J-Pouch ForumsK-Pouch Korner
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J-Pouch ForumsGeneral Discussion
I had Dr Dozois and he was great [ more ]
Thank you very much for the information. Alison [ more ]
There are two surgeons at Mayo who deal with pouches: Dr. Sherief Shawki (507-284-9079) and Dr. Eric Dozois (507) 284-2511). Dr. Shawki received his pouch training at Cleveland Clinic and transferred to Mayo about a year ago. He is doing K pouch surgery. Dr. Dozois does J pouch surgery and repairs to K pouches. I have had 3 surgeries, 2 consultations and participated in a Clinical study at Mayo and have a high opinion of it. Please send me a PM if you would like more information. Bill [ more ]
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J-Pouch ForumsGeneral Discussion
A brilliant natural medicine to avoid blocks, Pouchitis, multiple restroom visits, etc for people with J-Pouch
I have found recently that organic psyllium powder, about a teaspoon (with water, of course) before a meal, helps do the same thing as you describe with the Okra; fewer movements, more time to digest food, reduced or eliminated burning. It's not metamucil. It's just psyllium by itself. No sugar or other weird stuff added. That makes sense that psyllium and okra would work the same way because they're both soluble fibers. Plain cooked oats can also be a nice firmer of the stools, but the... [ more ]
Ok, hope you get well soon. Take care. [ more ]
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J-Pouch ForumsGeneral Discussion
Straining for me doesn't work as it seems to close things off. In order to get things moving, I apply a bit of pressure with a closed hand on my abdomen directly over the pouch area and it works really well in getting things moving and I have no trouble emptying. I also have crohn's and a somewhat shrunken pouch as a result of the associated inflammation and a stricture needing annual dilation. Unexpelled gas is also a problem for me when trying to empty and I try to get rid of gas... [ more ]
Those kinds of symptoms which you have described I have had in the past with poorly controlled pouchitis. You haven't elaborated on what meds you are on and whether they include antibiotics which, potentially, could be losing their efficacy. I have actually developed symptoms of difficult evacuation when trying to go cold Turkey off antibiotics in the past. I recently tried going off Vancomycin and experienced something similar albeit not as pronounced as in the past or as you have... [ more ]
Difficulty emptying can drive us nuts - I'm sorry you're going through this. Is it possible that your stool is too solid? That would usually be pretty easy to fix. Some of the possible causes (e.g. stricture, prolapse, pelvic floor dysfunction, floppy pouch) really would need the assistance of your doctor, and no assortment of supplements, diets, and natural remedies will help much. Has your doctor offered an opinion? In the meantime straining to empty can make some things (like prolapse)... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi - people can do lots of stuff with a bag. I fly often and see how hard you guys work - your job is indeed very physical. I found I returned to full strength after about 3 months. I was moving my college kid into her dorm and lifting heavy things just fine. I would think 3 months off. Have a discussion with you surgeon. Good luck [ more ]
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Hiya, I’m just asking how you got on?? I had ileostomy surgery in November and I’ve always wanted to be a flight attendant but just not sure about it now… [ more ]
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J-Pouch ForumsGeneral Discussion
My surgeon thought it was a good idea to leave my rectum at 5 cm and twist the jpouch. I had a redo and meanwhile I had 2 stomas again. I wasn't happy with the bag so I opted for the redo [ more ]
Everyone's anal canal produces mucus. It's normal. A normal person doesn't notice it. I didn't when I had my colon. It helps when you go to the bathroom with evacuation of feces. Like a lube. Natural lube As for me. No I don't irrigate it. It's so slight. I don't want to be gross but I digitally clean it with soap and water in the shower. My anal canal is no longer than an inch. Inch and a half. No big deal.. [ more ]
I’m starting to have conversations about going back to the ostomy and whether a 2 step process (leave the pouch in place) or just getting it all done at once would be better. Complete excision is another major surgery that I don’t look forward to but I would never try another pouch after all the issues with this one so maybe should bite the bullet when the time comes What do mean by cleaning it out? Do you need to irrigate the mucus out? Thank you for entertaining my questions. There is no... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the reply. When I had the ulcer recently I did have other symptoms stomach pain like with UC , and strangely aching legs. I also had my first ever bout of pouchitis at the time. Hope your treatment works [ more ]
