LORI726That makes a lot of sense. I might have stayed there for a year if I had that many bowel obstructions! So painful. Glad things are improved now! That is no way to live. [ more ]
duck11No major complications, but I did have an endless ileus, my guts took almost 4 weeks to wake up, but I think my surgeon, whom is nothing short of a hero to me, kept me in to save my mental health given where I came from going into that surgery. I had over 45 bowel obstructions in 2-3 years and so so so many ER visits and hospitalizations, dismissals and even hostility from other health professionals who weren't skilled or knowledgeable enough to diagnose my rare problem, accusations of being... [ more ]
SJAN810ANDRINA, Sorry to hear you are having trouble too! Are you in the hospital for the blockage? What has your doctor recommended that you to do to treat it & avoid it in the future? I was on biologics for ulcerative colitis before my jpouch surgeries but now every test that's been done has come back normal...no obstruction, no inflammation, etc., so there hasn't really been a reason to try them again. I do take probiotics. It's hard to know whether they're doing anything for me or not. Have... [ more ]
AndreitaI had my reversal done in May 19 and I'm currently suffering from inflammation and an acute blockage. I'm not sure what I will do next but I hope you find a solution soon. Have you been on biologicals and probiotics? Sorry if I missed it if you mentioned it already. [ more ]
SJAN810It’s been almost 2 years since I started this thread and I’m pretty much in the same place I was when I started. On 2/26 I had a rough night…severe abdominal pain, a panic attack which caused me to pass out and end up on the floor twice. Last night (3/7) I had severe abdominal pain again. I’ve had the same lower right side pain for almost 2 years. Usually it is mild to moderate but every few months it becomes severe, 10/10 level pain, which only gets better after a BM (I often have to use... [ more ]
MChiI buy my vsl online at https://shop.vsl3.com/vsl3-c2.aspx, with a $5 off coupon when using the promo code "DOCTOR". But, if that isn't affordable, then I have also used Inner-eco liquid probiotic. I buy it from whole foods or natural grocers stores for about $25 per bottle for 30 servings. [ more ]
Scott FSoluble fiber (like Metamucil) helps many J-pouchers by thickening the stool. Stool that’s less liquid is less likely to leak, and can be easier to hold in. The fiber develops a gel-like consistency when mixed with water. It tends to thicken watery stool to that gel-like consistency, and also thins hard stool to that same gel-like consistency. [ more ]
Phil1010You're correct, Scott, about coffee. Though a diuretic it still has water, as one med journal noted. Get this. In my third hospitalization a physician told me to drink no water at all. I was there, he said, because I had flushed all my sodium out with H2O. He advised any liquid but that: tea, soda, coffee, whatever, just no water. I rather swiftly ignored that, I do drink water and I still dehydrate but not nearly to a hospitalization point. Only the salt tablets have retained the water I do... [ more ]
Scott FCoffee is *not* “very dehydrating.” It is considerably less hydrating than water and most other beverages because of its diuretic effect, so it’s far from an ideal rehydrating solution, but it’s best not to spread myths about it. Some folks get dehydrated from drinking too little, some get dehydrated from losing too much (from frequency and/or poor water absorption), and some have a combination of these. It’s best to work out what’s causing a hydration problem before proposing a specific... [ more ]
Mary2017Since you have dehydration issues. I would develop a plan on "How to drink more water". First: Coffee is very dehydrating because it is a diuretic. I would give up coffee but if you cannot give up coffee, I would drink a cup of water behind every cup of coffee to replace what you lost. I always put salt in my water to help me retain the liquid much longer. Maybe that can be something you can try? Drinking water: before during and after every meal will help as well. Drinking water behind... [ more ]
linaAhahahahaha! Thanks Sharon! LOL. Minty fresh! [ more ]
skn69Not to belittle your concern but...things should come out smelling nice and minty Sharon [ more ]
linaThanks everyone! I just had a very warm chicken noodle soup and some warm tea. I feel less nervous! Thanks! Hopefully it's dissolved by now! [ more ]
Mary2017I honestly think that gas is going to be a part of our lives. The colon absorbs gas so since the colon is gone- were always going to have extra gas unfortunately. I think its just a matter of accepting. What helps my gas is Maalox, its treats painful gas too! https://www.webmd.com/drugs/2/...alox-ms-oral/details [ more ]
scallopOf the foods you mentioned I only eat broccoli and occasionally teeny amounts of cauliflower but I might as well give beano a try. Thanks! [ more ]
Scott FNot all fiber is created equal. When I eat broccoli, cauliflower, cabbage, Brussels Sprouts, etc. I *always* take Beano to reduce the gas. Gas can fill up a pouch pretty easily, and then there’s no room for poop. [ more ]
Sara MarieI have leakage at night occasionally-like a few times a year. It is usually accompanied by a bloated belly for a couple days beforehand. I take a bunch of probiotics the next couple days and it seems to go away. Sometimes I'll take a short course of oregano oil as well if there is also fatigue paired with it. It is usually a small amount of clear liquid that is smelly and it wakes me up because of the sudden warm feeling, but it doesn't feel like I'm pooping. It feels like nothing. [ more ]
AngiebThank you I was thinking maybe it’s a little different this time as well [ more ]
Mary2017I would definitely recommend to call the gastro's office and make an appointment to get checked out by a professional. Have you had pouchitis before? [ more ]
KelleydgYeah, at the doses of husk that I'm taking, I prefer not to add all that extra sugar to my diet. I have also read that stevia is better for your health than the aspartame. Costs more though. But it's natural. Although we are pooping without colons: so "natural" is just so overrated for us. Lol! [ more ]
roadshowFor me sugar increases frequency more than almost anything, except maltitiol which I avoid. I've never had any problems with Stevia or Splenda. I'm also on a low carb diet and sugar is a big no no. [ more ]
SeattleJaneHi, Has your doc ordered a simple CT scan of abdomen/pelvis with IV contrast yet? Maybe that was part of the hernia work up - I know nothing about what's involved with that. The value of the CT scan with IV contrast is it shows if you have a partial blockage. You could call your doc on Monday and ask they put in an order for that diagnostic. Or, if you want clarity sooner, a trip to the ER might be in order. The ER admitting folks just need to know you have a j-pouch and are afraid you might... [ more ]
MysticobraSorry. That sounds serious. E. R. trip? I know when one is coming even if it's partial. But I have an ileo. I ate some leftovers yesterday. And everything I ate has a tendency alone to cause one. So I only had tiny portions of each. Chewed well. Drank a lot of water. It started anyway. But I got lucky. Been 16-17 hours since I ate. 4-6 after I knew. Couldn't find mirilax. I use a tad. Not a cap full. Works just as good. So I put a heating pad on high on the bulge for five hours. Having an... [ more ]
BrellisIm afraid that this never will solve by itself and my mind starts to think catasthrofic thoughts and just feel so sad… the buldge is still as much as it has been for a whole week now. The left side of my stomach is soft and the right side with the buldge is much more tense and swollen.. [ more ]
NancitaI have a J pouch after having colorectal cancer 10 years ago- 2014.I wanted to share my Metamucil journey in the hopes of Helping anyone else searching on our website for tips and tricks. I became desperate to find a solution for the frequency of stools and how loose they were as no matter how I adjusted my diet or used anti-diarrhea medicine, The frequency and unpredictability of my bowel movements was severely limiting my ability to basically live, leave the house, go on trips Etc. I work... [ more ]
BobishCheers both, I use the 'my protein' version because it's cheap and the company is well known for simple honest quality supplements (amongst the UK body building community at least). So far I've had mixed results with a teaspoon twice a day (4 times my usual dosage). First day was great, second day uncomfortable with regular toilet breaks. Maybe it will settle down, I've been meaning to pay with dosage level for a while. Will let you know the outcome. Also I'm tempted to try benefiber at some... [ more ]
naplisIn case you want to try the exact psyllium product I referred to in my post, it is "Yerba Prima Psyllium Whole Husks Colon Cleanser". It is marketed for heart health. The ingredients list: "Psyllium seed husks". That's all. I started with 1 Tbsp and worked up to 2 Tbsps over a year. Best of luck! [ more ]
Sara MarieIn my experience, psyllium works right away, not over time. If you're not seeing any difference, you may need to take a larger amount. I take a heaping teaspoon with water before my breakfast (oats) and that is sufficient, however, before meals that move quickly through (veggies, meat, etc.), I need 2 t with water before eating. You may need even more because of the missing gallbladder? And I might require less because I'm kinda on the small side (5'2", 110lb). [ more ]
