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J-Pouch ForumsHelp! Need advice now!
Living with a Seton- Advice?
G Greenie
Greenie @Jaypea thank you for taking the time to respond! I'm cautiously optimistic and looking forward to getting on with life and adjusting to my new "normal". [ more ]
Jaypea I had a seton for 11 months. I found it to be really sore for the first 3 weeks requiring Tramacet for the pain. After that it became just annoying. I always wore a pad as the drainage was constant. Not a lot but always there. A sitz bath became my best friend for keeping clean. I returned to work once I stopped taking Tramacet and could manage on Tylenol and Advil. (I’m a critical care pediatric nurse). i travelled, swam in pools and the ocean, and got on with this journey called life. [ more ]
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J-Pouch ForumsPouchitis
Treatment of Chronic Pouchitis
PA Paul Alba
Bubba1028 That’s interesting that sugar sparks a pouchitis flare for you, Still Standing. I love my chocolate, and would hate to give up my indulgences but if it helps prevent my symptoms, I guess it’s something to look into. I’ve been trying to go off a low dose of Cipro and can’t seem to shake it without symptoms returning. [ more ]
Scott F It’s still very expensive. It’s not very effective at treating an active case of pouchitis, so the benefit (if you experience it) would be fewer/milder episodes of pouchitis in the future. So it takes a long time to have any confidence that it’s helping. [ more ]
Paul Alba Thank you for all suggestions. Question about VSL#3. I tried it a few years ago for a short period. I stopped because it was super expensive and I didn’t see any changes (but I only took for a short period). Has the price became more reasonable or is it still very expensive? Also, how long did you take it before you noticed improvement? [ more ]
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J-Pouch ForumsGeneral Discussion
N
B BlueFlame
BlueFlame N [ more ]
Winterberry Try to eat protein at every meal. Protein helps heal injured tissues. Fish, beef, chicken, eggs, tofu, peanut butter, almond butter. For easily digestible fiber when I was having issues, I ate lots of wilted (steamed) spinach, grilled or roasted zucchini with olive oil. No raw vegetables and definitely no peels or seeds for now, if you can avoid it. [ more ]
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J-Pouch ForumsGeneral Discussion
Colorectal surgeon for J Pouch in Boston area
J jpouchseeker
oml703 ❤️
Caty Doctor Ronald Bleday at Brigham and Women's Hospital is excellent. He is also a fistula repair specialist--has repaired many. Caty [ more ]
rickyb14 Hello! Last year, I had surgery with Dr Francone at Newton-Wellesley to revise my 20 year old j-pouch, due to some stricturing issues. I met with a few others in the area before deciding. My original surgeon is now retired (Dr Becker). I know Dr Francone does j-pouches regularly. I had a great experience with him, and at the hospital in general. Feel free to send me a PM if you'd like to chat more. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Employer wants my GI to tell him I am not prone to Disease from fish
M MetsFan
PouchLogic I wouldn't take it negatively. Your employer is trying to look after you and the rest of the employees by addressing the concern they have. If your employer was not concerned that would be worse. [ more ]
Scott F Well, it’s an ignorant request, but perhaps you can just ask your GI to write an “okay to return to work in aquaculture” letter. Zoonotic diseases are real, and there are a few well-known aquatic ones. Your risk is probably the same as that of your coworkers, though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
If you were me, what would you do? Keep the stoma, reverse it (ileorectal -- no colon), or just lose your mind thinking about it? :(
R readann
readann Thank you both for your replies. I really trust and love my surgeon and think he has my best interest. I also know he works closely with two of his colleagues and wouldn't hesitate to refer me elsewhere for additional help. So, with all that in mind, I don't think I need another opinion. Hopefully someone might pipe in with IRA and can suggest something. I really am on the fence because I might be much worse if I get it done and then that is it. [ more ]
cbear Didn’t want to read and run. Can’t begin to imagine how you have felt throughout all of this! You must be so beaten down already from all of your set backs. I wish I could give more advice, don’t give up, you’re clearly a strong person. Best wishes xx [ more ]
UCDoc Hey Readann, sorry to hear of all the troubles the stoma has been giving you. Have you gotten another opinion to see if the other doctor says anything different. Since you've had all these issues a new set of eyes on the case may help before you go ahead with any surgery. I know a good few doctors also have protocols to strengthen pelvic floor muscles... [ more ]
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J-Pouch ForumsGeneral Discussion
How much fluids did your doctor recommend to prevent dehydration?
