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J-Pouch ForumsGeneral Discussion
Groundbreaking Study to Treat IBD: use of Sacral Nerve Stimulation
J jan15
Pouchomarx so I have a redone jpouch since 2015 but have some minor incontinence. My GI at Cleveland Clinic wants me to see a DR Anna Spivak there who is doing a similar device for leakage . I havent made an appt yet but very curious . [ more ]
lholdem Hi all, I’m at about the 2-month mark. The research liaison said patients tend to notice results around 3 months, and clinically they tend to see results around 6 months. For me, I wouldn’t say my BMs were out of control, but my doctor was concerned about the amount of inflammation seen during my scope. So I have maybe noticed a marginal improvement, but there’s various lifestyle/diet/supplement changes I can do to affect that too. It has certainly not gotten any worse. One encouraging... [ more ]
Sarita ❤️
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J-Pouch ForumsGeneral Discussion
Vitamin B
C Cooziejpouch
Cooziejpouch Thanks for your response Scott. Good advice thankyou. [ more ]
Scott F J-pouchers do not normally become deficient in the various B vitamins. There is some risk of Vitamin B12 deficiency, but if that’s advanced enough to cause anemia (and thus low energy) then it’s pretty easy to detect with a simple blood test. It’s best to work out the actual cause of the problem before planning on the solution. [ more ]
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J-Pouch ForumsPouchitis
Medical marijuana
AngiebAngieb
Jfill21 I’m with you PSJ and these days I don’t hesitate to tell all my docs. I have yet to be told anything negative except to know where it’s coming from. In my case a retired RN grows it to help those in need and it’s legal here in Va. [ more ]
PSJ Fun debate here! Personally I quit that stuff years ago until I got UC. I was on about 40 pills a day at one point, you want to talk about evil? Big Pharma is Evil. The side effects of Prednisone alone (which I bet we ALL have had) took YEARS to get over. One day I had enough (pre-surgery) and decided to try MJ. My wife was none too happy about it either at the time. What it gave me was 2-4 hours of peace in a 24/7 cycle of pain and discomfort. It gave me an appetite when my body was losing... [ more ]
CTBarrister FYI this is the edible cannabis product my sister is using for her sleeping issues, which she recommends. She lives in California where marijuana is 100% legal so she doesn't need a scrip for it: https://www.kivaconfections.co...avor/saigon-cinnamon [ more ]
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J-Pouch ForumsK-Pouch Korner
Continent Ileostomy WOC Nurse Questions/Feedback
E ET_RN
skn69 A little addendum to my previous post: Some of the things that we never tell Continent pouchers: 1. your stoma is part of your body, it is not made of artificial tissue, therefore it will react to everything you eat or do. 2. If you are dehydrated your stoma will shrink. It will get tight and difficult to intubate. Use more lube. It may even crack and bleed. As long as it is just a few drops of blood, you should be ok. 3. Your stoma will react to your meds. If you take antihistamines... [ more ]
skn69 Thank you for taking the time to ask, ET_RN, I'm one of the oldies here. Almost 45yrs with my K pouch and still learning. I also took the incredibly stupid plunge and moved to Paris 40yrs ago, where no one even knew what a K pouch was. The only surgeon who I ever met who had done one, 'didn't believe in them' and tried to remove mine at every turn. I was number 13 on my surgeon's list of Kock pouches made. That said, he had a fantastic team and a great stomatherapist. She sat with me, showed... [ more ]
skn69 ❤️
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J-Pouch ForumsK-Pouch Korner
Doctors knowledgeable about k pouch in Europe
D Db20
skn69 Hi DB20, how can I help you? What do you need to know? What medical info can I give you? I have lived in Paris for over 40yrs now and have a good network if you need it. Just PM me. Sharon [ more ]
Db20 Thank you. [ more ]
BillV The best one that I know of is Dr. Gabriela Möslein 47053 Duisburg, Germany 49 152 0203 6008 0 You might also want to join the Poucher Lifestyle Facebook group that is hosted by Sharon Neuman Cochrun who lives in Paris. [ more ]
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J-Pouch ForumsGeneral Discussion
Gas Problem or Pouchitis?
