Hey!!
I'm new to the community and I couldn't have found out about this website at a more perfect time! I'm facing a HORRIBLY hard decision and I need your expert advice!

So, I've had pan-colitis for 4 years...I got diagnosed when I was 20 and am about to turn 24! I've struggled and tried every medicine under the sun with no remission. I've tried Asacol and a myriad of other medicines at the beginning when I was extremely sick and then took prednisone for about a YEAR! I had two kidney stones, anemia, osteoporosis, in this time and tried really well to finish college, but it was the hardest years of my life! I was late to class, lost weight (until the prednisone gave me all of it back plus 30 more!) Now, I'm on Colazal 3 times a day, 150 mg of Imuran (been on it for 4 years) and tried Remicade 5 times, but to no avail! So, this past winter I met with a surgeon in Dallas, Texas, Dr. Jamison and Tulanon and decided that with my low quality of life and chance for cancer that it was the right choice! Plus, NOTHING was working, I was sick as a dog and the disease was taking my life away. I mean, I wanted to go camping, travel, be at class on time and I really want to be a teacher...but its hard when you have to battle UC! So, they put me on prednisone to help me finish up student teaching and my masters and I scheduled surgery for April 30, 2008.
Now, two weeks before surgery I had a last minute colonoscopy to make sure that I didn' thave crohns and my doctor dropped a bomb on me...not only do I not have crohns, but the left side of my colon's biopsy's came back clear. Now, I have moderate to severe disease in my right hand side and lower colon (really the worst in my rectum). So, here I am, 12 days from surgery, I didn't apply for jobs, my insurance is already pre-approved, I quit my old job, I'm moving closer to home to be near my parents, etc. and I'm faced with this huge decision. Do I keep trying to put this thing in remission and see how long I can keep it in remission, or do I just go ahead with surgery and never have to worry about it coming back or cancer? I want to have kids and get married and be a great English teacher..and I just don't know what to do! For those of you who have been through it...what would you suggest? Do you ride out the blessed wave of remission or say that surgery is probably inevitable and do it when its the most convenient time you could ever imagine? I NEED HELP!!!! Thanks so much!!!! I appreciate all the advice I can get!

Hi Anne,

Considering your sitaution you sound like you are good spirits. Listen, you are most definately faced with a difficult decision, it seems that many people are thrown curve balls right before making that final decision to have the surgery. The post below was someone else asking "when is the right time for surgery" - obviously different situation than you but same situation at the same time.

http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/6141...511080272#8511080272

We would ask you, what does your instinct tell you today, are you at peace with having the surgery? And do you in your deepest heart feel like you will always be on pills, always in fear of remission ending, fear of cancer, fear of every colonscopy. We can't tell you yes or no, but can say that with Mark, he no longer wanted to live being sick, or in fear of being sick. Although the surgery isn't the perfect fix, it improves the lives for many people - Mark included.

Stay calm, stay focused and think about how much more unknowns from UC do you want to live with? Then reverse it and ask if you want to live with the unknwons of life with after surgery? Keep your spirits high, you will have a family if you'd like, you will be a great teacher, and all that stuff, you just need to focus and take care of you right now.

Megan (typing) & Mark yapping in my ear

You still have "moderate to severe" disease in the descending colon and rectum, and you've been on prednisone since this past winter (January 2008, so 3-4 months?). You have not really been in remission for 4 years, and only a drug that you cannot take long-term helps at all. You're probably feeling somewhat better than you have in quite a while, and with your surgery so close, you are getting anxious about the pain and risks and are understandably beginning to second guess this decision.

I recommend you have the surgery April 30. On the plus side, you are currently in "relatively good" health, you have insurance coverage, you have family support, you do not have to take time off from work. These are all very important for helping you recover more quickly and get your life back on track.

I was in a similar situation 17 years ago -- 4 bad years in a row even with the prednisone, but my left colon was never really affected at all by the UC. I really wanted to avoid surgery, but my GI pointed out that "you're not doing WELL". I was anemic and running to the bathroom all the time, but I mostly accepted that. I finally consulted with experts at the Univ. of Chicago, hoping to get in on a clinical trial, but they said I had to be brought into remission first! I had the j-pouch surgery a few months later, and only appreciated how sick I had been after my health was finally restored. I would make the same decision again, especially since my pouch functions pretty well overall.

Oh, thanks, Megan and Mark, for that link to another thread which includes more info on the risk of cancer.

Something else to consider is having this surgery while you are feeling fairly well rather than having to have it as a result of very serious problems. Recovery is so much easier when you started out feeling fairly well. It is a far bigger challenge given the other scenario.

For those of us who chose elective surgery we all faced the indecision and fear that you are facing. Without a diagnosis of dysplasia or cancer, making a decision to have radical surgery is overwhelming. I think UCers often think remission can be just around the corner, and maybe it is?

If you are steroid dependent that is reason enough to have surgery, in my opinion. The long term potential side effects of prednisone outweigh the surgery. For me it came down to wanting off that drug and I have never regretted my decision.

