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J-Pouch ForumsGeneral Discussion
Does bacterial overgrowth effect your taste buds?
skn69skn69
Maria410 I know this is a super old post but this EXACTLY explains what I’ve been feeling! Yeasty, foamy watery stools, gas, bloating and the tacky film feeling in my mouth. If anyone sees this and has any answers please let me know! I've been put on antibiotics a few times for it and it eases for a few days then is back again. thanks in advance xx [ more ]
Maria410 ❤️
skn69 I haven't thought about thrush in years...I used to get it as a kid, as you said, after a run of antibiotics...it is similar to what I feel...like there is a permanent coating on my tounge and I have a cheesy taste in my mouth (haven't eaten cheese in days or more) doesn't matter what I eat, I have the taste or smell both in my mouth and in my pouch output. Food tastes like, as you say, cardboard. That is why I thought about bacterial overgrowth. Not sure if thrush is systemic or just in the... [ more ]
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J-Pouch ForumsGeneral Discussion
Doubt about takedown
sofisofi
Scott F The loop ileostomy exits from somewhere in the middle of the small intestine. The output isn’t as well digested and processed as the output from the end of the small intestine, which has gotten the “full treatment.” [ more ]
Former Member I believe it can’t absorb water well for a while because it is swollen because of being manipulated around in the surgery. It takes 6-8 weeks for it to calm down. [ more ]
sofi @Kmiller ugh yes the loop is so annoying that seems to be a consistent thing between all of us! good i'll keep my hopes up, this will get better when I have takedown it will be less watery. [ more ]
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J-Pouch ForumsGeneral Discussion
My suggestions for those facing j-pouch surgery
D Daleer
Former Member All are perfect! Mine is to remain HYDRATED!!!!! At least a gallon a day! WATER IS MY BEST FRIEND! [ more ]
Scott F This is a good list, Daleer. I’d offer a couple of additions as friendly amendments. 9. In the early days apply a barrier cream after every bowel movement. This can be simple, plain zinc oxide or Calmoseptine, Desitin, or Ferguson Formula. Most J-pouchers can eventually abandon this, but it helps prevent a very common kind of butt burn in the early days, and when frequency is high. 10. Consider trying soluble fiber, like psyllium powder. This will add bulk to the stool, which is more... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium or Lomotil
RondaCRondaC
Still Standing I've used both, but Lomotil seems to work better for me. My insurance covers it also. [ more ]
Scott F Lomotil works better for me, but everyone is different. With my insurance coverage Lomotil is cheaper, too. [ more ]
Daleer Imodium works well for me but the main reason I use it is because it doesn't need a prescription and is easier to get. Also they sell it at the dollar tree :-). [ more ]
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J-Pouch ForumsGeneral Discussion
HELLO MY BROTHERS AND SISTERS! I AM A J-POUCHER TOO! :)
FM Former Member
girlunky I also have a lot of bm's but rarely take immodium, lomotil or fiber. I have trouble emptying when the output is thick, and end up spending more time in the bathroom. Fortunately I am 99+% continent. The only accidents have been a few misguided releases of gas. If I have to go a long time without access to a bathroom I resort to fasting/very low volume food (like a protein bar). [ more ]
lclassen My GI just added imodium at dinner time for me. Only been a day or two, so I haven't seen any difference yet. [ more ]
PouchLogic I don't take Imodium either, when I tried I got very backed up and felt terrible. [ more ]
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J-Pouch ForumsGeneral Discussion
Pizza
J Jaydog
CTBarrister I live in the New Haven area where some of the best pizza in the world is made "New Haven style." https://en.wikipedia.org/wiki/New_Haven-style_pizza There in New Haven exists the "Holy Trinity" of pizza- Pepe's, Sally's and Modern, all of which have been in business since at least 1930, and all of which regularly finish in the top 10 in national pizza competitions. The only problem I have ever had with pizza was in 1992, about 30 days after takedown, when I ordered a pepperoni and anchovy... [ more ]
CTB23 I eat pizza once in a while, with spinach and garlic. We don’t eat it often due to my husband’s low sodium diet. I have no problem with it. [ more ]
Former Member Definitely! I have had my J-pouch for almost 6 years now, I LOVE PIZZA CONGRATULATIONS ON YOUR UPCOMING SURGERY <3 [ more ]
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J-Pouch ForumsHelp! Need advice now!