Hi Jacqueline I have recently had 3 tiny ulcers found the above the pouch in the ileum, i’m not sure if that’s the terminal ileum or not. Strangely though there is no inflammation around them or signs of Crohn’s disease. They have been causing me to be anemic for years as they bleed, so i’m having several sessions of a laser type coagulation that burns them closed, which should hopefully heal them indefinitely. My surgeon says that the ulcers can just happen like in people with Colon’s, he... [ more ]
Jackie - as to the first paragraph above: No- I do not think that, at all. As I posted above, the science on this has changed, and either you move forward with the 21st century scientific thinking, or stay with what is now outdated thinking as I posted above. There are some very current studies and seminars on this which have been posted elsewhere on the board and my GI, who chooses to keep himself updated on current scientific thinking, has also mentioned said studies. As far as the second... [ more ]
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J-Pouch ForumsGeneral Discussion
Those capsules contain hardly anything but salt. If you add some salt to your meals that's a lot cheaper. I currently take 0.5 g of salt with breakfast. When I had more BMs I took 1 g to 3 g a day. I use an empty half of a meds capsule to measure such small amounts, that's about 0.5 to 1 g depending on the capsule size. [ more ]
Good tip- I find that Liquid IV also does a good job of pulling me out of the dehydration spiral. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you both. I don’t think I’d go for a continent ileostomy or a pouch revision. I wouldn’t want something that needs to be cathed and has the potential for some of the same issue as the j pouch. Same thing with revision. I’m done. This pouch has been nothing but misery and I can’t imagine going through multiple surgeries again just to be in the same position, or worse. Years of life have already been lost. I’ve been told my anatomy can be problematic for a pouch so I am without any... [ more ]
I respect Dr Shen but I also think that in his gastroenterology/ endoscopic subspecialty practice he sees all the most complicated cases referred from other centers and multiple surgeons. Perhaps consult with his Columbia colleague Dr. Kiran for a second surgical opinion? He performs continent ileostomy procedures such as BillV mentioned and could explain what risk factors exist, if any, that might complicate a 2nd end ileostomy for you as well as other surgical options. (I personally will... [ more ]
A continent ileostomy, like the K pouch, is an option for those whose J pouch needs to be removed. Many people, me included, have opted to get a continent pouch and have had favorable results. I am very I made that choice. This procedure is not suitable for everyone and there are complications that may develop, most of which can be corrected by surgery or non-surgical treatments. I recommend that anyone who might be interested in this procedure consult with an experienced surgeon who does them. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I stopped taking phsyllium and have noticed more watery stools but less gas and bms.I find taking a supplement every day seems to make it less effective ,like peppermint tea seems to work better when not taken for a while. [ more ]
I didn't take any today and feel alot better.I prefer looser stool.and no gas pains or noises.and less trips to the toilet.do most people just take loperamide? [ more ]
I am a big fan of psyllium husk vs metamucil. I find it works better for me and hasn't flavour/added sugar/fake sugar. I use a heaping teaspoon with a couple of ounces of water four times a day (although I started at two and then three times per day). It doesn't mix with the water very well but goes down just fine as far as I'm concerned. I often refer to it as my dose of sawdust. [ more ]
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J-Pouch ForumsGeneral Discussion
A digital exam would show if your anal canal is tighter than a finger. If so, it needs to be dilated. For comparison, some time ago I had a device for pelvic floor training where a probe head had to be inserted with a diameter of about 20 mm. That was still possible for me, sometimes it hurt a little. You need to be careful that your stool does not get too bulky. Either drink a lot together with the psyllium husk or if that's not enough try to take a little portion of a laxative (too much... [ more ]
Thank you. Sorry for all the questions. I am so new to this all! Will they do a scope? I’m only scheduled for a surgery follow up visit with the nurse practitioner. If they will do a DRE would that show it? I just obviously really want to get my pouch working as well as possible before I have to go back to work which is very soon! I can’t go back if I’m spending 30 minutes in the bathroom several times a day 😔 [ more ]
They will know you are strictured if they have trouble getting the flexible sigmoidoscope in. If they struggle to get it through, you need to get dilated. That's my GI's very simple test and it makes a lot of sense to me. This is true if it's at the outlet or the inlet. [ more ]
