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J-Pouch ForumsHelp! Need advice now!
Pseudo obstruction
K Kushami
Kushami Going okay. Still slightly improved. Trying to coax small bowel back into action with some medium fibre foods. Good news is that I am drinking freely and not vomiting. If anyone wants to read about megapouch (it’s very rare), here is an article from the Cleveland Clinic: https://sci-hub.se/https://pub...lm.nih.gov/30327916/ (You may need to click on “Save” in the little rectangular box under the raven icon on the left to read as a PDF if not on a desktop.) [ more ]
Scott F I’m glad things seem to be improving. Gravity is important for pouch emptying, but you have to get more creative than “vertical” with a pouch that is partially malpositioned. [ more ]
Sara Marie ❤️
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J-Pouch ForumsHelp! Need advice now!
Can Feel Small Bowel Obstruction Forming but Big International Trips Coming Up
N NuAnoos
New577 Perhaps a scope procedure with an ileoscopy would be useful. because I had a redo of my takedown due to a fistula, my GI (during pouchoscopy) likes to snake the scope all the way up to the takedown to make sure all looks good. your time constraints may not allow for this, but it might give you peace of mind to get an all clear from an expert. [ more ]
NuAnoos Scott, I should have clarified, I was running daily 10 years ago, and ceased after my operation to clear that SBO. I have recently resumed exercising with vigor and this time I have chosen rowing on a machine, as Cipro ruined my knees a few years ago and prevents me from running. I have been rowing pretty consistently for 3 to 6 months and that was the same window I had been running daily. I am also wondering if the movement exacerbates the development of scar tissue in my abdomen. [ more ]
NuAnoos I wonder if this is a pre-existing condition. I haven't had any medical treatment or recognition of what I think may be occurring here. But then again, I am pre-disposed to a greater risk of SBO, so perhaps the insurance will treat it that way. I will be in South Korea in April, followed by Aruba, and then in June, Italy, Greece, Montenegro and Croatia for several weeks. I'm truly hoping not to end up in any hospitals abroad, or even back home for that matter. But, I do feel like food isn't... [ more ]
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J-Pouch ForumsGeneral Discussion
Hot flashes
A AMB
Jaypea Interestingly hot flashes also occur with re-feeding phenomenon. If you have been malnourished for a time and your body is getting back to normal your metabolism goes a bit bananas and will often "rev"up at the most inappropriate times. [ more ]
AMB Good points - association and causation are two entirely different animals. Still, my uneducated hunch - at least for me - is there is some relation to removal of the colon and reconfiguration of the small intestine. If ever I do get worked up by an endocrinologist, I'll report back. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Anybody on Entyvio < How is it working?
P PGR
Kushami ❤️
Scott F One of the reasons I’m still on Cipro and Flagyl is that I know there are no guarantees if I switch to a biologic, and the transition period is likely to require enormous patience and will probably be messy and unpleasant. I’m sorry you’re going through this, and I hope the Entyvio starts working for you soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Longevity with Jpouch
PSJPSJ
skn69 I am an ancestor... literally...I've had my K pouch for almost 44yrs. At the time, my surgeon told me that it could last as long as I did...it is, in fact, my own guts so there is no reason that it should not. I'm hoping that he is right! K pouchers have a one-way valve, made of our small bowel, that gets intubated regularly throughout the day, so it is our weak point and it can break down and require a fix...that said, I've already had a few fixes so I am hoping that it lasts at least... [ more ]
PSJ That is fantastic news! [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
How does Stelara help?
