

I would like to hear Humira stories, good and bad. Also, surgery stories. Or any bits of realistic encouragement.

Thanks everyone :ghug:

 

[crazycanuck]

Well I am on Remicade and when that desicion was being made I was given the choice between Remicade and Humira as apparently they are very similar drugs just varrying slightly in way it is produce and administered. As I am scared to death of needles still.... I was chose Remicade.

I've heard a ton of good things about these drugs though, and although I didn't check, you may want to check out the "Humira Club" subform here and ask all your specific questions about the drug there.

I have to say though I was worried about Remicade too at first and my mom flipped when she heard of the potential side effects but without those drugs I wouldn't have gained the 30 lbs I did since starting just 6 months ago or have anywhere near the quality of life I have right now. I can't say I regreted it for a minute.

Also after starting Remicade some of my intestines healed so fast that some scar tissue was formed and in spots my intestines became quite narrow in places. As a result I had to go in for a "procedure" they called it. Basically it involved them putting a balloon like thing into the narrow areas and blowing it up. This stretched the intestines out and didn't remove any scar tissue but rather just broke it up a bit. Not sure if this is what he might be having done or if he is actually having it removed but even in the event he is having it removed that is an extremely normal procedure and you'll find a ton of people on the forums that have gone through that themselves.

 

[LucyL]

I smiled at your "scream." I've had a few of those. It is so frustrating, between the different drug treatments, surgery, pain, confusing or uncaring doctors, it's really a tough road. But well worth it...life that is. Get yourself informed about it all; then make the best calm, intelligent discision you can; that's all any of us can do. You and your husband sound like you have a good relationship; I know my husband and I have gotton closer sine my diagnosis and surgery in March...there are good things to be had with this disease. I wish I had spot-on good advise, but I don't. I think your doing the best anyone can do; keep asking questions and educating yourself.

Surgery can be a good solution to get rid of the pain and possibly get to remission. And a lot of people recover quite fast. If your husband's in otherwise good health, healing can be very quick.

Hang in there, you're not alone, and keep fighting!

Lucy