Nancita👏🏽 What a wealth of info here! Thanks all! I’ve had my j pouch for a few years after surviving colorectal cancer, then lost my gallbladder. Loose stools are bad enough but that combined with increased butt burn from all that bIke releasing w/o the gallbladder is very uncomfortable . Thanks to this topic ( and my gastro doc) I started taking Metamucil fiber a few days ago and hope it will help mitigate all the bile acids and slow down my active j pouch. So far I don’t notice much... [ more ]
Former MemberThat is really ironic! What made you not wear it in the ATV? Any particular reason??? [ more ]
rripThis is what troubles me so much... I have never for the 40 years I've had a driver's license driven without a seat belt, & never ever even ride as a passenger without a seat belt. Even as a kid I used the seat belt without being told. The one time I go without it was in an ATV? I can't understand my thought process on that one. I really am lucky. [ more ]
Jan DollarBy the way, you can buy bottles of loperamide OTC on Amazon, but I am not sure I would trust them. They are sourced from China and it is not clear what is in them. Jan [ more ]
Jan DollarNo, I just reduced my dosage gradually over the nearly 30 years with a j-pouch. I take a “holiday” from it from time to time to see if it really makes a difference for me. Turns out I still need it. Jan [ more ]
Mema 1Thanks, Jan, I'll get some and try it very soon. Do you only take 4 because of the Remicade? [ more ]
IbdmomThanks to all for your input. It definitely was a great relief to hear! I think the bleeding comes from her possibly straining. I think doctor would have seen if she had a hemorrhoid, but it is possible that it hides. It is definitely not huge amounts comparatively to when she was sick with UC. Curious to see if she begins to feel better in these coming weeks knowing that she checked out ok. [ more ]
Doug KThe IPS could cause the belly pain, but I agree - blood in stool is not a symptom of either IPS or Pelvic Floor - - a hemorrhoid that hides and comes arounds every so often sound like a possibility. They generally don’t bleed a ton, but enough to notice. [ more ]
New577Hi, Glad to hear none of the usual suspects were found. I agree with Scott in that IPS nor pelvic floor dysfunction should cause bleeding. I also suffer from IPS (not surprising since I was a lifelong IBS sufferer). Perhaps you can have your daughter make a note or inform you when there is blood and where found (stool, toilet paper ) and keep track to see a pattern and determine if these are transient events. I know researching and keeping up with pouch conditions is not ideal, however... [ more ]
Former MemberI would rather you get the biopsy ASAP but I am glad you are looking further into this instead of just dropping it like other people said to. Thank-you for looking further into it And okay let us know, I hope all is well! [ more ]
Nick10136Hello All: This is Nick who began this discussion about enlarged prostate and a high (9.3) PSA test. A urologist from Johns Hopkins Hospital told me before anything else happens I should get a 4K blood test which determines whether or not to have a biopsy of one's prostate. I will let you all know what happens. Thanks to all for your comments and recommendations. [ more ]
Former MemberYeah, the J-pouch definitely affects a lot of things, I am not too surprised about that at all. [ more ]
Scott FWe all have worries of various sorts, but pouch cancers are extremely rare. Crossing the street is probably a greater risk. Cipro helps me a lot, too, so I’ve chosen to take it since 2008. [ more ]
Maverick PlusSeattle Jane, do a search on this website. There must be a few discussions on pouch prolapse. [ more ]
SeattleJane@Jan Dollar Thanks for the head's up about the threads on this site that will explain j pouch prolapse. I will look them up and read them. I am able to do an internet search on anal manometry and find good descriptions, but zero on j-pouch or pouch prolapse. To answer your question, I don't think anything was ruled out as far as previous adhesions are concerned, (but maybe?) and I also don't know if she looked as far up as the spot above the pouch. All she said to me when I groggily woke up... [ more ]
Jan DollarThere have been a number of threads here that discuss pouch prolapse, fewer about anal manometry. I am not sure how your GI office handles patient communications, but you can certainly ask for these diagnostic procedures without getting an office appointment with your GI first. I am used to email communication through a patient portal and phone/video appointments. The defography would be scheduled with the radiology department. Your GI may need to refer out for the manometry, such as a... [ more ]
LjzYIke’s! Had not heard that BCIR not being done anymore nor did I hear that regarding K pouch. I think Dr Dietz is last I heard doing k pouch. Really makes me hope J pouch redo goes well if in fact this is the case. [ more ]
PouchomarxJust be aware the BCIR isnt really performed any longer. Even the kpouch is hard to find a surgeon these days. [ more ]
crohn's j-poucherOops my message above was for LIZ11....How are you doing with these issues? I'm sorry you had to go through this, but it's the first time I've encountered someone going through EXACTLY the same thing as me!! Can we chat more about it? Looks like you haven't posted on it in awhile and I want to see how you're doing. Thanks! [ more ]
crohn's j-poucherLIZZ how are you doing with these issues? I'm sorry you had to go through this, but it's the first time I've encountered someone going through EXACTLY the same thing as me!! Can we chat more about it? Looks like you haven't posted on it in awhile and I want to see how you're doing. Thanks! [ more ]
RLCHang in there Liz! Although, it's easier said then done! I am still hoping for the best with this j pouch working and all the other issues that go along with having it! Roberta [ more ]
Deb CHave you tried an enema then using a catheter to see if you can get more complete emptying? [ more ]
Doug KHi - sorry you are suffering so badly. So the problem seems to be that you are having trouble emptying the pouch fully, and getting backed up and it’s causing acid reflux and an overall feeling of illness. That sounds hellish. The doctors don’t really know exactly what is causing your inability to empty, but that inability to empty is what is causing your reflux (potentially). The doctors are recommending to give you an end ileostomy to get you feeling better, but they don’t have a pinpoint... [ more ]
Jan DollarThis is a tough one. Sure, there are other options, like a pouch redo. Not many surgeons have experience with it. Plus, with a Crohn’s diagnosis, you cannot really risk losing even more small intestine if the second pouch fails. With Crohn’s, preserving your small intestine is a priority, because you are at a higher risk for future bowel resections. You’ve been on lots of different meds, so I don’t know what you have not tried. Still, I do not blame you for wanting to be sure that permanent... [ more ]
Caroline's dadOur doctors recommending removing the rectum as well. From what I remember from our numerous discussions was that the existing rectum could develop UC as well. Believe me, my wife and i wanted to preserve every bit of her as we could but ultimately we had faith in our surgeon and GI Dr and we took their advice. In the end we're glad we did, although I'm told Chrone's can develop in UC patience, it is very rare, so removing her colon and the rectum, even as barbaric as that sounds, has given... [ more ]
CureJLBHi, Kim A. I'm glad our experience is helping others. Where is your son having the surgery? We are getting close to making a decision ourselves. Good luck with the surgery this week and please let us know how it goes! [ more ]
StormwatchI still have an accident at night now and then but no leakage. I am still on both antibiotics. I'll probably be taking them until a better solution comes along. [ more ]
StormwatchListen. I got diagnosed with irratractible pouchitits in 2000. Tried every antibiotic. Every single clinic I went to. Remicade, entyvio, everything I tried. I had a fistula so huge between my Anus and Scrotum that when I got it lanced, the surgeon was legitimately concerned. I was getting abscesses lanced twice a month. As of today I have been 90 percent better for 1 yr. Firstly and most importantly, my intestines were not absorbing the antibiotics. I randomly started chewing them into... [ more ]
Jan DollarCall your GI. At least in the US they will often prescribe a course of metronidazole or ciprofloxin based on described symptoms alone. No need for an urgent appointment and poking around in painful places (yet). Another thing to think about is the possibility of an anal fissure, as your new rectal pain sounds a lot like one. It is often associated with straining at liquid or formed stool. Hermorrhoid cream can help while you get this sorted. And, no, probiotics will not treat what you have... [ more ]
Former MemberYour welcome. I personally think you have pouchitis but the only way to know for sure is to see your gastro and get scoped. I would reach out to gastro and book an appointment. Sometimes calling daily can get you seen sooner in my experience. People can cancel randomly, so i usually grab the cancellations. [ more ]
VB_93So I’m beginning to think what I have is indeed pouchitis. The only contrary things that lead me to think otherwise is that my stools have formed up and I’m not seeing any blood. However, the tailbone pain, urgency and nighttime frequency are all pointing to pouchitis. Please let me know what your thoughts are on this. [ more ]
