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J-Pouch ForumsGeneral Discussion
What's the score with Ilex protectant paste.....?
FM Former Member
Catinthehat and now a word from our sponsor ...ilex is great! It works fast for my butt burn. I have tried other products but have not found anything that works as well. It can form annoying balls or lumps but that's a minor problem. [ more ]
Gentle Now I actually have a similar question about ilex. Is it supposed to harden up? Reading, it seems it does - kinds like my old Cavillon barrier wipes did around my stoma. But the ilex seems to stay goopy - like Vaseline. And I get he same little balls when wiping. I thought I had a defective tube (ordered from random place on amazon), so I have a new tube coming from Edgark tomorrow. But maybe it's not defective and I'm just doing something wrong? For that matter, could I use my old Cavillon... [ more ]
Former Member Update...Update...Update..... It must be the surgical wet wipes causing my problem. Think ilex application instruction say don't use wet wipes. I Just used a damp cotton type wipe to cleanse and then pat dry with cotton wipe, in n out within minutes and could feel the ilex barrier remains intact without the need to reapply. [ more ]
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J-Pouch ForumsGeneral Discussion
would you?
H Handlebar
JJA By the time they develop the science to turn off my IBD genes, I'm going to assume they have the science to grow me a new colon and sphincter from my own stem cells (they have already been doing this with a variety of organs in the lab, for years!) In that case, assuming my insurance will cover it, I'm totally going for it! Even if they couldn't turn off the IBD gene, if they could grow me a new from my stem cells sphincter, I just might take it, because it would likely be a "trade up" as... [ more ]
Jan Dollar An identical twin has identical genes. He may not have IBD (yet), but he and his colon have the same genetic blueprint. But even if it was a regular sibling, you'd be putting the organ into someone with IBD. Jan [ more ]
CTBarrister Is one third of a colon enough colon to do the job? Would you need at least half? If he is a twin I say split it 50/50, just like you shared your mother's womb 50/50. [ more ]
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J-Pouch ForumsGeneral Discussion
Cold/Tapering off Anti-biotics?
slightly_creativeslightly_creative
TE Marie I haven't noticed any problems or change when having a cold. I wouldn't assume that the virus had no effect either. It is frustrating to figure this all out and I haven't. I suggest you try the metamucil. When I use it I do the capsules vs. drinking it. Metamucil generics are less expensive and work just as well. I was told to use less water than the directions say. We take it to bulk our stool up and the directions on the package are for coloned people who use it for the opposite purpose. [ more ]
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J-Pouch ForumsGeneral Discussion
5 days post-takedown eating?
GN Gentle Now
blooming_cy ❤️
rachelraven Apple juice can increase movements. This early on, things will be more up and down, for sure, but things will change over the next year. Go through everyone's tips and see what works for you. It's a lot of trial and error, in the beginning especially. [ more ]
Gentle Now Thank you all so much for the guidance! Since my bowers were relatively calm, I didn't know if that's a good thing, or due to not enough food intake, the meds, or something scary. So I was content not to eat much just in case. But you definitely got me eating as much protein as I can now; I want to heal up right! When things still seemed a little too calm, I drank a glass of Apple juice (just in case there was a block) and ended up going to the bathroom many times and with less control. :-/. [ more ]
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J-Pouch ForumsGeneral Discussion
Bowel prep with a j pouch?
K KeepFighting(Manny)
Scott F So this is for a capsule endoscopy, which most of us haven't had, I think. Presumably the intent is to look at the small intestine, and I just don't know what it takes to clean out the small intestine sufficiently. I'm glad your doctor clarified the requirements for you. [ more ]
rachelraven All my surgeon ever says is NPO after midnight, but I always take a dose of Milk of Mag and do one fleet sized enema filled with tap water to be sure. Never had to do clears or anything the day before. It's always been enough. [ more ]
KeepFighting(Manny) I just spoke to my GI dr and he said it is uneccessary as long as I am on a clear liquid diet the day before. The j pouch will just evacuate everything as liquid anyways. He left it up to me to do an enema (just in case). I probably will just to be sure everything is cleaned out below. I can only imagine us j pouchers having more diarrhea on top of the norm. Your just asking for an unwanted "accident". [ more ]
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J-Pouch ForumsGeneral Discussion
Should I continue?
