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J-Pouch ForumsGeneral Discussion
Looks like I will have surgery - advice
C cbjonice
Disneynut Make sure you warn your daughter how you will look. My daughter was 12 when I had my surgeries and she burst into tears when she saw me. I looked so bad and had oxygen hooked up and a bunch of drains. Where will you be having your surgery? I wish you good luck and I hope you have as good of results as I have had. [ more ]
Jeff P. I too have a seven year old and had two surgeries recently. She is a smart kid, so we were honest with her and to,d her I was having surgery. We gave her general details - she knew I had a bag. As far as she was concerned, she was excited that Daddy was home from work for 6 weeks for each surgery. You may want to talk with your pediatrician to get advice on how and how much to share. Ours was very helpful. As for your wife, just be sensitive and use air spray. [ more ]
KimR Make sure to use the support you have. This is a tough surgery and you have to give your body time to heal. Financially, my family took a major hit because I carry the health insurance for all of us...I had to have 4 surgeries over 12 months and my employer cancelled my insurance on each of my final 3 medical leaves. I had to do COBRA which is EXPENSIVE! I have 2 girls who were 5 and 1 when I had the surgery. Thankfully my parents live nearby and are amazingly generous people so my mom spent... [ more ]
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J-Pouch ForumsGeneral Discussion
urgency with excercise??
crick05crick05
NewPouchMike Just echoing sentiments of others. I had same problem..... I'd try to exercise and have to rush to find restroom etc..... I'd say it was towards end of my first year post-takedown that I saw the big improvement with this.... It's not a problem for me anymore. I exercise every day several times a day. I either don't get any of the awful urges or just a small manageable number and they aren't awful like they are for you now. They are manageable...... hang in there... it gets way better !! [ more ]
dgloria5 When I exercise like tap dancing, walking, bowling I never have to go but the few minutes after I get home I have to do both.I don't even think about it when I'm out,I'm happy that the pouch acts this way. Also if I'm out for lunch and have a drink it really slows me up. I think for all of us we had lots of ups and downs the first year but not to worry because in time you can hold it till you get home.The pouch really improves a whole lot, but it does take a little time. [ more ]
Jan Dollar I also got a treadmill. That way, I can still exercise, even when I need to stay home. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Sleeping weirdness
K KimR
Torg Glad to see that I am not the only one. I have a hard time sleeping laying down. I sleep better in my Lazy Boy chair. Don't know why. If I am in a motel I have to prop myself up. My 5 year old likes it though it makes it easier for him to sneak into bed with his mom. [ more ]
clz81 I think I'm in the minority of people in the world that sleep flat on their stomach (and I always have). This has helped me TREMENDOUSLY with being able to sleep through the night every night. There is the least amount of pressure on the pouch and "exit hole" (trying to maintain some dignity in these replies) and thus less of an urgency to have to go. If I sleep on my back or my sides, I will most definitely have to get up. I agree with all the others too in that the left side vs. the right... [ more ]
CTBarrister Kim, Bentyl and Donnatal will definitely help, especially if they are taken 30-45 minutes before meals and at bedtime. Of those 2, I found Donnatal has milder side effects in terms of making me feel a little "loopy" or lightheaded. I still take 1 Donnatal at bedtime. [ more ]
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J-Pouch ForumsGeneral Discussion
How does a jpouch urge feel vs a colon urge?
B Badplumbing
mad hatter Pouchitis leaves me feeling like I did with UC that being th urgency is there and you don't feel like you can hold much in there. But when I feel good I empty when I get a chance and or when I go to empty my bladder. I wish it was like this all the time ,but after 3 years Im stilltrying to find that happy medium [ more ]
KiwiPoucher Apart from when I had ileus, I have had absolute contol of my J-pouch. For me it just keeps getting better and better. I can sense when there is something in there but don't have to empty until it suits me. I don't have to empty it at night. Sometimes if I wake up I can feel it is fairly full, but I am so confident now that I just think "oh I can't be bothered to get up out of my warm bed" and just go back to sleep. I also definately go more when I am at home just because it makes sense. [ more ]
CTBarrister I agree with the above post, and can expand a little bit on urgency during bouts with pouchitis since I have had more than a few. Urgency during pouchitis bouts for me is still not as bad as it was with UC, when I had virtual incontinence and had to sprint to the bathroom. I think that is because the urgency with pouchitis occurs as soon as there is fecal matter entering the pouch, and it is of insufficient amount to create much pressure although you do feel urgency. Laws of physics, mass... [ more ]
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J-Pouch ForumsGeneral Discussion
Help with diagnosing my problems
T Traveller
Jan Dollar Buscopan is fine. Other antispasmotics commonly used are dicyclomine (Bentyl) and Hyoscyamine (Levsin). A typical tricylic antidepressant used is amitriptyline (Elavil). I am afraid that IPS is like IBS and you don't cure it, you manage it. Don't know much about it other than Dr. Shen at Cleveland Clinic is researching it in his pouchitis clinic. Jan [ more ]
Subzeromambo Jan, Have you heard much about treatments using Lactose Solution USP 20 mg twice a day for bacterial overgrowth? [ more ]
Traveller Thanks Jan I have been on endep up until a few weeks ago, but it was playing havoc with my system. Have also just started on buscopan last week as the antispasmodic. Do you have any suggestions for which tricyclic antidepressant and antispasmodic to use? What is the prognosis for IPS? Is it something you have to always manage or does treatment and time cure it? [ more ]
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J-Pouch ForumsGeneral Discussion
Advice needed: J Pouch fistula
S SinColon
Jan Dollar Ooh, a fistula is bad news indeed. If you do a search, you'll find lots of threads about it. I am afraid this is going to be a rather long, drawn out affair. Sorry about that. I hope the IV antibiotics help shrink it. Does it connect to another organ, or is it more of a blind end thing? If so, that is usually called a sinus tract. Jan [ more ]
SinColon I had made this thread a while ago. My frequency and consistency had gotten better then took a turn a month or so ago. I had an MRI done and an infection was found due to fistula in my J Pouch. They are going to set up a PICC line & antibiotics but he said the fistulas likely won't heal and it will be an recurring thing. I'd imagine someone here has experienced something similar and I'm curious to know what was done and how you've been since. Thanks. [ more ]
kathy smith Are they also called compounding pharmacies? kathy [ more ]
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J-Pouch ForumsGeneral Discussion
is anyone in Albuquerque, NM?
