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J-Pouch ForumsPouchitis
Chronic pouchitis
D dr
Janiep I’m so sorry that you’re going through chronic Pouchitis. I have that also but usually my cocktail of ... Cipro, Lomotil, Imodium and a medical probiotic called Visbiome helps me remain stable. This is prescription strength probiotic. I stay on a maintenance dose of 500 mg. Of Cipro but when I flare I increase to 1000 then taper back. Good Luck and feel better! Janie [ more ]
Scott F This sounds very difficult, dr. Has anything helped at all, even for a little while? Have you tried high-dose probiotics (e.g. Visbiome or VSL #3)? Have you tried a very-low-carbohydrate diet? Have you tried any other antibiotics, like rifaximin? The probiotics helped me, and continue to do so, but I didn’t see much benefit when I tried the very-low-carbohydrate diet. [ more ]
Former Member Sorry to hear about your suffering. Are you open to getting a permanent ostomy if things do not clear up??? And have you had issues with an ostomy in the past??? [ more ]
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J-Pouch ForumsGeneral Discussion
Do you have regular checkups years after surgery?
T tallcanuk
CTBarrister I should mention that for patients on Remicade, checkups are mandatory every 4 or 6 months as a condition of insurance coverage. And since it's likely you would not want to pay the $10,000 retail cost of a Remicade infusion in Connecticut, you would probably want to go for those checkups. My last one was a "televisit", as I was advised in this Covidian Era we now live in that televisits meet the insurance requirements. [ more ]
lablover hubby gets about 2 or 3 checkups a year..(also depends if he gets pouchitis) [ more ]
Former Member Annual visits for me but my gastro said I should get a pouchoscopy every 3 years. I am not sure if I agree with that but that is what he said. I am almost 6 years in. [ more ]
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J-Pouch ForumsGeneral Discussion
For Wine Drinkers
N new2thisstuff
sofi I am a wine lover, was studying to be a sommelier when I got severe UC and ended up in the hospital, I noticed that with my ostomy drinking lots of wine (yes I'd drink 1,2,3 bottles during a weekend day with my partner) my output was LIQUID like, water, and now I have my jpouch finally! i've had it for 5 days, and i'm so afraid ill have to give up wine, or just constantly go empty my pouch while we drink (if at home ok but if we are out is kinda awkward?) so idk... wanted to know other... [ more ]
Cdub I get more tipsy on red, but I think that's just me more than the pouch! new2thisstuff - the best way to know for sure if something's going to upset your pouch is to try a little of it, safely at home. Might seem like asking for trouble, but I'm glad I've done that over the years otherwise I might have spent a long time denying myself some of the things I like! [ more ]
TE Marie 2 glasses of wine, I use to like white, or a vodka drink and I'm ready to pass out. It goes to my head immediately. I have a wine rack full of wine that's just sitting there as my taste for it left with my colon. It also left for some foods too. I'm in a ice cream phase these days, plus I can drive afterwards [ more ]
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J-Pouch ForumsGeneral Discussion
Bowel Twisting
S Safado
Former Member I am soo happy to hear that! Definitely take it easy and be careful when exercising. We have a delicate system so we definitely have to treat it delicately too. Soo happy you are okay [ more ]
Safado Doing so much better thanks! The first three weeks after surgery were rough but things got to normal after that and I’m back to eating my normal diet and there’s no pain now like there used to be. It’s great. [ more ]
Former Member Are you doing better Safado??? [ more ]
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J-Pouch ForumsGeneral Discussion
Sinus Polyps - mometasone furoate
C ccolbymontucky
ccolbymontucky Thanks Scott! Yes, def. keeping an eye on that. We think .6mg q.d. "should" be OK as most of the medication rinses out but I'll have an HPA/ACTH test in December. Fingers crossed! And yes, it sure is damn nice to taste my supper. [ more ]
Scott F You may be getting a significant systemic exposure to the mometasone through the saline rinse. I don’t know that it will matter, but my guess is that it will be higher than a nasal spray. I’d suggest keeping an eye out for any steroid side effects. It sure is nice to smell dinner again, though. It’s always worth checking the manufacturers web site for so-called “coupons.” They can drastically reduce the prices for some of these ridiculously expensive medications. I know there’s one for QNasl. [ more ]
ccolbymontucky Hi Scott! So glad this works for you and I will keep this on my radar if mometasone stops working (hope not). I had to fight to get xhance nasal spray; it was insanely priced at $547/16ml (almost the same as QNasl $283 /6ml)!!! The company sold direct to patients for $109 through an online pharmacy (still out of many's price range, mine included). ;-0 Crazy. Pharma. [ more ]
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J-Pouch ForumsGeneral Discussion
Workout - obstruction? Omega 3 bogus?