Jan DollarHow about asking about having a serum drug level done? Then it will be clear if enough is absorbed. Jan [ more ]
Scott FHopefully you’re taking it with food, at the same meal each day - that’s important. If it’s working you should experience the benefit within 28 days or so, with some effect starting at about 14 days. The peak blood levels are achieved at around 8-10 hours after a dose, so clearly it’s staying in your system long enough, though I’m not sure if the intact pill is worrisome or not. [ more ]
BobodjYes, I did that and the pill (on two occasions) is basically in tact. [ more ]
lindaslankardI know exactly what you’re talking about. It is a terrible way to live. I’ve tried every cream, ointment, etc I’ve gone to Cleveland Clinic, Vanderbilt—you name it—I’ve tried it. I wish someone would find an answer because you have no quality of life. It’s a tear in the wall if the rectum, fissure or fistula. Help us please!!! [ more ]
Momof2I’ve had 2 setons in for 8 months. I’m in constant pain especially after using the bathroom. The pain escalates more and more after each bm. The pain is like someone put a hot poker in my ass. Any thoughts would be SO appreciated. [ more ]
Nikino@SeattleJane and @Sara Marie thank you both so much for your reply. I really appreciate your feedback and will look into all these things. Hope you have a great rest of your week. [ more ]
Sara MarieThere is a product called "Immy" that is supposed to help with the immune system. I haven't fallen prey to any virus since I started taking it in the spring. My husband had COVID and we didn't isolate and I didn't get it. Maybe it wasn't the supplement, but maybe it was? [ more ]
SeattleJaneFor what it's worth, I wear a fresh, clean KN95 mask everywhere outside of my home, even outdoor places like garden nurseries, walks in parks, Farmer's Markets, etc. Sometimes I double mask in medical facilities or rooms packed with people, on the bus and airplanes. I haven't had Covid, the flu or even a cold since Feburary of 2020. I have had all the typical vaccinations and every Covid new vax and booster for people 65 or older. I can hear the Beatles saying "Number 9, Number 9" in my head... [ more ]
Ed55I am 70 too and, like your father, had J pouch surgery many decades ago. I have had several surgeries for kidney stones and after each surgery I suffered an ileus. The doctors told me to increase my hydration but trying to increase hydration without a colon is very hard to do. I chose to have IV saline infusions rather than drinking water that went right through me. Infusions can be combined with blood work to balance electolytes, add minerals, etc. to the saline. As for the gas, I laid on... [ more ]
Anv95Thanks you all for the advice, its been helpful! I've been really stressed seeing him like this. He has been walking a bit more, he isn't able to drink fluids due to having an NG tube. He passed some fluid but not quite a full BM yet. So thats a step in the right direction. [ more ]
Jan DollarSome people swear by chewing gum to get the gut stimulated after surgery. There is some science to it, but study data has been conflicting. The good news is that eventually everyone’s gut wakes up. The bad news is that there is a very wide range of that time table. Jan [ more ]
Jan DollarThanks for coming back and filling us in on how things worked out. Glad you are OK. Trips to the ER are always such a pain, but in the long run it is so much better than sitting at home wringing your hands. Jan [ more ]
Scott FI’m sorry you went through an ER visit, but I’m glad you’re well. A small amount of blood can look like an astonishing amount in the toilet. [ more ]
SpencerSince alot of the threads around bleeding and dilation don't really have a conclusion I thought I'd share what happened after my last post. I had several more very bloody episodes. One at 5am seemed like the worst, so my assumption was that things were progressing badly. I made the decision to go to the ER. I had not eaten since 10am the previous day, drinking only water. I sat in the ER hungry but feeling safe. My vitals were take by the triage nurse and they were all normal. They got me a... [ more ]
skn69I had emergency gallbladder surgery about 8yrs ago...not because I hadn't had signs but because no one wanted to touch it and especially during other surgeries due to cross-contamination. Nothing showed on the scans but during laparoscopic surgery, they discovered 1 huge stone and about a quart of black pus...it took hours to get rid of it. After the first week of discomfort due to the obvious distress my body was in, things settled down. I eat normally and have normal pouch function (k... [ more ]
Scott F@Nikki Nicole — If the MMT is slowing things down too much, it might be worth trying psyllium to normalize the stool consistency. Make sure to drink plenty of water throughout the day. If you can’t get that to work then a *modest* dose of MiraLax might help. [ more ]
Nikki NicoleIf I have a jpouch already & now no gallbladder what can I take to be more stable with having bowel movements with me being on MMT Methadone Maintenance Treatment for pain . What can I take for this please someone help something that will keep my bowels moving easy & consistently. Also anything I can take so I can digest fats bc they constipate me but I’m trying to gain weight back too . Please help 🙏🏼😔😞 [ more ]
Former MemberThat is pretty smart!!! I am so happy all of this worked out for you! Please let us know how it goes! Your own bathroom sounds lovely!!! [ more ]
Anna625No, it's in January but I know that my boss has to book the Airbnb soon so I wanted to reach out early [ more ]
LjzGood luck! Hope the treatment has helped your soreness and pressure and that going forward your j pouch works wonderfully! It does take time so I will you patience as you heal! [ more ]
LyssicoleThank you everyone for your help. My colorectal surgeon took a look down there and discovered multiple fissures (and hemorrhoids). I am now waiting for a procedure to help them heal, cauterization and Botox for the muscle. No wonder I had pain other than the burning and itching! Not sure how this happened as I don’t strain a ton. Must be just from the trauma in general and excessive BMs. [ more ]
Sam79Hey lyssicole I had the same diet right after reversal. It takes time for your system to adjust. I went 2 weeks on liquids then 2 two weeks on solid liquids before I could have real food. Has your Dr told you to take imodium to help slow things down? That will help alot right now. Things will get better, your doing what you can for the burn just give it time. [ more ]
AMBProlapse? Mine is not evident unless the endoscopist is using air to replicate passing stool, which reveals the prolapse that is interfering with emptying. It also makes me prone to bacterial overgrowth I believe. So, antibiotics for that. Symptoms similar to what you describe otherwise. The prolapse recurs and must be treated periodically. [ more ]
helenaI have this. I’ve had the pouch 1 and a half years and it’s never been good for me. I plan to have it removed and go back to the stoma. The pouch isn’t for me [ more ]
SeattleJane@shoflo Hi - this thread is over 5 years old, so I don't know if you are still on the site, but hopefully you still receive forum notifications. May I ask if you had the manometry test, and also ask if your problem with constipation resolved and if so, how? I have been struggling with constipation for months and just today received a message that my G/I doc will be referring me for a manometry test. I hope you are doing well! [ more ]
RajI got once constipated post takedown when I consulted my surgeon to add imodium daily to restrict bms. For the first day it was good but the next day I was badly constipated. Nothing moved out and the pain was killing. I pushed so hard that a little blood came along with a little stool. What I found from that incident is I cant take more than 1 imodium a day. I have to drink plenty of fluids regularly even if it means having a little loose output. Also if I ever feel like being constipated I... [ more ]
Nish123Thanks Jan Dollar . i will call my doctor tomorrow and see what they say . The problem is that i had my IBD specialist and surgeon in new york .i moved to texas shortly after take down and starting again with a new doctor has been a problem [ more ]
Jan DollarNISH123, you may have both cuffitis and pouchitis now. In that case, antibiotics would be appropriate. Also true if you have bacterial overgrowth. If it has been a long time since you saw your doc, a new exam is in order. Otherwise, a phone call may get you a script for an antibiotic. If it is ineffective, then you may have more to discuss at a face-to-face appointment. My GI doc is super busy, so he is very responsive to emails and calls. Jan [ more ]
TannerSorry about surgery! But I have had jpouch 34 years. Have had 80 blockages. In hospital 50 times. Anyway I was in for 3 days once and no surgery was done. 2-3 days about 5 times. Finagren and Morphine plus lots of fluids and I go upside down on a couch along with massage helps get rid of it. Good luck. I had scar tissue taken out 15 years ago. Now getting bad again! [ more ]
TannerRe: Son with J-Pouch needs surgery tomorrow for blockage from scar tissue? [ more ]
Morgan HubbardHi! I LOVE my GI doc in Boston; her name is Dr. Vanessa Mitsialis. I also have had really good experiences so far with my surgeon, Dr. Joel Goldberg. Both are at Brigham and Women's in Boston. I recommend a visit with Dr. Goldberg, for sure. [ more ]
