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J-Pouch ForumsMen's Health
Being gay with a j-pouch
L LIGuy11
Nuhorn This may need a new thread, but(t), any suggestions on plugs that work well, especially good sizes to start with? The array I see out there is pretty dizzying and some seem too advanced for beginners. [ more ]
LIGuy11 Yeah, one would think in a day and age when penises can be made into vaginas and vice-versa that we could at least figure out a way for those of us who are gay to have intercourse with a j-pouch. I guess there aren't enough of us to warrant any research into this... [ more ]
Former Member ❤️
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J-Pouch ForumsMen's Health
The Gay Guy Chronicles: Sex, Dating, and Life with a J-Pouch
Heath DHeath D
RHolt @iitm500, thanks for your honest response and describing your approach. I have a younger brother who had 90% of his colon removed (sigmoid remaining) due to Lynch syndrome and colon CA (we have that in our family) and he is gay. He has some mental health issues and I am not sure he will be in a relationship again, however, it is good to know that it is possible, even with a J-pouch, to be the receptive partner if he ever met the right understanding, caring person. I really appreciate you... [ more ]
ittm500 I’m very open about all of this so happy to answer questions. I started with smaller dildos and worked my way up. Half the battle is learning how to control your muscles and relax. It wasn’t until after 2 years of trying (keep in mind this was also several years after the actual surgery, so it was fully healed) I finally cracked the code and figured out what worked to relax. I just exhale and pretend the breath is going all the way down and out my butt lol. I don’t think any of it was about... [ more ]
Scoobshags ❤️
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J-Pouch ForumsMen's Health
Prostate Cancer Found in My J-Pouch!
J Jfill21
JimJimJimJim For anyone with a jay pouch who finds themselves with Prostate Cancer. I had a J-pouch fitted in 1995. In 2014 I was diagnosed with a large aggressive Prostate Cancer. It completely filled the right side of my prostate. It had also grown into the left side. It had also grown outside my prostate in two places, including up and around my Seminal vesicles. I had radiation and hormone therapy. 27 years after my J-pouch operation, and 10 years after my prostate cancer diagnosis, at age 79, my PSA... [ more ]
Jfill21 Just an update—I had the pouch excision/Barbie butt/permanent end ileo surgery two weeks ago. The procedure was performed at CC Main Campus; we live in Virginia. I have three words—“I am happy.” The surgery was a beast as everyone who has experienced it will attest. I went in strong and healthy, with the exception of the known presence of prostate cancer in my pouch. I was told afterwards that I had had very few hiccups given the complexities and opportunities for set-backs. I lost a liter... [ more ]
Jfill21 The saga continues--pouch excision surgery is in 5 days. I was in Cleveland yesterday for the pre-ops. I met with my surgeon, the stoma nurses, had an MRI and labs. I was told that my case was brought before the tumor board twice, plus consultations with pathologists and radiation oncology on the best way to move forward. Fortunately, the cancer was found on the backside of my pouch. Had it been on the front, next to my bladder, the surgeon was going to recommend removing it as well. That... [ more ]
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J-Pouch ForumsMen's Health
Sexual Function for Males who have had Jpouch Surgery
F Future_Jpouch_Patient
therealstinger thats funny, try Trimix injections , you will last 2 hours at least. lol [ more ]
therealstinger Yes I had issues from impotence and I started taking Viagra which helped a lot. Tried Cialis , they worked for awhile then only gave me a half erection after my body got used to those meds. Now I take Trimix shots and have no issues with the Trimix injections. Sex life is wonderful now. Its a choice of Cancer of removal of the colon replaced with J-pouch. Not all men get these issues after surgery. But I was one of the (65% guessing) that did get impotent. It was depressing at first until I... [ more ]
lavisingh204 Im a jack rabbit in the sack. its all mental [ more ]
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J-Pouch ForumsMen's Health
Anal sex after totally colectomy.
M mikethechampion
Chris Jones I would not. the chances are to high for damaging the thin layer of colon you have left where they reconnected you. You don't want to mess with something like that. [ more ]
Jan Dollar No, but she could certainly ask her doctor. She can also request copies of medical records. She does not have to have a specific reason. She could just say she wants them for her own file. It is not unusual for someone who had surgery as a child to have questions later in life. Jan [ more ]
mikethechampion yes she has had regular check ups but she honestly has no idea if she has a rectum or not and is to embarrassed to ask her mom. This may sound stupid but is that something she could check herself with a physical exam? [ more ]
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J-Pouch ForumsMen's Health
J-pouch and prostate cancer
J jdhalf
Former Member Glad your okay [ more ]
MikeEJ34 Thanks for the update! Not getting ahead of yourself and worrying is absolutely way easier said than done, but it’s still a true statement and one I hope you can manage to accomplish! 😊 We’ll certainly be praying for you! We look forward to your next update! God bless! ❤️ [ more ]
Pouchomarx Had my appt friday. PSA is now 2.78, and FREE PSA was 30% which is considered abnormal with Cleveland Clinics chart of 2.6. My urologist stated lets get PSA again in 6 weeks and if its any higher he could order a prostate MRI so we can see if anything looks suspicious. If anything is there and PSA goes up then consider doing a biopsy. He knows about my jpouch and cant do biopsy the normal way so said he doesnt do the biopsy but the interventional radiologists do them transuretheral. Actually... [ more ]
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J-Pouch ForumsMen's Health
J-Pouch And Prostate Cancer
M MikeEJ34
MikeEJ34 Hey Ed! Thanks for the update. Sorry to hear about the biopsy being positive for cancer. My father went through this process and successfully got a prostatectomy at the Mayo Clinic September 2020. You will prevail! We look forward to future updates! God bless, Mike 972-809-3640 MichaelEJohnson4@gmail.com [ more ]
Ed55 This is Ed. Going back to my original post, I opted for the transperineal route for the biopsy. However, even with this route, it is necessary to insert an instrument into the rectum/pouch to generate a real time image to merge with the MRI image. So for me, there was still the issue of having to insert an instrument that could be larger than the diameter of my anastomosis. I found a doctor at the Cleveland clinic (Dr. Z. Schwen) who was familiar with this issue and he was able to perform... [ more ]