POUCHITIS
A AL99
Johnny J-pouch Thanks for the reply; just finishing up my Cipro today; all seems to be back in order. Had a quick check-up with the Dr last week, all looked good, coincidentally I was due for my annual checkup anyway. [ more ]
kta Antibiotic rotation works for me, Xifaxan, Augmentin and Cipro. Two week rotation. For maintenance, I take one a day. When pouchitis starts flaring, I go up to two a day. I was put on Humira about a year ago as well. It worked wonders until recently. I hope you find what works. We've go to keep these butts in line. [ more ]
Johnny J-pouch Hello, Had my J-Pouch surgeries in 2014 and had been on a similar forum for UC years prior to my surgery. Just joined this site yesterday. I’m 51 years old and for the most part have been managing well with pouch life for the last 6 years. However, I think I’m now experiencing Pouchitis and chocked up prior symptoms of it to just some poor food intake on occasion. This difference that drew me to seek some input from my Dr was the excruciating pain while having a BM and major increase in BM... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Drugs
H Hazel
kta In my opinion, the opiate restrictions have gotten out of hand. I currently take tincture of opium and it works wonders. Gentle. Immodium constipated me. My new gastro will not prescribe opium and my family doc, who has been doing it after my old gastro retired, is now retiring. I have a consult with the new gastro Monday and will ask about alternatives. I really like her, but if we cannot find something that agrees with my body, I will need to find someone who will. I hope morphine works... [ more ]
Hazel Thank you! For some reason she is hesitant on ordering that. She's switched me to morphine... [ more ]
Doug K Yes - one does not need much - like 1/2 of an ML - I take a fraction of the normal dose. It tastes absolutely horrible. But it’s no big deal. [ more ]
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J-Pouch ForumsGeneral Discussion
Removal of Jpouch, permanent ileostomy
D DavesGirl
Kathy K BillV- Thank you so much for your prompt response and for directing me to some resources. I feel better knowing we can still gain valuable information before any decisions are made. I appreciate you sharing. Kathy [ more ]
BillV J pouches don’t work out for everyone, but there are options available other than a conventional ileostomy. The two options that do not require having an external bag are the BCIR and the K pouch. These two options, which function in the same way, have an internal pouch and valve constructed out of a short piece of the small intestine and a button hole size stoma located low on the abdomen. The pouch is drained with a small plastic catheter 3-5 times a day at the person’s convenience. There... [ more ]
Kathy K Hello All, My son who is 21, wants to have his j pouch removed. His initial diagnosis was at 19 and he's spent 16 weeks in the hospital so far with almost every possible complication imaginable. The pouch failed almost immediately, and he had to have emergency diversion surgery in Feb. It is now June and after 3 additional hospitalizations we think the leak in the pouch has finally been fixed. He doesn't want to try another reversal - it was hell. He believes a permanent ileostomy is right... [ more ]
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J-Pouch ForumsPouchitis
Flagyl
K Kmiller
Anabel M my name is Anabel M, I am a cancer free for 3 years. I still have diarrhea and puchatitis some times. I still have to mantain on a strick diets. No many things; everything that hace much fiber I can not eat- mushrooms, brocolli, carrots, sweat potato, all the spices o small herbes.... nuts also a NO NO... When a get diarrhea I take Banatrol plus with water, and that helps very much. I am also on probiotic from Whole FOODS the one that has billion...on the refrigietor. Please contact me... [ more ]
Kmiller The surgeon put me on cipro yesterday and I feel better. Not 100% by any means but better. I stopped the flagyl as I was having straight liquid stools. Hoping the cipro does the trick. Ive had 3 doses and the liquid frequency is improved. [ more ]
DJJ2019 Many of us need to take two different types of antibiotics. Flagyl works differently than say Cipro, they attack bacteria differently and attack different types of bacteria. I've found that antibiotics start working quickly, even within 12 hours, so if you are two days in and have not seen a change, I'd ask for Cipro too. I prefer Levaquin, but Cipro seems to work for most. [ more ]
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J-Pouch ForumsGeneral Discussion
Going Through it 😪
A AWalkingTestimony
Olina Thanks Bill I am now relaxed! Olina [ more ]
BillL Glad that you’ve got some good referral’s there, Olina. I have not seen any of the doctors at UNC, but they have a great reputation. My youngest did a medical internship there one summer a few years ago, and she was really impressed. I think you have some good options around here! [ more ]
BillL ❤️
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J-Pouch ForumsGeneral Discussion
1 year update
A Alexamsterdam
Alexamsterdam Hey Elif, Thanks you for your response. I think everyone is trying to find the right balance in diet and medicine to live a normal life as possible. I only started using Immodium after about 3 months because I wanted to give my body time to adjust and only used 1 Immo for a long time. B ecause of the loose stools and bb I slowly started to build up. F irst 4 and now 6.1 for breakfast, 2 for lunch, 1 for dinner and 2 for sleeping. I also tried to reduce it again but that didn't go well so... [ more ]
Former Member Hi Congrats on reaching the 1 year milestone! I had my takedown on March 4th, so it has been almost three months now. I never took imodium, lomotil etc, and tried metamucil for a few weeks, but decided to drop it, as I wanted to see how things would be without it. I am wondering why you use so much imodium and psylium fiber? Maybe it could be easier to empty without them? I think you might try having more variety in your diet. I eat a lot of fruits and a lot of well cooked veggies, and I... [ more ]
