Hi everyone, 

I was hoping to get some advice about the type of surgery I should get. I have FAP and had 95% of my large intestine removed when I was 17. A few years later, the growth rate of the polyps have significantly increased. I've been advised to have surgery as I have an additional 30% higher risk of developing cancer than before (over 50 polyps have developed in the remainder of my large intestine since my last screening 6 months ago). I have been told to decide between a J-Pouch or a stoma bag. I know that if I was to choose the latter, it's an irreversible procedure. However, I'm not sure if the Jpouch is the most suitable option for me as I have other medical/ personal issues to consider. I also have endometriosis, polycystic ovaries and other gynecological issues which may require further surgery in the years to come. I travel on public transport every day as I do not drive. I have no idea about the lifestyle changes and despite my best attempts to research I am nowhere near making a decision (despite only having several weeks to decide).

I'm very afraid to make the wrong decision which would further impact my confidence. I don't want to be that person who stops living because they are afraid of possibe issues in public. The problem is that any surving members of my family with this genetic condition have not been through this situation. I was brought up to expect the first surgery but this one has thrown me off from my normal "it's just another surgery" blase type of attitude. This is life changing. I have read so many brave stories on here thinking if I would be able to cope in your position. Any advice and honest answers about your experience/ my situation will be gratefully received.

Kindest regards,

Laura

Original Post

My writing is not eloquent and deep thoughts. 

I tried the pouch first. Didn't work. So now I have an end ileo. 

It's not irreversible if you leave things in place for the procedure (pouch) if you decide you do want one. 

My surgeon left enough in there to create a pouch and sewed me up from the inside leaving my rectum in place. In case I  changed my mind. I have an end ileo with the option. 

Bring it up with your surgeon. Like I said.  I'm not very good at all the explanations thing. It's just what was done with me.

Richard  

Thank you Richard! 

My surgeon explained that if I went for the J-Pouch, it would give me an option to try the other option after if it wasn't successful. However, the stoma bag would be able to change into a pouch. I will speak to him again though as your procedure seems a lot better. If you don't mind me asking, how do you find the changes? Is it a huge adjustment to your lifestyle?

Laura, it’s important to remember that most of the folks who post here are among the minority of J-pouchers who have significant problems. Most J-pouch surgery turns out well, just as most end-ileostomy surgery turns out well - and the satisfaction rates for both are about the same.

The J-pouch is usually a more challenging process and adjustment, but I’m sure glad I went through it.  I was in pretty sorry shape at the time, and the procedure enabled me to study martial arts with my daughter and take up scuba diving. Both of these would have been more difficult (or impossible) with an end ileostomy. I had no idea I would do either one at the time of my surgery.

Good luck!

Laura, I have FAP and had a J pouch for 30 years.  Although I had a high frequency (12+ BM’s a day) plus leakage, I strongly did not want the bag for its associated issues.  Due to recurrent high grade dysplasia and a malignant polyp in the anal canal, the J pouch had to be removed.  I still did not want an ileostomy and was fortunate to get a BCIR (similar to a K pouch) which has served me very well for the 6 years I have had it.

 My thoughts would be to get a J pouch first since it does have a good success rate. If your other medical conditions would make a J pouch difficult for you, a K pouch or BCIR would be good alternatives.  If you opted for the J pouch and it did not work out, the K pouch or BCIR could be done at a later time.  Both of those options have high success rates and patient satisfaction.  These two similar procedures do not require an external bag and are emptied 3-5 times a day with a small plastic catheter. There is no leakage of stool or gas and the buttonhole size stoma is covered with a small absorbent dressing.  No one will know that you have it unless you tell them.  Supplies for those procedures can run under $100 per year.  There is a lot of information about them on the internet.  Unfortunately, most doctors either are unaware of these procedures or have inaccurate information about them.  Please feel free to send me a PM with any questions you have.

Bill

Laura N posted:

Thank you Richard! 

My surgeon explained that if I went for the J-Pouch, it would give me an option to try the other option after if it wasn't successful. However, the stoma bag would be able to change into a pouch. I will speak to him again though as your procedure seems a lot better. If you don't mind me asking, how do you find the changes? Is it a huge adjustment to your lifestyle?

Pm sent. 

Thank you Bill and Scott! I needed that prospective. Normally, my mind set is very practical. I suppose for someone indecisive like me, it's easier to deal with any outcome when you only have one option rather than a choice. The fact that you both have been happy post surgery and it hasn't limited your lifestyle is great news! Thank so much!

Richard- thanks for sending me more info. Once I work out how to get to it I will reply. Sorry I'm new to this forum. For a 33 year old, I'm useless at technology

I would pick the J pouch over the stoma every time; although, prior to my J pouch surgery, having my bowel removed and a stoma created, it gave me my life back.

You shouldn't be expected to make such an important and life changing decision within weeks.

