amandajbThat’s great. I think it may be safe for a short period. [ more ]
Ryan138I recently had a large kidney stone removed and was prescribed 800mg ibuprofen… I used them for a week and had no pouch issues out of my normal insane life. Maybe I just got lucky. [ more ]
JaypeaIf you are really worried about an ulcer you could ask for an H pylori breath test. It's easy and non-invasive. If that is negative then move on to a more detailed discussion with your surgeon. In my opinion it sounds like the angle of your intestine is causing some kind of obstructive symptoms. Ulcer pain doesn't generally make you vomit but an obstruction sure will. Changing your diet to mashed up foods with low fibre may help to see if you can alleviate some of the symptoms may provide... [ more ]
Scott FOnce you’ve thought through the impact of the problem on your life then a frank conversation about the options, risks, and benefits with your surgeon is a good idea. No one wants another surgery, of course. [ more ]
BubbapupI eventually went to the hospital and they didn't find anything! It must have cleared or maybe I didn't have one. All that work-up for nothing. I feel so defeated. I'm still having pretty severe stomach pain (going 10x+ per day so that's back to normal). [ more ]
Scott FUsually once an obstruction has you vomiting it's time to get medical help, but generally it would start hurting before vomiting if backed up intestinal contents had caused the vomiting. In any case, if you can't keep fluids down you're on the clock, and will need IV fluids before too long. If your pee gets dark then you're getting dehydrated. [ more ]
Scott FI stay on the antibiotics continuously, and I have no pouchitis symptoms or “flares.” I have tried stopping them a couple of times, but the symptoms return, and who needs that? If the antibiotics fail I will move to biologics without hesitation. [ more ]
EzzyThank you so much. Happy for your improved health. [ more ]
Scott FI had a marvelous scuba diving trip to Cozumel a few years back. I was careful to drink water that was represented as filtered, and I didn’t get sick. The hotel had plentiful and accessible supplies of filtered water, as did the boats I was on. It’s worth noting that Xifaxan is now recommended for the treatment of Traveler’s Diarrhea, in case that motivates you to bring some along. [ more ]
CTBarristerI was in Mexico in the year 2000, and was a lot younger and did some things that were unwise and I wouldn't recommend now. I didn't get sick at all, but probably wouldn't repeat some of the risky behaviors I engaged in. I was based in Cancun and stayed at the Club Med there. I booked a bus trip excursion and tour to Chichen Itza, which as I recall was around a 3 or 4 hour ride. We stopped at a village and ate lunch at some random local restaurant way, way off the beaten path. I also booked... [ more ]
janiej26Hello, thanks for reviving the convo. When I went back in 2016 I remained healthy the whole time, did not get sick and actually felt quite well. The only touchy part was when we were traveling between Oaxaca to Mexico City the first bus we took broke down and it was a very long trip back. The TP ran out on the bus (luckily I brought some along), I ran out of water and didn't have enough food. So, I would make sure to carry a roll of extra TP if you're away from your lodging for a time, pack... [ more ]
Scott FAnna, Augmentin does sometimes cause hepatitis, and that may be what has happened to you. You probably shouldn’t feel comfortable with it any more. I’ve been on Cipro for 15 years, so I guess I’m more comfortable with the small-but-real risk of tendon rupture than I am with transitioning to a biologic medication. It helps to spend the time to experiment to find the lowest effective dose, since this will also tend to minimize the side-effects. [ more ]
Anna625I've been on Augmentin on and off, most recently for 8 weeks (2x a day for 4 weeks, 1x a day for 4 weeks). Now my liver levels are high so I have to get a liver ultrasound. Also I still have pouchitis so after the ultrasound I'll see about getting back on an antiotic or a biologic. Augmentin is the antibiotic I feel most comfortable with - Flagyl gave me a bad taste in my mouth, Xifaxan didn't work and with Cipro I'm afraid of tendon rupture. It is a super bummer that with every medication... [ more ]
Former Memberthanks for the input, guys! its much appreciated! [ more ]
Scott FNew577 makes an excellent point. I had no stoma, but like anyone after abdominal surgery I have adhesions, and those don’t slide around quite like an untouched gut. A sudden blow to the wrong spot can cause an adhesion to pull hard on something soft, and that can cause trouble. [ more ]
