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For those with FAP and related diseases, I've started this forum so you don't have to search the other forums to connect with others and to post questions that might be seen quicker by those with knowledge.

Charlie (Chuckus) has offered to assist those with FAP in getting needed information and support.

There is a GREAT forum and resource available online that he is an Administrator on....as well as multiple "secret" groups on Facebook.

If anyone is interested in the "secret" groups on Facebook, they can message him and they can connect on FB and he can "add" them.....

As for the Forum

www.fapinfo.com

You can send a Private Dialog to Charlie through his profile here:
https://www.j-pouch.org/profile/434913817489922415

Jan Smiler

 

P.S. I have upated Charlie's profile link, since the old one no longer worked since changing the host for the forum.

Last edited by Jan Dollar
Original Post
Thanks Jan.

Just a note for anyone with FAP that would like help or further information.

We are rare and a small group, but, all willing to help each other. There are many forms of incorrect information out there regarding FAP/GS and it is VERY important that you get up to date, accurate information. Please do utilize the website as a tool and please also contact me about joining our "secret" groups on Facebook as we talk about everything and anything FAP related. We are all here to help one another with this genetic condition.

Charlie
Finally! So glad that there is finally somewhere to go for help and info on FAP! When I had my surgery, it was known as a Park's pouch, later called an S-pouch. When I started seeing my GE doc over 15 years ago, he had no idea what a Park's pouch was! I don't think he had much experience with patients with any type of pouch, as he asked me to give him a copy of my surgery report so he would know what I had had done.

Marlene
Diagnosed May 1981, first surgery for Park's Pouch August 1981, take down Nov. 1981.
FAP runs in my dad family. It has taken almost everyone out. So now its my turn. Im 28.. had my first colonoscopy done. They found hundreds to thousands of polyps. Too many to be removed and immediately referred to a colon-rectal surgeon to have the j-pouch procedure done. Still waiting on them to contact me with the appt. I have a wonderful husband by my side supporting me. I have 5 children ranging from 5 mo - 10 yrs old. Not sure where to turn to. I don't want to have it done. I don't deal with pain too well and the idea of having a bag doesn't sound great. My dad had one for a few years before he died from cancer. I have seen horrible things with it. Any advice on this would be great. Anyone know of websites that could help with information on this would be great also.
Amanda,
My FAP was also discovered by a colonoscopy and I was told 33 years ago that surgery was necessary to save my life. I had one of the early J pouch operations and am now alive and healthy and enjoying my four grandchildren. Surgical techniques have improved greatly and properly administered pain medications make pain less of an issue. J pouch surgery has a high rate of success and patient satisfaction and is the procedure of choice for UC and FAP. Be sure that your surgeon has lots of experience and a good track record in performing this surgery. Two alternative procedures, the K pouch and closely related BCIR also avoid the need to have the bag, and are now most commonly used for those having problems with their J pouch or ileostomy. Lots of information about all of the surgical options plus FAP is available on the internet. I am hoping that your doctor discovered your FAP before any of the polyps became malignant and wish you the best! Sounds like you have a great family to support you in these challenging times.
Bill
Bill, where and when did you have your surgery done, and by whom? Am curious because I also had mine 33 yrs. ago, in August 1981, at Fairview Hospital in MPLS. by Dr. Carl Christenson. But it was not called a J-Pouch back then. In fact it was not a J-pouch at all, it was an S-pouch, but called a Park's pouch at that time.

Amanda,

 

I am new to this group. Just reading through this thread. I had my JPouch operation in one step back in 1995. I was 29 years old with 2 kids under 2! My daughter, 21 just had her operation this month!! She had it in one step as well. If you are otherwise healthy, talk to your surgeon. My daughter had her surgery done Laparoscopically!

