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J-Pouch ForumsGeneral Discussion
Leakage/incontinence & trouble emptying after Sphincterotomy
SH Sarah H
Former Member GEnius!!!! [ more ]
Surya Using mesh to repair a hernia in someone with ulcerative colitis or another autoimmune disease can indeed present some challenges. The body’s immune system might recognize the mesh as a foreign object, potentially leading to an inflammatory response or even implant rejection . This reaction can exacerbate autoimmune symptoms or trigger new autoimmune issues . As for sacral nerve stimulators, they are generally used to treat conditions like overactive bladder or bowel dysfunction. While they... [ more ]
Pouchomarx curious how this might affect people with UC? when i had my hernia fixed , Dr Shen was upset they used a mesh to fix it. He stated anyone with an autoimmune issue could cause more issues with putting a foreign material in your body. So far its been several years with no issues but i would think if a mesh could cause issues why wouldnt a stimulator?? [ more ]
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J-Pouch ForumsGeneral Discussion
Allergies and Crohn's
A AprilLS
Sara Marie I use a Neti pot for congestion and it seems to help. Also I use "Easy Breather", and herbal formula that supports the immune system, for allergies. I don't have allergies as bad as some people, and those people all said the Easy Breather didn't work for them, but then again, they do all those other allergens like gluten and dairy. When I stopped dairy, I noticed a marked reduction in congestion and when I stopped wheat gluten I there was a noticeable decrease in systemic inflammation. I had... [ more ]
Sara Marie ❤️
Mysticobra I have allergies but not that bad. I did when I was younger. Allergy shots and the whole shebang. But they didn't have what they have now back in the 60's and 70's. Plethora of meds for allergies now. I'll use a generic Allegra and it takes care of my mild allergies now. Wish I had that back then. Allergies stink. Being polite. I did read up that sometimes as one grows older allergies dissapate. Go away. And vice versa. As of now I use a netipot. That may help. Can't hurt to try. And they... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need CC Surgeon referal forSomeone who has experience with complicated revisions
T tulsamom
Former Member Oh great!! Thank-you!! [ more ]
tulsamom FYI Dr Remzi is now at: Northwell Health Center for Advanced IBD Care , on Long Island Good luck Ljz. I'll let y'all know how the appointment went, after Sept. 9th. [ more ]
Ljz Following, May be seeking appt with Dr Remzi as well. Ant other patients who’ve had surgery with Dr Holubar at CC recently, or kind of recently? Other CC surgeons or gastro who deal with problem jpouches? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Difficulty Evacuating J-Pouch
S Surya
Former Member Your welcome!!! Drink more water please! ASAP! [ more ]
Surya Thanks for the link, Lauren of Emerald City! I checked it out; cool. [ more ]
CTBarrister That's a low dosage, but if you experience an improvement in symptoms within 72 hours, you will have your answer. Your difficulty evacuating is obviously not related to your hydration as your GI diagnosed, but drinking more than 30 ounces of fluids a day and consuming electrolyte beverages will be good for your overall health. [ more ]
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J-Pouch ForumsGeneral Discussion
Prescription Iron Supplements
C CTB23
Former Member Yeah hopefully now it will work. Just like I could not have orange juice with my colon but now i can! [ more ]
Sara Marie Thank y'all for sharing. This is yet another thing that the marvelous colon did for us that we have to find a way to regulate externally! I will make sure my doc tests for iron. It was ages ago, when I had a colon and had active UC, that my iron tested low and I tried iron supplements, which made the bleeding worse. Maybe they have something better by now. This was probably 25 or 30 years ago last time I tried it!! [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Raw oysters
G grateful
CTBarrister Those oyster were all ordered while I was on vacation last week in Portsmouth, New Hampshire. They were very tasty! The raw oyster option did exist, and one restaurant I visited had an oyster bar with one employee dedicated to shucking and serving the oysters. But the grilled oysters all looked good and I went with those. Fried oysters were also on the menu as an option. [ more ]
grateful WOW Barrister, looks delicious! thank you! [ more ]
CTBarrister These are grilled with bacon, Brie cheese and bread crumbs: [ more ]
