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J-Pouch ForumsGeneral Discussion
Kidney stone
B Bubba1028
CTBarrister Stay hydrated! Hopefully this episode sent you the memo. Good luck- [ more ]
Scott F They gave you correct information. Kidney stones form when the stuff they are made of gets too concentrated in the urine. This happens when we’re not hydrated well enough. You’ll be able to take better care of your newborn if you stay well hydrated. However crappy you feel right now, getting dehydrated will make it worse. I hope you feel better very soon! [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch removal - I've done it !!!!
SaffSaff
Saff Hi Mike, oh am glad to provide some comfort for you then! There are actually quite a few people here that have had it removed- it’s just not so obvious to find as we don’t have a separate topic for removal - it would be easier if we did. But if you use the search bar at the top of the page and search ‘pouch removal’ you will find plenty of other people experiences also. [ more ]
Mdz122 Saff, thank you for sharing. I actually logged on today to the site for the first time in a while hoping I could find a post regarding pouch removal. For some reason I didn't think I would and have been feeling like I'm the only in the pouch world considering having it removed. I feel much better now though knowing it does happen to others where a point is reached that removal is necessary. I had my original surgery four years ago and have had nothing but constant flares. Last hope has been... [ more ]
Mysticobra I was in the hospital 11days after. Only because my surgeon wanted to keep an eye on me. Lol. Not because I had problems. She knew me well from prior surgeries. I don't follow instructions well. Hahaha. After 11 days they let me go. I was fine by then. Now that your out its just time and patience. It got better everyday after I got out. Not like previous surgeries I got worse. Having the removal and ileo was a breeze compared to the previous 3 surgeries. That's when I knew I did the right... [ more ]
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J-Pouch ForumsGeneral Discussion
Dr Shens view on medical marijuana ?
PouchomarxPouchomarx
Pouchomarx and they would be? cant get narcotics for needed pain so what is your alternative suggestion? [ more ]
Pouchomarx thanks but my question was specifically about Dr Shens thoughts on the use of it for pouches or in general. I know who, how, and where to obtain it.. [ more ]
Lesandiego While marijuana is legal for recreational use in CA, I work for an employer who receives Federal government funding. I have never done a drug test for this employer. But, the Feds do not recognize marijuana as legal (regardless of what state you live in). I used to get high from the age 14-17 out peer pressure, but like JAYMC, it made me paranoid, so I quit and have never smoked it again. Both of my husbands were pot-heads and it just made them slow and stupid (but, really no different than... [ more ]
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J-Pouch ForumsGeneral Discussion
Another Small Bowel Obstruction
temotytemoty
jan15 The low fodmap diet eliminated bloating, which in turn – – I think – – allowed better transit and digestion. i’m not really certain what the process was with the diet. But it did work. It’s not an easy diet to adhere to and for that matter to even get onto in the beginning. There is quite a bit of information on this website and also links to a university in Australia. Their app is indispensable. It wasn’t until adhesions were remove, during the K pouch surgery, that I no longer had... [ more ]
Melfie Hi JLH, can i please ask what dietry requirements/restrictions seem to help you? [ more ]
Tanner Take VSL3 it does help. Has helped me for 10 years or more. Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Big Joint Pain 9 Years Post Op
T taysharpe
Maxima66 I've had my pouch about 14 years and I have arthritis that used to give me terrible pain. Rheumatology Dr put it down to post colitis/bowel related issues as a strong factor. Had radioactive injection for my knee and I get steroid injections in my wrist. Sometimes it's lack of vitamins that causes the joint pain (coupled with stress) Good luck! [ more ]
Annikki I was diagnosed with Enteropathic Arthritis in Spring 2017. I had an acute flare with major swelling in my left knee. I am on Sulfasalazine which keeps the major swelling events in check but I do have chronic pain in multiple limb joints and SI joints that comes and goes. [ more ]
drone3 Hi Taylor, I have pretty bad inflammatory arthritis. Auto Immune conditions often work in families Colitis/Arthritis/Psoriasis. I had my pouch for 24 yrs before I had any joint pain but once it started out just progressively got worse over the years. It effects my right Sacro Iliac joint, right hip and left knee. I highly recommend you go see a rheumatologist, I regret not seeing one earlier. Im now on Humira and Methotrexate to manage the inflammation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
JPouch Removal
M M
MedicKern M, many of us have been there. Are you taking prednisone? That can cause sweating. Lots of sweating… Antibiotics can be finicky things. Try to get seen as soon as possible to be sure you are on an appropriate antibiotic. I needed about nine months before my pouch “Woke up” as my surgeon called it and I could have something that resembled a normal life. About six months in, I was seriously thinking about going back to an ostomy. Glad now that I waited. There are a lot of factors that can be... [ more ]