ajmom1ajmom1
Former Member hello, Dr. William Brown did my J-Pouch surgery and he is great! his number is 243-3514. It usually takes awhile to get in to see him, but his staff is always available. [ more ]
CPryor I do live in Albuquerque, but unfortunately I've only been here for two years and I had my operation 11 years ago. Sorry I can't be of more help, but feel free to contact me if you have any other questions! [ more ]
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J-Pouch ForumsGeneral Discussion
Buying a Bidet... What type?
bootstrapbootstrap
bootstrap As I said on your other post, Brondell is a good brand, but you can get the exact same thing for less than half that groupon price on ebay, brand new. [ more ]
LizTish22 Hey guys! I just posted this but saw this discussion and thought I would add. I too have been considering buying one. Although I really haven't done much research, this groupon caught my eye. Could you guys take a look and tell me if its worth it? THANK GOODNESS FOR THIS SITE http://touch2.groupon.com/deal...=channel_goods-deals [ more ]
bootstrap Hm, looks like the COCO 9500R and the Brondell Swash 1000 are pretty comparable when I do a little research. I like that the Brondell model has a sturdy lid you can sit on. But the COCO remote looks so high-tech! Haha. Oh well, I already ordered the COCO at a fair price straight from the manufacturer, so I guess I'll just go with that. My aunt sent me $$ because she heard what I was going through and wanted to help, and it is enough to cover pretty much whatever bidet I want. Plus, you never... [ more ]
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J-Pouch ForumsGeneral Discussion
Worth it?
L LizTish22
bootstrap Brondell is a good brand. As Connie said, those "list prices" are nowhere near accurate. The prices listed on the groupon are pretty good, but you can get even better ones for the exact same item on ebay. The Swash 1000 is the top Brondell model with all the bells and whistles, and a couple days ago ebay was selling them for around $200. I just ordered the top COCO model for $429 from the manufacturer and still waiting for dilevery, but if I'd seen the ebay thing before, I may have gone for... [ more ]
TinCan It looks to me like a few of the items listed are not bidets. My take is that only the "FreshSpa" and "Swash 1000" are actual bidets. The Swash being a toilet seat replacement type with many more features (such as heated water - a real plus in my opinion). Personally, I bought mine (a coco) from bed, bath, and beyond using one of their 20% off coupons. Ended up paying somewhere around $350. It's a real nice unit similar to the Swash 1000. Can't imagine life without it. [ more ]
Connie On Amazon, these products are nowhere near the "list price" shown in the Groupon ad. But they get mostly good reviews for quality, and the Groupon deal is still a savings. In general, bidet attachments are definitely worth it. [ more ]
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J-Pouch ForumsGeneral Discussion
hydration and drinking question again
B Badplumbing
Former Member ❤️
Jan Dollar I think the main concern about hydration is in the early months while you are getting used to your pouch, and there can be a tendency to think that too much fluids can lead to too many bowel movements. It can be a difficult balancing act, because you need to drink enough to keep your urine dilute, regardless of how many bowel movements you have. As time goes on, your body learns to absorb water better, so you don't need to be drinking more all the time. The main times you'd need to be wary... [ more ]
kathy smith I agree with Subzeromambo - I drink exactly the same amount now as when I was coloned. I have a cappuccino in the morning and maybe a couple of glasses of water with Vitalyte. Not that I need the Vitalyte but the water here tastes horrid even after filtering it. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Advice? Taking 17yr old daughter for GI checkup tomorrow
Mom of a JpoucherMom of a Jpoucher
Jan Dollar Scoping frequency should be on a case by case basis, not a preset schedule. Lots of things to consider. Obviously, if she was having problems, annual or even more frequent scopes would be in order. The main consideration after that is the length of time since her UC diagnosis, after 8-10 years from diagnosis, the cancer risk goes up, so at that time she would need annual or every other year scopes to check the pouch, but mostly that little remnant of rectal cuff. Frequency of 8-12/day is on... [ more ]
ISeeUC I'd mention the 8-12 BMs/day, which sounds a little high 3 years out. Did she have UC or Chron's? If she was on prednisone for more than a month I'd ask about getting a bone density scan (aka a DEXA scan) to make sure her skeleton's in top shape. You might spend a few minutes with her to check whether she's having any other issues with her pouch, GI tract, or surgical sites. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
ready to give up
G Guest