Y ytcrockpot
PSJ I just started Stelara 6 weeks ago. I had issues with Remicade, after 10 years started giving my psoriasis. It took a few weeks but it seems much like Remicade to me. Hopefully it will eventually get rid of the psoriasis because that is no fun either. I am hopeful this will continue to work as advertised (literally). [ more ]
Jan Dollar Good catch Pouch 2021! Of course Stelara is not gut specific, since it treats psoriasis too. It just targets a different inflammatory pathway than the TNF inhibitors. Jan [ more ]
Pouch2021 As Jan said, Stelara targets interleukin 12/23 pathway which mediates inflammation but this pathway is not gut specific and is implicated in other disease processes. Stelara is approved for UC and Crohn’s, but also psoriasis and psoriatic arthritis. It is in clinical trials for a few other rheumatologic diseases, as well. Just wanted to add this, as it is not like vedolizumab which does have a gut specific target (an integrin so totally different mechanism of action). This is important... [ more ]
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J-Pouch ForumsGeneral Discussion
9 Years…
ATXGuyATXGuy
Maverick Plus ❤️
AMB ❤️
Sara Marie I'm so glad you have found this to be the case! That was me too, at first. The gut seems to have gotten more sensitive over time. I hope that doesn't happen to you! I have had my pouch about 10 years longer than you, it looks like. [ more ]
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J-Pouch ForumsGeneral Discussion
Humira and Prednisone Loop
M MetsFan
BK 123 Yes they both definitely lower your immune system. Strange that the GI doctor would take you off the Humira and switch to prednisone - but what do I know, I'm not a doc haha. [ more ]
MetsFan I heard that about the at home Covid test. Mu son's friend bought 5 of them. He took one and it was positive. The next day he did another text and it was negative, so he did another and it was negative, Finally he went to a testing center and it was positive. I don't have the option of working remotely and wear a mask from when I get out of the car until get back in it. Am I correct that both Humira and Prednisone lower your immune system? Thank You Bob [ more ]
Scott F It’s important to remember that Covid tests (especially the home ones) can give false negative results, so your “cold” might be Covid in spite of the test. Is the mask you are wearing a well-fitted N95 mask? Do you *ever* take it off in the office (e.g. to drink water or eat)? Does it ever fall under your nose? In any case, it’s more questionable than ever before (for good reason) to go to a shared space while you have cold symptoms, whether you have a positive Covid test or not. Covid... [ more ]
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J-Pouch ForumsK-Pouch Korner
Blockage
amosamos
jan15 great to get appointment! [ more ]
amos Finally have a video appointment with dr Cindy kin at Stanford on Friday. The last person I spoke with said they can’t see where I’m at and if asked to tell them I am in California. Hopefully all goes well and I will be able to get a real appointment to see her soon. [ more ]
jan15 amos-- I think the 'need to be in state' is state law. some states don't have them. I just say I'm in state. suspect the docs don't care. I agree your situation is frustrating. sorry I have no suggestions. when there are delays to get an appointment i often request to see their pa or resident or whoever works under them. or i get my pcp to make the connection, although i doubt it would help in this case. perhaps your pcp has an idea. afterall, they know how to make system work. jan [ more ]
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J-Pouch ForumsGeneral Discussion
Gas!
FM Former Member
MetsFan Hello, I have found that Phazyme. It is one of the strongest gas medications. Also I have used Kaopectate. Of course diet plays a big part in it. Hope This Helps Bob [ more ]
New577 Gasx works for me in that, I do not get painful bubbles .There seems to be less of it, and I am able to to pass it lying down. admittedly, some days there seems to be more. I think it is one of those things we can reduce but not eliminate. as for smell, sometimes it’s nasty hydrogen sulfide smell. I’ve also had diagnosed SIBO; and that produced, with nothing to stop it, the nastiest, foul smelling gas and stool of my entire life. admittedly, I have never tried a fodmap diet and I eat tons of... [ more ]
KS So, I have been dealing with gas for past 3 years and my doc kept saying try FODMAP, gasx, gripe water, pepto bismol. Except FODMAP, everything worked to cure gas. But nothing prevented gas from happening. Recently, it was soo bad, my GI ended up doing a CT enterolgy and I went to my surgeon. He suspects I might have SIBO and treating that might fix this problem. Will keep you all posted. [ more ]
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J-Pouch ForumsGeneral Discussion
Magnesium as a spray or footbath?!
