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J-Pouch ForumsHelp! Need advice now!
It happened again leakage/sex
T tulsamom
tulsamom Thanks everyone!! [ more ]
Meatball I get the store brand, either from Target or Walmart. My personal preference is to mix the container that has sugar with the container with artificial sweetener, half and half (one is too sweet, one not sweet enough). In the morning, I take the equivalent of 1 1/2 tablespoons, same after dinner. I don't mix it with water, I just scoop it into my mouth a little at a time, and chase it with a swallow of water. I take so much I find it's easier and quicker than mixing it with a lot of water, as... [ more ]
Scott F Metamucil only has one active ingredient (psyllium). Some people get gassy from it, some get reduced gas, and some get neither. The optimal dose for each person is individual, but it’s easy, inexpensive, and low risk to experiment to find what’s best for you. Start with the directions on the package and vary from there. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lime cucumber Gatorade flavor. Is it considered ok to mix miralax w is it considered clear liquid?
Len78Len78
AMB Hi Len My gastroenterologist friends always said to avoid red or purple Gatorade/ juice/ jello or ice pops the days before the procedure. Other colors - like lemon-lime green Gatorade, are ok (I was never sure about which side of the line Orange Gatorade fell. Your post got me thinking of my last prep. My written prep instructions were to buy one 64 oz or two 32 oz bottles of Gatorade and one 8.3 oz bottle of miralax. I couldn't find 32 oz bottles. I don't think they make them any more. So I... [ more ]
Len78 The first nurse the main one of the dr said I should see yellow water with 2 miralax capfuls with just after consuming a couple glassfuls bc there’s no colon and I’m doing clears the 28th one day before pouchoscopy i really don’t know what approach to use I have the 4.5 oz empty enema bottles ready. im worried about stool sneaking down from higher up stream wit I don’t do miralax I still want to do an enema 99 mins before arrival/pickup to hospital [ more ]
Len78 I have 10 bottles of glacier cloudy cherry white flavor of zero Gatorade 28 oz bottles ill use along with drinking tea a black coffee or two and chicken broth every hour the day prior i stocked up certainly on the Gatorade, the nurse for my gi said to put 2 capfuls per an 8 oz cup of whatever I’m drinking every 10-15 mins of miralax another nurse must think I’m coloned she said mix 32 oz if miralax with 7 capfuls of miralax at 6 pm the evening before the afternoon day of piuchoscopy I have a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pudendal Neuralgia- does anyone have experience with it?
S SurvivingUC
grandmaof1 Thank you for the support. I just feel like I can’t get a break. I have had problems with my jpouch from day one. But this pain and urge and spasms are absolutely unreal. I will always remember what my surgeon said. You need A or B and they both suck. U of M never went over anything before or after my surgery. Looking back what a mistake. I love this site!!! I got more answers here then even my own GI dr. I’ll post what I find out. Thanks again. [ more ]
SurvivingUC @grandmaof1 I am so sorry to hear what you are going through. Wishing you luck for a successful appointment and a pain free outcome. [ more ]
Sara Marie @grandmaof1 I'm so sorry to hear about your pain. I hope you find some relief ASAP. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible obstruction/impacted small intestine
N Nela
Hazel I’m not sure how a doctor can identify a mass in any intestine and know that ”it doesn’t require surgery” without a more thorough investigation. I hope that at this point your pain has gone away or that you have had the mass checked out. Hope you are better. Take care... [ more ]
Nela Thanks Scott, all the emerg doc said was there is a mass in the upper part of my small intestine that doesn’t require surgery at this time and to come back if my pain gets bad again. I know I should have asked for more information. I’m starting to get pain again as we speak because I did eat an egg, my first solid food in almost two days? [ more ]
