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J-Pouch ForumsHelp! Need advice now!
Weak Pelvic Floor
Mema 1Mema 1
Mary O I’m not experienced enough to know that but since it’s thought that 3.5% of the population has the allergy, it seems like it should. As we all know, when we have one autoimmune disease, others may sneak in there too [ more ]
Sara Marie Ah! Black tea and wine always makes me think of the tannins. I thought that was what caused the sensitivity, but maybe it's this other thing! If I ask for a patch test at the allergist, do they automatically test all the potential most common allergens such as this one? [ more ]
Mary O It sure is a bit complicated. It is actually tomatoes, black tea, red wine and lots of other things that can be consumed, whether one ingests it whole or as an ingredient. [ more ]
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J-Pouch ForumsGeneral Discussion
SIBO and ommeprazole (hoping to stop the ommeprazole)
ehbraunehbraun
ehbraun I can’t actually say anything for certain, because my symptoms change from day to day, with apparently little explanation. But my insurance wouldn’t approve xifaxan, so i took something else… i forget right now exactly what. After the course, i started loading up on pre and probiotics, and didn’t resume the ommeprazole unless i really need it. I now take Ommeprazole about once or twice a week, sometimes less. But i do have the occasional sleepless night with a yucky stomach. I think what... [ more ]
Karrine Ellen - I would love to hear more about your SIBO journey. After years (16+) of ongoing concerns I finally have a great gastronologist who diagnosed SIBO but as soon as I stop the Xifaxan all the pain and symptoms come back to a debilitating degree. I am starting to look at diet and anything else I can do to help get my quality of life back. [ more ]
ehbraun That’s all very, very helpful! Thank you. I’m definitely in the middle of a rebound situation, and even my usual high dose isn’t helping. Yuk! [ more ]
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J-Pouch ForumsGeneral Discussion
App for tracking food and bowel movements
T tshirt
SteveG @tshirt I would not focus on diet but visit a doctor if bleeding is happening regularly. If the blood is looking bright red then it is fresh and likely to originate from the pouch or anal region. If it is darker or black, then the small intestine or stomach are more suspicious. If you feel unusually exhausted you should also have your iron blood levels checked. [ more ]
Ryan138 I hope the app can help you find if a food is the cause of the bleeding..keep us posted [ more ]
Ryan138 I use a poop tracker app..works good [ more ]
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J-Pouch ForumsGeneral Discussion
8 YEAR VEGETARIAN REVIEW ALL DONE!!! READ AND ASK ANY QUESTIONS :)
FM Former Member
Former Member ❤️
Former Member That is amazing!!! I am glad about people doing things like that for moral reasons. Same with me for being vegetarian for 8 years. I tip my hat you for being vegan, I hope you can do a review as well and even a "What you eat in day" menu too! [ more ]
AnthonyA Overall yes, to save animals suffering. That it also seems healthier is a bonus. I will see if the pouch health stays good. 25 years of pouchitis to become clear (ish) in a year is pretty dramatic. If it lasts a few years, then the only thing I can put it down to, the only change, would be the diet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vitamin D3 absorbing it
Pilot DebbyPilot Debby
lablover My DH takes off his shirt on walks to get Vit D. He also has drops that he puts on his food. [ more ]
SteveG I guess there is a problem absorbing it, because the dosage I need is much higher than the recommended one for healthy people (800 IU a day here in Germany). Vitamin D is absorbed better if you have something fatty together with it. It's a liposoluble vitamin. [ more ]
CTBarrister The normal range on Vitamin D is 30 to 100. Keep in mind the best natural source of Vitamin D is sunlight and, for most people, 30 minutes a day maintains a sufficient level. People who live in rainy or cloudy climates may suffer from Seasonal Affect Disorder which is related to vitamin D deficiency and causes mood swings. I take 5000 iu Vitamin D daily and that keeps my Vitamin D in the normal range which is 30-100. I get blood tested quarterly due to both Remicade monitoring and thyroid... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Antidepressants
P Pouch2021
lclassen I've been on so many over the last 25 years! Hard to remember them all. In a general sense, I stick with something that is NOT coated or time release. I have had success with capsules or tablets that absorb in the stomach or small intestine. Currently on Lamictal (lamotrigine), Trazodone, and Trintellix. I have also been fine with Klonipine (for anxiety), valium, zoloft. The one I couldn't take was Pristiq... came out same way it went in (lol). Hope this helps. [ more ]
