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J-Pouch ForumsFAP Forum
For those wanting info on FAP and support
Jan DollarJan Dollar
Vonnie Thank you Angie! I will take a look at the book. [ more ]
Angie Wilson 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... [ more ]
Running on MT ❤️
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J-Pouch ForumsFAP Forum
Blood test for fap when to make it
BorislavBorislav
Mary2017 ❤️
Mary2017 Wow, thank-you for sharing this story! That sounds very traumatizing! I am sorry to hear all of that. I am glad you got your colon/rectum out, I hope your kids will be okay. [ more ]
Lana I have FAP and I may be the 1st in my family. I am 61 yrs old but had j pouch surgery at age 35. My kids were 17 & 13 and because the genetic doctors could not identify the gene at that time, my kids had to have upper endoscopy and colonoscopies. Neither had polyps. The doctors recommended repeating these tests in 5 years, etc. I just had genetic testing this year and they identified the APC gene that causes colon cancer along with 2 other cancer genes. My kids got testing and neither of... [ more ]
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J-Pouch ForumsFAP Forum
Low grade dysplyasya duodenum
BorislavBorislav
Borislav Hello @Len78 Hello I read now my history (epicrisis about octomber i was in hospital 02.10.2024) and was wrote that i have Fundic gland Polyps 4 polyps size 0.2mm small.. i read that fundic gland polyps are because i drink for acids medicaments proton pump inhibitor (ppi) - Nexium is because i drink i make more polyps and are this polyps like adenoma what is the diffrent beetwen them and says that i have hyperplastic polyps in pouch what is this meaning of hyperplastic? three years i check... [ more ]
Len78 Borislav, I’m a fellow FAP member your dr should be removing those polyps not telling you they’re ok polyps increase in size and quantity with our disease I’m facing a total gastrectomy for carpeting in the stomach and I too have some polyps in the duodenom the greater the polyp in size the more likely it is to become dysplastic honestly I’d be shopping for a new gastrointerogist one who agrees that he should be proactive as progressive with your polyps fap disease is a monster by the way... [ more ]
Borislav And he says in ampullla hater not have polyps only around ampulla vater [ more ]
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J-Pouch ForumsFAP Forum
definition of FAP
P Pots
Former Member Your welcome!! I actually never heard of FAP until I joined this forum. Then I started researching it lol. Remember, there are no stupid questions love [ more ]
Dutchie WOW! I had no idea. Thanks Lauren of Emerald City for posting that link. [ more ]
Former Member No such thing as a stupid question https://www.youtube.com/watch?v=JQpt3b-jIAw [ more ]
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J-Pouch ForumsFAP Forum
ulcers were found in my pouch aside from duodenom and stomach on prior pouchoscopy/endoscopy from 10/10/24
Len78Len78
Len78 hi michael, the ulcers in the duodenom and stomach were clear by the next scope which was 2/29 , prior scope was 10/10/23 he didnt comment on pouch ulcers but some history/reports suggested they were in the jpouch too not just stomach and duodenom ulcers are the least of a concern. im dealing with dysplasia in the cuff/jpouch and need advancement of the mucosa and my stomach has to go. the entire thing. total gastrectomy. not in the same day thanks for thinking of me and asking --len [ more ]
Michael K Hi Len, Any update on your status? Praying for you tonight. [ more ]
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J-Pouch ForumsFAP Forum
Whipple with J-Pouch
S Shamrocksue60
Len78 im surprised your dr wants to operate on you with only low grade dysplasia and not high grade present i have low grade stomach dysplasia with a normal no polyped ampulla i have fap, im 45 with a single stage jpouch constructed on october 15 2001, so the jpouch is 22 im being followed at a cancer institution/hospital locally by an interventional gastroenterologist. we are watching me and i see a surgical oncoligist at u of p downtown philly. i would question this dr why he wants to operate... [ more ]
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J-Pouch ForumsFAP Forum
Cysts on butt/unknown with FAP
ksrksr
Len78 Ksr, im 45 and have fap. No experience with cysts though. Facing subtotal gastrectomy here next emr endoscopic resection is october10 had the scopes April 20th last and have had many ileal adenomatous polyps mostly sessile removed endoscopically its nice when I can talk to someone else with our disease. Len [ more ]
Len78 ❤️
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J-Pouch ForumsFAP Forum
Duodenum to remove
BorislavBorislav
ksr Did you find out any more information? What decision did you make? I have adenomas polyps removed every year from my duodenum. [ more ]
Borislav i want to ask something about whipple procedure(tips ideas) I had a consultation today with my doctor about Whipple surgery. He told me that there are two options, one is to operate on me to make a whipple surgery Remove part of pancreas part of stomach and duodenum However for him I am 30 years old so many organs to lose it is a crippling operation in most cases.. The second option is follow-up every 6 or 3 months and endoscopically to remove polyps He said the second one is risky because... [ more ]