Mysticobra I private messaged you. Lmk. Richard [ more ]
M Thanks for the reply Scott. I just don’t want to keep a pouch at all. I feel like I had a life with a bag which is now gone and 10 weeks later I’m still housebound with no chance of it changing soon. I started ciprofloxacin which isn’t helping much (had some spare from a UTI). I feel like I’ve made the wrong decision and now I’m going to be “stuck” feeling this way with no life with this pouch now. My worry is that there are more problems than pouchitis and I don’t want to start getting... [ more ]
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J-Pouch ForumsGeneral Discussion
Colonic Inertia
S shoflo
shoflo Thanks Bill I will be following up with him when he receives the results from manometry. I will also read up on the 2 you mentioned [ more ]
BillV You should ask your surgeon if he thinks that exercises (like Kegel exercises) could possibly strengthen your sphincter muscles sufficiently to support a J pouch. If not and an ileostomy is recommended, you may want to consider two options that do not require having an external bag: the K pouch and the BCIR. [ more ]
shoflo Thanks so so much [ more ]
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J-Pouch ForumsGeneral Discussion
Inflammation, and a stupid health care system
F Fredrik
Jaymc Hi Fredrik, I sympathize. Have you attempted the FODMAP (Monash univ. in Australia) diet? Its not in an of itself a cure - butt (aha) it does provide the first applicable helpful food info I've seen since acquiring UC at 10 year old. I'm 54 now with no colon having had UC then getting cancer. I tried every most diet, drugs, regimes..its the autoimmune disorder we stuck with having to treat symptoms to manage daily life. I struggle with this as well, I really don't know how to get through... [ more ]
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J-Pouch ForumsPouchitis
Alicaforsen
D DZAtl
TMNoe Hi ! I was wondering if anyone had any updated information on Alicaforcen - those in the trials - are you still on it? would love to hear any recent news/info. [ more ]
Karenchase It sounds like they want to try and rush it to market, as someone said earlier in this thread. I believe I was one of the last people (in Canada anyway) to be admitted to the study, so it seems like the clinical trial period is winding down. I don't know how long it typically takes for a product to come to market once it has cleared the trial phase, but I would suspect it will still be many months, possibly a couple of years, before it is widely available. I am supposed to be in the... [ more ]
katenet I'm sure I sound like an annoying patient BUT dors anyone know when this drug will be available to everyone??? [ more ]
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J-Pouch ForumsGeneral Discussion
Need Advice
N Nick10136
Nick10136 Thank you! At least I know what to expect, and I guess this is a good thing for those close to me at meetings and events. Nick [ more ]
Scott F Nick, many of us have abandoned passing gas except when on the toilet. The risk of a shart can be too high. [ more ]
Nick10136 Thanks all for your replies. I am over two months out on my takedown and I am feeling much better. However passing gas is still problematic, can't do it standing up or sitting, only lying on my side will gas pass through. Additionally, there are times when small amounts of stool will pass with the gas. I am hoping these two problems will resolve themselves in the future. And again thanks to all for listening. Nick [ more ]
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J-Pouch ForumsGeneral Discussion
Quick burn question
I Indy_Dave
Jaypea Oh yes. Any citrus fruit will do that for me. Also blueberries are amongst the culprits. [ more ]
Scott F Dave, you could just turn it into an experiment. Try a couple of days with the juice, and a couple of days without it. That would be much more reliable information. [ more ]
Raj I can do orange juice and oranges but no fruits with skin. Grapes give me instant diaroehha so I just stay away from them. [ more ]
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J-Pouch ForumsGeneral Discussion
NYU Langone
L liz11
JanW2 Liz , Are you in CLE area? I too have long history there(CCF) and went to NYU for surgery. Things have changed and I’m agreeing with the others, that it’s just not the same feel you got in the past . Saddened to say, way to busy there. Broke my heart really 😢 after all 19 years. [ more ]
Jeffsmom To Momma. If you find a pain management team you are lucky! The suggestions that the PA gave use were useless. Not that they didnt try but there is no such thing as pain management anywhere unless it is headache or back pain. My husband and searched for two weeks before we could find one to even speak to us about our son’s pain problems. The tram in NY will not take you once you are doscharged. Their so called out patient pain cljnic will mot take you either. They dont manage surgical pain. [ more ]
Momma As well, I didn't mean this mean this to be a critique. Just sharing my experience with communication and follow up care with him and his team at NYU. He is of course a great surgeon, but again too busy. I thought that was important to share. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Non-Pouchitis Flare. Help!