New577Like Scott said, your pouch is mostly in your pelvis, so I think you are relatively safe in that regard. However, I had a two step process, and I have taken some accidental hits to the former stoma/takedown site. That spot is still sore two years later. My fear is that some scar tissue will break off or decide to relocate itself. maybe some rib protection device that wraps around your abdomen should be considered if your paranoid like I am about something going amiss during this activity. [ more ]
Sara MarieWhat color is the blood? Bright red or dark? If it's bright, it could be an irritation at the exit point. Lots of bleeding can happen with a hemorrhoid, for example. [ more ]
Len78just a thought, and forgive me if im off base in my quest to help Mema but what about an anal mamotry test? could that test alone help reveal answers? obviously it isnt pouchitis. i dont know. how about a defography test? trying to help. forgive me if im off base. best wishes @Mema 1 --len [ more ]
Scott FMema, I’d guess that the timing is related to your eating and drinking habits, but it’s hard to know for sure. After I was on Cipro alone for about 8 years it slowly lost effectiveness - this crept up on me over many months, so gradually that I didn’t notice the changes. In my case adding Flagyl did the trick and got me back to a good situation. Pelvic floor dysfunction is when the muscles don’t work together properly, with some relaxing as others contract, so instead of easily letting the... [ more ]
New577I’ve had SIBO 3 times since 2022. Each time I took Bactrim DS for about 21 days to get rid of it completely [ more ]
Maverick PlusI had SIBO for quite a while before it was diagnosed. My GI doc prescribed doxycycline (spelling might be wrong) for 2 months and the SIBO is now gone. FYI: Xifaxin didn't work for me. Maybe doxycycline (not expensive) might work for you. [ more ]
A.JThank you so much Scott. Hope you are well !! [ more ]
Scott FHopefully you told your doctor about what you’re feeling when you wipe. That could be as simple as hemorrhoids or as problematic as pouch prolapse, Either one can sometimes interfere with pouch emptying. It’s important to avoid straining on the toilet, which can make everything worse. [ more ]
A.JI called my doctor and he just called in Cipro for me, I'm trying to get in ASAP. My concern is what I felt back there when I wiped, I could be wrong but it felt like it was part of the pouch. When I push too hard, the pressure I feel compares to a balloon being filled with water and how it weights down. [ more ]
melissa111I think they checked my blood pressure when I went to the hospital and it was normal. It's always normal whenever I go to the doctor but I feel normal whenever I've went to the doctor, so I don't know if that means much. [ more ]
KushamiI thought adrenal because of the salt cravings, fatigue and loss of appetite. Also maybe diarrhea, although that’s hard to say – whether the diarrhea is part of the episode or the diarrhea is a result of your losing your appetite and not eating much, as you thought it might be. https://www.mayoclinic.org/dis...craving/faq-20057988 Did you happen to check your blood pressure during an episode? Sorry the endocrinologist was so unhelpful. [ more ]
melissa111Adrenal? I never thought this could have anything to do with that. I have suspected that I have some kind of hormonal problem going on for years, though, because I was on an extremely high dose of prednisone at age 14 to save my colon the first time around and I always suspected it messed something up. Ever since then, I've had an unusually high resting heart rate. I've also had calcium kidney stones and I have calcific tendonitis in my shoulder. They told me that normally it's older people... [ more ]
sahbumnimThank you for your response I’ve had my pouch since 2005 and the past 2 years my level has been rising. After covid I got pouchitis and it went even higher. [ more ]
CVPYes! After my total protocolectomy, I caught a bug and went in for fluids. When they took my blood and ran my numbers, my bilirubin (and other liver numbers) were off the charts. I was hospitalized for 4 days and eventually it came down. Doctors had no idea what happened but threw around that maybe I had Gilbert’s Syndrome. Since then, my number is a little elevated but no one is worried about it. The whole thing was strange. [ more ]
Sara MarieThe psyllium generally improves the consistency of what is coming out and actually decreases irritation because the poops are more smooth and are less frequent. If you were going to take it when there is still a bit of inflammation happening, I would drink lots of water, and I bet it can have a positive effect on the inflammation/irritation as well. Also with the aloe, I would start with just as small amount just in case you happen to be allergic. It's not common, but everyone is different! [ more ]
