Hello, my name is Kim, I’m new to the site but not to having Crohn’s. I’ve had Crohn’s for a liitle over 25 years now. I was diagnosed when I was 16. Up until last November it has been what I would call mild, have had several flares but never in the hospital, no surgeries yet either. I had a rebellious stage where I did not take any medicine for about 3 years when I was in my early twenties.
But with that said since Nov I have been in the hospital once for 4 days and two other times in the ER. I was going to have surgery but my GI doctor wanted to try to up my meds and Humira. She doesn’t like to cut on Crohn’s patience’s so we are trying to prolong that, but I think we have hit that point.
Since Nov. I have had 4 CT scans, 5 different xray, HIDA scan, blood tests, colonoscopy, monthly B12 shots, I have only been off prednisone maybe two months since Nov. In Nov I was on the highest level I have ever been on 6 pills a day, 10 mg each = 60 mg. My last ER trip was 22 July and still on 40 mg prednisone right now. The Humira doesn’t seem to be working either.
When I flare my blood work is all normal, (I know it’s weird) so the only way to tell what’s going on is CT scan/colonoscopy. And we all know how fun those are….
I am also backwards, I am always constipated. I will going a week or more at a time with little to no BM’s at all. It is so uncomfortable and painful. I take Mirax twice a day, Activia, exercise, drink tons of water, nothing seems to help. I have to now give myself enima’s. My doctors is now referring me the University of Iowa City Hospitals. Which is good, I have been there before, but I’m afraid it’s time for surgery. I can only hope if I do have surgery I will get lucky and be in remission for several years.
I’m very lucky and have a very supportive husband and even my children 6 and 10 are very good about my disease. I pray each and every day they don’t get it. Every time they have a tummy ache I worry. I am also very lucky to rarely miss anyone work. But since Nov I have…. I am also blessed to have a great employer. When I was in high school at 16 and first diagnosed I missed a lot of school, but up until lately I have been grateful to be so lucky.
I started reading on this site since Nov. I’m am not comfortable talking about myself or blogging (this is new to me). But some of the stories are inspirational and relatable. Since I have been typing, I have felt a great deal of relief just to get it out/down on paper….
It’s nice to hear what is working or not working for people and know that we all can relate to each other. It’s so hard to explain to people sometimes and all the procedures they don’t understand.
Thank you for listening.
But with that said since Nov I have been in the hospital once for 4 days and two other times in the ER. I was going to have surgery but my GI doctor wanted to try to up my meds and Humira. She doesn’t like to cut on Crohn’s patience’s so we are trying to prolong that, but I think we have hit that point.
Since Nov. I have had 4 CT scans, 5 different xray, HIDA scan, blood tests, colonoscopy, monthly B12 shots, I have only been off prednisone maybe two months since Nov. In Nov I was on the highest level I have ever been on 6 pills a day, 10 mg each = 60 mg. My last ER trip was 22 July and still on 40 mg prednisone right now. The Humira doesn’t seem to be working either.
When I flare my blood work is all normal, (I know it’s weird) so the only way to tell what’s going on is CT scan/colonoscopy. And we all know how fun those are….
I am also backwards, I am always constipated. I will going a week or more at a time with little to no BM’s at all. It is so uncomfortable and painful. I take Mirax twice a day, Activia, exercise, drink tons of water, nothing seems to help. I have to now give myself enima’s. My doctors is now referring me the University of Iowa City Hospitals. Which is good, I have been there before, but I’m afraid it’s time for surgery. I can only hope if I do have surgery I will get lucky and be in remission for several years.
I’m very lucky and have a very supportive husband and even my children 6 and 10 are very good about my disease. I pray each and every day they don’t get it. Every time they have a tummy ache I worry. I am also very lucky to rarely miss anyone work. But since Nov I have…. I am also blessed to have a great employer. When I was in high school at 16 and first diagnosed I missed a lot of school, but up until lately I have been grateful to be so lucky.
I started reading on this site since Nov. I’m am not comfortable talking about myself or blogging (this is new to me). But some of the stories are inspirational and relatable. Since I have been typing, I have felt a great deal of relief just to get it out/down on paper….
It’s nice to hear what is working or not working for people and know that we all can relate to each other. It’s so hard to explain to people sometimes and all the procedures they don’t understand.
Thank you for listening.