C Chevygirl88
tulsamom I have recently found that Matzah helps clear up extremely loose stools. The mix of smashed up banana and peanut butter spread on it brings me back to normal within a day. I figured it out when I read that people often get constipated from eating so much Matzah during Passover. But you can get it year round in most grocery stores. [ more ]
Chevygirl88 Thank you guys! I’ve laid in bed for a few days and drank smoothies and tried to eat healthy foods in case it’s a flare. Maybe it was just a virus. I don’t know. I feel like sometimes it’s so hard to tell. I’m going to take your advice and hope it helps. Thanks again! [ more ]
Raj I've been working ever since takedown 6x a week without issues. I stay cautious of the hydration part as sometimes its easy to get dehydrated without even knowing, so I carry a big bottle of plain water or add some creatine and BCAA to fuel the workout. I think its something you ate thats caused some reaction . Maybe food poisoning ? I'd get checked for that. Also anytime I feel diarroeha like or not well overall I switch to a plain diet full of bananas, brown bread with butter, nut butters... [ more ]
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J-Pouch ForumsGeneral Discussion
Has anyone one else run across skin problems after removal of their colon?
MysticobraMysticobra
Dog Visited another derm who said this is "nummular eczema" and is common out here in Colorado. . .and probably any place that is dry. [ more ]
Tanner Last 6 months lots of rash. Had colon gone 34 years ago. And now skin problems is weird! [ more ]
Dog I was given the devil's tic tac (prednisone) and that has stopped the itching, spread, and possibly a little healing. Next stop is a third dermatologist and a rheumotologist. I can't spell or say that word. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pooping out of not connected j-pouch
A Andreita
Andreita I thank you just wanted to make sure [ more ]
Raj Yeah, its totally normal. The jpouch isn't fully disconnected so some of the stool specially liquids tend to pass through, and I know its very frustating. I use to pass the blood and stool of the first week of creation of the pouch and then white mucus for another month. What I found was the more I passed the mucus the more it was built next time and the cycle didn't stop. So one day I held back and it shrunk to almost none. Also do a lot of kegels, I mean literally do butt exercises... [ more ]
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J-Pouch ForumsGeneral Discussion
Should I tell him??
Mema 1Mema 1
Aimc Mema, I think you have told him enough for now. The other stuff, if he's the one will come. Good luck, relax and have fun. Aimee [ more ]
skn69 Mema, I was single and dating for 20yrs with a K pouch...Abdominal stoma. I dated, told some and not others, I kept it to myself for a long time and hid things behind sexy lingerie and band-aides...after a while, you just get tired of hiding. I ended up telling the ones who had a chance to stick around...But please understand that in the long-run, if they care more about that then they do about you then they are not for you... But you have to get them to stick around first! So keep silent on... [ more ]
Mema 1 I use those too!!! [ more ]
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J-Pouch ForumsGeneral Discussion
How Long Between Your Surgery's?