L LoveLife
tulsamom Nope. I don’t remember reading that. 🤣 I just spray it on like a half hour before I go to bed. [ more ]
Sara Marie I'm going to order some of the kind you recommend. On the bright side, even my itchy old spray helped (which I tried again this morning). I sprayed it on before my shower and did a few things, then washed it off to avoid the itch, but the magnesium seemed to have sunk in, at least some. I think I'll get this new (to me) kind and hopefully it won't be itchy, because I would love to be able to apply it before bed. The ingredient list is somewhat different. Question, the directions say that you... [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Gaining weight
G GraceB
Sara Marie If I am sedentary I usually end up feeling terrible. I guess it's a body type thing. [ more ]
PouchLogic I always have problems gaining weight. For me the best option is doing as little as physically possible and eating as much as possible. It also depends on what you can tolerate for diet. Please provide more information on your diet, daily routine and any other issues that could be at play. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
18 months out still can’t eat more the 6 once’s
BrigitteBrigitte
Maverick Plus It took me 2 years to feel like I was back to a "new" normal. But some of your symptoms (as Scott said) may be unrelated and need attention from a doctor. [ more ]
Scott F It seems like there are two separate things going on. The upper abdomen pressure and nausea probably has nothing to do with the J-pouch. It could be IBS, or perhaps something like gastritis. The difficulty emptying the pouch (with “dense” stool) sounds pouch-related, and for this I’d try adding psyllium (Metamucil) a couple of times per day and drinking more water. A J-poucher will generally have some trouble emptying if the stool becomes too firm. [ more ]
New577 May I inquire as to the results of the scoping? Also, i experience some bloating if I eat “too much”. it’s hard to define but an example would be more than 4 ozs of steak. My pouch will be fill up very quickly and the BM is not pleasant. Other times I will have cramps until I release a watery BM. These are exceptions for me and since I eat only 2x per day and do not snack I seem to maintain a good QOL. others have found success by eating several small meals per day. Everyone is different so... [ more ]
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J-Pouch ForumsK-Pouch Korner
Video: Symposium on Ileal Pouch Disorders 9/2021
J jan15
Kushami Thank you for posting this! I am just watching it now to see whether they mention my rare complication. [ more ]
AMB Just found this post. Thank you so much for posting it. I'd seen the post for the up-coming January program, have that on my calendar and shared it with my local GI group. Educated patients are important partners in their own care, but including them in medical programs at this level is rare. What a great program Columbia has developed. [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
Thinning stool?
FM Former Member
AMB https://healthonline.washingto..._Guidelines_9_09.pdf I like this guide. Still refer to it over 18 months out. [ more ]
Scott F Assuming adequate water consumption (this is critical!), I'd try psyllium first and see whether it was helpful. If psyllium doesn't do the trick then Miralax in small doses can work. [ more ]
Cb2009 I tend to get thicker stool that makes it difficult to empty. I find taking magnesium daily thins it and if I need more I will drink coke, that usually helps too! I have heard fruit juices can do the same especially grape or apple, but I have not tried this myself. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dealing with stress and excess BM, any tips?
ValenValen
Mrs P ❤️
New577 My solution for cramping is levsin, which does a good job of stopping everything for a while. though I take Imodium 3x/daily, I see it’s value as slowing things down long enough to have less caustic/acidic BMs . when I experience IPS ( I am former IBS sufferer), one levsin under the tongue works in about 5-10 minutes and I get relief. BTW, I average 6 BMs per day, so my feeling is 6-8 is not excessive, but 3-4 per day is impressive to me. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Anyone have experience with having a Fimbrioplasty?