FAPqueenFAPqueen
grandmaof1 dancing girl. what nunn tablets are your favorite? I was able to get some at our Krogers on clearance. I drink Smart Water but I get the unbranded water. I have used that since the beginning of 2012 after my very first surgery. You will always be slightly dehydrated from here on out. I take my Yeti with water everywhere. And always take extra water where ever I go. Good Luck it does get easier. I was just like you. They finally sent me home with a pic line in order to get the fluids I... [ more ]
Kangaroo I drank 3L - 2 of water and 1 of Gatorade. [ more ]
Dancing Girl Hi, I know I gave two other suggestions before, but here's my general take on hydration/dehydration (I have had a j pouch for a little over 15 years.) I am CONSTANTLY drinking. CONSTANTLY. If I don't, I have big problems, including having to go to the ER and get fluids. And who wants to do that? I have a soda stream machine. I DO NOT BUY the soda add on part.. but I love bubbly water. I have a brita filter. I buy small cans of tomato juice and v8 Juice. Once in a while I will have ginger... [ more ]
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J-Pouch ForumsGeneral Discussion
Are We Immuno-Compromised
T tulsamom
grandmaof1 Well when I have a cold or sinus issues including a cough it doesn’t settle well with my jpouch. All that drains right down my throat and starts all my problems. We all are slightly dehydrated. So I am concerned. I’m just making sure that I’m aware of my surroundings. [ more ]
tulsamom I think I heard something like that, as well. And that's why I've always thought I had to be extra careful. So we think they meant more susceptible to catching stomach bugs? Personally, if I hear of someone having one of those, I run for the hills! [ more ]
maddie18 When I was operated on 1986 I was told not to travel to 'dirty' countries because I am more susceptible to catching things now that my colon was removed. And that is all I was ever told. And back then I was so young I never thought to ask any questions about that but now I know what the surgeon was referring to. [ more ]
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J-Pouch ForumsGeneral Discussion
Still Struggling
BE Brad Epps
Scott F The biopsies rarely show anything interesting. This is probably just pouchitis, and 10-14 days of Cipro or Flagyl is likely to fix you right up. [ more ]
Brad Epps Update: I met with my gastro doc, and had a flex sig scope done of my pouch. We found some ulcers within the pouch. Not sure what the cause is or what yet treatment needs to be. Should get biopsy results back soon and will go from there. [ more ]
Brad Epps Thank you Frencesca. I will do my best to stay positive and follow some of your advice. I am looking forward to my appointment with my gastro doc. Brad [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal Pain - Possibly from Adhesions
S SJAN810
SJAN810 ANDRINA, Sorry to hear you are having trouble too! Are you in the hospital for the blockage? What has your doctor recommended that you to do to treat it & avoid it in the future? I was on biologics for ulcerative colitis before my jpouch surgeries but now every test that's been done has come back normal...no obstruction, no inflammation, etc., so there hasn't really been a reason to try them again. I do take probiotics. It's hard to know whether they're doing anything for me or not. Have... [ more ]
Andreita I had my reversal done in May 19 and I'm currently suffering from inflammation and an acute blockage. I'm not sure what I will do next but I hope you find a solution soon. Have you been on biologicals and probiotics? Sorry if I missed it if you mentioned it already. [ more ]
SJAN810 It’s been almost 2 years since I started this thread and I’m pretty much in the same place I was when I started. On 2/26 I had a rough night…severe abdominal pain, a panic attack which caused me to pass out and end up on the floor twice. Last night (3/7) I had severe abdominal pain again. I’ve had the same lower right side pain for almost 2 years. Usually it is mild to moderate but every few months it becomes severe, 10/10 level pain, which only gets better after a BM (I often have to use... [ more ]
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J-Pouch ForumsGeneral Discussion
Gastroparesis
T TAJ
Bubba1028 I have a j pouch but not gastroparesis. But...my mom has gastroparesis and has had a pace maker put into her stomach to help empty her stomach. It’s helped her tremendously. I don’t know too much about the disease but like I said, the pace maker helps stimulate her stomach to empty it. She’s one of a handful in our state that have had it done and it’s been successful. Something for you to consider? I have no idea how it interact with your pouch or if it causes issues with it, etc. [ more ]