C COFFEEFORTHEWIN
CeeeeCeeee I had a two step and chose to wait a full year between Step 1 and Step 2 even though my surgeon said I was ready for the takedown after three months. I wanted to be sure I was well healed and for the first time in years I felt really healthy! I had trouble giving up my ileostomy because it was a Godsend! Even when I was on the table ready to be put under, I was weeping! My surgeon told me I could change my mind. I chose to go ahead. It's been a little over15 years since my takedown and I... [ more ]
MedicKern Coffee, everyone’s situation is unique. I recently heard a surgeon explain to a patient that the body needs a minimum of six weeks to heal anything serious. Break a bone: 6 week of healing. Gall bladder removal: 6 weeks of healing. That is if things go well and you are starting from a healthy baseline. You are post colectomy, yes? How is your ostomy working? We got my end ostomy dialed in pretty quickly after my colectomy. Things weren’t perfect, but it was much better than when I was in a... [ more ]
Dog For me, between total colectomy and JPouch was about 3 months and the take down 5 months after that. My first flare required a total colectomy to save my life, I lost 50 pounds in 1 month! [ more ]
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J-Pouch ForumsGeneral Discussion
Best g.i. docs in California or NY
S scallop
CeeeeCeeee Where in California do you live? I have an excellent gastroenterologist in Newport Beach. Let me know if you would like his name, etc. Best Wishes! [ more ]
scallop looking for g.i. doc not surgeon. Should have made that clear. [ more ]
Scott F I’d suggest always being clear about the differences between colo-rectal surgeons vs. gastroenterologists. While it’s true that plenty of colo-rectal surgeons provide fairly complete post-J-pouch surgery care for their own J-pouch patients, very few of them would take that role on for a different surgeon’s patients. [ more ]
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J-Pouch ForumsGeneral Discussion
B12 injection self administer
Paul HPaul H
Dog Slightly tangent to the topic at hand. . .my B12 is at the very low end of normal (208). I've been taking a B12 pill (1000 mcg) every day for a month to see if my issue is not getting enough B12 or with absorption. How long is long enough to see if those pills are working? 1 month? 3 months? 6 months? [ more ]
1993SPouch I'm late to this discussion, but have been giving myself injections for 20 years. It's easy, convenient and doesn't hurt. I'm so used to it, I can do it while talking on the phone - haha. I can up the frequency if I'm feeling tired. This week I'm doing 1cc per day for seven days because I got into a rut and didn't give myself any for a few months (my bad). After this week I'll do 1cc every two days, then 1cc every three days, then once per week after that. After the first six days of this... [ more ]
Paul H Thanks very much. My IBD clinic tell me it must be by injection. I bought some syringes today from the farmacia who were very helpful in making sure they were the correct sizes. My friend is an experienced nurse who has jabbed me before & I intend to get some advice & practice with her this week. As an ex IV drug user from the 1980s I have some experience but not of IM so pretty sure I can cope. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pill Cam stuck
LU LisaTX USA
GrannyJ64 Several years ago I did one of the capsule studies. I kept telling surgeon that i never passed it. He said I must have just not noticed it. Well several months later I ended up having to have another of many scar adhesion surgeries and this one also involved a resection. The first thing the doctor told me after surgery was "oh and by the way that pill was still in there" lol So I have never done another one of those camera studies! [ more ]
CeeeeCeeee Not the same situation but the solution for my situation may help you. Years ago I had a small bowel obstruction due to my small intestine twisting on itself. My colorectal surgeon admitted me to the hospital and each time he visited he placed his hands on my abdomen and gave me an extremely painful massage for several minutes each time. In about three days my small intestine had untwisted itself and my obstruction was resolved. So.....it might be worth it to firmly massage the area where... [ more ]
LisaTX USA No luck with the prep last night. CT scan ordered for next week to locate it and see if it can be retrieved with a scope. Wondering if anyone had success with diet to encourage it to move out?...!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Time Spent In Bathroom / Difficulty Emptying Pouch
DLightDLight
Former Member You may be suffering from Fissures within the Anal Canal. A day or so after my takedown surgery I experienced a similar sensation as yourself, kinda feeling like I needed to go but nothing happening and once I finished, I'd have to dash back and start over; at the time I didn't know what expect but I had the sensation of needing to pass something more than what was coming out, which was never ending. I managed to apply ilex paste just within the Anal Sphincter which provided instant relief... [ more ]
loralie78 Diet is so extremely important for a pouch to function at its best. I have had my pouch for 5 years now and through alot of trial and error I have it working well 95% of the time. I find for myself that the more vegetables i eat the better. I eat alot of soft steamed broccoli, cauliflower, and brussel sprouts. I ususlly have 2-3 salads a week. I make green smoothies with baby spinach, ginger, cucumber, plain greek yogurt, peaches with a touch of honey and water. The smoothies get everything... [ more ]
