CTBarristerWas finally able to schedule my Covid vaccine dose 1 at Walgreens Saturday March 20. Does anyone know if Walgreens gives you a choice of Pfizer or Moderna or do you have to take whatever you can get? Was able to schedule both doses in one shot on their website but they don't let you choose the vaccine. My second dose is Saturday April 17. I am assuming that because both doses were booked in one shot that they will keep my second dose stored in their cooler until April 17. [ more ]
Jan DollarI would like to point out that it is not exercise per se that prevents blood clots, but simply movement does. Or, more correctly, being sedentary is what promotes clots. So it is important to get up and simply move around every hour or so. This is particularly important when flying on long flights or driving long distances, when we tend to sit longer than usual. I did not want people to think that they need to perform any particular “exercise” to prevent blood clots. A daily walk is great as... [ more ]
Former MemberHappy to hear that! And I will! [ more ]
PouchomarxPrevious laboratory studies suggested that milk thistle may benefit the liver by protecting and promoting the growth of liver cells, fighting oxidation (a chemical process that can damage cells), and inhibiting inflammation. However, results from small clinical trials of milk thistle for liver diseases have been mixed, and two rigorously designed studies found no benefit from www.pscpartners.org fyi [ more ]
Former MemberThank-you for explaining! And sorry to hear about your bother He is in a better place. [ more ]
rosevioletA few more details about milk thistle. If you go to the NIH (National Institutes of Health) website and do a search for "silymarin/silybin & liver disease" many articles appear. One such abstract (which I couldn't cut & paste for some reason) is "Silymarin/Silybin and Chronic Liver Disease: A Marriage of Many Years." By Federico, Dallio, Loguero; Jan. 24, 2017. From my reading, it seems that it's milk thistle seed (not the leaf) that contains the portent ingredients. Silymarin is a... [ more ]
Former MemberInstalling this bidet takes 10 minutes with no special training, and I cannot see why it would bother your tenants, since they don’t *have* to use it: https://www.google.com/aclk?sa...DegQIARA-&adurl= if that does not work, then you can get one of these for your personal use: https://www.google.com/url?sa=...AfLTz2olCoaMroqgY6kS You don’t need to put a solution in this bottle, just plain water does a great job. All other additives could cause build up and possibly a yeast infection. Even... [ more ]
Former MemberI have used convatec sensi care skin barrier cream, that is specifically for rectal surgery people. I use baby wipes for my booty hole and that helps since I go 14-20X a day. The remedy you made up sounds perfect! [ more ]
FAPqueenIn currently using a zinc cream and honestly I think it’s making the problem worse and not better. Also have considered a bidet but I have several tenants renting rooms in my house so it’s not possible at this time [ more ]
ytcrockpotGlad to hear your doing well in these tough times of covid. What ever makes you less stressed and feel good, keep doing it. Cheers to you! 🍹 [ more ]
tfThere's NO choice & what a ridiculous question. Having ur original parts is how u were created & replacements will never b the same. I would want my colon back healthy in a heartbeat than to live like we have to without it. I wouldn't wish this on my worst enemy. I would never had this surgery unless it wasn't for to save my life. I say to anyone out there do your best to change the outcome with diet or any other means if u can before ever having ur colon removed!!! [ more ]
Jan Dollar“...to hear it holds food for up to five days sounds unhealthy given the amount of food people can consume these days.” The primary purpose of the colon is to absorb water. It does absorb some nutrients too, but the lion’s share is done by the small intestine. So, it really is untrue that a colon is unhealthy to have. Dehydration is one of the primary issues associated with colectomy, so nobody will be advocating preemptive colectomies. Jan [ more ]
NoColonKenI hope this wonderful procedure gives you relief from that horrible disease. I know some people have different results, but 40 years ago I was you. Early in my sophomore year, I started having symptoms of what I learned was UC when the symptoms got very bad. If I maxed out on prednisone, I had an almost tolerable existence, but the minute they tapered me back to less than 25mg per day, I would end up in the Hospital. By Fall of my 3rd year it was bad enough that I could not complete a whole... [ more ]
Glenys DHi, I had my j-pouch in 1992, and yesterday a good friend reminded me how sick I was back then. I couldn't make it to her wedding I was so sick but my parents went along to the reception instead! She said it's amazing how well I've been now-a-days. And yes, I'm studying my PhD full-time and working in a casual job. I exercise and socialise and enjoy life to the full! Hang in there! The surgery changed me from a young person who didn't have the energy to work and volunteered only 1 hour/ week... [ more ]