Kangaroo I take celexa and I don't think it has caused any issues with my pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming surgery
stlindenstlinden
Len78 You had a mucosectomy @Pilot Debby since you say your jpouch was stapled lower..they took your cuff. I.may need that bc as someone with familial polyposis I have polyps in my rectal cuff..just had.an endoscopic mucosal resection in April. Due for surveillance October 10 again after last set of scopes were done April 20.. Len [ more ]
Pilot Debby After I had j pouch surgery I continued to have UC in my rectum. About a year later my rectum was removed and they had to re-staple my j pouch down lower. And yes you are right it does support the vaginal wall but I have gotten along fine without it. I do have some seepage once in awhile but that is usually if I do not empty my pouch enough. I doubt you will have sex for awhile after the surgery. If you are healthy I would say 6 months at least but then I am not a doctor. [ more ]
stlinden Thanks Pilot Debbie. It will be a two stage surgery. I am more worried about sexual function/pain after surgery. The rectum is not only for holding waste, but also helps support the vaginal wall, so that is a concern. I know it may be selfish, but sexual activity is important to me, as we just got my husband's health back in good shape, and we enjoy a pretty active sex life, sorry don't mean for TMI. I also do not want an obstruction. I know my mom had one after her IRA procedure 40 years... [ more ]
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J-Pouch ForumsGeneral Discussion
Secondary Addisons
GEB56GEB56
Mcalen Hello! I have also developed steroid induced adrenal insufficiency from taking steroids for UC, and I now have a pouch. I would like to tapper down when my pouch is stable. There is a support group on facebook for people with steroid induced adrenal insufficiency, who have developed this due to steroid use for various kinds of conditions (further to UC). You can see many useful posts there. AIT&R - Adrenal Insufficiency Tapering and Recovery | Facebook Some key points from my personal... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Confused
C Charlie1026
Scott F How sure are you that the oral mesalamine make you bleed? That’s an unusual side effect, and it can be hard to tell what’s causing a problem. I do suggest that you get the inflammation under control if you can. It’s fine if you can do that with diet, but most people need medication to control cuffitis. [ more ]
SteveG Those suppositories didn't help me either. But that's individual, you need to try. If you feel your diet has a positive effect you should stick to it and try something different now and then to confirm it is still necessary. Budesonide should also be effective against inflammation in the pouch / cuff area, it is a locally acting cortisone. I've been taking it for more than 10 years now for chronic pouchitis, starting with the usual dose of 9 mg a day and reducing step by step to a low dose... [ more ]
New577 Hi, I had high grade dysplasia in my rectum and therefore I needed to have a two step procedure. GI told me that if I did not CRC was next. Not surprisingly, Cuffitis was next and pretty quickly since the cuff is the 2cm remnant of the rectum. I’ve been told that unchecked inflammation will eventually lead to dysplasia. Since I am adamant about no further surgeries, I take the canasa suppositories daily to keep the inflammation in check. If Canasa did not work it would be biologics as I... [ more ]
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J-Pouch ForumsGeneral Discussion
Leakage and incontinence
W WendyK
Pouchomarx I am just going by what Dr Shen suggests from his research. I agree Cipro works well as I have taken for years. I do have neuropathy now but no idea if caused by the Cipro.. I cant take flagyl as it makes me very nauseaus , but i have no issues with tindamax. [ more ]
WendyK Thank you all!! [ more ]
CTBarrister I agree that Cipro should be 1st choice, and failing that Cipro and Flagyl in tandem as they are two very different antibiotics from different antibiotic families and work on different types of bacteria thus providing "shotgun" protection against all potential bad bacteria. Ciprofloxacin is a fluoroquinolone (flor-o-KWIN-o-lone) antibiotic , Whereas flagyl aka metronodazole is a nitromidazole. As my GI says they provide "different coverage." But in tandem they provide more coverage. To use a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
3 things. 1) Feeling like I can't evacuate. 2) Pushing too hard. 3) By pushing too hard can you damage the J-Pouch
BS Ben S.