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J-Pouch ForumsGeneral Discussion
Prune juice tip
SpookySpooky
Andreita ❤️
Dancing Girl Here's another tip about prune juice that I learned during one of my hospital stays... HEAT IT UP in the microwave!! And yeah, just use a little!! But it was so soothing heated up!!! Also, I have often seen it in little cans.. in a "six pack". But glad you figured out that you can freeze it. But look around folks... because canned juice can sit on a shelf for a long time and that way you have it in an emergency!! [ more ]
winter wish diet coke [ more ]
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J-Pouch ForumsGeneral Discussion
Day 9 trying to find balance
K Kmiller
Kmiller Thank you! I got some avacodo, sweet potatoes, etc to add in here and there. Ate fish with rice and cooked carrots today. I didnt take any immodium this morning and was pretty stopped up til around 4, so I think I'm going to try a little metamucil in the mornings along with upping liquids. This evening I've seemed to loosen up. I know it's a balance I need to trial and error with. [ more ]
Winterberry Egg noodles okay. I was worried you meant packaged instant ramen noodles, which are made of enriched wheat flour (the natural wheat was removed during processing and stuff added to "enrich" it back to edible) and mostly chemicals as preservatives. Maybe later on, but not so good for a young pouch, can cause messy BMs, and there is almost no nutritional value. After my surgery, I ate pastas of all sorts and shapes made from a few ingredients: semolina flour, salt, egg, water. And lots of... [ more ]
Kmiller Egg noodles with turkey and broth. I'm drinking 16 oz bottles of water and propel, about 5 per day. Yesterday was actually a little better but still pretty thick. I'm going to try to add a few new things, like mashed cauliflower , avacado, maybe pears. I did some mashed carrots yesterday too. [ more ]
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J-Pouch ForumsPouchitis
Might have a bout? Not sire
Cinder23Cinder23
Cinder23 Thanks Scott. My diet hasn’t really changed. Still pretty simple. Eggs or oatmeal for breakfast. Something lift for lunch and rice and a protein for dinner. Usually chicken or turkey. The blood isn’t a big concern only happened once so far. The most problematic symptoms I’m having are frequency, urgency and i would say the abdominal pains. I woke up last night sweating and just felt like I was going to puke but didn’t. Was up from 1-6 am [ more ]
Scott F It’s possible, but first consider whether your diet has changed significantly. That sometimes happens when people gain confidence, and stop limiting their intake of potentially challenging foods. For me the key pouchitis symptoms are urgency, frequency, and leakage. Gas mostly forms well before stool gets to the pouch. Blood isn’t a particularly common pouchitis symptom, though it can happen. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgeon recommendation in Boston
F fapnewbie
Ryan Berio Dr poylin is no longer at beth isreal. He went to Chicago. Dr angelos messaris did my jpouch and i can tell you i highly recommend him. He is the head of GI surgery at beth isreal in boston. My surgery was supposed to be 3 steps but it ended up having to be done in 2. I had colectomy then 5 months later had jpouch creation and was supposed to have temporary ileostomy but the surgeon said while inside they found my pelvis do be to narrow so it was done in 2 steps which resulted in me having... [ more ]
jpouchseeker Did you ever find a suitable surgeon? There's a few recent threads looking for Boston recommendations ( https://www.j-pouch.org/topic/...cializes-in-jpouches , https://www.j-pouch.org/topic/...pouch-in-boston-area ), but no answers yet. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch and removal of Gall Bladder
Pilot DebbyPilot Debby
Pouchomarx Yeah my GI at Cleveland Clinic stated it can cause more digestive issues when removed, not to mention its not a simple surgery for me as ive had about 10 in total so lots of scar tissue [ more ]
Pilot Debby Thank you everyone....sort of scares me because I have heard from several people who had their j-pouch removed first and then their gall bladder after that is when they run into problems. What will happen will happen I suspect...if I can go through all these surgeries for my j-pouch and recover and have it since 1994 I can tackle anything! Thanks for all your information. [ more ]
Pouchomarx I have gallbladder full of stones, MRI shows my common bile duct to be 9mm dilated. My GI said it could be a stone in the bile duct that the MRI didn't see, said an ultrasound in 6 months will get better idea. Of course I start googling and think I have PSC now. But GI said my liver enzymes are perfect and MRI doesn't make her suspect PSC. But if a stone isn't in the common bile duct then what could be causing that issue?? [ more ]