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J-Pouch ForumsGeneral Discussion
CABBAGE JUICE
Anthony831Anthony831
Sara Marie Anyone else have any success soothing the guts with cabbage juice?? I haven't tried it yet. Somebody on youtube said to put a cabbage leaf, right after you have rolled it with a rolling pen, right on your but. You roll it up and sit on it. Anti-inflammatory they say! I do that with a perianal cold pack-I just sit on it. This helps the hems too, and it's so refreshing in the summer! [ more ]
Former Member Anthony is right!!! https://www.youtube.com/watch?v=ORnmefZu5Cg [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
High PTH
winter wishwinter wish
AMB https://www.j-pouch.org/topic/...6#720928881040886256 For more on this topic at see linked discussion above. [ more ]
winter wish I have Bile acid makabsorption and fat malabsorption and it can affect absorption of fat soluble vitamins. the theory is that the body compensates to keep calcium and vitamin levels by overproducing PTH. [ more ]
Bubba1028 I’ve actually ha problems with low PTH. Not sure why, or if it’s associated with my j pouch and bowl resection. Doc isn’t worried about it - not enough to do anything about it. I’m taking a calcium supplement daily. Have you asked your doc? [ more ]
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J-Pouch ForumsGeneral Discussion
Weight loss
Uc-DanielleUc-Danielle
lclassen ❤️
mainebound I was on Ozempic-my stomach emptied so slowly after dosage was increased that it almost seemed like a bowel ileus. Sick and in hospital until it wore off. Couple years later, tried Wegovy. 1st step up in dose, same thing a few weeks. This is just me though. Meds affect everyone differently. I will not touch them again. [ more ]
lclassen I’m on the same situation. I haven’t tried any of the shots yet. I did use Adipex in the past and did not have any problems. It is my understanding that you may have some nausea after the injection, but that can be minimized if you do the shot at night. That’s just what I’ve been told by several friends who are currently taking the injections. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch
AngiebAngieb
Former Member Is it hard keeping up with the bottle??? [ more ]
Deb C On the subject of enemas: I have discovered that I can use my bidet wand on my home toilet for this purpose, just hold it tight to the butthole and turn the water on. Much handier than messing with the enema bottles. I still take a bottle when I travel. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Electrolytes replenishment ??
Jeff807Jeff807
Former Member I am glad it works for you! [ more ]
Deb C Start with simple and cheap. Add a dash of salt and a splash of lemon juice. Maybe make the tea a little weaker. I do yardwork in the hottest part of the day because for me it's not the heat or the humidity, it's the mosquitos. Also I can't see well enough in dim light. I'm often out there sweating profusely for a couple of hours and have never had problems with dehydration. I probably do drink a couple quarts of tea and/or water a day but I don't force myself to drink any set amount. [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
The impact of COVID-19 on the pouch?
O OscarThePouch
OscarThePouch Well I guess it's too late for me to take Paxlovid now. I'm at day 13. I wish I had pushed for it. The doctor didn't want me to use it but I should have pushed harder and said I'd take the risk on Diarrhea. [ more ]
Jan Dollar I contracted Covid twice, last time a few months ago. Both times I had increased diarrhea with the infection. I also took Paxlovid both times. Paxlovid did NOT increase my diarrhea, it improved it. Jan [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Florida Doctor On Probation After Not Hearing Patient Scream During Colonscopy
CTBarristerCTBarrister
Mysticobra Oh I remember my first one. They gave me two valiums. Ha. That was a joke. And I thought it was normal. This was 1996! I was 40. Never been scoped. And my only second appointment to a gastro Dr. I went for a second soon after and could hear people getting them and the ones they do to the stomach from my waiting room. While the valiums were taking effect. It was a circular waiting area with about six rooms. One room was used to scope. And you could hear. Easily. After about 15 minutes of... [ more ]
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J-Pouch ForumsGeneral Discussion
Bad gas
nocolonstillrollingbbnocolonstillrollingbb
Former Member If a person really loves you for you then it will not matter to them. A pouch is apart of us and our disease is apart of us. They should love every part of us, if not- then they are not the right person [ more ]