L LoveLife
Former Member I am soo happy to hear that! I hope your back gets better! I am glad that you are a lucky person, a lot of people are not lucky at all, myself included XD. And you are right about that, I need to do what you do and stop thinking about the future, that can be depressing. I am doing great, thanks for asking I am going to be celebrating my 28th birthday soon and my 6th year anniversary soon with my J-pouch. My birthday is October 6th and my J-pouch birthday is October 13th. 2 Birthdays to... [ more ]
LoveLife Hi Lauren, Thank you. Yes, I am doing ok. Living almost normal, though having issuses wirh my back. My doctor calls me 'one of the lucky ones'. I try not to think about the future and keeps my fingers crossed. How are you doing? [ more ]
Former Member J-pouchers definitely have to be careful with exercises. A lot of people in the community get hernias when they overdo it or even do certain exercises. We have to be gentle but active. A good way of preventing blockages is by drinking before, during, after every meal. And Chew Chew Chew. Those are my recomendations that are pretty popular. Are you doing better after all of this time??? [ more ]
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J-Pouch ForumsGeneral Discussion
Bloating
TS Taylor S
Former Member I get bloated like a Macy Day's Balloon after I eat lol and when my BMS come out its very loud hahaa [ more ]
PATRIZIA My bloating and gas is mainly caused by onions especially row. It took me 19 years to work this out!!! Pity because it is something I loved, I experimented cutting them out of my diet and the bloating almost disappeared as soon as I use a little the gas returns.. Now that I have a stricture I do have to be careful with eating cooked carrots as they don’t pass easily and cause a lot of gas and discomfort. good idea to try to eliminate something and see what happens. all the best [ more ]
Winterberry It could be the amount and the type of carbohydrates you are eating. Simple carbohydrates are pasta, white rice, boxed cereals, bread, bagels (bagels are especially dense and so they are pure, simple carbohydrate). These are all simple carbs that have little to no fiber so these foods break down quickly in your stomach, turn into sugar, and can cause lots of gas as they ferment in your stomach. When I eat too much pasta, it can cause lots of gas and bloating, unless there are lots of... [ more ]
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J-Pouch ForumsGeneral Discussion
MMA/Kickboxing/Boxing
OM Odhran McLeod
Former Member I personally would not do that due to the risks of extensive stuff causing a lot of risks but if you do, just be careful. [ more ]
Jaydog After my surgery i would like to get back to ju jitsu. I wrestled my whole life. I miss competing [ more ]
Scott F It’s not quite the same thing, but after my J-pouch surgery I felt well enough (for the first time in years) to train in a martial art. I took up Japanese Ju-Jitsu, and now I teach it. [ more ]
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J-Pouch ForumsGeneral Discussion
Vegan Recipies/Supplements/Cook Books
kalel83kalel83
Former Member ❤️
Former Member Today I brought some "Annie's Vegan Mac & Cheese" They were on sale for 2 for $5. It is way cheaper than "Amys". I have not tried it yet but its on sale at Target in the Mac and Cheese section. I brought two today but I have not tried it yet, looks pretty good! [ more ]
CTBarrister Here is another winning recipe for roasted cauliflower tacos: https://www.bonappetit.com/rec...xRFJRZTVLZHdKcUFhOGk . [ more ]
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J-Pouch ForumsPouchitis
Qing Dai - Experiment Working So Far
bionicbowelmanbionicbowelman
bionicbowelman Here is an update on my original post. The qing dai definitely seemed to help my symptoms (I was off cipro for 5 months) though my fecal calprotectin that my GI doctor tested to see if my inflammation was fully objectively gone still showed as very abnormally high. I also was using something called gastrazyme in conjunction with qing dai which seeems to be a pretty legit helpful supplement. I've had to take a round of cipro recently after I accidently ate some seeds which make my pouchtiis... [ more ]
Taichitwin ❤️
1993SPouch That's great! I use Siberian Ginseng (Wuchaseng). It is amazing. It's been over 20 years since I had pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
had my scope, can someone help explain this to me? ...