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J-Pouch ForumsGeneral Discussion
Corona Hysteria
F Fredrik
Jan Dollar Personally, I am cautious, but by no means panicked. I have multiple enhanced risk factors outside of the chronic disease of IBD (autoimmune disease in general is a risk factor). I am nearly 65, diabetic, and immune suppressed (on biologics and Imuran). I do not wear a mask, but I have been more mindful about frequent hand washing and using hand sanitizer after touching public doors, hand rails, gas pumps, etc. I also am mindful about not touching my face before washing. I take a wide berth... [ more ]
Scott F There have certainly been plenty of overreactions. Nevertheless, we don’t really know how many were/are infected in Wuhan, and we *really* don’t know how many are infected in the US. That’s because we only identify cases after testing, and there’s good evidence that lots of cases aren’t getting tested, particularly in the US. So we are underestimating the number of cases, but conversely may be overestimating the case fatality rate. The most believable estimate I’ve seen suggests that this... [ more ]
Fredrik Also, Scott. After rereading one of your replies I must comment on the part about trying to wish this away. What I'm seeing is hysteria when considering the statistics. Taking China, for instance, the total amount of infection cases seem staggering because big numbers are scary. If you regard it in proportion to the total amount of the Wuhan's, let alone China's, population a small minority of people were affected before the spread started to peter out. The Hysteria on the other hand has... [ more ]
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J-Pouch ForumsOstomy & Skin
High B12
n/an/a
n/a No doc ever prescribed supplements - they have never shown an interest in vitamins/supplementation. However, my PCP just recommended I increase my Vit. D to 5000 IU/day. He didn't think the elevated B12 would be a problem, since apparently the body gets rid of excess B12, which I don't understand - if my blood levels show a high level, apparently I'm not getting rid of the excess? I feel a little uneasy about the elevated B12, and am hoping it's just an anomaly for some of us who are missing... [ more ]
Bubba1028 Interesting, usually people have low B12. You say you’re on supplements- did the doc suggest that previously? Was it low before? Sorry I don’t have any insight. I’m curious what others have to say, though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Physical Therapy
BA Bill A
Scott F Bill, this seems ...unusual. Perhaps he could point to a scientific study demonstrating the value of physical therapy in your circumstances? In any case, stopping a treatment that is working, even if not perfectly, ought to be thought through pretty carefully. [ more ]
Bill A Yes , he suggested it may be helpful as opposed to the infusion of Entyvio which has been somewhat helpful. I would be grateful if anyone has thoughts about this suggestion. Thanks to all who reply [ more ]
Doug K Hi Bill - I have heard physical therapy or exercise in general is good for overall health - and maybe can help symptoms a bit, mostly pelvic floor problems - but is the GI indicating that physical therapy will replace your biological medicine? I have never had a doctor recommendation something like that. Doug [ more ]
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J-Pouch ForumsPouchitis
Pouchitis with Possible Crohn's Diagnosis
B brmcguire
brmcguire I appreciate everyone's comments on this thread. My intent with my original post was to gain some insights (and even possibly some guidance) from others in this community who have been down this path I'm staring down before me. None of this is easy, but this community is very helpful. This is the first time I've asked a question, but I've read many other threads and have always felt this community has been able to support the people involved. My goal is to be able to become armed with... [ more ]
Jan Dollar Apologies to the original poster for hijacking this thread. I am tempted to delete this whole side discussion. But, from time to time I guess we need to step back and remember why we are all here. That reason is to support each other. We cannot assume that someone has a cruel intent because he is working from a different set of facts. We all bring our baggage with us. We also cannot assume that we know what someone else is dealing with based on a few paragraphs. It is fine to say you... [ more ]
Mcalen ❤️
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J-Pouch ForumsHelp! Need advice now!