tf I want to add I did all the above & it never seems to go away totally. Some days better than others. I find it very difficult to be with others like vacation, day trips. Going to the bathroom with your girlfriends & sharing rooms together is over. Can not do. If u have a partner already & they went through this with you it's not so embarrassing. Who out there is now single for whatever reason after pouch & how do u ever get past this with someone new. Only this group would... [ more ]
Scott F When I was treated for SIBO I was on the antibiotic for a few months. I don’t know how long your treatment was, but perhaps it was incomplete? The other advice (to follow basic gas-reducing measures) is also appropriate, but you may already be doing it. In addition it’s worth avoiding swallowing air (slower eating and drinking, etc.). [ more ]
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J-Pouch ForumsGeneral Discussion
Third obstruction in a month
B Bubbapup
Former Member I am happy the doc wants you check in with her daily! That sounds great!!! I really believe it may take a month for you to recover, please do not overdo it hon, you need rest, the doc is 100% right!! Rest is the best medicine honestly, that is how your body heals, rest and sleep. Glad you are going to do FMLA, that is important!!! Your welcome, keep me updated!!! [ more ]
Bubbapup Doing okay. Just uncomfortable. Not in pain meds. Doc called this AM and wants me to check in with her daily- just give the nurse a call and let them know how things are going, how many times per day I’m going, if I have pain, nausea, etc. Yesterday I slept almost the entire day. I feel better today but just can’t get comfortable in any position other than laying down. I told the doc that and she said yea, it sounds more muscular-skeletal, given everything I had done. She said to listen to... [ more ]
Former Member How are things going???? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cipro stopped working - on steroids, maybe Crohns, whats next?
F feirs1
CTBarrister The term "broad spectrum" antibiotic means it covers a lot of bacteria but not all. Cipro and Flagyl are from completely different antibiotic families, and work on different bacteria. It's common sense that using them in tandem ought to provide better results than using either one alone, and that was my experience as well as Scott's. A lot of people unfortunately struggle with the side effects of one or the other, particularly flagyl. If side effects are not an issue with either drug, there... [ more ]
Scott F In my case Flagyl alone had never been effective, but it nevertheless helped a great deal when added to my failing Cipro regimen. The combination has worked well for about 8 years. [ more ]
feirs1 So to answer some of the questions in the chain.. Yes, have tried other antibiotics none worked except for Cirpo. Also was on Remicade before I got the J pouch - it worked for a few months and then no more. Since they thought it was UC we did the J-pouch. I am open to biologics if they help. I am just scared that nothing else will help. Anyone have luck with the biologics when either antibiotic resistant pouchitis or rediagnosed to Crohns? [ more ]
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J-Pouch ForumsHelp! Need advice now!
pooping
MC mary chapman
Sara Marie I started with a teaspoon of psyllium before each meal (with lots of water) and now I use a heaping teaspoon. It's best when I combine it with other soluble fibers like flax meal. [ more ]
Scott F I’d try something like half a psyllium dose (as indicated on the package) with a meal, one time, and see if there’s a noticeable effect. If that doesn’t do anything much you could try 3/4 of a dose, and so on. I take a full dose twice a day, with 8 oz. of water. [ more ]
mary chapman Thanks for your replies what would be a good starting point for psyllium. i don’t want to thick stool. Anyone use miralax and psyllium ? Has anyone got experience with san pellegrino magnesium [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yeast Infection on Bottom
J jlmathis69
Sara Marie I learned that from someone here. It makes sense. [ more ]
Former Member Oh nice!!! Thank-you for that info!!! I remember you said Calmospetine is not good for yeast infections because it traps the yeast??? [ more ]
Sara Marie @Former Member, I haven't experimented with multiple jock itch creams. The one I have tried which seems to work is Walgreens generic "Butenafine Hydrochloride Cream 1%." I like prefer normal humans as doctors, too! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Drs for troublesome pouches?