Scott F What did the ED doc say about the mass in the upper bowel? That’s kind of important. It’s hard to reconcile the mass location with your frequency and urgency, unless the feeling of urgency has nothing to do with your pouch (just pressure elsewhere that you can’t relieve). If you treat this as a partial obstruction then you’d focus on staying hydrated and avoiding any solid food. You could try white grape juice, or MiraLax if you’re feeling adventuresome. Mostly patience - *if* it’s a partial... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please advise. What time to drink miralax prep w Gatorade mixed for a 2 pm ppuchoscopy and egd w else endoscopic mucosal resection
Len78Len78
Len78 amb, thanks and i want to ensure im cleaned thorougly so im doing 90 min pror to scheduled pick up to hospital adding 2 warm tap water enemas. i was aware about the split dose miralax th enight before and 5-6 1/2 hours the day of the scope prior. yes its a newer protocol they adopted to instruct folks for pouchoscopy to split the miralax thanks for the well wishes. scared as hell. i have polyps at the anastomosis that in october failed to lift despite being injected with methelyne blue. im... [ more ]
AMB I am sorry you didn't get responses from the FAP members. I don't have FAP, but I have annual scopes at Columbia with banding of mucosa and I've had inlet stenosis treated with balloon dilation also. No tap water enemas, just a Miralax and Gatorade prep each time. They've recently changed to a split dose prep, (1/2 at 6 pm day before and 1/2 at 6 -1/2 hrs before the procedure.) But when I am scheduled early in the morning I still do a single dose starting around 6 pm the night before. Also,... [ more ]
Len78 after doing alot of investigating online/my own research i found its best to administer both tap water enemas one after the other atleast 90 minutes prior to leaving for the scope. the arrival time is set for 1pm around 11 am on the 28th of feb i plan to administer the water tap enemas one after the other after having miralax with gatorade clear cherry flavor around 6-7pm the night before pouchoscopy day i always have gotten standard gi prep instructions as if im going for a colonoscopy but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What time to give myself first tap water enema when my pouchoscopy is for 2pm start time with a 1pm arrival to the hospital
Len78Len78
Len78 hi jaypea thanks for your response. i will consider following your advice and use it as a guideline. i can do my 1st enema at 11am, my pick up/transportation to deliver me to hospital on pouchoscopy day is 12;15pm. i'll administer the 1st one slightly earlier so i dont feel the urge to expell while riding 15 minutes in the car to the hospital ive never dealt with or had experience with afternoon scopes in my 22 years of j-pouching a but nervous. former gi had me do miralax everytime. i... [ more ]
Jaypea My last pouchoscopy required 2 fleet enemas. One was 2 hours prior to the procedure and the last one an hour prior. I had to leave the house more than an hour prior so I did it just before I left. Surgeon said everything was great and had a good view. [ more ]
roseviolet Miralax is overkill in my opinion. I've had regular & interventional pouchoscopies. Was instructed to have a clear diet the day before and to use a tap water enema before leaving for my appointments, some of which were in the afternoon. You'll never be able to get the pouch perfectly clean, as it starts accumulating waste/mucus immediately. My doctors always said my prep was fine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diabetes type 2and ulcers stomach and duodenum Gatorade and other acidified drinks a no no
Len78Len78
Len78 hello jaypea, ive had a history of gerd and was treated for years with either nexium, prevacid, omeoprazole, and after years of having beeing told to stop one of those drugs (and having had acute kidney failure/renal injury) in june 2019, the hospital dr took me off nexium, so was last on it in my late 30;s in october of 23 of was prescribed pantoprazole by the attending physician of my care following hospitalization after delayed rectal bleeding from endoscopic mucosal resection (endoscopy)... [ more ]
Jaypea Have you been tested and treated for H Pylori? Not sure why Gatorade is contraindicated for ulcers unless it exacerbates your GERD. You could try Pedialyte. It is a clear fluid and comes flavoured. We use it in peds all the time for hydration and fluid challenges. [ more ]
Len78 Gerd not gets ive got gerd and the two ulcers peptic as described [ more ]
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J-Pouch ForumsHelp! Need advice now!
MR Enterography with a J-Pouch
R R.D.