Surgeon recommendations in Denver CO- Fistula
G Greenie
Greenie Thank you. I really appreciate the feedback. [ more ]
Boxermama Dr Vogel at UC Health did my colectomy and j pouch surgeries, he is amazing. Lots of experience and very knowledgeable. He also works with Dr Birnbaum, she is supposedly amazing too although I’ve never worked with her personally. [ more ]
Jess623 No Sorry I haven’t heard anything about either of those two Dr.s [ more ]
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J-Pouch ForumsGeneral Discussion
Gas in my “pouch!”
B Burd
Burd Hi Ellie, Thank you for your response! I do not drink wine when doing wine tasting ( my boss would lose his license.) But I am sure I am swallowing a ton of air! I will look up the name for swallowing air. I only work one day a week ... but oh my gosh!! Gas X does nothing for me. Wondering if I should take a double dose? Please take good care! Burd [ more ]
Burd Re: Gas in my “pouch!” [ more ]
Ellie85 Is it really only extremely bad on days that you do wine tasting? If so, do you drink any of the wine? Wine can bother my pouch. Also have you searched online about swallowing air when you talk? I did a quick search and i don't know if it applies to you but it actually has a name. Aerophagia. It can happen if you are very nervous or if you don't breath correctly when you are talking. I would read up on it and think about what you read next time you are at work and see if notice anything. In... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Peas and beans
MIKEEYMIKEEY
MIKEEY Thank you so much for all this wonderful advise Winterberry, it really was so nice of you to take so much time to give me all this information, it is so appreciated. Michael [ more ]
Winterberry Mikeey, I eat peas and beans without problems. The peas are the frozen kind so they are already cooked and frozen, I just reheat 1 or 2 minute in the microwave with 2 tablespoons of water. The beans are canned British Style Baked Beans, or any canned beans in sauce. You can always lightly rinse the beans if the sauce is too much. I find that canned beans are easier to digest because they are pre-cooked (and give me poops like a healthy colon). If you make a bean dish from raw hard beans that... [ more ]
MIKEEY Thank you very much Bobish [ more ]
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J-Pouch ForumsGeneral Discussion
9mm dilation of common bile duct ??