TE Marie FYI, Dr. Oz did 2 exercises, with 3 ladies, for getting the gas out on his TV show Tuesday 11/27/12. I bet it is on the show's website. One was almost exactly what was recommended to me on this site. I'd suggest anyone with gas pains to look the show up as they were demonstrating the exercises. [ more ]
crick05 Hi Chasingtime I had my take down in July and like you the gas is incredible. Who knew that it could cause so much pain. When I was first diagnosed with UC 4 years ago I met a wonderful ER nurse who told me about a book called Breaking the Vicious cycle by Elaine Gottshall(I think I spelled that right!). When I read this book it made sense to me. It talks about how certain foods, especially carbs react and effect our digestive system. At that point in time I was at my wits end and figured I... [ more ]
Disneynut I know, and those Tucks wipes are insanely expensive and that's what they are...basically just witch hazel. [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium dose
A akteacher
Jan Dollar Don't take more than one or two at a time (2-4mg). Increase your dose gradually, and no more than 8 per day (16 mg). According to the data, more is not particularly dangerous, but isn't more effective. After a week or so, you'll get a handle on how your body tolerates it. It takes 4-5 days for a blood level to build up. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Consistency
K KiwiPoucher
JeffDC Mine run (sorry for the pun) between liquid and what looks like chocolate cocoa puffs. The puffs are the closest I get to a solid, so I like it when they appear. Jan, I like your looking on the more important aspects of what we deal with. [ more ]
Jan Dollar Absolutely!! I like to think that we don't need to be keeping score on what's happening in the toilet bowl, but focusing on how we FEEL. It is how we feel that is important, not what our poop looks like. If you feel well, you are well! Jan [ more ]
Epic Scotsman I myself prefer things to be firmer. My happiest trips are the ones where things look relatively normal. I know for me, at least, loose stools take me forever. I never feel like everything's out of there. When things are more formed, it's boom and done, so to speak. The more I read on these forums, the more I think I'm probably a bit of an odd case. To each their own. [ more ]
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J-Pouch ForumsGeneral Discussion
thrombosed hemorrhoid
G Guest
Holly M Bootstrap, very interesting "read my story" on ostomies. And Tom yes hang in there. I was never an emotional person but in the few few months after takedown I was an emotional roller coaster. Kind of freaked my husband out for sure. It does get better. I took the advice of others on this site and measured my progress in first hours, then days then weeks. It was a major blow to your body and mind having this surgery. We have all been there for sure. The good thing about this site is we are... [ more ]
bootstrap Oh PLEASE hang in there, Tom. Just always remember there IS a light at the end of the tunnel, however far off it may seem. (And it might be closer than you think.) Try to focus on the things you can control... Clean/spruce up your room or house, turn on some nice music, put on some clothes that make you feel confident, take a walk outside if the weather's nice or go for a scenic drive, watch/read an uplifting movie/book... Sometimes going through the motions even if we don't feel it can... [ more ]
Thea I'm sorry your having so much trouble have you tried taking a daily pro biotic, they can be very helpful with excess gas and bloating. I am having similar problems with the fiber and my bum is just burning and irritated everyday, it is very annoying I feel like it's very difficult to find a happy medium, I'm 14 weeks out since my reversal and it's miserable. I also am suffering with hemorrhoid issues on and off. [ more ]
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J-Pouch ForumsGeneral Discussion
Alien is back in my abdomen!
TE MarieTE Marie
TE Marie bootstrap, 1 cm is better than 2 they say I have left. My Mayo GI, Dr. Edward Loftus, Jr. said basically the same as Dr. Shen. He said to go to every other night and then hopefully I will just need it a couple of times a week for maintenance. It's trial and error to find what works for myself. I went 4 nights as I didn't want to mess with it at my son and daughter-in-laws house...Now I know, my bad. I have a hard time with the cost of them but they are covered under my insurance, after I get... [ more ]
bootstrap Oh boy. I'm sorry you're dealing with that on what sounds like such a regular basis. I sure hope I can avoid this cuffitis business since my surgeon said I have less than 1cm of cuff left. o.O Good luck... sending healing vibes your way. [ more ]
n/a Yes - Dr. Shen, and now my new GI guy recommended taking Canasa - maybe forever. New guy also said some recommend it as a "preventative" for cancer in the area. I don't think that type of prevention has been proven anywhere, but I'm currently taking it 3/week to prevent cuffitis. I do hope it works for you, TE. [ more ]
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J-Pouch ForumsGeneral Discussion
So...