PT1092Hi Katie, Dr. Liliana G Bordeianou At MGH is amazing. If your insurance is accepted I would contact her and go for a consult. Best of luck! [ more ]
Katie SThank you so very much. Doing my best to take deep breaths. [ more ]
atimkoI use Metamucil. One thing i do is to take the Metamucil with only a half glass of water, which seems to make the stools thicker. I usually take it in the morning, but sometimes take it again at supper. You don't want to take too much though, because it can give you gas pains. It is mainly trial and error. [ more ]
readannI agree with you, @Kmiller , the frequency needs to go down. I will try the cholestryamine, soon and maybe even Immodium. I just dont want to get backed up. [ more ]
Kmiller@readann nothing so far thats a no, but I haven't tried too many veggies yet. Working to expand that. I really want a salad but trying to decide which day to ruin if that doesn't go well 😀. So this morning, went many times just a little. Hadn't eaten yet, so ate a chicken lunch meat sandwich and then was able to fully empty. I think sometimes the discomfort is gas causing pressure too. I've been fortunate with food that I don't get butt burn very often. I stick to water, coffee once a day. [ more ]
MaxxHello SWG - I did a few things and it kind of solved the problem. I took antibiotics (Ciprofloxacin 550 twice a day) for about 10 days. (earlier I was doing shorter course). I stopped drinking tap water, I use a purifier at home & bottled water when outside. I try to eat freshly cooked food and stopped eating leftovers most of the time. After doing all of this, my diarrhea episodes have been reduced greatly. My doc thinks it all happens due to bacterial infection and because of low... [ more ]
SWGHi Maxx - My son is experiencing similar symptoms to the ones you described in this post. Have you discovered a way to address them or has it resolved? [ more ]
MaxxScott - I have tried Metamucil that worked okay to temporarily relieve symptoms. I am having issue in only those 4-5 days when I have too watery stool and a sick feeling, bloating etc. After that episode is over, the stool becomes consistent enough. Even get constipated sometimes. [ more ]
Jan DollarDitto on the above in regard to acute vs chronic kidney disease. I am also one with chronic mild kidney disease. Yeah, I trend toward dehydration, mostly out of laziness. Plus, I also have type 2 diabetes. My primary has put me on low dose losartin (an angiotensin II receptor blocker) and Jardiance (SGLT2 inhibitor) to help protect kidney function and prevent further damage. My renal function has improved somewhat . I try to actively keep my fluids up, but I am still lazy. Jan [ more ]
SpookyHello! Good to see some familiar faces! I don't mean to be a stranger, I should pop in more often! I'm mostly doing well, with the occasional health hiccups that I've come to expect after almost 20 years without a colon. How are you doing? Thanks so much for the info. I thought it was odd that the eGFR would fluctuate nearly 20 pts either way (I couldn't find much online about rates varying at all, other than to say they decline with age) , but hydration could certainly explain it. I... [ more ]
Former MemberYeah our periods can definitely be hard lol, NSAIDS are the only thing that works for me unfortunately. Yeah, I learned about the NSAID thing from watching J-pouch videos on YOUTUBE from Doctors and reading research online. Too bad we have to do all this research instead of our doctors telling us. If you are going to continue taking NSAIDS too then try taking it with a meal to lower risks. Sounds great about the Yogurt!!! I have been doing that for years! No problems Your welcome for everything [ more ]
sofiOh wow, I know how that feels tho, I suffer from headaches and cramps with my period and NSAIDS are sometimes the only choice, I didn't know it could be so bad for the pouch, drs always say try not to take NSAIDs but don't specify why. Thanks for the input and will definitely add the yogurt to my daily diet! [ more ]
Former MemberYou are welcome my dear! And yeah definitely! NSAIDS can cause pouchitis unfortunately and it can irritate the pouch. Many doctors recommend we do not take it as a J-poucher. I take it anyway (OOPS LOL) NSAIDS are the only thing that works for my period cramps unfortunately. I know I need to look at other options though. In the past when I took NSAIDS, it made my pouch bleed a lot too. I take NSAIDS with a meal now or with food and I have not seen any blood since I have been doing that. I... [ more ]
tfDon't give up. It's a forever tweaking of the diet. Food & vitamins especially pro & prebiotics are so important. Exercise especially stretching & relaxation ones. No high impact. [ more ]
Former MemberYou are welcome! Keep posting!! Your posts help me [ more ]
skn69I was about to say the same thing as Winterberry...what is your diet? What do you eat and when? What do you eat it with?? At what times? Are you more sedentary now with the confinement and Covid? Have you changed anything in your routines??? What you drink? Your meds???? Maybe we can help you to find a method that works for you and helps. Sharon [ more ]
PouchbroKombucha will leave you even more bloated due to the carbonation and most are basically packed with sugar especialy since sugar is used during its brewing/fermentation. [ more ]
AimcI swear that area was numb for days for me. I guess that's okay because it didn't hurt. [ more ]
MreynaYes I did l My first one in Minnesota was not bad. The doctor in san antonio and then my home town was extremely painful after I woke up. I just dont think these drs had done them enough😕 [ more ]
LovelyCarrotThe more food you eat, the more active your intestine is and the more stuff “packs up” against that obstruction. When I have one (often) I eat as little as possible and sip water and sport drinks just to stay hydrated. Sometimes I’ll have a little jello or milk. Put another way- when I go to the hospitals for obstructions they stop all by mouth until cleared. You don’t want to make your situation worse by adding more stuff to bloat out your intestines. [ more ]
Drbev603WOW! So helpful to know! I'm not sure I've ever had an partial obstruction. Thank you! [ more ]
LovelyCarrotSounds like you’re well past it now- but I get partial obstructions a few times a year and get hospitalized every couple of years, and my experience is similar to yours- even after it “clears” I’m in pain and bloated for a few days afterward with mild nausea and lack of appetite. I think it’s just the stretched out intestines returning to normal- takes some time. [ more ]
KgendronI honestly don't know. If Stelara doesn't work, there is Humira. I'm really out of ideas [ more ]
Scott FI’m glad you’ve been feeling better, Laura! Blockages are generally caused by something that narrows the small intestine. Food can get trapped behind the narrowing, and that can lead to all kinds of trouble, but food alone doesn’t cause the blockage. They can’t test for adhesions, which are a very common cause of blockages. [ more ]
LauraLeeHi Scott, I would like to believe my blockages are caused by diet, and no by adhesions. I was tested for everything on my last hospitalization. Leaks, strictures, Crohns, Pelvic muscle issues, etc. Last two days have been the best health wide I had in a long time (over a year) and hope it means I’m on my way to finally recovery. Thank you very much for your advise! It is so good to count with such a great supportive group. It makes a big difference in my life! 👍🏼😃 Laura [ more ]
Scott FMost blockages clear up on their own, so it can be misleading to attribute the recovery to the treatment (e.g. Cipro/Flagyl). The GI biologics can be reasonable choices for both chronic pouchitis and Crohn’s, and might indeed make you feel better. If the blockages are from adhesions, though, no medication in the world will help. [ more ]
CatyHello, People deal with medical issues on their own terms. I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy. In 2007 after 16 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent end ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband. The ET nurse and I found the perfect spot together. If a person is working with an... [ more ]
F'ing FistulaHey Gremlin, I know this post is a couple of years old, I was just wondering if you're still around and how you're doing now? My situation and feelings about it are very similar to yours, I've been struggling with my fistula for about 2yrs now and it's still getting worse. The psychological side effects of a complication like this are almost as bad as the physical ones and like you, I've had real trouble trying to talk to anyone about it in detail. Anytime I have actually tried no one seems... [ more ]
GenHello! I don't have any suggestions, just commiseration. I had a minor fistula that I lived with for about 10 years (my surgeon did not recommend intervention), until it spontaneously healed (no idea why)...for about 2 years. Unfortunately, when it recurred about 6 months ago, it was much worse and is causing me considerable grief. (Also chronic yeast infections--anyone else dealing with this?) I am also sort of avoiding dealing with this medically as I'm afraid the doctor will finally... [ more ]
Jan DollarGlad to hear the gates are open now. Some people are slower to start than others. It varies. Fun begins! Jan [ more ]
bob p3 bms today! no walk in the park though. should be getting out of here tomorrow. nice to know the plumbing is working. [ more ]