L Ljz
Former Member Yeah I forgot to mention him to (Dr. Remzi), I never once heard a complain about him, and he has videos on youtube so you can get a good feel about him. he has tons of videos on youtube. [ more ]
Ljz Thank you Lauren and Jeff’s Mom! I have heard of Dr. Remzi and how wonderful he is. I will consider those names you’ve provided if no one at CC, but possibly a virtual visit to get things started. I will do anything and everything also to avoid an ostomy. Thanks! Much appreciate your feedback! [ more ]
Ljz To think she wants me to see gastro and surgeon. She thinks because of the various complications I have being with a team there would be helpful. She also mentioned a surgeon that was there that left so she did not know who to recommend. It is suspected I have a prolapse. There is a good colorectal surgeon here in Indy, but think she thinks I need larger better equipped pouch team for all the various issues. This surgeon put in a Medtronic interstim device May 2023. Seems to help some but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
j pouch may be failing, need some advice and any tips going forward
R RustyShackleford
Ljz So glad you saw dr and are addressing the problems. Good luck with your treatments and recovery! [ more ]
RustyShackleford @Scott F at first I was having trouble with actually keeping them in once I had already inserted them but I've since gotten the hang of it and I've learned that a small amount of leakage is somewhat normal and not too much to worry about. As I've been taking them, I'm doing better with it though [ more ]
Former Member Glad your doing better, keep us updated [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchscopy
G grateful
Scott F I do take both Cipro and Flagyl now. Cipro alone worked great for about 8 years, but it slowly lost effectiveness. Flagyl alone had never done the job for me, but adding it to the Cipro did the trick, and the combination has worked well for an additional 8 years so far. Combining antibiotics when necessary is pretty standard in chronic pouchitis, but it also increases the set of potential side-effects, of course. [ more ]
HEMU Sara - thanks i will get it done by my surgeon for sure but since he resides in a different city i will plan it out at the earliest till then i am at the mercy of my local GI consultant ( not a great one) [ more ]
Former Member ❤️
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J-Pouch ForumsPouchitis
moving from long term antibiotics to a biologic
DJ HDJ H
bionicbowelman I moved from employee insurance to ACA in April of this year due to transitioning from an employee to a remote independent contractor. There was a lot of plans to choose from on the ACA for the state I moved, Oklahoma. I made sure to pick a plan that would cover the Stelara that I was using. I ended going with a United Healthcare plan. They had filters and stuff on the marketplace that you select to narrow down the plans specific to what you need/want, including the deductible you want. I... [ more ]
Abdulaziz Hi , how are you feeling today ? what is your current medications ? [ more ]
CTBarrister I felt the same way. I was a Long termer on antibiotics from 1995-2015. I went on Remicade back in 2015 and haven't looked back, although I still need antibiotics occasionally to supplement the Remicade. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ulcerations around anus- help!
L Ljz
Former Member Your welcome. Sorry you have to got through this hell! I hope things get better. The lidocaine idea sounds genius!!! That will numb that area for you. Yeah i understand what you mean. Please let me know how it goes!!! It might be worth getting the anorectal monometry but I understand what you mean when you say it might be too painful, we been through enough shit lol. Let us know how it goes with everything hon!!! [ more ]
Ljz Thanks! I do have surgical consult next month for suspected prolapse but trying to survive til then. Ordered some things with lidocain that might help. Just wonder if anyone else had other suggestions. Gastro want me to do Anorectal Monometry test before seeing surgeon but thinking too painful since I’d have to be awake. I’ve never been diagnosed with Chrohns, just UC, but see that connection in research on perianal disease. Mmmm..I’m following treatment recommend as best I can. Again, thanks! [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Do you use 3m Cavilon No-Sting Barrier Film Spray?
SM Sara Marie
Ljz The spray may work but I found difficult to use/ reach area. The cream does not adhere well at all to moist tissue and doubt it stays on more than hour or less. I’m searching for replacement to ILEX paste, no longer available, because it adhered to skin fantastically, protecting sensitive area and promoted/ allowed healing when output created raw skin. I have purchased Cavillon, and at least 6 others that do not adhere at all and therefore do not help. All these creams are nice, soft and go... [ more ]
Former Member Yup! You got it! At least one person told me they use that and they like it, same thing with the spray too. I do not remember who it was though unfortunately. [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
No movements all day, not even an urge!