SpookySpooky
Spooky Mini-update on this... So I saw my GI. He called my symptoms "somewhat unusual" particularly because they are so intermittent, and because I am having absolutely no other associated problems. He has ruled out cuffitis and pouchitis, and he doesn't think it's c.diff because the symptoms are too transient. Since I have not had any recurrence in 3 weeks, he doesn't want to do anything invasive now. But wants me to keep a record of anything that happens in the next 3-4 weeks and then call him... [ more ]
Spooky LOL [ more ]
kathy smith I absolutely agree! And better safe than sorry sooner than later. [Could I possibly have come up with more platitudes?] kathy [ more ]
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J-Pouch ForumsGeneral Discussion
farted 4 weeks out
G Guest
Former Member 6 days post takedown and I am now at 8 successful and 4 unsuccessful. They key really is having a fairly empty pouch and be laying on your back when that dreadful gas pain comes, and quickly as you can prop your butt up, and carefully oh so carefully control that sucker as he squeezes out. Having a bit of loo paper handy to do a quick check just in case is also mandatory! lol. Ah the fun things in life indeed! I am going to keep a tally for as long as I can. Winning this race is something... [ more ]
KiwiPoucher Thing that really upset me in hospital is the fact that none of the nurses seemed to understand that the only way to release anything for me was to be lying down. I had ileus twice and in the end that was the only way to get things out. Really was made to feel guilty and lazy for messing my diapers. [ more ]
NewPouchMike I have always found gravity plays a huge role. If I'm standing up much rarer for me to be able to successfully achieve that phenomena. However, if I'm sitting or far better reclined or the best is lying flat on my back.... I can flatulate reoutinely if reclined or flat on back. If you havent tried the reclining/flat technique... give it a try.... [ more ]
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J-Pouch ForumsGeneral Discussion
Blood in stool,when Gastro did a check up?
L LilMoe03
LilMoe03 Oh the tiny blood came out when dr tried to examine his butthole. It came a tiny put on his glove. And my son has autism n adhd so i told him my son gets anxious and will never complete examination without puttin him to.sleep or something. [ more ]
LilMoe03 No he has never been dilated or anything. Been five months after surgery. My son cant seem to walk or sit well. His bm minimized to 6 daily. We tryin to find out why he has these problems. He requested a pouchoscopy. [ more ]
Spooky Hi LilMoe, If this happened shortly after the exam, and it was a small amount of blood, then most likely it's nothing to worry about. The pouch can be easily irritated, so the digital exam may have caused a small amount of bleeding. Also, the fact that it was uncomfortable may mean your son has a stricture or cuffitis, both of which can cause bleeding. However, if the bleeding continues or there seems to be a lot of blood, then definitely call your GI's office and let them know. They may... [ more ]
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J-Pouch ForumsGeneral Discussion
Australia's best J pouch specialist
T Traveller
hever Hi Gary, love your attitude, I also suffered with opiates and was much better off than on them, my surgeon Dr. Borten was fantastic but unfortuately now retired(Gold Coast, Qld.), had a botched procedure in Jan 09 inserting PTQ Implants into the anal spincters to give better control. Completely stuffed me up, pain, agonising pain is all I had out of it, and to an extent still do. Apparently, they have broken up and migrated to who knows where. One piece rejected, I wasn't believed until the... [ more ]
Traveller Thanks everyone for the feedback. I am starting biofeedback on Friday and will give that some time before I go for a second opinion. Lixxie. The first few months after my op I referred to the surgeon for primary care, but I just kept going downhill and they couldn't work out why. So then I went to a IBD nurse practitioner who put me on to a gastroenterologist who helped me back on the right path to recovery. It was as simple as removing opiate based pain meds. I didn't feel as nauseous, I... [ more ]
Former Member Forgot to mention he is a professor of anaesthesiology, not Colorectal surgeon. But he works in Prof John Cartmill (colorectal surgeon) team basically at Macquarie. My last 2 surgeries were with John doing the surgery and Tillman managing the pain aspect. I don't know Brisbane that well sorry. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Medical Marry-Jane and driving????