bob pI had the colectomy 6 months ago and just had a successful takedown 10 days ago. I've been in the hospital for 10 days and still haven't bm. last week I had an ng put in for my distension, hiccups and vomiting. since then i've had some vomiting 1 to 3 times a day, but they wouldn't remove the ng (7 days) until I sneezed and it came out. today is the best I've felt so far and got close to a bm a few times, just waiting for that. they know I won't let them put the ng back in, unless I get sick... [ more ]
Former MemberIs it hard keeping up with the bottle??? [ more ]
Deb COn the subject of enemas: I have discovered that I can use my bidet wand on my home toilet for this purpose, just hold it tight to the butthole and turn the water on. Much handier than messing with the enema bottles. I still take a bottle when I travel. [ more ]
CTBarristerI am guessing an almond is only slightly larger or perhaps even similarly sized to the capsules one is asked to swallow for the capsule endoscopy. I actually refused a capsule endoscopy that was recommended in 2007 because I looked at the pill and thought NO WAY am I getting that sucker down without choking. I was able to observe the pill because my father's friend was, coincidentally, an investor in the company that makes them and when my father discussed with him that I might go for the... [ more ]
SpookyUnless you have a known stricture, it's not likely that a single almond will cause any significant problem. If you'd swallowed several, that might have been more of a concern, but I wouldn't worry about just one. You may feel it when it passes, though, as it will be larger and harder than what you would normally pass in your stool. BTW, I see your post is a couple of days old. Did it ever make it through? EDIT - swallowing an almond with a loop ileo may be a little trickier. This would... [ more ]
BubbapupHow far are you post surgery. If it’s still in the first few months it will get better. But I’m 8 years out and I get butt burn all the time, to the point where I see blood on the toilet paper from my irritated skin. I use calmoseptine cream, have a bidet, use wipes at work, but I still get it. It’s just something i deal with now. I also try to take medicine and added fiber to decrease output. It sucks though. But maybe some changes like that might help a little. Hang in there! [ more ]
Former MemberAMEN!!!!! If you get it at cvs and sign up for extracare , you get coupons!!!! Yeah i miss spicy food haha, i use mild hot sauce now. Can you tolerate mild??? [ more ]
MikeEJ34Hey! Thanks for your reply! Based on CT scans and symptoms they believe there’s no true small bowel obstruction and has had him on an all liquid diet. They believe his appetite will return sooner than later, as right now he doesn’t have much desire to eat at all. At one point he was VERY nauseas and wanted to throw up (that combined with “10 out of 10” stomach cramps landed us in the ER. However, since going to the liquid diet, he’s been ok. I’ll certainly get a list of foods they believe he... [ more ]
nikikiHi MikeEJ34, So sorry to read about your Dad. I’d get recommendations from the jpouch doc re/ foods to eat based on what they found to be causing the issues. Did they find an obstruction? Or possibly the medical team is making a logical assumption based on symptoms? Best of luck to him in his healing. [ more ]
pammieskrhI also have an anal fistula for the past two years. Has anyone here had one repaired successfully? [ more ]
BurkeI this last year have had a anal abcess and fistula which goes from the perianal abcess inside the anal canal and have had seton placement to drain it. This has brought on a new indications diagnosis of perianal crohns and so it has been recommended for me to start using Imuran and Humira. Have any of you had success with Humira for these issues and for pouchitis? your responses would be great. Thanks. " The LORD sustains him on his sickbed; in his illness you restore him to full health."... [ more ]
Jan DollarJen, you are a trooper! I probably would have given up on the j-pouch long ago with your issues. One day at a time, eh? Kids make it all worth it! Jan [ more ]
David WI echo SJAN810's comment above. I think you're about to see a huge quality of life improvement. Be patient as your body heals. As you adjust to your ostomy, keep focused on how well you feel, and on how much you've improved. I admire your strength, and I wish you all the best. Keep us posted. [ more ]
SJAN810Duck11, Wow, I am so glad you finally found some answers! I am so sorry for everything you have been through, but like you said, you knew something was very wrong and this is confirmation of that! Now you can focus on recovering and healing and regaining some quality of life back! Praying that your recovery goes smoothly and you feel better very soon. [ more ]
abillusmcAlso vasoiline is very inexpensive at Costco and better than zinc oxide. [ more ]
abillusmcI am 71 and had surgery 2nd stage iyr ago and 3rd 8mos ago. I was getting ready to give up with my 25 plus BM a day All the problems in the world I saw on here that tincture of opium was used by some I got morphine sulfate instead. Its cheap and Costco sells for $39 what will last 2mos. It works BM are about 10 a day but solid and no anal pain. I am in the gym and have a life. Do not give up [ more ]
Krys777Thank you! That's why I am giving it another 3months before giving up. Here is to hopeful happy jpouchers [ more ]
Paul HBeen to Doctor, after all that I was right, its Gastritis. 🤔🤔 [ more ]
Paul HThank you all very much. Thankfully I had a moderate BM on Sunday followed by more & the pain has gone but still sore & feeling delicate & weak. Tonight I had a small baked potato without skin, puree carrots & some beans, all well tolerated. I have a headache that Paracetamol just about releives & am drinking plenty of liquids with added Sodium & Potassium. Waiting for the clinic to call. BTW, the stool softener, Macrogol was a disaster, made me leak uncontrolled that... [ more ]
Jan DollarYou have had good advice. I would also add monitoring for fever and/or low blood pressure. Jan [ more ]
JanW2Lizadair, Just saw this post , and wondering how you are? Last January I had a fecal transplant for C diff and am at this point doing well. It went quite uneventful and all payed for by insurance. Best of luck to you Janice [ more ]
Dancing GirlTHIS IS SUCH A GOOD TIP!!! I am going to print this out and put it in a few places. I have had my j pouch for about 13 years and it's crazy.. that I just forget about this tip.. BUT IT IS SO TRUE. It's like my body is really happy when I just have FISH for lunch. If I am still hungry in an hour or two, I eat some veggies (mostly cooked... !!!) , Etc. etc. So true about the pasta... plain pasta with tomato sauce.. or plain pasta with a little olive oil and veggies... or plain pasta with... [ more ]
WinterberryLizadair, ask your doctor if Florastor can help you with c-diff. Google c-diff and Florastor so you'll know what to ask your doctor. Good luck to you. It's hard. Try not to feel bad or worry Too much. Stress can play havoc on your immune system and health. Your body seizes up, holding tension and adrenaline and cortisone when you're in stress. [ more ]
Jpouch86thank you AllyKat. I appreciate the info and the dr referral. I hope you're feeling better soon! [ more ]
AllyKatI have floppy pouch. I needed a resection to fix the issue. And at the same time my bio drug stopped working. I’ve been pretty sick. I went to Dr Schen for a second opinion. He actually misdiagnosed me. He wanted to put those clips in. After talking to my GI and surgeon I refused and now glad I did. Go see Dr Milsom at Cornell. He’s very experienced in floppy pouches. And My GI is Dr Scherl at the IBD center. Message me if you even want to use my name. [ more ]
Jpouch86Hi all - I'm new to this group and I'm sorry to see that there are so many unsatisfactory outcomes here. I had a j-pouch procedure for UC done in 1986 and have had pretty much every complication over time - pouchitis, obstructions, fistula. About a month ago, after being unable to pass much of anything, I was diagnosed with a "floppy pouch". Dr Shen at Columbia did a scope and inserted some bands but there's really been no improvement in my situation. Like many of you, I'm miserable - just... [ more ]
Chook2Have noticed a big decrease in bowel movements since taking two teaspoons after a meal sived into a small drink.and the bowel movements are more formed and I feel fuller for longer.will definitely keep using Konsyl. [ more ]
Chook2I just read you take psyllium after a meal.I was taking it before a meal.Ive just started today so see if it helps.I seived two teaspoons into a small cup of electrolyte drink. [ more ]
CTBarristerPSJ, 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 ]
PSJI 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 nolanThank 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 ]
duck11Oh I feel this, vent away. I was the “mystery bowel blockage” person too for two years of hell, back and fourth to the ER, unable to eat, etc. Doctors sometimes would say “maybe it’s a blockage”, and other times it was exactly what you got or being told it’s in your head, or worse, sometimes accused of being a drug addict. Anyway, long story, but after 2.5 years I accidentally found a surgeon with compassion who, only going in a hunch that my j pouch wasn’t functioning, operated and... [ more ]