A adam1
skn69 Hi Adam, You didn't say what you mean by weight lifting...are you weight trainning as in using the universal gym with no free weight work or free weights? If so I you doing body building or Power Lifting? I would seriously avoid Squats (especially full squats) and deadlifts...they both put tons of pressure on the rectal area. Also, do you use a belt or not? Personally I would avoid all Power & Olympic lifting lifts except for bench press and I would wear a belt at all times. I would... [ more ]
Jan Dollar Personally, I think this falls into the rsk vs. benefit scenario. You have to weigh an unknown risk (real, but unclear how high the risk is) against your benefit of how weight lifting makes you feel. If the lifting is not very important to you and you can satisfy your training needs in other ways, it makes sense to stop or curtail your lifting. But, if lifting is what makes you feel healthy, strong, and good about yourself, then maybe that outweighs the risk. You have been lifting... [ more ]
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J-Pouch ForumsGeneral Discussion
New to the Forum, New to the J-Pouch
T TexasProud
TexasProud Thanks for the replies. Strangely, I didn't have any really noticeable blood through my rectal tube. It started after the removal. I've also noticed that it is not every time (just most of the time). I have a followup next Friday. It's scheduled a little earlier since I had the 1-step procedure. I fully intend to tell him if it is continuing at that point. [ more ]
Pluot I didn't have a one step but I had a rectal tube to drain the contents of my pouch after it was created and the contents were definitely bloody the entire time (about 5 days before the tube was pulled). I would say unless you notice a significant increase in blood in the pouch you're OK, but definitely mention it at your post-op appointment. [ more ]
ceew Happy you are doing well since your surgery. I had the 3 step surgery. It seems like a little blood is normal but not for too long. I would keep a watch on it. You should be a ing a follow up with your doctor in a couple of weeks. Talk to him or her about it. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery advice please!
SF Sharon Flynn
Army wife I certainly understand you being a mental wreck. I was too. I had my first surgery in May 2013 with takedown in August. You will have pain of course. The biggest issue I faced was not the pain but dealing with the bag. Make sure you have a nurse helpingou when you get home. My stoma was so flush with my skin I had to have convex wafers to stop the leaking. Once I got the hang of the bag, it was wonderful. I started having a life outside of my bathroom!! I was nervous about the takedown... [ more ]
ccanepa456 I had a 3 step surgery. My first surgery was emergent and I was in the ICU doing horribly in the hospital beforehand. After my surgery I immediately started feeling better although I did stay in the hospital for probably a couple weeks afterwards. I was really scared of the ostomy bag for a while because I didn't know what to expect. I agree, stoma nurses help so much! My pediatric floor gave me a bunch of videos too and taught me everything I needed to know before I went home as well. I am... [ more ]
Boda Funny! I have 4 girls the exact same age range. I didn't have to go through the surgery myself but I was there every second for my daughter. She was very tired after the surgeries and rested a lot after the first and second. I needed help with the other girls while I was helping her at the hospital and at home. She wasn't suppose to lift anything heavy for awhile so for you lifting kids, laundry, etc. might be harder for awhile. As far as the ileostomy and bag are concerned it is hard but... [ more ]
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J-Pouch ForumsGeneral Discussion
sugar free endurance sport fueling/hydration?