Ikh I was being quite constipated on the last november, it became really painful and , and disappointing, I solved it adding cooked vegetables (turnip greens which we have many here in Italy) one evening I flushed much more stools and then in the next days I still ate cooked vegetables, lots of yoghurts, some salads, and I solved the problem (still had pouchitis). I advise you, also, to try psyllium fiber . The cooked vegetables are to be cooked in olive oil or butter and you can add garlic,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Green stool
E Enterin
Enterin It looks like a cold and similar, closely related to gastroenterological problems, and it's hard to know what it is. I got cipro for throat infection this time, but he did not stop diarrhea. [ more ]
Raj I had the cough for almost entire winters. So persistent it never went away though I did a very course of anti biotics but it stayed. So I just cut off all foods that would aggrevate it. As for bananas it does have fairly high electrolytes but it seem to aggrevate my cold even further so I eat them only during daytime. [ more ]
Enterin So more people have noticed that colds cause problems in the gastroenterolic tract. Interestingly, I figured it was so. This time it takes longer but the cold was stronger. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch problems for 20 years
RubyDawn44RubyDawn44
Mariiuccia Hi Ruby have you tried tap water enema? I’ve been using this up to 4xs a day and helps me with elimination if jpouch! Been dealing with constipation for past year! Saw GI recently after an MRI of pelvic area says there is scar tissue and wants me to see surgeon as may need to go back to ikeostony! Not too pleased now waiting to see colorectal surgeon! In meantime been reading that some people with same issues talk about dilation! I’m trying to read up on it further! All this may explain my... [ more ]
Raj I dont know if it'll work or not but when I get constipated by an overdose of imodium that is barely a tablet a day, I feel pain in my entire gut. I take once tsp of pysllium husk powder with lukewarm milk it works as a wonderful laxative . In constipation when taken with milk it helps move things out and in diarrhea when taken with yoghurt it binds up stool. You may want to give it a shot if you're not lactose intolerant. [ more ]
RubyDawn44 Thank you so much, ok appreciate all the advice Scott. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch Surgery Re-do?
A alaskanwombat
Jkpgl My wife had her 1st J-pouch for ~2.5 years and basically her rectal cuff still had UC and was a chronic problem, things never seemed to function correctly for her and nothing would seem to calm it down. She was diverted 1.5 years ago and eventually had a “pouch advancement surgery” with a mucosectomy last July. There were major complications when creating her new jpouch as her SM artery wasn’t long enough to connect her pouch (a separate topic) but with another surgery in between she... [ more ]
alaskanwombat Thank you so much for your responses! This has given some hope. I'm waiting on the pathology results from the polyp and then guess I'll go from there. [ more ]
Scott F Alaskanwombat, you need to talk to a different surgeon. It is still common to leave in the rectal cuff during surgery, because it’s easier to perform and has a lower risk of incontinence. If the cuff becomes problematic, though, as yours has, the cuff can be removed in what is called “pouch advancement surgery.” This is usually done with a mucosectomy. There is some risk of incontinence, and the hand-sewn procedure is technically difficult, so I would choose a very experienced surgeon if at... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch removal surgery
RN Roberto Nocolon
RinaJP Hi Roberto. I just had the j-pouch recently removed. It went smoothly and iniy took the surgeon 4-5 hours to remove. However, I did have a temp ileostomy prior, so the surgeon also had to change the ileo to an end ileo. I’m not sure how much more complicated the surgery if you are going to have the j-pouch removal and ileo creation all in one surgery. Hope the surgery goes well should yoh choose to do the surgery. -Rina [ more ]
Momma None that’s all. This is a 2nd pouch for my son that failed. So just the pouch out and bottom closed [ more ]
BillV I had my J pouch removed, bottom sewn shut and a BCIR constructed in the same surgery. The total time for surgery was about 6 hours. This time included about 2 hours for removal of dense adhesions from prior surgeries. I do not think there is a “standard” time for these operations since it is often unknown what the surgeon will find once he gets inside. What procedures other than J pouch and anus removal are you having? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy
JaniepJaniep
Janiep Yup [ more ]
CTBarrister So basically you found out you are just like the rest of us😉 [ more ]
Janiep Thank you everyone! Had my Pouchoscopy and all is good! No cancer ... just a sore tush ... now but I knew that would happen with the high liquid frequency plus the Magnesium Citrate. But I am just happy that my GI doc said there is a slight inflammation due to my chronic Pouchitis. Not as bad as we thought it would be. So thank you for calming me down guys!!! LIFE IS GOOD💃💃💃 Janie [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch check ups (UK)?