D Derrick
Sarita My Gi told me I can have a gas x with every meal, in addition, he recommended going gluten-free; even though I don't have an allergy or intolerance, it seems I can have sensitivity to gluten. [ more ]
Derrick My gas has to be from food I am eating. I stayed away from sugars and didn’t didn’t have any spaghetti sauce and I hardly had any. I may just be more sensitive to things. I have done gas-x which helps. I don’t really get gas pain, I just can feel the pressure slowly working it’s way down and it creates the need to go because I have a hard time expelling it and it drives me nuts. [ more ]
Scott F It sounds like you may be overshooting on the dosing. Maybe pick either the Imodium or the Citrucel and gradually adjust the dose by small amounts until you’ve gotten it as good as you can, and then (only if necessary) add one (not two!) Imodium for a while and see how that goes. You’ll get some variation in stool consistency, but it may be best not to worry about that unless it’s causing you a problem. Have you tried anything for the gas yet, or discussed it with your doctor? [ more ]
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J-Pouch ForumsGeneral Discussion
Castor Oil
SaritaSarita
Sarita Thank you all for your feedback! [ more ]
roseviolet I would never use castor oil. Was told to take it for colon exam clean-out 40 yrs. ago and it nearly killed me. It cleaned me out for the exam and kept on cleaning me out. Major dehydration requiring an 11-day hospital stay. Was told never to use that again for any reason. Note to YT: Cod liver oil is not the same as castor oil. [ more ]
ytcrockpot I have a friend that takes a teaspoon of Cod Liver Oil every day, started when he was a kid & now in his 60’s. Doesn’t have any joint pain. probably should ask your doctor before taking any [ more ]
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J-Pouch ForumsK-Pouch Korner
Dr.Dietz
B BethW
jan15 beth w--how was consult with dr dietz ? decision? are you now a k-poucher, in our korner? humor essential. jlh [ more ]
Kim S Just the dates and the Cleveland location: Sept 19, 20 and 21 of 2024 the conference committee will be planning. [ more ]
jan15 Kim – thanks for that information. Is there any written information from the conference? Beth– I had a failed J-pouch. [ more ]
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J-Pouch ForumsMen's Health
Being gay with a j-pouch
L LIGuy11
Nuhorn This may need a new thread, but(t), any suggestions on plugs that work well, especially good sizes to start with? The array I see out there is pretty dizzying and some seem too advanced for beginners. [ more ]
LIGuy11 Yeah, one would think in a day and age when penises can be made into vaginas and vice-versa that we could at least figure out a way for those of us who are gay to have intercourse with a j-pouch. I guess there aren't enough of us to warrant any research into this... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Back to Back
C capper
capper I seemed to catch a bug or virus of sorts that has caused the chills, muscle aches, and a bad headache. The headache is gone now but the others symptoms are still lingering some. I have tried to rest and get as much sleep as possible over the last couple of days. In order to help with that, I have taken some muscle relaxants that I had been prescribed previously. It has a tendency to really knock me out. Typically, the longer I sleep, the better I feel but the more difficulty I have with my... [ more ]
CTBarrister Your MRI report doesn't look normal to me especially at the L3-4 level. But I am not a doctor. It's your call but I would go to hospital, get the Toridol shot, and request a referral to a neurosurgeon. Wait if you can take the pain. Do not wait if you can't. See a neurosurgeon one way or the other. Good luck. [ more ]
Sara Marie Arnica & CBD icy hot spray or cream and a hot pad is what I might try. Someone might say ice is good for something like this. I'd do whatever feels better to you. Maybe those treatments paired with some acetaminophen? Most people on this forum (and their doctors) seem to agree that NSAIDs can trigger bad responses from the pouch. After the pain decreases, Iyengar yoga might help if you can find a good, experienced teacher. I can't vouch for other types of yoga. If the pain is too bad,... [ more ]
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J-Pouch ForumsGeneral Discussion
Getting depressed about my ongoing anemia
R RB15
R227 Thanks for getting back to me RB15, much appreciated. Sorry to hear you're still experiencing anaemia issues, I'm sure it's really exhausting constantly having to have infusions like that. Especially if you're not feeling much benefit from them. I hope your anaemia improves, and that the crohns gets under control too. My anaemia has improved in the last four months - but the only thing different is that I completely gave up alcohol. I can't think of anything else that's changed in that time,... [ more ]
RB15 Hi R227, sorry for the delay in replying, i missed the email notification. So since that post i got diagnosed with Crohn’s disease unfortunately, so i guess that could certainly be a factor to the anemia as i was losing blood too. However, i have been on Stelara now for 8 months and it is working well to the point that i bleed seldomly now, but still have the same rate of anemia. Which leaves me to believe that maybe it has been an absorption issue all along, maybe due to the Crohn’s or the... [ more ]