PouchomarxPouchomarx
Pouchomarx so how would that ERCP procedure make my common bile duct dilation resolve? im confused, also I am with Cleveland Clinic who is 10 minutes from me so not going to travel out of state for something they could do [ more ]
Bruce D An ERCP procedure should resolve any issues. My suggestion would be Indiana University Gastro for gold standard service. [ more ]
Still Standing I wish I knew the answer to your question, but I don't. To be honest, I'm with you and wish the doctor would order a test to figure it out, but I'm not sure they can or will. I've had a lot CT scans, ultra-sounds, and MRI's on my liver to monitor the PSC, but I've never personally faced what you're experiencing. I hope you are able to get the answers you seek. [ more ]
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J-Pouch ForumsGeneral Discussion
Child with j-pouch
C chal
Ellie85 I would tell them that he is still at the beginning. It can take 4-6 months to really recover from a major surgery. 6-8 weeks is the time to go back to doing some school or work not to being "normal". In the meantime, he can't get better if he isn't eating or walking, assuming he can walk. I hated that year of my life - imagine the SUPER low cut pants and short shirts of the early 2000s.... I missed 6 months of middle school, a year of high school, and ended up saying fuck it and getting my... [ more ]
chal Thanks Ellie. Good to know that FAP patients have better long term results. I had UC too so my experience is different from his in that regard. And yes, social workers are trying to help too. Just not sure how much it’s helping at this time. [ more ]
Ellie85 Oh that sound horrible. I had my j-pouch at 14 too. I have UC though and lost my colon due to a perforation. I didn't have any immediate complications and did pretty well with the actual pouch. I had a 3-step because of the perforation and the recovery wasn't fun but it wasn't nearly that bad - it took over a year from start to finish though. I also had leaking issues with my second ileostomy. I did have trouble later on with adhesions and a fistula but I have IBD and the perforation. People... [ more ]
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J-Pouch ForumsGeneral Discussion
Catheter for Pouch Emptying
E Ellie85
Ellie85 Ugh finally got the info. For those that also need these things the current recommendation is a Marlen Straight Ostomy Catheter 30Fr 15 inch medium. I wasn't able to find it locally and I live in a big city (DC). I sucked it up and spent 40.00 on shipping. I also gave in and took prednisone because I couldn't take it anymore and even with 40.00 shipping its going to be 2-3 days. Also I wasn't sure I could insert it anyway with the inflammation getting that bad. WTF pouch... Bright side is... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch removal date and time set
n/an/a
n/a Hi Lori, good luck with your surgery. I think if you go through a lot of the posts here of folks who've had the removal surgery, you'll find that there are very few (if any?) regrets. I've been doing quite well, back to doing everything I did before. I'm still pretty careful with what I eat, and chew very well, but have not had any obstructions since removal - yay and knock-on-wood. We're all here for you to answer any questions and give you our support. TE, I'm so glad to hear you're... [ more ]
TE Marie Lorib, I know what you mean about facebook. Whatever you decide please ask you surgeon if s/he will work on your ahesions while operating. My surgeon has spend more time dealing with my scarring/adhesions during surgeries than the main surgical goal. She's operated on me 3 times and each time I end up feeling better. At one time I was taking 4 10mg hydrocodone pills daily. I was able to taper down so that I no longer need them at all. Obstructions are hell! Let us know if you have any... [ more ]
LoriB Hi N/a, thanks for the referral to this site. I’ve been a member of jpouch.org but I just never thought of searching removal. I’m 65 and I’m forming a lot of scar tissue which has caused blockages for me. I have scar tissue at the rectal area too which makes emptying my j pouch difficult sometimes. All in all, I’m actually feeling fairly good since being on Entivio but I still have some ulcers in the pouch. That’s what makes this decision very difficult. It isn’t difficult in the middle of... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hysterectomy
AimeeAnneAimeeAnne
TE Marie I had my hysterectomy before my j-pouch surgeries. I have read in here about involvement with j-pouches. In one particular they had to remove her uterus as it was attached or wrapped around her j-pouch. They knew this before going in. If I were you I woukd at least call Cleveland. The practice of having a colorectal surgeon in during the hysterectomy is common. I know it is a pain having surgery away from home as I live around 4 hours from Mayo but feel better getting my surgeries there. [ more ]
AimeeAnne Wow, you’ve really been through it. What a champ you are. I am sorry to hear that cancer has made a return. Having seen a friend, a nephew, and my father in law, face it in the course of the last few years, I’m keenly aware of just how wicked it can be. I will be thinking of you and sending prayers your way. One of my main concerns, aside from the big obvious one, in facing cancer is the the notion of what a nightmare it would be for my pouch. Reading that the hysterectomy itself went well... [ more ]
CJB Hi Aimee, short story: have had my j-pouch since 1996. I’m 55 now. In May of 2106 though, I was diagnosed with ovarian cancer and had a complete hysterectomy in August 2016. I’ve also had a lot of chemotherapy. I had my hysterectomy by robotic surgery. The good news is that everything went really well and my j-pouch has never been happier. My colo-rectal surgeon was there in case she was needed for any complications, but there weren’t any. My j-pouch had a really hard time with the chemo... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constant Toileting - what are we missing?