lclassen I've had the same issue. My GI referred me back to my surgeon. Surgeon sent me to pelvic floor Physical Therapy. They also suggested using something called a "Squaty Potty". It's basically like a step stool to put your feet on while you go. It helps to put your body in a better position for the pouch to empty and eliminate the feeling of needing to push. Just a thought. [ more ]
AMB Glad to hear it. Hope you'll let us know what you learn. [ more ]
Ben S. I'm going this Friday for a pouchoscopy. [ more ]
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J-Pouch ForumsGeneral Discussion
Vegetables_Cucumber and Tomato
E Enterin
Former Member ❤️
New577 I am surprised to hear that a breakfast/lunch item is affecting nighttime sleep 12-16 hours away. I am 2 years into this and try to follow a pragmatic approach to food choices. - when I can eat - what I can eat - how much I can eat at this point I pretty much know with good degree of certainty, based on the above, how a particular food is going to work with my body and I act accordingly. [ more ]
Scott F Some foods do have more insoluble fiber, and that will add volume to the stool. A J-pouch isn’t very large. OTOH, if your stool is too liquid it can tend to increase frequency, and something like psyllium husk, even though it adds bulk to the stool, can help. [ more ]
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J-Pouch ForumsGeneral Discussion
What are strictures/narrowing?
F Fredz
CTBarrister AMB, I only just saw your post now. That's interesting and I will ask myGI which type of anastomosis my surgeon did, as my surgeon passed away in 1996. As a matter of interest my pathology report on my recent pouchoscopy just came back and here is a redacted version of it. These issues being described and the polyp are all at the inlet area that was strictured: Surgical Case SURGICAL PATHOLOGY REPORT 1. SMALL INTESTINE, INLET J POUCH, BIOPSY: - GRANULATION TISSUE AND FIBRINOPURULENT EXUDATE... [ more ]
AMB Regarding inlet strictures, the explanation I received is that this can be simply a mechanical issue for some. There are two surgical approaches to connecting the pouch to the small bowel - an "end to end" anastomosis which results in a straight channel and a "side by side" anastomosis which takes a bit of a turn. Either can result in their own type of stricture which may require endoscopic attention. I have a side-by-side, have been balloon dilated once - no inflammation involved in my case. [ more ]
CTBarrister Here is a diagram of the J Pouch enabling visualization of Afferent Loop: [ more ]
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J-Pouch ForumsGeneral Discussion
Poop less often
A AustinA711
rcrossco_1 NOTHING beats Codeine Phosphate, either 30mg or 60mg. Makes rubbish like Lopermide feel like Paracetamol vs Fentanyl for pain! I took Codeine for many years, and I had a few chicks who actually had NO idea I had ever had surgery at all. It basically gave me almost a normal persons life. Naturally you have to be sensible, too much and you get blocked, which isn't much use for a pouch which relies mainly on gravity! [ more ]
SteveG It's a good idea to drink little with a meal. Otherwise you would thin down your digestive gastric fluids. If you add supplements to some already chewed food into your mouth, enveloping it a with food using your tongue, it should be no problem getting it down with no or little water. [ more ]
Kushami Seconding the suggestion to separate drinks from food intake – a couple of sips won’t make much difference, but a glass will, in my experience. Also avoid foods that consist of fluid plus chunks – sorry that sounds horrible but I don’t know how else to say it! So a broth-type soup with cubes of vegies floating in it. A broth or puree on its own is okay for me, it’s the mixing of solids with a lot of fluid that caused problems, whether that was how the dish was or whether it was mixing a... [ more ]
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J-Pouch ForumsGeneral Discussion
Bloated
M my5grandsons
Sara Marie I have had this before and I drank a lot of water (and hot herbal tea) even if I vomited it up. I also did a lot of moving around to try to get the kink out. My obstructions aren't actually a foreign object in the intestine, but rather, a kink caused by the adhesion to the body cavity at the site of the old ostomy site. They have always resolved within a few hours due to the above actions, however, I would go to the ER if it hasn't resolved yet. [ more ]