Former Member ❤️
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J-Pouch ForumsMen's Health
16/8 fasting
B Blairisking
jerry v I do this, the exact same hours. I've found it also helps with less trips to the bathroom at night and nighttime leakage. The diet part work also. [ more ]
Former Member I would just be careful about blood sugar, vitamins/nutrients. and electrolytes! Especially hydration [ more ]
temoty Yep, I'm gonna start by not having any before noon. Only water until noon. Then, I'm gonna try not to eat any food after 8pm. So that should be about 16 hours per day without food. [ more ]
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J-Pouch ForumsMen's Health
Middle-age pre surgery
K krakt
PouchLogic I was 30 and had been very sick in the hospital for weeks at a time. No medication helped and I knew I had to do something. I had time to get relatively healthy before surgery which helped recovering, which I struggled with. I didn't like the bag and the adhesive didn't like me. Having a jpouch is definitely worth a try there are possible issues with everything, at least this way you can try and always go back. [ more ]
grr456 I was 50 when I had both steps of my 2 step process and I am 71 now. While it probably took me a bit longer than normal to heal since I was so sick to begin with and then my age, all has gone pretty well for me. Don't be afraid at 44....Just my .02...YMMV...grr [ more ]
CTB23 I had my first surgery at 60 and my last just before my 61st birthday. I have had good luck with my pouch. It has been over 5 years and I don’t have any significant issues. I do use Lomotil anywhere from 2 to 3 times a day and Benefiber. No diapers, though occasionally I have a little leakage at night. [ more ]
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J-Pouch ForumsMen's Health
Diet
A Aray
Jaypea I started a modified keto diet a few years ago. Not to lose weight but to feel better. Initially I cut out all sugar and carbs. Went full out keto. I lost too much weight but didn't miss the sugar or carbs. I learned a whole new way of eating. My joints didn't ache, I was sleeping better, my thinking was more clear. I now eat mainly extremely low carb and very low sugar for the most part however I am not against the occasional cookie or bowl of ice cream. It works for me and I have kept the... [ more ]
Sara Marie Intermittent fasting helps me feel better and it keeps my clothes from getting too tight. So I eat before 5pm and then don't have anything again until late morning. This provides the body with some rest. My colleague likes fasting for days, but I have never tried it. She swears it makes her feel great! [ more ]
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J-Pouch ForumsMen's Health
J pouch and DRE prostate exam
T Turp
New577 I only let my surgeon or GI perform my DREs. no once else is going up there. My Uro has never even asked to. He just checks my PSA every six months. Even he he wanted to I would not let him! [ more ]
R-JP4Life My surgeon (1995) warned against a urologist who wasn’t familiar with a Jpouch. His comment was they’d freak and make assumptions. I refused many who wanted to give Dre. I developed anal structure but didn’t know it because I hadn’t had a checkup in several years. I finally got talked into it after a warning of what he might feel. I thought I was being ripped open. The look on his face was so priceless it was almost worth the pain and short bleed. He just said wow I’m sorry. Never again... [ more ]
J Baru My Urologist also concurs.. relies on free psa for my monitoring [ more ]
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J-Pouch ForumsMen's Health
Chronic pouchitis and exercise.
C CharlesF
Lee-squire My friend I don't know what I can say to you. It's a different life for us it seems. I think you really need to enjoy the "good" days. It sounds like you are very active and I commend you with envy. Sleep is a nightmare, and key to energy levels. You obviously have immodium ? I use it religiously at night to try to fight off the night shift on the toilet. I just keep hearing that time is what it takes. But no idea how much. I don't even know if we ever get "good" again. It's a living hell... [ more ]
lholdem I am not a man so feel free to dismiss my input… but I relate to the desire to live life to the fullest after somewhat reclaiming my health after colectomy surgery. I was so happy and relieved to not be controlled by my symptoms, but also experienced simultaneously some new versions of depression and anxiety. Honestly I think years of dealing with chronic illness takes a collective toll on our mental and physical health, and it takes time to fully “recover” and recalibrate. And even feeling... [ more ]
ehbraun This could be completely unrelated, but i have a lot in common with your situation. So far, there is no real answer, but I’ve been focusing on sleep recently. My weight also fluctuates, and i do exercise. When I’m heavy, i experience obstructive sleep apnea. I was diagnosed with a sleep test, and got a c-pap. I found that something so simple as getting better sleep took the edge of of all these symptoms. I still have 10+ bowel movements a day, and wake up several times a night to go to the... [ more ]
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J-Pouch ForumsMen's Health
Rectal stump hurts and bleeds
M Mark473
Sara Marie Thanks for sharing. This is horrible. I feel like my sexuality was also reduced so much by this surgery. Nerve damage to my lady parts reduced my ability to feel and scar tissue near the anal opening has caused penetration to be similar to the first time much of the time, which is....uh...distracting. How many hymens can one person regrow? Yeah, docs don't really care. Half the time they seem like they don't think women should even enjoy sex! WTF?!? [ more ]
Sara Marie ❤️
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J-Pouch ForumsMen's Health
BPH Supplement
AP Al P
Al P I cannot be 100% sure as I did not ask that question. I’m always looking for natural alternatives to the meds. Perhaps it’s side effects that the meds could cause. I will remember to ask him on my follow up appointment. And I will report back. Al [ more ]
New577 Hello, Can you tell us why he prefers a supplement over avodart or proscar for bph. i have been on avodart for over a year and it has shrunk my prostate and reduced my PSA in half. Just curious so I can mention it to my URO when I see him. I don’t want to take avodart forever [ more ]
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J-Pouch ForumsMen's Health
Ultrasound guided transperineal biopsy and fusion biopsy
J JoeP
New577 TPC/IPAA is shorthand for total procto colectomy/ileo pouch anal anastomosis. I agree with you, the less invasive the better, as long as you can achieve accurate results. i assume you are on active surveillance and are following up as per your AS protocol. I have lots more questions, so if you want me to private message you I will. [ more ]