B bobbiestonge
ANbooknerd Hey, I didn't have the fimbrioplasty as the specialist I have been working with said there was just so much scar tissue that chances in my case were too strong that more scar tissue would form and we would be back at square one. I am just finishing up 2nd round of IVF and just waiting to see if this time we will truly have success as the first round ended with a blighted ovum, so sack developed but nothing else. After the first round we fixed some other issues so hoping that this time we... [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis
C Cb2009
Scott F Doctors who aren’t familiar with J-pouches sometimes have no idea that long-term antibiotic treatment is a reasonable choice. If they can’t be educated (e.g. by handing them a journal article) then it may be necessary to find a more knowledgeable gastroenterologist. My doctor was more open minded, and we learned together. He actually gave me a copy of a review article about pouchitis, but I had to point out to him that the article suggested that combination antibiotic therapy may be... [ more ]
SteveG For me mesalamine also had side effects like a foggy brain and light fever. My pouchitis / cuffitis was kept in check with budesonide (Entocort) for many years. I still take a small dose of 3 mg every day. It takes effect mainly locally at the end of the small intestine and pouch. Yet it has only a calming effect for me, it does not heal inflammation. I also had c.diff from taking Cipro & Flagyl, but I continued with those meds after treating c.diff with another antibiotic, because they... [ more ]
New577 Hi cb, Cuffitis started for me very quickly after takedown and I have been on canasa suppositories ever since with good success. I am so sorry that mesalamine does not work for you, as that seems to keep my cuffititis in check. My recent scope showed no inflammation but the biopsies still show microscopic colitis in the cuff. Having said all that, I am not willing to ever have surgery again, so I will do whatever it takes to avoid a repeat of dysplasia in that area. I even asked my GI if we... [ more ]
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J-Pouch ForumsGeneral Discussion
Diversion to loop
K Kushami
Kushami Thanks, folks. I just realised I had asked this same question a year ago. Still can’t bite the bullet to go ahead with it. Seeing surgeon in March for second opinion. [ more ]
n/a I was diverted to an end ileostomy by laproscopic surgery, and was out of the hospital 3 days later. (I was able to have an end ileostomy since I was having the pouch removed a year later). I developed an ileus afterwards, but I don't know if ileus is "likely" or not after diversion. No problems with the ileostomy after the ileus cleared up. [ more ]
New577 I was in the hospital after a colectomy, jpouch formation and loop ileostomy for 7 days. I would assume for a loop only and all goes well at least several days. i did not get an ileus after all that and was eating solid food within 48 hours. surgical outcomes vary, so who knows, but here’s hoping for the best. [ more ]
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J-Pouch ForumsPouchitis
EGCg
R reese1122
van Also interested in the dose. If it’s only 1 capsule daily for pouchitis?. Also interested to hear if pouchitis resolved with the green tea extract. [ more ]
Sara Marie Hi! Just curious how it worked out with the green tea extract. How much did you take? Do you still take it? Thanks! [ more ]
katenet ❤️
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J-Pouch ForumsHelp! Need advice now!
DC area to buy marijuana
MN marc nolan
CTBarrister PSJ, There is no need for a medical card in MA. Marijuana is legal for recreational purposes. There is a great store in Holyoke, Mass called Canna Provisions. They have a sister store in Lee, Mass. Both stores are excellent. https://cannaprovisions.com/locations/holyoke-ma/? There is also an online order distillery called CBDistillery which another member here recommended to me. I just placed my first order for sleep gummies with them and it should arrive by UPS today or tomorrow. No need to... [ more ]
PSJ I just got my medical card here in MA. I started back in 2008 when I ran out of options. i took every horrible pill they gave me, especially the steriods were the worst (and best unfortunately). When I decided to try it it was only researched in AU and UK with promising results. When I was younger I did it a lot but once older quit for 10-15 years until this happened. For those who think it is crap I can tell you without any doubt in my mind whatsover IT WORKS and works WELL at least for me. [ more ]
marc nolan Thank you for your responses. Dispensaries cannot sell to out of state folk. I have a little research done on various gummies, I am def hoping for some help with the stores I have been looking at. I currently take CBD and Delta 8, but I think I need a higher level of Indica. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Reducing Elevated calprotectin??