A Albannach
Albannach Thanks for the replies. My surgery was because of fulminant pancolitis. I didn't have any pre-cancerous issues, but after the surgery the surgeon did mention the biennial appointment to check that the rectal cuff/anastomosis was looking ok. Albannach [ more ]
Scott F There are significant cultural and economic differences in this. Although it is possible to develop cancer in the rectal cuff, it’s uncommon. In the US this translates to regular pouchoscopy, perhaps annually, in many doctors’ practices. In other places the modest cancer risk is treated as less of an issue. Part of this is economic, since performing scopes is quite profitable in the US. If dysplasia was found prior to colectomy then the guidance is generally different, and annual scopes are... [ more ]
Bobish I'm in UK and exactly the same position as you albannach. Had my op 2.5 years ago and not been scoped or checked at all... Like you I don't think I have any issues so they don't seem that bothered. I had chats with the nurses just to monitor progress, and I've asked about scopes and they just say they will get me in for a scope at some point but it's not really required, and tell me it will be prioritised if I have issues. Was your surgery elective? If you have signs of Cancer previously... [ more ]
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J-Pouch ForumsGeneral Discussion
Brother just dx'd with Crohn's
SpookySpooky
Momma In my husband's family... his father- UC himself- UC, high-grade dysplasia, very successful jpouch for 15 yrs his son- UC, 2 failed jpouches, waiting on surgery to remove his sister- UC, died of colon cancer at 28 his niece- UC, permanent ostomy his cousin- crohns his cousin's son- crohns his 2 uncles- UC Drs said there was only 8% chance of passing this on. Proved them wrong. [ more ]
skn69 2 of my dad's first cousins had FAP and goodness knows how many others had IBD. Almost all of the women on my dad's and my mom's side had hypothyroidism. Mom was on Thyrox since goodness knows when (I was a teenager and she even gave me some to see 'how it would affect me') and all of my dad's nieces have it...right now my thyroid is the size of a baseball. But apparently, in my case, it is seasonal (???!)...it looks this way every winter and then goes back to normal in the summer...doc says... [ more ]
Lesandiego Like you, one 2nd cousin has a J-pouch and paternal grandfather had colon cancer. [ more ]
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J-Pouch ForumsGeneral Discussion
Elective surgery??
K Kh1988
Kh1988 Thanks for the info! I will do as much research as possible on surgeons and choose wisely [ more ]
Kh1988 Very good info! Thank you 🙏🏻 I will definitely be careful with who I choose [ more ]
CTBarrister Totally and 100% agree. My J Pouch was done in 1992 by Irwin Gelernt who at that time was considered the best J pouch surgeon in the USA and even though the surgery started being done late 1980s on a mass scale, he had done thousands by 1992. He did the first K Pouch surgery in the USA and was mentored by Dr Nils Kock who that surgery is named for. Dr Gelernt is unfortunately no longer with us, but the group of surgeons he mentored is, and they are doing business as Manhattan Surgical... [ more ]
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J-Pouch ForumsGeneral Discussion
Lot of trips to the bathroom!
