Amarissa, hope you and your husband had a decent night's rest. I just wanted to write a longer note to lend you some of our experience, since they seem similar. My husband too was very healthy, 42, and was previously diagnosed with ulcerative proctitis, and he'd had one flare up of it in 5 years for about 10 days. Other than that, 100% normal - not even a cold in all those 5 years. Then, suddenly last march, he started having diarrhea, and we though, oh, ok, another ulcerative proctitis flare - so we went to his GI, who wanted to get a stool sample test just to be on the safe side before starting him on a course of pred. The results were positive for c-diff, even though he had not been on any antibiotics.
Well, 3 days after that, he was in the hospital, severely dehydrated, and really suffering from stomach cramping, and having to go the bathroom 30 times or so a day, with nothing but watery diarrhea with mucous and blood, despite having started on oral vancomycin as soon as we got the verdict that it was c-diff. In the hospital, they took a ct scan which showed profuse thickening of the bowel wall, and they called it pancolitis (the whole colon was inflamed). He was given fluids, and they did a sig scope, where they saw typical c-dif like pseudomembranes all the up up to the splenic flexture. But they said the ulcerative proctitis (which was his previous diagnosis) was not active. But just to be on the safe side, they put him on Lialda. He seemed to improve for a couple of days, and they released him to come home.
3 days after being home, he developed tachycardia from severe dehydration, and I had to take him back to the hospital. This time, they did another sig scope, and found that the pseudomembranes were well treated, and were getting better. So, the docs did not really understand what was going on - the GI thought it was post infectious IBS, and put him on various meds to help that (like elavil, and colestipol). But he still didn't get better. They put him on 40mgs of oral prednisone, and he started to do ever so slightly better . . . but again that lasted about 2 days, and he was back to pooping nothing but blood and blood clots, and being unable to sleep at night from the cramping, etc. even while on dilaudid.
They finally did a colonoscopy instead of just sig scopes, and found terrible inflammation starting at the traverse colon (past the splenic flexure). The biopsies revealed crohn's. The doc said it was so bad that it looked like hamburger meat, and that it was the worst inflammation he'd seen in his 15 years of practice! He upped the steroids to 120 mgs of solumedrol by IV. And my husband still didn't get better. And this whole time, he was not tolerating food, or ensure. They finally put him on peripheral parental nutrition, but by this point, he'd already lost 35 lbs or so. Also, the hopsital colorectal surgeon was assigned to my husband to follow in case, in case he needed surgery. He told us that if it came down to surgery my husband would come back with 2 stomas. One for the small bowel to drain fecal matter into, and one for the remainder of the colon to weep into. He said that maybe 6 months down the road, depending on his recovery, they'd do a reconnection surgery to connect the small bowel to the colon and get rid of both stomas.
After a week on IV solumedrol and seeing no results, the GI suggested remicade as a last ditch effort before going in for that surgery. I read about remicade and was really scared of all the side effects. But my husband and I discussed this - Yes, the side effects can happen, but it doesn't mean they will. But if you go in for surgery, you are 100% guaranteed that you will have side effects for the rest of your life. So, we decided to choose the option of giving it every pharmaceutical option before opting for surgery. He started remicade on 4/10, and within a few days was feeling better.
However, on 4/16, despite being on oral vancomycin, he started complaining of some bad tummy sensations, and the infectious disease doc tested him for c-diff, and it came back positive! Because of being on high doses of steroids, and on remicade, his immune system wasn't able to fight off c-diff despite being on antibiotics. So, they put him both oral flagyl and vancomycin. He had his second infusion of remicade on 4/25. And that made a huge difference. He weaned him off IV steroids, and he came back home very weak, and with foot drop, and still not feeling great tummy wise, but tolerating solid food like plain chicken and pasta and rice.
He had no side effects from the remicade, and he continues to get his remicade infusions every 8 weeks. However, he now has a side effect from the remicade - it started only after he got down to below 10 mgs of prednisone. On the day of the infusion, he gets a fever (that tylenol can't really keep down), and joint and muscle pain, which lasts 12-30 hours (it diminishes over time). But other than that, remicade has kept him healthy.
He was able to get off vancomycin only after fully stopping the steroids (which was around Christmas last year). Since then, until September this year, he was fine. But in september he said he felt a sharp pain (which is what he complained of at the start of this whole thing last march), so we got a stool test, and c-diff was positive again. He just finished a 2 week course of antibiotics, and he's doing ok. He may have some IBS issues now from the antibiotics, but i believe the remicade is keeping his crohn's in check. However, my husband will probably always have to be on the lookout for c-diff, because with remicade, his immune system is unable to completely eradicate the c-diff, so it can come back at any time.
Remicade saved my husband from surgery, and so far has given him over 18 months of good health. I wish you two will be able to say the same. Hang in there, usually once the docs figure out what is going on, they are good about getting you well enough to leave the hospital. (((Hugs))). It was an unbearably rough ride we had last year, but it got better, and life returned to some normalcy. It agree it is hard, and I still long to go back to our life before all this started . . . but our life today is pretty normal. So, hang in there, and hopefully the sun is just around the corner.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life