V van
van I'd say pouchitis, As I had it late last year as well. These current results were found on a routine test. I don't have any symptoms yet so that's why his going to wait for my next appointment and re test in a month. [ more ]
New577 Hi Van, If your reason for high cal protectin is pouchititis, you might need antibiotics to fight it. Others will weigh in on this in my case, my high cal protectin is caused by cuffitis, and that inflammation is managed by canasa suppositories. My cal protectin numbers have been steadily dropping in the year since I have been on this medicine. [ more ]
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J-Pouch ForumsGeneral Discussion
Remedy to reduce bowel movements
S samlc25
3Cutedogs I was diagnosed with Crohns, as well. (Fistulas and a lot of mucus). I irrigate in the shower every day and it helps a lot! I take two Citrucel capsules in the morning and two before bed. This helps thicken up the stool. My sphincter muscles are scarred and the "opening" to my pouch doesn't seal. Due to this, I don't have much control and have accidents pretty much every day/night. But, I am thankful that I still have my pouch after 33 years and hope I can make it another 33. [ more ]
Godfrey Nolan I would also recommend the Psyllium husk. If you can't stomach the taste, the pills work just as well. [ more ]
samlc25 My gastro did a flex-sygmoidoscopy and detected it immediately. Lots of ulcers and white spots that he said are consistent with Chrohn's. I'm pretty sure I have had it for at least a year, maybe two, but I just didn't get it checked and assumed that that was life with a pouch. I would definitely do a scope just to make sure you are good. I just started assuming I'm as good as I can be when I should have been getting scoped. Best of luck to you. [ more ]
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J-Pouch ForumsGeneral Discussion
FODMAPS--eliminating has helped me immensely!
S Specks
Barbara T Specks you are then! When I read back, I see I also felt very lost and alone. My ex husband (married 25 yrs, divorced 34 yrs) was a great help when I got home from hospital. He saw everything that I went through and was so kind. I couldn’t have done it without him. He also looked after my precious doggie, Rupert. Picture attached…of Rupert not my ex husband, [ more ]
Specks Wow-that was more than 5 years ago. It looks like we've both come a long way! Thank goodness for that! I will definitely look up Dr. Keane. And no, Specks is not my real name. I'm not usually a poster in forums like this and when I joined this group I was really desperate and felt very alone. I figured it was appropriate to use a pseudonym, so picked the name of a stuffed animal my kids gave me:-) My real name is Rebecca, but I kind of like going by Specks:-) [ more ]
Barbara T Yes Monash uni is the place for all we need to know. I was part of a world wide research project into LARS run by Dr Celia Keane who wants to change the questionnaire that gives a score on LARS severity and also making the medical profession aware of this syndrome post iliostomy. She is in NZ. If you google her you’ll see the work she is doing. I am aware of these 2 websites. During the nearly 8 years I have spent many long hours looking for help. I agree there is much more low FIDMAP stuff... [ more ]
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J-Pouch ForumsHelp! Need advice now!
bad cuffitis! my doc has given up! Please help!!!!!