I thought I had posted on this FAP thread, but maybe not.  Yes, it is wonderful to connect with FAP people - I forget the stats - but we are a relatively rare breed - lucky us  Yes, FAP took out 11 of my father's 12 in the preceding generation.  Can you imagine how scared he must have been - he got cancer at age 23 while in the army.  This was back in the late 50s.  They didn't have pouch then, so they removed the cancerous part and then for years he went in and got scoped, had polyps removed (no anesthesia).

  At age 50, he got the pouch by a doctor in Austin, TX - Dr. Ralph Bailey - wonderful guy.  My sister and I got the pouch at age 18 and 23 - also by Ralph in Austin.  I wish we had not gotten it so young, looking back.  That said, who knows?  Maybe it was the right thing to do. I generally do not stay up to date on all the other data on FAP - all the thyroid and other things we need to worry about.  I think the reason is my Dad is now 78 - 79 in a month - and none of those things happened to him.  I know that is no guarantee for me. I know everyone is different in regard to how much they want to know regarding FAP.  I think I may different because I was unable to have children.  So, for me, I'm the end of the line on FAP.  I hate that it sounds so selfish, but there ya have it.

  BTW, they pressured him big time to go back to ileostomy as he had some cancer in pouch/rectum that was flat - maybe it was pre- cancer - I can't remember.  This was about 5 years ago.  She (his surgeon at Duke) said, I just don't think I can get to it.  He thought long and hard and said, "nope".  So, she cut at it etc. and hoped she got it all.  Fast forward 5 years later - no problems with it - he scopes yearly.  This may not have been the right choice for many - it was to him, and I'm so glad he is still here and doing pretty well for 79!

My sister has three kids - and two have been diagnosed with FAP - they go to Cleveland Clinic - fly there from Philly once a year.  I hope maybe the third kid will luck out.  I'm excited that they are doing the pouches larger, that the surgeries are less invasive now, and that they are trying to wait longer to ensure fertility and just spending less time with the pouch.  When my sister and I did it, neither of us had cancer - and I wonder if I could have had kids and then gotten the pouch.  That said, it didn't happen - I grieved a lot as I so wanted kids..but that was many moons ago.  I'm 52, have had pouch almost 30 years.  I am interested in information about FAP - especially if there is anything new they find out to help out my niece and nephews. 

One odd thing - when my sister started all this prep for dealing with her kids having to go get tested, she went to do genetic testing in Philly.  Her test came back negative for FAP and Lynch Syndrome.  (Blood tests).  Well, clearly she had something like FAP as her colon was carpeted with polyps - but, it must be some variation.  If Chuckus or anyone knows anything about that, I'd sure be interested.  She was pissed at first - as in - you are kidding - I don't have it? And I've lived with this pouch since I've been 18?  But, she clearly has something - it just did not come up on blood test as FAP or Lynch or Gardners.  Would love to know if others have done any of this type of genetic testing. 

This was long, but wanted to introduce myself to the FAP group.  Thanks to all for reading. It took me years to get onto this site and really get into it - it's been here for so long, and I just never felt like I had the time to explore it.  I sure makes me feel less alone. So thankful for these website and all you out there who understand this experience.

My son-13 years old had his surgery in July, 2015-done all in 1 surgery laproscopically - after few first hours after surgery pain was well under control. Both of my children have fap, so one more surgery to go.  Its not fun, but better than treating cancer.  One of my kids has chronic headaches, wondering if anyone else has dealt with this problem?  Having trouble finding a cause, eyes good, mri fine, he sometimes wakes up with them.

This is wonderful - one surgery and laproscopially - sp? - fantastic.  My Dad had headaches after surgery.  He traced his back to lomotil, if I recall.  Taking any meds that "slowed him down" beyond Metamucil caused him headaches.  Sorry if spelling is wrong.  So, he quit take the lomotil and headaches went away.  I bet others will know more about this than me.  No - this surgery is not fun, but as you said, it beats the alternative.  I hope they do well with them as time goes on.  I am so thankful my niece and nephew are having the 1 step surgery at C. Clinic.  There is one more of her kids to be tested- hope he lucks out and does not have it.  So hard on a mom. I hope someone can help you with the headache question.