SteveG That's something your doctor must decide, depending on how serious the manifestation of polyps is. Reading about that subject there is a possibility to remove polyps in that part of the small intestine during a gastroscopy. But only a specialist can say how to procede, depending on the scope and biopsy results. If you are unsure what to do you may ask for a second opinion. It is always critical to lose parts of the small intestine, as a recent post in this forum showed. [ more ]
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J-Pouch ForumsFAP Forum
My triglycerides are high
BorislavBorislav
Yay-pouch Elevated liver enzymes may simply be a result of inflammation. Removing the diseased parts won’t stop the fact that your body suffers and autoimmune disease, and you will have inflammation. Best to find ways to reduce inflammation- diet/ exercise,etc [ more ]
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J-Pouch ForumsFAP Forum
Liver and bathroom trips
BorislavBorislav
Sara Marie ❤️
SeattleJane Здравей Борислав, Приятно ми е да се запознаем. Използвам Google Translate, за да отговоря, защото не чета и не говоря български. Съжалявам да чуя за трудностите ви. Вие не сте сами. Всички ние сме минали през това и то е объркващо. Да, нормално е да ходите до тоалетната много, много пъти на ден и да сте зачервени, възпалени и раздразнени. Това може да се подобри с течение на времето, тъй като тялото ви се лекува. Тялото ви е преживяло много. Печелите ли тегло обратно? Надявам се, че други... [ more ]
SeattleJane I ran Borislav's post through Google Translate - it is in Bulgarian language. Unfortunately, I do not know how to answer him since I am not familiar with his issues. If you DO have a reply, you can reply by going to "Google Translate" and entering English to Bulgarian Here is the translation: Hi everyone, I have two questions.. For asking and helping. Yesterday I was at the PAUHOSCOPY clinic. The doctor told me the bag was very good. I only have two polyps, one is removed for biopsy, the... [ more ]
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J-Pouch ForumsFAP Forum
Whipple surgery at 30 years question
BorislavBorislav
Len78 No I didn’t drink anything . Lol borislav. my doudenom was just clean of polyps I have polyps carpeted in the stomach though. Diets don’t reverse fap its inherited a defect occurs in chromosome number 5 .. a mutation and error in the genetic code causes the illness to manifest. len [ more ]
Borislav What did you drink to make your duodenal polyps go away after you gave up whipple surgery or did your duodenal polyps go away on their own just by dieting [ more ]
Borislav Why cannot remove only duodenum not other parts.. Is have surgery to remove only duodenum? [ more ]
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J-Pouch ForumsFAP Forum
Long term prospects of J pouch and FAP
S Scaramouche
BillV I have FAP and had a J pouch for 26 years and a malignant polyp was found near the anal sphincter and successfully removed. The surgery compromised the inner sphincter. Six years later, high grade dysplasia was found in the same area and pouch removal was recommended. Since I strongly did not want an end ileostomy with its associated issues, I opted to get a continent ileostomy, a procedure that does not require having an external bag. The procedure being performed in the USA is the Kock... [ more ]
Kushami @Scaramouche , I’m not sure what happens if a j-pouch gets polyps, but if it fails, yes, you have to go to an ileostomy. Sometimes they leave the j-pouch in place, but usually they have to remove it. If you live somewhere with expert surgeons (e.g. USA), they can sometimes fix a faulty j-pouch depending on what’s wrong (called a revision) or even create a whole new one (called a redo). [ more ]
ksr Lauren, removing polyps from the rectal stump isn’t a problem, as long as you stay on top of it and get it done. I don’t want an ileostomy or any other hookup if possible. If I were told I had rectal cancer or the polyps were changing in less than 6 months, I could see the reason to change to a different output way. [ more ]
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J-Pouch ForumsFAP Forum
Thoughts on desensitization
ss1983ss1983
witsnd ❤️
witsnd I have 3 adult children and I would agree they are desensitized, and sadly one is a hypochondriac. He has wasted thousands on testing year after year and he’s only 30. [ more ]
lcolche My kids (now young adults) seem to be very desensitized. I have had so many ER visits and hospitalizations over the years since they were young children, that they don't seem to have any reaction or worry whenever a medical incident happens to me. It is a bit insulting but I tell myself it is "normal" to them or maybe a kind of emotional defense that they developed over the years. [ more ]
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J-Pouch ForumsFAP Forum
Whipple Surgery after previous Pancreas Sparing Duodenectomy
MF Mike FAP PSD
Sara Marie Well, that's better news than seeing a mass. I hope someone will comment who knows about/has experience with the Whipple surgery. [ more ]
Mike FAP PSD In last scopes at CC had high grade dysplasia in upper GI and pouch. They will look for cancer during surgery but CT scan did not detect any mass. [ more ]
Sara Marie I had to look up the Whipple Surgery. It sounds so sweet, like someone should be telling you not to squeeze the Charmin, but when you read up, it sounds scary. Is there cancer? [ more ]
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J-Pouch ForumsFAP Forum
How long did you use wipes/cream?