ValenValen
Former Member Exact situation!!! [ more ]
girlunky HI Valen, I was just today thinking about how when I get dehydrated my output gets too thick and it's hard to empty. Then as soon as I get enough fluids on board I can't get far from the bathroom. I find emptying easier when it's watery. I also need to take in more water than 'before-pouch', since a fair bit comes out that way instead of the bladder. [ more ]
BK 123 I'm a guy, but if I ever feel like I'm too bulked up and bloated I'll have a hot cup of coffee or maybe some hot tea. Luckily I'm able to tolerate coffee and have multiple cups throughout the day since it doesn't send me running to the bathroom. Might be a placebo effect for me, but I know for others it can get things moving. If it's a concern it's worth a shot! [ more ]
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J-Pouch ForumsGeneral Discussion
Crohns?
chili123chili123
CTBarrister Basically everything Scott said above- should be repeated. Worrying about whether's it's Crohn's is utterly pointless- all the treatments are the same regardless of what you call the inflammation or where it is. What's important is whether the treatment works. I have the exact same situation going on. You will be indeterminate on Crohn's by any knowledgeable expert and anyone who tells you otherwise has an opinion you likely shouldn't trust. And you will always be Crohn's indeterminate. It's... [ more ]
chili123 I cannot tell you how hopeful I am that you are right!! I have a virtual appt with a gi doc at Cleveland clinic next week so hoping she can provide answers....but, they gave me someone new so we will see. THANK YOU [ more ]
Scott F The terminal ileum location suggests that it might originate with backwash from the pouch causing inflammation, the inflammation causing the stricture, and the stricture causing stool stasis, which could potentially have caused the ulcers. I don’t think Crohn’s is likely to turn out to be your problem. It’s best to keep the stricture managed as needed going forward. [ more ]
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J-Pouch ForumsGeneral Discussion
poop consistency fluffy and ragged
RenReevesRenReeves
New577 The only thing would add to @scott f post above is that when I overindulge and I get excessive gas, the stools tend to float. Since I take gasx with every meal (does not eliminate but reduces the intensity of the flatulence) those instances occur infrequently. [ more ]
Scott F If you are having no pain, urgency, leakage, or excessive frequency then poop consistency is likely to be of no importance whatsoever. [ more ]
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J-Pouch ForumsGeneral Discussion
Second obstruction in a week
B Bubbapup
Former Member Of course its not going to work for everyone, I just wanted to post what works for me. And I add salt to my water to avoid low salt. The salt I use is iodine salt, it has sodium, potassium and sugar in it. I should have added that in there in my old post. And she the person did say my post helped the past few days since she was not much of a water drinker. But like you said, its not going to work for everyone. I just like to post what works for me in case someone wants to try it. [ more ]
Scott F Just to be clear, pouch excision is sometimes a big surgery, and is generally done as an open procedure, so it might tend to form more adhesions than a lysis-of-adhesions procedure alone. I don’t think it’s likely that the outcomes have been directly compared. Every abdominal surgery has the potential to add adhesions, and only a small fraction of those adhesions tend to cause us appreciable trouble. It’s really a crap shoot (pun intended). My point was more like 1) if you need a pouch... [ more ]
Pouch2021 Sorry my reply above was in response to Scott F. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotic recommendation?
C CLB
CLB Thank you so much for your replies! For RenReeves: What is the dosage of S. Boulardii that your doctor recommends? I'm going to get some Florastor and start it ASAP. Thanks again! [ more ]
RenReeves Hi, for C-Dif prevention, nothing beats saccharomyces boulardii. It is ridiculously effective. I kept getting C-Dif every time I was on antibiotics...until I started taking S. Boulardii during, and a couple months after, antibiotics. My GI doc now has every patient take it with their antibiotics and he has been very impressed with what he claims is a 80-90% reduction in C-Dif cases in his patients. https://www.saccharomycesboula...%20therapy%20for%20C . [ more ]
Scott F The probiotic that is supposed to help prevent C-diff is Florastor (or other S. Boulardi formulations). That’s a yeast strain, very different from bacterial probiotics. The study you read about “VSL #3” was actually studying the product now called Visbiome. The product formula had separate ownership from the product name, and they had a little tiff. Nevertheless, they are indeed very similar. I use Visbiome now. It’s expensive, but you might want to compare prices per CFU - lots of... [ more ]
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J-Pouch ForumsPouchitis
Probiotic recommendation?
