Hi,
I want to post my story about my husband's journey with Ulcerative Colitis, he is in the middle of a bad flare and he is in the hospital and will be in for awhile longer. His first symptoms (blood in stool) started about 3 years ago but every time the colonoscopy was scheduled (2 months later) the symptoms were gone. His symptoms always came at the same time of the year and lasted about 2-3 weeks. During this time he had some pain in his sacrum off and on that continued into the present. We always thought he had pinched a nerve.
Fast forward to 4 months ago when he started his yearly symptoms. Unfortunately, his symptoms were worse (real strong sudden urges, lots of trips to the bathroom for diarrhea, and lots of blood). And after a good 2 months of thinking it would go away he got another colonoscopy right away this time (new state new insurance) and the doctors were unclear about whether he had Crohns or UC because it showed 6 inches of the descending colon was flared and then patches of inflammation on the ascending colon which was indicative of Crohns. He started an enema (forgive me I can't remember the name) that acted like Tylenol. This lessened his symptoms for 2 days and then they came back stronger.
4th of July weekend we went away camping and my husband got worse then I had ever seen him. His back pain became unbearable and because we were camping he had to walk to the bathroom and twice didn't make it. Thankfully, there were showers and then he ended up driving up to the bathroom and sitting in the car until he had to go. He was in the bathroom constantly and was barely able to rest in the car. I woke up early and we hightailed it the 5 hours back home where I dropped him off at the ER so I could get our 5 year old son home. At this point my husband couldn't walk.
He has been in the hospital since Sunday. Being in the hospital over a holiday weekend isn't fun since he had to wait until tuesday to get any tests run. The colonoscopy showed severe inflammation on the left side, patches on the right, and a clear transverse which made it all confusing. Finally, the GI doctor along with pathology diagnosed just UC and sadly it affects the entire colon and rectum even the transverse which wasn't clear but inflamed as well just not as bad. This has clearly spread from the initial 6 inches from teh colonoscopy 1. 5 months ago. They started him on a liquid diet when he got there and then on Tuesday afternoon started him on IV steroids and enema steroids. Today, his back pain was much better (finally) but his stool symptoms have gotten worse and much stinkier. The rheumetologist said that he has inflammation of the sacroilliac joint and that the steroids will help.
The GI doctors said that the steroids might take a full week to to start impacting his inflammation. And if they don't they want to give my husband Remicade. My husband's emotions are so low. He's got a pic line in now so that they can feed him through the IV. He's hoping that this helps him feel more energized. His hands, feet, and legs are really swollen- not sure if that's steroids or just the saline solution or something else.
This is so hard. It's terrible to watch him suffer so much and to give up so much of dignity while in the hospital. We are not a medicine based family. And all of this is so overwhelming for both of us. I keep going from feeling hopeful that he will go into remission to feeling like this is never going to end and he is going to give up on his life. It's tough because I know that he's not dealing with something like cancer and that people can and do go on to lead normal productive lives but it feels like a death sentence- especially when he spends 95% of the time on the toilet and 5% in bed and he's lost so much weight and he feels sick all the time and there doesn't seem to be relief from the steroids. How long do these take to kick in? And how do I help him?
What if the steroids don't help? What if nothing helps. How do you all deal with this, how do you get through terrible flares? What can you tell me about medicine that I need to know so I can advocate for my husband?
He's a science teacher and has always taught in urban schools. He is seriously thinking about a career change but he is afraid for his insurance. The information about IBD is so conflicting. One sight says eat this another sight says don't eat that but you can eat this. Doctor's say that food plays no part what so ever nor do food allergies (husband is allergic to milk) and that stress doesn't play a part either.
It's hard to imagine that these things don't play a role. It's just all so confusing. Thanks for letting me tell my story.
I want to post my story about my husband's journey with Ulcerative Colitis, he is in the middle of a bad flare and he is in the hospital and will be in for awhile longer. His first symptoms (blood in stool) started about 3 years ago but every time the colonoscopy was scheduled (2 months later) the symptoms were gone. His symptoms always came at the same time of the year and lasted about 2-3 weeks. During this time he had some pain in his sacrum off and on that continued into the present. We always thought he had pinched a nerve.
Fast forward to 4 months ago when he started his yearly symptoms. Unfortunately, his symptoms were worse (real strong sudden urges, lots of trips to the bathroom for diarrhea, and lots of blood). And after a good 2 months of thinking it would go away he got another colonoscopy right away this time (new state new insurance) and the doctors were unclear about whether he had Crohns or UC because it showed 6 inches of the descending colon was flared and then patches of inflammation on the ascending colon which was indicative of Crohns. He started an enema (forgive me I can't remember the name) that acted like Tylenol. This lessened his symptoms for 2 days and then they came back stronger.
4th of July weekend we went away camping and my husband got worse then I had ever seen him. His back pain became unbearable and because we were camping he had to walk to the bathroom and twice didn't make it. Thankfully, there were showers and then he ended up driving up to the bathroom and sitting in the car until he had to go. He was in the bathroom constantly and was barely able to rest in the car. I woke up early and we hightailed it the 5 hours back home where I dropped him off at the ER so I could get our 5 year old son home. At this point my husband couldn't walk.
He has been in the hospital since Sunday. Being in the hospital over a holiday weekend isn't fun since he had to wait until tuesday to get any tests run. The colonoscopy showed severe inflammation on the left side, patches on the right, and a clear transverse which made it all confusing. Finally, the GI doctor along with pathology diagnosed just UC and sadly it affects the entire colon and rectum even the transverse which wasn't clear but inflamed as well just not as bad. This has clearly spread from the initial 6 inches from teh colonoscopy 1. 5 months ago. They started him on a liquid diet when he got there and then on Tuesday afternoon started him on IV steroids and enema steroids. Today, his back pain was much better (finally) but his stool symptoms have gotten worse and much stinkier. The rheumetologist said that he has inflammation of the sacroilliac joint and that the steroids will help.
The GI doctors said that the steroids might take a full week to to start impacting his inflammation. And if they don't they want to give my husband Remicade. My husband's emotions are so low. He's got a pic line in now so that they can feed him through the IV. He's hoping that this helps him feel more energized. His hands, feet, and legs are really swollen- not sure if that's steroids or just the saline solution or something else.
This is so hard. It's terrible to watch him suffer so much and to give up so much of dignity while in the hospital. We are not a medicine based family. And all of this is so overwhelming for both of us. I keep going from feeling hopeful that he will go into remission to feeling like this is never going to end and he is going to give up on his life. It's tough because I know that he's not dealing with something like cancer and that people can and do go on to lead normal productive lives but it feels like a death sentence- especially when he spends 95% of the time on the toilet and 5% in bed and he's lost so much weight and he feels sick all the time and there doesn't seem to be relief from the steroids. How long do these take to kick in? And how do I help him?
What if the steroids don't help? What if nothing helps. How do you all deal with this, how do you get through terrible flares? What can you tell me about medicine that I need to know so I can advocate for my husband?
He's a science teacher and has always taught in urban schools. He is seriously thinking about a career change but he is afraid for his insurance. The information about IBD is so conflicting. One sight says eat this another sight says don't eat that but you can eat this. Doctor's say that food plays no part what so ever nor do food allergies (husband is allergic to milk) and that stress doesn't play a part either.
It's hard to imagine that these things don't play a role. It's just all so confusing. Thanks for letting me tell my story.
.