LesandiegoIt's definitely a "shock" to your normal healthy lifestyle. My colon was removed in emergency surgery @ age 49. Since then, I have had 2 pulmonary embolisms, congestive heart failure, 3 stents, and nearly lost my right leg in a car accident (now held together by pins and plates). Today, I have 2 new grandchildren, work a 30 hr per week, travel, walk up to 3 miles per day, foster senior rescue dogs, and enjoy gardening and DIY home improvements. That which doesn't kill you makes you stronger... [ more ]
JaypeaStomach ulcers are sometimes caused by bacteria, helicobacter pylori and are treated with antibiotics. Has this been recommended to you? [ more ]
Former MemberYour welcome! And I totally agree! Its weird how IBD affects soo much of our life, but then again, that is what makes us more resilient! [ more ]
Scott FThanks - you learn something every day (if you’re paying attention). The gastritis treatment would be the same, of course. [ more ]
Lou PhillipsHaha, timing is everything, isn't it true. Brings back a fun/scary memory, in my early days of J Pouching I was told sweet potatoes are packed with nutrients. Very true. But - prior to that, I had only had mashed sweet potatoes one time, and loved it. I bought one, and thought mashing just one sweet potato made no sense so I baked it, added some salt and pepper, and some olive oil....and ate the whole thing, skins and all - like a regular baked potato. It tasted awesome. But then, I think... [ more ]
CTBarristerGood luck Lou! I saw this thread and it was ironic because I just bought the Yukon Golds today. The Russets are ideal baking potatoes due to the coarseness of the skin, but I think you can bake the Yukon Golds just as easily and handle the skins better because they are not as coarse and leathery. Let us know how this experiment works. [ more ]
Jan DollarI have mixed feeling about this. I 100% agree that focusing on electrolyte replacement in the presence of severe diarrhea, particularly with short bowel syndrome. I also agree that consuming potassium rich foods and electrolyte replacement fluids are completely safe. People who have known advanced kidney disease know their limitations. My only concern would be for people who misinterpret a recommendation to apply to any source of potassium. We have a wide variety of people here and some may... [ more ]
Former MemberGlad you are doing good! Potato chips help too [ more ]
Former MemberYour welcome And Okay, hope everything works out, keep us updated [ more ]
vince66thanks for the reply / my lower GI Dr says about what Jan says - give it a few days and if blood does not subside contact him again /// Physically I actually feel great - no energy issues at all / walk 3 mi each morning and 2 mi each afternoon (69 yrs young) [ more ]
Former MemberIf I were you, I would contact the doctor right away. Hope you feel better hon. Keep us updated [ more ]
Jan DollarI have had these sorts of random pimple lesions. One time it was inside my nose and wound up being a major abscess that went into my lip. I have also had leg lesions that seemed like erythema nodosum associated with chills and fever. But it all seems so random. It has been treated on a case by case basis for me. I never was advised to stop my biologic except for the one time I was on antibiotics when my infusion was scheduled. In that case, it was just a one week delay. I suppose it could... [ more ]
Former MemberI learned something new! Thanks! [ more ]
temotyMy sister believes I have 'cystic acne' causing these boils inside nose sometimes and elsewhere. She is a PA. She also reminded me that UC has been linked to cystic acne. Anyone have this issue? What helped you? Thanks [ more ]
Former MemberSo you have around 6bms I see. Have you expressed your pains to your gastro??? Or SUrgeon??? [ more ]
Former MemberHi Lauren I probably had four trips at work and two at home so far with bad gas pains.I had a hard job at work that didn't help.but I look around and everyone else is in pain as well.with either hip,knee,shoulder ,teeth,gout,eye or obesity,depression problems.not to mention the relationship and job, financial pains [ more ]
Former MemberLol, glad you are okay. How many bms a day do you have??? [ more ]
Former MemberI think we should have that choice but life is not always fair. [ more ]
Former MemberShould a Jpoucher have the choice between going back to work or disability? As I'm in pain most days now due to gas I think and am unable or feel bad telling my coworkers I'm in pain and the the pain can be bad.im trying to eat healthy but it's the poor diet that is less painful. [ more ]
Scott FNone of this is proven, or even likely to help much. Some of it may be worth a try if it doesn’t cause you significant side effects. Stomach pain is a good reason to say “never mind.” If you want a proven treatment for early-stage mild-to-moderate COVID-19 then a monoclonal antibody cocktail, such as Regeneron’s bamlanivimab, is an option. They are inconvenient to take, since they require an infusion. Zinc *lozenges* (not capsules) might help shorten a normal cold, perhaps by reducing virus... [ more ]