AMB Sorry you have experienced this. Sounds like an obstruction or partial obstruction. When it happened to me, I was told to get to the ER, then to stay on clear liquids for a few days and then advance to liquids for a few days more before trying solids. You didn't say if your pouch was emptying. If you are unable to empty your pouch or keep liquids down your doctor will probably suggest the emergency room. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture Dilation
N NB2022
CTBarrister Thanks for posting that Scott. I was not aware of these devices. The prior post had referred to "Hager" which coincidentally manufactures digital tools: https://hager.com/intl-en/support/digital-tools I take it from your post that Hegar and Hager are different companies making different things. [ more ]
Scott F Hegar dilators are graduated rods used to dilate accessible orifices (e.g. a pouch outlet stricture) https://en.wikipedia.org/wiki/Hegar_dilators Digital dilation is dilation with a finger (digit). Sometimes the procedure goes a bit too far, and the recovery is challenging. I prefer gradual, repeated procedures over days and weeks, but that’s got its own issues. [ more ]
CTBarrister So was this a strictureplasty? Was scar tissue removed and was the anal sphincter cut? I am still not clear on exactly what was done. Hager is a maker of digital tools. I am not aware of a procedure by that name. I assume that prior to this procedure you were unsuccessfully dilated? [ more ]
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J-Pouch ForumsPouchitis
Betadine (Povidone Iodine) versus Pouchitis
K KarlaGreece
Chacha While googling for "betadine and proctitis", to see if I might be able to try something new in order to alleviate myself of the extreme pain I'm experiencing, I came across your post about "betadine and pouchitis", which I first read as proctitis. Your concerns and questions are very similar to mine, and even though this is a fairly old post, I was wondering if you'd seen this study or not. I will be seeing my surgeon next month, and will be asking him about the possibility of using this... [ more ]
KarlaGreece Scott (Scott F), Kate (KateNet) & CTBarrister, it is so good to get to know people who help -- thank you all. After all sorts of antibiotics, ready for biologics (UC in 2015 at age 54, J-Pouch in 3 stages in 2016, pouchitis on-and-off since 2017 treated unsuccesfully and repeatedly with antibiotics and alternatives like vsl#3). Given that biologics (Remicade, Stelara) failed miserably during the UC era, not too much optimism (rather the opposite). It is just that betadine has been used... [ more ]
Scott F Karla, the J-pouch is living, active tissue - it’s probably best to be gentler with it than you would be with a plastic bag. There’s not a lot known about what would be an ideal microbiome for a J-pouch, and it might even vary from person to person based on immune system differences. In any case, have you methodically gone through the full set of conventional pouchitis treatments? There are a variety of antibiotics, and they can be used in combination when necessary. If that doesn’t do the... [ more ]
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J-Pouch ForumsPouchitis
what is standard?
J JHendrix
Scott F Biologics wouldn’t be used for an “ordinary” bout of acute pouchitis. 10-14 days of antibiotic treatment is usually used for that. Biologics are used for chronic pouchitis when antibiotics don’t work or when the provider judges (for one reason or another) that antibiotics have become problematic. Ulcers are just a symptom of uncontrolled pouchitis. [ more ]
Ezzy Are biologics being prescribed for pouchitis these days? what about if there are ulcers in the pouch as well [ more ]
JHendrix Another question about Ciprofloxacin and Metronidazole...do they slow down the bowel? After just one day (two pills twice a day) I'm having infrequent movements and the stool is quite firm. I'm hoping this is normal [ more ]
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J-Pouch ForumsGeneral Discussion
Heat!!