JoeP Hello Eric and thank you so much for your thoughts. My options are with two different physicians at two different hospitals. One in CT, the other in MA. Both physicians are non-committal. The location that does the stepper technique are not authorized to do the free hand. The doctor that would use the stepper technique has done this on men with a J-Pouch, he just hasn't done biopsy fusions on one with a J-Pouch. The free hand physician has done about 6. The upside is that both procedures... [ more ]
New577 Hello, I went ahead and researched the two methods. The literature seems to suggest that freehand will give similar outcomes to the stepped method. if it was me, and btw I have a bouncing PSA that runs high, I would lean towards the freehand. I have had over the last ten years, two trus biopsies prior to TPC/IPAA surgery and can’t and won’t have future similar traditional biopsies. please keep us up to date as this is a very important topic for some of us. btw, does your care team have a... [ more ]
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J-Pouch ForumsMen's Health
Diet/Supplements
B BrianBril
Santosh I have lost my weight approx 8-10 kg from last six months. Why this is happening I don't know guys. [ more ]
Santosh Thanks. Recently I have checked the blood sample of HB and B12 both are normal. But i fell very ill and weakness. If I am taking iron supplement on mouth then stomach is upset so i have decided to take through IV. Psyllium is working well for me. Please suggest if any good advice. [ more ]
Al P The psyllium fiber bulks the stool up for me. I think I was losing weight due to the watery diarrhea that I was incurring. [ more ]
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J-Pouch ForumsMen's Health
Weightlifting and Male Hormone Replacement
donn369donn369
Justcantlose75 Also because u have a pouch and that it’s made out of ur small intestine your small intestine is NOT made to hold stool so there for u must get it out of u ASAP so that means people DOUCHE your ass.. lol get it out of there ASAP and I PROMISE IT WILL MAKE A WORLD OF DIFFERENCE... [ more ]
Justcantlose75 Please take hormone replacement single blend cypinate or enenyhanate is fine stack with Decca or prope does wonders.. when U have uc. It lowers ur test count bring it to normal standards anywhere between 6 to 800.. plant base diet forsure oatmeal twice a day stay disciplined and all will be MUCH better... [ more ]
THE KID ❤️
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J-Pouch ForumsMen's Health
Severe Urinary Retention. I Need Help
J Jake54
MikeMinton Hi Jake. I am actually 6 years post reversal. But prior to that, I had had numerous back surgeries and was on high levels of narcotic pain medications all the time. Eventually, a combination of nerve damage and weakness brought on by the pain medicines caused me to be unable to urinate. I had to learn how to catheterize myself when I needed to pee. I was fortunate after a month or so and my bladder started working again. I don't know if that's an option for you or not, but it may be... [ more ]
Justcantlose75 Also IF ur mind is not on savage discipline mode it NEEDS TOBE because ur in the TOUGHEST FIGHT of ur life... so with that being said u need to ALWAYS be on top of WHAT WORX ........THE MOST.. take it and MAKE IT ROUTINE... HABITUAL.... your mind is right Then..... U ...JUSTCANTLOSE💪🏻👊💣😠😏 [ more ]
Justcantlose75 Well ONLY u know ur body.iIF YOUR NOT eating a ton of VEGETABLES,GREENS, OATS ,FRUITS.then MAYBE portion control, fish, chicken or turkey. THEN START THERE FIRST... along side a top notch gastro AND surgeon... if u did ur homework and this is the team u want on ur side then IMMEDIATELY SEE THEM... hope all goes well.. [ more ]
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J-Pouch ForumsMen's Health
Gaining Weight
BlokeBloke
Daleer It's so strange. I can eat almost nothing and gain a ton of weight. I wish I could eat the amount you guys do but I'd blow up to 300+ in no time. I actually think I absorb calories far better than I did when I had my diseased colon. [ more ]
Clyde My weight came back all on its own [ more ]
Anilet I'm also hitting gym regularly ..Which type of supplements you are taking..can u name it pls [ more ]
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J-Pouch ForumsMen's Health
Receptive Anal Sex after Left Colectomy?
N Nico08
noctmonster Hey there! I know this thread is a bit old but I decided to create an account here to help anyone out there might be reading this and who is or went through the same thing i did. So my J-Pouch completion was in June of 2013 and I met my first boyfriend on July that year. I always thought I would be a bottom so getting the surgery devastated me. So for the first year I always topped and at first even certain positions make your scars hurt. Along the way he started by inserting one finger,... [ more ]
skn69 A non-subject for k pouchers and end-ileo's with definitive closing but... goodness gracious, I cannot imagine the possible pain or consequences to the pouch...very hard lifestyle choice...give up an important part of your love-life or risk an important part of your pouch (those anal sphincters are not eternal...and are an integral part of a healthy j pouch). Sharon [ more ]
nikiki I was just going through my post history and came back onto this exchange. Holy hell. I nearly hear my j-pouch scream in pain even at the very thought of anything entering my backside. It may not be the same for everyone, but it seems I can even feel why my surgeon said not to have any anal entry, as it feels fragile, always mildly inflamed, and like my j-pouch could experience major damage with anyone coming in for a visit. And the skin breakdown, occasional acid ass, and butt burn doesn't... [ more ]
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J-Pouch ForumsMen's Health
J-pouch and masturbation/sex and pelvic pain
M Moe
PouchLogic There should be no issues. It may be due to scaring, like maybe something is being restricted because of scar tissue. I would definitely suggest talking to your doctor. If you really haven't been masturbating for a time it could also just take some time to get use to it. Did you have a open surgery or was it laproscopic? Having issues with errectile function is a possibility that I was warned about before surgery, although I was also told that it had never been an issue at my surgeons... [ more ]
LIGuy11 I don't know of any restrictions in regards to sex or masturbating with a j-pouch (for males at least). Definitely let your doctor know about this though. That's what they are there for, and don't be afraid to ask. They hear this stuff more often than you think. [ more ]
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J-Pouch ForumsMen's Health
Very strange symptom (?)