R.D. Thank you for your reply. Yes, it does help to know your experience and gives me assurance that I could survive it and hopefully get the correct treatment. [ more ]
Ellie S I had one last May and it was a piece of cake. I did have to use the bathroom a lot while drinking the contrast. They wanted to look to see if I had anything going on with my small intestine. I think the test shows thickening of the lining and tells them if there is anything else going on. I recommend wearing a pad if you have trouble holding like I was having at the time. The staff also said they could take a break and let me use the bathroom if I had too. Both were unnecessary. I am not... [ more ]
R.D. I read everything. Thank you for helping me understand and I will ask my doctor about the treatments. You are very helpful. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage during sex
T tulsamom
tulsamom Thank you so much for your input. [ more ]
CJCowdell Bear with me here: I found that taking 1Tbsp psyllium husk, mixed in water, before every meal, stops the anal acid burn (bile acids) better than the medications WelChol or cholesteramine (for me). If my anus was acid burnt, the bidét cold water burned & really hurt. I went through hell for a few weeks with crazy burnt anal pain. Just tapping the anus dry, after the bidét with TP would leave slight tinge of blood. Luckily the cheap amazon (under toilet cold water) bidet works great now,... [ more ]
SteveG Just wanted to add that we are talking about a bidet attachment for the existing toilet, not a stand-alone bidet, to keep it inexpensive. There are simple attachments to fix below the toilet seat or integrated ones that replace the toilet seat. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loop ileostomy takedown
S shayulajiao
Grace S I see, yes it’s good to communicate those things and ensure as much as you can that you’ll be comfortable and taken care of for recovery. Best wishes to you! [ more ]
shayulajiao Hi Grace, I really appreciate your reply. And it is great to hear your j pouch works fine for so many years. Hopefully mine will be as good as yours. I guess I need to ask nurse change my pads under me more frequently. Based on the ileostomy experience, I have lots of loose outputs while I am having meal. I have to empty my ostomy bags right after finishing each of my meal. Thanks again for your reply. I am more confident for the new life now. [ more ]
Grace S Hi shayulajiao, I had a take-down surgery about 16 years ago, so my memory is a bit fuzzy, but I don't think you have anything to worry about for when you wake up . Usually you've got pain meds going through you from the IV, and I believe I had a urinary catheter, pads under me for any accidents, etc. I don't remember having any issues other than some abdominal pain when first getting in and out of the bed during recovery due to the incision. I'm sure your doctor and nurses will also inform... [ more ]
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J-Pouch ForumsHelp! Need advice now!
If J-Pouch failed, is pouch removal a must? J-Poucher from China
J Jiajun
Mysticobra Get well. Heal well. It's a tough surgery to go through. I've done it. It only gets better now. Richard. [ more ]
Scott F It sounds like you’re well on your way to a complete recovery, @Jiajun . I hope you can soon look back on this as a temporary nuisance. [ more ]
Jiajun Update I just had my pouch removed on Wednesday. Prior to the operatioon, the surgeon did a pouch endoscopy , My diversion pouch's condition was very poor, severe inflammtion alone wiith a lot of ulcers inside it. Its the time to get rid of it. My surgery lasted around 5 hours. In terms of the senior surgeon who performed the surgery described, my intestine adhesion like a pan cake, its extreme diffcult to release . Fortunately, they did it. They opend me up and took my pouch out from my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Obstruction and COLUMBIA
JS Jersey Shore
AMB How did you end up handling it? I'm a patient of Dr. Shen but live several hours away. After a partial obstruction with poor care in my local hospital (wrong meds offered, no discharge diet instructions leading to prolonged symptoms and delayed resolution,) I followed up with his office for guidance. I was given the correct protocol for re-introducing solid foods and told: if it happens again, get someone to drive you to the Columbia-Presbyterian ER. Now that I recognize what the symptoms... [ more ]
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J-Pouch ForumsHelp! Need advice now!