B Bubba1028
LindaP I carry wipes in my purse along with Calmoseptine Ointment (if needed). I use wipes every time I go. The ointment is a paste and it's wonderful. Even good on irritated hemorrhoids. Been doing this for years and will continue. [ more ]
tf I use A&D plus a hydrocortisone cream. I have a bidet and couldn't live without it. I think it's a life long use. [ more ]
Bubba1028 Unfortunately I can’t install a bidet at work since I work at a university. But I’ll just carry a purse to and from the bathroom I guess. Just wondering if it’s normal. I’m using my daughters Triple Paste cream (diaper rash) and it works like a dream. [ more ]
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J-Pouch ForumsFAP Forum
How much blood is too much blood?tmi?
FAPqueenFAPqueen
tf I have blood periodically since my j pouch in 2013. My scopes where always good and they concluded it was hemorrhoid's & inflammation. No cancer with biopsies. In the last year it only happened 2x. It's good you are scheduled for a scope. [ more ]
PouchLogic It could be nothing to worry about but you should definitely bring it up with your doctor. It certainly isn't normal. You may just have a hemroid or something else but you shouldn't be bleeding. Even with pouchitis I don't have blood. [ more ]
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J-Pouch ForumsFAP Forum
Whipple Surgery
MF Mike FAP PSD
Mike FAP PSD I was 26 years old in 1987 when I found out from rectal bleeding. At that time I already had polyps in my duodenum. My 3 children all had colons removed at 19 and already had polyps in duodenum. [ more ]
ksr What age did you find out you had FAP? What age did you start growing adenomas polyps in the duodenum? I didn't start growing the polyps in the the rectal stump and duodenum until I was about 36. I had my colorectal surgery when I was 29. Found out I had FAP when I was 28 when i noticed rectal bleeding. Currently get scoped once a year except one year it was twice when one of the polyps had changes to it. [ more ]
Mike FAP PSD Yes, I have an aggressive form of FAP and I just turned 60. A PSD is a pancreas sparing duodenectomy. I needed that because of the polyp burden, size, and high grade displaysia pathology in my duodenum. After 16 years the Polyps have regrown in my new duodenum and are numerous and large again. IF Cleveland Clinic determines the risk is too great they likely will recommend a Whipple surgery. I am scoped at CC 2 times a year. My sister is 50 with FAP and just had a PSD at CC this past June for... [ more ]
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J-Pouch ForumsFAP Forum
30 Years with FAP
R Raychee
ksr Rachel, How is everything going? I know you haven’t posted in two years. I have a rough 3 years at the beginning of my jpouch. karen [ more ]
Raychee ❤️
Raychee Hi Laura, Because I currently am dealing with a family emergency, I am going to do a quick reply just now. Then when I have more time, I shall do more detailed response. My quick answer in go for the pouch, things have greatly improved in that department In The last ten years. Then as you will have a temporary stoma for a while, before take down is done, you will have gained experience of living with a stoma and how you feel about that. The option of a permanent stoma is always an option for... [ more ]
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J-Pouch ForumsFAP Forum
I beg you to help me. I burn a lot
arash.charash.ch
Caty Besides what others above have recommended, have you considered purchasing a portable travel bidet to soothe the burning and help keep the area clean when at home or when using restrooms during the day? They sell them on Amazon. Caty [ more ]
JJinLA Here is what works for me: 1. I take Imodium to slow down my gut. 2. I drink cultured buttermilk to change the ph and restore normal flora 3. I use a salve called Calmoseptine. 4. I use Metamucil powder mixed in milk or ice cream to bulk up my stool. 5. I do not eat fried foods very often. Keep a food diary. Some foods will trigger you to have liquid stools. For example, I do not eat blueberries. hope this helps [ more ]
Former Member Assalamualaikum Warahmatullahi Wabarakatuh Diaper rash cream: Convatec skin barrier cream is great. Also: Lidocaine topical cream numbs the area, that works! [ more ]
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J-Pouch ForumsFAP Forum
Has anyone experienced small bowel obstruction post op?