J JPouchMom
duck11 Nah when you get sick ((for me anyway) you are just like everyone else. A cold/flu stay in your lungs/sinuses, etc. and the pouch continues to works fine. The only exception is a GI bug as we tend to get dehydrated and have electrolyte issues more than people with colons. Sometimes when those are out of whack you can feel pretty miserable. I would be remiss to point her problems on constantly fighting something-it seems an awfully long time to just be bouncing between viruses. I take... [ more ]
Scott F I appreciate how important the philosophy of various diets can be. I nevertheless think it’s an error to have such strong opinions about it that serious medical issues are treated as less important. You can live that way, but it seems like unnecessary suffering to me. Some J-pouchers do fine on a vegetarian diet, but plenty can’t tolerate it (and vegetarian diets can vary enormously). Your post title says “what are we missing?” Dietary flexibility may turn out to be an important answer to... [ more ]
JPouchMom Thank you everyone. I appreciate your kind words and support! xo Great ideas and suggestions. we are going to try the "lactose-limited" diet. It's interesting to hear the problems people have encountered with lactose since getting a pouch. Although the Visbiome states it has very little dairy - basically just made with the 'culture', we have stopped it to see if it makes a difference. Since she only recently started eating the cookies, and hasn't had very many, we will continue with them. As... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What to eat!?
K Kh1988
Winterberry Rocco, have you tried vegan yoghurt? People who are vegans do not dairy, meat, or animal products, not even animal-by products. Yoghurt for vegans is made by a company called Silk, or Stoneyfield, among others. Google it and you'll see many choices for vegan yoghurt. [ more ]
Rocco C 1993 and 1994. Had a major bowl obstruction in 1999 and surgeon had to remove 32 inches of small bowel due to gangrene. [ more ]
Kh1988 Yes that is it!!! Sometimes it may be 5/6 but usually it’s around 3-4. I actually struggle with thick output and I have to drink lots of water to make sure I go or I get almost constipated Lol. How far out from surgery are you? [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic Ohio
A AFvet
n/a My pouch was done in '93, and I eventually developed fistulas/abscesses. Dr. Shen finally sent me to Dr. Hull, who placed setons. After too many abscesses and other problems, we both agreed the pouch needed to come out. She disconnected it first while things healed, and then removed it a year later. The surgical process went so much better than I anticipated - in fact, I haven't been back to see her (or any other surgeon/GI doc) since then. Her entire team was great. [ more ]
AFvet Thank you all so much! Did Dr Hull do your j-pouch and if so were the results good? [ more ]
n/a I had Tracy Hull as my CRS in Cleveland. VERY highly recommend her. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis
E Eagler123
Scott F If the Cipro isn’t giving you adequate relief there are other antibiotics to try: rifaximin, Augmentin, Tindamax, and maybe a couple of others. When one antibiotic doesn’t do the trick, sometimes a combination will work, and that may be at a low enough dose to avoid side effects. So, for example, you might be able to add a low dose of Flagyl that you can tolerate just fine. If you can’t find an antibiotic or a combination that does the trick, the next step would probably be one of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Take down complete
K Kmiller
Kmiller Surgeon told me to wait 5 days until metamucil. I am so nauseous this morning and no appetite. [ more ]
Kangaroo Congrats! Heating pads are good for gas pains. I had pain in my shoulders, and was told that was gas pain. The heating pad helped tremendously. [ more ]
Scott F I started psyllium fiber right away, on my surgeon’s advice, and I think it was helpful. Some surgeons don’t like that approach, though. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Going to bathroom way too many times plus advise regarding if I should have surgery
RC Rocco C
Winterberry Hi, Rocco. I'm sorry you've been having problems for such a long time. Regarding the position you need to be in to allow gas to come out, have you heard of a squatty potty? If not, Google "squatty potty" on the internet and consider if this position might help you. You can also just use a small step-stool (from the Dollar Store?) if you just want to try it before spending more than a few dollars for a trial run. [ more ]
Scott F Rocco, these posts are public. You are free to share them in whatever way works for you. [ more ]
Rocco C Good Morning Scott, Is it OK if I ask Jan Dollar to look at these posts. She might have more info. Thank you. Rocco [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Interesting research
Paul HPaul H
Francesca Thankyou for your posting Paul H. I read the article from the Guardian and have tagged it to speak to my gastroenterologist about it. Very interesting. I had UC for 25 years before surgery so anything they can discovered regarding this illness is a plus. 👍. Francesca 🌷 [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Best Protein powder that is jpouch friendly ?