rosevioletBrian, does your insurance allow you to go to any hospital & doctor or are you locked into a medical group? If you can go to any hospital, go to UCSF emergency at Parnassus and they'll figure out what you need. If you're locked into one medical group (for example Sutter), you'll probably need some sort of authorization to go to UCSF or you'll get stuck with the bill. You need medical help now, as vomiting is serious and can bring on dehydration. -- Rose -- [ more ]
Former MemberGreat news! Actually, your symptoms are similar to how my pouch behaves during the first days of my period, when I get strong contractions and hormone changes. [ more ]
CTBarristerI am glad to hear there is nothing wrong with the pouch that requires the usual treatments. Hopefully your theory of pregnancy related Pouch complications is correct, because if so it will be a very temporary issue and you will be able to move past it. [ more ]
Scott FI'm glad there doesn't seem to be anything awful going on. If you've been straining to try to pass gas that might explain the painful enema insertion. Folks have described a bunch of positions, contortions, and maneuvers to facilitate passing gas (on and off the toilet). My favorite name for this is bathroom yoga, coined by one of our wittier members. You might try searching for some of those posts and seeing if any of that helps. Good luck! [ more ]
Connie GildersleeveI had one that put me in the hospital. The doctor put me on an IV fluids, and if I couldn’t pass it in 24 hours they would have to perform surgery. Thank goodness I did and no surgery. I used to get plenty of partial blockages, but since I now take nightly warm water enemas, I haven’t had any problems. [ more ]
LovelyCarrotI get blockages a lot, have for 20 years. The best results I’ve had are when the GI does a scope with balloon and stretches open the stricture that the food has packed up against. They don’t suction it out, but once the pipe is opened … it works 😀. Usually I go to the ER, get on morphine for the crazy pain, get in a bed, and then have the scope after a couple days to see if it clears on its own first. Thats a pretty recent development though for me. For years prior it was an NG tube and... [ more ]
skn69I never had a j pouch but was functionally incontinent for years pre-k-pouch. Same protocol as Bill...light meal beforehand (or no meal), empty out as much as possible and RELAX. As for the conversations...you need to have a sense of humour. So does he. You need to be able to discuss how you are feeling before, during and after...to feel free to say stop, wait, I need a break so that you can run and let the gas out or whatever...Then come back and feel comfortable. Also, put a pretty towel... [ more ]
CTBarristerI have never had any issues in 26 years although I can understand the concerns. As long as we are not talking about anal sex, judicious eating and judicious use of Pepto Bismol or Tums should nip gas concerns in the bud. My main Issue these days is ED, which sucks but has more to do with my age than my Pouch. Anyway good luck. [ more ]
BillVDuring the 30 years I had a J pouch, I would be sure to empty before having sex. It was also helpful to eat lightly beforehand. In my case, it seemed that knowing what I would be doing had an effect in slowing bowel activity and preventing accidents. Anyway, you should explain fully about your condition and the possibility that you might have leakage during the act so there will be no surprises if it happens. Try to forget that you have a J pouch and enjoy your encounters to the fullest. [ more ]
Colleen2001I have had very negative reactions to Flagyl. It makes me feel so nauseous and on the verge of vomiting the entire time I am on it. I haven't been on it in years, as my docs always prescribe something different due to my reactions. If it the side effects are worse than what it is meant to treat, I feel it's not worth it and would suggest you ask your physician for an alternative. Best of luck! Colleen [ more ]
CeeeeCeeeeThe only reaction I have to Flagyl is experiencing a slight case of nausea the entire time I'm on it. I get the dry heaves! When given to me in the hospital, IV, they added some anti-nausea meds. Because I don't really mind losing my appetite for a few days, I don't mind this symptom. As long as I stay hydrated, it is a 14 day diet for me! [ more ]
lhh65I was on flagyl when I had C. Diff. in my colon, and, yes, I had problems with it, too. In fact, it seemed to increase the bleeding I was having. Plus, every day in the afternoon, I would get terrible pain in my upper back. It was unbearable. I was on Vanco at the same time, but it was the flagyl that caused the problems, as I was on Vanco for the greater part of two years and never had side effects like that from it. I hope you feel better soon. ~ Laurie [ more ]
tulsamomFYI Dr Remzi is now at: Northwell Health Center for Advanced IBD Care , on Long Island Good luck Ljz. I'll let y'all know how the appointment went, after Sept. 9th. [ more ]
LjzFollowing, May be seeking appt with Dr Remzi as well. Ant other patients who’ve had surgery with Dr Holubar at CC recently, or kind of recently? Other CC surgeons or gastro who deal with problem jpouches? [ more ]
Jan DollarI took Humira for a couple of years, but it was for arthritis, not pouchitis/cuffitis. Then, I switched to Simponi, then Cimzia, and now Remicade. Always just one biologic. You never take more than one. I did travel while on Humira, but only when I was on it every two weeks. I planned my travel between injections so I did not have to deal with keeping the syringe on ice. Simponi was once a month and Cimzia was every two weeks. My Remicade schedule is every six weeks. Jan [ more ]
Tino2000Scott and Jan, thanks for your answer, My doctor saw me on saturday and told me i have some cuffitis, he didnt see upper part so i dont know how the pouchitis is. but the blood test the c reactive protein is a little high, i hope its only for that I am starting with cipro and flagyl every 12hs for two weeks and cortifoam at night(rectal administration). I hope it will get better. One doctor thinks that i could have crohn but he s not sure. Jan how long did you take humira? do you leave it... [ more ]
Jan DollarI needed weekly Humira when I was on it. Also, switching to a different biologic is not a bad idea. I am having good results with Remicade right now. Hopefully, the azathioprine will help, but it generally should be started before you go on a biologic. You may have already developed antibodies against Humira, so it may not work. I would also prefer rectal steroids over Entocort, but a number of folks here have had decent results with it. Is your doctor thinking you have Crohn's now? Entocort... [ more ]
rebelHi Haidalyn How are you doing with the Imodium now? Is food still passing through you? [ more ]
rebelhttps://www.j-pouch.org/pages/illustrated-pouch Just as a general comment, people with Ulcerative Colitis, Crohn's Disease etc, need to be proactive, bearing in mind that when your suffering the symptoms, your busy fighting a battle to keep well. If you've got family and friends, they can help hugely with all sorts of things, emotional support, research, advice etc. Unfortunately, relying on professionals is 'hit' and 'miss', also, these are conditions that need to be managed daily, they... [ more ]
JeffsmomI thought the ilium was the right side of the large intestine . Thank you for the information. You would think I would know this stuff! [ more ]
Jake McCoyI have to revive this old thread and thank everybody for the good info. RJG-Ross, I plan to get cactus paddles and try that out. I found this thread and website via a Google search. This is my first post on this site. I got back into running again after not running for about 15 years. I'm 41. I got my J-pouch 6 years ago. I bleed from from my anus occasionally when I run or bike. I think it's because running and biking are the only activities in which I push myself into a second wind. It... [ more ]
RJG-RossI haven't been seeing any blood in well over a month now and haven't been eating nopales in a while; at least two months. The past few weeks I've been using ground flax seeds sporadically. Yet I've been running over 35 minutes 3-4 days per week during a period of very heavy work without bleeding. So, I'm thinking that the ground flax seeds healed whatever it was that caused the bleeding while running. Ground flax is much easier to ingest (2 tablespoons) in a large glass of lime or lemon... [ more ]
ChristineinDenverAll of this makes me so much calmer. I have been training for a long bike ride and did two 30 mile rides over the weekend. I felt great until bedtime ~ when the bleeding started. Sounds like a combo of dehydration and perhaps the irritation from the saddle could be causing this. I have been using the ground flax with great success, but will also add some nopales to the regimen. [ more ]
DebraIf the rectal pain continues, you might want your surgeon to rule out fissure. I use vicodin and medical marijuana for chronic pain and spasms caused by fissure and stricture at the anastomosis. [ more ]
Colleen2001Thanks so much for all your responses! It has been so long since my first surgeries that I don't think I am cutting myself enough slack. My first takedown was 10 years ago, and I don't remember it being this hard (although I am certain it probably was!). I called my surgeon and the nurse I spoke to was so helpful. She echoed what you all have said and gave me some great advice. I am to start immodium as well as go back on the pain meds. Once my output slows and all the inflammation settles... [ more ]