J jd9998
Barbara Anne Last month I had razor blade pain that I think was from anal fissure & hemorrhoids. I don’t know, maybe cuffitis? It’s been an ongoing problem for years. When it’s bad I do hot sitz baths & then I started using Calmoseptine ointment after every bowel movement and it has worked wonders! I also have a bidet. I tried many other things & I can’t believe how much the Calmoseptine helped. Bought it off Amazon. [ more ]
SteveG @rcrossco_1 make sure it really is cuffitis and not an anal fissure. I misinterpreted my anal fissure for several weeks to be inflammation. If you do an enema with water only and the sharp pain vanishes, then it's likely to be a fissure where some particle got stuck and flushed away by the water. Using a bidet / shower after a BM can also help with that. If it is cuffitis, you could also do a budesonide enema or apply cortisone foam. [ more ]
jd9998 ❤️
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J-Pouch ForumsGeneral Discussion
Internal intussusception of rectum
lclassenlclassen
Scott F I’d suggest consulting another surgeon for another opinion, unless you have reason to believe that the weight loss will be pretty straightforward. While it’s true that many surgeries are easier and safer when body fat is low (or lower), it’s also true that surgery tends to be needed by people that exist, rather than imaginary future people who weigh less. [ more ]
lclassen Thanks Scott. That sounds very much like my symptoms. After a physical exam, the surgeon stated that she won't do surgery until I drop the weight. So, that's gonna take a while 🤔. Thanks for the help. [ more ]
Sara Marie ❤️
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J-Pouch ForumsGeneral Discussion
Experience with Dr. Jason Hall in Boston?
S scallop
Portia Dr Bharati Kochar—caring, compassionate and dedicated to patient care. Wishing you all the best in your journey! [ more ]
scallop Thanks so much. Who is your g.i. doc at MGH? [ more ]
Portia Hi @scallop , I’m not familiar with Dr. Hall and haven’t heard anything about Tufts’ work involving j-pouches, but I can tell you that MGH has been doing research and procedures for many years, including a well regarded center for gastroenterology. Dr. Kunitake took over from my surgeon Dr. Becker (he did my jpouch over 32+ years ago) when he retired, and I have heard many positive things about the surgeons practicing there today, including Dr. Kunitake whom I have met. I am a patient of the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Too many nuts
chili123chili123
Claudia S My surgeon shared caution with popcorn also. He had a former patient come in to ER after attending a ballgame and consumed a bucket of popcorn. [ more ]
Winterberry Chili, try to resume your regular meals as soon as you safely can. Don’t be afraid to eat, and make sure you get your proper nutrition. I stopped eating properly for three months after I had twisted guts and emergency open surgery. I was afraid to eat anything tougher than macaroni and cheese with a morsel of chicken, and jello. I gave up all vegetables, meat, eggs, protein. At the three month mark, my hair started to fall out. I was under such stress with family matters and trying to avoid... [ more ]
chili123 Thank you everyone. I do believe it was the nuts that wouldn't pass. Cat Scan showed no blockage although ER doc thought it may be early. Ended up having 2 thick bowel movements and then 2 not so thick within 30 minutes so I was sure it passed. I came home Friday afternoon and have stayed on all liquid diet because I am nervous to eat but also still feel sensation in the tummy....I think just my intestine is still swollen from the inflammation is what I am thinking. Today is Day 4 of all... [ more ]
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J-Pouch ForumsMen's Health
Rectal stump hurts and bleeds
M Mark473
Sara Marie Thanks for sharing. This is horrible. I feel like my sexuality was also reduced so much by this surgery. Nerve damage to my lady parts reduced my ability to feel and scar tissue near the anal opening has caused penetration to be similar to the first time much of the time, which is....uh...distracting. How many hymens can one person regrow? Yeah, docs don't really care. Half the time they seem like they don't think women should even enjoy sex! WTF?!? [ more ]
Sara Marie ❤️
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J-Pouch ForumsHelp! Need advice now!
closed-loop obstruction.