H Handlebar
ccanepa456 I like Nuun as well because its pretty cheap! Drip Drop ORS is another and is one of the big guns supposedly and is a medical grade hydration without sugar. If you're willing to pay a little extra, it seems to have a lot of good hydration benefits. Coconut water is very good for hydration I have heard as well, but I do not like the taste that much. [ more ]
Handlebar I took the plunge and had some Nuun at lunch and was OK and had another about an hour ago at around 7:30pm just to make sure it wasn't a fluke. Good news is my bum has not turned into a bottle rocket like it does with sugar products. I have to admit that I drank this with much apprehension and will use this product again. I think I might still look into Lytebalance too. It is always nice to have options. Thanks for all the responses and asking me to write about how it went after trying it. I... [ more ]
TE Marie ...and the All Day tabs don't taste good so 2 reasons not to get them. Not to muddy the discussion up but I also use a product called LYTE BALANCE. It is an electrolyte concentrate with no sweeteners, caffeine, colorings or calories. One 16 oz bottle is enough for 64 sports drinks equivalents (the bottle says so). When I get super dehydrated I use this. It costs around $25 from Amazon. I use 2 capfulls in 8 oz of water but you can put it in anything - hot or cold. Some coloned people use... [ more ]
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J-Pouch ForumsGeneral Discussion
Last surgery tomorrow - thank you
LambiepieLambiepie
Lambiepie Yes, dgtracy. I was surprised but very grateful. My surgeon said that the anticipated three hour surgery turned into four and a half hours because of the adhesions. I just got home an hour ago. [ more ]
dgtracy lambiepie - they were able to remove the pouch laperoscopic? [ more ]
Lambiepie TEMarie, I started soft foods on day three and it made a world of difference. My head cleared and my body woke up in a good way. I'm on day 7 in the hospital, possibly staying until tomorrow if Infectious Disease says one more day of IV antibiotics. It's OK; better safe than sorry. Because I was ready for this surgery, it was my choice, and it was the one I was healthiest going into, my recovery is so much better. I found out that my pouch had adhered to my pelvic wall and bladder (common,... [ more ]
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J-Pouch ForumsGeneral Discussion
Scope
S SteveRM
PSJ I for one am sick of pain everything I do seems to involve it. while I have had them done with mild to moderate discomfort last time he went in WAY too far and I turned white as a ghost. it hurt pretty bad so I am electing to be put out altogether. I also just has an abscess that was fixed on the fly with numbing needles (ouch!) and that hurt like crazy! So with my sleep apnea etc I want to be out completely. Maybe a sedative would be OK but just this once I don't want any pain. Oh I am... [ more ]
PATRIZIA Thank you all for the replays to my question. Will see my surgeon end of June and I feel, after reading your replays, I might ask for a scope then. I will update. [ more ]
jkdwyer53 Just had one Wednesday and wouldn't do it without the twilight. I have a low tolerance for pain. [ more ]
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J-Pouch ForumsGeneral Discussion
Help!
P Pete7713
Scott F I had a single-stage procedure. Surgeons no longer seem to like them much, but I got it over with in one miserable chunk. I was certainly good to go a few months later (back to work in 6 weeks), but of course complications could have changed that dramatically. [ more ]
dtmack Took me over a year for all my surgeries. According to my surgeon in Cleveland, the less time you give the pouch to heal, the more complications you are opening yourself to. I waited 6 months between each one. Good luck. [ more ]
ATXGuy Just my 2 cents... I had my first & only flare 7 months after my wedding, and my bowel ruptured just after the 8 month mark. These aren't easy surgeries, and they will test any relationship. I was fortunate that my wife is a rock, and we came through this experience stronger than when we went in... You've got two not great options: 1) Delay surgery, which as CT notes can lead to serious complications medically depending on your condition. You'll also be beginning your married life with a... [ more ]
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J-Pouch ForumsGeneral Discussion
What now
K kk
clouseau I just went thru an amazing program to get rid of some allergies. This will sound like a quack treatment but over 200 medical practices use it now in the USA. Science is from Australia. I was getting incredible eye itching where I wanted to rip out my eyes. I went thru the Advanced Allergy Therapeutics testing, AAT, at my functional medicine MD's and they found I was allergic to a glue that I just started using on my body and they also found it was the blueberries I had started to eat larger... [ more ]
kk Thanks Sharon!!! At first I thought it was from applying body wash (thinking it was just lotion) b/c off bottle looking more like my lotion/not my body wash. Sounds like a dumb thing I did but purch. on shelf as lotion/used when running out of other. With everything packaging is sometimes changed so didn't realize until hubby asked what I was putting on me. This morning I saw bruises on my arm where all I did was lightly press showing my husband just that little pressure hurts. Thinking it... [ more ]