Spooky16 is way too many. Usually 6 per day is the max. Furthermore, ibuprofen is often contraindicated for IBD, not to mention, excessive use can lead to kidney damage. It's okay to ask for something stronger if you're having that much pain, especially since you are only 2 weeks out. I was still in the hospital and on a morphine drip after 5 days. Call your doctor; you should be able to have the prescription refilled over the phone. [ more ]
Jan DollarI had an incisional hernia repair about year after my j-pouch surgery when I was about 41. It was not as complicated as yours. However, it was supposed to be an ambulatory surgery and I wound up being kept overnight. I had a mesh repair. I don’t remember any serious issues with it. I did have a seroma that needed draining, but otherwise it was pretty much a nothing burger compared to my j-pouch and the litany of complications from that. As far as your age goes, your overall health is more... [ more ]
Former MemberAwesome!!! Please let me know how that goes!!!! I am praying for you. [ more ]
Former MemberDamn! Thank-you for sharing! And sorry that happened to you. That does sound like hell. Were you drinking a lot of water that day before the obstruction happened and during the meal??? And did you keep eating even after being full??? [ more ]
TCMPete, I know the routine but thank you for the laughs. The obstructions are anything BUT funny but we have to maintain our sense of humor...while ditching any shred of modesty. You nailed it! [ more ]
PSJI had one obstruction a couple of years ago and it was hell. I put it off thinking I was just having a few bad days in a row. This was Labor Day weekend and I was eating all sorts of crap. The last thing I ate was mac and cheese with about 40 different cheeses in there (seemed like it anyway) and I swear that is what finished me off. I made it through Monday and Tuesday morning I was on my living room floor and a huge amount of pain. I went to the ER and they gave me an NG tube which fell... [ more ]
AMBHi Len My gastroenterologist friends always said to avoid red or purple Gatorade/ juice/ jello or ice pops the days before the procedure. Other colors - like lemon-lime green Gatorade, are ok (I was never sure about which side of the line Orange Gatorade fell. Your post got me thinking of my last prep. My written prep instructions were to buy one 64 oz or two 32 oz bottles of Gatorade and one 8.3 oz bottle of miralax. I couldn't find 32 oz bottles. I don't think they make them any more. So I... [ more ]
Len78The first nurse the main one of the dr said I should see yellow water with 2 miralax capfuls with just after consuming a couple glassfuls bc there’s no colon and I’m doing clears the 28th one day before pouchoscopy i really don’t know what approach to use I have the 4.5 oz empty enema bottles ready. im worried about stool sneaking down from higher up stream wit I don’t do miralax I still want to do an enema 99 mins before arrival/pickup to hospital [ more ]
Len78I have 10 bottles of glacier cloudy cherry white flavor of zero Gatorade 28 oz bottles ill use along with drinking tea a black coffee or two and chicken broth every hour the day prior i stocked up certainly on the Gatorade, the nurse for my gi said to put 2 capfuls per an 8 oz cup of whatever I’m drinking every 10-15 mins of miralax another nurse must think I’m coloned she said mix 32 oz if miralax with 7 capfuls of miralax at 6 pm the evening before the afternoon day of piuchoscopy I have a... [ more ]
Former MemberOh that is good! Glad you were not offended me. I know when we poop the sounds are like gunshots! Haha [ more ]
Sara MarieIt was an apt description and I thought it was funny! This was on of the boyfriend's ways of saying that he loved me. Needless to say, I was not offended. [ more ]
VergieOMG I would do anything to not have an obstruction! I have had so many I lost count! I’m seriously thinking that surgery is the answer. thank you for sharing and I’m so happy for you! v [ more ]
Maverick PlusI used to have obstructions every few years in maybe a 12-year period. For the last one, I had to have emergency surgery because my bloodwork indicated ischemia. Once I was opened up, they found that my intestine was twisted. They thought maybe that was my problem all along. It's been 10 years and, knock wood, I haven't had an obstruction since. I wish you the best outcome! [ more ]
New577I am guessing, food. I had a chocolate protein bar for dinner last night. At 1am, I emptied before bedtime and BM was black. Today back to brown color. [ more ]
Former MemberMaybe you should get a second opinion from a gastro. [ more ]
grandmaof1Do you think you could have cuffitis? I have those same issues when I have cuffitis. But I also have other issues at the same time. The urge to push and the pain in my rectal cuffitis. I have never felt this type of pain. It’s unreal. Let me know what you find out. [ more ]
egkfor whatever it's worth, sitz baths are fine but if you have a true fistula it can be life threatening. i have three setons to drain active fistulae, and after the second seton i was so tired of being cut up that i decided to see if i could muscle through the pain. took 2 days to go to ER. the morning of the 2d day, my perenium had swollen to the size of ping pong balls. i had sepsis and had to be hospitalized for 4 days on all kinds of nofun iv drugs. i don't mess around with them anymore. [ more ]
PouchomarxWith my first pouch I had a leak at the tip of the jpouch. My GI, Dr Bo Shen at Cleveland Clinic tried an experimental procedure with fibrin glue to close the leak but it failed. I eventually had to have a pouch redo as I had other issues as well. [ more ]
TONY LAVICTOIREThanks everyone for you feedback! Pouchomarx, it does seems odd I feed that the physician could diagnose a tract by feel but I can tell myself that something hard like a track is happening down there...But I’d sure prefer it to just be a hémorroïdes... LORI726, I’m sorry you had- and perhaps still have- to deal with fistulaes and abscesses. I heard of Fibrin Glue injection - or other plug treatment - that’s not invasive and proven to work somehow. I sure hope that a seton isn’t my only... [ more ]
AndreitaI'm on probiotics four times a day and dilate once a day. Once I lose control of my bowels I'll start cipro. But it hasn't happened yet. I'm not getting worse. So I guess I take it. [ more ]
AndreitaI don't think my pouch can mature with constant inflammation I haven't asked my gi about the suppositories yet there is no need to switch. I just think it would be logical but I'm no expert [ more ]
TE MarieYes our j-pouches grow. I think it is normal. I'm glad she is going to do a scope. Lets hope she figures out something to give you relief! [ more ]
CTBarristerThe Pouch expands but only in the first year or so after surgery, not 20 years after surgery. When I had surgery I was specifically told by my surgeon to resist the urge to defecate and hold my bowel movements as long as possible in order to stimulate the Pouch to expand. I thought this was a pretty fundamental standard drill with anyone who gets a J Pouch. In any event it isn’t really clear what is meant by the comment that the Pouch “has grown.” There is a period of natural growth and you... [ more ]
duck11HI all. I just had my consult with the 2nd surgeon--not a lot of good news but she was at least very compassionate. She is going to do another scope herself to see if there are any weird angles etc. above the pouch that could be causing the obstructions. It is interesting how the scans I've had are interpreted differently (others that were said to be clear, she said they were not and showed various things that were a bit odd). She also mentioned my pouch looked like it had "grown" since... [ more ]
Barb.eveThanks, all of you for the suggestions regarding blockages. I had my reversal almost 4 weeks ago and had a (partial) blockage 3 days ago. No idea this could be so painful! I know it was the raw carrot that I was happily chewing away on that was responsible...no more raw carrots for a while. It is very helpful to read your responses, again, thank you! [ more ]
JeffsmomSharon, nice to see you are back in the States! Wish I was in Miami about now, anyplace but here! Jeff is making me nuts. Has not learned a thing from his total blockage last month. Eating anything and everything and gaining weight. I'm backing off completely. Mic he gets. Another blockage, he is on his own. I can't sit and watch him. I'm waiting for him to blow his J-pouch. Good news! We are going to Quebec end of August. Any suggestions on what to do or where to stay? And more than likely... [ more ]
LuckyLadySounds relaxing. We were in Miami for a conference several years ago and visited the Keys (loved it there!) and the Everglades afterwards. I sent a couple of personal messages earlier - did you get them? I've been feeling great since that horrible episode in March - the new tube has been working very well for me - 4 months now. I got my life back! Pam [ more ]
Jan DollarThey can give the Benadryl IV too. As time goes on, you can take your own antihistamine at home before you leave. Jan [ more ]
CTBarristerIf you want a suggestion on a book, I just recently got through reading The Red Sparrow by Jason Matthews. It's a really interesting spy novel, about American and Russian spies who are spying on each other, written by a retired CIA agent who served 33 years overseas, including in Moscow. You will learn more about the intelligence business, from the perspective of those actually out in the field, than just about any other spy novel that is out there. I highly recommend. [ more ]