M MikeMinton
Former Member Interesting! I am glad you are okay though. [ more ]
MikeMinton Everything has been fine since I got out of the car. No I was not aroused. It was a very strange sensation. [ more ]
Former Member Oh my! Glad you are okay! Has it happened since you got home? I apologize for asking this but were you aroused at all? I hear some men just get like that sometimes randomly. [ more ]
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J-Pouch ForumsMen's Health
Exercise and leakage
D DanielR
Maxima66 Yes I too have this issue, I always ensure I have a bit of tissue paper between the butt cheeks and a pad in my underwear if I am going to do any activity. The honest best thing and it doesn't always work is to make sure you have some Imodium/Lomotil about half hour before and some form of food (but not too much) to help bulk it. I am a rock musician and play on stage for sometimes up to 45 minutes so I make sure I am well prepared as that's a work out and sweaty as all hell at times. I... [ more ]
chiromancer Somethings I didn't mention that I tried to help lessen the leakage in the 18 months I had the pouch: a cotton ball placed lightly into the anal opening and tincture of opium. These two things provided some help (not enough) Nothing else I tried really made much difference [ more ]
DanielR Thanks so much for this (sort of!!). More seriously, it's really helpful information. Yes, sounds very similar. I did have radiation prior to surgery, and pouch looks good in scopes, so I guess I may have to weigh up the pros and cons here of an end ileo vs life with the leakage. Thanks again, and hope things go well for you. [ more ]
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J-Pouch ForumsMen's Health
trouble adding weight
J jhennessy29
Cdub Yep, join the club! I struggle to maintain my weight, and have to eat a lot every day. If I don't, I can drop six pounds in a day easily. Weights and protein shakes help for sure. Enjoy being slim and being able to eat what you like! [ more ]
kemp Thanks Joey, I basically do the same thing as you. I must have an high metabolism. Will start the weight training again. In a way we are lucky. Who can eat avocodos, lots of butter (the best by the way is KERRY butter made from grasfed cows, which is better for us than the organic), Haagen Dasz Ice Cream and Lucini olive Oil, and nuts, without gaining any weight. Haha. Gotta go to lift some weights. [ more ]
JoeyJpouch Gaining weights been trouble. If you have a high metabolism it's difficult. The only way I can gain weight is if I eat the right foods, proteins, calories. And lift weights at the gym to gain muscle. Supplement with drinks and shakes too. I like foods high in fat that stay with me like avocados, olive oil, nuts. [ more ]
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J-Pouch ForumsMen's Health
Removal of Rectum J-Pouch & Sexual Dysfunction ??
MagooMagoo
Former Member ❤️
Magoo Thank you Doug .....I hope full function returns for you. My GF Just visited from Calif for ten days and it was great. She wanted to get some use out of me in case my surgery makes him go " Plop " lol I. have no definite date for the surgery so she might come to Visit again...all the way to Ireland . We've only known each other for a year and sex with the Baggie was just fine ...Great in fact so We both hope he works afterwards !! Magoo [ more ]
DougF I have a loooong story with lots of factors but here's the abridged version... I had a sub-total colectomy in 2011, delayed j-pouch decision until this year. I decided against j-pouch and had proctectomy surgery at the end of May. Previous to that I had my first girlfriend in 15 years and sexual performance was excellent. After surgery not so much. I could get aroused but couldn't maintain an erection and could ejaculate without a full erection. While it seems logical the problem is related... [ more ]
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J-Pouch ForumsMen's Health
Anyone had a prostate biopsy through the jpouch?
