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
I’m 51 years old and the mother of three with a husband. I’ve written several stories over quite a few years on this site. And in 2019 I decided towards surgery.