Drbev603 ❤️
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J-Pouch ForumsGeneral Discussion
Use of Tylenol with J-pouch
B Bill264
Scott F Tylenol is fine with a J-pouch. A regular dose of 650 mg is likely to work better than 500 mg for most folks - I just take 1000 mg (an extra strength dose). Tylenol is generally only a problem if you have liver disease or drink appreciable amounts of alcohol. [ more ]
New577 i take Tylenol 500mg whenever I need for aches and pains. No issues with pouch ever. i have avoided Nasids before surgery and really avoid them with the pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy
E Enterin
New577 20+ years ago, i used have sigmoidoscopies performed in the GI office. Those days are long gone. They opened an endoscopy center and started to collect the big $$$. Besides if they are going to offer anesthesia services, they need anthologist/nurse anesthetists in the building. It turns out, that if the GI is not snaking up past the pouch inlet , we really don't need any sedation. Ahh, the good old days. [ more ]
ytcrockpot Yes, insurance does not allow docs to do it in the office any longer. Probably cause insurance makes more money this way. [ more ]
Indy_Dave Hi, i am having a scope with a new doc in a new state friday...stinks that my old doc (my surgeon) could do it in his office...this time i have to go to surgery center, 2000 bill (300 is my part) instead of 25 copay...do y'all have to go to surgery center or do it in the office? 2 fleet enemas, clear liquids for prep..3-5 minutes of not having fun is what the scope used to take....🤪 [ more ]
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J-Pouch ForumsPouchitis
Terrible gas
CG copper girl
Maverick Plus I had SIBO. 2 months of doxycycline cleared it up. [ more ]
New577 I suspect that pouchitis, Cuffitis and SIBO all have some similar symptoms. As to your question, what stands out, is the very watery BMs that occur one after another with no solid type ones. It just stays as a watery mess, with nasty smelly gas. No blood is present. Frequency and urgency occur to some degree but not as bad as the others. eating lots of simple carbs (SUGAR!!) will definitely put me at risk for a bout of it. it does not deter me, because it’s my one remaining food pleasure in... [ more ]
van My GI doesn’t talk about SIBO. Do you get increased bowel motions or abdominal pain? . How do you tell between pouchitis vs SIBO. [ more ]
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J-Pouch ForumsGeneral Discussion
Gas and Diarrhea
AK Andy Knapp
Scott F I suspect all of us experience this to some degree, and it’s very annoying. There are a number of things that can help with the mess, some more involved than others. Some of the high-end bidets (e.g. Toto Washlet) spray the bowl with water as you walk up to it. This reduces the mess sticking to the bowl. A few folks here have said they now hand spray the bowl before sitting down, which is much cheaper than a Washlet. If you’re ready to buy a new toilet two features can make a difference. The... [ more ]
New577 I experience this frequently. While I take Gasx three times a day to lessen the explosive gas affects, my frequent experience is that I have a messy toilet bowl and a messy butt that takes extra time to clean up. i wish it was not so, but this the reality of my life with the pouch. [ more ]
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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 ForumsPouchitis
Entyvio
Y ytcrockpot
DJ H When I started Entyvio, I was still in the down dosing stage of budesonide. As you said, budesonide was like a miracle drug for me too, works better than anything else I'd ever had for pouch issues. The jury is still out for me on Entyvio since my initial results were great but that was potentially the budesonide effects still so I'll need more time before I can say for sure on the Entyvio by itself. It would be nice to hear from others as well. Good luck. [ more ]
Nikino Hi, I just heard about Entyvio from my GI doc last week. She suggested I reasearch to figure out if I’m interested in trying as she mentioned several studies claim to indicate it helps with with cuffitis. I have intermittent cuffitis issues a several times a year. I appreciate your feedback on the medicine and interested to see how things go for you, if you continue with it. She has prescribe me with Canada suppositories for now until my MRI results are in. I’m having a hard time keeping the... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis
HE herb ear
CTBarrister It can come back and stay in a low grade condition for a while with minimal or no symptoms. Many of us have trouble clearing it and some people get scoped and don't know they have pouchitis until it shows on scope. You may need to be on antibiotics for more than 10 days to clear it, and it could come back. You might want to go for annual scopes and keep an eye on it so it doesn't get out of control. [ more ]
herb ear Think you may be right. Can it take a month to clear pouchitis? You guys have so much knowledge, appreciate it. [ more ]
CTBarrister I think your premise is inaccurate. You have had pouchitis all along, it's not been treated and it's slowly gotten worse. That's why you have the symptoms you have now. [ more ]
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J-Pouch ForumsGeneral Discussion
What's Going on?
