I am 51 years old and I have written at least two stories on here in the last ten years. This will be my third I think. I appreciate this forum for voicing my experiences. I can’t remember any passwords or profile information but I know I have them. I am married with three children. Two of my children are adults and one is twelve years old. I live in Moorhead MN and was born and lived in Canada until I was 35.
I like hiking a lot. I think not is one of the best ways to see the country/town area you are exploring. You understand the terrain when you have to walk over it, suffer it’s temperatures, receive it’s bug bites etc. I also like biking, camping, writing, painting, and cooking/baking.
Currently I have removed my colon and I am awaiting Take-down proceedure. So I don’t notive any symptoms. I didn’t know where to publish this or where to submit it as I don’t think I have UC anymore as I have no colon. I could possibly still have it though. I still have some rectum left which isn’t being used except for some mucus.
Wendy’s Story (Her Big Update)
I was hospitalized in February for UC. The doctors at the emergency room said nothing was wrong with me when I first went in, gave me tordal or whatever it was (some kind od headache medicine) and anti-nausea pills (because I was vomiting) and sent me home. To make a long story short, I became extremely I’ll. I told them I needed solumedrol and they wouldn’t listen to me. I knew this would happen. That I would become extremely I’ll so I went home to die. I completely gave up. After a while my husband got me in to the hospital emergency room again because I no longer cared. I have to fight every single step of the way to educate doctors who think they know more than I do regarding my body. I respect that because they do, however, if I state something they should listen.
I ended up spending a week in the hospital. Five days to be more accurate. I was more ill than I have ever been but I have heard many stories where people have been far more ill than myself. I guess I have a low tolerance level and just can’t take it.
I hurt so much I would check in the hospital among all the blood if my colon parts were floating in the toilet because it felt like I crapped my colon out.
After this experience I decided this would never happen to me again.
I decided to remove my colon. I called Mayo Clinic, set up an appointment, and July 16th at 9:00 a.m. the best colo-rectal surgeon in the world removed it. Dr. Pemberton of Mayo Clinic. The rest of the story here I will say how I feel about it now as I await take down surgery.
I have been on a lot of medicine but stopped treatment of Humira and Remicade. No more. I went on prednisone to stop flares. I get solumedrol through IV when I was hospitalized.
So far I don’t regret it at all.
It is a very harsh operation and difficult to overcome physically and mentally. I am not recovered yet. It is August 21st as I write this and the operation was July 16th. I return to work on the 27th of August. I don’t have enough space to explain everything. I empty stool every hour since I had the operation. My stool is like water. Every change is a different shade of brown. The only way I get any kind of viscosity is if I eat potatoes or potato chips or applesauce. Every thing else on the list of stool thickening foods I try to eat just produce different shades of brown water. Even though I use the toilet this often I prefer it to ulcerative colitis and having my colon in me. I also can’t get my device to stop leaking and I have tried many. When it leaks it burns your skin and is itchy and painful. I prefer suffering this because I had very bad joint pain all over my body. My hips were so painful I felt luke I might not be able to walk every day. Every time I stood up in public I would struggle to appear normal. I stopped running. My hands sometimes couldn’t hold a cup. The doctor would say old people have thia happen so at 51 I just thought I was old and there was nothing that could be done to help me. I did not know that removing my large intestine would cure thia pain. I feel so good despite the amount of pouch emptying and burnt, stinging skin that I plan on training for a half marathon in the Fargo Marathon next year. I get the take-down proceedure on October 9th so if there are not too many complications from that and I can get my output under control I am going to go for it. I feel so much better after removing my colon.
I understand that I could have a lot of repercussions that have not manifested themselves yet from the colon removal, and on YouTube I have read many a horror story and I am sufficiently afraid, but I chose not to live in fear and go for the best life I can get. If I have to suffer despite my best efforts and intentions, so be it. Maybe I will submit a story on here and wail and moan about it… I don’t know. I can say that I am extremely grateful to have a forum to voice my stress and experiences and explore other opinions with people that may understand my predicament. I understand that I may wind up on more drugs than I started out with and was trying to avoid. I feel though, that if I don’t try to get a better life I will feel awful that I didn’t try and I can go to my grave knowing that I did what I could to the beat of my knowledge and didn’t let fear control my decisions.
I am so frustrated that people get upset listening to anything do with my colon and my body functions. If I knew how I would start a YouTube channel and talk to my hearts content about all the details of my experiences. All the beat to you.
written by Wendy
submitted in the colitis venting area