Cb2009Thank you! I went out and got an aloe Vera plant, will see how this does. Once I get the swelling down I need to try the psyllium husk. I see everyone saying this is good. Would love to empty quicker and more thoroughly in general, even when not inflammed! [ more ]
Sara MarieYes, I have definitely put the aloe up my bum a little ways, because sometimes the swelling is more on the inside. It reduces inflammation and decreases the healing time for me. I have had the clustering thing before, but isn't as often since I started taking psyllium, the universal poop regulator. I take a heaping teaspoon in 4 oz water. I add the water into a small jar, then the psyllium (fine ground & organic is best for me), put on the lid and shake vigorously, then drink it right... [ more ]
SteveGIf you are lucky, inflammation is not yet chronic and you can get rid of it with budesonide or antibiotics. I started with budesonide 10 years ago. It calms down inflammation a bit, but it can not heal my chronic pouchitis / ileitis. Nevertheless I am using it since then at a reduced dose, at the moment only half a capsule of Entocort (1.5 mg) before dinner. If I try to stop it, I feel inflammation (cufftitis I guess) after about 3 days. [ more ]
CTBarristerThese findings are very common and virtually the same as mine (like Steve I am less inflamed in the pouch than in the neoterminal ileum and inlet), although usually not so soon after takedown. Usually more like 10 years or more. And throwing a Crohn's label on it really doesn't help matters, because the labels no longer matter. It's inflammation of the bowel, it has to be treated, and either you will respond to the treatment or not. And guess what? All the treatments are the same regardless... [ more ]
mrwolf88Thanks for sharing, Steve. It's so helpful to hear about your experience as it provides some much needed perspective. I asked my doctor why we weren't starting with antibiotics and she said that she thought the steroid would help more with some of the inflammation above the pouch. I am still interested in at least trying antibiotics before I consider stronger immune suppressing meds. During the pouchoscopy they were on the lookout for any narrowing at the former stoma site as that is where I... [ more ]
Sara MarieWell then I hope this can be figured out so you can go! Maybe the lower dose of antibiotics like Scott takes will work for you. I’m sorry I had no idea about the PTSD and mental health problems. Maybe you wrote about it and I missed it. I’m one of those people who likes to crawl under the porch and be alone when I’m sick, and trips are the worst for me. Maybe not the best thing for my mental health but I seem to get by. I wish you the best and some solution/relief for your trip! [ more ]
Scott FYou have a little time to experiment with a smaller dose, which would be better (if it works) for longer-term use. For this purpose the rapid resumption of symptoms is useful, as you may get clarity more quickly. I hope you are able to make the trip and have a wonderful time! Good luck! [ more ]
Scott FI’m in the two-enema group, but I do both the morning of. T liquid diet starting the afternoon before is a good addition. I’ve never used any sort of laxative to prep for a pouchoscopy. Technically we can’t have a “flex sig” because we don’t have a sigmoid colon, but they often use the same flex sig scope. [ more ]
CTBarristerLiquid diet commencing noon the day before, 2 tablespoons Milk of Magnesia 8 pm the night before, Water enema the morning of, repeat if not clear. [ more ]
New5771/2 of Miralax colonoscopy prep. (238 grams in 64 oz of liquid) becomes; 119 grams into 32 oz of liquid in four 8 oz servings. does the trick and cleans me out perfectly. [ more ]
JaypeaI have never had a pouchoscopy with sedation. Lots of scopes (upper and lower) with Fentanyl and Midazolam. I like that cocktail and it doesn't leave me too drowsy afterwards. I soak up the meds, am out for 20 minutes then wake fresh as a daisy. I'm going for a non-sedated pouchoscopy next week....let's see how this one goes. [ more ]
SteveGI had almost all of my pouchoscopies without sedation. Except those rare occasions when a gastroscopy was done right before. I didn't feel too uncomfortable and the advantages are that I can see the whole process live on the screen and that I can walk home alone or drive afterwards. [ more ]
Sara MarieI saw some of those. I wish they would make a bendy one that is both bidet and enema bottle. They have some straight ones that are both. Why not a 2 in 1? [ more ]
