No Colon Still Rollin (I want that t-shirt from a video interview I watched on here)

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.

Wendy behind the wheel

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.

wendy in hospital

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.

wendy after surgery stoma

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

26 thoughts on “No Colon Still Rollin (I want that t-shirt from a video interview I watched on here)”

  1. Wendy!!!!

    Thank you very much for sharing your story. I am really happy that you are moving forward with these big decisions and more than anything, congrats on setting some awesome goals for your future!!!! (You best be having a camerwoman (or man if you like…heck get your husband) taking pictures of you running the marathon!!!

    Also, I wish you the very best on October 9th. And as you can see…this story is many many weeks late in getting published to the site. That is ALL my fault, as I’ve been far from good wifi since early August.

    So check this out… I had a little freak out session while posting up your story, as I was wondering how you are only 44 years old in your original bio but now 51…(had to get my brain out…) and you still look the same in all the pictures from your original headshot:))))

    SO…what I’m saying is…a BIG thanks for keeping us updated along the way over all these years.

    I went digging into the archives for the original “No Colon Still Roling” stuff… and sure enough that was introduced by our buddy Curtis from down in Southern Cailfornia quite a few years back. here is a link to all his stories he published over the years:

    And, the video of the meetup with curtis is here:

    Wendy….thank you again for sharing how you are doing! Wishing you the very best:))))


  2. Wendy,

    You are very brave-both to share your story and to be proactive. My husband’s cousin has UC and had his colon removed. He is an active hiker, and is now doing very well. He did have a hernia post-surgery, but once that was dealt with, has been so much better than before. I also have UC (his experience – before surgery- terrified me when I was diagnosed). So far SCD and Mesalamine has kept my condition under control, but his (and your) example helps me know this is one possible option. Best wishes to you for full healing, and a successful marathon.

    1. Thank you!! Wow, re-reading that is a bit embarrassing because my phone autocorrected and I didn’t realize it. I have a laptop now. Should be better in the future. I got a device that fits on my stoma now and the poop output slowed down. I go five hours without needing the washroom. I get the take down surgery at Mayo in a couple of days. Thanks for posting again!

  3. You are a strong woman, dont let anybody tell you different. I had colitis for 10yrs I had my colon removed in 2005, and got a j pouch. I have had it for 14 yrs, i am having some issues now and will be getting a K Pouch in 6 weeks. Good luck to you, I hope all goes well for you. People that dont have this horrible disease have absolutely no clue what we go through.

    1. I know! That is why it is so nice to vent here. You all know. I will have to google k pouch. Thanks for the encouragement. Best of luck with thatvk pouch.

  4. Wendy, I had almost the exact thing you had, almost died, they performed a Proctocolecomy with removal of entire colon. it was Dec 2015 now living with ileostomy. For me it is so much better, no pain now, no drugs so far. I was wondering, when you say ‘take down’ you mean reversal? This is impossible for me but did they say anything about the control of your output will have after surgery.
    Best of luck to you..Candi

    1. I read control of your output is different for each person. So I feel I will not know until it happens what it will be like for me. My bag emptying slowed down a lot since I posted this. Every five hours now and if I don’t eat it almost stops. I am willing to suffer the consequences at this point. Thanks for the reply. My next surgery is in 7 days. I am sure it will be bad at first.

  5. Hi Wendy! My sons story is exactly like yours before this jpouch! He is 3 years out in October and he is doing fine. He is not taking any meds. Has no more joint pain and no abdomen pain.The only thing that bothers me is he can’t gain weight. But that is better than his life before when he lived in the bathroom and weighed 90lbs. Good luck I wish you the best.

  6. Hi Wendy, thank you for sharing. I have been fighting UC for 10 years and have now exhausted a long list of drugs. Currently on a double dose of Humira, 6mp and prednisone. The prednisone has:taken some edge off the pain but I am ready for my ileostomy scheduled for Oct 28th. Yes I am scared but yes I am ready. All the best to you.

  7. Thank you! Yes. I do feel so much better. Everyone at work says my coloring is much better. I look so good etc. I do have a lot more energy anyway. The logistics of using the ilyostomy bag was difficult but it will be gone soon. And if I need one again I will understand how it works. I am glad to hear your son is doing well!

  8. Wendy thank you for that information, i’m considering the same operation, you’er not inconveniencing anybody you’er helping.
    We’re all Adam’s soldiers and can use all the help we can get.
    Ifeal the same way as you do about Adams site he is a God sent individual for all of us and people who don’t understand this disease and the problems,please keep us updated on your progress.
    You really don’t how many people you and Adam are helping Thank you both best wishes
    Larry Jones.

  9. Thank you for your encouraging words. Best of luck to you whatever you decide to do. It was a very difficult decision for me, but I am glad I did it so far. Every person is different I think. Best of luck.

    1. Wendy thank you for returning my message I ‘m skeptical about the surgery but i think elimating as much of the damaged colon can only help. But more importantly awareness and research can do more to help us.please let me know anything that will be helpful or any problems with the surgery you have best wishes. Also thank you Adam.

  10. The operation was harsh for me as it would be for anyine I guess. I got in as best shape as possible before it, maintained a good weight and worked out a lot. I watched hours and hours of youtube videos so that I could see different reactions from people. The bag is very difficult to get used to. I thought for a long time(about 7 or 8 weeks after surgery that I would never get better but I did. O feel the best I have felt in years. Right after surgery it hurt to sneeze, laugh, move, but I made myself walk a lot and I am very good now. So good I am worried about the j-pouch sergery

    I have

  11. I mean take down surgery is what I am worried about. I had the j-pouch surgery the same time as the colon removal surgery.

  12. Hey Wendy, hope your takedown surgery went well. Mine was over 8 months ago and I am still adjusting to the new equipment. It is a difficult process. But even the worst days were better for me than the ileostomy.

    Be super patient with yourself. Visit the J-Pouch forums for good advice.

  13. Wendy

    I joined the No Colon still Rolling club August 14th. Got to a point where I couldn’t go on and nothing worked. Was flaring for about 3 months before hand. Lost 50lbs during that time, hemoglobin down to about 7. Finally hospitalized and they pretty much said the gig was up. Either get it taken out or die from it. I chose to live. Because I was so sick before my operation my recovery has taken a little while. Need 3 surgery’s total vs 2. J pouch and rectum removal is scheduled in Dec and take-down 3 months later. Still not 100% but getting there. Got the ileostomy thing figured out This is a marathon not a sprint. I hope your surgery went well. Keep us posted.

      1. I just had pepperoni pizza for breakfest I’m telling ya people you can enjoy life again “ just do it “ Wendy you did the right thing !!

  14. Thanks. It isn’t overnight magic, and doesn’t work for everyone, but it is better for me I think. A guy at my work lost his job because of this and wouldn’t get the operation. I am still employed.

    1. Yeah I wouldn’t be working still if I didn’t get the operation , a lot of people couldn’t handle it . It did almost die on my takedown , had surgery on a Friday and two day later had emergency surgery to fix the leaking into my abdominal cavity ! Fuck woke up early Sunday morning with the poop again attached to my stomach, so I had to wait another three months to do the take down again and it went good . I had five surgery’s total ! Yep !

  15. Wow. You suffered a lot for it. But as you say, you are still employed. The other guy was or probably IS now bankrupt no job wife super angry. He was in counciing last I talked to him. I suffered for ten years then had it removed.

    1. I’m sorry to hear that sad . I went five years with UC it just got too severe . Hope you’re better , life has improved for me a great deal . It for sure , will never be the same . But don’t regret it . living with UC was hell .

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