PouchomarxPouchomarx
Still Standing I just started using Total Activation Whey Isolate Protein. I ordered if from Amazon after reading through too many whey protein types. I picked it because it is lactose free and has stevia instead of sugar. i chose vanilla so it I could mix it with other things in a smoothie. So far, I've not had any problems with it. By the way I also put collagen peptides in my morning coffee. Before this I used Pristine Protein by Trim Healthy Mama. I've also used Sunwarror's plant based protein. I... [ more ]
girlunky Vitamin Shoppe has a powdered peanut protein that is delicious. Of course you could also just make smoothies and add smooth nut butter. [ more ]
Cinder23 Anyone have any insight into this? I know whey protein is hard to break down in the first place and can cause some problems for pouchers. I’m 3 months post takedown and need to up my protein intake significantly and I’m not looking to eat a ton to do it. Anyone find a suitable protein powder for pouchers? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Gastrograffin prep
J Jfill21
Jfill21 Thanks Debbie, please post what Dr Shen says in April. [ more ]
scallop Hi -- I've also had abnormal manometry findings and have done a fair amount of pelvic floor PT at home. Going to see Dr. Shen in NY in April and may return to do biofeedback and PT with their therapists who likely know more than the therapists here. It's really a drag -- sounds like our problems are fairly similar. I hope you find a solution. Best, Debbie [ more ]
Jfill21 I’m good. I have too much invested to give up now. [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Stelara and Methotrexate treatment for pouchitis
M MDS
MDS I take 12.5 mg every Friday. A low dose. I get my labs done every 3 months. My last lab I had my best results in 6 years. [ more ]
CTBarrister Remicade and Methotrexate worked for me, although I was gradually weaned off Methotrexate because it elevated my liver chemistries after being on it for a while. What’s your weekly dosage of Methotrexate? Are you keeping an eye on your blood labs? [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
I CAN NOT PEE!
FAPqueenFAPqueen
BillV Many years ago, I was thrown off by my horse and suffered a double spinal fracture (fortunately with no nerve damage). I was kept in a hospital bed for a number of days and was unable to urinate. None of the techniques the nurses tried to make me “go” worked and they had a catheter ready for use. Then a PT came with a corset so that they could get me up walking. After she put the corset on, I felt an urge to urinate and was successful. I strongly suggest that you discuss using a corset with... [ more ]
Kangaroo Flomax is a pill that helps relax the bladder, thus making it easier to pee. It's usually only given to men, but I'm female and it worked well. [ more ]
FAPqueen What is flomax?? [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Incisional Hernia
RC Rocco C
Rocco C one last point. Because I lost so much of small bowel, first from surgery, secondly from obstruction, I normally have 10 to 12 bowel movements in a 24 hour period. Last year I had to purchase discreet seat (toilet seat covers). I started using them on January 1st. By the middle of December, I went through a 1,000 sheets and that is what I just use at home. It does not count going to the bathroom at work or anyplace else. I am on Lomotil and take 2 tablets 2 x a day. Sometimes I have to take... [ more ]
Rocco C The obstruction of 32 inches of small bowel removed was gangrene. [ more ]
See all 2 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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