Jpouch1064Jpouch1064
JJinLA I agree with Jpouch1064. I did have a SBO like decades after my one stage colectomy with Jpouch. I had to adjust dosage of Metamucil and Imodium to an as needed basis. Our bodies change as we age. [ more ]
skn69 I've had a k pouch for 35+yrs and never expereinced a bowel blockage, occlusion or ileus before 2007. I had had over 20 major abdominal surgeries in that time. In 2007 I had my 1st ileus post-op (your intestine seems to not want to wake up and you can keep nothing down)...since then I have had numerous incidents with blocages and have even had surgery for it. (a loop of small bowel was imprisioned by adhesions)... I think that our guts can slow down over the years, they can get filled with... [ more ]
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J-Pouch ForumsFAP Forum
Dr. James Church moved to NewYork-Presbyterian/Columbia University Irving Medical Center
E ET_RN
ET_RN Thank you so much. The colorectal division is truly trying to form a center for IBD and Cancer expertise in surgery, Interventional radiology and GI specialists. Dr. Kiran, Dr. Shen and Dr. Church all worked together for over a decade at Cleveland clinic and now are happily together again [ more ]
Former Member Thank-you for letting us know dear and taking the time to post it [ more ]
Former Member ❤️
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J-Pouch ForumsFAP Forum
1 year after jpouch
BorislavBorislav
Midnight Lady I go a lot as well. Sometimes, it is never ending and yes, it can be exhausting. Start keeping a diary and try and figure out if certain combinations of food help you. It is not the same for everyone but for instance, if I eat a starch with other food, it seems the starch (in most cases) absorbs some of the acidity of foods and causes less burn. I also have found that some foods can be eaten in small amounts by themselves but if I eat more than a small amount of that particular food, I have... [ more ]
Former Member I go 13-20X a day and its been 6 years, maybe you are just meant to go that much to be honest. [ more ]
arash.ch hi to every one 3 years ago doctors saye i have fap and i surgery for remove all the colon for 1.5 years i have ilestomy .(leaking of pouch for 1 years) after that the leak is stop and close the ilestomy in this 1.5 years i burn very very each time i used gell of ledokaeen but some dayes is good some days is very very bad i eat tea suger .Lavash Bread (iranian withe bread ).peanut butter . and many things dear borislav wath is your problem ?? who your burn is stoped??? i burn for 1.5... [ more ]
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J-Pouch ForumsFAP Forum
Jpouch problems
FM Former Member
JPouch_2016 https://www.j-pouch.org/topic/...2#642383336278969852 FRH: Thank you for your food advice, sometimes I wonder if I can have anything to eat that will not cause symptoms. I going to try your suggestions. [ more ]
Former Member Oh thanks for your responce! Im gonna try and book an appointment to speak to my surgeon, though corona isnt allowing face to face appointments. Idk why my pouch is doing this, ive had my jpouch for 6 years, and im currently living with my loop ileostomy (had it for a year and im not having it reversed due to desmoid tunours causing bowel obstructions). Im eating "beige" food (white carbs) and wouldn't think diet would affect mucous prodiction and the irritation im having? I have had no... [ more ]
FRH I certainly wouldn’t just go by what this nurse said. Make appointment with surgeons office or GI specialist and be persistent in asking to speak with them and don’t be dismissed. I also do irrigation a few times a day just to help with any irritation of incomplete emptying. Konsyl brand fiber is the absolute best. Calmoseptine ointment for skin (burn itch) is about the only one that has both calming and healing ingredients) and is thick enough to protect. Food tips. Pasta, rice, potato,... [ more ]
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J-Pouch ForumsFAP Forum
Jpouch bud or.something else
BorislavBorislav
Bobish This could be mositure related. The area needs to be kept clean and dry. Washing with water each time is not good for the skin. The skin needs its natural oils and if you wash them away it will get sore A cream like Calmospetine is good, but not as good as clean and dry because cream can trap bacteria and moisutre close to the skin and cause an infection too. I only use cream when im really sore or itchy. If you have hair there, you could shave it (hair traps moisture and dirt too), if you... [ more ]
JHendrix Hm. I don't have any ideas. Maybe others will. Is it something you can show a doctor? if it's something that comes and goes maybe taking a picture could help the doctor to diagnose. Good luck to you. [ more ]
Borislav When.touch buds.but.very hard.buds and dissapear last year now.I.have them back [ more ]
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J-Pouch ForumsFAP Forum
Passing on the gene
FAPqueenFAPqueen
skn69 Rachel, As a child and early teen, I had a lot of surgeries and tests. Hours on end of x-rays and what amounted to radiation treatment between age 10-12...by then I was freaked out seeing all of the nurses and techs running behind walls and putting on lead aprons and shields while I was flat on the table practically naked and being bombarded. I asked to see an ob-gyn, something that shocked them all. I was frightened for my fertility. (yup, at 12...I was that kind of kid). She was kind and... [ more ]
Raychee I know this it is a long time since you posted, but I am not internet savvy, and only have iPhone and joined this site six months ago. Regarding pregnacy after surgery:- My Mother had her First surgery In 1959 at age 21, and in those days the only option was permanent ileostomy. Which at that time was about a 3-4inch opening kept open will a brass ring, and she had 2 reusable bags which she used for thirty years. She had no aftercare no checkups nor to many problems until 30 years later when... [ more ]
