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J-Pouch ForumsGeneral Discussion
Finasteride for BPH
AP Al P
Al P Hello Scott. Thanks for your reply, you’ve always been so helpful. My adversion to pharmaceuticals mostly prompts me to ask. I was also wonder if anybody out there in the community has taken this pharmaceutical. Many years of prednisone for UC has made me question the judgement of doctors regarding my body Al [ more ]
Scott F I looked it up and don’t see anything that might affect a J-pouch. Do you have a specific concern? [ more ]
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J-Pouch ForumsGeneral Discussion
Diarrhoea with no other symptoms
K Kushami
Scott F I’m glad you’re feeling better. It could easily have been something like a viral infection, which can clear up on its own. Some medications that can cause diarrhea might not have that effect on J-pouchers. If the mechanism of action is an effect on the colon, we might be effectively “immune” to that side effect. It’s hard to tell, of course, since most side effects happen to just a fraction of users anyway. Good luck! [ more ]
Kushami Update: It went away before I could see my doctor to arrange a stool sample. Happy it’s gone, but I now have no excuse not to start the medication my new doctor prescribed me … which gives most people who take it diarrhoea as a side effect. In fact, it’s so well known for this side effect that some people with motility problems take it to get things moving. (It’s Mestinon, if anyone is wondering. I’m trying it for orthostatic intolerance / autonomic dysfunction.) Oh joy! [ more ]
Kushami I just remembered that I took a 5-day course of prednisolone about three weeks ago. (It was a low dose only.) I don’t remember having the diarrhoea while I was taking it but to be honest I’m in such a state these days that I can’t be sure. It was for bad allergic itching and I was so darned relieved that the itching had stopped that I can’t remember anything else. I must start keeping a medical diary. Will get tested for bugs anyway! [ more ]
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J-Pouch ForumsGeneral Discussion
Hip Replacement on October 10th.
BS Ben S.
Ben S. Thank you for asking. I'm doing well. Trying to take it easy but that is difficult for me because I'm an active person. J-Pouch is fine. I'm healing according to the timeline set forth by the doctor. Also, I have the Boss (my Wife) watching to make sure I don't do anything to jeopardize the surgery. So no biking, hiking, skiing, or rock and ice climbing for a while. But we'll see about that [ more ]
Former Member How are you doing??? [ more ]
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J-Pouch ForumsGeneral Discussion
Pain
MirsiMirsi
Mirsi Hi Duck11. The pain feels all over. Although I believe the worst of the pain seems to lower a bit everyday. It slowly gets better over a few days. My doctor had mentioned a few possibilities including adhesions. I am having a CT on Friday. Hopefully we will see something, although I'm not in pain right now. Isn't that always how these things work! Thanks. [ more ]
duck11 Is it in the same place every time, or more all over your guts? If the latter, it could be some stricturing from adhesions as fiber can get caught in the narrowing and cause partial blockages that eventually pass like yours. Usually they are fairly painful though, but if it’s just a tiny one might cause just discomfort and some slowing of passage. [ more ]
Mirsi Thank you Sarah Marie and Scott. All great suggestions. I will give them a try. I appreciate it! [ more ]
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J-Pouch ForumsGeneral Discussion
Ilex alternative?