skn69skn69
Subzeromambo The rule in our house is the same for alcohol and marijuana. No driving after either one, regardless of how much was ingested. It may seem strict but I live at the top of a steep hill with very windy roads. [ more ]
bootstrap On another note, the medical cannabis tincture that I use gives me the medicinal benefits but does not affect my head in any way... I am left relaxed but clear-thinking, so I would feel pretty safe driving with it, even though I primarily just use it before bed anyway. [ more ]
bootstrap Here there are two separate laws: one saying if your blood alcohol level is above 0.08% you can't drive. Another that is just regarding "driving under the influence of intoxicants". In this case intoxicants can refer to anything that impairs your ability to drive, including prescription medications (like pain-killers), so medical marijuana would fall under this category. However, as far as I know there is no way to conclusively test if you are currently stoned, as blood tests would show... [ more ]
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J-Pouch ForumsGeneral Discussion
Good Study/Stats on JPouch
FM Former Member
Former Member Hi Boot Strap. Spot on. It was done at Cleveland so only top surgeons. I think though that anyone going for a J Pouch should only seek out the best surgeons to do the job! I live in Australia and found a professor of Colorectal Surgery who had actually done 2 years at CC working alongside Vic Fazio every day. He also consulted to a Bio-Medical Firm in America when he was there on the design and development of laproscopic tools which are now used today! When he told me that I felt he was the... [ more ]
mgmt10 Its mportant to remember too that they have come a long way with "tweeking" the procedure in the past 10 years. [ more ]
bootstrap As I looked more closely at the study, here are a few things to keep in mind when looking at these stats: 1) This study was done entirely on Cleveland Clinic patients, so the statistics represent some top-notch surgeons. Success rates are always higher with more experienced surgeons. 2) Since this study was done ten years ago, "the last five years" refers to the time period around the year 2000. I'd imagine that rates have improved even more since then. 3) This includes both hand-sewn and... [ more ]
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J-Pouch ForumsGeneral Discussion
Any j-pouchers here whose UC was mostly very very mild?
B Badplumbing
CJB Bad Plumbing, I had bad flare ups, and amazing remission in between. The time between remissions just got shorter and shorter until 15 years later I opted for the j-pouch. Just don't forget about us people who are completely, and totally, 100% happy with their J-pouch. It happens! Best of luck with your choices. CJ [ more ]
Avgass Hi Badplumbing My UC was mild most of the time because I was always quick to get onto medications when it would start to flare. I did get the odd month where life was a bit difficult but most of the time I was OK and hardly ever took a day off work (may have only ever taken one day if my recollection is right). The reason I had to go for surgery was my colitis became steroid dependant. When I would flare I would take 50 or 60mg of Pred to induce remission and then would flare again when I... [ more ]
killcolitis Jan, Yes I guess that's it. I know it's different than the top down approach most docs in the US are using but I think our GI feels that the risks of low dose pred are less than the big guns (and she is a paid consultant for the company which makes remicade). The growth failure is definitely an issue but not with low dose alternate day. She seems to worry that the UC will in fact be CD, which is more common in children so perhaps that's one of her concerns with surgery. Again, not at all the... [ more ]
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J-Pouch ForumsGeneral Discussion
Did anyone here try or consider rifaximin/xifaxan before surgery?
B Badplumbing
killcolitis Yes we tried rifaximin. My daughter's Gi is a big believer in antibiotic therapy for the treatment of UC and she had us try it based on the small amount of research which exists. I had to have it imported from Italy as it's not sold in Canada. It helped for a while with bleeding (almost stopped it) but nothing else in our case. I think it's worth a shot. [ more ]
mgmt10 I was on Doxycycline, which is an antibiotic as well, when I had UC being treated for Lymes disease. I can tell you that my UC symptoms came to a halt for a while while I was on it. It was like a miracle. However, as soon as I stopped taking it (I was on it for about 2 months) bam, my UC flared all over again and worse than ever. I really don't think it's a reality to take antibiotics to treat UC. Eventually it's going catch up to you. Just my opinion. [ more ]
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J-Pouch ForumsGeneral Discussion
Possible Hernia
TD Tracy D
skn69 Hi Tracy, Well it is possible expecially if it is around the old stoma scar (they usually allow them to close up on their own but there can be a weakness that herniates)...if it is a small hernia and does not bother you too much (obviously not the case right now) the doctor will tell you to leave it alone but if it is painful or causing trouble then yes, it may need fixing...most often they can do it through laporoscopy which is not open surgery but minimally invasive (but still a general... [ more ]
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J-Pouch ForumsGeneral Discussion
jpouch blockage vs ileo blockage
K KCookie
KCookie Thanks for the input. It's a huge decision. It's so hard to watch him go through blockages and pain. He's starting to run out of things that are "safe" to eat, and sometimes the "safe" food is still not safe. [ more ]
Subzeromambo I never had a blockage with my ostomy but I also stuck to a low residue only diet. I have gradually added more solid foods over time and now four months after j-pouch take-down, I can eat almost everything but nuts with skins, mushrooms and really fatty foods. I have had small blockages solved by cherry juice and a heating pad. I had a terrible time at the end with allergic reactions to almost all of the ostomy bag adhesives. The j-pouch is tough for the first couple of months but now I like... [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch and Seasickness
CTBarristerCTBarrister
kathy smith Then one would get two patches. kathy [ more ]
CTBarrister The problem with getting the patch is that my ferry rides were spaced 4 days apart, leaving on Sunday morning returning Wednesday night. Apart from the wild catamaran ride in Mexico about 10 years ago, before which I was given a local remedy that worked, this was my first experience with severe and prevalent motion sickness on a boat and it was something of an eye opener for me because I observed firsthand what a serious disturbance can do. The havoc that it caused was almost unbelievable as... [ more ]
