- Joined
- Jun 19, 2011
- Messages
- 4
Hi, I'm new here, although I've been lurking around for a while. I'm posting in the hope that maybe someone might have an insight into my husband's situation. I'm confused and scared and I don't know what to do. I would be super appreciative of anyone's advice or thoughts.
He was diagnosed with crohn's at 15, and is 30 now. He had a resection at 16, another at 28 (~18 months ago) to deal with strictures - they removed a few inches of the terminal ileum (they never told us how much exactly, even though I asked a bunch of times). The surgery went well, and his disease had been pretty predictable up until that point. Prednisone has always worked well to control flares, which is a good thing given that he tends to burn out on biologics (remicade, humira, and now cimzia) after about six months. Methatrexate worked pretty well but the nausea was overwhelming. We stopped that when it became clear that the strictures were going to keep causing obstructions and that surgery was the only option.
Six months after his resection, he started to develop intermittent pain in his customary location - right below the bellybutton. Some bloody diarrhea after naughtily eating popcorn :mad2:, but no other major symptoms. No signs of obstruction, his usual achilles' heel. The pain would come and go, but neither pred nor antibiotics did much to help (he tried them on and off). He was getting by on cimzia, and for a while it seemed to be helping - he would feel a bit better after an injection, often. Although maybe that was just wishful thinking.
About six weeks ago, right after he had influenza A (treated with tamiflu), the pain got much worse. And it basically never stops. Same location. Still no other major symptoms, except decreased appetite and increased thirst. Eating didn't seem to affect things much, but the pain was definitely worse in the morning, right when he wakes up.
He had an MRE (abdominal MRI) which showed slight inflammation (no areas of acute inflammation or stricture) and a slightly enlarged spleen (which had been noted 6 months before too). Bloodwork (CBC, liver function, sed rate, pancreas tests) consistent with slight inflammation, nothing else. Well, other than slight anemia, which he pretty much always has.
Since then, he's started to show more flare-like symptoms - bloody diarrhea, occasional vomiting, really intense crampy pain after eating as well as in the morning. He's in constant pain. Still no signs of obstruction. His GI said to try pred to get what he presumes is a flare under control. But despite being on 60mg, it's doing absolutely nothing. If anything, after 3 days at this higher dose, he seems worse.
My husband knows his disease pretty well, but we're at a loss. If it was a flare, why isn't he showing more acute inflammatory activity? And why wouldn't the pred be helping? He thinks he's absorbing it normally, he has the sweating and increased appetite as per usual.
I am going out of my mind googling gallstones, kidney stones, liver problems, abdominal fistulas, abcesses, ulcers, wandering spleen - the thought being that maybe something else is causing inflammation which then feeds into his GI system somehow? But I really have no idea. We were planning if the pred didn't work to have him admitted to try IV steroids, but what if it's just going to exacerbate some underlying problem? I feel like a barium swallow and/or ultrasound and/or CT are called for at this point, but his GI (who I normally really like) seems quite blase.
Thanks for reading this novel. I'm grateful for the space to talk about what we're dealing with. I'd give anything to be able to help. He can't go on like this.
He was diagnosed with crohn's at 15, and is 30 now. He had a resection at 16, another at 28 (~18 months ago) to deal with strictures - they removed a few inches of the terminal ileum (they never told us how much exactly, even though I asked a bunch of times). The surgery went well, and his disease had been pretty predictable up until that point. Prednisone has always worked well to control flares, which is a good thing given that he tends to burn out on biologics (remicade, humira, and now cimzia) after about six months. Methatrexate worked pretty well but the nausea was overwhelming. We stopped that when it became clear that the strictures were going to keep causing obstructions and that surgery was the only option.
Six months after his resection, he started to develop intermittent pain in his customary location - right below the bellybutton. Some bloody diarrhea after naughtily eating popcorn :mad2:, but no other major symptoms. No signs of obstruction, his usual achilles' heel. The pain would come and go, but neither pred nor antibiotics did much to help (he tried them on and off). He was getting by on cimzia, and for a while it seemed to be helping - he would feel a bit better after an injection, often. Although maybe that was just wishful thinking.
About six weeks ago, right after he had influenza A (treated with tamiflu), the pain got much worse. And it basically never stops. Same location. Still no other major symptoms, except decreased appetite and increased thirst. Eating didn't seem to affect things much, but the pain was definitely worse in the morning, right when he wakes up.
He had an MRE (abdominal MRI) which showed slight inflammation (no areas of acute inflammation or stricture) and a slightly enlarged spleen (which had been noted 6 months before too). Bloodwork (CBC, liver function, sed rate, pancreas tests) consistent with slight inflammation, nothing else. Well, other than slight anemia, which he pretty much always has.
Since then, he's started to show more flare-like symptoms - bloody diarrhea, occasional vomiting, really intense crampy pain after eating as well as in the morning. He's in constant pain. Still no signs of obstruction. His GI said to try pred to get what he presumes is a flare under control. But despite being on 60mg, it's doing absolutely nothing. If anything, after 3 days at this higher dose, he seems worse.
My husband knows his disease pretty well, but we're at a loss. If it was a flare, why isn't he showing more acute inflammatory activity? And why wouldn't the pred be helping? He thinks he's absorbing it normally, he has the sweating and increased appetite as per usual.
I am going out of my mind googling gallstones, kidney stones, liver problems, abdominal fistulas, abcesses, ulcers, wandering spleen - the thought being that maybe something else is causing inflammation which then feeds into his GI system somehow? But I really have no idea. We were planning if the pred didn't work to have him admitted to try IV steroids, but what if it's just going to exacerbate some underlying problem? I feel like a barium swallow and/or ultrasound and/or CT are called for at this point, but his GI (who I normally really like) seems quite blase.
Thanks for reading this novel. I'm grateful for the space to talk about what we're dealing with. I'd give anything to be able to help. He can't go on like this.
I wish you nothing but the best.
