New to Group-Planning surgery and scared

Hi Mollycp,

I dealt with the ups-and-downs of uc for a similar timeframe to your prior to accepting that surgery was the option for me in April of this year. I went through a three step process starting in early June.

This post may be perceived as negative to some, however I feel it is important to be honest and frank.

Firstly, I would try any medical options available to you to keen your colon. Perhaps it was just me, I have had a few 'what if' moments along the journey, even when in my heart I know I had no choice. Getting through the different surgical steps is really mentally and physically tough. Mentally, I think it is important to continue knowing that no other options are/were available.

You must approach this decision knowing that you are happy to live with a permanent illestomy. Whilst there is a good chance that a pouch will work for you, there are many examples of people out there where it has not worked for whatever reason. Its a reality that your surgical options are limited, and each major surgery you commit to has a unique set of potential complications that can occur.

Another thing to understand is that no two pouches at the same. There are big differences in the quality of the outcomes, this is very evident when you speak to a wide range of people. People are also coming to j-pouch land from different experiences, I believe this contributes to their perception of their pouch.

At the end of the day, you are trading one set of problems for a very big unknown that will have its own challenges. There are no guarantees.

I am 8 or 9 weeks post-op now. Today I have used the bathroom 8 or 9 times so far. I will probably use it at least another 2 or 3 times. My results are fairly normal I think, and I still find it extremely tough. I can get through life, but I cant eat or drink like I used to, and there are limits to what and when I can do things socially.

I wish you well with your decision making process.

The J-pouch gave me my life back, but that's not the same as having a life unaffected by the disease and its treatments. I never have regretted the surgery, but I underestimated the ongoing attention my J-pouch requires.

Hi and welcome! I have to keep this short because I'm leaving for work but I just wanted to say this procedure has been a life saver for me! I am so grateful everyday for my j pouch. I was so sick and had no quality of life with UC. The surgeries are really tough but for me it was worth it....very much worth it. Good luck!

If you do decided in favor of the J-Pouch, please schedule the first surgery when you are healthy.

The surgical process is a very long journey (about a year for me), but this site has been a blessing and helped me considerably.

Overall, I am a success story. You do not feel like a success while you are going through the process, but I am 7 months post take-down and I am doing very well.

I really do not limit my diet, drink wine every day and no longer count how many times I go to the bathroom. I am sure it is around 4-6 times and I sleep soundly through the night.

Hi Molly,

My experience and sentiments sounds similar to Salmak. I would like to add that I am temporarily on an antidepressant. It seems to take the edge off of my "new normal". I never thought I would be on that type of medication but I am grateful my family doctor suggested it. When I am ready I will wean myself off of it.

I used to refer to my "medical problems" but now I call it my "medical adventures". Hey, who doesn't like an adventure!

Best wishes, Dorothy

You are fortunate to have a good support system, even though they may not comprehend all that you are going through. The above posts present some very helpful information; in particular, being sure that there are no realistic medical options to surgery and being in relatively good shape before having surgery.

I was about your age when I was diagnosed with FAP, so my colon had to go. Fortunately, I learned that Mayo Clinic was performing the J pouch procedure, and I was one of the first to have it. I had a frequency problem after the temporary ileo was taken down, and a third operation to expand the pouch helped somewhat. The pouch lasted for 30 years and I learned how to adapt to the frequency problem. Unfortunately, frequency increased and my GI found dysplasia, making it necessary to have the J pouch removed. I opted for a BCIR so that I could enjoy a quality of life that the bag would not offer. I am very pleased with the decision I made and am now 7 months post op and doing very well.

My recommendation is to thouroughly research your options and select a surgeon who has done many of the selected procedure and has an excellent track record. If you select the J pouch, keep in mind that it can be converted to a K pouch or BCIR later if your situation warrants.

Hi Molly,

What you're feeling and saying seems very normal, and you came to the right place to hear from others!

Everyone's experience is entirely different. My jpouch experience has been quite positive. You sound like you've been deealing with a lot of problems. My surgeon told me his goal is to provide his patients with a better quality of life in the long run. So in my opinion they wouldn;t be offering you this choice if they knew you would be in worse shape. I had my colon removed 3 years ago (I was 23) and I feel good. I have FAP. Recovering post-surgery wasn't easy, but this is just a temporary thing. I had a temporary ileostomy and now have the jpouch. I confidently say that both options did not stop my life. Again, not everybody feels the same way and each body is different, but my experience was positive.

Doing your research is very important before you make any decisions, so make sure you ask your doctor any question on your mind. When I was facing this surgery I joined an ostomy support group and met with people who have jpouches. I got a good feel of what life is like with either outcome. It was very helpful.

I wish you all the best! Feel free to message
me if you want to chat.

Zee