MN Mark N
MJL My husbands PSA levels are all over, 4 to 9. He has found that when his pouch is acting up and he has his PSA drawn, it is high. My husband after talking to his doc's and doing a lot of research, opted for a MRI rather than the traditional biopsy. Reasons why, risks of damage to pouch, less invasive, and lower risk of infection. He takes Cipro ans sometimes Flagyl as needed, which is a few times a week. [ more ]
danny Dud I also had a high PSA of 6.2. My Dr. went the route of Cipro (1000 mg daily) for Five Days, retest in 6 weeks. dropped to 5.4, so I had a 3 filtered lower body MRI with external magnet, followed by five more days of Cipro. Mri score was a 2 0n a scale of 1-5. Six weeks later had the 4k PSA blood test, score was a 7 on a scale 0-100. This test uses many more markers than the standard test. and yes my PSA dropped to 3.0, normal for me at age 71. Hope this helps. And yes my gastro said a... [ more ]
No Monty-- I had a J pouch procedure completed about 9 years ago successfully with no problems of pouchitis, etc. since. I'm now facing an elevated PSA--from around 3 in 2016 to 5 in 2017 jumping to 9.1 currently. I have not yet consulted with the surgeon who did the procedure but my gastroenterologist seems to agree that diagnosis by MRI is the way to proceed versus any needle procedures. At the end of your last post you refer to "New Urine Tests"--can you expound upon this? [ more ]
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J-Pouch ForumsMen's Health
working out
D darealfoo
Former Member ❤️
gonerunningshawn I used to exercise regularly weights and cycling before I became ill, I had a 3 stage op and have had a pouch since 2007. I got back into the gym a year after, I started a bit to soon and have hernia in my groin but it's not an issue. I always wanted to run a marathon so I trained myself, it was part of my journey post op dealing with the depression I had. I ran my first marathon in 2011, I have gone on to run many ultra marathon's and quite a few 100 milers. Exercise has been the key... [ more ]
Daleer https://www.youtube.com/watch?v=UzpggXWIryM I did a 615 raw squat tonight. I've had a j-pouch for 11 years (10 years since takedown). [ more ]
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J-Pouch ForumsMen's Health
Liquid vitamins
Corey1077Corey1077
Mike weather head B12 is absorbed through as far a I know ,under the tounge don't work for me,I just give myself a shot once a month I'd like to do it two weeks but insurance won't py for it,it's about$20 for three months [ more ]
rebel You can get B12 tablets that you place under the tounge so they get absorbed that way. They are labelled sublingual. But you need to check that they are working. [ more ]
Mike weather head Liquid vitamins are great ,I also need b12 shots I do myself b12i absorbed in the large intestine no by mouth or stomach ,when I need it m hands hurt incredible an after 10 minutes they don't an more energy, an energy is my pro lem [ more ]
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J-Pouch ForumsMen's Health
Retrograde Ejaculation
B bwils
F-TOY-120 Wow, congratulations Maxx, I cry every day cause I can't have child, I won't know what going to my kids recital, or ballgame. You are are very lucky, I wrote something in the women's health if you want to see. I had my take down surgery when I was 14 and now I am 41. I was robbed of children and performance. Google sex and the jpouch. It may explain better. [ more ]
TCM Maxx, congratulations! [ more ]
Maxx Hey I just wanted to let everyone know that, I had the same problem post take down for months. I had erection, was able to perform but nothing was coming out. But after 6 months or so the condition improved little bit and after a year or so, it is now restored. Only difference now is that the semen is now too thick than what it used to be. But I don't worry about it because we are expecting a baby soon! [ more ]
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J-Pouch ForumsMen's Health
Ran my first marathon!
R rocmicm
Kerrymareee ❤️
bwils Congratulations. I ran before my surgery (8 weeks ago) but have been nervous running at any significant distance because of the fear of having to use the washroom. I am curious as to whether you used the washroom during your marathon? Do you have any ritual as to eating before training so that you do not need to use the bathroom? thx [ more ]
JPouchCouple Paul, Great to hear you're doing so well, sir! I'm getting more active in the cycling/running community, and I'm curious, what does your typical daily diet look like? [ more ]
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J-Pouch ForumsMen's Health
Weak Urine Stream
T TSM
Nomoremeds Clearly the pouch does affect urine stream. I know it did for me, as it is much weaker now. [ more ]
lovedby2 Since my takedown in October 2011 I have always told my GI that it seems so hard to pee. I have to push really hard to go pee, which in return makes a bowl movement. So basically I pee only when I need to move my bowls. Dr has only suggested that it my be inflammation pushing against the bladder causing it to not evacuate accurately. [ more ]
Atop Hi TSM I've had my pouch for 25 years and the last 4-6 years my stream has become very weak. I am on a good deal of medication including oxycodone which my urologist feels is. Partial cause. Main problem is that the pouch and bladder are closely located and when I try to urinate it triggers the pouch to evacuate. I'm 47 and considering removing he pouch as I've Been struggling with pouchitis for a long time. [ more ]
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J-Pouch ForumsMen's Health
Abdominal Pains/discomfort
CC Charlie cbnice@verizon.net
Solomin Perhaps you have a narrowing. Speak to your doctor as this can easily be confirmed. Maybe a dilation will be the answer after proper determination as to what is causing the problem. [ more ]
marz This is an interesting web site about sibo. https://sibosurvivor.com/sibo-antibiotics/ It not necessarily about pouches, but gives good info about sibo. (Which according to Dr. Shen at cleveland clinic (my dr) says a lot of people with pouches have sibo. good luck! [ more ]
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J-Pouch ForumsMen's Health
Testosterone levels
D dhan88
Roland333 ok, you need a man's perspective who has a j pouch and is 7 years out exactly from this operation. it has caused major issues for me as well, but the opposite of what you are experiencing. It took only 2 weeks for my zeal to have sex come back, but my operation severely impeded my former abilities for an Erection, my first orgasm was painful all over down there, but as time progressed, it is now pleasurable. I have moved leaps and bounds since then, I have had to go and testosterone weekly... [ more ]
skn69 Ok, sorry...I didn't know. You are doing everything right...and no, this is not how it should be at the begining, middle or end of a marriage, no matter how young or old you are. You should not feel selfish...you are a normal, healthy woman who has desires and expectations...you are not being unreasonable. Like I said, reason has nothing to do with this. It is emotions, feelings and hormones. Hormone levels are probably playing a huge part of it... not sure to what degree...I have heard very... [ more ]
dhan88 Thanks for your post Sharon. I guess I should be a little more specific. My husband and I do still cuddle, we do still kiss, we do still give each other back rubs, etc...but it never leads to anything sexual. I have gotten to the point where I'm almost afraid to initiate anything sexual because I know more than likely I'll be turned down. It's upsetting to me that I can't even touch my husband in a sexual way. We are young, we have only been married for 4 months. Is this what I have to look... [ more ]
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J-Pouch ForumsMen's Health
Pain shooting out groin area..just sitting here..sometimes while walking
dgtracydgtracy
Jason.B Good luck with that. Make sure she is looking at you and doesn't mumble to her self and forget what you just said. Really make sure you hit home that it is something she needs to look into. [ more ]
dgtracy Thanks jan, will talk to her soon, should have an appt coming up [ more ]
Jan Dollar Yeah, when they build the j-pouch, there can be bleeding/swelling in the lower pelvis. This can take a long time to simmer down. Plus, scar tissue can get bound up with the nerves down there. It can seem to be worsening now if you are increasing your activity level, even if things really are stable or improving. The fact that this is positional supports this. Never the less, you should call your doc and let him know about the symptoms and let him decide if you should take the wait and see... [ more ]
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J-Pouch ForumsMen's Health
Fistula after J-Pouch resection.