lovethatgreylovethatgrey
Pouchomarx had my first pouch done in 2008 and redo in 2015 ....i have tried it all.. [ more ]
lovethatgrey Hi everyone, Thanks so much for your replies. RHolt and Bubba1028 - I will order both products for hubby- hopefully one will be a good alternative. Pouchomarx - My husband uses Metamucil in the evening 1-2 hours after dinner which helps him a lot. Have you tried using Metamucil or something similar (Benefiber, Banatrol, etc.)? He's tried the Benfiber and Banatrol but they didn't work for him. Good luck. [ more ]
Bubba1028 Coloplast clear moister barrier cream does a good job. You can buy a two pack on Amazon for $30. [ more ]
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J-Pouch ForumsGeneral Discussion
Going Number 1 and 2
lovethatgreylovethatgrey
Mysticobra When I had my pouch I figured while I'm there I may as well. Now the funny thing is I no longer have it. I have an ileo. I go in to empty and pee. But I get busy with the empty and just forget to pee. Lol. So I have to go back. I guess. I know forgetfulness come with age. But this? Really Hahaha.. Weird. I know. But that's "me". Richard [ more ]
PouchLogic Sometimes it can be difficult especially if I really need to do one or the other. Tell him to keep practicing and do his kegels it will make a difference. [ more ]
New577 For the first 8-12 months I could not separate the two. I had to sit for pee because a poop was right after. It was very frustrating. Sometime during the 8-12 month mark I started being able to pee without pooping most of the time; although if the pouch is full enough I’ll just sit down and do both. But I will admit I was skeptical that I would ever attain this ability. I will take the win at this point. [ more ]
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J-Pouch ForumsGeneral Discussion
Arthritis related IBD - (inflammation)
BM boy's mom
Jan Dollar Osteoarthritis generally affects the middle and distal joints in the fingers. If your knuckle joints are affected, it points to inflammatory arthritis, like RA or spondylitis. Spondylosis is not related to spondylitis. But, regardless, your rheumy will sort it out. Good luck. Jan [ more ]
Pouchomarx I have had lower back pain on and off for a few years. I went to pain mgmt 2 years ago and they ended up doing MRI. showed I had disc degeneration of L4 and L5. Stated it did not show AS, but spondylosis. And some minor arthritis in neck. Did PT for a few months and I see chiropractor 2 times a month and my back has been good. Knock on wood. Worst part is my fingers. Middle joint on middle finger was really sore and doc injected it but X-ray showed inflammation. It felt good for a few. Weeks... [ more ]
Pouch2021 Agree with Jan. Would not assume you have RA particularly given the chronicity you’re describing (history of injections in the past). OA is by far the most common type of chronic joint pain. If inflammatory (not OA), there are many types of immune mediated arthritis, including those that don’t fit neatly into any classification schema. Also you can have seronegative RA, meaning negative RF and CCP, so there won’t be any one specific lab to diagnose or rule out disease. All of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Physillum POWDER
J Jpouchlolly
Jpouchlolly I’m not at home but it’s the Vanilla plant protein from Costco. Lunch might be egg on toast, tuna in a wrap, homemade soup, Dinner is meat , a starch, salad or veg. Pretty normal stuff. I try and finish dinner by 6 pm, nothing in the evening. I just throw the black sesame powder in because I looked it up and it’s good for you. Lol [ more ]
Sara Marie Hey Lolly, What kind of plant protein do you use in your shake? Does black sunflower seed powder have particular health benefits? I agree, keeping healthy with a j-pouch is a full time job. I'm curious about what you mean by lunch and dinner being normal. What is normal? [ more ]
Mary O ❤️
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J-Pouch ForumsGeneral Discussion
10 weeks J pouch post op
PD Phil D!
Asa Lay It takes time for your new colon setup to start working. Your small intestine is not used to being in charge. Scott is right. Try not to go when you feel you have to go. This will help the new pouch to expand. Also how much are you eating? Are eating or snacking at night? For 58 years I ate what I wanted when I wanted, but after surgery, I had re-train myself to eat differently. Be sure to eat about 5 small meals and try avoiding eating large meals. My nurse told me when I was having a... [ more ]
Scott F People get different advice about this from their doctors (and sometimes get no advice at all). The advice I got was to gradually (and gently) begin to delay bathroom trips to “stretch the pouch.” For most of us the delay is mildly uncomfortable - agony or accidents are not a normal part of this process. So what happens if you don’t obey the signal you’re currently using as your cue to go to the bathroom? Formed stool isn’t optimal for most J-pouchers. Some do just fine with it, but for many... [ more ]
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J-Pouch ForumsGeneral Discussion
Nightmare at NYU
KennyJG44KennyJG44
athena Hi Kenny, I’m so sorry you’ve been dealing with this, and the lousy care in the ER (which is not uncommon—they can treat heart attacks and strokes, but this stuff is kind of specialized.) Cuffitis sucks. I had it for four and a half years, finally had a pouch revision that got rid of that tissue so that I didn’t get cancer—but that injured my internal sphincter, which is no fun to live with. I couldn’t get the suppositories in that they wanted me to treat with, it was so inflamed when I had... [ more ]
Maverick Plus Good to know that you finally got answers. Do you have a new GI doc now? That would be of great help to you in the future. [ more ]
KennyJG44 Hi @SadieM1210 - Apologies - probably published results on another thread. Scope showed moderate pouchitis, which I've had in the past. But more importantly, showed an acute cuffitis, which I've never had in my 20 years since surgery. Definitely gave me a new set of symptoms. Flagyl helped clear that up - though I feel like I"m still dealing with residual inflammation of pouch/cuff. [ more ]
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J-Pouch ForumsGeneral Discussion
Any Advice on Eggs?