PouchomarxPouchomarx
Fight like a girl Trying to see if 4 weeks is what I need to heal with entyvio. I know stelara was the other option but being a cancer patient also I need to be cautious of returning. So for now..keep trying. [ more ]
Pouchomarx if that is to be expected then why are you on biologics? I also have Dr Philpott as well when Shen left, I like her but not comfortable with her yet and Dr Remzi told me to see Dr Dietz at University who he trained. [ more ]
Pouchomarx 2 years ago I had mass bleeding. Shen stated the bleeding was from the suture line midpouch. He stated there is lack of blood flow there normally and ulcers are common in that area, why mine bled he is not sure but he also used clips and injected (sucrose)or sugar, and plugged me up with a tampon for rest of day and that did the trick [ more ]
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J-Pouch ForumsGeneral Discussion
4 days post take-down
runner4449runner4449
jenners Just making my list of things to prepare for my take-down in 2 weeks, and I find it hilarious that i am writing "cotton-ball between butt cheeks" on my list!!!! love the details, and hope you are still doing well! [ more ]
runner4449 Chasingtime - I'm eating a gluten-free diet, which is a diet I've followed since shortly after being diagnosed with UC in 2006. I've pretty much eaten foods I feel safe with right now; applesauce, mashed potatoes, gluten free pretzels, gf toast with butter or almond butter, Udi's gf blueberry muffins, Anne's gf macaroni and cheese, bananas, yogurt, almond milk, and a protein shake made with Trader Joe's hemp protein, almond milk, banana, almond butter, and pure vanilla. Tomorrow I'm going to... [ more ]
Akk3769 Thanks for the advice. Who did your surgery? I went to the Cleveland Clinic and my surgeon is Luca Stocchi. I absolutely love him and love that hospital! [ more ]
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J-Pouch ForumsGeneral Discussion
Questionable hemorrhoid
GEB56GEB56
GEB56 Thanks Scott. You may be right. I also had questionable diagnosis of Crohn's, UC or indeterminate colitis. I had mouth ulcers and mild inflammation through stomach which labelled me Crohn's in 2008. The pathology on colectomy looked more like UC. I have a gastroenterologist who is new to me. My last one was angry at me for pursuing a jpouch and we just didn't see eye to eye. I am shocked at how few doctors know anything about a jpouch construction. I always feel like the educator. My surgeon... [ more ]
Scott F It might be a hemorrhoid, or it might be an abscess. Your frequent fissures may provide an opening for infection to develop. Hot sitz baths may eventually help if you stick with them. Do you have a gastroenterologist who can see you reasonably promptly, if you report that you’re in acute pain? [ more ]
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J-Pouch ForumsGeneral Discussion
12 hours without a BM.... is this a record
FM Former Member
Former Member My understanding, is what’s called Stool Withholding, which, I assume; is a psychological disorder and according to snippets I’ve read online, it appears to affect young children. As I believe it’s a psychological Disorder, then I assumed adults may suffer from such a condition; I also assumed that withholding stool in such a manner, is probably not very comfortable and may cause complications, as a result of withholding a mass which shouldn’t be withheld. However, my 12 hour record has... [ more ]
Scott F We’ve seen several strongly worded claims here that delaying bathroom trips can have serious consequences, but I’ve never seen a reputable scientific article that supports such a position. I’d be happy to read something that’s based on evidence. Without that supporting information we may be veering into either personal experience that’s being generalized in an exaggerated way, or (worse) overconfidence in unfounded speculation. When your doctor gives you advice it is often highly specific to... [ more ]
Rev Lenny strange, I always empty my pouch when it is necessary, I never hold back! If there isn't a toilet available then I abstain until I find one. It is unhealthy to hold it in, and can have consequences. These are my thoughts on the matter. I am now off to sleep............ Good night all, The Rev [ more ]
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J-Pouch ForumsHelp! Need advice now!
PT for dysfunctional sphincter?
