i am looking for anyone who has fap who went from a j pouch to ileostomy and how it is going? On Monday I am going to tell my doctor I am throwing in the towel. Can any one share their story of how having an ileostomy has effected their life. What was your recovery time from surgery, do you get yeast infections around the stoma and skin irritations from the bag?
Replies sorted oldest to newest
I didn't have what you have but my pouch just didn't work.
After two years I had it removed. I have had the end ileo 3 years this month. It has flew by. I haven't been to a Dr in I don't know. Two years. I am fortunate it works well.
No skin problems. No leaks. Only times I've had leaks was because I did something wrong.
I have my life back. Not where I expected to end up but I'm fine with it.
One thing they don't tell you. The more you eat. And I eat alot now. The more you empty. No big deal really. Reason being is now I can eat anything And I have no regrets later.
I also have FAP and had a J pouch for 30 years before it had to be removed due to a malignant polyp and recurrent high grade dysplasia in the anal canal. I got a second opinion on my condition and carefully researched my options. In my case, I strongly did not want an ileostomy and opted to get a BCIR. I have now had it for just over five years and it has given me an excellent quality of life. I have no regrets whatsoever for the decision I made. The surgery to remove my J pouch was challenging due to the presence of numerous dense adhesions from earlier surgery. I was in the hospital for the customary 21 days and was able to do almost anything I wanted three months after surgery. The important things to remember are to maintain a positive attitude and to start walking soon after surgery. Since I did not opt for an ileostomy, I am unable to comment on life with one. Recovery from ileostomy surgery should be similar to the surgery I had. I wish you the best with your upcoming surgery.
Yeah, your previous feedback really helped me with my research and almost directed me to the bcir but I have opted to go to the ileostomy. Florida is just too much of a trip and really feel confident with my decision. I am not sure of your age but did you go back to work sooner than 3 months? I’m trying to gage total recovery and how long I might be off work.
Hi, what does the following mean please: BCIR and FAP??
Cari, the important thing is that you have done your research and are confident that you made the decision that is right for you. If, by chance, your ileostomy does not work out to your satisfaction, you would still be able to get a BCIR or the closely related K pouch. As things turned out, I was in the Mayo Clinic for my third surgery that gave me my J pouch (in a single operation) when my employer, a large hospital, sent me a registered letter while I was hospitalized that informed me that I was terminated from my job as Vice President of Finance. This happened before the Americans with Disabilities Act became law and I had no legal recourse. The week after I returned home, I went back to the hospital to plead my case (to no avail) and to remove my personal effects from my office. Although it was very difficult given my surgery several weeks before, I promptly began my search for a new job. This was like working almost full-time, but I survived. I was 38 at the time. I was 68 and retired when I had my BCIR surgery. The week after returning home, I went to an all-day outdoor estate auction that required lots of walking and I had no problems. I soon started doing other activities, but followed my surgeon’s lifting restriction to the letter.
Mat, the BCIR is also known as the Barnett Continent Intestinal Reservoir, a modification of the Kock pouch. The advantages of these procedures include not having an external bag with its associated issues. You can get information about these procedures on the internet. FAP is Familial Adenomatous Polyposis, a genetic disorder in which hundreds of polyps develop in the colon. If not surgically treated, it leads to colon cancer.
I was 59 when I had the ileo installed and the pouch removed.
I was not in the best of health and in my opinion (and others) close to and looking like walking death.
I was back to a 40 hour week in 8 weeks. I could have gone back in 6 weeks but I personally needed the time to get myself together. I have had the same job well over 30 years.
Keep in mind I only had my pouch two years. That made it easy to remove. I was in the hospital 11 days after. But I was really sick from the pouch. And down to 128 pounds. From 176 pounds.
No way in my world would I have survived had I tried for another type of pouch. Especially if it failed. The body can put up with alot but mine had been put through enough. My mind or mental state was deteriorating I had to be done. And this worked as well as could be for me.
At my age no one cares what I have as long as I'm healthy and alive. I'm back up to 165 pounds and it's taken me 3 years to get my weight back. Most of it.
I'm 62 now. I don't even notice most of the time I have an ileo because I'm busy working or doing chores at the house.
Just have to pick what's best for yourself. This is it for me.
Personally I'm glad this is it. It empties itself. I just change the appliance twice a week. I could go once a week but with the work I do the bag just gets frayed and dirty on the outside. And to be safe in keeping my skin healthy I change. I feel even just after 3 years I've had this all my life. I have no more pain or other problems except the ones that come with just getting older. Lol.
It's not a bad place to be.
Good luck. With any decision you make.