Y ytcrockpot
ytcrockpot Humidity is a killer, must find a cooler place for next summer, maybe Alaska or Australia lol [ more ]
Sara Marie I'm a room temp water drinker. Cold water usually feels bad to ingest. [ more ]
Mysticobra I drink anywhere from 60 to 80 ounces a day. That does not include coffee or a soft drink I may have. I don't think they count. Lol. But I'm not working. When I was working I know I drank at least two gallons. A day! Most at work. I'd down a 20oz bottle at once and go get more. I don't need as much now. And Scott. My urine is clear. That is the best indicator. I totally agree with that as a benchmark. Just wondering how many people drink room temperature water as I do? Or cold water? I can't... [ more ]
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J-Pouch ForumsGeneral Discussion
warm water enemas
S scallop
Pouch2021 Thanks Sara Marie for the recommendation. The weight gain isn’t for lack of eating, other than perhaps not eating as much as I should during a busy work day, as I can really put food away. Completely omnivorous and eat a varied diet of largely unprocessed food though I have a soft spot for salty kettle chips. Eat full fat cheeses, nuts, tons of avocados, cook mostly with olive oil but do not avoid butter. Love shellfish raw and cooked. Eat spicy Thai and Indian. Honestly the foods that most... [ more ]
SteveG It's up to you what position you prefer. You can go down on hands and knees while doing the enema, I just squat a little and lean forward. It takes only a few minutes, you could even adjust the speed by opening the valve only partially. Of course with that 1 liter cup and the hose it is not an ideal mobile device. [ more ]
Sara Marie How long does that take? Do you lie down while it's draining into you? I saw that set up was available at the drugstore but it looked like so much gear. I was looking for something that would be small and packable, though your method sounds pretty gentle. [ more ]
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J-Pouch ForumsGeneral Discussion
Ilex update
PouchomarxPouchomarx
Pouchomarx I have been searching for something comparable as its very expensive too, but i have found nothing even close to it.. [ more ]
CTBarrister I am wondering if it might make some sense for Ilex to sell to a bigger company that does not have the same prioritization issues with their suppliers. The email you posted kind of begs that question. I suspect someone at a bigger company who read that seemingly widely circulated email might be thinking the same thing, and formulating an offer to purchase Ilex while knowing that they can cure those supply chain issues in a way that Ilex cannot. It seems like that possibility is more likely... [ more ]
Pouchomarx I really hope they dont go under. This is the only product that i like, there are no others that compare unfortunately.. [ more ]
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J-Pouch ForumsGeneral Discussion
Side effects of Meds
P Pals
Pals thank u for the response up to This point my j pouch is not bad. It is the medication for UC is where my issues are coming in to play [ more ]
ytcrockpot I’m so sorry to hear you’re going this. Having complications with the J-pouch is bad enough. The medication side effects are crazy nowadays. What you describe sounds like side effects from biologics. I’ve been doing this JPouch thing for 42yrs now and only within the last 10yrs have I struggled with inflammation and now that I’m older (60) it’s really hard. I tried biologics which made me deathly sick. yes Biologics and steroids work, is it worth the side effects? That’s how I look at it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding from meloxicam
DB Dr. B
Scott F Maybe the backup doctor would talk to you on the phone? This really doesn't require a physical exam. [ more ]
Dr. B I called the Dr's office, no appointments available by backup dr for two weeks. By then, my Dr will be back. I will look into the steroid enema. Thanks [ more ]
Scott F I’m not aware of an authoritative answer to this. If it happened to me I think I might go straight to a steroid enema, perhaps budesonide or cortenema, to try to calm down the inflammation. Perhaps you could get a prescription from an Urgent Care, if you lucked out with the practitioner you got. There’s really no one covering for your doctor? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Periods and pouches
J J9Pouch
Scatty So happy to of found this thread, even if it has been a few years. I also get very bad pain during ovulation and my period. for about 3 or 4 days during Ovulation and the run up to my period i have such bad bowels, butt burn and bathroom visits that i end up on the floor after trying to breath through the pain till it passes. I have found rectogesic really helps during those times, along with hot water bottles, paracetamol and a bit of self care There was a part of me that doubted it was due... [ more ]
Maria410 ❤️
LC I also found that menstrual cups reduced my cramping and pouch problems. Its interesting how that works. I would recommend looking into birth control that reduces cramping and bleeding. I also know that the really potent anti-inflammatories were a HUGE help if you don't want to go the birth control route. They have some pretty serious side-effects if you take them long term but you might only need them 2-3 days a month. I just happened to stumble on this when I was taking celebrex for... [ more ]
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J-Pouch ForumsGeneral Discussion
Losing hope - any ideas?