advice about NSAID use
J JHendrix
JHendrix Thanks Scott. Yes, I definitely meant stay off! Hopefully things will settle. I do have a scope scheduled in a few weeks. But I guess it wouldn't show bleeding if, as you say, it is higher up in the gut. It may well be food residue. As soon as I start to feel a 'bad gut' I can go down the 'worst' road. [ more ]
Scott F If the coffee grounds are blood (rather than food residue) then it’s not from your pouch, but from farther up the GI tract. Blood from the pouch would be red. NSAIDs can sometimes cause problems anywhere in the GI tract, including the J-pouch. I hope you meant to write “stay *off* the anti inflammatories and let it settle and heal.” Most of us can tolerate occasional NSAID use, but continuous use is pretty risky. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Now I am constipated
BA Bill A
Scott F There are at least three very different conditions that get called constipation here: 1) hard stools that the gut can’t move effectively, 2) partial obstructions that block the free movement of gut contents, and 3) problems emptying a full pouch. If you don’t work out which of these is going on then any solution is likely to miss the target. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Norovirus?
chili123chili123
chili123 Cleared up after 5 days. As always, thank you for your support ❤️ [ more ]
chili123 I'm certainly taking a stab at norovirus, just based on symptoms. Definitely ready for it to be over [ more ]
Scott F Antibiotics are not helpful for norovirus. Many of us are trusted by our doctors to have antibiotics on hand to promptly treat pouchitis when it occurs. The presumption is that we’ll use them wisely. [ more ]
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J-Pouch ForumsHelp! Need advice now!
inguinal hernia surgery w/ J pouch
V vince66
Jaypea Yes, that's exactly what I mean. Structurally your surgeon shouldn't be anywhere near the pouch. [ more ]
vince66 thanks / I take it when you say affecting the J pouch you don't mean damaging the J pouch [ more ]
Jaypea Nope, your inguinal canal and the J-Pouch are a long way from each other. Should not have an effect at all. The stress of surgery and the effects of anaesthesia are the only things that might affect the pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch recovery, butt burn
A Adry
Sara Marie Flavored coffee from starbucks probably has a lot of sugar, and people complain of sugar causing pouchitis, but I don't know that it causes the burn, but it may cause extra excretion due to the diuretic effect. (A coffee & cigarette first thing in the morning used to be a sure path to a BM back when I had a colon.) I like the calmoseptine because of the menthol cooling action. Zinc/calamine also protects and helps heal the tender tissue. I have also used non-menthol zinc pastes on my bum... [ more ]
Jaypea I used a barrier cream (zinc based) for about 6 months before things got better. I find that if I eat blueberries or too much tomato the burn is much much worse. I also found a cream (Dimethicone) worked brilliantly and wasn't as sticky or pasty as zinc. Calmoseptine, which some people think is brilliant didn't work well for me as the menthol in it was too hot for my delicate nether regions. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Xifaxin cost $1000 for 14 days!
H happytimes
kta This is an old post, but I pay $350.00 a month at israelpharm.com [ more ]
kta I am on Medicare as well and will be ordering from Canada when I need my next refill. I did originally pay over $1000 for a 30 day supply. Now they have denied me. [ more ]
New577 That’s insane to me. If it were me, I’m not waiting so long. If u are convinced it will work, I would do the Canada route. when I had private insurance it was not covered at all. I am on Medicare part d now, so xifaxin is not not covered on any of the plans. Fortunately, bactrim worked for my SIBO. I will say that btw the denials and appeals it was very frustrating and before I knew it weeks passed by. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch backed up
SJ Stephen J. Thompson, MD
Former Member 2 bottles of Magnesium citrate. I usually take one when I am backed up and that helps. You can start slow with one and see how you feel. [ more ]
Scott F Most adhesions are best treated by ignoring them (almost all of us have plenty of adhesions after surgery). If they are causing a major disruption to your life it can be worth having surgery to cut them, but the risk is that sometimes the surgery makes things worse instead of better (and sometimes it’s a huge improvement). Adhesion surgery almost always causes new adhesions to form. If you have to have abdominal surgery for a different reason a patient and kind surgeon may take the time (if... [ more ]
AK-NY Hi all - exactly same things here. prune Juice (NON pulp) is usually my go to. One small cup or those small cans do the trick. surprisingly I have a similar situation - although the juice helps, I have to distend my stomach and lean back for the final push of gas or poop and ALSO most importantly - while leaving back on the toilet and distending - I press the exactly middle of my abdomen - right below Ostomy towards navel / I feel like that gets things moving. Scott - how do u treat the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Worsening of incontinence after fistula repair
C C.S.