AWalkingTestimony ❤️
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J-Pouch ForumsGeneral Discussion
Pouch failure
A Almac
BillV Thanks for the compliment, Jen. Best of health, safety and happiness to you! [ more ]
JenJen Just to clarify on some previous comments regarding K-Pouch and/or BCIR surgery: K-pouch surgery does not always require the use of “way more bowel.” Also, the conversion of a j-pouch to a k-pouch can in many cases be performed in one surgery. Each person and case is very different — given disfunction, previous surgeries, other med conditions, etc — and everyone should get their own consultation before eliminating options. Dr. Dietz does not look for excuses to perform surgery and I would... [ more ]
BillV With the retirement of Dr. Rehnke, there is currently only one BCIR center that is located in Los Angeles with Dr. Schiller and Dr. Benyamini. However, the K pouch procedure is very similar to the BCIR and functions exactly the same as the BCIR and have similar success rates. There are a number of surgeons who do K pouches and a list of them can be found on the Quality Life Association’s website (qla-ostomy.com) under the Medical Info tab. In spite of the limited number of surgeons who... [ more ]
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J-Pouch ForumsGeneral Discussion
Desperate! Bentyl (dicyclomine) and Rifaximin (Xifaxan) Low Fiber diet
Z Zig
twinkie Hi Zig, after all you have been through with your doctors, with no relief in sight, esp. from your current ones, maybe seriously consider finding new specialists to help you? (Depending where you live, you could even search this forum for recommended doctors.) I'd be totally frustrated by now. Best wishes to you! [ more ]
Almac Thanks concertboy. I’m glad you found something. My docs don’t seem to want to go further than antibiotics and probiotics. However since my first post, I had a mri done where they injected gel into my pouch, had me bear down like evacuating it. At the very end they wanted me to just basically poop it all out on the mat in the mri so they could monitor it. I couldn’t. No way. Once I stood up, I went to a toilet and could get it out. But I was still painfully working it and the air injected... [ more ]
concertboy I hear you Zig, and have some hope to offer. Had my Pouch put in in 2013 and have had chronic pouchitis ever since. Pain has been excruciating and constant. Sleep has been horrible. Bathroom trips 30+ trips over day. If I even smelled food I would need to run to the bathroom to avoid an accident. I tried pretty much every type of medication. Until a couple of months ago I was on Humira, Amoxi-Clav, Rifaximine, Codeine Contin, Percocet, Wellbutrin, Esomeprazole, and Prednisone all at once and... [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Shen leaving the Cleveland Clinic
draegsdraegs
Strongerlynn I wonder if he is going to continue to do video appointments. I probably could afford that and it would be ideal. If anyone finds out let me know. [ more ]
Pouchomarx Dr Shen is not replaceable when it comes to jpouches. I know his reasons for leaving but I think he was set on going moreso because of his daughter going to school in NYC. But great surgeons left including mine, Dr Remzi and I know his reasons too and Cleveland Clinic should be ashamed of themselves. [ more ]
Fight like a girl Well..I guess there's nothing we can do about Dr Shen leaving CCF. J pouchers keep each other posted about other experiences with other doctors would be helpful. As I said before..I surely do miss him but I also need to be pro active for myself and find the best Dr fit for my medical needs since I can not go to Dr shens location.lets keep each other posted on our experiences with CCF. Best wishes - good health to all. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis - Help - Suggestions
G grandmaof1
Olina The only thing that has worked for me is daily Cipro 250 mg morning and evening. I became very allergic to all UCdrugs..canasa pentassa sulfa salazine etc. [ more ]
Jfill21 Thanks, I appreciate the offer to stay in touch. Stay well! [ more ]
grandmaof1 John, Thank you for replying back. I feel like you do but I am also just tired of it all. I do have good days. I think I might have found a connection with my recent flair up. Sometimes I get sores inside of my nose. Just out of the blue. And sometimes on the gland of my neck will swell. I’m wondering if when I have something in my body go haywire if that is not causing my pouch to have issues also. It’s just a thought. I know it’s all about inflammation. So that was my thought. I am so... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and Covac 19
P Pals
Ian Mackie Thanks for the info friends!! [ more ]
skn69 I had 'something' in March...no fever or cough but an achy body, a killer headache, a knifing pain in my right lung, sore throat, and such bad exhaustion that I would cry when I had to work (video teaching)...it lasted a week and then I was fine then it came back for an encore a month later...for 4 days and again this week...Bad nausea, vomiting, exhaustion, sore throat, aching and a killer headache...my doctor believes that it is the virus but I am wary of going anywhere near a doctor's... [ more ]
bowelsofhell It's possible I had it earlier in the year. My wife's a doctor and saw several patients who'd recently traveled, got sick but tested negative for the flu. Then their symptoms swept through her clinic and she and many of her colleagues had GI issues, hacking coughs, fatigue. Some had fevers, some didn't. This was before C19 was known to be in the US. We've subsequently learned that of course it was already here then. When I got sick, I never had the hacking cough. I had chest pain and... [ more ]
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J-Pouch ForumsGeneral Discussion
Roading biking complication?