I ItHurts
ItHurts Thank you everyone I have started pelvic floor therapy (2 sessions so far) and will look into a second opinion with Dr Holubar. [ more ]
Glenys D Sorry to hear about your situation. I've had improvements with seeing a pelvic floor physiotherapist. I hope you find some help soon. [ more ]
Kushami If you live in the US, another possibility for a second opinion is Stefan Holubar, at the Cleveland Clinic last time I checked. [ more ]
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J-Pouch ForumsGeneral Discussion
Methotrexate and joint pain
ehbraunehbraun
Glenys D Hi, I've found that without Methotrexate, I have joint pain. But I had to stop Methotrexate as it lowered my White cell count. I was taking it in conjunction with Biologics. So now I am trying Naturopathic medicine to help with the joint pain. We'll see how it goes! [ more ]
Pouch2021 Hi Ellen, Our immune systems change over time and as we age. Often rheumatologic diseases, including enteropathic arthropathy, can lessen in severity or burn themselves out. It is not uncommon for patients, even those with severe RA, to require less medication over time or even be able to taper off completely. I can’t speak to if this is the case in IBD. Glad you’re feeling better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch construction in a week - getting cold feet about my surgeon
L liza_s
Kushami ❤️
Kushami Asking about how many j-pouches the surgeon has done and how long they have been doing them for is a good place to start. You could also ask where and with whom they trained on j-pouches. But the problem with asking these questions is that there is no way to verify the answers. It is unlikely that surgeons would lie, but that’s not entirely comforting when you are about to have major surgery. You could search the surgeon’s name here and in other support groups, e.g. Facebook, Reddit. Or just... [ more ]
lablover As I recall (I think it was 1990), my DH's colon doc recommended the surgeon at GW hospital in DC.: Dr. Orkin. My husband felt pretty comfortable with him. [ more ]
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J-Pouch ForumsPouchitis
Constipation
M MJFMJF
Scott F A blockage further up can feel similar to a full pouch that won’t empty. Are you pretty sure the pouch is full? Assuming you’re already drinking plenty of water, careful use of MiraLax can often get things going. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Air coming from old stoma site
R Robbiusd
Sara Marie Yes, my doctors assured me that the cancer would come back if I didn't remove the whole colon, but they didn't really know that. They were just trying to be authoritative, and were doing the best they could with the limited knowledge and experience they had. [ more ]
New577 I think alot of us wish we did things differently. Because my dysplasia was in my rectum, they insisted that I have a total procto colectomy. I said why not a low resection? No no they said as the UC/dysplasia would migrate to that area and I would be back the same issue in a few years. but given I had a fistula at the stoma site that leaked and almost killed me, I wished I never had any surgery and just monitored the dysplasia. But the doctors were so afraid of cancer I submitted. btw, the... [ more ]
Sara Marie I had severe yeast throughout my alimentary canal when they went to reconnect and sew the stoma shut and my tissue was too weak to hold the stitches, so weirdly, they just left it to heal on its own (even after the yeast was treated) and put me on total parenteral nutrition for a while. The stoma wasn't infected, but it still leaked goo for quite a while, and I just had gauze taped over it which I had to change frequently. It was quite surreal. It did heal up eventually, but I'm not sure how... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone doing a ketogenic diet with a jpouch?
F Fredz
Jaypea No I know I am not in ketosis as I do not eat enough fat and include too many sugars in my diet. For example yesterday I ate completely carb free until dinner when I had sushi. As I mentioned I do not follow the ketogenic diet strictly as I don't need to manage my sugars. I do it because it makes me feel terrific and when I want carbs I eat them! Works for me. [ more ]
Fredz Great to hear! But you do notice that you are in ketosis and running off fats? [ more ]
Jaypea I try to follow a keto diet as much as possible. I started it after being tested for celiac (I'm not) as I had horrible stomach cramping, intermittent bloating then diarrhea, joint pain and insomnia. As soon as I cut out carbs (and sugar) I felt immediately better. Far more energy, no more joint pain and my thinking was more clear. I did lose a ton of weight and now have to be very very careful that I don't lose too much. I'm now 3 years in and enjoy the occasional scone and sandwich with... [ more ]
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J-Pouch ForumsGeneral Discussion
Sex
A AustinA711
Former Member Oh dear!!! Its not recommended, all I can do is say that. I wish you would not do that do though. [ more ]
AustinA711 Late reply, but I am able to and it is great. Took me a little while, but slowly training my body and going slow has done wonders. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Stoma vs pouch output?