C.S. Thank you I will keep these things in mind. [ more ]
Scott F Oil of oregano is not of any interest to me. I am much more cautious with “supplements” than many folks. I do use potent (but pretty well tested) probiotics (VSL #3, changing soon to Visbiome), and they also might conceivably help you, at least by making your wallet lighter to carry around. Another long shot to consider would be pelvic floor PT. [ more ]
C.S. Thanks for your response and suggestions. Have you tried Oil of Oregano or know of anyone who tried it and had success…I saw this suggestion on this site as well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ilex paste
AngiebAngieb
ELH Please let us know when you get that email about the availability. [ more ]
Pouchomarx its on backorder from the manufacturer. Its the only thing i like using. They stated there are rumors out there that they are going out of business but stated thats is 100% false. They stated they should be having more product in early 2024.. they are supposed to email me when available [ more ]
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J-Pouch ForumsHelp! Need advice now!
First of 2 jpouch surgeries coming up
HP Hey Pooch
AMB My surgery was laparoscopic and I did not have a huge issue with pain following. The loop ileostomy took an little adjusting to. I expect you'll meet with an ostomy nurse in the hospital and they'll have you practice changing the appliance before discharge. My nurse showed me the equipment and ordered it for me in advance of the procedure so it was waiting for me at home. Appliances come in different styles and sizes, and your stoma will shrink over the first several weeks, so the apparatus... [ more ]
Godfrey Nolan For me it was all about the pain management after the operation. If you don't figure that out you will be miserable. I was told long after my first surgery that I should never be over 4/10 in my level of pain, so the second surgery was much easier to deal with. Contact your surgeon as soon as possible after the op if you're having to deal with too much pain and don't give in till they fix it. [ more ]
Mrs P ❤️
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J-Pouch ForumsHelp! Need advice now!
Help! Hospitalized for fistula - caused by pouchoscopy?
L LIGuy11
EAShien Hi there. I had two fistula (2018) and it was also a nightmare! Lots of Dr's not knowing what to do. I ended up at a hospital, referred to a GI specialist. Long story short, he didn't have time to drain the abscess so he did it without anesthesia. I still have trauma thinking about it. But...I was in SO much pain. Then I went to the surgeon who made the j-pouch and he fixed it. I did not have a scope prior and actually very overdue for one. I think, as you can see from this website, we are a... [ more ]
Scott F I’m sorry you’re going through this! Fistula openings are very small, so they can easily be missed unless there’s a specific issue that makes the doctor look painstakingly for it. It’s not surprising that the doctor didn’t see it, since it wasn’t (then) causing you any trouble. As far as I know I don’t think pouchoscopy can cause a fistula unless (perhaps) if there’s a serious and fairly obvious mishap.. The long-term goal of a seton is to hopefully enable it to heal up, but while it’s in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch failed :(
R Robbiusd
Jayda I’m so glad that everything went well and you are feeling better. Hopefully, the loop will cooperate for you (mine never did, but there’s always hope lol). Best wishes 😊 [ more ]
Robbiusd Morning Jayda!! yeah doing well thank you. Operation went ok and recovery has been straightforward which is a relief. I did wake up with a loop ileostomy which was a bit frustrating but apparently going back into the male pelvis to fiddle around again sealing the jpouch is very risky. however, not impossible so it’s an option if the loop is troublesome and i choose to take the risk they will do it. Just skin management close to the loop is difficult but much less annoying than feeling like... [ more ]
Jayda ❤️
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J-Pouch ForumsHelp! Need advice now!