B Brooksy
phdwithpouch Great! Keep it up! Yes it's surprising what just a small change can make, earlier this year I randomly decided to remeasure my inseam and adjusted my saddle height down by a cm at most, and it almost completely cured all my lower back and shoulder/neck aches. I think I'm now sat a little more upright so not arching my back and putting as much weight through the arms/shoulders. [ more ]
jpoucher21 It’s going well, I am starting to work up to longer rides and really enjoying it. I haven’t completely resolved the sore on my butt but I find that I can manage it pretty well and am still able to ride. I would love to get the area completely resolved but it doesn’t seem to want to do that right now. A new seat has helped out a lot and I want to start playing with my saddle position a little to see if I can’t relieve even more pressure from that area. I’ve been told that small adjustments to... [ more ]
phdwithpouch How is the cycling going Marc? [ more ]
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J-Pouch ForumsGeneral Discussion
The muscles in my in my bottom no longer work difficult to eliminate stool must force
MIKEEYMIKEEY
MIKEEY Mary O.- Thank you so much. I am going to NYU who also have a program, I am doing it with a pT specialist via skype, just started. [ more ]
Mary O Did you see that there is a new thread about this subject? Some helpful tips were discussed, including an interesting program at the Mayo Clinic. [ more ]
Almac Sorry. Deleted my to start its own post rather than hijack this one. [ more ]
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J-Pouch ForumsGeneral Discussion
Chrohns after jpouch
J Jaci
CTBarrister Colectomy doesn't cure you of the auto immune disorder that causes UC so it's a bit misleading to say the surgery is a cure. And this is something that should be communicated to the patient. Autoimmune disorder manifests as both UC and Crohn's in the bowels. And the course I have had of it manifesting as inflammation in different places isn't unusual. Once you remove the labels you are just talking about inflammation appearing in different places at different times- which isn't necessarily... [ more ]
rustyskyline "In the final analysis it doesn't matter in a large number of cases, because the treatments are basically the same regardless of what you choose to call bowel inflammation caused by autoimmune disorder." Total colectomy is not prescribed for treatment of Crohn's because the disease will eventually manifest somewhere else in the digestive tract. With ulcerative colitis, the only cure is colectomy and that is why the Doctor's diagnosis is critical. If my Dr. had told me he wasn't positive it... [ more ]
CTBarrister Like Still Standing, I am of the opinion that the diagnosis is just a label for bowel inflammation. Surgery isn't designed to cure autoimmune disease, which often manifests after surgery with new inflammation in new areas. So it's tricky to either say or prove that a misdiagnosis occurred. I was originally diagnosed with UC, had surgery, was 15 years later diagnosed with Crohn's in the ileum. The Crohn's that I have is much more controllable and less symptomatic than the UC pre-surgery, so... [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic Floor Therapy
A Almac
StarryNight Unfortunately, I am not local to the Mayo Clinic. There are plenty of B&Bs, hotels, and charitable housing within walking distance. Due to my condition, I needed a private bathroom, so I opted to rent for 1 month a room in a European-style apartment house with a communal kitchen, yet each room had private bathrooms with showers. Most of the residents were visiting students or doctors, or resident or fellow doctors, nurses, etc. I was the only patient at the time. It was 3 blocks from the... [ more ]
Jfill21 I had one session of PF therapy at the Cleveland Clinic where my j-pouch surgery was performed, but home is in Virginia. I had a difficult time finding a local skilled therapist as not many are trained in PFD--at least in my neck of the woods--as most are unfamiliar with a j-pouch (maybe that doesn't matter) and/or working with men (again maybe it doesn't matter). I ended up going to PF therapy at the University of VA for four months. It helped, but my GI once said I may need to go back for... [ more ]
Mary O I've seen a number of therapists for PF therapy. By far, my best results were from p/t's that used Dry Needling as part of their practice. There was one therapist that I thought was a game changer who is in the UK (London). I moved back to the US (Chicago) six months ago and have yet to find someone of her caliber. The program outlined above from the Mayo Clinic sounds fantastic (and exhausting). I may check that myself. [ more ]