Thank you for the details that is what I was looking for. I good idea of recovery to feel a little bit better about another surgery😔 I hate to make a decision over the symptoms I am having cuz it is a big decision but I am over them and I want some freedom from the bathroom
It is a big decision I put it off a long time and shouldn't have. But this is my personal story. Everyone is different. That's for sure.
One small thing I do advise is that if you do get a stoma make sure your surgeon knows and that you want a long stoma. Mine understood this and gave me a perfect one.
I didn't think so at first. I couldn't look. Now it's part of me but it took time to get used to it. Like anything.
Your surgeon can leave enough to ty a pouch later. Even leaving your rear end intact. Mine did. But I'm not going through it again. But I have the option.
I had my j pouch @ 19 and was also sicker than a dog from the temp ileostomy and lost 40 lbs took me down to 99lbs and also thought I was gonna die. That is why this time around I’m so scared because of my experience 24 years ago
Temporary and permanent ileo's are so different.
It was what scared me too. My temporary ileo was a nightmare. My permanent is a breeze.
Your difficult experience with an earlier surgery is definitely a valid reason in support of your present decision. An ileostomy will give you the chance to regain your health and most likely give you a better quality of life. I approached my surgeries in good health, with a few extra pounds and a very strong motivation (life quality issues) that led me to first choose the J pouch, and later the BCIR instead of an ileostomy. But those were my motivating factors that may not be shared by others. One thing I have read on a number of occasions is the recommendation that you meet with an ostomy nurse at the hospital before surgery and have them mark the most desirable location for your surgeon to place your stoma. After surgery, this nurse will instruct you in the care of your ostomy and give you contact information should you need assistance with it after leaving the hospital.
Thank you bill. It’s a tough decision but sometimes you gotta go for it. I have really gone over this and I have to just make the decision and keep a good attitude about it. I think when it’s all said and done I will be happy just nervous about recovery and how long I will have to be off work. But thank you on the advice of the placement for the osteomy cuz that is something I would not have thought of.
I just want to add that I was scared of an ileo because I too had a horrible time with my temporary ileo. I relied on everyone here that told me end ones were night and day different from permanent ones. They were right. I was diverted first and 6 months later had my j-pouch removed and it still had pouchitis and cuffitis.
I was no longer able to work as I have other health problems. I'd say the problem you will have is with your Barbie butt. It took a long time before I was able to sit without a cushion, at least 6 months. I had 2 waffle like ones and kept one in the car and another inside. I could sit without one if I sat on one cheek. There was probably extra healing/pain time because it took longer than normal for the stitching closing my back door to heal. I saw a local stoma nurse about that. So if you sit a lot for your job invest in some good cushions - not the doughnut like ones.
The surgeon said the operation was more difficult than the ones making j-pouches but I felt so much better I think the recovery was better. This all happened around 3 years ago and I was 59 at that time.
I agree with Richard about the stoma placement and length. I didn't ask about the length. She just did it right. When the stoma nurse was in the process of marking where to locate the ileo I requested she place it lower than where she was going to mark it. It would have been too close to my waist. My surgeon said she'd try to do it where I asked and she was able to. Later I read in the surgery notes that she placed it where I demanded, lol. I didn't think I was demanding but might have come off that way with the nurse.
I agree with Richard about problems with the skin and ileo. I have the opposite problem than he did - I was over weight. Because of my abdominal fat from 5 open surgeries it makes wearing the appliance a bit harder. I wear a one piece and change it every other day. I recommend that you get appliance samples from every company out there. I still get samples when new products come out. They are happy to send samples of them and every thing that comes along with them.
By Barbie butt meaning taking out everything right? So anus and all? Does it hurt in general or just when you sit? That’s the other hard decision is to close it all off or not? If I do that will I be able to go to a bcir pouch if needed down the road.
Yes a butt means taking all out including the anus. I don't know about how this would affect getting a K-pouch. There is the possibility of leaving this intact but not recommended for me. I did get diverted to a perm ileo for 6 months before getting my j-pouch and all removed. Did they discuss the option of resting your j-pouch by getting diverted like this?
Getting a Barbie (or Ken for guys) butt means that the anus is removed. The anus is never needed when getting either a K pouch or BCIR. The main reason one would opt to keep their anus would be to try another J pouch in the future. For me, the closure of my bottom was uncomfortable (when sitting) for about a week after surgery, but I had no pain sitting for the 12 hour trip home after being discharged from the hospital. Others have had different experiences. About half of BCIR surgeries are for people who experience significant problems with their ileostomies or have quality of life issues with them. A lesser percentage applies for those having their J pouch removed.