Sweet Potatoes
D Derrick
Sara Marie Sweet potatoes aren't as problematic as russets for me. Nightshades are troublesome (tomatoes, white potatoes, peppers, eggplant) in general for me and sweets aren't nightshades - they belong to the morning glory family. I have also messed around with digestive enzymes and I think they are pretty good, but you have to experiment. Beano-type ones (generic is better because doesn't usually have sugar) are good for cruciferous veggies and beans for me, "Now" plant enzymes help with other stuff. [ more ]
Nikino Hi, my experience with sweet potatoes is that I can eat baked sweet potatoes baked in oven for 1 hour at 400, poke holes I’m it w/ a fork, no skins just one small SP inside only with a little bit of butter and sea salt, I use grass fed butter. However, I cannot eat sweet potato french fries, those cause me a lot of problems during evacuation. [ more ]
JanWillem Hmm gas is my enemy as well, I haven’t really figured out what the culprit(s) is(are). So far beer and anything with bubbles seems to be giving it, I think there is more. that Enzymedica Digest Gold sounds nice but I cannot get any real information on it, just &&(*! advertisement. Anyone else has positive experience with it? I use psyllium fibers for consistency which works great to keep stuff smooth (3x2g before dinner) and 5 x 2 mg Imodium (loperamide) on a daily schedule... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loose weight
T Truc
Truc Hi AMB; thank you so much for your advice, I am still on low fiber diet. [ more ]
AMB @Truc It does take time to gain weight back, but the fact that you keep losing weight and hair is not typical. It might be good for you to consult a dietician with j-pouch experience who may be able to guide you about what to eat. In the meantime chewable multivitamins like Flintstones brand would be a good idea, especially if you are still on a low fiber diet. I'll list some of the things that helped me to gradually return to my pre-illness/ pre-surgery weight. Others may have different... [ more ]
JanWillem Hi, first of all I hope you start feeling better soon. my experience with takedown is a little longer and I am no longer loosing weight. I lost like 12 kg / 26.5 lb after the operation permanently and bit more on my lowest point. 4 months after takedown is relatively short and if the direction is good (towards progress) my experience is that some of the weight loss is permanent but it stop at some point. off course always check your doctor if you are concerned [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constant BM
KO Ken Olivet
JanWillem Hi Ken, o man I remember those first few weeks vividly and I have felt your pain and I hope you find some relieve in the already great tips from previous posters. Some stuff that help(s) me psyllium fibers (2g) before meal (max 4 x day) Imodium spread over the day (I maxed 6 a day) walk, start small, like 500 steps 1 round a day and accept you sometimes need to change your pants. Took me 3 weeks to get to 5000 a day (3 rounds) but I got some pelvic muscles back and can do 10000 in 1 go 6... [ more ]
Sara Marie Doesn't pepto-bismol become toxic pretty quickly with frequent use? [ more ]
DorisR Try using pepto-bismul, it helps check the loose, frequent stools. Also, I use psyllium husks in cup of water once a day. This adds thickness to bowels and I go less often. It takes away the burn too. I take 3 imodium pills every morning, and an iron supplement which also slows things down. Hope this helps. It was a long journey for me to get to a place of control (over 20 years). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic dilated bowel loops/pseudo obstruction
duck11duck11
skn69 Hi Lawsonk, Firstly, there all different options, not all of them open surgery. I had a colostomy at age 2, closed a year later. It left me with chronic blockages as a kid. Eventually, I had a K pouch done when I was 18, in 1979, along with a total recto-collectomy. (for full-blown incontinence due to either IBD, irritable bowel, spastic colon...I got 2 dozen different diagnoses but they all added up to the same hell...my guts were in a knot, I had no sphincter, and had regular blockages.)... [ more ]
lawsonk I had my J-pouch surgery in 1991 and no problems until late 2019. Since, I am having similar problems as described in many other posts above. I have severe pain in the left lower abdomon (very close to where the temporary ostomy was), am unable to pass stool or gas easily, have pain every day. I have been hospitalized twice in the last 2 months for bowel obstruction and had to stay in the hospital, NG tube, NPO and wait it out. Eventually the obstruction worked itself out. I think the next... [ more ]
skn69 That is good news...any progress is still progress. I truly hated the idea of taking the risk of removing your pouch only to find out that that was not the root of the problems. This sounds so much more prudent...and hopefully you will get your answer that way. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Laxatives to clear blockage?