K Kh1988
Kh1988 Aww, don’t feel embarrassed! It was very helpful advice so I really appreciate it! I’m using enema bottles right now, but your system you’ve got going sounds a lot better. I may have to give that a try! I’ve done a couple in office dilations. There aren’t currently any strictures. Just the dysfunctional sphincter/pelvic floor. I really hope the PT helps but I have a feeling it won’t hopefully someone will chime in that’s had PT for a tight sphincter and pelvic floor...I’d love to know what... [ more ]
3Cutedogs Hi! I wish your Dr. would consider a dilation "in office." I think it was actually my colo-rectal surgeon who did them. I remember him saying if they aren't done right they can cause fistulas? I developed fistulas/abscessed not long after I had the dilations. Not sure if it was related? I did end up with Crohns in my JPouch so the fistulas may have been because of this. I hope you can find relief... quickly. I am embarrassed to post the pics of my catheter but thought even if it could help... [ more ]
Kh1988 3cutedogs, thanks for the reply! That is very helpful info, I’ll have to look into that. I’ve been using miralax and tap water enemas to get by. It helps a lot but not completely. I asked my doctor about self dilating bc I’ve read about others doing that daily or weekly for strictures and even tight sphincter. She didn’t say No, but said she’d like me to try PT first as I could accidentally do damage to the jpouch. I’m with you, an empty jpouch is the best feeling! I’m sick of the feeling of... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Small Bowel Obstruction Post-Pregnancy
S swojnowiak
swojnowiak Second update: I spoke too soon. A couple weeks ago, about 5.5 months postpartum after having my second son, I developed another sudden, serious SBO. My bowel twisted itself in some scar tissue again but this time it was a closed loop obstruction. I was taken into emergency surgery and when the surgeon found the problem he told me that loop of bowel was black and dying. I was close to serious complications, including possible perforation. I am very lucky I went in immediately upon the start... [ more ]
swojnowiak Update for those interested: We were able to get pregnant a second time last June, and I had a relatively smooth pregnancy aside from a late Gestational Diabetes diagnosis and some repeat Gestational Hypertension this time around. I gave birth in March to a perfectly healthy baby and have so far had NO bowel complications postpartum!! I feel so fortunate not to have had to deal with a SBO this time around. I am hoping things stay this way. I have another surgery to face in the future to... [ more ]
jenners I had terrible problems with adhesions prior to my pregnancy, several terrible SBOs (often after flying, now I ONLY eat baby food and smushy stuff on flights), and one awful incident where my guts basically twisted, exploded inside me, was missdiagnosed as an SBO for 14 hours in emergency room before being whisked to surgery, 6 weeks in hospital, drains, tubes, complications, etc... needless to say I have a LOT of abdominal scars! I did IVF to get pregnant (because of scar tissue), but... [ more ]
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J-Pouch ForumsGeneral Discussion
FULMINANT COLITIS
CarlitosCarlitos
sofi Hello! old thread but I'm looking for possible causes for UC, I also had a very fast, very ill UC, went from living my best life to having no colon in less than 2 months, struggling for my life, living in a hospital, watching my body and mind degrade fast, it is, like many people have said, a living nightmare. I was humbled by this disease in ways I didn't think possible. But that's not the point, the point is that every person I have spoken about the disease asks me the same. WHY DID YOU... [ more ]
Spooky Carlos, your story is very similar to mine. Stress, however, does not cause UC, which is generally thought to be a auto immune disease, or else an extreme immune reaction to an environmental trigger such as a virus or bacterial. Stress can, however, make existing UC worse, but it it is erroneous to say it is the cause. I also became acutely ill very quickly and developed fulminant pancolitis. Prior to that, I had never had any indication of colitis or even IBS. I was a very active person,... [ more ]
Jan Dollar I also had fulminant colitis, but just out of the blue with no identifiable trigger. I responded well to treatment though, and did not need surgery for over 20 years. Extreme stress could be a possible trigger, but not a cause of UC. Bacterial infection in the gut can be too, so I guess that can be seen as environmental. Hopefully things continue to improve for you. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch & bathrooms
sofisofi
Former Member ❤️
Elisa W The bidet is available on Amazon, the Bondell Go Spa. Good luck on Monday! [ more ]
sofi wow thank you @Elisa W ! I will get a bidet like that when I can for sure. Sounds great, I guess I don't have to overthink this so much. Excited about takedown on monday. Thanks for all the advice !! [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy
M Marc218