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J-Pouch ForumsGeneral Discussion
Hard time finding Loperamide
B Bubba1028
roseviolet Check Ebay for larger quantities of Loperamide at a reasonable cost. Also, vitality Medical sells bottles of 96 for $6.25. [ more ]
Scott F It’s certainly true that psyllium works mechanically rather than biochemically, and thus tends to have very few side effects. OTOH it’s not a substitute for a bowel slower, if a bowel slower is needed. I think some of us probably use more Imodium/Lomotil than is ideal, though, so finding ways to reduce the need is a reasonable strategy. [ more ]
Bubba1028 Yea so doc didn’t want me to take Lomotil for some reason - preferred I transition back to immodium. I wonder does the since Imodium is a drug, it goes through the liver to be processed. Would fiber pills/psyllium be considered more natural since they aren’t “drugs?” and not processed through the liver? I’m wondering if it might make more sense overall to transition to that... [ more ]
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J-Pouch ForumsGeneral Discussion
Nausea
skn69skn69
skn69 Thanks CT, I will ask my pharmacist (they have real ones here who make up their own meds)...I am sure that you are right...I took a tums before dinner but couldn't eat so I will see how it goes...I guess herb tea couldn't hurt... Tomorrow I will see my Dr...and see if I can get some bloodwork done while I am at it...you never know. Sharon [ more ]
CTBarrister One other thing- if bismuth doesn't knock out the nausea, chances are good that bacteria in your gut isn't causing the nausea. In that case I would suspect a med you are taking or something systemic outside of your gut. The bismuth should be toxic to most bad bacteria in your gut. [ more ]
CTBarrister Sharon- all PB is is bismuth salicylate. It's a metal that is toxic to the bacteria in our guts which cause gastritis, upset stomach, nausea and pouchitis. If not sold under the Pepto Bismol brand, it's an utter lock that France sells it under some other name. As an over the counter. In the USA pretty much every pharmacy and supermarket has their own generic brand with the same operative ingredient as PB, bismuth salicylate. It is a distinctive pinkish color, and has a chalky taste although... [ more ]
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J-Pouch ForumsGeneral Discussion
Water or sports drinks?
RondaCRondaC
James B Personally, I do really well with daily electrolytes. I use the Ultima brand, and drink 80 ounces of water daily with about three scoops of the electrolytes in total between my two bottles. I've gone on vacation before and forgotten my electrolytes. After about two days I feel super lethargic and almost like I have the flu. The Ultima is sugar free, but sweetened with stevia. [ more ]
Asa Lay What about sugar free sports drinks for ileostomy? [ more ]
RondaC Thank you for all your replies. I will stick to water. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pescatarian Diet
B BrianBril
skn69 I am not a fan of any one type of diet or anything that restricts your intake of healthy foods. Find what works for you and stick to it...and do not forget to try to introduce new foods or food groups in small quantities over time. Do not avoid any one food group (unless you are allergic to it or have sensitivities) for too long or you may end up with deficiencies. I am prudent...and cautious...and have a full panel of bloodwork done annually to make sure that nothing is missing in my diet. [ more ]
Jaypea I have had my j pouch since 2013 and am pescitarian. I have no difficulties at all. Everyone has their sensitivities which are many and varied. For example, I can’t eat blueberries or citrus fruits. Causes horrific butt burn and are indigestible for me. I love nuts and raw veggies. Pay attention to your own needs and foods that keep your pouch happy. [ more ]
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J-Pouch ForumsGeneral Discussion
Prebiotic vs Probiotic
D DJJ2019
skn69 Both have a certain quantity and different strains of healthy bacteria (flora) that is necessary for our guts...one, the probiotic, is there to replace the good bacteria after a run of antibiotics, the other is supposed to 'prepare' your guts for when you start a run of antibiotics...not being a professional, I suppose that they are different strains in different quantities. Here in France, traditionally, they give you brewer's yeast along with any antibiotic treatment and encourage you to... [ more ]