Mema 1I have horrible veins, so hope it won't be a concern. I'll just make sure I drink a lot of fluid before going in for treatment. Since the weather is still cold, that will be a concern as well since they don't pop when I'm cold. I'll have them get those hot pads as well. Every person that I have spoken to, that is using remicade, said that they give them two doses of benadryl first and benadryl gives me horrendous butt burn, so I'm dreading just thinking about it. With a little bit of luck I... [ more ]
AliceMayThanks for the replies, I must say I feel a lot better knowing it's probably a normal response after surgery. I think after years of suffering with colitis every time I see blood I think the worst. I will take your advice and contact my nurse just in case, will also try different positions and see what happens Alice [ more ]
PluotI had the exact same thing happen to me between Steps 2 and 3, but it was only noticeable the first few times after surgery. I would probably say to double check with your surgeon but it's likely nothing. [ more ]
mgmt10I have no issues at all in any position so I would seek out an answer with your doctor for peace of mind sake. [ more ]
fourgrubbsThanks for your reply! I don't have a lot of output but frequency and then hardly anything comes out. I do have a lot of gas right now....I can't even imagine what could be blocked in there. I am still having some pain but it's better. I didn't mention this in the last post but I was diagnosed with having ulcers in my pouch at the last two scopes. It almost feels like that...like the ulcers are just worse in there. I see this doctor tomorrow and we'll see. My next step is a larger hospital... [ more ]
ElmerFuddSo blockage is a possibility - your outward symptoms make it sound more like that, or gas. You didn't say anything about your outpout or lack of it. That is important when assessing blockages - or partial blockages. Usually you will have the following with a partial blockage: - Abdominal pain at the site of the blockage - Output, but less than usual - Possibly diarrhea or loose stool - More burping than usual With a complete blockage - take those symptoms and amplify them (abdominal pain -... [ more ]
fourgrubbsThanks for your reply. I was thinking of calling the old doctor in Philadelphia. They know my history the best anyway. My appointment is actually Wednesday and I am hoping to hold out until then. [ more ]
KelsieMy daughter sounds so similar. She was having terrible pain at the connection site, and then began having problems emptying. MRI appeared normal. Biopsies showed pouchitis but she only had one actual ulcer and otherwise her pouch looked great. The pain had become very debilitating and the only thing that would help is oxy. Their suggestion was pain rehab!! They couldn't find an obvious reason for her pain so tell her to just accept she has to live like this and learn to deal with it---NOT... [ more ]
liz11regina- I want to suggest for you to somehow get a hold of Dr. Shen. You need to tell him exactly what you have told us here. Also, sometimes he has access through sales reps, etc... to get samples, freebies. He helped me get a a large volume of a prohibitively expensive prescription nutritional supplement by putting his sales rep in contact with me. Can you schedule another appointment with him, write down all of your issues and concerns, and go over them with them. Sometimes in initial... [ more ]
ReginabeanHow are you doing now? I hope you are doing better. I can relate with you. I have been going through something very similar. I have been going to the CC and Dr Shen said I have afferent limb syndrome at the top of my jpouch. I also have an ulcer and tissue buildup at the bottom of my pouch caused from straining. He prescribed me the lactulose and belladonna opium suppositories. It seems to help. I also have been married to the toilet and am completely exhausted. I try to go and only a tiny... [ more ]
Former MemberOh nice!!! Thank-you for that info!!! I remember you said Calmospetine is not good for yeast infections because it traps the yeast??? [ more ]
Sara Marie@Former Member, I haven't experimented with multiple jock itch creams. The one I have tried which seems to work is Walgreens generic "Butenafine Hydrochloride Cream 1%." I like prefer normal humans as doctors, too! [ more ]
Former MemberYou both have J-pouches?! Twinsies!!! How is your daughter doing now??? [ more ]
CTBarristerIf you guys want cheap and natural, how about the Costco Kirkland Brand Psyllium Fiber Capsules? The only ingredients are Psyllium Husk and Gelatin, the latter of which is presumably used in the capsule coating. 720 capsules for $28. [ more ]
Jfill21Do something simple first. Stop pushing. Doing so could get your pelvic floor muscles working against each other and you can get anal congestion. I’m experienced unfortunately. Use Metamucil and give your pelvic muscles something easy to move. Oatmeal works for me. I also bleed when I push. That area is already “friable” as I was taught, and easy to pop a hemorrhoid. Plus, I use Ilex cream and push it in deep which also helps me to relieve anal congestion. [ more ]
Maverick PlusI was thinking it might be small intestine bacterial overgrowth (SIBO) as AMB mentioned above. I guess it's time to see your GI doc. [ more ]
AMBI had very similar problems right after my takedown. Mine was caused by a mucosal prolapse - sort of drooping/folding of the pouch lining made worse with straining, the resulting which was 80% narrowing and incomplete emptying. Treated simply with endoscopy. Tends to recur, and it goes hand in hand with bacterial overgrowth, so on maintenance antibiotics. I also had the defecogram Scott mentioned in order to diagnose. [ more ]
SteveGA fissure gets painful when things get stuck inside (during a BM), for example little undigested peanut pieces. Fissures tend to produce a wrinkle in front of them, toward the outlet. That makes them even more prone to contamination. If you identify the fissure soon and keep it clean, it can heal. People with a colon and formed stool should keep their output soft, so the anal canal is not stretched too much and the fissure breaks open again. There are also special creams for such fissures. [ more ]
Sara MarieWhen a fissure does heal, how do you know? What's the difference between clearing and healing? I have had them (or maybe painful hemorrhoids?) off and on over the years. [ more ]
SteveGLinda, if the pain goes away when you do an enema this is a clear sign for a fissure. You may use clear water or add a little bit of salt to make it isotonic, there is probably not much difference. People here often recommend to use an empty fleet bottle do do the enema. But remember that this is only a quick fix to clear the fissure. You are dealing with this issue for such a long time now, that there is scar tissue at the fissure. This won't heal by itself any more most likely. That's why... [ more ]
PalsDoug, I’m sorry to hear that. I did not read everyone’s answer but Rifaximin is for you. It will help. [ more ]
Cb2009I haven’t been tested. I have had it before. But I did do almost 3 weeks of Vancomycin as the first one I tried. So hopefully if it was that, that would have taken care of it. But it didn’t help at all. [ more ]
LovelyCarrotInteresting. I'll have to ask my GI about self dilation options. I get the scope currently for stretching the anastomosis, but also to check for the state of my chronic inflammation in that area, so I'm not sure I'd do self-dilation anyway. BUT - I'm curious about it as an option for blockages, as that's the point that I have blockages due to stricture at the anastamosis where the pouch connects to the rest of the small intestine. Thanks. [ more ]
Big DHPretty sure what you have dilated by balloon is the attachment between the pouch and the rectum... technically the "anastomoses". Self-dilation is an option using Hegar dialators. Apparently strictures can commonly form there or the opening can gradually become smaller needing dilation one way or another. [ more ]
Former MemberI am glad you are great! I am too [ more ]
Kh1988My bladder seems ok, no changes with it really. It’s mild/moderately prolapsed but has stayed pretty stable. Trying very hard to not strain and make it worse! Hope all is well with you [ more ]
Former MemberYou are welcome dear! I hope it works as it has worked for other people. Let me know how it goes How is your bladder??? [ more ]
CTBarristerI have not heard of biopsies being able to determine the existence of Crohn’s or not, but in any event the actual diagnosis at this stage less important than knowing the extent of it. Inflammation can be labeled but regardless of labels, it must be treated. In this case, the treatment is takedown. [ more ]
Kh1988Wanted to leave an update! Got a call today from my surgeon. She said the biopsies came back ok. Only showed mild inflammation. Nothing concerning was seen and nothing that appeared to be Crohns. Most likely diversion Pouchitis. So we are moving forward with takedown in one week! [ more ]
Scott FThe doc has you on the right path. If it’s diversion pouchitis then the best treatment is takedown. If it seems to be IBD-caused inflammation, then getting that controlled with medication before takedown will give you a better result. The biopsies aren’t perfect at telling these two different conditions apart, but they give you better information than you would have otherwise. I had a fair risk of Crohn’s before surgery, and it’s never been ruled out. Pouch failure is more common in Crohn’s... [ 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.
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