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J-Pouch ForumsMen's Health
I cannot be 100% sure as I did not ask that question. I’m always looking for natural alternatives to the meds. Perhaps it’s side effects that the meds could cause. I will remember to ask him on my follow up appointment. And I will report back. Al [ more ]
Hello, Can you tell us why he prefers a supplement over avodart or proscar for bph. i have been on avodart for over a year and it has shrunk my prostate and reduced my PSA in half. Just curious so I can mention it to my URO when I see him. I don’t want to take avodart forever [ more ]
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J-Pouch ForumsGeneral Discussion
I was told from the start not to take delayed release meds for this reason. I suggest not unless you have no other option or your transit time is long for a poucher. Good luck [ more ]
I think you need to distinguish between absorption issues and transit time issues. The approximate transit time is around 3.5 hours. If the delayed release med is designed for 8 hours delayed release it's not an absorption issue, but based on the basic math, a transit time issue. This will be an issue with any delayed release medication if release of medication is delayed for more than 3.5 hours. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
OMG, I couldn't eat that at all right now so that's the goal - being able to eat something like this! [ more ]
AMB- I am not sure. They are now running an online ordering service. Which is frozen uncooked pies, 3 for like $95. Check here or their website: https://www.goldbelly.com/sallys-apizza Those pizzerias (Sally's, Pepe's, Modern) are all a 10 minute drive from where I live, so I eat there somewhat regularly. But I can eat New Haven pizza and almost anything else. My birthday dinner was Saturday night and it was celebrated at September in Bangkok, probably the best Thai restaurant in New Haven,... [ more ]
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J-Pouch ForumsGeneral Discussion
I live near Grand Rapids on the Western side of the state. I see Benny Kieff. Unfortunately, I heard he isn't taking new patients, but I have friends who see other doctors in this group that are equally good. It's through Spectrum Health - Gastroenterology. Praying you find a great doctor! [ more ]
Hi Leanne, I went to UofM while I lived in Michigan and saw Dr. Del Valle. I was very happy with my care there. It’s a hike from where you are but might be worth it if you only have to see home once or twice a year. Also I hope you enjoy your new home- that is a truly beautiful part of the state! I’ll be up your way on vacation later this summer [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bill, it sounds like you've really had a tough time with 12 BMs a day for the past nine years. That's so many! I don't think 80% of Crohns patients get an anal abscess. I've got an s-pouch (same as j, just different shape) and Crohns and things have gone well until recently. I'm doing okay I just have to get a stricture sorted out but this is not surprising since I've had my pouch for 28 years. Let us know what the surgeon finds. Perhaps it is a stricture that can be expanded that's causing... [ more ]
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J-Pouch ForumsMen's Health
TPC/IPAA is shorthand for total procto colectomy/ileo pouch anal anastomosis. I agree with you, the less invasive the better, as long as you can achieve accurate results. i assume you are on active surveillance and are following up as per your AS protocol. I have lots more questions, so if you want me to private message you I will. [ more ]
Hello Eric and thank you so much for your thoughts. My options are with two different physicians at two different hospitals. One in CT, the other in MA. Both physicians are non-committal. The location that does the stepper technique are not authorized to do the free hand. The doctor that would use the stepper technique has done this on men with a J-Pouch, he just hasn't done biopsy fusions on one with a J-Pouch. The free hand physician has done about 6. The upside is that both procedures... [ more ]
Hello, I went ahead and researched the two methods. The literature seems to suggest that freehand will give similar outcomes to the stepped method. if it was me, and btw I have a bouncing PSA that runs high, I would lean towards the freehand. I have had over the last ten years, two trus biopsies prior to TPC/IPAA surgery and can’t and won’t have future similar traditional biopsies. please keep us up to date as this is a very important topic for some of us. btw, does your care team have a... [ more ]
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J-Pouch ForumsGeneral Discussion
The thing is- with your more liquid stool, a quick rinse does the job just as effectively. I get scopes and stricture stretch every 6 months, and never have to prep with Miralex. But you do you 😀. You can have it a lot easier tho. [ more ]