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J-Pouch ForumsPouchitis
Ulcer
A ABH
Scott F I have to stay on antibiotics all the time, so let’s hope you can get this resolved with something less than that. Other folks here have reported courses of antibiotic treatment around a month long for stubborn cases, but I don’t know how many of those resolve vs. progress to continuous treatment. Good luck. [ more ]
ABH Thank you, I'll look into them. Tomorrow I'm receiving some some probiotics I ordered but not sure how strong they are. For how long have you taken antibiotics for them to work. [ more ]
Scott F It’s possible that the ulcer is just from pouchitis that hasn’t fully resolved. If that’s true then more/longer antibiotics may be needed. You might also try adding a strong probiotic, like Visbiome or VSL #3, though they are expensive. The biopsy will probably not provide much information. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis and lactose intolerance
D DJJ2019
Still Standing I find that if I overdue on high-sugar lactose items, like ice-cream or cheesecake, I'm susceptible to pouchitis. Needless to say, I still take lactose pills when I eat them and try not to overdue very often. I consider them a treat not an everyday splurge. I use unsweetened unflavored almond milk for most of my milk needs. Like those before me, I still get some gas even with lactose pills or lactose free products, yet its much more manageable. (Also I take four lactose tablets whenever I... [ more ]
PouchLogic I also have lactose issues. I am not the best at taking my pills for lactose but I do get lactose free milk. I would not be surprised if there is a larger group with issues with both. I still get gas if I take the pills or not but it seems more manageable. [ more ]
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J-Pouch ForumsGeneral Discussion
How to tell difference between blockage and gas pain
A Andreita
JHendrix Yes, either the chewable ginger lozenges (Gravol) or, my preferred, chewable by Rexall. They seem to work for more than just nausea. [ more ]
Andreita Is it the candy, chewable ginger? I love those. I also take ginger from a tube and eat it by the spoon when I'm nauseous. Better than Zofran. [ more ]
JHendrix I have only had true blocks with the ostomy but I too thought I was experiencing a blockage with the j pouch twice when the gas became horrific and there was no output for hours. Both eventually passed and I think it was indeed gas. My go-to for all intestinal woes these days is chewable ginger which are indicated for nausea but I find they help me a great deal. Sometimes I wonder if it's a bit of a placebo, but really, do I care? There was no question with the ostomy blockages. They would... [ more ]
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J-Pouch ForumsGeneral Discussion
Women who had J-pouch surgery in past 5 years "can we talk?"
Miss Carole BMiss Carole B
Kmiller Emptying the pouch...not quite the same. Agree its a matter of relaxing. Ive struggled with that and tend to spasm some when I'm on the toilet, but like everything else that's better with time. The beginning for me was very frustrating and discouraging but things are so much better now. Still not perfect, but easier to empty. So just hang in there, be patient. This group has been a terrific resource! [ more ]
girlunky My Dr. said it takes a full year to get healed & adapted to the jpouch. Your body changes the way the small intestine works a bit when the colon is gone. But in three months you should be doing most everything. Emptying the jpouch is a bit different than before although you still sit on the toilet. It's more a matter of relaxing the anal muscles to let it out than to actually push. Be patient, it takes a while. I found that going then standing up, bending side to side and front to back ,... [ more ]
Miss Carole B Dear Girlunky - Thank you so much for your story. Happy to hear you stuck it out and have a pretty normal life now. I am taking good notes about all this. I hear you that because of the burning you need to always clean up well with ointment and such. This has been a real help. Best, Carole Dear KMiller - A very realistic story of your ups and downs. I appreciate hearing about progress a day at a time and to measure recovery in weeks and months. I guess I plan to make room for at least 3... [ more ]
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J-Pouch ForumsGeneral Discussion
time between 2nd and 3rd surgery
sofisofi