Former Member I hope so. [ more ]
Former Member Oh cool, I see you have things all figured out! [ more ]
Former Member Throughout my time with the ileostomies, I would try to take one Loperamide at least 4 times per day and sometimes 2 just before bed or when I knew I would be out for longer than normal. Since J pouch surgery, my Surgeon said he likes Patients to work out the dosage for themselves, based on output and consistency but not to take more than 6 per day. Currently, I tend to forget to take the Loperamide as often as I should but I still try to take at least 4 per day; especially first thing in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible partial blockage
LoniLoni
Former Member You are welcome I hope you never get any blockage again, I hope you do well and perfect! Always go when you have the urge to poop as well, holding it in can cause blockages too. I know a few people that got one by doing that, so always go when you have a urge. Sending lots of love and light to you and I hope everything is perfect for you <3 [ more ]
Loni Hi all, Firstly, thank you kindly for your responses. With the hardship we all go through, it is comforting knowing a community exits that are not only willing to help and advise, but have personally experienced these situations themselves. I spoke to my GI yesterday who basically said I most likely have a partial blockage and it will go one way or another. He said the only thing I can do is drink plenty of fluids and put myself on a liquid diet (which I did). He said if it worsens of... [ more ]
Former Member Oh I forgot to say, sorry! Make sure to chew your food thoroughly. I know it stinks to chew extra long but it definitely helps. A lot of ostomates do that tactic and I think it would be perfect for J-pouchers too. Definitely give it a shot [ more ]
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J-Pouch ForumsGeneral Discussion
Early days post-surgery questions
Jen MarieJen Marie
Aimc I agree with everyone else so far. I also was on low fiber for about a month to six weeks. Maybe back off on spicy stuff for a sort while. It's always good to start to slowly add in new foods, then you will know how your new pouch will react to them. Good luck, remember to be kind to yourself and know with time things do get better. Aimee [ more ]
CTB23 I was on a low residue diet after each of my surgeries for at least a month and slowly introduced different foods especially after takedown. [ more ]
Winterberry Hi, Jen Marie. For the first 6 months or more after your takedown, and when you start using your J pouch, stay away from corn and anything else that is insoluble fiber. You can google "insoluble fiber foods" so you will know what to stay away from. It's not forever; just for a few months until your J pouch learns what to do and how to help you live. Corn, whether it is corn on the cob at this time of year when it is abundant and sweet, or canned corn or corn pudding. No corn. It does not... [ more ]
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J-Pouch ForumsGeneral Discussion
anyone get Ilex cream for a low price from insurance? name of company?
PouchomarxPouchomarx
Jfill21 I’m in same boat as Pouchomarx. Not only is Ilex paste an issue, but since retiring this year I can’t get coverage for Visbiome ES or a decent price on Canasa generic. These three are all pricey on a monthly basis. WellCare denied Visbiome because they‘ll only evaluate it as an OTC, regardless of strength. Extremely frustrating. [ more ]
Pouchomarx I reworded it. thanks . [ more ]
Pouchomarx LOL, I guess that's what it sounded like.. Not how I meant it.. I am looking for someone that gets it thru their insurance , that can let me know who they use, so I can get it thru them.. My insurance is no help finding me a company other than local . [ more ]
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J-Pouch ForumsGeneral Discussion
Magnezij resonance
E Enterin
Enterin Thank you. Yes, they contacted a radiologist, he says that surgical staples do not create a problem. I'm filming for another reason, I have leg pain. Probably an inflamed nerve ... [ more ]
CTBarrister Are you having an MRI done specifically on the pouch (MRI Enterography) or on some other body part or area? I have had the MRI Enterography done and this was a non issue and has been a non issue in numerous other radiology studies including CT scans, PET scans, and abdominal ultrasounds. I don't think I have any staples In my J Pouch. I was told that they dissolved post surgically, and nothing has ever been visualized or indicated in any of these studies. So there could be different... [ more ]
Scott F The staples are generally made of titanium, and pose no MRI risk. You should let them know that the staples are there, though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipation just after constipation
N Neha
Neha Yes [ more ]
Former Member Are you drinking lots of fluids??? [ more ]
