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Hi. I am 32 years old, and was diagnosed with crohns and fistulae since 2005. I've been on humira and methotrexate and have been doing well controlling my symptoms for a few years now. However, my rectum contains areas of low grade dysplasia. My doctor recommends surgery to remove the entire colon, anus, and rectum to remove the risk of cancer and the dependence on drugs.

I really don't want to have surgery.  Is it really worth it? Anyone out there in my situation or have been through it?

Anyone out there who has crohns, colon cancer, AND have had a full colectomy?
Anyone out there who has crohns, no cancer, but had a full colectomy?
Anyone out there who has crohns, and low grade dysplasia?

Help please!!!!

 Reply posted for 1stigmata1.

I am going to start another thread - but I would appreciate any input.  My situation is a little different but outcome will be the same...IPAA Godwilling.  I have DALM -- after 20years UC generally quiescent.  I just found out a week ago -- and honestly, I need some hope...

 Reply posted for 1stigmata1.

I am going to start another thread - but I would appreciate any input.  My situation is a little different but outcome will be the same...IPAA Godwilling.  I have DALM -- after 20years UC generally quiescent.  I just found out a week ago -- and honestly, I need some hope...

 Reply posted for david0912.

If what is going on near your rectum is dangerous you might wanna consider it. I had it done in 2008. It was a 2 part procedure. After the first surgery my appetite was back like crazy!!! It cured me my friend. You just want to do it while your healthy because of the recovery process. After the second surgery my b/m's were a lot, but slowed down as time has passed. I have the J-Pouch.

 Reply posted for david0912.

Hi, I'm now 32 years old and had been diagnosed with colitis when I was 14, at 16 ended up having emergency surgery and had to have the entire thing removed with the exception of my rectum. I have since had 2 more surgeries (one to create what was called a J pouch, and one more to attach the pouch to my rectum. After having an illiostomy for 3 years not having to worry about the ostomy pouch and stigma I mentally dealt with has been amazing. I will say though, that even with the ostomy my life was remarkably better. The pain, the blood, the fatigue, everything proved after surgery. Life changes are going to have to be made, but cutting alcohol down to very light/none, less caffeine, no jutts, popcorn and the such. But my life is amazing now. I have had Jo colon for half my life now and this half has been amazing health wise compared to the first half. (PS. If any one has questions about anything please feel free to contact me. justdonovan01@gmail.com

 Reply posted for derek71984.

Hi

I was diagnosed with UC in 2007 and soon became steroid dependent. No other meds were working and use of antbiotic was very common. Daily bloody stools many times no control over them, life had become miserable. Got my J-pouch surgery done in 2010 and enjoying a much much better quality of life since then. Recently I had  severe pouchities but after taking VSL 3 it is under control. I will suggest anybody with UC and not responding to meds to go for surgery.

 Reply posted for gordon.

I had surgery about 30 years ago.  The best thing you can do is just be there and be supportive.  It's certainly something she has to work through.  However, having a supportive family is the biggest help.

 Reply posted for david0912.

I had ulcerative colitis starting as a teenager.  It went into remission in my 20s, which I now attribute to smoking marijuana.  When I made the decision to return to college, I stopped using marijuana.  My symptoms returned with a vengeance.  I wound up having my entire colon removed.  At the time, I had the option of a Koch Pouch or a J Pouch.  After a lot of research and talking with a number of patients, I opted for the Koch Pouch.  I have never been sorry.  I felt better after the surgery, and things got significantly better over the years.  Occasionally, I'll get an inflammation in the pouch, which is fairly common.  Antibiotics take care of it fairly quickly.  I have heard that there seems to be more incidence of "pouchitis" with the J Pouch.  However, the Koch Pouch had a fairly high failure rate at the time.  I did have to have mine redone one time.  I've had no major problems since, and it's been almost 30 years.  It was definitely the best decision i could have made.  My surgeon left my rectum in as he wanted me to have the option of a J Pouch should I want that.  After about 15 years following surgery, I began having a lot of pain the rectum, so had it removed.  All is well.   Certainly you have a lot to think about.  Just know there's a light at the end of the tunnel.....and a lot less pain and discomfort.  Any questions I can answer, just let me know.

 Reply posted for david0912.

I was diagnosed with Chron's more than 10 years ago after suffering from severe symptoms such as stomach cramps, diarrhea and blood in my stool. Going through a 10-month medication was really difficult and I got frustrated that it didn't provide any progress with my condition. I was advised to undergone an ostomy surgery, it was really a hard decision to make but I have no choice. I have a permanent stoma attached to my body now and despite of all the difficulties I had endured for the past years, I am still very thankful and I learned to appreciate the value true of life. My stoma bag really saved my life!

 Reply posted for derek71984.

My wife is going to have surgery this year.  I am very, very concerned and want to give her the very best care that I can.  Can anyone help me understand what I should be prepared for?

Also how do we prepare for the surgery? What supplies should I have on hand?  I'm very worried about the emotional effects, what are the best ways to support her.  I'd like to find any support groups or people in the area of Milford MI but have not been successful. 

This will be a life changing experience that we both need to be prepared for.  Any advice is appreciated

 Reply posted for derek71984.

For me, my quality of life improved tremendously. I could go places without having to worry about having a bathroom near by. I am five years after the surgery, and I am down to 2-3 times a day, and not getting up at night. Which is nothing. For me, the surgery was the best option. I would recommend it. It has changed my life for the better. I remember the remicade worked for me for about 3 weeks, then it went right back into being as bad as it was before. Again though this is my experience. And from what I've talked to who also had the surgery, they had similar experiences as mine. It gave me my life back. 

 Reply posted for david0912.

David, 
I had a total colectomy. I was diagnosed with UC and it was very aggressive and I was miserable, going 10-15 times a day and it was awful. I finally decided to take the doctor's recommendation of the surgery and j-pouch option. 5 years later, I couldn't be happier. I played my senior year of soccer as a captain, joined a volunteer fire department, and am about to finish a bachelors degree in college for Criminal Justice. For me, surgery was the best option. I had an ostomy for about 6 months while my body healed, and after about 1 month, I was an expert at the ostomy. It was easy to use and change, and hide as well. No one knew I had it unless I told them about it. This is a very brief explanation of my experience, and if you have any questions please feel free to email me at jpaschen@hotmail.com with any questions you have and I'll answer to the best of my ability and knowledge.

I am also in the same spot as you, i was diagnosed with uc 13 years ago. I have been on all sorts of meds, from prednisone to remmicade .. But right now it seems like nothing really helps to keep it under control. So i am also thinking about  having surgery to improve my quality of life.. That's my big driving factor is to have a much better quality of life after surgery than i am right now living.. Its hard to go day to day seeing just how im going to feel and if i can do certain things with out worrying all the time ..