CTB23 I understand because I had my happen just like yours. I was diagnosed in April and had my first surgery in November that year. Mine came on fast and furious at age 59. My sister had the same situation at about your age. No rhyme or reason, I guess! [ more ]
sofi @Nela @CTB23 @Former Member Thanks for the input. I am aware of the standard time, and i'm sure my dr wont send me into 3rd surgery without making sure its all healed and no leaks etc. On friday when I see him I will ask him more about this time frame, but I have read of people getting 2nd and 3rd surgery in shorter time and I was wondering of members here who did it more back to back successfully. For the record I am not in the US, im in south america. Times seem to be a little faster than... [ more ]
Nela I agree .... that seems too short of a time between surgeries. Maybe if you're healthy it's different but, in my opinion, we've just had the surgery because we're not that healthy! I get not wanting the bag on your belly; however, you want the pouch surgery to have a happy ending with as few issues as possible. I waited six months. It sucked but my doc said it was necessary for my recovery. It is a pretty major surgery that is very taxing on the mind and body. If you're not in the best... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Question about 2nd surgery
G Gogaqt
sofi Hello! Old thread but im going to my surgery #2 this monday. My surgeon says I could be getting the takedown after 4-5 weeks (surgery #3) after surgery #2 if it all goes well, no leaks, infections etc. I really want to do it as fast as possible because I doubt a loop ileostomy will be much fun, and because I want the bag out of my belly. Wondering if anyone had a short time between surgery #2 & #3? [ more ]
GS Hi Daniel I've only just joined this group, so consequently have only just seen these posts! Hopefully, by now, you will be the proud 'owner' of a j pouch? My partner and I are are due to move to Spain within the next few months and my final surgery was carried out on 27th April (in the UK), following a few months of having a stoma. I had ulcerative colitis, which didn't respond to an array of drugs; hence surgery! Initially, my surgeon was going to aim for a two-stage process, but i became... [ more ]
Lesandiego Yep... Most of us agree that we hate / hated the idea of an ileostomy, but truthfully it's not as bad as you would think (except for sexual relationships... that I did not have to deal with). Best part about an ileostomy.... you can fart in your bag and nobody will ever know. Nobody can blame you for the smell in the room and you really can blame the dog! Worst part about an ileostomy: when your bag leaks in public, because you just went to an all you can eat buffet and skipped going to the... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF and meds
S shk2j
shk2j Hi Everyone: I wanted to follow up to my own post in case there are folks in the future looking for information the way that I had searched. I am (Thank God) very happy and grateful to report that I am currently expecting after 2.5 rounds of IVF. So, to answer my own questions: 1. Did you use prednisone during your IVF cycles or during pregnancy? If so—for how long? My RE believes that the studies that led past IVF practices to use prednisone are outdated. However, after my husband and I... [ more ]
lina I don’t have any advice but I’m starting the IVF journey this month. I would love to make some online connections and share support. I hope you got answers to your questions and that all went ok- ivf is stressful, especially these days! [ more ]
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J-Pouch ForumsGeneral Discussion
Severe anal burning
W Willow
Pouchomarx Hi Im in Cleveland and I was with Shen for 12 years. I have had this intense burning but nothing on scope was ever found by him. He stated that since I have had a redo 5 years ago that the pouch is sewn closer to the anus and this burning is common. I too have tried every cream out there as well as lidocaine 5%, problem with that is it numbs and I have minor leakage issues and that makes it worse for me. He also suggested hyperbaric oxygen therapy for me as well but insurance wont cover and... [ more ]
jruggieri15 ❤️
Susan Marie Wilson Thank you for the advice! I will try anything at this point! I am surprised with the low carb and low fiber diet! I need to try that too! I haven’t been able to figure out what foods really aggravate my pouch but it seems like almost everything lately! Maybe it’s the carbs and fiber! Very interesting! [ more ]
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J-Pouch ForumsGeneral Discussion
Visbiome- Love it or hate it?