Jan Dollar I agree; the j-pouch does not make you more susceptible to motion sickness ( as it does not need to be on the sea), but we definitely are more susceptible to the dehydration it can cause. So, a good idea to plan ahead. Personally, I have not had any instances of motions sickness since my pouch surgery, and have had lots of plane, boat, train, and car rights. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
dehydration
L lab
kathy smith You can also tell if you're properly hydrated by the color of your urine. It should be very light in color. If it's dark yellow then you're probably dehydrated. kathy [ more ]
NJK Chicken broth, Vitalyte, my best results come from plain flavored Ceralyte a WHO level rehydration solution. Water can make things worse....need the electrolytes. [ more ]
suebear The only way to find out if this is caused by dehydration is by getting hydrated. Sometimes water is not enough. Try an electrolyte beverage like Vitalyte and see if you feel better. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Absorption of Water and Vitamins after J-Pouch Surgery
P Pkitty
Badplumbing I am getting close to my first of 2-step surgery myself and am glad to see this thread. As a follow-on question- does drinking enough to not be dehydrated basically also mean putting up with more bowel movements, jn comparison with drinking more modestly, Or is that correlation more in the beginning before the small intestine and j-pouch "learn" to absord water better? [ more ]
fleanut I've read that B12 absorption occurs at the end of the small intestine, and depending on how the surgery goes, some j-pouchers end up unable to get enough B12 from their diet. I asked my surgeon about this, and he said I will be able to absorb it, but I'm still skeptical because it wouldn't be the only thing he's told me just to comfort me that turned out to be false. Next time a go to the doctor, I plan to find out if I'm lacking B12 or any other nutrients. To anyone who knows the answer to... [ more ]
Former Member Im a pretty good authority on water so will give some points below. As always though, these are just my thoughts and everyone should consult their G.P. Surgeon or GI disclaimer disclaimer disclaimer etc etc etc…. so…. This will be long but if you read it all I think it will help not only in giving good advice, but explaining all the details behind how water works with our bio chemistry. I will do a summary at the bottom though for those that want to skip the details Firstly, Hydralyte is... [ more ]
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J-Pouch ForumsGeneral Discussion
leaking all the ime
P pauln
pauln thank you jeans and karbear for your advice i will call my colon/rectal surgeon on monday, i was put on cipro and flgyl and it did help,thank you for taking time from you thanksgiving to try and help me,i know i can be negative at times,but i have decided to fight this as best i can to feel better,hope you both are in great health.pauln [ more ]
suebear Start doing kegels and get to a rectal PT if you can. If it's not pouchitis, you could just be experiencing a weak sphincter. Sue [ more ]
jeane Sounds like you have cuffitis and/or pouchitis. Your GI can call you in an antibiotic prescription and possibly some rectal meds like canasa or anucort suppositories. Do not let this linger. I know you have an appointment on Dec 5th, but I would call your GI and request some medication to help you. They can prescribe them over the phone and you should get relief within a couple of days, especially with the antibotic (eg. cipro, augmentin, flagyl). [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
J Pouch Surgery next week
FM Former Member
Former Member Dr yee cal pacific. Husbands colectomy was at ucsf 12 years ago (different dr) Let's just say they did less than a great job & he's lucky to be alive. Glad you had a good experience there. That is why I am nervous about the procedure. [ more ]
Srf1 I'm 52 and had my jpouch surgery on July 3rd this year. Doing great and have been back to work now since late September. Are you in Northern California? Dr. Varma??? [ more ]
Former Member It's great to see that so many people are living successfully with J Pouch. I was wondering if anybody was 60+ before they had their surgery. My spouse is 60,in great shape, no meds etc (his colon was his only problem). He has such a positive attitude. If anybody can make it work-it'll be him. [ more ]
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J-Pouch ForumsGeneral Discussion
Any Senior's out there?
FM Former Member
Lew Got mine at 62 - so far so good! [ more ]
Former Member Thanks for the input. I feel alot better. Dr Yee at california med center is the surgeon. [ more ]
CeeeeCeeee I'm 72 and had step one of two when I was 61 with step two at age 62. All went well and continues to do so. I've met people older than I am who are living very successfully with their J-pouch. I, too, am from California. [ more ]
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J-Pouch ForumsGeneral Discussion
anyone try just chicken for a few days?
G Guest
Srf1 Chicken? Yes. And chicken soup has been great on my pouch. I'm just finishing up week 13 and have been making up a batch of fresh, homeade chicken soup regularly for the past five weeks. If you don't make your own stock the swanson Certified organic stock is good. I thow in organic potatos, carrots, leeks, celery and slice up a free range boneless, skinless chicken breast and let it simmer for four or five hours. Just made up a fresh batch this afternoon and had it for dinner tonight. [ more ]
John95 I second what Vanessa said. I've been eating a lot more squash since adopting a more Paleo approach. Acorn squash, butternut squash, pumpkin, etc. They're all delicious and gentle on the pouch. [ more ]
Guest my low to no carb day yielded amazing results. 2 bms around 6pm and alls still quiet. normally im gassy and going on 4 to 5 bms that are a bit more difficult to pass by this time. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Post Takedown
A Avgass
Former Member Hi Phil, I had the same thing (very pale pink blood trace) and asked my surgeon. He explained that often the section from the loop ileo to the anus can get inflammed when it is not in use, and this is the likely culprit. This was about 2 weeks before I was due for takedown so to be certain he knocked me out and did a scope. Report came back that the J Pouch was "healthy and supple" but above was slightly inflammed, exactly as he predicted. However there could be many causes so ask your... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
husband having takedown surgery...advice??