ktaI just went on to Amazon and chose one. Make sure the squirting part bends so you can target the area you want. If I knew how to post a link, I would. [ more ]
PouchomarxDr Shen always told me some ulceration along the suture lines are normal and he never mentions it on the pouchoscopy report. [ more ]
vanHey Jacqueline. I wanted to ask what did your Dr suggest to do about the ulcers?. During my recent s.scope my Dr mentioned I had some ulcers but I wasn't given any treatment. [ more ]
ktaI got a letter from my doc to have bathroom accessibility at all times. I was a teacher and it was not uncommon to be assigned a new room far from the bathrooms or in a portable. One time an overeager VP called me on my trips to the bathroom. All I had to do was call HR and she backed off. [ more ]
MysticobraIf you need it go for it. My wife is disabled. She can't even get it. They have refused her several times. And she is truly disabled. So some get it some don't. What gets me is she really is a candidate for it but refuse to give it to her. That is where my thoughts go. I'm not saying you don't deserve what you have. But alot of people skirt the system and those who don't are just left out in the cold. Like my wife. It's a sore spot for me. I see her and her pain everyday. But a judge makes a... [ more ]
DerrickYea it definitely threw it through a loop. It didn’t happen right away. It took part way through my cold for it to really affect the jpouch. Yea it did for sure affect it and took a little while to get back but I’m about there. [ more ]
EnterinI'm trying to understand the common cold too. It looks like it might be affecting the j pouch. [ more ]
DerrickNot completely where I was before but definitely leaps and bounds from where I was even a week and a half ago. Definitely threw things through a loop. I think it triggered mild pouchitis also so I was given a script of cipro and that helped my cramping and bloating I was having. [ more ]
Sara MarieThank you. Good information. Right now I'm going down an autoimmune disease research path. I wish the medical system had come to a conclusion about whether UC was AI or something else. Guess it's not important enough? Or maybe it's sometimes AI and sometimes not? [ more ]
lclassenI've had problems with meds that weren't extended release also. Pristique came out exactly the way it went in (lol). Even fished it out to be certain and it was still a perfectly formed pill! I stay away from any meds that have any coating on them at all. I usually ask the Dr or Pharmacy for meds that are meant to be dissolved in the stomach. I've found that capsules work well for me as they dissolve allowing the medicine to be easily absorbed. [ more ]
New577I don’t know if enteric coated is part of it, but the mybetriq definitely is listed as er. the SloFe description is slow release to avoid GI issues. It worked fine pre colectomy. not so good post colectomy. [ more ]
MikeEJ34Hey Ed! Thanks for the update. Sorry to hear about the biopsy being positive for cancer. My father went through this process and successfully got a prostatectomy at the Mayo Clinic September 2020. You will prevail! We look forward to future updates! God bless, Mike 972-809-3640 MichaelEJohnson4@gmail.com [ more ]
Ed55This is Ed. Going back to my original post, I opted for the transperineal route for the biopsy. However, even with this route, it is necessary to insert an instrument into the rectum/pouch to generate a real time image to merge with the MRI image. So for me, there was still the issue of having to insert an instrument that could be larger than the diameter of my anastomosis. I found a doctor at the Cleveland clinic (Dr. Z. Schwen) who was familiar with this issue and he was able to perform... [ more ]
Sara MarieInternet says: "What are the side effects of Rulide 150 mg? Side effects such as stomach pain, diarrhoea, headache and gas can be experienced while taking Rulide Tablet. These side effects are temporary and resolve on their own, but if it worsens visit a nearby clinic or hospital. May 30, 2023" [ more ]
ytcrockpotNo, I’m just not responding as well as I did to budesonide. Been taking it on and off for a while now. In a couple of weeks they will start me on Entyvio. Praying it will work [ more ]
vanHi. I am curious to know, did you Dr think the Budesonide was responsible for increasing your calprotectin?. [ more ]
New577My GI doc loves this test as it gives an accurate picture of overall GI inflammation. I once hit 1200 during my UC colon days and 700+ post IPAA surgery. My last test was 64. I take canasa daily. please keep us posted as to your meeting with doc as I am curious what can be done besides biologics, which I agree with you I would not like to ever entertain as a treatment. If I had to I would, but as a very very last and only option. [ more ]