FM Former Member
Former Member Hi Jan, Yeah sorry I didn't mention that I have had several attempts to close it. I'm under the care of a Urologist who has tried to "plug" it! What it is is that the surrounding tissue is quite damaged and may take a long time to heal. Having said that the fistula output of pus and urine does look less than before so I guess this is a good sign? I think I'm in for the long haul on this one! Hiren. [ more ]
Jan Dollar After this much time, it does not seem like this fistula would heal on its own. Has there been any talk of surgical repair, or is there a fear that surgery would possibly make things worse? I know he couldn't repair it at the time, but maybe now it is different? Might be time for a second opinion. You might get more response in the general forum. Jan [ more ]
See all 2 replies...
J-Pouch ForumsMen's Health
How long till a boner?
BD Blake D.
Dot2 Agree about talking to Doctor. Surgeon said to see urologist. Did not have problems after jpouch 20 years ago but recently has complete colon and tail bone removal I knew that cancer is more prevalent when UC involved. Never told about these side conditions. But lucky they saved rectum 20 years ago and NO regrets as there had been a 95% push to remove rectum then. Finding a good urologist is now the MAJOR problem. Live in Maryland [ more ]
badguts Don't worry your little buddy will not be kept down for long. [ more ]
Roland333 This isn't the case always for recovery. It depends on the operation, the age of the Jpouch recepient, and how well it was before the operation. I have had my J pouch since 2008, from having UC. It has been a traumatic event not being able to get a boner at a moments notice as before. Whether it is nerve damage or not, I am not sure, but what I do know is that with medical help like a pill, and with testosterone supplements, I am working fine now. However, being in my late 40's, other... [ more ]
See all 7 replies...
J-Pouch ForumsMen's Health
5 weeks post takedown... Odd peeing question. Plz help
S SonnyJ215
butmybutt I had the same issue. I would only pee when I had to dump out. I am about 2 years out from the take down of my ileostomy and have just recently have been able to stand up and pee without having a bm at the same time. I know this that the meds that I take, tincture of opium and morphine sulfate have a direct effect on my ability to urinate. I started to taper off the morphine sulfate and started to pee standing up. There have been so many changes in the way that my body changes and adjusting... [ more ]
Roland333 I am 8 years out, it took my body 2 years plus to adjust to standing up and peeing and then not having a BM afterwards or at the time. It isn't something that is immediate, it takes time, and I am betting everyone is different on recoup times as well. Hydration levels are key here, being consistent, watching your intake and when you drink are now PARAMOUNT to your recovery, and maintaining the ability to be stable. I had to create a regimen where I take in at least at a minimum of 60 oz of... [ more ]
John Curtain I just posted my story in the rant section of the J pouch forum. My experience is the same. If I stand and pee I need to have a BM straight away so I always just sit. I go to the toilet about 10 times each day so I seldom feel the need to pee as I am releasing urine so often.. [ more ]
See all 8 replies...
J-Pouch ForumsMen's Health
Lifting and my j-pouch experience
D Daleer
vince66 very impressive - I have had my j pouch 16 years and have been very lucky in that my life is the same as before I had the J pouch (well I guess better) - but who knows what the future holds [ more ]
Daleer https://www.youtube.com/watch?v=Gvr0vYtOH5g 725 deadlift done in training Saturday at age 45. 12 years into my j-pouch and no problems yet. I'm not on this forum much because I tend to be forgetful that I even have a j-pouch but I'm always available to my fellow pouchers if I can be of any help. persia6562@gmail.com [ more ]
vince66 I got my j pouch at age 50 - I'm about 6-1 and 185 and need to eat better (don't eat near enough fruits and veggies and eat a little too many sugary foods) - I do exercise some - mostly walking 15-18 mi per wk in nicer weather and when it gets real cold I do 40 min (4 mi) on an elliptical 3-4 x/wk / I also lift some : until my current age, 66, I would use 100 lbs of free weights and do a military press 3 sets of 10 w/ a set of curls (40-45 lbs) between each set - have some current health... [ more ]
See all 3 replies...
J-Pouch ForumsMen's Health
Long Distance Bicycling/Running
J JPouchCouple
Doc Edwards For long distance cycling, you may consider optimizing your fat metabolism. It is a bit complicated to explain in a post, but decreasing your dependence on carbohydrates could be a good thing and you would need to eat less. This might allow you to focus on keeping hydrated. A good place to start is the book, The Art and Science of Low carbohydrate performance and websites like www.vespapower.com have a ton of info. I hope this at least helps a little. Good luck! [ more ]
See 1 reply...
J-Pouch ForumsMen's Health
urinating after takedown
U UjohnjC
Erik R I have no advice for you JASON7316. But I love the Ferris Bueller reference. You made me laugh. Classic Comedy. Gotta find the humor in all this crap. [ more ]
Jason7316 I had my j-pouch surgery in 2000 and just discovered during a recent physical that I am retaining over 1,000 ccs in my bladder. I had no idea that I was so unable to empty and since my surgery was 16 years ago its not a new problem but my bladder has stretched out over time and I'm trying to get it back down before if fails completely. I just had a minor reduction of my prostate to try and increase flow and self-catheterise but am curious if anyone else has experienced this problem? I've... [ more ]
Rags After 26 years with the J-Pouch, I still sit to pee. Very rarely will I have a stand-up pee (unless I'm drinking a tremendous amount of liquids). [ more ]
See all 5 replies...