K KS
SteveG It's always good to have a second opinion with such problems. I hope your 2nd scan will reveal more details. Some more questions: Have you yet tried antibiotics as suggested in some of your recent posts? They can help a lot with bacterial overgrowth and bloatings / aching. Do your blood labs (CRP) show signs of inflammation? Did your recent pouch scopes also cover the last part of the small intestine? My exams always reached 40...60 cm inside. And for some reason the small intestine was... [ more ]
KS This is what my Gastro sent me. I am so pissed he is soo casual about it. 1. it took him 2+ years of my constant nagging of pain and bloating to finally get CT scan. 2. and then he forgets to add rectal contrast, which means I need to get the same scan again! I feel we are just a number to these doctors, and not real human. Working on getting a new gastro if possible! ----------------------------------------- I looked the CT over with a 2nd radiologist. I don't believe that this is a closed... [ more ]
SteveG Sounds like the stricture is way above the pouch, but I can't tell if it is around the old stoma site (as they call it "anastomotic"). Anyway you should ask you GI doc or the doctor who did the CT scan what kind of measures he / she would advise. A closed loop would mean a distended piece of small intestine between two narrowings that are close to each other. The report mentions only one stricture. And it would be interesting to know the residual diameter of the stricture, as it could cause... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain with prolapsed and floppy pouch
S SamG87
LV2Hike Although this post is over 2 years ago, I'm wondering if you ever got the biofeedback, bc I too have paradoxical contractions and a floppy pouch, causing incomplete emptying and leakage, diagnosed by Dr. Bo Shen. I couldn't go through with the first biofeedback visit bc they couldn't get the probe through my anus, it was such excruciating pain. So I told Shen that I am going to dilate myself slowly with a set of Hegar Dilators until I can get 18 mm up me without pain. I'm barely up to 16mm... [ more ]
SamG87 Thanks Scott, I really appreciated it. I’m also assuming there’s a second issue going on but I didn’t have an inkling on what it might be. I’ve had fissures before and it does make sense that this could be one, albeit in a bad spot. Luckily I’m talking to Dr. Shen on Thursday (and even more luckily I live in NYC) so I’ll ask if he thinks that could be it. [ more ]
Scott F Sam, I wonder if you’ve developed a second problem. You might have developed an anal fissure *because* of the excessive sphincter contraction. If that’s the case you’ll probably have to get the fissure healed before you’ll be able to tolerate the biofeedback. If I were in your shoes (and confirmed a fissure) I’d consider Botox injections (in addition to the other measures to comfort a fissure, like sitz baths). They are normally not the first choice for anal fissures, and sometimes it’s hard... [ more ]
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J-Pouch ForumsGeneral Discussion
Bitters and Drink your food/eat your drink
K KS
KS oh wow! glad something is working. for me high protein diet kills my tummy [ more ]
Jaypea I changed my diet and cut out carbs and sugar....whoa! What a difference. No more bloating. I follow a sort of keto diet and have had no issues. I do have sugar and carbs on occasion because life on keto is tough as I fly around the world for a living and am without my own kitchen for days on end. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gall bladder removal/sternum pain/ pouchitis
Q qdm
qdm Karrine, do you also feel the only way to manage the pain and diarrhea is to be on cipro. I can’t figure it out. It seems the cipro definitely does something in my system that helps. But, I don’t want to stay on it forever. I get really an intense pain and burning in my stomach in the night also. Have you experienced this? [ more ]
Karrine I am going through the same issues. I had my reversal 24 years ago. 6 years ago I had my gall bladder removed and have been on acidic blockers but they don’t work anymore. It is like having an ongoing gall bladder attack - every night for three months. I have a couple of other medical issues that I need to work through but figuring out how to overcome these new challenges the gall bladder removal have caused is high on my list. [ more ]
Scott F Yes, that’s a lot of acid blocking. If you’re having breakthrough pain (which is what it sounds like to me), then it could be a few things. You might need to try a different acid blocker (i.e. they aren’t working any more), you might have gastritis or esophagitis or an ulcer, or one or two other things. I was in a similar situation earlier this year and I chose to have an upper GI endoscopy, mainly to ensure that my years of reflux hadn’t caused a Barrett’s esophagus, which presents a cancer... [ more ]