JS julie s
seagull I am in the same boat as Julie S .... would love to hear if anyone has figured out how to balance eggs with something to counteract the side effects! [ more ]
Chook2 I eat alot of eggs but maybe it's the type your using and storage of them. I use free range eggs and refrigerate them and use within a week,and two at a time. [ more ]
Scott F I don’t think Beano is likely to help with eggs - Beano is a specific enzyme that helps digest a single molecule that causes gas, found in things like broccoli and cabbage. I’m pretty sure there’s no alpha-galactoside in eggs. [ more ]
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J-Pouch ForumsGeneral Discussion
Inflectra
K kjcole
SadieM1210 @kjcole I started on Inflectra and did just fine. No side effects, no issues with the infusion. The pain you are talking about sounds like you might have a stricture. After I started my infusions that pain went away. I hope it works out for you. [ more ]
Sara Marie I didn't know about the 20 year Crohn's thing. What's the logic behind that? Can you provide me with a link to that information? I googled but did not find. Thank you! [ more ]
kjcole Sara, I did have UC about 20 years ago and Mayo Clinic does say that about 20 years out you may find out you have Crohn's. They also say it isn't hereditary but my mom and her brother also have Crohn's plus other family members have UC and Crohn's. Just wanted to know if anyone has had any issues with inflectra. I usually don't experience side effects from meds. They wanted to start me o. Humira but insurance won't approve it. They wanted me to start back on prednisone and other traditional... [ more ]
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J-Pouch ForumsGeneral Discussion
Leakage
OP Oh Poo
SadieM1210 I had no idea there was such a thing as anal tampons. That just sounds uncomfortable plus I'm sure they'll be useless if you have incontinence? [ more ]
Nebula At night I had to use urinary and incontinence pads.. I also put a towel and chuxs on my side of the bed To protect the mattress. During the day I wear a thong pad [ more ]
kathy smith I once tried OB tampons but they were uncomfortable. They're pretty small before they expand so I figured they'd be alright. But maybe others have had better luck with them. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis
GEB56GEB56
GEB56 Thanks. I use psyllium powder three times a day and think it is a great product. Gives my stool some form/bulk. [ more ]
Jpouchlolly Sorry to hear your really struggling, please read Physillum Powder. Maybe that might help you. jpouchlolly [ more ]
GEB56 Hi AMB. Sad you have had simar issues, but feel better that I. Not alone in my battle. I will be picking up Hydrocortisone suppositories today at local compound pharmacy and will let you know how that goes. In the meantime, I am partially improved on Augmentin. Thanks for your reply to my post. Much appreciated. [ more ]
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J-Pouch ForumsGeneral Discussion
How to stop clenching
A Andreita
Former Member How are you Andrieta??? Are you okay??? [ more ]
Li__ I highly recommend seeing a pelvic floor therapist! I saw one for this exact problem and it changed everything. She worked on strengthening my pelvic floor muscles and gave me home exercises to do if any issues arise. You do have to put in the work, but it is completely worth it in the end. The exercises still help me to this day! [ more ]
Andreita Not yet I need to make an appointment with my surgeon or GP. [ more ]
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J-Pouch ForumsGeneral Discussion
Second j pouch?
