I’m Cassie, 24 years old and from a small town in Iowa. I have UC and I’m preparing for surgery so I’m interested in talking to others about their experiences.

Cassie: Best of luck to you. I'm a 45 year old dad (two daughters ages 20 and 18) and I had UC for 15 years before undergoing two-step surgery. The first step was 11/10/06 and the take-down was 1/12/07. I developed a wound infection after the second surgery but otherwise everything went very well. Are you having a two-step procedure?

This is major surgery so be prepared. You'll feel awful for the first few days, especially after your first surgery. The nurses will encourage you to get up and walk. Do it. It is very important and will help speed your recovery.

Feel free to email me directly if you have any questions or just want to talk. Everyone on this site is terrific and the information was very helpful for me. You aren't alone. Best of luck and you'll feel better after all the surgery is complete. One more thing: after surgery don't measure your progress day to day, go week to week. Some days will be good and others not so good but just six weeks after my first surgery I was able to fly to Spain to visit my daughter. She is spending her junior year abroad. We traveled the country and I had zero problems.

Kevin

Hi Cassie, I live in California but I dont know anybody else who has had the same illness and surgeries that I have. I just found this site yesterday and read all kinds of stuff it was really eyeopening to see other people talking about everything I talk/think to myself about. Anyways, I had my surgery, Koch pouch about 10 years ago. It was hard adjusting, getting used to going to the bathroom different, recovering. healing, took alot longer than I wanted, but you just have to be patient with your body.
What doesnt kill you makes you stronger, especially when your still young like you are.I was 25 when I was diagnosed. It feels like it was yesterday not 13 years ago.

Hi Cassie. Welcome. I'm 38 and was diagnosed with UC when I was your age. You're preparing for surgery? (you don't say exactly what kind). It's tough being in your 20's with this disease. I was always worried about where the next washroom was... No fun.

I had my Takedown (which basically means removing ostomy bag, sewing up intestine and letting it go to work) a week ago. People do this in various stages. I had 3 surgeries, some have 1 but I think the most common is a 2.

Don't freak out when you read through some the posts. I know I did... I would read about the horrible things that happened and problems people were having and was sure that all of those things would happen to me too. Guess what? They didn't... I only experienced the things the majority of people do. There certainly risks and pitfalls but I think the majority of people live normal fulfilling lives with little to no problems.

This site is so helpful. You can always find someone to talk with about your issue or give you some reassurance.

Good luck to you and look forward to seeing you around the board.

I have only had UC for 2 years. I am scheduled to have step 1 of 2 on Tuesday. My surgery will be at Iowa City-how far are you from there? This site has been a wealth of information for me. Everyone is great. It is nice to be able to talk with people who know exactly what you are going through. Have you scheduled surgery yet?

Thanks for the support. I get confused with all the different surgeries and names they use, but the technical name would be ileal pouch-anal anastomosis. It would be done in two parts. My surgery isn’t scheduled at all yet. I’m still discussing the right time with my parents because they will be the ones taking care of me. We are thinking about waiting until this summer. Brice, I’m really close to Iowa City, probably 2 hours but only an hour from my parents house. Is that where you have doctored? How do you like it? My doctor is in Ames and that is were I live now, but I went to Mayo Clinic in MN for a second opinion and that is where I will have my surgery done.

Hi Cassie,

I have just recently found this site as well. I was diagnosed with UC in Oct 2005 and after two years of not being able to get it under control I was forced to have the surgery.

It's great that you have time to think about it and prepare yourself for it, it will help things go a lot smoother.

As Kevin mentioned, you'll feel pretty rough after the surgery but that is short lived. If you cooperate with the nurses and set your mind to getting back on your feet it won't take long at all.

Getting use to the stoma and changing the appliances will also take time but after a few changes you'll start to feel more comfortable with everything. As for the Jpouch, it too will take time to get use to. I have had mine now for 9 months and you have to use the trial and error method to find the foods that work for you.

After your take down (final step), measure your progress in weeks and months rather than days as you will have good days and bad days but the good will keep getting better and more frequent as time goes by.

Best of luck to you!

christine

Cassie-

My GI is Dr. Summers in Iowa City, he is the director of the digestive disease department. He is great. The surgeon he referred me to is Dr. Metcalf. She is very direct and tells you like it is, which I would rather have. I was going to go to Mayo's because my mom's GI is there but they are not covered by my insurance. I have had very good care at Iowa City and have been happy with them so far. Please feel free to contact me anytime. I will have more information to contribute after my surgery.

Cassie,
I was a member of this site way back in 2000 when it was real new. I decided to check it out again to see if I could help. Many helped me when I went through what you are going through. I had UC for over 20 years during which I was on medications that got stronger and stronger. When prednizone would no longer help me control myself, I had the 2 step surgery. It was on July 22, 2000 and the take down was about 31/2 months later. Here is some advice: If you are on predinzone, get off it as soon as you can. They are a very wicked drug. Get lots of rest before the number 1 surgery. Cut your toenails because you won't be able to bend over for a few weeks.... Get up and walk as soon as possible... it hurts but it will get you back on your feet quicker than anything. Have someone bring you your food in the hospital... especially if the food sucks. Soup is wonderful. I lost over 40 pounds in a few weeks. When you have surgery 2, you need to get yourself some ILEX. It is a moisture barrer and it is wonderful. You will going #2 quite often at first and you will get really sore, I mean really really sore and ILEX will take care of the discomfort. After 6 1/2 years, I still use ILEX after my morning shower and before I go to bed at night.
You are going to have major surgery, listen to your doctors and nurses, drink lots of water, and get lots of rest. You will be fine. Today, I eat anything I want, get on an airplane every week for my job, and I am doing great. Wish I had done it much sooner than I did. Take care

Cassie,

Forgot to tell you that I was born in Cedar Falls, raised on a farm in Oelwien, moved back to CF when I was in the 5th grade and graduated from CF High. Left home a week later and headed West. This is home now!