skn69 I am so sorry KK, This is just not fair! Alergies have a nasty habit of getting worse over time and their symptoms or side effects get worse. In the begining you may have mild or medium break outs of rashes, redness, joint inflamation, pain, shingles or other symptoms but as time goes by your body reacts worse...things only get worse. You must tell the doctor who prescribes them that you are have an alergic reaction to them and to change antibiotics. It is no joke and should not be taken... [ more ]
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J-Pouch ForumsGeneral Discussion
Problem... 2
MysticobraMysticobra
Mysticobra Thank you too Jan for the information and the distinction between the two. Interesting. Scott. She put me on prednisone for about 10 days to bring the swelling down. No more tests. Said it may speed up the healing too. I know it makes my nails and hair grow faster. LOL. It didn't hurt when I got up this morning. I didn't take any pain pills overnight. It doubled me over when I got up the morning before though. I don't think prednisone works that fast. I do feel where it is......bit of pain... [ more ]
Jan Dollar A chronic perforation is different than an acute one. An acute one is like a ruptured appendix; a sudden event. Chronic perforation occurs gradually over a period of time, with time for the body to wall it off from the bloodstream. You were probably sent home based on your condition and stable state. Staying in the hospital when not absolutely necessary just exposes you to infection. So, just monitor uour symptoms and keep a daily log of your temperature to note any trends. Jan [ more ]
Scott F I agree, Richard - you shouldn't/wouldn't have been sent home with a true perforation, I think. Do they have a plan for how to work out what's going on? More tests? [ more ]
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J-Pouch ForumsGeneral Discussion
all my neighbours are getting UC!
E elaine
rachelraven My neighbors who moved here from NJ have the dad and two of the four kids in the family with Crohn's. The dad's sister has UC. Then there's my daughter and me two doors down with our IBD issues. So that's 5 people on 1 block with IBD. Two get Remicade, three get Humira. We all have Eastern European backgrounds/history. The dad in the family is of Jewish Ukranian descent (mom is not). I'm of Polish and Ukranian descent (also Italian), though not Jewish that I know directly in a religious way,... [ more ]
TE Marie I agree with Scott about random distributions. I'm thinking back decades to when I studied about them at the university. It is interesting about the weather aspect too. I didn't know of anyone with IBD until I was diagnosed! Since I've discussed my disease with others I've discovered others with UC or Crohns. The UPS driver, at my office and at home, told me he use to have UC but had an operation and was cured. I don't think he had a j-pouch because he said surgery instead of surgeries. He... [ more ]
Scott F There's no evidence of an infectious or local environmental cause of UC. On the other hand, random distributions don't look *anything* like evenly spread distributions, so pseudo-outbreaks are exactly what happens when things are truly random. There are lots of streets with no UC at all, and that's also to be expected. And as Lesandiego says, you won't even know about it unless it's acceptable to discuss with a neighbor. [ more ]
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J-Pouch ForumsGeneral Discussion
Ampulary adenoma
JDJD
JD Thanks, Scott. My GI surgeon is Dr. Martin Heslin, and I trust him completely. We should make the decision in the next week or two. [ more ]
Scott F I'm sorry you have to deal with this, Jason. This is tricky stuff. My only advice is to try to get an experienced surgeon that you trust. [ more ]
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J-Pouch ForumsGeneral Discussion
Advice
T Thommo
ATXGuy I had my takedown on Oct. 27th of this year. In the last two weeks or so, everything seems to have settled down quite a lot (though I still keep looking up, waiting on a shoe to drop). Generally, I sleep through the night, waking and needing to go between 6 and 8 am, after going to bed and emptying around midnight. Generally, though I have to go immediately on waking, it's not a "shoot out of bed and rush to the bathroom" feeling, more of a "guess I better get up and handle this" feeling. [ more ]
Paul H I'm 5 months post takedown, it's been a rough ride & I questioned my decision but for the past 4 weeks have really noticed an improvement, currently 8 BMs a day with 1 or 2 at night, eating & drinking all sorts without too many problems, walking in the mountains, working on the olive farm & a bit of construction work. I'm very happy with the way it's going. Keep a positive attitude & be patient, good luck. Paul [ more ]
Thommo Strange and Shainy - It sounds like you have been in a very similar place to me. The very best of luck for your takedowns. I've spoken to my surgeon and I'm on the waiting list. Thanks for the advice [ more ]
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J-Pouch ForumsGeneral Discussion
How much of the rectum is removed?