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J-Pouch ForumsGeneral Discussion
CANDIDA
therealstingertherealstinger
therealstinger Thanks for the replies, Good info. [ more ]
Sara Marie I wonder if diflucan would help. I used to take it for stubborn vaginal yeast infections and I took a shit ton of it when I had a yeast infection throughout my entire alimentary canal when I was in the midst of the "take-down". It seemed to work. I haven't had this medication for almost 20 years but sometimes I think of it because I still have bouts of yeastiness. I suspect I have a bit of systemic yeast. [ more ]
Scott F SIFO doesn’t generally cause coughing, as far as I can tell. My chronic cough turned out to be difficult-to-diagnose asthma (I needed a test called a methacholine challenge). The treatment of SIFO (if you have it) would be prescription anti fungal therapy and/or discontinuation of the acid blockers (they seem to be implicated in SIFO). Most antibiotics don’t generally treat fungi, and might make it worse. The antifungal treatment hasn’t been studied very well, I think. [ more ]
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J-Pouch ForumsGeneral Discussion
How Bad Is Flagyl on your gut biome
BobishBobish
Bobish Interestingly i see that a recent (2018) study shows that taking probiotics to recover from from antibiotic treatment could actually be counter intuitive... gah....theres never any clear answers is there.. Post-Antibiotic Gut Mucosal Microbiome Reconstitution Is Impaired by Probiotics and Improved by Autologous FMT Basically the prevleance of a few strains of good bacteria that you have supplemented hinders the ability of other healthy strains to get a foothold. People who didnt take... [ more ]
Bobish Awesome cheers for the reply Scott. [ more ]
Scott F It's not at all clear what microbiome is best for a J-pouch, so there may not be much reason to guard it quite so carefully. If your doc saw pouchitis it might be best to treat it, but you could choose to wait until symptoms appear. In my experience the symptoms sometimes came on so gradually that instead of noticing that I have a problem my life just slowly got worse and worse. I've been on Flagyl for years now, and I care a lot more about my quality of life (which is excellent) than about... [ more ]
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J-Pouch ForumsGeneral Discussion
Has anyone treated SIBO successfully?
FM Former Member
New577 Early on I thought I had pouchitis. I tried Visbiome, it did not help, so I abandoned it as a therapy. My GI explained to me that the small intestine (specifically the pouch) was going to get populated with bacteria that was never meant to be there, and thus probiotics to counter that bacteria. I never understood the whole science behind it, and never understood how a hydrogen breath test diagnoses SIBO but the 1-2 month course of bactrim for my UTIs ended it and it has not returned. I’ll... [ more ]
Scott F Docs are telling J-pouchers to take probiotics because studies have shown that probiotics reduced incidence of pouchitis. VSL #3 and Visbiome are lableled specifically for J-pouchers. I understand that Dr. Shen may now be recommending a different approach to his patients, but let's not overstate this. There's plenty of uncertainty here, and humility is warranted. I'm not aware of evidence that probiotics (or yogurt, for that matter) cause SIBO. [ more ]
Pouchomarx just curious if you were on probiotics before you were diagnosed with SIBO? cuz probiotics are not meant for the small intestine and can cause SIBO actually. Not sure why docs are telling jpouchers to take probiotics. Dr Shen states not to and instead do green tea extract instead [ more ]
See all 25 replies...
J-Pouch ForumsGeneral Discussion
Pain around old stoma site 1 year after j-pouch takedown
FM Former Member
Kushami Regarding mild pain at the old stoma site – I had that for many years after takedown. I believe it is not uncommon for us to have mild pain there. Can’t comment on the hernia aspect. I seem to remember reading that hernias are sometimes porrly understood, so if you are still concerned you might want to track down a hernia expert. [ more ]
Former Member I have had two doctors feel the area and say it’s not a hernia, but idk. Hopefully just scar tissue [ more ]
SteveG Have you shown that bulging out to your doctor? That really sounds like a hernia. Though a hernia does not need to be associated with pain. Mine is unremarkable for 5 years now, it is above the belly button and it bulges out when a pressure builds up inside. For example when doing a movement as you described. But that mild pain may also be related to scar tissue, as your doctor suspected. [ more ]
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