skn69 Thanks Laura, I support everything that you said. We cannot (although we would like to) control what type of genetic code we pass down to our kids and even when we think that we have we may get something completely different than expected. We should not feel guilty about wanting kids and having them naturally. Anyone that tries to shame you for having made that choice should be publicly flogged with a rubber chicken! I do not think that my parents expected a kid with so many problems but... [ more ]
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J-Pouch ForumsFAP Forum
Ileostomy
CariCari
BillV 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... [ more ]
TE Marie 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? [ more ]
Cari 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. [ more ]
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J-Pouch ForumsFAP Forum
Weight loss
CariCari
PouchLogic You are likely going to loose some weight due to surgery, prep and recovery but the pouch doesn't weigh much. I imagine that provided everything goes well and you recover quickly and are able to start eating normally your weight loss would be minimal. That being said it depends on your body and you, I can loose weight fast just by missing a meal or two. The other thing is that without the jpouch food can travel faster through so you may not absorb as much nutrients. [ more ]
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J-Pouch ForumsFAP Forum
FAP -J Pouch pros cons and experiences
FAPqueenFAPqueen
Cari I was 19 when I had a total colectomy with a temporary ileostomy for 6 months and then a Reversal to a j pouch. I am now 43 and am just now at a point of loosing the j pouch to an ileostomy. I had thousands of polyps and did not want to take a chance of having cancer as I was told at that time in 1994 that there would be a high chance of cancer If I did not have the colectomy. I was able to work day care for my cousin after about 2 months as my recovery process was rough. I ended up with a... [ more ]
luv2laugh I had my surgery at 43 for FAP. My preference was to get it taken care of and done, before I developed cancer. I didn't trust that any doctor could reliably monitor the number of polyps I had. In my mind, the only option was which surgeon, hospital and pouch method (stapled or hand sewn). I was scheduled to be discharged from the hospital after six days but they discovered a blood clot and nutrient malabsorption which extended my hospitalization to 16 days. I think I took approx 2.5 months... [ more ]
FAPqueen Thanks for the responses. My surgery consultation is on the 2nd of October and I will know when my surgery is booked then. I refuse to sign or agree to anything until every one of my question has an answer but I have been told by other doctors she is the best female in the field.. she’s just a total B-Word. not totally prepared to leave my job for a year, that’s going to be really hard. My boss is going to treat it like maternity leave so my job will be waiting for me to come back- but as I... [ more ]
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J-Pouch ForumsFAP Forum
Newly diagnosed with FAP facing 2 part surgery
S SBL3
Shannon1234 Hi, I'm sorry you are faced with this life changing medical condition. You must be very scared, especially having children and so many other concerns. I had a complete colectomy and a J-Pouch installed when I was 20 year old (27 years ago). Maybe surgery is easier to handle when we're young and have less people relying on us to be well. I know this is not the case for many people on this site, but my quality of life completely improved after surgery. The first surgery is major, and recovery... [ more ]
BillV Sara, let me begin by saying that the majority of people with J pouches do better in terms of pouch function than I did. I averaged around 12 bathroom stops a day, had butt burn , leakage and did have to watch my diet a bit. I learned over time how to get the best with what I had, knowing that the last thing I wanted was to get stuck with the bag (pun intended). I remember skiing all day at Vail, Colorado and deep sea fishing in Cabo San Louis, Mexico without a bathroom break. Although I had... [ more ]
CTB23 I did not have FAP, but my ulcerative colitis came on very quickly in April 2015 and by November, I had my first of 3 surgeries, two different ostomies (an end and a loop) over 9 months with the final takedown. I have done pretty well and find I am able to do most things I did before my j-pouch. I think my biggest complaint is that I sometimes have leakage, but not a lot and usually because I waited longer than I should have to make a bathroom trip. There are other minor inconveniences as... [ more ]
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J-Pouch ForumsFAP Forum
First time fistula with peri-rectal abscess in 34 year old pouch rectum
H Heather1518
Jaypea About A year ago I suddenly developed increasing pain in my bottom and a funny lump. My GP looked and said it seemed fine. The pain got worse and I just thought it must have been what I was eating. It wasn’t until the pain got unbearable and I was incontinent of stool at night (x2) that I went to the ER at the hospital where my surgeon works. I got IV dilaudid, a stat MRI and was admitted for an urgent incision and drainage of a peri rectal abscess and fistula. I do not have any form of... [ more ]
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J-Pouch ForumsFAP Forum
uveitis
mariaemariae
Al Wilk Psoriatic Arthritis . [ more ]
mariae what is is psa? I hope you keep well too and I will defo keep on top of this uveitis take care thanks for the info very much appreciated. maria [ more ]
Al Wilk We are far more prone to get Uveitis than the general population . I have Psoriasis and Psa which are also risk factors . Steroid eye drops will help . Good luck and stay on top of this . [ more ]
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J-Pouch ForumsFAP Forum
Bloody Stools ??