S Sask2015
Sara Marie This group has introduced me to the wonders of the warm tap water enema! They can be perfect for certain things and should definitely be part of our repertoire of choices when we're having gut issues. I'm so glad this helped you! [ more ]
Jaypea Enemas are OK however laxatives can be very dangerous in bowel obstruction cases and can cause bowel rupture at the very worst. [ more ]
Sask2015 Enema worked wonderfully! Thanks for suggestions [ more ]
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J-Pouch ForumsHelp! Need advice now!
No BM in 3 days, gas, and vomiting
S Sask2015
Sask2015 Cleared up with an enema. Very weak, but out of trouble now! Thanks for the comments [ more ]
Scott F I’ve never tried using a laxative for a partial blockage. Some GIs prescribe MiraLax for pouch emptying issues, but I’d be surprised if it helped the gut unkink itself. Lots of folks have reported here that the contrast medium they swallowed in the ER to prep for bowel imaging cleared up their blockages, perhaps because it’s quite heavy but won’t solidify. [ more ]
Sask2015 Is it risky to use a laxative [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible small bowel obstruction
A Alaine
Alaine I am on fluid’s fortunately. I was hoping for an image to confirm it. Thank you so much for the quick reply. [ more ]
Scott F Well, I think it’s probably a blockage based on your description. They are miserable, and I’m sorry you’re going through it. Most blockages are fortunately partial and end on their own. *If* you are able to stay hydrated then there’s not much for the hospital to do unless the pain becomes severe or you start vomiting. What would you like them to be doing? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic pouchitis
E Ezzy
Ezzy Thanks so much [ more ]
Scott F I stay on the antibiotics continuously, and I have no pouchitis symptoms or “flares.” I have tried stopping them a couple of times, but the symptoms return, and who needs that? If the antibiotics fail I will move to biologics without hesitation. [ more ]
Ezzy Thank you so much. Happy for your improved health. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Weak Pelvic Floor Surgery
Mema 1Mema 1
Mema 1 Thanks, Scott!! [ more ]
Len78 just a thought, and forgive me if im off base in my quest to help Mema but what about an anal mamotry test? could that test alone help reveal answers? obviously it isnt pouchitis. i dont know. how about a defography test? trying to help. forgive me if im off base. best wishes @Mema 1 --len [ more ]
Scott F Mema, I’d guess that the timing is related to your eating and drinking habits, but it’s hard to know for sure. After I was on Cipro alone for about 8 years it slowly lost effectiveness - this crept up on me over many months, so gradually that I didn’t notice the changes. In my case adding Flagyl did the trick and got me back to a good situation. Pelvic floor dysfunction is when the muscles don’t work together properly, with some relaxing as others contract, so instead of easily letting the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch
A A.J
A.J Thank you so much Scott. Hope you are well !! [ more ]
Scott F Hopefully you told your doctor about what you’re feeling when you wipe. That could be as simple as hemorrhoids or as problematic as pouch prolapse, Either one can sometimes interfere with pouch emptying. It’s important to avoid straining on the toilet, which can make everything worse. [ more ]
A.J I called my doctor and he just called in Cipro for me, I'm trying to get in ASAP. My concern is what I felt back there when I wiped, I could be wrong but it felt like it was part of the pouch. When I push too hard, the pressure I feel compares to a balloon being filled with water and how it weights down. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Crohns Fear After Pouchoscopy
M mrwolf88
SteveG If you are lucky, inflammation is not yet chronic and you can get rid of it with budesonide or antibiotics. I started with budesonide 10 years ago. It calms down inflammation a bit, but it can not heal my chronic pouchitis / ileitis. Nevertheless I am using it since then at a reduced dose, at the moment only half a capsule of Entocort (1.5 mg) before dinner. If I try to stop it, I feel inflammation (cufftitis I guess) after about 3 days. [ more ]
