I have Crohn's disease. At my last visit the disease was moderately active and so I have continued to go forward without medication and using diet to control symptoms. The diet, which consists of mostly organic fresh food is very strict. I have no more than 5 carbs daily and rely on meats, nuts, seeds,and vegetables along with some low carb fruits. As long as I stay true everything is good. If I accidentally ingest something I shouldn't all hell breaks loose. The nice thing about Remicade was that I could eat anything, anytime, and anywhere. Now I have to be extra careful. Some of the foods I could tolerate with Remicade I can no longer eat and habits are hard to break.
I have been struggling with some pretty serious all over body pain and arthritis but I have my pain medication system down. The best drug that helps is ibuprofen but since that upsets Crohn's I only take it every 3rd day. It pretty much goes like this: Tramadol one day then Tylenol then ibuprofen and then repeat. As long as I can keep the pain under control I am OK. If I start doing the, gee I feel great I don't need anything today, thing, I will pay the following day with pain that hits so deep I can hardly move. I have been told I have osteoarthritis which is in my fingers and back and as for the other there's the psoriatic arthritis and Crohn's arthritis. In order to control the psoriatic and/or Crohn's arthritis it means going back on medication which I am not willing to do yet. However, if things morph out of control I will do what I did before and that is to use the medication for as long as I can then go off and pray for the best. I just can't see myself on these medications long term.
Part of the reason I am being extra careful is one of the people I infused with at the hospital got lymphoma. Young kid. Just 23 years old. She's in remission, but what a long battle. Now she can't take anything for her disease which got to me thinking: maybe it's better to use this stuff for short bursts then go off and see how long you can go rather than be on it for years at a time. I know there is no option when you get really sick and I know how really sick you can get. But when you have moderately active disease are the heavy guns really worth the risk?
I dunno.
If you have an autoimmune disease, what are your thoughts?
#crohns #ibd #uc
I have been struggling with some pretty serious all over body pain and arthritis but I have my pain medication system down. The best drug that helps is ibuprofen but since that upsets Crohn's I only take it every 3rd day. It pretty much goes like this: Tramadol one day then Tylenol then ibuprofen and then repeat. As long as I can keep the pain under control I am OK. If I start doing the, gee I feel great I don't need anything today, thing, I will pay the following day with pain that hits so deep I can hardly move. I have been told I have osteoarthritis which is in my fingers and back and as for the other there's the psoriatic arthritis and Crohn's arthritis. In order to control the psoriatic and/or Crohn's arthritis it means going back on medication which I am not willing to do yet. However, if things morph out of control I will do what I did before and that is to use the medication for as long as I can then go off and pray for the best. I just can't see myself on these medications long term.
Part of the reason I am being extra careful is one of the people I infused with at the hospital got lymphoma. Young kid. Just 23 years old. She's in remission, but what a long battle. Now she can't take anything for her disease which got to me thinking: maybe it's better to use this stuff for short bursts then go off and see how long you can go rather than be on it for years at a time. I know there is no option when you get really sick and I know how really sick you can get. But when you have moderately active disease are the heavy guns really worth the risk?
I dunno.
If you have an autoimmune disease, what are your thoughts?
#crohns #ibd #uc
RSS Feed