FAPqueenFAPqueen
BillV Significant blood in my stool was what led to diagnosis of FAP following a colonoscopy. Although there were hundreds of polyps, none had become malignant. While your situation is not an emergency per se, you need to have surgery before one or more of the polyps becomes malignant. Keep trying to contact your doctor and select a surgeon who has done many of the procedures that you select. [ more ]
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J-Pouch ForumsFAP Forum
Tired and depressed and sick
Summer LilySummer Lily
Brian B Tampa Also, my fatigue has been so bad that I usually just rest all day and use the bathroom. Any time I eat I pay for it with diarrhea. I run the risk of having an accident if I go anywhere. My quality of life is far worse than it was before the surgeries. [ more ]
Brian B Tampa I don't know what new things I may have, my doctors have not been very good at following up in seeing me or in reviewing my test results. Since my reattachment, I have had terrible diarrhea and also developed a terrible hernia. They scheduled surgery but since the diarrhea was so bad they did a bunch of tests. I tested negative for C-Dif but they did not give me results for any other tests. Neither my GI nor my surgeon have followed up and called back on a dozen calls to their offices to ask... [ more ]
Kevin Lacombe Hi There, I know its a little late for a reply but I fell on this post and wanted to share the pain and also to share a word of encouragement. I have Gardner syndrome with high grade dysplasia for the last 5 years even thought I have had the "Surgery". I also have both of my daughter with Gardner Syndrome. I have my 9 years old daughter that was released this week from here first phase of the IPAA operation. She currently has a temporary ileostomy and she hit every complication possible so... [ more ]
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J-Pouch ForumsFAP Forum
Kidney stones and surgery for FAP
E Evan
skn69 I wouldn't have believed it if they hadn't told me about it and the fact that he sort of guessed which neighborhood that I lived in was freaky...they have statistics according to the neighborhood... Spring water is fine, even if it has a minerally smell it could just be iron, which is pretty common in Well water and spring water depending on which rock formations it flows through... I have been filtering since then and have a built-in filter in my fridge too..ditto for hubby and what he... [ more ]
BillV Thanks for the heads up on water, Sharon. We live in the northwoods of Wisconsin and get our water from a well that is 825 feet deep in bedrock (long story). I guess that I have been lucky for the 7 years we have been here and drinking the water that has a distinct mineral taste that I hardly notice anymore. Although I had a kidney stone attack when living in Milwaukee, I have had no problems since, but do drink quite a bit of water. Undoubtedly, some people are more susceptible to kidney... [ more ]
skn69 Evan, Kidney stones seem to be a major problem for many of us...I had my first bout about 20+yrs ago...thought that I was dying...Didn't know that that sort of pain existed. The first thing that the ER doc asked me was where I lived. Then he told me that I was in a hard water district and to stop drinking or cooking with strait tap water and to start filtering it with a Brita sort of system. Immediately. He also told me to stop drinking mineral water (duh) due to the mineral content (double... [ more ]
See all 5 replies...
J-Pouch ForumsFAP Forum
New with FAP and due to have surgery in June
J Jennga
Angie Wilson It's great for you guys to have other young people to talk to - no offense taken by this 54 year old! I remember being 20 and someone in their 50s was someone on another planet!!! Plus, so much has changed in terms of how surgery is now often done in one step etc. We all want to relate to our peer group - that never changes. Good luck to all young j pouchers and as the years go on - it will get better and better - and then one day, offspring will have the gene edited out or something and no... [ more ]
LeahD I absolutely feel the same way. I'm also the youngest person in my family to have the surgery, but it's only been passed down to one person per generation so far, and I'm only the third. Likewise, welcome! It may be a shitty club, but it's great for post-surgical puns If you ever need to vent or talk or have any questions, or if you just want to talk about something else, feel free to message me! I'm happy to connect! [ more ]
FAPqueen Hey! I'm recently diagnosed as well, on the aiming list for my jpouch! I'm 20 years old and no offence to any of our older members but it's almost comforting to hear another young person joining the FAP club. I'm the youngest person in my family to get my surgery so that definitely doesn't help ! So welcome to the club, sorry it's not a cooler club to be in lol Hope to talk to you! [ more ]
See all 26 replies...
J-Pouch ForumsFAP Forum
New Member, upcoming surgery.