Sue

I echo CeCe's thoughts. I had step one of a three step jpouch when I was really, really sick. I had lost 50 lbs in three months and hadn't eaten in a while and they had just started me on TPN, my heart was doing weird stuff, you get the picture...It took me what seemed like forever to recover. My second surgery (jpouch formation) was just over three weeks ago and I was out driving, walking, raking the yard etc... within a few weeks. I made it a point to really get back on my feet before the second surgery and so far, it's paid off.

I didn't have time to think before the first surgery, then I had too much time to think and get nervous before my second surgery. If you decide to have the surgery, you have many things in your favor: feeling good, you're young, no displaysia, you've got your family to help, insurance coverage... It sounds like you have really been through a rough time and as you know it's impossible to predict when another flare up will come along and how long it could last.

Good luck with your decision. I know it's hard but don't let your mind get the best of you! I drove the doctor's office crazy with all of my questions before the second surgery, but they handled it in stride just as they should.

Les

I understand your concerns. I am scheduled for surgery next wednesday, April 23. I have not had big flares for quite a few years. But a colonoscopy showed dysplasia in a biopsy. Surgeon and GI both say time to get it out. I must admit I do not feel bad, I have dealt with this stuff for more than 20+ years. But, I have to realize that i am the father of four girls, husband to a lovely wife, and have a faith that I think has made the decision for me. The folks on this community have been great, answered hard questions, and been the the support I needed. I know this will not be easy, but the consequences of not having the surgery are not worth the risk to me and my family. I had one of my economics students ( I teach for a local college) tell me I needed to look at it from a short-term/long-term decision making model. Even though the decision for the short-term is not what we like, the long-term benefits will be profitable for a long time.

Wow guys. I can't tell you how much this helps me! I got really nervous after reading through the website and seeing just how many people were having problems with their pouches....I started thinking...well, if they are having this much trouble then why is surgery worth it? Maybe I should just take the fact that I'm going into remission and enjoy that instead of all the problems going into surgery...though in the back of my mind, I was still wondering when it would come back and how bad it would come back. I appreciate all your support and input.
Thank you so much!

Hi, I don't envy your decision, it is a tough situation but I guess you have to look at yourself as only you know your body. For me I have had my pouch for 8 years and the only problem I have is gas which is pretty minor really. Saying that I would still prefer my Colon because once it's gone it's gone. If your quality of life is good why have surgery on the off chance that it might get bad again. My mum used to always say "If your not sure what to do then do nothing" because time will always give you the answers. Good luck in your tough decision.

AnneElizabeth,

One of my GI docs in the hospital told me that, typically, flares occur ever 5 years once in remission. For me it seemed to be every 10 years except for the last few years prior to my surgery.

And as far as remission, I think most of us would tell you that steroid-induced (and maintained) remission is not really remission. You can't stay on prednisone or it will cause you a whole host of other issues. There is a lot of discussion on the site about the issues people have from being on prednisone - usually for an extended period of time, and for some people from being on really high doses for only a couple months. Most people don't have symptoms from their prednisone use until after they stop taking it.

I think everyone here has given you good feedback to help you make a decision. I think if I were you I would want to live as long as I could with my colon too, but you are much better off doing surgery electively.

The only question I would have is how does your doctor feel about doing the surgery while you are on prednisone? If it were my surgeon, she would probably have me doing the surgery in 3 steps so that she could perform the colectomy and then get me off prednisone for a few months prior to creating the pouch (in surgery #2).

Steve

Hi there....I had UC for 14 years. Of the three years prior to my surgery...I was in total remission for a year and half. I thought I was "cured", loving life, happy to be off Colazal, immuran, prednisone, etc. Then the ultimate flare hit and I was hospitalized twice in 4 months, the last one critical to my life! I had no choice then but surgery. You will ALWAYS wonder if you are making the right decision. I made it because basically, I had zero quality of life. You are young, vibrant, and a fantastic career choice ahead of you. Don't sentence yourself to a life full of pain, bleeding, solitude, remission and hope...and then repeating the cycle. It is your decision and yours alone. Knowing what I know now, I would have personally had my surgery 14 years earlier.
But then hindsight is 20/20. Good luck in your decision making.

It is normal to wonder if such a big decision is the right one. But colitis never really goes away, and you have no control over the frequency and severity of recurrances - the next one could be life-critical as the last poster. It took me years to realize how much my state of mind had changed living with colitis, always waiting for pain, never going anywhere without a bathroom, frantically traveling to one, the damage that the drugs did to my body. The physical remedy that surgery can bring is immediate and feels so much better than being sick, but I really think it takes a couple of years to get the perspective once again that you are not a "sick person" who spends all their time afraid or anticipating pain. Living that way is just not fun mentally. At SOME POINT in the future you will be that person that can't take the plane ride because of the time period that you aren't allowed to get up to use the bathroom, you can't go kayaking, you can't go to the hole in the wall restaurant with your co-workers for lunch because they don't have a bathroom, etc. I say get the surgery.

Does anyone know if you get rid of your risk of cancer completely by having the surgery?

The risk of cancer in the pouch and anorectal canal is not eliminated, but it is low, especially if you are not in the high risk group (cancer or dysplasia at time of suregery, long duration of UC, PSC, and/or chronic pouchitis). See:

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/9221...251065372#5251065372

This message has been edited. Last edited by: bobolink713,

Here's a good thread on the rate of complications, including a good journal article with full text:

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/6271...121079872#4121079872