C Crazyred
CTBarrister Levsin is the better of the 2 between It and bentyl. Less side effects but could make you feel loopy. It’s best taken 45 minutes before meals if you are having bursts of frequent BMs right after meals. If the BMs all come in bursts after eating it’s a spasmodic Pouch. If spaced through the day it’s probably Pouchitis. Generic of levsin is called Hyoscamine. Donnatal is another anti-spasmodic drug which is milder than levsin and bentyl but I am not sure if it’s still being used or covered by... [ more ]
Scott F The anti-spasmodics most often used are Bentyl and Levsin. They do have some side effects that can be unpleasant. But a spasmodic pouch is only one possible cause for frequency. Pouchitis is a more common cause, I think. [ more ]
maddie18 ❤️
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J-Pouch ForumsGeneral Discussion
VSL
C CathyA
CathyA Thank you Scott [ more ]
Scott F Sam’s Club seems to be able to still get it, and it can be ordered from the manufacturer. Most of the wholesalers have stopped carrying it, and Canada has shut it down completely. Apparently in 2016 they had a disagreement with the guy who actually owned and understood the formula, so the product currently labeled VSL #3 is an imperfect copy of the original, well-studied formula. It seems to still work for me, and that’s the product my insurance company covers, so I’m sticking with it as... [ more ]
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J-Pouch ForumsK-Pouch Korner
k pouchers: do you wear a Medic Alert bracelet and what does it cite?
J JLH
Arlene B66 I wear a medical alert ankle bracelet which says continent illeostomy contact & name & number if my surgeon plus med alert #. [ more ]
WillLive4ever Yep, that is the main function for the Medic Alert> as in being unconscious and taken in to the ER or worked on in the field. I have not had a new one but now I have a reliable surgeon that is not only proactive but knows how and what to say. But we are living in this different world it seems and even being conscious I have had ER doctors ignore my plead to consult him in a crisis. Now today I just hope they would look at my Medic Alert Bracelet or necklace. I am planning on getting one... [ more ]
LadyTay97 When I went to the ER I was conscious and admittedly they didn't look at my medic alert either. Hopefully if someone is unconscious they would look for and at it. It bewilders the mind that the ER staff would not take your written information. The nurse did take my written information I had but wouldn't keep it until I told him to keep it. Then he did until he finished inputted all the information. But he did take it. And when he gave the paper back, I gave it to the doctor who used the... [ more ]
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J-Pouch ForumsK-Pouch Korner
K Pouch rotation for failed nipple valve
lagoonabeachlagoonabeach
skn69 P.S. Yes, the BCIR guys do use a Binky to keep the stoma from closing up. They work up to a bigger size over a period of time if needed. It has helped a lot of people and is worth the try (anything is worth the try to avoid surgery). Why is your stoma closing up? Is it just shrinking or is it granulation closing it off? Sharon [ more ]
skn69 I had my pouch flipped over by Dr Cohen at Mt Sinai in 2008 after a couple of previous revisions and a failed revision here in France in 2000 where my stoma 'sunk in' about 2 inches into my abdomen. It twisted like a corkscrew and made intubation a nightmare. It took me 5 yrs to go back to Canada and have it fix by Dr C...So I did a lot of damage to the valve. Dr C first tried to change the stoma site and bring it back up to the surface (that worked great for 2 yrs) then I started having... [ more ]
lagoonabeach ❤️
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J-Pouch ForumsWomen's Health & Pregnancy
Irregular period
C CandiceT
skn69 I do not know if our conditions and irregular periods are related to each other (pelvic swelling, surgery...etc, can put pay to what other people call normal) but I do know that a lot of us suffer from them. My best friend could set her clock by her periods, I never could. They were always sort of a surprise to me...2 weeks apart, 2 months apart...I never knew. In my 30's I had cysts...so that was the surgeon's explanation for the irregularities. When they removed the cysts and cleared out... [ more ]
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J-Pouch ForumsGeneral Discussion
Prostatectomy surgeons
CO Convey of Quail
