Hello, everyone.
I'm here because I need a place to talk about what is happening to my boyfriend. Back in December '10, he started having really bad diarrhea, and then there was blood. There was cramping, everything he ate made it all worse, and he was miserable. He went to his family doctor and they took stool samples and screened for infections and all that, but nothing conclusive. So he was scheduled to get a colonscopy at the end of January with a gasteroenterologist. During that month he became a shell of himself. I thought he was on his death bed. He wouldn't eat, he couldn't eat! He lost 30 lbs. It was heartbreaking and scary. I didn't know what to do for him other than pouring liquids down his throat to keep him hydrated. I think he was prescribed some acid reflux meds, possibly over the counter ones. I can't remember if he had any other prescriptions at that time....
When he finally went in for the colonscopy, the doctor showed me his pictures and said that his entire rectum and colon was inflammed. But it didn't extend into his small intestines. He thought it looked like Ulcerative Colitis, but blood work indicated it might possibly be Crohn's Disease. They just weren't sure. He was given a ton of Colazal. It seemed to help a little bit and after going over a strict diet, he could put a little food down. But he wasn't getting better. Then the doctor tried switching up his meds, added steriods....honestly, I cannot remember off the top of my head what he was given.
And then he got worse. Heavy bleeding again. He went to work and almost fainted, and his mother drove him to the ER. They gave him two units of blood because his hemoglobin count was half of what it should have been. And then we spent 11 night and 12 days in the hospital. He was given an IV to give him more blood and steriods. He was taking steriods by mouth. He's been taking Asacol ever since and Ultram for the cramping and Prednisone. Nothing was working. He wasn't healing fast enough. He just kept bleeding. He went on a clear liquid diet and lost an additional 20lbs. He was stuck so many times with needles and IVs that his arms looked like he was a crack junkie. It finally came down to treating it like it was Crohn's Disease and he got a Remicade infusion. And that finally seemed to work. He was given some more potassium and sent home, but still very weak. He...he looked like those pictures you see of starving children. His arms and legs were too skinny and his butt was bony and he couldn't climb stairs. It broke my heart. He still kind of looks like that now, even though it's been almost 3 weeks since we left the hospital.
At first, we thought was on his way to a slow recovery. Finally! He was gaining a little weight back, he could eat again! He devoured food (in small amounts, though) and had a better attitude. In fact, he was scheduled to return to work this week. But then he started bleeding again. The cramps were back even worse. He had to have two units of blood the other day because he looked like a ghost. He has trouble walking short distances again.
We saw the doctor again today and he thinks he might have C. Difficile. If it's not a C. Diff or other infection....they're talking about surgery. And I'm scared for him. He's 25 years old and he's been through so much. I have been there for him every single moment and it's horrifying. This disease is...I can't find the words. I keep a smiling face on to support him, but I cry the few moments I get alone sometimes. I don't want him to have to live with a colostomy bag at so young an age. It's just breaking my heart.
I just needed to get that out. I feel so helpless. I do everything I can for him, but nothing seems to make him better and I want to scream at the sky and just have him feel normal again for one more day! Please!
I'm here because I need a place to talk about what is happening to my boyfriend. Back in December '10, he started having really bad diarrhea, and then there was blood. There was cramping, everything he ate made it all worse, and he was miserable. He went to his family doctor and they took stool samples and screened for infections and all that, but nothing conclusive. So he was scheduled to get a colonscopy at the end of January with a gasteroenterologist. During that month he became a shell of himself. I thought he was on his death bed. He wouldn't eat, he couldn't eat! He lost 30 lbs. It was heartbreaking and scary. I didn't know what to do for him other than pouring liquids down his throat to keep him hydrated. I think he was prescribed some acid reflux meds, possibly over the counter ones. I can't remember if he had any other prescriptions at that time....
When he finally went in for the colonscopy, the doctor showed me his pictures and said that his entire rectum and colon was inflammed. But it didn't extend into his small intestines. He thought it looked like Ulcerative Colitis, but blood work indicated it might possibly be Crohn's Disease. They just weren't sure. He was given a ton of Colazal. It seemed to help a little bit and after going over a strict diet, he could put a little food down. But he wasn't getting better. Then the doctor tried switching up his meds, added steriods....honestly, I cannot remember off the top of my head what he was given.
And then he got worse. Heavy bleeding again. He went to work and almost fainted, and his mother drove him to the ER. They gave him two units of blood because his hemoglobin count was half of what it should have been. And then we spent 11 night and 12 days in the hospital. He was given an IV to give him more blood and steriods. He was taking steriods by mouth. He's been taking Asacol ever since and Ultram for the cramping and Prednisone. Nothing was working. He wasn't healing fast enough. He just kept bleeding. He went on a clear liquid diet and lost an additional 20lbs. He was stuck so many times with needles and IVs that his arms looked like he was a crack junkie. It finally came down to treating it like it was Crohn's Disease and he got a Remicade infusion. And that finally seemed to work. He was given some more potassium and sent home, but still very weak. He...he looked like those pictures you see of starving children. His arms and legs were too skinny and his butt was bony and he couldn't climb stairs. It broke my heart. He still kind of looks like that now, even though it's been almost 3 weeks since we left the hospital.
At first, we thought was on his way to a slow recovery. Finally! He was gaining a little weight back, he could eat again! He devoured food (in small amounts, though) and had a better attitude. In fact, he was scheduled to return to work this week. But then he started bleeding again. The cramps were back even worse. He had to have two units of blood the other day because he looked like a ghost. He has trouble walking short distances again.
We saw the doctor again today and he thinks he might have C. Difficile. If it's not a C. Diff or other infection....they're talking about surgery. And I'm scared for him. He's 25 years old and he's been through so much. I have been there for him every single moment and it's horrifying. This disease is...I can't find the words. I keep a smiling face on to support him, but I cry the few moments I get alone sometimes. I don't want him to have to live with a colostomy bag at so young an age. It's just breaking my heart.
I just needed to get that out. I feel so helpless. I do everything I can for him, but nothing seems to make him better and I want to scream at the sky and just have him feel normal again for one more day! Please!
It's so sweet of you to be sticking by his side and be so supportive. I have no doubt that it's tough though and I'm glad you found your way here.