I have commented on other forums.  I have fap and Had a jpouch put in 24 years ago. I have been having issues that led to having my original surgeon scope my pouch.  When he scoped it two weeks ago he seen there was a stricture with a great deal of obstruction.  I went to the er last night and was able to get in today to see him again and he stated that the stricture is so bad that there is not much of an opening.  He is going to attempt more stimulation next week to see if it is effective.  my surgeon stated upon me asking him that he does not think stimulating the jpouch stricture is going to be effective. Plus he says there is dysplasia and believes having the jpouch removed would be the best option all the way around. I have been coming to terms with this fact the last two weeks. The past 6 months have been awful. I am ready for some relief just nervous about the procedure as it was a rough surgery road when I was 19 so nervous about going they it all again.

I just found this forum yesterday. I was 8 years old when I started growing polyps. From the age of 8,  I was going to many different colon specialists because they didn’t believe nothing was going on in my anus.  Finally at the age of 16 it turned into per cancerous polyp. Up until that point they said they could not find anything. So from the age of 8 I have had 45 colonoscopies and 15 major surgeries in my stomach and rectum area. At 25 they I had colon cancer and they remove part of my large intestine and gave me a colonic J-pouch. I have had 4 rounds of genetic test to see if I have FAP. The only thing it tells me that I have a Variation in the APC  gene and they need to do more research. So my first doctor who  diagnosed me with FAP  clinically because I have a family history and I have had 50+ polyps. Since I have had all those surgeries and procedures my health has never been the same. I get intestinal blockage often, I have IBS-D and I am stiff in the joints and achy all the time. I try to work with my doctors for treatment options but to be honest I don’t think they know what to do with me. Today I asked my doctor for a PET Scan to see if I am growing polyps or tumors In other places. He said he doesn’t think I need it because FAP wasn’t diagnose genetically. I was so mad! Just because “they lack sufficient evidence to determine if these variants have any impact on health risks and the gene need further clarification” was the answer I got from the genetic testing labs. Apparently they DO have an impact on my health.  So I think I need to find a good doctor in the Charlotte, NC  area that I can go too that can help me manage it better and manager pain better. If anyone knows of a good doctor please let me know. At this point I’m 45 years old and I wish they knew this in the beginning.  I would have had them remove all my colon and give me an ileostomy bag. I’m tired of dealing with this. 

I have not been on here in a long time - somehow this came to my e-mail so I ought to do better at helping others.  Sadly, my husband of 25 years asked for a divorce about 6 months ago  - I'm a wreck.  But, I'm going to get past it.  Never dreamed this guy would betray me in a zillion years!  That's how these things happen though.  