L Lisa1989
LeahD Hi there, Lisa! Hope this finds you well. I was diagnosed in 2014, had my surgery in 2015. My polyps were similar to yours; my entire colon was completely covered with small to large polyps, no dysplasia. I met with the surgeon who did my mom's pouchitis surgery in 2001, then a second surgeon who works closely with my GI doctor. Both had different plans: one wanted to do laparoscopic, which was fairly new at the time, and should take about three hours; the other wanted to do laparoscopic and... [ more ]
Lisa1989 Thanks Bill and Bobish for your replies. I have had one surgical consult with Dr. Rehnke myself and am impressed with the BCIR procedure and he said I would more than likely be a candidate for any of them, however once they get inside things could change due to internal structures and or issues. Luckily he is just about 30 min from where I live here in Florida. I am meeting with Dr. Julian Sanchez who is at Moffitt Cancer center on the 26th of this month for his medical opinion on which... [ more ]
Bobish Your physical size determines how much rectal cuff the surgeon needs to leave in. Im a thin guy so apparently he could leave minimal cuff. Surgeons like to remove as much cuff possible of the colon comes out, because it's part of the colon and can be subject to further disease! It sounds like that would be a call for your surgeon for your specific circumstances possibly even while your in the table,. But if your real thin my understanding is they can basically get rid of all the rectal cuff. [ more ]
See all 4 replies...
J-Pouch ForumsFAP Forum
Jpouch asking
BorislavBorislav
EricaLeeJpoucher When I eat eggs, it slows down my j pouch and makes my poop not that acidic. Maybe you could try eating eggs. Also for butt burn conditioner helps me. Once I put it on my butt I wait a few minutes or so and there's no pain or butt burn. [ more ]
Borislav nothing to slow doctors not give meds to drink. for slow only eat potatoes pizza chicken rice pasta [ more ]
Jan Dollar Beer and wine do not damage the pouch, but may cause increased diarrhea while you are adapting. What are you taking to slow your gut? Your frequency is high, even though you are in the adaptation period. Jan [ more ]
See all 16 replies...
J-Pouch ForumsFAP Forum
Dilemma choosing where to have surgery in UK.
E Evan
BillV Evan, I was diagnosed with FAP in 1981 and was one of the first to have J pouch surgery at the Mayo Clinic in Rochester, Minnesota. I am not familiar with surgeons in the UK other than Dr. Ed Wescott in London who has just started doing BCIR surgery. I believe he also does J pouches. I met him at the Quality Life Association’s annual conference in Florida last fall where I was a speaker. He is a fine surgeon who is very patient friendly. You should have your surgery performed by a surgeon... [ more ]
See 1 reply...
J-Pouch ForumsFAP Forum
Pain have where was the ileostomy and dirrhea
BorislavBorislav
Borislav the scar is red i think scar is sometimes hot sometimes normal no is not bleeding [ more ]
Winterberry Hello, Borislav. Sometimes I can have a mild pain at my old ileostomy site. I am 1 year after reversal. It is healed completely, only a light purple colour, but if I move a certain way it can give me a sharp pain even now. I think it is my scar tissue or adhesions. You are early days so your old ostomy site inside is still healing. Some people heal faster than others. So much happened at the ostomy site so it may take more time for scar tissue to soften and the swelling to settle down. My... [ more ]
Winterberry Hello, Borislav. The burning acid that you are feeling is from bile. Everyone produces bile. J pouchers suffer more burning from the bile because we do not have the big colon to hold / neutralize the bile acids and we go to the bathroom more than people who have a colon. The job now is find a way to make your stools more solid, and not so many times, so it does not burn so much. Food choices will help, and so will Immodium. Are you able to see or talk to your family doctor about pouchitis? [ more ]
See all 5 replies...
J-Pouch ForumsFAP Forum
Weight
M Mmtaylor4642
Sbevin I have MYH-associated polyposis, MAP. It is similar to FAP. The doctor could no longer keep up with the number of polyps I have so I had a total colectomy on 6/15 and my takedown on 10/15. I can't believe that it is almost two years since my surgery. I went for two consultations with surgeons in and near Philadelphia. The surgeon at Penn had told me that she didn't even want to leave any of my rectum. She wanted to take out everything and sew up my anus and I would have an ostomy for the... [ more ]
SonnyJ215 I was diagnosed last September with FAP never heard of it before knew nothing about it all I know is I had over a 100 polyps in my colon and rectum and required to be removed so I search for the right surgeon in Philadelphia I went to HUP hospital in November to meet with her and had my colectomy on 12/15/15 I was on the ileostomy for 9 weeks and had my reversal takedown on 2/19/16 I'm very grateful to be off the bag but I would have never thought that recovery of the takedown would be so... [ more ]
TrishD Make sure you get your Thyroid checked. There is a connection of Thyroid disorders and FAP. An underachieve Thyroid can cause weight gain. If you're tired, always cold... Those are some of the signs of H ypothyroidism. Been there. [ more ]
See all 14 replies...
J-Pouch ForumsFAP Forum
Life without a colon- consuming spicy food?