J-Pouch ForumsMen's Health
No subject
Paul HPaul H
arekwatson Erectile Dysfunction is the problem occurs due to lower erection, men who are not able to sustain erection may be suffered from impotence. There are various reasons behind this issue one of them is aging, it can be get cure but you must have consult your doctor. viagrapharmacyrx.com [ more ]
Raphaelo It would be a problem if you could not have the erection when you need it; that is, during sexual intercourse. As a matter of fact, I have sometimes the same experience. Some nights the erection is so intense that i wake up with fast heartbeats. [ more ]
Catinthehat "Take a deep breath and relax; this too will pass" Too funny, Jan! Wish I had a problem like this one. [ more ]
See all 4 replies...
J-Pouch ForumsMen's Health
RASH UNDER WHERE STOMA WAS AFTER J-POUCH
FM Former Member
CTBarrister A dermatologist can scrape the affected area, put the skin samples under a microscope and know in 30 seconds not only whether it is a persistent yeast infection, but the type of fungus as well. I would request that this be done so that the diagnosis can be confirmed. Until that happens apply an antifungal powder to the affected area. Zeabsorb AF is a good one. [ more ]
Former Member He gave me 2 tablets of Diflucan and then when it was still there, he gave me a topical ointment Nystatin. It has been sine 7/1/2012 and it has still not cleared up. My surgeon left the state and now his office is sending me to a dermatologist. What a hassel! [ more ]
CTBarrister What medication did he put you on and when? Was it an antifungal cream or a pill? If a pill it can take up to two weeks to clear up. I had to take several megadoses once a week for two weeks and I saw improvement in a week and it was mostly gone in 2 weeks. [ more ]
See all 3 replies...
J-Pouch ForumsMen's Health
Kidney Stones
mlisbergmlisberg
Raj I was diagnosed once with little crystal not exactly stones though. The doctor asked if I could drink alot of beer to clear it up and I did. Its funny coz I'd drink 2-3 bottles just to pee hard enough to get those crystals out of me. I did this 3-4 times. On my next visit I was clear of stones. But my doctor told me it wasnt permanent solution and asked me to increase my fluid intake to prevent stones in future. Also he asked me to stay away from spinach, beetroot and tomatoes , though I... [ more ]
bcirray The only thing that I can suggest to help prevent kidney stones is to cut back on drinking tea and eating chocolate, both of these items containing oxalate which binds to calcium and forms stones. [ more ]
BillV I have been taking Allopurinol (4 100mg tablets/day) for over 8 years to prevent recurrence of gout. This medication has not had any affect on my pouch. [ more ]
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J-Pouch ForumsMen's Health
my j pouch/ recived in 1992
ST steve the man
murf Have had my Jpouch since 1993 and have had issues every year with pouchitis but, ciproflaxin seems to keep it in check with no side effects for me. My main issue is having to dialate on a daily basis as the scar tissue over the years keeps closing down the opening. Scoping doesn't have a lasting effect either. I should mention that i am 69 yrs. old and still very active. I have my down days but, you have to keep fighting . These forums help and you see you're not in this situation by yourself... [ more ]
steve the man I was 32 when the j pouch was put in and now 56. [ more ]
See all 2 replies...
J-Pouch ForumsMen's Health
Erection after 1st surgery
ItsanewworldItsanewworld
Roland333 That is cool, I would just let him know that he is desired, hearing it, and being intimate are two different things. You can give him standard lip service with nice encouraging remarks, but I speak from experience, a guy wants to know by feeling you work WITH him, can't get any more blunt than that. If you back off to much, he will start to wonder? Am I not good enough, not man enough, not etc, etc. Most guys, not all, but they REVOLVE around this ability to please and be all that a guy can... [ more ]
klynan24 Roland333 I agree, I've been being aggressive but not overly, and although he doesn't get an erection right away, he eventually does. It's been 4 months since take down and he gets better every time. I've read where men who have this same issue find they have low testosterone and can get something to help that, but I haven't brought it up to him. I don't want him to be more self conscious than he already is. I'll give him a while longer and see how he does. Another symptom that he has of... [ more ]
klynan24 ❤️
See all 13 replies...
J-Pouch ForumsMen's Health
Erectile Pain
SolomonSealSolomonSeal
Nuhorn I’ve had painful erections since surgery and some performance issues. Most notably, there is a deformity to my penis. The middle of the shaft gets thinner slightly. I’m gay and have been able to enjoy sex but have a good deal of anxiety surrounding it. I’ve been to a urologist once who just gave me a viagra scrip and told me to wait and see. I will be going back, but not to that urologist. Has this happened to anyone on here? I’d appreciate any wisdom found on this. [ more ]
CTBarrister I had the Foley catheter but no such pain- only a short burst of pain, sort of a burning sensation, when the catheter was removed. I got an erection within 24 hours of that catheter coming out, and it was pain free. What I remember most was the tremendous relief just to have that first postsurgical erection, because my surgeon had warned me of the possibility of impotence and had STRONGLY recommended I bank my sperm. I felt like celebrating at that moment, but there was unfortunately nobody... [ more ]
Wes Safado It has been three years since my surgery and I had this problem and over time it has pretty much gone away. I think in general, it just takes time for all those nerves especially to heal. [ more ]
See all 4 replies...
J-Pouch ForumsMen's Health
Protein
K Keane
skn69 I have found that certain soya based protien powders turn my output to a thick, gluey gunk that does not seem to want to empty properly (have a k pouch and have to intubate to remove it...it is yucky). I would ask for samples from different manufacturers and see how each one works on you. I do better with Whey powder than anything else...there is also dried peanut butter that works nicely...nut butters are naturally full of high grade protiens and are easily absorbable. Sharon [ more ]
Daleer I don't know if it will cause problems for you. I've had a j-pouch since 2006 and been using protein powder for the last 8 years without problems. Try a little and see how it goes. [ more ]
See all 2 replies...