I assume your large bowel is all still intact; therefore, can you not ask if it's possible to remove all the troublesome part of the bowel and leave the anus and a rectal stump.

I had my large bowel removed during 2005 and here, within the UK, it appears to be normal practice to remove the infected  bowel first and create a rectal stump; thus providing time to recover and adjust to the use of the stoma and bag.

Some patients recover and adapt so well, they choose to keep the stoma and bag.

Although. I did adapt well and I wished I had my bowel removed and the stoma created years earlier, I still opted for the j pouch 9 years later, which was performed as St Marks Hospital, Harrow, during 2014.

So, if I can have a Stoma for 9 years, then a J pouch; this maybe a route you could explore, not necessarily 9 years though, maybe 12-18 months, which would given you sufficient time to recover and also experience day to day life with a stoma.

I only waited 9 years, as once my bowel was removed, it was thought I was suffering from Crohn's rather than UC but 9 years on, without flare ups or taking any medication to control my illness, Doctors decided I didn't suffer from Crohns after all; therefore I became a candidate for J pouch surgery, which was the best decision I've ever made; life was great with a stoma; life's absolutely wonderful with my J pouch.

I never advised anyone to keep a part of their rectum, I explained my experience and I suggested this maybe a route the OP could explore.

 The first surgeon I was referred to; he painted a very grim picture of life with a J pouch, he even suggested I keep my stoma because I had adapted so well; are you saying this surgeon knows best ?

The surgeon who removed my bowel and created my stoma came to the conclusion that I was infact suffering from Crohn's and not UC; it was his diagnosis that prevented me from undergoing j pouch surgery for 9½ years, did this surgeon know best ?

If FAP is as grave as you say; why did the Surgeon leave 5% of the OP's large intestine, when there's such an extreme risk of cancer; also, isn't the rectum retained during J pouch formation  ?

 

Hi Strange (sorry I don't know your actual name to address you properly),

Thank you for taking the time to post on this chat. I am really interested in everyone's experience as we all have different views. I'm sorry I haven't replied sooner. I left my area on whilst doing the dreaded housework so I could access easily when I had the time.

They removed 95% when I was 17 due to the stage of my growths. There were to many to treat as normal. I remember them asking if I wanted a j pouch then but I didn't really understand and I knew the rest of my family had been monitored closely for their remaining 5%. The reasoning was it was to give me a better quality of life by leaving the unaffected part of the bowel. Unfortunately, now the 5% and rectum is also at risk with over 50 growths. They gave me a few weeks to decide due the higher than normal risk of cancer. Biopsy results weren't great. I agree it's such a short time but that's all I've been given. They said any longer could result in further treat for cancer. With such pressure, I felt it was best to speak to you all. You all are the ones who have experienced the  change in lifestyle after all. 

Your 9 year gap really interests me though. Is that best suited for those who are indecisive? I was under the impression (obviously not factual) that it had to be taken quite quickly after the initial op. That is definitely something to think about. Thank you!

I know St Mark's! It's an amazing hospital. I'm glad it's worked out well for you.

Personally I'd stick to pouch forever it has almost given me my normal life back. My stoma bag was just a nuisance being too skinny it won't stick in my stomach properly and needed to be changed every 1-2 days, needless to say the skin irritation and hardships trying to change a bag come with it, I just can't handle any of that. I don't know where you live or what exactly is a FAP but if your surgeon is giving you an option of a pouch and you're in condition to handle the little ups and downs in the initial months go for it and don't look or think too much. Majority of people are living perfectly healthy life many don't post here so don't base your choice over others. 

Yeah getting an opinion is nice but keep in mind that the surgery if offered to only those who are compatible to have one. I've had polyps in my entire intestine so my surgeon removed the whole without second thought or asking for an opinion, I trusted him with my life and he did his job. He said once done you'll never have to look back again for any surgeon and I again trust him with that. 

Good luck with what you decide 👍

Strange, I only commented on the advice Laura’s surgeon provided, which was completely appropriate for the specific circumstances she described. There are plenty of mediocre surgeons, and I certainly wasn’t suggesting that every surgeon’s advice should be treated as gospel. It may well be that the most important decision made by a person considering a J-pouch is the selection of a surgeon.

Laura,

There is a lot of good feedback and info here...I hope it helps you get closer to understanding what mIHG work best for you. As others have said, I will echo that this site is often more frequented by those of us with complications. However, I will also say that my experience was that my local GI docs and surgeons didn’t have accurate info on complication rates, didn’t take into consideration my personal health, and were overly optimistic. Once I ended up at Cleveland Clinic and began reading the medical studies myself I saw how much guesswork was still being used in the diagnosis and treatment of colon diseases. Thankfully, it’s been an area with more study in recent years.