TE Marie I don't have a specific surgeon suggestion for you but I know part of what you are facing. My husband was diagnosed with prostate cancer and he had the option of surgery or radiation treatment. After hearing how radiation had the potential to harm his rectum he elected surgery. He'd witnessed enough with me to know he didn't want to risk rectum damage. I had great doctors at the Mayo Clinic in Rochester where I unfortunately had to have my j-pouch removed. I have no idea where you live but... [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Cramping-obstruction
A angilanr
Arlene B66 I have had pouchitis in the past, have had puch since 1979. This is different - I think that from taking aleeve for bursitis for weeks I became constipated - so I am pushing fluids & it seems to be moving along.... [ more ]
Kim S Just curious, where was your surgery done? I’ve never had pouchitis, but it certainly sounds like this could possibly be pouchitis. You might ask your doctor about taking Gas-X or something similar. It might help. [ more ]
Arlene B66 Am experience terrible cramping. Stool still moving but feel like adhesions are causing issue. Heating pad helps - any other ideas? [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
stupid fiber question
TeacherladyTeacherlady
Scott F I find I do better with psyllium than without, but I only know that because I tried it both ways. I’d suggest trying different things to see what works for you. If there are complications you’re worried about then it’s worth taking precautions rather than avoiding the experiment. For example, if you’re worried about a nighttime accident or seepage then try a soft towel on the bed, or absorbent underwear, until you gain confidence. [ more ]
Bobish For me at least, gas and consistency tend to cause me to visit the bathroom rather than volume. So a bit of bulking probally won't hurt, but of course you need to do your own trials. I'm constantly finding new things and finding previous assumptions maybe weren't as true as I thought. For example I was on Beanoas a digestive enzyme, and now I don't really think it makes a difference which is weird... Maybe when I started using it I needed it and now don't..... I plan to leaves off it, the... [ more ]
Raj Metamucil has the tendency to absorb all the extra fluid and expand. I take 1 tsp in morning and 1 before dinner and soon will reduce it to 1/2tsp . I asked the surgeon if it has tendency to increase the urge, his response was mixed. He said the role of pysillium husk is to bulk up the stool and its easy to hold back bulked up stool rather than liquid, but it has the tendency to increase the urge for the first few months of its usage. The amount I take largely depends on how consistent is my... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Severe constipation
S shoflo
shoflo Thank you guys soooo much as I want to pray and believe it’s going to be a simple fix my gut tells me it’s not. I will keep you guys posted. [ more ]
Aimc Shoflo, my pouch was also full, as was the intestine above it. I was in the hospital when mine was found. I had gone to the ER for a possible blockage. They admitted me and were going to do surgery to unblock me. My surgeon decided he didn't want to do emergency surgery on me, because he said I could lose my pouch. So came the collaboration between the surgeon and GI doc. only what to do with me. It was a lot of hurry up and wait. An Ng tube for five days, and lots of enemas and x-rays. [ more ]
Scott F Shoflo, your prep is exactly right. The enemas will do most of the work. Your doctor will rinse out any residual stool using the scope (it may take a fair amount of rinsing). Good luck! [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Sibo pain?
M Momma
lablover My hubby has that. His gastro guy recommended a doctor from Penn State who specializes in Sibo. [ more ]
Scott F SIBO essentially causes gas overproduction and pain results. If your son’s pain doesn’t move at all then I’d start asking questions about SIBO as the diagnosis. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Anal Pain-Itching
M MichaelLM
Former Member https://www.ilexhealthproducts.com/usd/ [ more ]
Leah T Formula for success for itchy painful bums! I'm three years in with my jpouch and after trying everything that was recommended by GI nurse, dermatologist and online, I’ve zeroed in on a magic formula for keeping my overused itchy painful bum in good, heathy condition. 1) Diltiazem/Lidocaine 3/3% cream - This is a compound made in house at a pharmacy or more likely an Apathecary. Hoey Apathecary in Madison, Wi created this recipe for me (and I’m sure they would make it for you). Diltiazam is... [ more ]
MichaelLM Dr. Fazio at Cleveland Clinic performed my surgery. He's pretty much credited with the procedure. There's a bust of him (he's now dead) in the Gastro Department at the Clinic's Cleveland campus. [ more ]
See all 8 replies...

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