duck11duck11
AmyH Hi! I just got my second J-pouch in September. I have a temporary ileostomy right now while it heals. Long story short, I went to Cleveland Clinic for a second opinion after having my takedown on 7/12/22 I suffered with lots of pain, unable to empty, blood and burning. I was told it was pouchitis. When I got to Cleveland Clinic, they realized my j-pouch was twisted 360 degrees and was leaking. I had open surgery to remove my current J-pouch, make a new one and now have a temporary double... [ more ]
Fight like a girl As far as surgeons go, dies anyone have experience with ccf dr Scott steele at Cleveland? I too am now considering removing j pouch. My best surgeon out at ccf retired. Any info would be greatly appreciated. & best wishes on your decision too. Thank you. [ more ]
David W Nothing wrong with exploring your options. Good luck with making this difficult decision. [ more ]
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J-Pouch ForumsGeneral Discussion
My coccyx hurts
P Pouch2021
Sara Marie I hear that. I never really know what's going on with the pouch. Maybe one day I'll get a pouchoscopy if I find a doctor in my area that specializes in J-pouches. I don't want some beginner poking around in there. [ more ]
Pouch2021 Sara Marie, Most sinus tracts are at the anastomosis where the pouch is stapled/sewn to the anal canal, though you can get them at other suture lines. Mine was discovered almost immediately after takedown as I had serial imaging to monitor unrelated pelvic abscesses that occurred after stage 2. Yes, the sinus tract was the cause of the bone infection. My surgeon did the usual pouchogram with contrast prior to takedown to make sure there were no leaks but that study didn’t catch it. I was... [ more ]
tf You learn something new all the time here. That's what I love about this site. I never heard of this sinus issue. Thx! [ more ]
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J-Pouch ForumsGeneral Discussion
Really strange...scab/irritation covering waistline incision site from 2005?!
samwoldsamwold
girlt Maybe your scarred area is at least partially numb and you didn’t feel the soreness until it spread a little onto area that does have more or normal feeling? I don’t know what size your laparoscopic scar/s are/is, because I had traditional long surgical scar, and the entire scar had no feeling at all for a very long time. Some of it still doesn’t. [ more ]
RHolt Hi Samwold, I have not had this --but I didn't have a laparoscopy (was your entire colon removed by this method? I have heard of that). I think you might be onto something by saying that it is at your waistline and perhaps your pants were rubbing against it. The chafing could have irritated the scar and ultimately caused the scab. It is odd, though, that this is the first time it has happened since 2005. How weird! Did something change? Tighter pant waistline? Extremely hot weather? I hope... [ more ]
samwold Thanks, Steve. I looked it up, and it looked nothing like that. It basically just looked like a scab you would have after you you cut/scrape your skin. It just ran along my waistline. It seems like it is feeling better after the scab was removed by the doctor and some ointment was applied. [ more ]
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J-Pouch ForumsGeneral Discussion
8 YEAR PROCTOCOLECTOMY ANNIVERSARY COMING UP! ANY QUESTIONS???
FM Former Member
Former Member So I never had problems with leakage too much unless I was napping or sleeping overnight. I was able to stop wearing diapers after close to a year. I got to hours of holding poop in after 3 months I think. [ more ]
Eric in Seattle When are you able to leave the house with just an underwear liner but not a diaper? And how long did it take you to get to hours? I ask because I'm headed back to the office. There are only 2 private bathrooms for 100 people! [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium
B Bubba1028
jannyg I did the same, I could buy the generic at Sam’s Club & get two 200 tab bottles for round $5-6.00, until some idiots had start using it for “other” reasons, and they took off their shelves. Now I end up ordering it on eBay from the east coast for triple the price. I normally take 6 to 8 per day, been trying to wean myself down to 6 per day. Very frustrating! [ more ]
AnthonyA I see on Amazon UK it is £4.74 for 48 tabs, so the max 8 a day would be £25 a month. I would be tempted to speak to individual independent pharmacies to see if they can do you a bulk price to get it cheaper. At an online chemist in UK, 60 tabs for £4.99. https://ayp.healthcare/60-lope...amp;description=true Maybe if the market is sewn up in the US, try abroad perhaps. [ more ]
Bubba1028 The generic Imodium is what I’m talking about- loperamide. Sorry. I should clarify. The brand name would be way more expensive. [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic floor therapy
L Lflower1991
Nebula I am starting pelvic floor therapy next week. Pelvic Pelvic floor therapy could help everybody especially those of us that have had major abdomial surgery. [ more ]
Kmiller My surgeon recommended pelvic floor therapy and said he does for many of his patients. I learned a lot about strengthening my muscles, how to properly do kegals, breathing exercises, etc. It was worthwhile for me. [ more ]
Eric in Seattle In Seattle there is one PT at Swedish that specializes in this and works closely with the rectal surgeon. Her name is Peg and she is fantastic. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have nutritional deficiencies?