I've used Miralax in Gatorade twice as ordered by Dr. Shen. It's an easy prep and very effective. I'm of a mind that if I'm in need of a scope, the endoscopist should have as clean view as possible of all the mucosa to determine where to take biopsies, identify lesions, strictures, etc. I don't look forward to it - not a fan of Gatorade - but I don't question the need for the prep. [ more ]
There’s very little need for that prep. I’d double check with them. Often I find the staff issue those orders without realizing that your prep doesn’t need to be as intensive as a colonoscopy. Typically you should only need clear liquids for a half day or so and maybe an enema to flush out the lingering stuff. [ more ]
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J-Pouch ForumsPouchitis
Thank you for your reply-I will look into this [ more ]
@EAC When gas is the major symptom then it’s worth suspecting SIBO. A longish course of antibiotics (doxycycline or rifaximin) seems to be commonly used to treat it - doxycycline for a couple of months worked for me. There is a breath test for SIBO, but my doctor went by symptoms alone. [ more ]
I have had a j pouch for approx 39 years-I had some problems with pouchitis, etc-a few years ago I went to Cleveland Clinic and saw Dr Bo Shen-who has since left there and went to NYC-I had a variety of testing done and it was shown that my pouch was stretched out and I was prescribed pelvic floor therapy and to stop taking NSAIDS for joint pain-Dr Shen felt like the NSAIDS damaged my pouch.The pelvic floor therapy was helpful-o still use it today.I have been having large amounts of gas that... [ more ]
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J-Pouch ForumsGeneral Discussion
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Your coconut cream and apples idea sounds tasty. I eat a super high fiber diet already! Lots of beans and veggies and brown rice! Everything moves through me too fast and irritates the gut. I'm adding psyllium to slow things down. It seems to be helping. This is definitely not a constipation issue. [ more ]
High fiber,bowel movements = baked beans,diced apple in coconut cream and savanguion blanc sauce,psyllium husk,coffee,peppermint tea. [ more ]
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J-Pouch ForumsGeneral Discussion
Oh edibles is a great idea, thanks for that idea. Yeah not only is the blockage pain awful, then the loss of appetite and bloated soreness for days afterwards is bad too. I don’t think there’s much to do about it unfortunately, except lay around in pain, anxious about timing for getting to the hospital. My hospital ride is roughly 45 mins so it’s long enough that I’m always trying to judge the “escalation”. The Percocet does help some by slowing down gut motility along with the pain relief. [ more ]
Thank you for those ideas!! I ended up using Diazepam (Valium) that I had from a time I threw my back out. I figured if it relaxed my back muscles it would also relax my intestines. Then you forget how sore you are for days afterwards I could barely stand up straight because I still had so much residual pain even after everything passed through. last night I took a THC gummy (I live in a state where I have a medical license ) which helped me relax enough and fell asleep and today I feel so... [ more ]
@Chook2 - in what way? @Shellie - blockages suck so much. I’d love to know too. I’ve had many over the past 30 years of pouching. Several have sent me to the hospital when the pain gets too much. For at home I take Percocet and try to ride it out. I’ll sip on water but not much else. I find that the pain seems less if I sit up, leaned back in a chair or couch rather than laying flat. Alternatively it seems laying on my stomach with my torso propped up, like reading a book in bed, seems to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sara, I have spoken to my doctor, and they have done full panel bloodwork, checked my thyroid and that's it. I cannot actually have anymore CT Scans due to the fact that I have had over a hundred of them on top of about a thousand x-rays and they are worried now about radiation. They have not tested my endocrine system ever. Should I ask my GI guy about that? Right now, it's eating that hurts. Since my infusion on Tuesday I haven't had any pooping problems. Those resolved within mere hours... [ more ]
Seirla, That is a long list and you have definitely been through many trials. I am sorry none of these was helpful enough. You have some good data. Have you talked to a doctor and ruled out other things that might be causing your pain? Have they done a CT scan? Have they tested the functioning of your endocrine system? I'm sure there is more they could check out but I'm not a doctor. Sara [ more ]
I appreciate all of the insight and suggestions. As a list of things I have tried, it's a long one: Typical Exercise: I have tried doing workouts that my body didn't like on a daily basis. Pushups left my shoulders in so much pain as well as leaving them crunchy Keto: Left me in the bathroom all the time because removing carbs turned my poop into water Metformin: was given to help me lose weight, but it turned out I'm Type 2 Diabetic and my doctor can't seem to keep my prescription... [ more ]