C CLB
Former Member Yeah never hurts to try Let us know how it goes hon! [ more ]
CLB Thank you so much for your replies! I don't have much hope for my insurance covering anything, but I will ask my Dr. about sending a letter. [ more ]
Former Member Scott F told me in the past that his insurance has covered VSL, maybe talk to Scott F on how you can get insurance to cover it. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis after iron infusion?
C Cb2009
Scott F There are certainly consequences to pathologically holding in poop or pee. Allowing a J-pouch to fill to its normal capacity is nothing like that. [ more ]
Former Member Scott F: I do no think you are a nice person and that is why I do not respond to you but since in the past you kept posting on on what ever I post, I am going to put an end to it by posting info here, after this I am not going to respond to you anymore because I was tired of your rudeness in the past and I am tired of it now. https://www.carygastro.com/blo...0bowel%20syndrome%20 (IBS) https://www.medicalnewstoday.c...of%20frequent%20UTIs First website: talks about how holding poop in a colon... [ more ]
Scott F Lauren, please stop repeating this nonsense as though it were established fact. There isn’t a shred of evidence that delaying bathroom trips has any connection to pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
Immy
SM Sara Marie
Sara Marie Wow, NOBODY has taken this stuff? I'm perplexed. I think this stuff might be really helpful for the system. I'd love to hear anybody else's experience because I think lots of people could benefit. I think it has made me a lot healthier. For those who dare to experiment...THIS is something to try! I emailed the Immy people and they said the heat-killed bacteria hangs out in the lower part of the small intestine and does its work there, not in the colon, until it gets flushed out. I wouldn't... [ more ]
Former Member ❤️
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J-Pouch ForumsPouchitis
Xifaxan for pouchitis
D Diesel
Indiana I want to try this one but not available in Australia unless you pay dearly, but maybe worth it for one month? [ more ]
FreeAtLast I ran out of my Xifaxan a couple months ago and sadly my Cipro/Augmentin/Pepto combo couldn't keep things stable. My copay for the Xifaxan was $0 through Walgreens, but now I'm wondering what it'll be with my new mail-order pharmacy (ldirx.com). When I had Xifaxan in the combo, I was able to keep things stable (one or two BMs per day, mostly formed) for 7-10 days before I had to add in some (yucky) Flagyl for a couple days for a reset. I'm up to about 6-8 BMs a day now, severely loose... [ more ]
Diesel Ok, thank you for the info! [ more ]
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J-Pouch ForumsGeneral Discussion
Has any noticed a change in bowels associated with starting Statins?
NYC GooglerNYC Googler
grateful Are you taking statins because you are 65 years old??? You have normal cholesterol readings? Taking statins is highly controversial and I believe we jpouchers don’t t need to add any medication unless it is absolutely medically necessary. i am 75 and they want me to take statins 5 mg. I too have normal cholesterol readings. I am fighting it because their reasoning doesn’t make absolutely no sense to me and is stressing me out to the max. [ more ]
JTinSC My cholesterol numbers have always been very well in range, sometimes very low. But my doctor started me on a statin last week because I am "over 65 years old". Within two days, I started "leaking". Granted, I have always had problems and take a large number of lomotil daily. But now, I can't leave the house, much less the bathroom. And I wake up during the night to take a shower and change my sheets, which is new. If there is a statin that is slowing the activity of the J-pouch, I would... [ more ]
Jan Dollar The reason I ask is because each drug is different, so the bias would be assuming a similar effect for all statins. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Conclusion to my 2mm dialation
chili123chili123
Former Member Yeah I keep my stuff in a folder: I have my colon pics, and my J-pouch pictures. I plan on keeping everything so I can make a scrapbook of it haha. I have not posted mine yet. Some people have posted their J-pouch pics, I love looking at the pics so I can learn more. [ more ]
chili123 Never thought about it.....I'd have to dig them out of a box. I certainly vividly remember them, lol. Have u posted yours? [ more ]
Scott F ❤️
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J-Pouch ForumsHelp! Need advice now!