Brad EppsFirst off, thank you all for replying. I have been struggling mentally a bit as well and it is nice to have others who understand what is happening helping me. I very much appreciate it. Eliza, I will definitely look into the steel cut oatmeal. I normally eat regular oatmeal right now but I am willing to try anything that may help me. Scott, I haven't tried the fatty snack before bed but I will starting today. It makes sense why it may help. I already take two bowel slowers before bed as... [ more ]
Former MemberI was having accidents sometimes at your stage in the game, but I think you should still get checked out to be safe. [ more ]
JPouch2017Long shot, but wondering if anyone on this thread who had a hernia repaired with mesh is still on the board and can fill me in on if they are having any issues? TIA! [ more ]
TE MarieYou had a big hernia too. My surgeon opened up my surgical incision all the way to do the hernia mesh surgery and I woke up with around 14 staples and one incision. It sounds like he needed to cut you open more too. I had to stay over in the hospital 3 nights and was planning on less than 24. Did they put an abdominal wrap on me and I wore it for a few months. I don't know why they didn't have me use one after the surgeries. [ more ]
JenniferGcorrection, zero shoulder pain. I had plenty of pain but I dont think it was gas pain. [ more ]
Stephen J. Thompson, MDThanks. I think my over-indulgence in pretzel nuggets may be part of the gas problem. Just a theory. [ more ]
Scott FI think it’s psyllium husk, like Metamucil or Konsyl. I’ve used it every day since my hospital discharge (except for the several days off I needed to verify that it was helpful). [ more ]
temotythanks so much everyone....I'm probably switching from Entyvio to Remicade soon. My Doc said she's seen plenty of patients take Remicade for a while and then go off for a while after they get better. So we will see...... [ more ]
Jan DollarWell, this is a tough one. As you probably have noticed advice and experience varies widely. One person’s experience does not predict another’s. The advice can be helpful or not. That said, my take on the whole biologic issue has been that they are worth trying and the trend now is to use them earlier with IBD in general to avoid surgery when possible because they are that safe and effective. Most of the adverse effects are reversible when discontinued, and the lymphoma risk is quite slight... [ more ]
Former MemberWhatever happens, I have faith in you, you will get through this [ more ]
Former MemberNo matter what we say and no matter what proof we post, there is always going to be people that do not agree or say things against it as you can see. I am just happy that there are people on here that believe in the evidence and have positive things to say about the topic. I am happy there is a audience for it. Thank-you for your answer, it helped a great deal [ more ]
CTBarristerThat's the question I have- how does advancing an explanation, tenuous or otherwise, advance or assist the treatment? I see lots of posts about causal relationships between mental illness and IBD but no posts on how any of that guides or assists treatment, in any way. [ more ]
JHendrixMy gastro doc also recommended biologics just to see if it would help heal the fistula even though no one (him, surgeon or me) really thought I had Crohn's. We all thought it was worth a try. Maybe it is for you as well. I truly hope you have success with it. [ more ]
baredexi actually just had another abscess drained yesterday. the doctor thought it might be a new fistula, but it turns out it wasn’t. both my colon rectal surgeon and my gi doctor want to put me on some form of biologics even tho my tests came inconclusive as to whether i have crohns or not. [ more ]
JHendrixBaredex, how are things going now. Do you have any better idea of what's going on for you? Any plans? Thanks for an update. Trishp, I also go through the cycles of settled and active but haven't been able to see any particular pattern. [ more ]
hanrasI cycled thru all biologics oral and IV. If I were to describe them it would be: Remicade is the old school and rough Humira always tries but falls short Entyvio is the latest and greatest Stelara is too new to be trusted *Just my experience. I didnt include oral bc I did not tolerate any for more than 60 days. I have heard great things about all of them but remicade was the worst with side effects for me. [ more ]
jennersFollowing. After about 20 years with j pouch just had massive reconstruction surgery on it, feeling great after but scope today said loads of ulcerations and the stricture the surgery was supposed to fix is bad again, 3 months later. They are saying Crohn's and advising to go on biologics immediately [ more ]
Bubba1028Oh dear- so sorry to hear that! I guess you’re looking on the bright side! I hope it’s resolved soon! [ more ]
JHendrixI have a pouch vagina fistula. There is an upside to everything! I don't have to worry about getting to a washroom or lying down to pass gas. It blows right though the fistula. Oh lucky me. I have absolutely no control over it and it is horribly embarrassing sometimes but at least I don't often develop those horrible back up gas pains! [ more ]