Z Zig
Scott F Zig, the antibiotics do tend to change the stool texture, but they don’t slow the gut. Some basic things that might enable you to tolerate them better are 1) trying a lower dose, 2) drinking *plenty* of water while on them, 3) stopping any bowel slowers, like Lomotil or Imodium, 4) carefully trying psyllium while on them. [ more ]
MJL Where do you purchase the herbal supplements? [ more ]
RHolt Zig, maybe you should try the combination of low FODMAP diet and Dsybiocide & FC Cidal, the herbs that are shown to level out the good/bad bacteria. The other tricks in my book are deep abdominal massage to get out gas and the use of a heating pad. I hope these may help you. [ more ]
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J-Pouch ForumsK-Pouch Korner
painful anal skin near Barbie butt closure
Rosie128Rosie128
emme Hi Rosie, sorry to read about your current pain concern. I can relate with you at this time too. I think an assessment with a colorectal surgeon would be a very good idea. Just wondering if your soreness and itchiness could be a result of peri-anal fissures or tags, or possible abscesses. Have had KP for over 30 years, and in recent years, have experienced chronic, diffuse pain and itchiness in this area. For myself I've suspected chronic intermittent pain due to p/a fissures & formation... [ more ]
LtlBird Recently a doctor found a mass where my rectum use to be. I kept telling doctors it felt like I was sitting on a baseball but no one would even look. It was like since I don’t have a rectum they thought there couldn’t be a problem there. Finally Dr. Shriller found this terrific colorectal surgeon in my state for me to see. He really listened and looked to see why my bottom felt like that. I was sitting on a big ball of scar tissue. He removed it as well as other scar tissue and it helped a... [ more ]
Rosie128 Thank you. I will be trying the bath, that sounds good. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Posterior thigh and hip pain, extreme
ChelleHChelleH
ChelleH Thank you! Very helpful [ more ]
skn69 Is the pain in the muscle, joint or nerve? Does it radiate, throb or burn??? Generally, I divide pain into categories...if it radiates down the leg from the hip or butt then it tends to be a sciatic type pain (pinched or inflamed sciatic nerve???), if it throbs often it can be a muscle and if it pulls or burns near a joint is can be inflammation or a pulled or damaged ligament... If the hip or knee feels hot, I usually opt for inflammation. Inflammation likes cold, or hot/cold alternating... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pyoderma gangrenosum after closure / proctectomy
SaffSaff
Saff Hey all thanks for your feedback, HI Caty - Yes I am using Advantan cream which is a topical steroid - different brand. Not on the ulcer - but on inflamed skin around it. Hey Scott - I just don't find it to have a positive impact on my mental health ( at large doses) so I wanted to try something else first. I also found this recent paper that did a comparison of pred to ciclosporin and the outcomes were quite similar.. https://www.bmj.com/content/350/bmj.h2958 Hope everyone is going ok with... [ more ]
Scott F Saff, why do you think prednisone would be a particularly poor choice during isolation? [ more ]
Caty Has your dermatologist suggested using Protopic (Tacrolimus) ointment with a non-adhering dressing? I have pyoderma gangrenosum at the 9 o'clock position at my stoma site. For many years Protopic has worked well for me. You have to keep on top of Pyoderma and attack it as soon as you notice a tiny ulcer coming or a blood blister appearing at the site. I know that your trouble is at a different location; just thought I would offer what has helped me. Caty [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Any moms who birthed age 40 or up?
linalina
lina Thanks so much for your replies. TMNoe, I’m slow to reply back! We are finally now beginning the ivf journey. It’s really a crazy time to be doing it but I stay completely socially isolated since I can work from home, and my husband is lucky enough to be able to do the same. We are very lucky. I’m scared to spend the money on IVF, I’m afraid to do it during a pandemic (but according to my bloodwork it is now or never...) and I’m scared of all the needles. Which is funny because of all the... [ more ]
TMNoe I had tried to get pregnant for years - through my mid 30s with my ex husband. It was a terrible marriage and I was stressed all the time. It made my UC disease worse and ended up with stage 1 colon cancer. I had my colon removed and jpouch etc - you know the drill. I did really well and I was very lucky. I got out of that marriage and moved to a new city where I met my now husband. Now I am SO glad I didn't have a child with my first husband! I tried IVF at 42 years old and I got pregnant... [ more ]
TMNoe ❤️
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J-Pouch ForumsGeneral Discussion
Was this a blockage?
D DJJ2019
Andreita I just got my J-pouch not quite a year ago and I'm still figuring stuff out. I was in the hospital in March for pouchitis and they gave me IV antibiotics. I felt better after 2 days. So that tells me it was pouchitis and nothing else. Also had a lot of gas pain. My GI scared me at first and said it was a blockage but xray didn't show one. [ more ]
DJJ2019 Update on my post: This is looking a lot more like pouchitis than a blockage. It's possible that pouchitis led to a blockage or a blockage led to pouchitis. Regardless, I started antibiotics (Levaquin and Flagyl) and very quickly started to feel better, in less than 24 hours. I was hoping that it was a blockage and it would clear without meds. [ more ]
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J-Pouch ForumsGeneral Discussion
Rifaximin (Xifaxan) VS Bentyl (dicyclomine)
Z Zig
Zig Actually constipation is listed with Xifaxan too. I’m probably using the word constipation wrong. I think I mean one or both of these are “slowing my system down” plus thickening it up. I have a stricture at my j pouch and I have a fine line between too loose and too hard. Its rough. [ more ]
Scott F Constipation is a reported side effect of Bentyl, but not XIfaxan. Why not stop the Bentyl and see what happens? Lots of things that can seem like constipation really aren’t. It’s only constipation if the stool gets hard. Other causes of difficult pooping need to be diagnosed and properly treated. [ 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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