I was diagnosed with UC initially while pregnant at 32. I was managed with medications for 8 years and while trying at times, had no idea how bad things could get. At 40 I experienced toxic megacolon and spent two months in the hospital while doctors tried to save my colon, failed, then saved my life by removing it in deteriorated pieces. I have had 6 surgeries in the last 8 years and countless ER admits and several additional ICU stays due to blockages, large surgical hernia repair and other complications. I have had an end ileostomy, loop ileostomy, j-pouch (technically an ileoanal reservoir or ileoanal pouch with anal anastomosis) and now k-pouch (technically an ileoanal reservoir with continent ileostomy.) And there are those who have experienced far worse than I. But keep in mind, I also know people who have had no problems whatsoever after elective j-pouch surgery and know that they are in the statistical majority.

I moved on from the first ileostomy given to me at the time of colon removal because my local doctors were so convincing that the j-pouch was the best long term solution. (Keep in mind some of us ”pouchers” can experience this process in 1, 2, or 3 surgeries.) Then, while bagging the “loop ileostomy” and waiting for my pouch to heal before “take-down” surgery (normally 2-3 months), I had what I now understand was my first “flare-up” post colon removal. I had new skin manifestations (pyoderma gangrenosum) that made it all but impossible to wear an ostomy appliance (stoma bag.) But neither my local doctors nor I understood the long term implications of possible on-going auto-immune disease and instead thought it best to rush into the final j-pouch surgery as planned.

I had a j-pouch for 5 years, all of which were a constant trial and it was during this time that I found j-pouch.org and learned what I’d been missing. I also began reading all the medical studies myself and learning a lot about things my doctors either didn’t know or didn’t talk about. God bless those who make this forum possible and continue to contribute and make it so valuable — this is where I heard about tips and tricks or treatments to cope with my on-going problems. This is also where I learned about Dr. Shen at Cleveland Clinic and about my last surgeon, Dr. Dietz, and the better option for me called the k-pouch (Kock Pouch.)

I respect everyone’s respectful opinions and understand we all speak from our own experiences. For everyone who trusts their surgeon implicitly there are also those that don’t for good reason. Sometimes a doctor or surgeon can be misinformed and make a poor recommendation through no fault of their own. And sometimes a good or bad outcome is just luck. A good outcome doesn’t always mean the path followed was correct — it may have just worked out. Likewise, a poor outcome doesn’t mean the path followed was incorrect — sh*t happens.

But if I were you, I’d want to know what is possible, not just probable. I’d want to know the actual numbers of what my chances were of experiencing what outcomes. I’d want to know a lot more about what experience my doctor, surgeon, and hospital have with my disease and who/where has more. Specifically, I’d ask what my chances are of experiencing disease (in your case polyps) in the parts that remain with a j-pouch (stump?.) Then I would make the best choice for me, with little regard for what a well-meaning doctor/nurse (with nothing but respect) who doesn’t live with me and my family or my disease might suggest. They usually mean well, they just can’t know what they don’t know — especially Y-O-U.

It turns out that having toxic megacolon was one of my early signs I might not be a good candidate for the j-pouch (sign of disease severity), as was having extra-intestinal manifestations (skin & joint inflammation signaled future pouch & stump inflammation.) Having had fourth-degree tears during multiple 10 lb childbirths didn’t help either (repaired pelvic muscles lead to rectal prolapse.)

Since you have FAP, I would focus on discussing with your doctors (2nd opinion?) the things that are specific to your general health and your experiences with the disease along with the process it has taken for you (& your family?) From what little I know, it is a totally different disease process than IBD (C&UC) and, though some of the surgical solutions are similar, likely has its own different set of implications. It’s not about stressing yourself out as that only makes things worse. You can’t know the unknowable either :-) PIck what matters to you, ask those questions or do the research and then move forward. I’m glad to know you will find more info and support on this forum!

Bless you on your journey & blessings for the best possible outcome!

Jennifer (Michigan, USA)

Very little to add to Jennifer and other responders.

I too have a k pouch, after having a failed J pouch  due to pouchitis among other problems.  I can add what one G.I. doctor said—that people who only have cancer and not UC, in addition, generally don’t get pouchitis. So that’s one plus for you if you get a J pouch.

I too had endometriosis and cysts on my ovaries. This is just my opinion,  and I have no idea about the severity between yours and mine, but I didn’t have any contradiction between those diseases and getting a J pouch.   I was also older when  first diagnosed with UC than you are now. 

 also, from my personal experiences, I get  second opinions from a different hospital system. Perhaps it’s different in the UK, but I have found groupthink in hospitals. To simply go to another doctor in the same hospital will probably result in the same opinion.  I guess I’m going to add another also – – remember that you know your body better than any doctor. Yes, of course, they know more medicine.  But clearly explain your symptoms, and get them to treat you in a holistic manner,  which includes your mental  well being  

I hope all sorts out. It’s tough, don’t kid yourself. We’re here for support and advice. Keep us posted please. Janet

 

 

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