vanHi thanks for your reply. I have had one failed attempt at fixing it which failed so apparently the LIFT is the next option. Apparently my internal fistula opening is quite big so I am worried it likely wont be successful as well. Can I ask how long was the recovery?. And how long after can you resume work? [ more ]
KikiI had a LIFT 2 years ago and it was successful! [ more ]
caroThank you Deb C. I'll try them. I need mine now because the hole they made between my anus and my J pouch (inside me) is getting too small. I could go for another dilatation, but the last time they perforated my intestine. So I prefer to use a catheter and be super careful about what I eat (no nuts or raw veggies or fruits or potato skin, or mushrooms etc...) they all tend to get stuck. Thanks again! [ more ]
Deb CTry Medena catheter. I used to have one and am thinking about trying one again. I can't seem to buy one without a prescription. [ more ]
caroThank you very much. I always had the transparent one. I don't know of any stores (in the US or Canada) that sell a 30 French Foley. They sell 15 and it is way too small, are you sure a 30 would be big enough? Would you know of any places? And thank you so much for all the informations! It was a nurse who gave it to me some 10 years ago. I am adding a photo of my old one with a quarter. [ more ]
EnterinThanks everyone for the answers. I am currently researching materials. In state hospitals in Croatia, only Metal-plasty is used, and the same prosthesis is fitted to a 20- or 70-year-old patient. Due to his age, he would need another operation due to the durability of the replacement hip. [ more ]
jan15i had both hips replaced in the oughts, when i then had a j pouch. no problem at all. be careful about infections, even after you are post surgery. i developed septic infection and both needed to be replaced. i downhill skiied for awhile, even kept up rollerblading. as i got older and had shoulders replaced and back problems i scaled back to cross country. my suggestion is to work diligently w your physical therapist and develop strong muscles on both hips and legs, along with maintaining... [ more ]
Kara FredHi Enterin, I had my first hip replacement at age 45 in 2017. I had my second hip replacement in 2021. I considered it a standard replacement. This means my PT, pain management and walking assistance was how most patients are treated (except some geriatric patients) and it went smoothly. After your surgery, you are literally walking same day or the next day. I only stayed 1 night in the hospital for both surgeries. It shouldn’t risk or affect any part of your Jpouch. I have a Kpouch and... [ more ]
PouchomarxDietz at University 100%. He was trained by Dr Remzi and is head of colorectal there. When Remzi left Cleveland for NYC hes told me Dietz is the only doc he would recommend [ more ]
MishelLeeDr. Megan Costedio at University Hospitals in Cleveland is an amazing surgeon. [ more ]
Jfill21I had my pouch surgery at Cleveland Clinic in 2017 with Dr. Hull. I chose her after reading her PubMed articles, lecture videos and reading patient reviews. She’s been at CC a long time. I found her to be extremely patient centric, and I was impressed by how the nurses and staff respect her. [ more ]
tfI recently found out that I have internal bleeding in the small intestines. I have been anemic since uc dx in 98 & jpouch 2013. My ferritin level recently dropped to a 7. The test they did is called small bowel capsule/video capsule endoscopy. I go to a hospital in Philadelphia. The results angioectasisas & lymphangiectascua. Long words for B vessels that are weak an blood burst out. This pill takes hundreds of pics in 8 hrs time. I now am getting iron infusions. I bleed at the... [ more ]
tshirtThank you Scott, I hadn't considered diving deeper with radiology, I will talk to my gastroenterologist and see if he can arrange this. Thank you also Steve. My surgeon has not been very willing to explore any other options but maybe with better scans she can see what is possible. [ more ]
SteveGYes, strictures at the pouch inlet and that fistula you had 7 years ago sound like Crohn's. With all the problems you have, the strong bleeding and only having blended food, I can well understand your surgeon's advice to think about a permanent stoma. You could also have a surgery done to remove the strictured piece of small intestine at the pouch inlet, but that would involve having a temporary stoma again for some time. And it is not unlikely that similar problems evolve again. Not an easy... [ more ]