Former Member What are you eating? Like the previous responce, pain medications do cause constipation, and sometimes the bowel needs to "wake up". I was advised after fasting for an operation, and after having bowel surgery, to start off having liquids (soups and yogurt, which can get boring after a while!), see how you go, then build up to soft foods and go from there. I guess it helps with your body getting used to digesting things again. [ more ]
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J-Pouch ForumsGeneral Discussion
Does anyone have other auto immune diseases
N Nadine2012
Maggie4 I have Uveitis, however I only had one bad flare, and its been in remission for 6 years. I also have severe gum recession which my dentist says its from my IBD, UC. For years, if I had a flare that was just crazy, I would loose a tooth. Is a shame of course, but I never had a cavity and my mouth is always clean. I don't have plaque. Strange...but so is autoimmune everything!! Stress is our worst enemy. I feel for all of you. I just keep to an anti-inflammatory diet and that helps... [ more ]
Former Member Glad to hear that! Be careful about the sun though, wear lots of sunscreen because you definitely do not want to get skin cancer after everything we have been through lol. You probably do not need that much sun since you take supplements but who knows really. I personally do not worry about sunlight since I take high doses of calcium and vitamin D. For Vitamin D, sometimes I go up to 3600units in a day. [ more ]
CTBarrister I have taken calcium supplements for many years as well as a multivitamin that gives me everything I need, fish oil and zinc. As far as Vitamin D the best source of it is the Sun, 30 minutes a day. [ more ]
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J-Pouch ForumsGeneral Discussion
Multiple Stoma Sites
FM Former Member
Pouchomarx I also have 2 stoma sites on one side, and one was repaired with mesh from a small hernia I had after takedown. I wonder as well if I had to go back to a bag, could they use the same site? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pain deep in vagina
A Annabel
thumprhare I have deep left sided stabbing pain intermittently, it seems to be caused by pelvic floor dysfunction of the muscles. It is painful. Occasionally I swear it’s like a Charlie horse in there-squatting to release my pelvis seems to ease it sometimes. [ more ]
Former Member Do you think the pain might be related to healing? Some cases you can still expect some pain after surgery for upto a year, maybe longer due to scar tissue. Are you doing anything that could put a strain on where the pain is coming from? Have you spoken to a doctor about the pain? [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamins created Blockage
Lou PhillipsLou Phillips
Lou Phillips Thank you Strange. I do eat generally healthy, but well, ya know, not all the time. That said, something I know I need more than water, is reminders - hence why I value this feedback so much. I've found electrolytes in fruit, bananas mostly, but I should probably supplement with some PowerAde or Gatorade or organic apple juice? I'll do my best. Either way, much appreciated! Much, much appreciated. [ more ]
Former Member I agree with Scott regarding the dehydration but is it actually necessary to take vitamin supplements. Unless you’re not eating a heathy and balanced diet, there should be no reason why you can’t absorb nutrients; unless there’s an underlying condition. Due to dehydration, you’re more than likely low in electrolytes and/or potassium; potassium is normally absorbed from our diet but it’s kind of, also an electrolyte which can be replenished by increasing our sodium intake. The function of the... [ more ]
Lou Phillips Thank you Scott! You're absolutely right. I'll focus on my hydration. My struggle is, at home - I'm good. During travel, I'm not, because the more H2O I drink, the more unfamiliar toilets I must visit. So, I hardly drink enough, so it sends me into a multi day tail spin. Forget about mowing the lawn or going to the pool with my kids, that drains me within minutes. It's rough, but you're right, that's the core reason for most other issues, especially blockages. I greatly appreciate your... [ more ]
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J-Pouch ForumsGeneral Discussion
Hydration
R RyanM
Former Member ❤️
Former Member I like to eat a lot of salty/potassium stuff along with water, that helps me a lot. Juices that have potassium in it like orange juice for example. I try to drink 1-2 gallons of water a day along with salt and that helps me a lot [ more ]
drone3 I found out that Ionic liquid magnesium (I use ReMag) will quench my thirst when I'm very thirsty. I just put 10 drops in a glass of water and it works quickly. Hope this helps. [ more ]
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J-Pouch ForumsGeneral Discussion
Skin Issues
drone3drone3
CTBarrister Yes- skin rash is among the possible side effects of Humira: https://www.drugs.com/sfx/humira-side-effects.html Your doctor might try tinkering with the dosage of methotrexate first. This is what we did when my liver chemistries started reading abnormal. We adjusted the MTX dosage at first, and then I was taken off it completely, and the liver chemistries went right back to normal. Now I take Remicade straight up and am none the worse for it. If the methotrexate isn't the culprit, it's also... [ more ]
