My life is going by and I'm just laying here day after day, month after month. In and out of the hospital, I'm only able to stay home since my doc has given me meds to deal with the pain and constant, severe nausea. I had my first Remicade treatment and felt great but only for a few days. Then right back to agony. I have my second Remicade in 2 days and hope to god it works for a bit longer. I've gotten all sorts of advice and I even had someone on this forum question my diagnosis of Crohn's and Rheumatoud arthritis because I am basically unable to eat anything that isn't soft and white. Can't eat veggies, or fruit or meat or much of anything unless I want to be back in the hospital. Anything I eat just wants to come right back up for the past 8 months. I'm frustrated and seriously wonder if this is going to kill me. How much longer can I go on like this and continue to live? Anyone else feel like they are going to die an untimely death from crohn's/ colitis? I just want to be able to do things like clean the kitchen, cook, drive, go out for dinner, go to a movie, take the dogs for a walk, go on a hike, go to the grocery store. All the things well people take for granted, just as I did before I became ill. I would not wish this illness on my worst enemy:-(
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Feel like I'm not gonna make it:-(
- Thread starter Crohnaroideramasis
- Start date
ekay03
My dog has hands!
Crohnaroideramasis, hello and welcome. I know how you feel. It is very painful and sometime it feel like you are gonna die, but that is very rare. I havent looked at your other posts so I dont know much about you. If you are under a doctors care, you are gonna make it. I know it feels really bad. Do you have any pain medication? It is a crappy disease we have, isnt it? Hang in there sweetie, you are no alone
It's like hearing my own story
Boy have I been and most times still am where you are. I have the vomiting issue as well my doc has me on every antiemetic I know of my legs and hips are literally numb from injecting phenergan since I can't keep the pills down and suppositories well you get it. If I don't get it controlled then off to er usually by ambulance because I dehydrate so quickly. I have no veins left so on Wednesday I am getting a port put in so I can start the remicade the following week and so the next time I get dehydrated and my bp tanks they don't have to do an emergency central line.
My point is I know how you feel I don't get out of bed much anymore because I just don't have the energy. I have a bedside commode in my bedroom because it is to many steps to the bathroom. I too just want to be able to clean the house or go grocery shopping and be a better wife for my husband. It sucks and people without direct knowledge don't get it but I do. I get it so just hang in there email me if you want to talk more Lord knows I could use a friend too. Remember remicade is not an instant fix it takes time to build up and suppress your immune system
My email is fozzydas@yahoo.com hope your feeling better soon
Boy have I been and most times still am where you are. I have the vomiting issue as well my doc has me on every antiemetic I know of my legs and hips are literally numb from injecting phenergan since I can't keep the pills down and suppositories well you get it. If I don't get it controlled then off to er usually by ambulance because I dehydrate so quickly. I have no veins left so on Wednesday I am getting a port put in so I can start the remicade the following week and so the next time I get dehydrated and my bp tanks they don't have to do an emergency central line.
My point is I know how you feel I don't get out of bed much anymore because I just don't have the energy. I have a bedside commode in my bedroom because it is to many steps to the bathroom. I too just want to be able to clean the house or go grocery shopping and be a better wife for my husband. It sucks and people without direct knowledge don't get it but I do. I get it so just hang in there email me if you want to talk more Lord knows I could use a friend too. Remember remicade is not an instant fix it takes time to build up and suppress your immune system
My email is fozzydas@yahoo.com hope your feeling better soon
Hello to you both and very glad you found us. Like ekay says, there are many of us who can empathise on here. I'm sorry if you've had any comments here which have been hurtful. Sometimes people have very strong feelings about diet, for example, and though well-meaning, can be a bit too adamant.
I wish you both every success with the Remicade and hope you'll keep us posted. After three infusions, I am feeling 'normal' for the first time in over a year.
I wish you both every success with the Remicade and hope you'll keep us posted. After three infusions, I am feeling 'normal' for the first time in over a year.
- Location
- Nottingham, UK
I don't think anyone was questioning your Crohn's diagnosis. They were just concerned that you might have something else going on besides active inflammation. For example you could have extreme narrowing from scar tissue, which drugs can not help with. Have you had anything like a CT or MRI scan recently to check for narrowing?
DustyKat
Super Moderator
Hey hun...:hug:
My daughter went through a similar experience to you and we did come within a whiskers breadth of losing her, she was undiagnosed at the time. I hope the Remicade does bring you lasting relief but I am concerned at your symptoms. Since your disease is in the ileum I would be concerned about either of the following...narrowing, perforation, fistula and/or abscess. Have any or all of these complications been recently ruled out?
Dusty. xxx
My daughter went through a similar experience to you and we did come within a whiskers breadth of losing her, she was undiagnosed at the time. I hope the Remicade does bring you lasting relief but I am concerned at your symptoms. Since your disease is in the ileum I would be concerned about either of the following...narrowing, perforation, fistula and/or abscess. Have any or all of these complications been recently ruled out?
Dusty. xxx