jan15i had chronic pouchitis with the j-pouch and was on a variety of antibiotics for the better part of 15 years. have tremendous compassion for what you are going through. i did not opt for a revision as was advised that the pouchitis would more than likely return. towards the end i became resistant to antibiotics. got some help by going on the low fodmap diet. if you take this tack, it is best to get help from a dietitian. prior to the fodmap diet i went off all refined sugar, simple carbs and... [ 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 ]
LouisaI find that it is more common for me to have accidents during the night if i take a stronger medication to help me sleep. I also use Gastro Stop of a night to block my bowel so i can have a better sleep at night. [ more ]
janglerI agree with Marvin's Mom, I also use sheets of toilet paper each night and rarely have any trouble. [ more ]
jhillsI second all the above answers and add to this….when everything is working as it should and I don’t stop eating at a certain time at night- this will happen. Usually stop eating 3-4 hours before bedtime. Eating all my calories in an 8-10 hour window and then resting my intestines the remainder of the time is a must for me too. I truly hope you figure out your system. [ more ]
Lorij0411Yes, I am in the states. Washington state. I used a doctor through MultiCare Weight Loss Clinic. His name is Dr. James Sebesta and he is in Tacoma, Wa. [ more ]
Sara MarieI may try the hot water and lemon in the future. That's a nice, cheap, ancient remedy. I have heard it is prescribed for balancing the liver and excessive heat in the body, but not sure what else it does. [ more ]
jhillsI’m an ulcerative colitis patient, Jpouch surgery 23 years ago. Recently I tried something life changing for my digiestive system. No drinking at meal times. I wait 45 mins after eating to drink all liquids. Drinking while eating reduced my stomach acids trying to work. Now my stomach acids can work 100% and my stool out out is thick consistency and I maintain good weight. Also years ago I had to eliminate dairy and gluten because they flare up and make my pouch and intestines bleed. I drink... [ more ]
jhillsI second all the above comments. Adding to this, I had to eliminate all dairy, beef, gluten for 30 days, Very hard!! Because all these foods cause inflammation and irritate intestines. I then added in one thing at a time to see what my system barked at. A high percentage of us bowel people have a diary and or gluten intolerance. I’m living my best life with my jpouch though in the end. Don’t give up trying to figure out your system. [ more ]
CTBarristerLiza, I applaud you for your independence in moving out and living alone. Back in 1992, I was the same age when I had my surgery. I didn't move out immediately, and I am glad I didn't only because I had a few weird complications that sent me to the hospital, which you are unlikely to have (one was a sodium overdose for binging on high sodium foods 30 days after takedown, foolishly thinking it was OK to do so, the other was a blockage from eating too much coupled with post surgical... [ more ]
New577Congrats on your “easier” recovery. It’s good to hear positive stories. best of luck on your next “takedown” surgery. [ more ]
KushamiYes, that sounds right. Watery BMs, a change in colour (slightly green or yellow) and smell, cramps and an achey feverish feeling can indicate pouchitis. You won’t necessarily get pouchitis, it’s just something to be aware of. [ more ]
Indy_DaveLittle update - got cipro n flagyl...been about 5 days and things are going well. Seems i can hold it alot better and the leaking has subsided to the occasional trikle...guessing it was pouchitis afterall.. [ more ]
Indy_DaveThanks! I go see the gi on friday for a checkup..will see if its pouchitis [ more ]
kaywow that is awesome! maybe theres 1 by me that does that. thank u ❤ [ more ]
Sara MariePhooey. My acupuncture place is a community clinic, and has a sliding scale for payments, based on what a person feels they can pay at the time. Treatments are $25-50. I don't know how they stay open. [ more ]
DerrickI just saw this thread. I just got my first cold with a jpouch and it become for active and gassy. Also urgency went up. I’m recovering and tail end of illness but pouch and frequency is not where it was before yet. How long did it take for you guys to get back to where you were? [ more ]
Joe RosatiMark - I do notice I like to lay around and nap more when I have a cold or are sick. [ 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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