C capper
capper Flagyl and Cipro never helped me in the past. Like mentioned in thos thread, it may have made it worse! Not a good feeling swallowing those big pills when they didn't help at all. [ more ]
Pouchomarx TRUE, yeah I had Cdiff after my takedown of my first pouch and that was awful [ more ]
Mysticobra I know I may sound ridiculous. It could be what was mentioned. But you mentioned stress. Personal stuff. That's stressful. Although I had uc all my stress manifested itself to my gut and made it act as it did. In hindsight I know that now. It made my colon and pouch go bonkers. Now that both are gone I had a perfect example of it last night. Stress. I had an episode of being stressed. I could feel it in my stomach. Yes. I can tell the difference now. Had I had either colon or pouch now it... [ more ]
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J-Pouch ForumsPouchitis
Cleveland Clinic docter recommendation
M MJFMJF
JayStahnke Donna- such great doctors in St. Louis! The Washington University GI clinic has been my “home away from home” since I was 18. Unfortunately, the surgeon who did my JPouch (1998) and small bowel resection (2010) moved onto UC health in Denver several years ago. But I get such great care…haven’t needed surgery since 2010, but the GIs are so responsive- my needs are always met - which anything GI related needs fast attention. [ more ]
Donna klable Any pouch Doctors in St Louis, Mo? [ more ]
katenet I can say you are in great hands! She’s very smart and also kind hope you get to feeling better soon Kate [ 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 ForumsGeneral Discussion
New Drugs?
temotytemoty
temoty thank you....I'm on Stelara. My only complaint has been skin infections sometimes. Here is link: https://www.mountsinai.org/abo...r-ulcerative-colitis [ more ]
ytcrockpot The link doesn’t work. I've been searching for new meds for 42yrs, I’ve only found steroids or biologics. I tried stelara last year didn’t like it. I’m on Entyvio now, makes me extremely fatigued. Hoping for better results soon. [ 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 ForumsGeneral Discussion
pouch back to ileostomy advice
H helena
Robbiusd Hi. Just wanted to post and update on here. I am booked in tomorrow to have a permanent stoma and disconnect my jpouch. Turns out I have very stubborn inflammation that antibiotics won’t control and I’m not prepared to cycle the NHS treatment list hoping something works. @helena I hope you are getting on better with yours or you have been able to get your situation on the right track!?! [ more ]
New577 I firmly believe that once you fix/repair any mechanical issues you will be in a better position to manage your pouch to a satisfactory state. I think your surgeon’s approach is reasonable; as to let’s not give up on the pouch at this point in time. [ more ]
Robbiusd So I saw my surgeon today…. He didn’t want to discuss the possibility of a reversal yet as he believes the problems I am having are due to bacterial overgrowth because I have a fistula where my small intestine was joined back together going to my old stoma site wound. This apparently can cause mild pouch inflammation and an increase in frequency and urgency. I am booked for CT to gauge the size and route of the fistula and will no doubt require bowel resection to remove it. After that if... [ 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 ForumsGeneral Discussion
Are iron infusions gentler on the GI tract?