MJ Manoj Jain
Manoj Jain Thank you @New577 this is all super helpful. My BMs still remain less during the day. While I’m still figuring out my diet, whenever I feel heaviness in the abdomen area, I take Duphalac which helps in passing applesauce type consistency BM. Hoping this to get sorted soon. [ more ]
New577 it was two years ago, and 10 days after takedown at the stoma site from a undiagnosed fistula. I was leaking stool from my abdomen after the surgical staples were removed. That’s how I knew I was in big trouble. Remember, solid BMs should not be your goal. Loose applesauce type consistency should. It takes time for you and your pouch to figure out what to eat, when to eat and out much you can eat. another member described the early days as being terrifying, as our bodies and our brains are... [ more ]
Manoj Jain Thanks for your response. @New577 did you have more solid stool or the frequency reduced when you had a leakage issue? I don’t have any pain or fever as such after 7 days of take down but from last 3 days (since I was advised to start soft diet), the frequency has been very less, hardly 1-2 solid BM which gives a lot of irritation and burning sensation. I’m keeping myself fully hydrated throughout the day so hoping things will fall in place soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Keto diet
H happytimes
Fredz Hey! Were you able to eat a moderate protein/high fat keto diet with a jpouch? My conern is that too much fat will cause loose stools. I knew it adjusts for normal people, but was unsure if it did for us with a jpouch. But you were able to do that without loose stools? Thanks! [ more ]
skn69 Hydration is a very individual thing...it also depends , I think, on the age of your pouch and if you have pouchitis often. I put pay to poucitis about 25yrs ago so I dehydrate less. I also rarely over-hydrate because I have low blood pressure and over-hydrating can be dangerous in that case...it washes out too many mineral salts from your bloodstream...and your BP could bottom out. So I drink what my body asks for and no more. I have a large class of water, 1 of orange or tangerine juice... [ more ]
Molina Recently joined this site, and am loving all the information! Wish I joined sooner. UC, 2008 J-pouch, 2013? (I block it out, I don't know why) [ more ]
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J-Pouch ForumsPouchitis
Treatment
E Ezzy
Scott F Cipro and/or Flagyl are the first-line treatments for pouchitis. The only reason to start with something else is if the patient is known to be intolerant to one or both. If something else is needed, because the treatment causes unacceptable side effects or doesn’t work, or the condition becomes chronic then the decision-making gets more complicated. [ more ]
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J-Pouch ForumsPouchitis
Tinidazole Dosage
D DJJ2019
BK 123 Hi, I'm on Tinidazole for the foreseeable future. I take 500mg twice/day. Been on it a year now and it seems to be working with no side effects. I should also note that I've been on Humira for the same length of time. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
C- Section Incision
H Hilly
susbo I didn't end up needing a c-section with any of my pregnancies, but my OBs did talk about which incision they would use if the need arose. They gave me the same advice you got (with healing being harder for vertical, but could be nice to avoid having an additional scar) and left it up to me. My decision was to get the bikini cut-- my abdomen is a chopping block anyway, and I wanted the "easiest" recovery possible. The bikini scar is very low, so there's never an instance where it would be... [ more ]
Its Not About Me My dr didn’t ask, he just told me they were going to go over the same vertical scar. He did say why make another scar. Afterwards he said he did have to cut away a lot of scar tissue, but I didn’t have any problems healing or pouch issues after delivery. I personally didn’t need any pain killers, just some regular Tylenol to take the edge off for the first couple of days. I was considered a high risk pregnancy and had some of the best OB drs in Chicago. Everything went smooth and I healed... [ more ]
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J-Pouch ForumsGeneral Discussion
Do I need to worry about gallstones and kidney stones?
F Fredz
Scott F Individual factors matter a lot, and oxalate metabolism is complicated, but basic chemistry has the last word. Lots of people think they are well hydrated but aren’t, and some are just unlucky. [ more ]
Fredz So comforting to hear! Thank you [ more ]
Fredz Thanks a lot, Scott! I appreciate you answering every question I have, you should be paid for your activity. Yeah, I read on the fb grouo that many people have problems with kidney stone and many of them stayed well hydrated. I assume oxalates and many other factors like genetics are at play as well? Must be a ton of kidney stones from people doing ramadan. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Burn
R Rsawyer
SteveG A fissure gets painful when things get stuck inside (during a BM), for example little undigested peanut pieces. Fissures tend to produce a wrinkle in front of them, toward the outlet. That makes them even more prone to contamination. If you identify the fissure soon and keep it clean, it can heal. People with a colon and formed stool should keep their output soft, so the anal canal is not stretched too much and the fissure breaks open again. There are also special creams for such fissures. [ more ]
Sara Marie When a fissure does heal, how do you know? What's the difference between clearing and healing? I have had them (or maybe painful hemorrhoids?) off and on over the years. [ more ]
SteveG Linda, if the pain goes away when you do an enema this is a clear sign for a fissure. You may use clear water or add a little bit of salt to make it isotonic, there is probably not much difference. People here often recommend to use an empty fleet bottle do do the enema. But remember that this is only a quick fix to clear the fissure. You are dealing with this issue for such a long time now, that there is scar tissue at the fissure. This won't heal by itself any more most likely. That's why... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BAM
E Ezzy
Scott F If the burning is external then preventing it with a barrier cream *after* every BM works quite well for many (and did for me). If the burning is internal then a topical may not be the best approach. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unable to digest protein . Protein Intolerance?