MommaWell we are here now at Dr Shen. My son thought that it was worth trying as it’s relatively harmless with minimal risks. My son’s sinus is not part of his pouch as his pouch was removed, twice. It’s a blind/ dead end sinus at the rectum that doesn’t connect to anything but it still leaks. Remzi can do a flap surgery but it is huge surgery with many risks and long recovery so he will give this a try. I’ll post back later if it works or not. [ more ]
Pouchomarxhe typically does that for bleeding, which he has done those for me in the past for that issue. I had a sinus with my first jpouch and he performed several needle-knife therapies for that. I would ask him to clarify as a glucose/doxy will not fix a sinus. [ more ]
Former MemberDefinitely trust Dr. Shen, that man is amazing!!! [ more ]
JanW2Hi, I recently saw Dr Leyla Maric at CCF Weston and she does see pouch patients. Was only my first visit but she did take her time and was knowledgeable about pouches, both Jpouch’s and even K pouch’s, which I have had both of. Weston is just outside of Ft Lauderdale Are you new to the area? Be glad to be in touch with you, Janice [ more ]
Former Member❤️
Former MemberAre you willing to travel to Tampa, is that possibly an option??? [ more ]
Former MemberSo great to hear that!!!! I cannot wait!!!! Ostomy belts work wonders! Definitely less leaks!!! And a better seal!!!! I am doing great! Just celebrated 11 years of having IBD [ more ]
JoeJoethank you. The appointment went great. The other day I got an ostomy belt that worked wonders. The surgeon said I'm fine and still on schedule, thank god. I hope you are doing well too. [ more ]
KmillerI eat pizza all the time with no issues. I generally just do meat, no veggies. [ more ]
CTBarristerI have no problems eating pepperoni or any other kind of pizza but I do try to limit my consumption of carbs. Also, I have tendency to binge eat with pizza and ice cream so I really try to pick my spots. I was able to recently limit myself to trying one slice of pizza when my firm ordered pies from a new local pizzeria. But it's not easy for me to do. I was helped by the fact that the new local place was average by the standard of local New Haven style pizza, which is world famous. If I go... [ more ]
Former MemberThank-you so much!!! I think these articles are excellent proof that even though our colon/rectum is gone, we still have autoimmune disease too. Surgery is not a cure. Hopefully one day there will be a cure. I have donated lots of money and started a fundraiser to find cures, hopefully one of those dollars will find the cure! Love the articles, I am going to bookmark them [ more ]
Former Member❤️
ytcrockpotThanks for sharing, apparently my doctor was one of the researchers on this NYU study. It’s gives me hope! [ more ]
Newdad5152That’s great that you’re getting healthier! This may turn out to be easy peasy...truly hard to predict. Even when it’s challenging, a few months later it becomes a distant memory. Keep up the spirits and I’m sure you’ll be fine! And if the ostomy is leaking - try a convex with a tight belt! Totally changed the game for me. [ more ]
JoeJoeHope you get well soon. I'm getting a little nervous about the second surgery coming up in a few weeks but I'm also looking forward to getting it done. Some scary stuff you went through. I've been trying to do everything to stay healthy and get ready for this. I walk every day, eat well and dropped 5 pounds because I was gaining weight. Thanks. [ more ]
Former MemberOh my goodness!! I am sorry you are going through this. I see this quite a bit on here. I hope everything goes well and please keep us updated on what the surgeon says. I will keep you in my prayers, good luck on Wednesday Hon [ more ]
Former MemberGlad you found something that works! I have been a vegetarian for almost 6 years, that works best for: me, the environment, and the animals [ more ]
Former MemberYou are welcome my dear!!! Whenever I get depressed, I think about the things I am grateful for, that always picks me up whenever I am down, I think that might help you too with every bad memory, replace it with a good memory or good thoughts and grateful things Oh good, thanks! I always love it whenever people keep me posted Good luck!!!! [ more ]
Francesca2020Thankyou! I'm glad someone does ! Haha jk doing my best. My new thought process "is why not me " better me than someone else. Not 100% sure what day next week. But asap. I'll keep you posted 😀 [ more ]
mamaswansI take VSL #3 on a prn basis. My gastroenterologist frequently has samples that he generously gives me when i need them. It is terribly expensive, but is the best solution in my experience to calm a cranky j-pouch and get it back to "normal". Don't be afraid to ask for samples! [ more ]
Scott FCareFirst BlueCross has moved the location for their policy statement supporting the coverage of VSL #3 DS in the maintenance of an ileal pouch. It looks like it’s now best approached from this link: https://provider.carefirst.com.../medical-policy.page Click on the “Medical Policies” button and search for “Probiotics,” and select the Probiotics document from the list (of two). I think the site really wants you to agree to the disclaimer that sometimes shows up. Insurance companies aren’t... [ more ]