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J-Pouch ForumsGeneral Discussion
My surgeon told me not to use the metamucil in the first two weeks post-op, because it "could make things worse." Then he had me start 1tsp/day starting at two weeks post-op. He told me that it could be weeks before my body got used to the psyllium husk. I have an active intestine like you, De. I noticed a difference immediately. My next poops afterwards are more gelled. He warned about not stopping it just because of some uncomfortable bloating. But I don't notice the bloating as much as I... [ more ]
A week is likely to be plenty of time to dee if psyllium (Metamucil) is working for you at all. It might take longer to find the ideal dose/frequency. [ more ]
I have been on 8 immodium per day, 2 with each meal and before bed, for 15 years. I have about 6 BMs per day. Pouchitis maybe 1 per year. Taking Entyvio also for 3+ years. I hate to think of the Entyvio the rest of my life but have been told if you stop, the UC or Cronhs gets worse. Any info out there for me ? I would like to try the Metamusil. Should my trial period be a week or more for my body to get used to it or ? Any info you can give me would be appreciated. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Hi Betsy, I had a fistula repair after 18 months with a seton and it was successful. My surgeon did a LIFT (Ligation of intersphincteric fistual tract) about ten years ago and ....knock on wood...it hasn't come back!!! [ more ]
Hi Betsy, I am considering a surgical repair (vaginally) and was told due to IBD (my J-pouch is 16 years old) there is only a 60% chance of success. Did your symptoms worsen after the failed surgery? I'm handling my RVF but am concerned that it will become more problematic as I age. Of course, I really don't want to make things worse. Any advice is appreciated. Thank you. [ more ]
unfortunately not, fistulas are tough [ more ]
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J-Pouch ForumsGeneral Discussion
Tailbone pain can be a symptom of a sinus tract from the pouch (essentially a blind fistula) and/or abscess. I’ve had a persistent sinus tract since takedown (2 partial sinusotomies and counting) and now have sacral osteomyelitis (bone infection) on IV antibiotics. The coccygeal and sacral pain is a persistent ache and my tailbone is tender when pressed on. Sitting can also be uncomfortable. It could be run of the mill tailbone pain but I would have it checked out. [ more ]
I had tail bone pain and went to my GP and he ran an cray but did not investigate further. I ended up with a ruptured abscess, peritonitis and sepsis. They were going to airlift me to Seattle but said they didn't think i was going to make it so i had to undergo emergency life having surgery. I was in the hospital for 20 days. They were going to excise my j-pouch but i did not let them. I ended up with a temporary ileostomy. Just had a take down surgery last December. Two years if my life i... [ more ]
Pain is the same, bleeding still there not a lot. Pain when I go. Thought maybe hemeroid but prep H not changing anything. Trying to get a GI appt, as a new patient and with my new HMO insurance but can’t get in until the end of February. [ more ]
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J-Pouch ForumsGeneral Discussion
I use warm water enemas daily, approved by GI Bo Shen and my CRS. For those with difficult to empty pouches (for any number of reasons), Shen recommends regular “irrigation”, which can be more involved than enemas (large, long tube with holes at the top to drain the pouch). This would never work for me as output is too thick and seems like a pain. I use an enema most mornings and sometimes after work. My CRS has patients that use enemas to empty every time. They haven’t expressed any concern... [ more ]
It's not really that I have a problem emptying. If I eat right and follow my routine I'm usually just fine. If I over eat that's when I tend to get jambed up. Usually I can do a good fast and that clears everything all up but a enema is a much faster option. [ more ]
I don't honestly know. I'd be concerned about doing it all the time, particularly if it meant I was failing to identify and attend to a problem. I suspect it does no harm if limited to occasional enemas. OTOH, if you can empty an enema just fine maybe the stool is simply too thick. [ more ]
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J-Pouch ForumsPouchitis
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Glad to hear that Kate! Thanks for the reply. I’ve read a few recent studies regarding HBOT and fistulas from Crohn’s and the data looks positive. Will definitely look into this further [ more ]
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J-Pouch ForumsGeneral Discussion
Yes this is an interesting bit of reading! It mentions fistulas but say that they are discussed in Chapter 13. You don't happen to have Chapter 13 do you?? [ more ]