F Fredz
Maverick Plus I take Ferralet. It's an iron supplement by prescription. It's expensive, but I need it because ordinary iron supplements give me stomach problems (and I'm low on iron otherwise). [ more ]
RHolt I have a chronic low ferritin since my J-pouch surgery in 2011. At first we tried iron tablets and I was not able to sustain the ferritin levels doing that , so about 3-4 years ago, we tried iron infusion via IV, which works wonderfully. My GI doctor monitors my ferritin level every 4 months or so. If it is low, I get a transfusion of iron. I have only needed the iron transfusion about once a year, which is good. I didn't know about the low magnesium levels, but interestingly I take... [ more ]
roseviolet Am glad that your chiropractor was able to help you by providing that magnesium tip!! --Rose-- [ more ]
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J-Pouch ForumsGeneral Discussion
Pain around old stoma site
F Fredz
SteveG If it bulges out when the pressure inside increases, for example when doing push-ups or lifting the legs when lying stretched out on the back, then it is likely to be a hernia. A doctor should have a look at it. Mine said that my hernia along way of my center scar is big enough so it won't trouble me. It just looks weird on such occasions when it bulges out. I don't want another surgery with artificial tissue being inserted as long as I don't have problems. But smaller hernia are more... [ more ]
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J-Pouch ForumsGeneral Discussion
Supplements and vitamins
G grateful
Sara Marie ❤️
Sara Marie I seem to absorb powders mixed in liquid the best when it comes to supplements, I think because they get absorbed quickly and I'm a quick transit person. I'm getting some powdered greens just because of that. Not sure it'll do any good but we'll see!! I eat cooked veggies. They seem to digest easier. Raw shoot right through, though less since I've been ingesting the psyllium (powdered of course, in water) before every meal. I don't find much based in science about what the bodies of... [ more ]
grateful Hi Roseviolet, thank you, but I don’t take fruits and vegetables by Balance of Nature. I take Pure by KaraMD. I like them because they combine fruit and vegetables in one capsule. never thought about researching them. Good to know. So I did, at “Best health supplement reviews for informed shoppers”. Everything seems to be in order. They offer a free return policy as well. i really don’t have any issues with my lab work (always in normal range) and I feel pretty good considering I have a... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain & stelara
FL Fight like a girl
ytcrockpot Check out this website, they offer many different ways to get help paying for Stelara while on Medicare https://www.janssencarepath.co...stelara/cost-support [ more ]
Fight like a girl Hi..by any chance is medicare covering the 8 week injections? I was told by medicare that the infusion is medical so it will be covered by after that, stelara injections are considered pharmaceutical drug & and my copay foreach injection would be $4500.00. There is no way I would ever be able to pay every 8 weeks that copay. I, too, have worked and did so much to keep my j pouch...but not sure how much more fight I have. Thank you for your reply & pray the stelara treatments keep you... [ more ]
ytcrockpot Hi, you should be approved for Stelara, I have Medicare and was recently approved for the infusion. I got my infusion through the NYU IBD clinic, they were ones that worked with Medicare to get me approved. I’ve had my pouch for 41yrs, I’ve worked too hard to ever go back to an illeostomty. Good luck, hope you get approved and start feeling better [ more ]
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J-Pouch ForumsGeneral Discussion
37 years with a S-POUCH
DM Don M
Former Member ❤️
Vickie Hi, I have had a S Pouch since 2001. 2 step surgery 2 months apart. My surgery was done in Omaha. no real issues til about 3 yrs ago. Have had 2 blockages since. Changed my diet, drinking more fluids … so far so good. I am 65 yo. My husband and I have been married 41 yrs, no kids, just cats. I was diagnosed with ulcerative colitis in 1999, and failed the medication treatment available at that time. My mom also had ulcerative colitis, diagnosed when she was 52, she had a traditional ileostomy... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have an Ilex paste connections?