K Kushami
roseviolet A note on intravenous NSAIDS, including Ketorolac. They can indeed cause G.I. ulcers. [ more ]
str8pipe I am late to the thread, but I saw this and had to comment. I have suffered from iron deficiency anemia the last few years of my j-pouch life, and iron pills crush my stomach, so that is not an option to resolve it. I also attempted to eat chicken livers daily, as well as an assortment of other iron rich foods, but unfortunately, my body does not absorb iron as well as it used to. A couple of years ago I received my first iron infusion (Feraheme) and it most definitely improved my situation. [ more ]
Kushami Thanks everyone for the comments and suggestions. Sorry I haven’t responded to them all. I am reading them all. Still working on the iron levels. I have a lot of things wrong with me at the moment and it’s hard to get them all sorted. [ 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 ForumsPouchitis
Juicing to help Pouchitis
Beth-Jpouch1991Beth-Jpouch1991
Sara Marie That reminds me that I need to make some carrot/celery juice, which makes my spleen so happy. I also save the pulp and put it in chicken soup or some other food. The pulp is great. My guts prefer it to be cooked. When I have items cooked with veggie pulp from my juicing, I have better poops. I'm not sure about juicing for pouchitis. I'm more of a preventative type person. When I feel the inflammation and have the night seeps, I take some oregano oil (in capsules) and some probiotics and try... [ more ]
Sara Marie ❤️
Jmakled I have heard amazing things about juicing cabbage. I bought my juicer and plan to start. Learned of this from another J-pouch group member [ 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 ForumsK-Pouch Korner
K pouch help!
J Jenny22
skn69 Hi, I've had my K pouch for 45 yrs now (yikes!) and have had different periods in my life where my diets has varied. Firstly, your best friend, at least for the 1st year, will be an immersion blender. The hand-held kind that allows you to blend anything you like into a purée or a soup. It chops up chunks and breaks down fibers. Depending on the condition of my pouch at the time, I have just turned my fruit salads into smoothies and my vegetable soups into creamed soups (without the cream!). [ more ]
Kim S Next year’s QLA conference will be in Cleveland Ohio. The hotels have become very expensive for our conference’s so the organization is trying something new for 2024 and Dr’s Dietz and Miller-Ocuin have offered use of University Hospital’s conference services. There is a hotel across the street from the hospital where folks will be staying. [ more ]
Kushami ❤️
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J-Pouch ForumsGeneral Discussion
sudden seepage
J jaz
Kushami ❤️
jaz Thanks. My surgeon didn’t think it was pouchitis but I guess we’ll see if things improve. Thank you. [ more ]
Scott F When I start to get seepage it seems to be a sign of pouchitis. I suppose the lidocaine + successful pelvic floor PT might have relaxed things a bit and reduced the sensation of exiting material. [ more ]
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J-Pouch ForumsGeneral Discussion
Backpacking with a jpouch
A Alexwin
8petallotus Hey everyone! I am new here and stumbled across this post when trying to Google wag bags and j pouches. I just started backpacking this summer and some of the trails I am looking at require wag bags, which is fine but I am not sure how to use them with a pouch. Also with water treatments what does everyone use? I have been using the drops but think they mess up my system a bit (or it could be dehydrated food) I really want to get good enough to do a thru hike eventually but I am concerned... [ more ]
girlunky Ha ha Scott, I totally agree! I scrape a nice big hole, then balance in a deep squat that positions my feet out of the way. Then, like a fox (or dog), I have to bury it. Also it helps to have an extra squirty water bottle, you can get a good rinse. I also find that a nice coating of vaseline before I leave helps with avoiding skin damage, aka butt burn. [ more ]
maddie18 ❤️
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J-Pouch ForumsGeneral Discussion
stomach pain - passed from doc to doc
B Bubbapup
Kushami ❤️
Jaypea If you are really worried about an ulcer you could ask for an H pylori breath test. It's easy and non-invasive. If that is negative then move on to a more detailed discussion with your surgeon. In my opinion it sounds like the angle of your intestine is causing some kind of obstructive symptoms. Ulcer pain doesn't generally make you vomit but an obstruction sure will. Changing your diet to mashed up foods with low fibre may help to see if you can alleviate some of the symptoms may provide... [ more ]
Scott F Once you’ve thought through the impact of the problem on your life then a frank conversation about the options, risks, and benefits with your surgeon is a good idea. No one wants another surgery, of course. [ more ]
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J-Pouch ForumsGeneral Discussion
Partial or full obstruction
B Bubbapup
Bubbapup I eventually went to the hospital and they didn't find anything! It must have cleared or maybe I didn't have one. All that work-up for nothing. I feel so defeated. I'm still having pretty severe stomach pain (going 10x+ per day so that's back to normal). [ more ]
Scott F Usually once an obstruction has you vomiting it's time to get medical help, but generally it would start hurting before vomiting if backed up intestinal contents had caused the vomiting. In any case, if you can't keep fluids down you're on the clock, and will need IV fluids before too long. If your pee gets dark then you're getting dehydrated. [ 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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Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

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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This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

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Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


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396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

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