J Jennga
skn69 I have a k pouch...spicy doesn't affect me on the exit as much as you guys...my stoma gets irritated but unless I really overdo it or go on a 1-week binge (holidays) I am reasonably satisfied...That said, I have had mine for 38yrs...things used to get hot, irritated and burn...now, like the others, I find that spices go well with yogurt or milk or coconut milk...it cuts down on the burn...lemon also helps (counteracts the acidity somehow)... Give it time or use in moderation. Sharon [ more ]
Bobish Yeah 6 months from JPouch my tolerance seems to be improving too. I used to pride myself on being able to eat any food, on holidays in local restaurants i often like to ask the waiter to 'surprise me' with their favourite dish, and it not needing to be toned down for me. Since the op i struggled with anything, even if just based on curry powder, but recently I've progressed back to medium strength spice. Basically the hot Chinese dishes or the medium Indian Curry's. Something like a... [ more ]
Annikki Time...over time my tolerance has increased. Making sure you eat something that absorbs some of the spicy or balances out the spicy. I add yogurt and even cream cheese to spicy curry eaten on rice noodles. Coconut milk in Thai curry again eaten on rice noodles. Salsa mixed in cheese dip with tortillas. I have more issues with oranges and orange juice than I do with spicy. [ more ]
See all 3 replies...
J-Pouch ForumsFAP Forum
Jpouch Cream
BorislavBorislav
Borislav thanks! [ more ]
Winterberry Hello, Borislav. That's great about chicken and potatoes. I wonder if the acid in tomatoes, and the tiny seeds, are irritating your pouch. You will know if this is true when you stop eating tomatoes for a short time, and see if you have less bowel movements in a 24 hour period. I forgot to mention that if Metamucil is not available in your country, try to get some "psyllium" which is what Metamucil is made of. It could be the ingredient in another brand name. Or try to find psyllium in raw... [ more ]
Borislav chicken with potatoes no problem i eat no problem with that [ more ]
See all 24 replies...
J-Pouch ForumsFAP Forum
Some advice about night time jpouch
BorislavBorislav
Winterberry Hello, Borislav. The growling sounds you hear after eating is from food and air moving through your stomach and intestines. As soon as you eat, your intestines activate and move "old" food through to make room for new food. Ever notice how drinking morning coffee or eating breakfast makes you want to go to the bathroom? So air, food, gas make noises. I always hear noise after I've eaten, like whooshing sounds as my guts move and push food along. The itch you are experiencing at night... [ more ]
Borislav its takedown three mounths past after takedown ileostomy two stage operation connection to anus at 19 january 2017 musoctomy + jpouch resovoir (ileoanal pouch) its is normal that symptoms to tell where i post ? when eat after that my stomach make sounds like gruwling after eat is this normally and will takedown this and when hold its more is have sounds when going to sleep is sounds and when go to sleep is going to itch my butt if i not sleep no have itchs when going to sleep only is all of... [ more ]
Winterberry Hello, Borislav. Are you scheduled for takedown soon? [ more ]
See all 10 replies...
J-Pouch ForumsFAP Forum
How much time is need to form stools
BorislavBorislav
michaelc78 ❤️
michaelc78 I know I'm very early in my stage of jpouching its been rough for me the tho I don't know what to eat or drink because things make me run I'm afraid to eat or drink anything because of this I'm so frustrated Imodium or Metamucil has not worked to stop the watery stool I have been in and out of the hospital through both surgeries due to high output and blood clots and verious other things I've never had before the surgeon said the process is easy you'll be fine I feel like I got lied to I... [ more ]
Borislav Thanks, WINTERBERRY i go 10-15 times a day [ more ]
See all 6 replies...
J-Pouch ForumsFAP Forum
Thyroid Nodule - Cancer?
B BecMom
CTBarrister I am a thyroid cancer survivor. I had a nodule felt on my throat by PCP in May 2015. He told me like 1 out of 10 patients he sends for the ultra sound end up with it being cancerous and not benign. An ultrasound and needle aspiration biopsy confirmed I had papillary thyroid cancer. I had a thyroidectomy in July 2015 and they gave me the radioactive iodine 157 millicuries in September 2015. My scans since have all been negative and blood labs all look good. I am taking synthroid. Thyroids are... [ more ]
Jpouch1064 Thyroid nodules are very common in the first place. After my FAP diagnosis and surgery, I got with my endocrinologist and yes I had nodules. He has been following them for years. They have never changed on scan. I can only speak from my experience. I think the thyroid is something the docs keeps track of with FAP. I guess if one wants to know what is in those nodules, the biopsy tells all? anyone else had experience with this? I don't really know what the latest news is on FAP and the... [ more ]
jeane I just had this experience last week. My thyroid blood tests came back normal but I had a large lump on my thyroid in my neck. They did an ultrasound and needle aspiration even though the doctor felt it was benign as it was very uncomfortable for me. They drained blood and he said it was a cyst. They did send out the biopsy and I am still waiting on the results, but he felt very confident it was a beniign nodule and yes many people have them and are unaware they have them. He was not going... [ more ]
See all 4 replies...

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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