FM Former Member
Former Member Laying in hospital right now typing this after my takedown. Surgery went excellent. Did the op at 830am, was walking at 200pm. Next day surgeon said I was good enough to go home if i want but have decided to stay around just a bit more. Can tell you the butt burn already kicked in. I was using baby wipes and calmoseptine. Told my surgeon and he said toilet paper, and baby wipes are no good, as they only spread the microorganisms across the bottom, so after every BM instead of wiping to strip... [ more ]
little greeny I agree with everything! I would recommend that you buy the cream before the surgery and bring the cream/baby wipes to the hospital (hospital TP sucks). Tell him to use the cream before the butt burn ever starts and be generous. [ more ]
samlc25 Calmoseptine, baby wipes, slow transition to foods, and lots and lots of patience... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Having bad day
G GraceL
GraceL Aww kath thanks yeah I just want my life back as My rectum is t in remission I still feel constantly what I felt like with UC always feel as if I'm going to be sick etc. just want rid of it now. Bit better today cried for ages phoned a support group and had good chat with my stoma nurse. It's great to know that even with the first stage of the jpouch wasn't just as bad as the first op. I know I still have the option to cancel the op but both my gastroenterologist and surgeon said rectum had... [ more ]
kathy smith It sounds like you're dealing with Post Traumatic Stress Disorder or anxiety. Your doctor should be able to prescribe something for that or you could try talk therapy with a professional who is versed in this type of thing. You don't have to make a decision right away about surgery. You could give yourself a 'time out' and just enjoy life for awhile. Many people have waited quite a bit of time before deciding on when or whether to go forward. Even IF you schedule surgery, you can always... [ more ]
GraceL Spooky your story is exactly like mine which pardon the pun is spooky. It's so good to hear positive feed back I spent last night having nightmares all night so bad my mum had to wake me up. It's good to know you were afraid too but it turned out right I think I needed to hear this Kiwi thanks for sharing your story. Also good to hear its working out with you I'm so sorry you had to go through that but glad it all worked out ok. Good to know your rectim never went into remission either and... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Happy Thanksgiving...
CatajaCataja
CTBarrister Happy Thanksgiving!!!!! I was a guest of a member at the Bradenton Yacht Club today and they had a really wonderful buffet that included a full salad bar, shrimp cocktail, smoked salmon (very high quality too) with mini-bagels and all the usual fixings, turkey, stuffing, gravy, prime rib, roast pork with some kind of cranberry sauce, sweet potato casserole, and for dessert pecan, pumpkin and mince meat pies and chocolate bread pudding. I also had a mimosa and a glass of Riesling. Hope... [ more ]
Jan Dollar Yes, let's all be thankful for what we have on this day of thanks, including each other! Jan [ more ]
SallyJPouch Happy Thanksgiving Cataja and to all my new friends made and to be made on this site. I am forever grateful for you . . . I was so very alone before I found you. Much love and blessings to you all. Sally [ more ]
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J-Pouch ForumsGeneral Discussion
two months post J-pouch and my son still suffering
F feirs1
KangaRoe Hi Liz, I had my pouch done 20 years ago and a few months out I seem to remember I was going more than that. I remember asking my doctor about this same thing and being worried about it. It takes a while for the pouch to learn how to take over the job of the large intestine. I seem to remember the doctor saying that it could take many months and maybe even up to a year. What your son is going through seems consistant with what I went through and what the doctor told me. As the months go by... [ more ]
Connie My son's frequency immediately after TD (at age 10) was around ten times per day and has not changed much in the 11 years since. For him, it is still way better than an ostomy, the products for which caused enormous skin problems. We bought a bidet attachment before the TD, which has been a great asset for preventing butt burn. The tendency to get BB seems to decrease after several months. He has always preferred Imodium (loperamide) to Lomotil, so your son might want to try that. Also some... [ more ]
Richard FH I would certainly research the effect of bile acid and enzymes on the digestive system and the benefit of lowering and controlling said Sercetions. Cipro and several other antibiotics when taken will lower enzyme output due to the fact enzymes are not so different to bacteria,There has been some good results in limiting the body ability to absorb the necessary ingredients.1 Statins (works very well high risk of side effects). 2 Questran as someone mention before ( predecessor of statins,... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
advice to reduce frequency and gas
FM Former Member
PaulS Frequency seems to be a really individual thing. I've tried lomotil, immodium, metamucil, eating less (which caused gas) and a few other things. I couldn't find a link between medication, eating habits and frequency. I still take metamucil. I normally have 8 to 10 BMs a day. There are times when I only go 4 to 6 times a day to the bathroom. When I started adapting to my new system, I couldn't eat vegetables or fruits. It brought to me cramping and excessive gas. But meanwhile I can and do... [ more ]
