As you guys know, my husband spent nearly 2 months in the hospital, and wad diagnosed and treated for both Crohn's disease and c-difficile infection. He came home on May 1st on 80 mgs of pred, and remicade, lialda, canasa and vancomycin 4 times a day. He's now on 15 mgs of pred, remicade every 8 weeks, canasa, lialda, and vancomycin 4 times a day (until he gets completely off the prednisone). He went to 15 mgs of pred (down from 20) last wednesday and the last couple of days have been kinda shaky.
He does not have fully formed stool - hasn't had fully formed stool since all this began in March. At best he has mushy stools 2-3 times a day. And the last couple of days he's had diarrhea twice, and a little extra stomach activity (you can hear it a little), and some gas, though no cramps or pain. He seems better today than yesterday, says his energy is better, and says his tummy is feeling a little better too. So I hope is body is just adjusting to the lowered pred dose.
Also, if you guys remember, we had a scare with demyelinating polyneuropathy and we were worried that remicade was causing central and or peripheral nervous system disorders. He's had 2 MRIs and they've both been clean, and though he shows no nutritional deficiencies now, the neurologist feels his nerves were affected by severe malnutrition that he suffered those 2 months in the hospital and that's what caused his polyneuropathy, and that his foot drop was caused by damage to his peroneal nerve bundle due to him losing weight so rapidly. So, for now, the neurologist thinks he's slowly improving, and he's to have annual MRIs and nerve conduction studies every 6 months, just to keep an eye on things, and to make sure he continues to improve.
So, for now, things are ok - he's slowly getting off the pred, and once he stops the pred, he can finally stop the vancomycin! I can't wait! After being on remicade and prednisone, some things have gotten worse - he has bad acne, and has developed a subaceous cyst (sp?) on his back, that needs to be cut. Also, he had a plantar's wart on his foot (that he was already having trouble removing), and it was just about quadrupled in size - they are now recommending that he should use pulsed-dye laser to try to get rid of it, because it's so large and deep. It seems like the slight acne and the wart are all out of control because of the meds and suppressed immune system.
My mom came here from India in the end of May to keep us company and give us encouragement and support, and she leaves on August 23rd. I've become so dependent on her, I hope I can still continue to keep a cheerful demeanor even after she's left to go back to India (where my dad is alone). I think things will be ok, if we can just catch a break for a little while to start feeling normal again. Get off the pred, stop the vanc, get on just maintenance meds, and live at least a somewhat normal life for at least a few months, before the next hurdle.
Can I say I'm tired? I know you guys have had longer marathons than this, but gosh, I'm so tired. I just keep hoping that life will go back to normal for at least a little while. I hope my husband continues to improve. My love to all of you, thanks for being here for me. I've started taking lexapro for my depression and anxiety, and once my mom leaves, I'm planning to see a therapist as well, so I'll have someone to talk to, and learn some coping skills. I'm also trying to get some scheduled activity that does not involve my husband (like tennis), where I can take out my anxiety, frustration, anger etc. and go back rejuvenated.
I find myself wishing and hoping that remicade will bring my husband to pred free remission and keep him there for a very long time, but at the same time I'm also so worried about all the possible side effects (his mother died of cancer, and it's constantly on my mind that the meds he's on can cause cancer, when he's already probably genetically predisposed to cancer). I hope we're making the right choices here. Gosh, I'm learning to live with a chronic illness, but OMG, you need a lot of mental fortitude to focus on today, and not worry about things that you really can't control, that aren't here yet. My mom gave me that strength by her mere presence, and now I have to learn to find it on my own. I hope I'll succeed.
I hope you guys can find some cheer from this note. My husband was very very sick, and he's much better today - he'll probably never be the same man he was before March, but he's here, and he's better. It's not easy to walk this path, and there are absolutely no guarantees (which we all know intellectually), but this disease makes us face that fact every single day, and removes the wool from our eyes about any sense of security we may have otherwise had, but we can do it. I still cry every now and then, but I know we can do this. We can still live a good life, and we can still have lots of good days. We can still laugh, we can still have friends, and we can still love one another.
To those not feeling well - keep your chin up, things will get better; if not today, then tomorrow.