Scott F"Natural " sources of probiotics tend to have bacterial strains that are largely killed by the acidity of the stomach. "Manufactured" probiotics tend to select strains more likely to survive the journey to the pouch. Or so I've read. [ more ]
Scott FExperimentation with fiber is very useful for folks to find out what works best for them. Psyllium is actually 70% soluble fiber and 30% insoluble fiber. Here’s some more detail from a Mayo publication: ”Fiber is classified as soluble or insoluble. Soluble fibers are more fermentable and may cause gas. Insoluble fibers move through the digestive system largely intact, and that can increase stool bulk. Most fiber supplements are exclusively soluble or insoluble fiber. For example, FiberCon... [ more ]
Former MemberI tried All-bran cereal from Kellogg’s a few days ago, and it dropped my frequency significantly. I ate a 1.5 cup bowl with milk, and I heated the cereal in the microwave for a minute, as I usually do with harder cereals. However, I read here on this forum that all-bran gave some pouchers terrible obstruction! So be careful! I guess I did not have issues because I heated it like instant oatmeal, and it was easy to chew. One member said that their Dr recommended only 1/3 cup a day. So, I ate... [ more ]
PouchomarxNOT GETTING DENTURES,,LOL, already invested a lot of money in my teeth. Braces at 35 years old and have perfect teeth. and no gum or bone disease. [ more ]
Former MemberDid you brush with a hard tooth brush back then or did you brush your teeth over 2 minutes??? A soft toothbrush is always recommended over hard toothbrush. Brush time is usually recommended at 2 minutes. I am sorry to hear all of that as well! I could not imagine paying for all of that! Would you like to get dentures instead??? [ more ]
PouchomarxI have bad gum recession. I do not have gingivitis or periodontal disease. Periodontist said usually with as much gum recession most have gingivitis or periodontal disease but I have neither. He said the recession could be from aggressive brushing over the years or could be hereditary. I know my dad had full dentures by age of 40 so I am guessing its that. I had 4 teeth done 5 years ago and it was horribly expensive. I followed up today and he said I have 10 teeth that need done or I may... [ more ]
Former MemberGlad you are okay honey!!! Maybe you should not use masks at all, just a opinionated suggestion. [ more ]
BridgetBUPDATE: Thank you to everyone for replying. I finally got a dermatological diagnosis and it is, in fact, a form of eczema (caused by friction and moisture due to mask-wearing). I saw 2 other clinic doctors prior to the dermatologist and perioral dermatitis was on the differential, but it turns out, it's not that, and 2 days on the correct topical treatment has pretty much cleared it up - there's some discoloration but that will fade over time. I have been advised to wear barrier cream under... [ more ]
tfHi, I have been dx with siob & was put on Rifaximin: is a broad-spectrum nonabsorbed rifamycin antibiotic with an excellent safety profile, a lack of drug interactions, and minimal effect on the intestinal microbiome. This gut-selective antimicrobial is currently approved. It's very expensive & tried a few times. I tried a herbal formula of this for over a yr. (Can't remember the name). It did help. When I get a lot of gas & bloating I can tell it's back. Diet is key. Also, I... [ more ]
Former MemberI have experience with natural probiotics, I am not sure if that counts for an answer but I hope it does. I eat Oatmeal for a prebiotic and Greek Yogurt for a probiotic, I never had pouchitits either. Some people on here take Align, you can get it at a grocery story, I see it at Target all the time. Sometimes its even on sale for a MAD good price! I hear Kefir drinks are good for you too [ more ]
Maggie4Hello, Adrina, good morning! How exciting that this is coming up for you, just wonderful - with an amazing doctor. Would you be able to ask him, or someone on his team, your questions, and then post the answers here for us to learn? I am sure he/they can give you your options. I'm so happy for you!! [ more ]
Former Member❤️
Former MemberI do not have experience in this but I just wanted to say: I know you have been suffering a lot lately, I hope everything works out! I just wanted to let you know you have been in my thoughts and prayers. Please keep me updated how things turn out, Good luck with everything! [ more ]
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.
Forum moderator and advisor Jan Dollar R.N.
General Disclaimer
This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.
Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).
Confidentiality
Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.
CCFA
The Crohn's & Colitis Foundation of America, Philadelphia, Delaware Valley chapter, is located at 521 Bustleton Pike, Feasterville, PA, 19053. Tel: 215-396-9100
National CCFA headquarters are at, 396 Park Avenue South, 17th floor New York, New York 10016-8804 Tel: 212-685-3440 800-343-3637
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