Scott F Both Humira and methotrexate can sometimes cause significant skin reactions. It might be worth calling your doctor to discuss what’s going on. My rheumatologist claimed that there isn’t much overlap between the biologics for IBD and those for inflammatory arthritis, but I’m not sure that he was correct. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Calmoseptine for butt burn
M Mary2020
Mary2020 Hi Everyone Thank you for your suggestions, I will try a bidet and some germoline as Calmoseptine appears similiar to this. The Calmoseptine is the only ointment which helps and I've been through a few over the last 2 years. I've also tried the ILEX paste but really didn't like it and it not's for me. Thanks again for all the input and especially to YTCROCKPOT who is helping me out with this [ more ]
Former Member Have you tried ilex paste; that’s available within the UK https://www.ilexhealthproducts...-protectant-57g-tube If you’re registered with a UK GP, it’s available on a NHS prescription. [ more ]
James B I know all of our pouches are different, but just wanted to pass along that a bidet is what ultimately solved my butt burn. I use flushable baby wipes when away from home, and the bidet at home. If I use toilet paper, I get really scuffed up. And the bidet seems to sooth the area in addition to avoiding toilet paper. But again, our journeys are all different. You may already be using a bidet. I have a cheap squirt bottle bidet for travel also. The Calmospeptine was a lifesaver in the... [ more ]
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J-Pouch ForumsGeneral Discussion
How long should a J-pouch last?
J justtj49
Former Member There is the risk of dementia or Alzheimer’s with old age. I do not think I can live very long with a pouch, but if I do and if I get demented, I would rather be incontinent that have to deal with a bag. [ more ]
Dave @ Wa Well I believe I am at 23 years and 60 years old. My pouch has been stable 90 percent of the time. The older I get the less challenges I have it seems.. [ more ]
GKU_51 Spell check changed my word. Should read ostomy [ more ]
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J-Pouch ForumsGeneral Discussion
remicade
SH shawne h
Dave @ Wa Biologics are interesting , remicade did not work for me, sometimes you have to try several before you find one that works for you. I am on Stelara now every 6 weeks I inject myself at home.. Nice convenience... Good luck [ more ]
Jan Dollar The granuloma in the biopsy is pretty much confirmation of the Crohn's diagnosis. They usually don't see it, so it is helpful that it was there. It does not have to be at that particular site for all your small bowel inflammation to be Crohn's. The steroid injection would probably be a good option, since that would be very site specific and hopefully get quick results. But, bottom line, you eventually would need maintenance therapy. If it were me, I'd prefer Humira over Remicade for a couple... [ more ]
shawne h Jan you are correct in your statement it is believed that the swelling from the inflamation is causing the stricture i am not so sure as it has not been proven that the biopsy showing a granuloma was taken from the inlet to the pouch i am going to ask for another scope and biopsy be done of that area as well can they inject a steriod directly into the area at the same time this procedure was mentioned in a article by Dr. Shen that you had posted a link for in one of your posting i printed it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
possible adhesions
LB Lou Bell
jipalmer Hi Lou, I’m so sorry you’re having such a rough time! My symptoms were very similar...trying to go to the bathroom but nothing would come out. I also had abdominal pain, nausea, and eventually vomiting. My episodes would come on rather quickly and I would immediately go to the emergency room, figuring I had a blockage of some sort. This happened about twice a year for 6 years before they were finally able to confirm the blockage on a scan. I guess the previous ones sorted themselves out... [ more ]
Lou Bell Thankyou Jill for getting back to me, what were your symptoms please if you don’t mind me asking? I feel at the moment that i wouldn’t even mind surgery it’s that bad especially when i have the pain from gas which just won’t come out! It’s so hard as ive two little girls under 4 years old and they keep asking me why i’m laying down on the bathroom floor. i don’t have time to spend 2 minutes on the loo never mind the 15 mins several times a day which i’m doing now. i’ve lost 7 lb this week... [ more ]
jipalmer Hi Lou! i had the same thing happen to me off and on for years. Unfortunately, I ended up with a closed loop obstruction and did end up needing surgery to remove (what the surgeon called) a “web” of adhesions. This was about five years ago and I’ve not had an episode since. I’m glad you’ve been able to manage most of your episodes at home; I always ended up having to go to the emergency room. Let us know what your doctor says! Jill [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gall bladder surgery