M Menyseko
Zanika Hello, I had my surgery in March 2007. Because my rectum was also diseased due to the UC, very little was left of the rectum. The j-pouch was hand stitched carefully (from what I was told) and took over six months to fully heal before I had the takedown. [ more ]
suebear My UC was limited to my rectum, I had a stubborn ulcer that would not heal. I had jpouch surgery with a mucosectomy and I've been healthy and happy for 14 years. If you are worried about continued cuff problems, talk to your surgeon about a mucosectomy if you are considering a jpouch. If you're going for a permanent ostomy, talk to your surgeon about his/her style of removing the entire anal area and sewing it closed. Some close the area, others don't. Sue [ more ]
Menyseko Scott- 1-2cm doesn't seem like much. I know I have superficial ulcers in my sigmoid and a part of my rectum, but I'm not sure how far down my rectum is infected. I hope it isn't too much. I know that whenever i don't have a flare, I'm able to "hold it in", so maybe it isnt too much. But I have had an abscess there before. Thanks for the response! Mysticcobra- I think talking to my surgeon before the actual procedure is a good idea. I would like to make it clear that I would absolutely prefer... [ more ]
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J-Pouch ForumsGeneral Discussion
Biofeedback??
L Laciep
Jan Dollar TI have both a cystocele and rectocele, but not an enterocele. Had them for nearly 20 years. My GYN diagnosed them ages ago. I asked if they were related to my j-pouch surgery. She didn't think so. She said it was most likely due to childbirth complications (large baby, outlet forceps, 4th degree lacerations). Kegels were recommended to help improve pelvic floor tone. I'm not good at keeping up with those, but they are supposed to help. I do have periods of what feels like outlet... [ more ]
Scott F I haven't experienced this, and I'm sorry you're going through it. It strikes me that this might be a situation in which you could get some relief, at least temporarily or periodically, by draining the pouch through a catheter. I'm not suggesting this is necessarily a permanent or ideal solution, though several folks here are strong advocates for this method, but it might provide some relief and at least delay the need for surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
Forks over Knives
Wanna Be HealthyWanna Be Healthy
Spooky Sharon, my pouch does fine with quinoa. I've been eating it for years, in fact before it became an "it food." In fact, very few foods irritate my pouch, per se. The main problem I have is with adhesions at the old stoma site - I have to pay attention to the amount of roughage I'm eating as that's my problem area. But quinoa doesn't seem to cause blockages. I suppose if I ate a ton of it at once, it might, but so far it's been fine. Foods that would cause me issues include things like... [ more ]
Wanna Be Healthy I'm not sold on the Forks over Knives (vegan type diet). I'm picking up the videos tomorrow from the library and a book. I'll try to keep an open mind. I do want to feel better, but maybe that's the diet I should have followed when I still had a sick colon. [ more ]
skn69 Can you and your pouch survive quinoa? I can't...Can't do whole grain rice or boulgour either...they turn into a bottleneck in my gut and pouch. As for tofu...I can't get it down...makes me gag. Its a texture thing. I can barely slurp down the tiny little squares that they put into miso soup. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Dr.and insurance recommendation in LA
S sweetpeasmom
Sarah1980 I had j-pouch surgery done by Dr. Jonathan Sack at UCLA. He is amazing!!!! I don't even have a GI doctor anymore, I see him for anything I need GI/Pouch related. He is very thorough and always make me feel like I am his only patient. I don't know if you're still looking, but I strongly recommend him. [ more ]
sweetpeasmom Thanks for the recommendations. I believe Dr. Melmed is only at Cedars Sinai which does not appear to be in-network, tho' he seems to be on the in-network list. We made an appointment with Dr. Hwangs young partner, Dr. Sheibani at USC. Hoping she is good. A little off topic, but in 9 hospital stays at 3 different hospitals, her GI never happened to be on the "in-patient" schedule so she always ended up being cared for by a partner she'd never seen before! [ more ]
Rebe0505 hi i will recommend a dr. melmed in l.a..he has been recommended to me from dr.shen for my l.a. dr. he is very knowledgeable about pouches...he likes to see you about every three months to keep current as to your condition.. [ more ]
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J-Pouch ForumsGeneral Discussion
Grandson's severe bowel problem
Wanna Be HealthyWanna Be Healthy
Wanna Be Healthy Sue, That sounds like excellent advice. I'm going to look for a pediatric GI doc (maybe check with my GI doc's group to see there is one there or one they recommend). And then have to convince my daughter to let me or her or us take him there for an appointment. Sharon, his stools (when it finally comes out) is big, dark and hard. Sometimes there is undigested particles of food in it..... that's probably not unusual due to the fact he doesn't chew his food up well when he is very hungry. [ more ]
skn69 Pegg, I am so sorry...this is very, very wrong. You said one sentence that had ice running through my veins...she had to dig it out. That remined me of me little. I had no rectum. Zero. There was nothing in there to help the push things out and my grandmother had to do just that...dig things out. It is not something people either think about or look for...but it is possible that the rectum did not decende down completely and he therefore cannot push it out. What form does his stool take when... [ more ]
suebear Encourage your daughter to take him to a pediatric GI. If you have to use your family genetics to bowel disorders to convince her, do it. This poor child. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Traveling to China soon: Tips?