Oh good, I’m glad it was useful. I have megapouch (last chapter) and this is the only detailed information I’ve found on it anywhere in years of searching. (It affects less than 1% of j-pouchers.) [ more ]
K, thank you. this is a very good resource. I do suffer from very mild cuffitis and found the information to be very valuable. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks everyone. I typed this reply and then ugh, it didn’t save. So this will be a less detailed on. I haven’t tried roaring meds but haven’t only been on Flagyl for a year (since June) so idk if that would be an issue. I don’t think my doc cares what I’m on so I’m sure he’d be open to mixing things up with Cirpro for example. Never had him mention Rifaximin but have heard of it on this site before. Maybe I’ll mention that as well. I’m on Stelera for my arthritis so I figure that might help... [ more ]
The antibiotics mystery. It is enduring. More or a combination may help with the sudden change. I was happily-almost-normal, with my floppy pouch overgrowth well controlled until Rifaximin ran out, insurance wouldn't refill, Canadian pharmacy will take 4-5 weeks for generic shipped from India, and NP hesitated to write Cipro as my Rifaximin was winding down which would have allowed me a few days overlap. I gave up and called my local GI. In the past, hard stops and starts of antibiotic... [ more ]
I am merely suggesting to Bubba that any reliance he is placing on probiotics being an effective treatment for pouchitis, which is suggested by his post, is misplaced. His best bet to stop the accidents is to increase dosages of antibiotics, rotate antibiotics or both. Short term, I would also use Pepto Bismol for 3 or 4 consecutive nights at bedtime (and at last 2 hours after last antibiotics dosage) and see if that halts the accidents. It has for me in the past. But then you have to come... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Some J-pouchers do use opiates like codeine to slow things down. IMO it’s best to try to optimize Imodium or Lomotil before doing that. If one of those can give you satisfactory results that’s a simpler and lower risk path. [ more ]
My pouchoscopy went well. Dr said it’s one of the healthiest pouches she has seen. No pouchitis. No inflammation. I’m currently going thru pelvic pt. I recently had a prostate biopsy. They gave me Tylenol with codeine. I went 12-14 hrs without bm. Is this something jpouchers take to slow things down? If so, I would assume my GI can prescribe it. I get my results from biopsy in a couple days. I really need it to be good news. [ more ]
Hang in there. I spent many months contemplating an eventual reversal. But things did get better. Though not perfect, I continue to improve. You will too. [ more ]
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J-Pouch ForumsFAP Forum
I carry wipes in my purse along with Calmoseptine Ointment (if needed). I use wipes every time I go. The ointment is a paste and it's wonderful. Even good on irritated hemorrhoids. Been doing this for years and will continue. [ more ]
I use A&D plus a hydrocortisone cream. I have a bidet and couldn't live without it. I think it's a life long use. [ more ]
Unfortunately I can’t install a bidet at work since I work at a university. But I’ll just carry a purse to and from the bathroom I guess. Just wondering if it’s normal. I’m using my daughters Triple Paste cream (diaper rash) and it works like a dream. [ more ]
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J-Pouch ForumsGeneral Discussion
I can be bothered so I just mix up a large teaspoon in OJ or Apple Juice every morning and that gets me through 24 hours. Great stuff. [ more ]
The Meta Mucil Fiber Thins have made my life so much better. They thicken my stool. I have two with my coffee in the morning. Then two after my evening meal. Or during the day when I think I need to thicken things up a bit. I always carry some with me when I am away from home. I recommend them highly. Three different flavors. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hi, yes I will keep you updated! I have started using the Natren brand probiotics and Wild oil of oregano and will daily for 3 months to give it a solid chance. I got the book Listen to your Gut by Jini Patel Thompson. It's quite informative. I will update in a few months. Wishing for healing and miracles for good quality of life to everyone. [ more ]
Hi Juliana. Please let us know how this protocol goes for you. I took a hopeful look at it as well but I think it may not be appropriate for me. My fistula was caused by a 'mishap' in my jpouch surgery and not inflammation. I'm told it would require a 'structural' repair. Still, if it has an effect on thickening the stool, it may still help me. I'm curious to know how it progresses for you. It is good to have something to be positive about. Good luck to you. [ more ]
Hi Lori, Thank you so much for this reply! It's so nice to hear positive, empowering messages. I have contacted Jini Patel through her website and hope to get started asap. Thank you so much for sharing and I will be in touch via email. [ more ]
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J-Pouch ForumsHelp! Need advice now!