J JJA
skn69 I had mine out after years (over 30) of putting it off and suffering uselessly. My general surgeon did it through Lap and found a meg-gallbladder ready to burst...drained a quart of black bile before he could remove the stone and pull the darned thing out. He also took advantage of the visit inside to lyse some adhesions and unstick a loop of bowel (a triple header!). A bit longer recovery than usual (I need 3 nights in and a week at home) but I regretted waiting so long to do it. Some of us... [ more ]
Bubba1028 Sounds like it was challenging but glad you got it taken care of before it was an emergency or caused you more issues. Now that it’s behind you, one less thing to worry about! Stay healthy!! [ more ]
JJA Well, after procrastinating on the gall bladder for at least a year and a half, with continued attacks, and my routine scope a year late, I finally got my pouch scoped and saw my GI down at Rochester Mayo. I mentioned my gall bladder issue aamd how Is been procrastinating scheduling with a surgeon and he referred me to an experienced surgeon down there who mostly operates on people with “weird anatomy”. Had it out in June-it was A lot tougher and longer than they were expecting, due to... [ more ]
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J-Pouch ForumsGeneral Discussion
Dealing with alcohol and fizzy drinks
UKPoucherUKPoucher
Brad1 I’ve had my j-pouch since 2016, and through quite a bit of experimentation I’ve settled on the below routine. I slowly built up a tolerance for taking psyllium husk fiber capsules to help my GI regulate water motility in/out, and I take psyllium husk capsules every night to keep up the tolerance. I also take activated charcoal capsules at night to control gas. When I know I’ll be drinking (wine for me is better than beer as beer has too much liquid), I preemptively take one activated... [ more ]
gleam Carbonated drinks make for a rough night and next day for me. It’s a lot of gas and since I can’t pass gas without a BM unless I am laying on my stomach or sometimes right side, it’s not a fun time. [ more ]
UKPoucher Thank you for your replies everyone. Lots to useful information for a new J Poucher like me. [ more ]
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J-Pouch ForumsGeneral Discussion
Dealing with caffeine (Coffee and caffeine pills)
UKPoucherUKPoucher
CTBarrister UKPoucher, In terms of caffeine tablets, when I was in law school, there was a product called "NoDoz" that my classmates and I took, as well as coffee. That was 30 years ago in my pre J Pouch days, but it's still on the market and available on Amazon: https://www.amazon.com/NoDoz-M...qeJYepgaAg0XEALw_wcB My caffeine consumption was at an all time high in law school, but since I got my J Pouch I still drink coffee and have not observed any appreciable difference in the effect of caffeine on... [ more ]
UKPoucher Thanks for your reply. I do plan to experiment with caffeine but as work and life in general is beginning to return to normal, I have been quite busy. So I am just looking for anecdotal evidence from other J Pouchers to have a good idea on what to expect. There are a few threads discussing coffee but I haven't found any on caffeine pills. So anyone's experience with them will help. [ more ]
Scott F For this purpose the experiences of others may not be your best guide. It’s easy to experiment with how your body reacts to coffee or caffeine: the effects are quick, reasonably unambiguous, and relatively brief. See what works for you. I had to avoid coffee for many years because of IBD the effect on my gut was very unpleasant. After my J-pouch surgery I was able to enjoy coffee, and I’ve been doing so for about 18 years now. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
vitamins and essential oils from doterra
K kk
kk Thanks Scott. Well no doctor has given me an answer about it. Never told stricture. Think for some reason at times stool is pushed to that corner to come out and then doesn't open well causing irritation. Best I can figure out. Unfortunately when it happens I have much pain there whether or not stool is coming out. [ more ]
PouchMan007 I would be hesitant to use essential oils topically or to invest them. There is a lot of misinformation out there on essential oils, and can be dangerous. The only thing I would use them for is scent diffusing, and any other use I would check with my doctor. Plus Doterra is an MLM and I don't support those types of companies. [ more ]
Scott F Kk, when you write “upper right corner of cuff” I get concerned that you may be misunderstanding what and where the cuff is. Perhaps I’ve misunderstood, but just in case: The rectal cuff is an internal structure, generally at about a full finger length inside the anal opening. If you are having pain at/around the anal opening that’s more likely to be an anal fissure than pain from cuffitis. You can have both, of course, but they call for different treatments. [ more ]
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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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