Olive OilOlive Oil
hfc I went with my family to China in 2012 to run the Great Wall Marathon. At the time, I was 53 with a 8 year old j-pouch. As long as you are staying in hotels that are used to international travellers, you will have western bathrooms. Out in public areas, toilets tend to be rather smelly and are squatters. Take baby wipes with you. I took pepto bismol one tab twice daily, only drank bottled water or beer, and did just fine. In the hotel, the best bet for western type foods tends to be at the... [ more ]
skn69 Most large hotels, starbucks and American chains have good toilets...For the rest...I have no idea. Ps. Never took pepto but always carry imodium with me too and ant-acids (I never take them when I am home). [ more ]
suebear I only take Pepto if I need to; I don't take it as a pre caution or a preventative. I don't avoid any foods other than ones I know I won't like the taste of. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
K-pouch gas
B Bodoni
skn69 I meant Green-liquidy output...that is my 1st sign of pouch sickness no matter what else is wrong... You know your body and pouch best...but cut down on the bad food and try to center on proteins, veggies and some easy to eat fruits...and start those probiotics...I take OTC, big box brand ones and they do the trick...never been so gas-free in my life...also, other than a couple of binges lateley (holidays) I have reduced the sugar greatly and avoid all of the white flour/potato/pasta/rice... [ more ]
Bodoni I have no fever. No bleeding. No cramps or pain. No pouchitis. I think it's too much sugar and as you say - too many carbs. Green output does not mean that much with us K-pouchers. Meds and foods can cause a rainbow of colors. ie; Pepto Bismol causes black stools. I think Gas-X may cause green output. [ more ]
skn69 I have found that sometimes when I am at the first stages of a stomach bug or flu I get lots of gas, cramping and/or bubbling around in there. Could you have something brewing in there? It could be SIBO (in which case you know the routine...Cut down on carbs/starches and sugars and increase the probiotics) or just a seasonal change in your diet? We don't eat the same from season to season and maybe your gut is telling you something??? Mine is a sort of barometer for seasons, weather and any... [ more ]
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J-Pouch ForumsGeneral Discussion
Urge to empty pouch even though it is not full
FM Former Member
Scott F The symptom that made my GI decide it was SIBO rather than pouchitis was significant gas. The doxycycline (three months worth) seemed to fix me up. [ more ]
Rebe0505 scott just read you tHread about you taking doxycycline for S.I.B.O?? CAN YOU ELABORATE.. how did you know S.I.B.O. FROM POUCHITIS? HOW DID YOU COME UP WITH DOXYCYLINE?how long did you take it and how did it work for you? [ more ]
Scott F As far as I know the bacterial species responsible for SIBO (small intestinal bacterial overgrowth) are not the same as the species found in various probiotics. I certainly wasn't advised to curtail my (prescription) probiotics while I was treated for SIBO (with doxycycline). Also, pouchitis is a set of conditions that can present differently at different times. The gut microbiome is profoundly complicated, and we understand such a tiny fraction of that complexity that we shouldn't be overly... [ more ]
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J-Pouch ForumsGeneral Discussion
Problem!