J-Pouch ForumsMen's Health
Small bowel blockages
CJ Chris Jones
Jan Dollar Some people get relief with deep tissue massage to break up adhesions. But, it scares me to think about tearing those adhesions, since they are usually stronger than our intestines. Other than that, dietary restrictions to avoid too much roughage can be an option. Some even live on a liquid diet, but that seems extreme to me. There is no magic solution, like avoiding a single food or a couple of things. Jan [ more ]
Chris Jones Thank you Jan, I definitely do not want more surgery, but I also want my life style back. any suggestions [ more ]
Jan Dollar Adhesions do not go away with time. Like any other scar, they are there for good. The only "cure" is surgical release, but more surgery can cause new adhesions to form. Unfortunately, some of us form more adhesions than others, and that pattern stays with you as a genetic predisposition. Jan [ more ]
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J-Pouch ForumsMen's Health
sexual interest decreased since ileostomy takedown
K KeepFighting(Manny)
lablover It helped my hubby tremendously by lifting weights. [ more ]
abillusmc I have been advised that no medication I take has any negative consequences but I have been inactive for so long as result of UC and surgeries that first attempts have failed. Which is best for jpouch vigra,Levitra what methods help [ more ]
J.Poucher It's been about 8 months since my takedown and I'm still have some sexual dysfunction issues. A few months ago my doctor ran a testosterone level test and found my testosterone levels were a bit low. I've been trying to lift weights regularly to get my T-levels back up. My doctor also said to make sure to get enough rest. My advice is to take it slow. Going down on your partner first might get you revved up after a while. Just take it slow. In the end you might become a better lover because... [ more ]
See all 6 replies...
J-Pouch ForumsMen's Health
Looking for insight on j-pouch
K K2niz
Annettedk I hope for you that you will have the same experience as I have had! It has been better every year. Now after 7 years with my j-pouch I really do not think much about it any more. My life is close to normal. I believe it is primarily due to my bodys own ajustment, and of course also some ajustments of my diet ... but it has been a proces from bad to better and now mostly without any huge problems. There is a lot of good advices and tips to try out along the proces and again different things... [ more ]
jfrederiksen Kyle, Everything feels different at first. I had my surgery Dec 7th, 1986 so I don't recall how long it took but at some point everything begins to feel natural and you won't remember the way it was prior to the surgery. I found that holding the BM as long as I could once per day (which I continue to do today) gave me strength and confidence that I had time to get to a restroom. Good luck and blessings. [ more ]
Cdub Hi Kyle. Congrats on your j-pouch, I hope it works out well for you. It's really early days yet, so yes it's completely normal for it still to feel sensitive and unsatisfying. I'm sure you'll feel better and more comfortable every day, but everyone's body is different. Some things you'll be able to do straight away, other things will take longer to adapt to. Either way, good luck, know you're not alone, and remember: there are no stupid questions, so never feel shy on the forum! [ more ]
See all 4 replies...
J-Pouch ForumsMen's Health
need some advice
N Nickhuss
arvenderpan well as you are saying you had some fainting problem while driving.. so I just want to know that how many time you have spend in driving and what work do you do and I also want to verify what food you have in your general food..? [ more ]
Nickhuss thank you so much for the reply. I think you nailed the problem. It must have been the antibiotic. I don’t do well with meds to begin thank you so much for the reply. I think you nailed the problem. It must have been the antibiotic. I don’t do well with meds to begin with - I also took Prednisone with it which I stopped after taking for two days because of strange reactions. I forgot the name of the antibiotic but it was 500mg. Today I really feel good - I took vitality multi vitamins... [ more ]
JillM What antibiotics did you get? Flatly causes the numbness you describe for me. I'd check if the med has that side effect. I had fainting and light headed issues early in my GI history and we never really solved it. But if you have bronchitis, you should probably rest a bit - skip the work out for a few days - maybe opt for a walk instead. There are some really strong viruses out there this year. [ more ]
See all 3 replies...
J-Pouch ForumsMen's Health
Painful ejaculation
EricEric
ElmerFudd I would say you may just need time for things to heal up. If the pain persists you may need to see a urologist to see if they can provide any insight and help. [ more ]
KDelphi I am female, but, I can tell you that female orgasm is very painful, often caused by dorsal root nerve injury (men have the same nerve root) It runs right over the clitoris in women...not sure about men..sorry I dont know more... [ more ]
Subsky sounds prostate related. the prostate is what makes the white liquidy stuff, and it's located right under the bladder, and considering you had your jpouch removed and butt sealed shut, that area is probably quite inflamed and whatnot. might be something to talk to your doctor about. [ more ]
See all 3 replies...
J-Pouch ForumsMen's Health
The Ideal Diet?
Uncle PocketsUncle Pockets
vanessavy I do my best on a Paleo diet. No carbs like bread, no sugar and no dairy and little fruit since fruit is also sugar in the body (only some goat milk/cheese if crave it). My GI put me on a similar diet called low FODMAP. [ more ]
skn69 Hi Uncle pockets, Question: What is your output like now and do you want it to change or stay the same? That is the big question. Next, what do you like or not to eat and how do you react to things like raw or cooked veggies and fruits? I am kind of math oriented so I like things that add up... Carb meal + Carb meal= thicker output and weight gain Protien meal + Protien meal = thinner output and weight loss Green veggies (well chewed) should be fine but it they give you the runs, cut the... [ more ]
See all 2 replies...
J-Pouch ForumsMen's Health
Fish oil - Prostate Cancer
D Dog
Steve Reid http://www.ncbi.nlm.nih.gov/pubmed/21762028 [ more ]
Steve Reid Not to denounce your (assumed to be well meaning) intentions, but as a person always concerned about accurate and unbiased reporting, suspicious of any "news" being reported, I feel there needs to be some more info available for a person to attain perspective, especially when the statement in question defies logic. As a person who's made a life of being totally aware of what I put in my body, I can't put any faith in an article telling me not to eat omega 3's. Having said that, the best... [ more ]
See all 2 replies...

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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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