M meghspd
lindaslankard Thank you. I’ve tried most but haven’t tried all. But I will. Thank you very much! [ more ]
Sara Marie Aloe applied to the anus and a little inside has really helped me, depending on the kind of discomfort: it speeds healing and provides immediate relief as well. I often take aloe internally (juice or caps) as well to help with healing from the inside. If the burn is from frequent stools, Calmoseptine helps me. Also, psyllium powder, 1 tsp with 8 oz water, before each meal helps the stools be better formed (but not hard at all-because of the 8 oz of water) and provides a mucous layer that... [ more ]
lindaslankard Does anyone know what to do about severe burning and spasms after bowel movements. It’s like when you get up to walk, your poop just instantly goes to your rectum and it starts pressure and severe burning I mean so bad it brings tears. Anyone can help?? [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
Serotonin and Paxil
S superfannypack
DJJ2019 This has been a battle for me ever since my first surgery. SSRIs have always given me pouch issues mainly cramping and loose watery stools. I have not seen any studies on this, but I would not be surprised if our serotonin is messed up, and that we are more prone to depression because of it, hence many of us needing anti depressants sometimes. I hope your withdrawals level out. I’m at the stage now after a bad bout of depression that I may just stay on them for life. [ more ]
KennyJG44 I wish there was more information out there regarding this sort of topic. I had my JPouch surgery almost 20 years ago, and have struggled with depression ever since. I am sure there is some sort of genetic pre-disposition, but I would have to believe that removing the organ that produces 90% of the body's serotonin would be problematic in this regard. I wish someone would have mentioned that all those years ago. To this day, I rarely, if ever, find information/articles that focus on this. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Stool Color
D Derrick
New577 In the beginning, it freaked me out a little but now I pay little attention to it. the only thing I will add is that the darker the color the longer it has been in my pouch and less likely to cause butt burn. The lighter the color means it’s passing thru me quicker and therefore more acidic/caustic, and more butt burn. HTH [ more ]
Derrick Works for me! Yea it takes about 5-6 hours between bowel movements from eating to start passing or more. The consistency is great so glad that doesn’t determine much! [ more ]
Scott F I don’t think there’s much useful information in stool color from a J-pouch. It often looks rather like the food we’ve eaten, and even when it doesn’t it’s generally not worth your attention. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post takedown Incontinence issues
P Philly
Philly Much appreciated New577 and Scott F Everyone really came through with these replies and suggestions. I’m elated to be part of this community and look forward to offering my experiences and advice to new pouchers like myself I just got the enema supplies, so we’ll see how it goes lol. I’m willing to do anything that will help! Thanks again y’all! [ more ]
Scott F The easiest way to do a warm tap water enema is to buy a brand-name Fleet enema, empty out the irritating solution, and replace it with warm tap water. I've only done this as a prep for pouchoscopy, but as New577 wrote it won't do any harm with moderate use. [ more ]
New577 My surgeon recommended warm tap water enemas early on for other reasons. They helped empty me out when I took too much Imodium and it constipated me. So I would say it’s something that cannot hurt you and worth trying. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Need new GI Chicago area
clz81clz81
samwold I see a colorectal surgeon named Scott Strong with Northwestern Medicine downtown. He is fantastic! [ more ]
Mary O I liked Laura Yun MD at Northwestern. I moved out of the area last year, but if I were still in Chicago, I'd still be seeing her. I do not have chronic pouchitis but have a myriad of other issues. She was very helpful. [ more ]
Nicholas I’m with Dr. Hanauer at Northwestern. He was originally at UC, but when he moved to NW, I followed him there. I also have a j pouch with chronic pouchitis. [ more ]
See all 3 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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