MysticobraMysticobra
Mysticobra Why is it when it's going good and you say it is to someone it all falls apart? Just weird. I bet it has happened 4 times to me. Urges are suppressed by the drug but now I have pain from sitting. I drive a forklift at work and the bending at the gut all day is painful. In fact I am swollen in the stomach area. From one problem to another. May go away with time. We will see. I am just glad urges are 95 percent gone. I can sleep. Richard. [ more ]
Lambiepie I have the same superstition, so I'll just say excellent - hope it stays this way! [ more ]
Mysticobra Night number two.... No puns.... Seems to be working. Whoo Hoo! Now if I can figure out why my guts hurt so much being in a sitting position all day! Goin good though . Thank you for the anti spasmatic advice. It works... Not 100 percent but darn close enough. [ more ]
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J-Pouch ForumsGeneral Discussion
Petition: Disablity-Inflammatory Bowel Diseases
S sue77
TE Marie My disability claim was approved by the social security administration in 3 months, the first and only time I filed. I kept hoping to get back to work so didn't file as soon as I could have. To my surprise I also received one year of back benefits from the date I filed. My advice to anyone who is disabled to go ahead and file. Make sure your doctors agree you are disabled as they will all be filling out paperwork on your behalf. I had to meet with one of their MD's and a psychologist during... [ more ]
CTBarrister Social Security Disability and private long and short term disability insurance plans are two different things and one should not be confused with the other. What qualifies as a disability under private short or long term disability plans may not qualify under SSD and vice versa. Totally different legal standards. One is determined by contract and case law and one is determined by administrative law/ administrative law judge using different legal criteria and standards. [ more ]
Mysticobra I have someone looking into my 9 plus months off while having pouch surgery. I have been back to work for six months and actually got a call from my rep. saying I was approved for disability. I filed while I was off cause at the time I never thought I would be able to work. Anyways I had to tell her the truth and say I was working and to check into the time I was off. She said I may have been eligible for temporary disability. I will keep you informed. Takes forever to hear from them so it... [ more ]
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J-Pouch ForumsGeneral Discussion
Iritis??
H Hoping
n/a I've gotten iritis about 7-8 times, however, not for a few years (knock on wood). I don't think it was related to antibiotics, but as Jan said, an autoimmune issue. See a good opthalmalogist. I had to use steroid drops and dilating drops for a very long time during each episode. Mine seem to have resolved with no issue other than more floaters. [ more ]
allswell I've had iritis off and on for 15 years. Just had my worse flare yet. If you have any specific questions I may be able help. Usually no big deal but my last one was a doozy. I still can't see clearly, so it's important to catch it right away. [ more ]
Jan Dollar I would suspect this to be more related to autoimmune disease than what you are treating it with. Iritis (uveitis) is associated with UC and other autoimmune diseases. Xifaxin will not likely help the iritis. You may need prednisone, but steroid eyedrops will probably be enough. http://www.ccfa.org/resources/eye-complications.html Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Travel tips
Marianne77Marianne77
Marianne77 Yes, Port Authority was gross. I think I used a whole roll of toilet paper to cover the seat. I did what you said and used my iphone. If I didnt know the direction, I would just start walking and it would show me the direction I was going in. I'll use the ESB trick the next time. Next week will be 6 months since my takedown and I am starting to feel so much better. I even managed to go for a run today. Maybe by this time next year I'll be able to go back to NYC, worry less and enjoy it more. [ more ]
CTBarrister And by downloading the location based Yelp and Toilet Finder apps, you will locate the Starbucks closest to you. If you are on the southwest corner of 42nd and Lexington, for example, looking north, and open your Yelp App and search "coffee shops", it will send you to the Starbucks on Lex between 42nd and 43rd. My guess is if you are on the southeast corner of 42nd and Lex it will say 0.1 mile. With these Apps, you can walk anywhere in NYC and there will probably be a toilet within .1 or .2... [ more ]
Pluot Every Starbucks in NYC has a public bathroom, and they are pretty much everywhere. Not always the cleanest but definitely better than Port Authority. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Epidural during Takedown.... ? Choice of anaesthetic... If any ?