Laurie49 Hi fishgirl, welcome to the site. My suggestion would be Beano or Gas X -- if you haven't already tried them. And, I'm sure after three years, you know experimentation is the key in terms of weight and gas. I'd also suggest that you stop counting your trips to the bathroom. For me, once I just accepted that I am going to be going more, suddenly it became a non-issue. It was just my new normal. Again, in terms of gas pain -- try everything you think you should (fiber powder in your water,... [ more ]
mgmt10 One tip I can offer is do not skip meals. I find I get grassier if I don't eat anything. I second the Beano. It works for me on helping with the gas. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
blockage
FM Former Member
Former Member Interesting...I am repeatedly hearing that I need to keep moving, massage my stomach area and now you add bumping around. My natural tendency is to curl up or lie down.....I will definately keep moving next time I feel a blockage. Thanks. [ more ]
CeeeeCeeee We have some railroad tracks in my area. My surgeon jokingly (or not) told us that when we feel an obstruction coming on, to get in the car and drive back and forth over the bumpy railroad tracks! Maybe he's tired of dealing with his patients who tend to get obstructions! [ more ]
Former Member Thanks jan, this is very helpful information. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Memory loss
C Cate87
kathy smith I have memory loss after trauma. One year I was having a horrid time at work and was called into a meeting with all the big wigs. They were trying to get me to admit to something without telling me what it was. We left the next day for a 1-week vacation. I remembered absolutely nothing about the vacation. I kid you not. When we got back, DAMN BRIAN would be telling people about the things we did and saw. I just looked at him like he was crazy because apparently I wasn't even there. I... [ more ]
asdfqwer I had memory issues after my two surgeries. I was training in at work and kept forgetting the things I was trying to learn, so I was assumed an idiot by my coworkers and treated poorly, although they're known to treat many poorly. Anyways, there was definitely something there, for maybe 3-5 months after the surgeries. I was also thinking it could be from coming off the prednisone I was on for over a year. Don't know which of the two did it. I mentioned my memory issues to the surgeon and she... [ more ]
little greeny Memory loss can be a side effect of anesthesia however I usually find that I have memory loss/word mix ups when I become deficient in certain vitamins (especially iron/vitamin b12). Mental health issues such as anxiety/depression can also be associated with temporary cognitive impairment. Finally, do you get enough sleep at night? I know that I usually sleep about 10 hours a night because I get up frequently and don't get as much rest (I know that is hard to do in grad school-i've been... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
need med advice for depression/anxiety soon...
G Guest
Jan Dollar Vicodin shouldn't cause diarrhea. If anything, it would slow things down. Good idea to try halving the dose when starting out though. Jan [ more ]
Guest i got ya. the night i took the celexa i also took vicodin at the same time. vic never gave me diarrhea before but that was awhile ago. ill cut the celexa in half. thanks... [ more ]
Guest i got ya. the night i took the celexa i also took vicodin at the same time. vic never gave me diarrhea before but that was awhile ago. ill cut the celexa in half. thanks... [ more ]
See all 26 replies...
J-Pouch ForumsGeneral Discussion
Cipro Flagyl
Mental KaseMental Kase
Jan Dollar Yes, there is a patient assistance program for Humira through Partnership for Prescription Assistance. Jan [ more ]
Mental Kase I'm thinking that Humira may be on my menu in the near future. Is it an Abbott Labs product? Do they have a Patient Assistance Program? I hear it is quite costly. Thanks, MK [ more ]
Mental Kase Thanks for sharing your Flagyl experiences. I think that many of us have a love/hate relationship with Flagyl because it does work well most of the time but it also causes some unpleasant effects, the tingling finger tips, the horrible taste in the mouth unless you swallow really FAST! I'm finally to that tipping point where I am taking so many meds for so many ailments that I can't sort out what is reacting with what..... Now that I have lost my insurance I will be dropping many of them... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Recent hernia surgery and loss of control......need some reassurance
H Hope 777
Hope 777 Thanks so much, you guys. Just another surprise in j pouch freedom, I guess. I was a little better last night but I think you are right about the pain. I have so much pain and pulling I do not think I am able to relax enough and push enough. I am going to try to keep an eye on my medication time because I do not like taking meds. I think I am going to long without it. Thanks for the hugs......really appreciated! [ more ]
skn69 I am so sorry Hope, Not fair! The only thing that I can think of is that the swelling in the region + the pain is doing this to you and that once the swelling is down (which means that some of the pressure is off too) then you should regain control...there honestly shouldn't be any long term incidence on the pouch for an abdominal hernia repair...not the same region...just give it time and do what you have to do to protect your clothes and bed in the mean time. I know that it is so... [ more ]
Subzeromambo All I can do is send many virtual hugs your way. I don't really know what to say other than I would imagine it will take at least a month before you regain any control. Keep doing the anal exercises? I hope for the best for you. [ more ]
See all 3 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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