PouchomarxPouchomarx
Pouchomarx ILex themselves are sold out of the tubes and the tub. They stated they would not see more in until after Xmas.. ridiculous [ more ]
twinkie I just saw the 8oz jar for $76 on walmart.com, wen I ordered my tubes. The $s r all ovr the place, even $86 4 a jar. [ more ]
Pouchomarx jar is $83.99 on walmart site.. that price is ridiculous.. When Edgepark carried it, they would run through my insurance and i paid like $15. they stopped carrying it like 2 years ago.. [ more ]
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J-Pouch ForumsGeneral Discussion
Ibuprofen
Paul HPaul H
LoveLife Thank you for the clarification [ more ]
roseviolet LoveLife: Tylenol is not an NSAID. It is an analgesic, which means it alleviates pain. You can do a search to confirm this fact. Paul: Be very careful if you choose to use NSAIDS. I was using oral NSAIDS for migraines and they caused bleeding ulcers. Years later, was also given IV NSAIDS by mistake by medical professional and got bleeding ulcers again, this time requiring blood transfusions. You might not be as sensitive to them as I. [ more ]
Scott F Tylenol is not an NSAID. It is a pain reliever but not an anti-inflammatory. There's no pouch-related reason to avoid Tylenol. [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium - what brand?
B Bill0027
grateful Really, never thought about that. i take all supplements (vitamins) in soft gel form, I was told years ago that tablets (especially coated ones) won’t dissolve for a jpoucher. always learning something new. [ more ]
SteveG I try to get a brand with very small tablets as I sometimes had a feeling that the stuff to fill up the capsules causes me digestive issues. [ more ]
roseviolet Check your insurance and pharmacy/mail order for loperamide pricing. Capsules are much, much less expensive than tablets on my plan so I make certain that my provider writes the script for this form of loperamide that costs less. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil
NicholleNicholle
Scott F @jrws I take 500 mg of Cipro and 250 mg of Flagyl, all at bedtime. I was being glib, but the Cipro side effect of greatest concern to me (combination of likelihood and severity) is tendon rupture, and the Flagyl side effect of greatest concern to me is peripheral neuropathy. Luckily I’ve been spared both so far, after 14 years of Cipro and about 7 years of Flagyl. [ more ]
Nicholle I have been trying 1 Tablespoon Metamucil in water before breakfast and dinner and it is working great. Can’t believe it took 19 years to find it😳 Not sure what Konsyl is but I’ll look it up. I too have been taking Cipro for 9-10 years I do once per day unless trouble comes along then I do nicotine patch first then try a second dose of Cipro if the patch doesn’t work but do far so good. My Dr first tried Flagyl but that made me knees seriously wonky, Cipro no….. knock on wood. [ more ]
jrws Scott, thanks for your reply. So glad to hear you are doing well.! Did you mention the "...Tendon Rupture in my peripheral nerves" because you're on Cipro? How many are you taking a day? I thought that's what Cipro can do long-term. I'm on it once a day now, Unless things get worse and then I always go to two. I hope that doesn't happen to me either. I'm going for my first Remicade infusion tomorrow. [ more ]
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J-Pouch ForumsGeneral Discussion
Alcohol
ValenValen
Sara Marie I'm 18 years out and alcohol irritates my guts, especially beer. The least irritating are rice wine and vodka. Gin burns holes through me. I could drink anything when I had a colon (except when UC flared up). My pouch is super picky. My small intestine never wanted to be a colon. [ more ]
grateful I use Aperol even with really good Champagne (which sometimes it too dry for me) and it is delicious. [ more ]
CTBarrister 3 months is not that far out. After a couple of years you should be able to drink most alcohol no problem. Red wine is the only thing that remained a problem for me, due to the tannins. [ more ]
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J-Pouch ForumsGeneral Discussion
Chemo for UC/Crohns????