Vonnie - I am so sorry to hear your story.  You are going through a sort of hell right now about all this.  I think now that genetic testing is so much different than back in the day (I'm 57), they don't always show "FAP" anymore - just some mutations which have no "name".  I only know this because my sister and I have it and at one point, she had to get her kids tested and herself tested at Cleveland Clinic - her test did not come back "FAP" - but - regardless - that's really what we have.  Her kids go to CC and all care is based on FAP even if that's not the exact name of the mutation.  I wish I could help you out in Charlotte.  I don't know any docs there, but hopefully someone on here will.  Is there any way you can fly to Cleveland Clinic?  (I can't - don't have the money - my sister does) - so I understand that perhaps financially you can't do it.  They are so good there with FAP - the entire way they do everything is to avoid the nonsense you are going through.  But, for now, please don't give up.  Vent your anger and frustration on here. I too have times when my symptoms (have had the pouch for I guess 34 years?) are so awful, painful, etc. - I would miss work, etc. - and I never did apply for disability, but I should have. Too much pride.  Another suggestion - are there any support groups for people who suffer from chronic pain?  You need to (I know - it's one more thing to do) meet people who "get it".  I've also read several books on managing chronic pain, fatigue, etc. and found them helpful. There are lots of them.  One book - I forgot the name, but I'll find it for you - is by a man with UC (if I recall) and for years he went through the same stuff you did - doctors saying, "well - everyone gets diarrhea now and then"  or "well, everyone gets GI cramps now and then" - the book teaches you how to go into a new doctor prepared so that you don't get the brush off. Docs are often good people, but they have patient after patient and frankly - as they age, they just get tired of it.  They want you in and out as fast as possible and then- hand you the bill.  Put simply, they are human.  I've never really found one who understands any of it - but I just sort of gave up.  CClinic seems to be the magic place to get true care, effort from doctors, and real solutions - knowing there will never be a 100 percent perfect solution.  I find as I age I need more rest, more down time, etc. jsut to cope with it - but many people are not like this - we are all different.  Please keep trying.  Keep asking on here about Charlotte doctors.  I bet if you keep asking - and also ask as many people as you can out there in your daily life- ask ask ask - that there is a kind, caring doctor who will help you more.  You probably would benefit from meditation and yoga ( I know - I didn't want to do it either) - tons of chronic pain sufferers find relief and compassionate friends who understand daily pain.  I can't go now becaue of Covid. My sister bought me 10 classes..I made it to two?  and the Covid hit.  OK - that's all for now. Again- you feel alone - I get it - but you are not.  I will be moving eventually once my divorce is final and one of my goals is to find people in a church (I don't go regularly - but I need to for emotional well being), find suppport groups, and to not hide out in my house all the time because I am so tired of dealing with this.  It just makes me more depressed - you (and I am bad at it!) have to get out.  For now, with Covid - that may not be possible - so many things are cancelled for now - but this Covid, I pray, won't last forever.  Keep us posted regarding how you are doing.  As Jan says, "this too shall pass" - wise words!

 

Angie, Thank you so much for replying! I am so sorry you are going through divorce after 25 years of marriage. Take a look at this website. https://www.jw.org/en/library/...rward-after-divorce/ It gives you information to help you cope with your divorce. I hope this website helps you! 

As for Cleveland Clinic, I was raised in south Florida and I went there for years. I love the colon surgical team down there. After I moved to the Charlotte area I kept flying down there for years I went back and forth to Florida for treatment. My doctor was Dr. Steven Wexner and Dr. Juan Noguesas. I wish I could go back to them but it was expensive going back and forth. I do have some support with my family and friends they don’t have health issues and sometimes they don’t understand. And I feel bad sometimes explaining how I feel because I do have bad days and they will take care of me. But the websites does help because there are people who understands what I’m going though and they can make suggests like you did!😃 I really do appreciate you responding and your advice. I will look into some books about pain management.

Thanks vonnie 

Thanks for the website.  I found the book!  It helped me a lot - not because it changed everything...but this guy truly has walked through this - his a Pharmacist and PhD and as I said- he goes through all the docs who just do not hear him - as if he is making his pain up.  He didn't want opiates - he wanted help.  Well, this guy didn't give up and the book is affirming.  It is:  "When There is No Cure" - subtitle "How to Thrive Wile Living with the Pain and Suffering of Chronic Illness" by Craig K. Svensson, PharmD, PhD.  The 5 bucks or whatever I paid for it on Amazon was well worth it - we need to be heard. It's a very basic human need.  And of course, life is not fair, and we don't always get heard -I get that.  But my gosh, what else is all this life for if we cannot be compassionate?  We all hit burn out on that - I get it - I sure did in my counseling job.  But in the end, this is love - compassion and simply saying, "I hear you, I have the same thing" - it is so helpful.  God Bless and know I hear you and I do care.  I'm sorry about all the suffering in this world - and Covid - all of it - but the only solace seems to be telling others they are wonderful, they are worthy, and they are not alone in their suffering.  

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