Onset of (new) symptoms
KennyJG44KennyJG44
Sara Marie This makes total sense! You know your body. After all, you live in it, and if it doesn't feel right, that's probably the best guide! From what I have read on the all-knowing internet (haha), soluble fiber (like psyllium) is more of a gut regulator than anything else. It can help with movement that is too fast OR too slow, but the slower you are, the more water you would want to take with it. I didn't take it for years because I thought it was only for constipation. It has helped my guts a... [ more ]
KennyJG44 I've always been hesitant to try any fiber agents - just really worrisome regarding causing any blockages, etc. I have been prone, mostly, to low motility, which causes a sort of constipation (and then SIBO). I have been handling that well. What would (either) fiber do? And, what is the difference? Scott, to answer your other question, I do have a bounty of Flagyl here, more than enough for a 2 week course. I'm thinking of starting it and making an appt for 8/14 (2 weeks away). Seem... [ more ]
Former Member Right on point Sara Marie!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Staples
A AustinA711
Former Member The staples are usually titanium, they normally stay in the pouch. Do you still have that pain??? [ more ]
New577 I would think after all these years the built up scar tissue would adequately support the anal anastomosis. Your GI who performs your scopes would be the best resource to look at/feel that area for integrity and any other issues. For each scope my GI does performs, he does note that area, what it feels like, any staple line ulcers, etc. I can tell you from experience, that irritation in that area (I have cufffitis) can cause symptoms you are experiencing. [ more ]
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J-Pouch ForumsGeneral Discussion
Inflammation and Pain
C capper
Former Member Yeah I never heard of that either but I would not doubt it. I know I had that Joint issue when I had my colon/rectum but it went away after surgery. [ more ]
Sara Marie I also wondered about gout. I have never heard of IBD arthropathy/enteric arthropathy. I will go look that up! Ah...here is what is says: "Enteropathic arthritis (or enteropathic arthropathy) is a type of arthritis associated with inflammatory bowel disease. The condition causes joint inflammation and tenderness in the arms, legs and sometimes spine. It also involves digestive problems. Certain medications and lifestyle changes can help reduce symptoms and prevent joint damage." (... [ more ]
Pouch2021 There is significant overlap in the meds used for IBD, psoriasis, psoriatic arthritis and what I believe you’re getting at, Capper, which is called IBD arthropathy or enteric arthropathy. I don’t know you or your health history/risk factors but I wonder about gout based on your description of the foot pain. A rheumatologist would typically be able to distinguish between all of these diseases and not sure what to make of all the talk about “inflammation.” While the diseases can be complex... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Inguinal Hernia
PSJPSJ
Former Member Thank-you so much for the update!!! Sorry Covid ruined everything two-fold!!! That stinks that you had to go through that. Do you still want to call daily for cancellations or do you not want to chance it at this point??? [ more ]
PSJ I had my surgery moved up to 7/19 and then got Covid so I had to postpone it. I then lost my other date on 8/9 and now have to wait until 8/27. If it can go wrong it will with me. You get used to it after a while I guess. [ more ]
Former Member Sorry about your hernia! I am glad they are going to fix everything. Let me know how it goes!! I will keep you in my prayers. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Small bowel obstruction help
CG copper girl
Former Member Damn! Thank-you for sharing! And sorry that happened to you. That does sound like hell. Were you drinking a lot of water that day before the obstruction happened and during the meal??? And did you keep eating even after being full??? [ more ]
TCM Pete, I know the routine but thank you for the laughs. The obstructions are anything BUT funny but we have to maintain our sense of humor...while ditching any shred of modesty. You nailed it! [ more ]
PSJ I had one obstruction a couple of years ago and it was hell. I put it off thinking I was just having a few bad days in a row. This was Labor Day weekend and I was eating all sorts of crap. The last thing I ate was mac and cheese with about 40 different cheeses in there (seemed like it anyway) and I swear that is what finished me off. I made it through Monday and Tuesday morning I was on my living room floor and a huge amount of pain. I went to the ER and they gave me an NG tube which fell... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Dialation
chili123chili123
chili123 Thank you everyone [ more ]
Scott F @chili123 the newer terminology is shifting to "Crohn's-like disease of the pouch" for most J-pouchers, and it generally doesn't affect the whole GI tract. In any case, imagining the worst-case scenario is terrible for your disposition and almost always turns out to be wrong. As CT wrote, even if the findings are more Crohn's-like, your doctor will simply find a treatment that works for your condition. A stricture is generally at a single location, sort of like a rubber band around the gut,... [ more ]
Former Member ❤️
See all 21 replies...

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