skn69skn69
skn69 Thanks Lablover, Scott, It's so hard to see her going through this journey...and so unfair...I would like for my experience to be useful but it this case it is not! Any help is greatly appreciated...I will find out but here they use Remicade from what I have heard...As for the Chemo , I know that it is a class of drug and not just one so Yes, I will ask. Thanks [ more ]
Scott F “Chemo” covers a lot of territory, from horrific infusions that can damage the heart to a series of pills that rarely cause much trouble. Can you find out what medications they are planning? Has her hepatitis resolved (partially or completely)? What biologic was she on? They vary a lot, and it’s unlikely, I think, that they would *all* cause hepatitis. I chose the colectomy when I couldn’t get off of steroids and still felt like crap much of the time. Steroids are the one IBD drug class that... [ more ]
lablover I can't add anything..but, hands on her back. Wow [ more ]
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J-Pouch ForumsGeneral Discussion
Free Virtual Pouch Symposium
LizzLizz
Scott F Here’s the final slide I selected from the talks. It spells out the ways 1-, 2-, and 3-stage J-pouch procedures are broken down. Legend TAC: Total Abdominal Colectomy DLI: Diverting Loop Ileostomy IPAA: Ileal Pouch Anal Anastomosis TPC: Total Proctocolectomy [ more ]
Scott F There were three very useful “general interest” slides about pouchitis during this morning’s session. I’ve attached them here for folks who might find them interesting or useful. [ more ]
grandmaof1 ❤️
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J-Pouch ForumsGeneral Discussion
Modulen
Aaro123Aaro123
Mcalen Hi! here is a 2021 paper reviewing the trials on adult/children treatment with enteral therapy ( liquid diet) which show high %s of success. Modulen is what they refer to as polymeric diet. Review of exclusive enteral therapy in adult Crohn’s disease | BMJ Open Gastroenterology And here is a 2019 paper on an effort to create a food based diet based on Modulen Treatment of Active Crohn's Disease With an Ordinary Food-based Diet That Replicates Exclusive Enteral Nutrition - PubMed (nih.gov)... [ more ]
Sara Marie I looked up the ingredients, and this seems like something a person would not take long term, but it might bring a starving person back to life. The first ingredient is glucose syrup. And cow milk is after that, which causes intestinal upset in a lot of people. It sounds like it would make me feel very very bad and increase inflammation because of the sugar and milk. [ more ]
Mcalen Hi! I stared Modulen 2 days ago. There seems to be very good evidence for the use of Modulen in Crohns and UC for endoscopic remission, so like everything else we try that are being used for Crohns and UC, this is also worth trying I think. How did it go for you? [ more ]
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J-Pouch ForumsGeneral Discussion
Tenesmus
GEB56GEB56
Jaysee Hi - I’ve had the pouch since 2010 with chronic pouchitis and tenesmus. My doc and I went off use with Ativan .5 - and that does seem to help . She wrote for .5 3x a day but I don’t need unless really bad. I have made myself rso oil (Rick Simpson oil) cannabis suppositories / I tried to get the highest cbd content but the rso oil is a special blend used to treat cancer with higher doses. I use cocoa butter and the rso oil - heat them up and mold into suppositories and use as little as... [ more ]
Jfill21 My use of AbsorbPlus is primarily to maintain nutrition while giving my pouch a rest from pouchitis. Prior to my jpouch I would use the shakes when in a UC flare to calm my bowel. [ more ]
ytcrockpot @Jfill21 Could you please explain how AbsorbPlus helps with diarrhea? Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber with a shake
EI Eric in Seattle
Eric in Seattle Thanks Much [ more ]
AMB Hi Eric. I blend 1/2 cup milk with protein powder first then add about 1/2 -2/3 cup yogurt, 1/2 banana & whatever else -- sometimes a spoon of peanut butter or a bit of frozen kale. If I use chia it'd be in pudding form (soaked overnight in almond milk). Frozen fruit tends to have more water than fresh banana, so if you like the shake thick, start with less milk. A tip is to slice ripe bananas and freeze. About 1/4 banana blended in gives it great texture. [ more ]
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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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