FM Former Member
Former Member I've had epidurals for two open surgery proceedures, once for my colectomy many years ago and more recently, during my J pouch surgery and on both occassions I never experienced any pain. During the 2-3 days whilst the epidural was being administered, my only discomfort was when my body was sprayed with an ice cold spray every hour to ensure the epidural was operating as intended. Just prior to my J pouch surgery, I was advised the epidural was the most effective method. [ more ]
kariA Truly apologize for hijacking this discussion. Can anyone explain the benefits of using an epidural block for the colectomy? is it always used? what are the benefits over morphine infusion? i only had epidural block in one of the deliveries, it didnt do me so well... [ more ]
Former Member Thanks Marianne, I was thinking so myself but wasn't sure, hence my question. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Bladder Fistula
CC colonless commodore
Jan Dollar Could be a bladder fistula, as a complication of your surgery, even if there was no surgical error. However, an error would increase the risk of such a complication. On the other hand, it is possible you have Crohn's and this is a result. I agree that a urology consult is in order. Air in the bladder could be due to an infection, but only specific bacteria would be the culprit, and it is pretty rare. Jan [ more ]
Jaypea A urinary catheter will not puncture the bladder wall and should not be the cause or air in your bladder. If your surgeon does not want to deal with this problem you should get an urgent consult with a urologist. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
painful intercourse
FM Former Member
skn69 One sort of needs to know what the lump is in order to fix it...cyst? Abscess? Something else? They really have to find out what is going on and why the pain??? We know 2 things...it shouldn't hurt and shouldn't be uncomfortable...So if it is you need a good GYN to check it out. Sharon [ more ]
LisaT Same here. It feels like there's a lump on the right side about half way up. It's excrutiating. I feel so badly for my husband. It's hard to think about the next 30 years with no "regular" sex. Tried almost everything creams, pills, even HRT to no avail. Is there a surgical procedure to correct it? [ more ]
TE Marie Ljk, I don't know how old you are, assuming you are now postmenopausal I agree with JHindrix. I use a vaginal cream called Estrace. Plus KY helps as well. It's hard to get in the mood when you are in abdominal pain of any kind. The last thing you feel like doing making love. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
The Trials and Tribulations of Clean Eating for a JPoucher
S samlc25
skn69 I used the whey protein chewable tablets for years...They tasted like strawberry milk shakes, and could pop 2 or 3 during a class with a bottle of water and have enough energy to finish my class without any problems...they did not effect my pouch like milk did. Sharon [ more ]
ATXGuy Curious about Whey Protein powder. I've used Paleo Meal unsweetened (https://www.pureformulas.com/paleomeal-powder-drink-mix-vanilla-540g-by-designs-for-health.html) in my morning smoothie since my first surgery, with no ill effect...but there's also a product by the same producer called Pure Paleo Protein... [ more ]
suebear My diet is high in fresh fruits and vegetables. Breakfast is plain yogurt with fruit, lunch is diced apple, banana, and orange with cottage cheese and nuts with dried fruit. Dinner is either a large salad, a vegetarian loaf, or a baked apple. My frequency is very high but this is the way I like to eat. Your bleeding is likely from the nuts, don't worry about it. The vessels in that area lie close to the surface and can be easily irritated. Sue [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Artificial sweeteners
rachelravenrachelraven
ATXGuy And, the best answer is probably, use whatever sweetener you like, but use it in moderation. I lean towards natural and as minimally processed as possible, but that's generally my philosophy on what I consume, though I'm certainly not immune to the charms of sweets, and sometimes just go for it if I want it. [ more ]
Jan Dollar Short answer- no. You are correct. No one-size-fits-all. But I think it is generally true that the more sweets you consume (real or artificial) your brain wants more. Jan [ more ]
CTBarrister Can't we summarize the whole thread by saying that whether it is a natural or artificial sweetener, it's a choose-your-poison situation, particularly if you have SIBO or diabetes? Is there any one item that will sweeten food/drinks that doesn't have some drawbacks? [ more ]
See all 25 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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