CTBarrister These findings are very common and virtually the same as mine (like Steve I am less inflamed in the pouch than in the neoterminal ileum and inlet), although usually not so soon after takedown. Usually more like 10 years or more. And throwing a Crohn's label on it really doesn't help matters, because the labels no longer matter. It's inflammation of the bowel, it has to be treated, and either you will respond to the treatment or not. And guess what? All the treatments are the same regardless... [ more ]
mrwolf88 Thanks for sharing, Steve. It's so helpful to hear about your experience as it provides some much needed perspective. I asked my doctor why we weren't starting with antibiotics and she said that she thought the steroid would help more with some of the inflammation above the pouch. I am still interested in at least trying antibiotics before I consider stronger immune suppressing meds. During the pouchoscopy they were on the lookout for any narrowing at the former stoma site as that is where I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal catheter
C caro
caro Thank you Deb C. I'll try them. I need mine now because the hole they made between my anus and my J pouch (inside me) is getting too small. I could go for another dilatation, but the last time they perforated my intestine. So I prefer to use a catheter and be super careful about what I eat (no nuts or raw veggies or fruits or potato skin, or mushrooms etc...) they all tend to get stuck. Thanks again! [ more ]
Deb C Try Medena catheter. I used to have one and am thinking about trying one again. I can't seem to buy one without a prescription. [ more ]
caro Thank you very much. I always had the transparent one. I don't know of any stores (in the US or Canada) that sell a 30 French Foley. They sell 15 and it is way too small, are you sure a 30 would be big enough? Would you know of any places? And thank you so much for all the informations! It was a nurse who gave it to me some 10 years ago. I am adding a photo of my old one with a quarter. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unexplained bleeding
T tshirt
tf I recently found out that I have internal bleeding in the small intestines. I have been anemic since uc dx in 98 & jpouch 2013. My ferritin level recently dropped to a 7. The test they did is called small bowel capsule/video capsule endoscopy. I go to a hospital in Philadelphia. The results angioectasisas & lymphangiectascua. Long words for B vessels that are weak an blood burst out. This pill takes hundreds of pics in 8 hrs time. I now am getting iron infusions. I bleed at the... [ more ]
tshirt Thank you Scott, I hadn't considered diving deeper with radiology, I will talk to my gastroenterologist and see if he can arrange this. Thank you also Steve. My surgeon has not been very willing to explore any other options but maybe with better scans she can see what is possible. [ more ]
SteveG Yes, strictures at the pouch inlet and that fistula you had 7 years ago sound like Crohn's. With all the problems you have, the strong bleeding and only having blended food, I can well understand your surgeon's advice to think about a permanent stoma. You could also have a surgery done to remove the strictured piece of small intestine at the pouch inlet, but that would involve having a temporary stoma again for some time. And it is not unlikely that similar problems evolve again. Not an easy... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Post bowel obstruction
VergieVergie
Maverick Plus You are so welcome, and I hope you get relief soon. [ more ]
Vergie OMG I would do anything to not have an obstruction! I have had so many I lost count! I’m seriously thinking that surgery is the answer. thank you for sharing and I’m so happy for you! v [ more ]
Maverick Plus I used to have obstructions every few years in maybe a 12-year period. For the last one, I had to have emergency surgery because my bloodwork indicated ischemia. Once I was opened up, they found that my intestine was twisted. They thought maybe that was my problem all along. It's been 10 years and, knock wood, I haven't had an obstruction since. I wish you the best outcome! [ more ]
See all 7 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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