That is great advice. Thanks so much. I have a call with my GI this week to give something a shot. I will make those suggestions. Zofran seems like a smart thing to have around. [ more ]
Tindamax I have used under generic name Tinidazole. It's in the same antibiotic family as flagyl. You have to keep in mind the families of antibiotics because if one sickens you a cousin antibiotic might. Flagyl and tindamax are cousins in the nitroimidizole family much like cipro and levacquin are in the floraquilone family. So use the relative antibiotics at your own risk. At a minimum, as Scott suggested, have Zofran at the ready when you experiment with cousin antibiotics of ones that... [ more ]
Good advice Scott. I will keep on trying and try the Xifaxin and or Tindamax. Biological meds are definitely on the board also. [ more ]
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J-Pouch ForumsGeneral Discussion
I stopped the medication. Was up most nights in the bathroom. Feel better wo it. Went back on Pepto. Eating lots of rice, sourdough bread, eggs, potatoes & lean meat. Next move, Dietitian. I’m going to eat the correct food to heal myself! Tired of drugs! [ more ]
The prescription I have contains packets with 4gm of powder to be mixed with a liquid like orange juice. [ more ]
I take the pills. [ more ]
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J-Pouch ForumsGeneral Discussion
To clarify, I’m talking about only taking 1 per day. So, going from 0 a day to 1. Unfortunately, I haven’t been able to find a knowledgeable GI under my insurance plan. The ones I’ve seen under this plan had never had a patient with a j pouch before so I don’t trust any of their advice. [ more ]
Oh, that's correct, CT. 8 imodium/day is like the threshold that the gi doctors give for "don't go above this limit." (Adult limit from my gi docs and several places that I have read online). For fecal impaction, everyone is different. So you want to start small and make sure you can tolerate each additional pill for a few days before moving up (and only move up if you have to). You don't want to get impacted. My statement about using 8 was just to say: "I'm someone who is using 8/day... [ more ]
When you say 8 a day is "safe", you mean for dependency purposes, and not fecal impaction purposes, correct? [ more ]
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J-Pouch ForumsGeneral Discussion
Hi there! I also had an unsatisfactory experience with the first GI clinic I went to. Then I was referred to the GI clinic at KU, which my experience there was wonderful. Dr. Bansal did my scopes and Dr. Ashcraft was my surgeon who did my JPouch. hope this helps! [ more ]
@lholdem hi, I'm in KC. Are you on the Missouri side? If so then try Saint Lukes Hospital. There is a clinic called Mid-America Gastro. They are amazing! Dr. Bownik is awesome! [ more ]
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J-Pouch ForumsGeneral Discussion
I love my Metamucil fiber thins every morning. Best part of my day. [ more ]
I too had good success with the Metamucil wafers [ more ]
I eat and enjoy 2 Metamucil wafers mid morning every day. They come in different flavors. They have helped me tremendously and they don’t taste bad. I don’t experience and gas or bloating. Good luck to you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
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Thanks for those responses. I asked my hospital care team about these points, because I have read these on these forums that I've been pouring over for months (starting to train my pouch and using fiber instead of introducing yet another med, lomotil). They told me not to train my pouch this early because it could back up to the suture line which is still healing (seems like it'd have to be a lot of poop, but I'm not the expert here). And for fiber, I was told not to use it this early... [ more ]
Everyone is different when it comes to this for sure. I tracked my movements for the first couple of weeks and averaged teens for the first 2 weeks and then began to see a downward trend in frequency. I stopped tracking once I got under 8 a day and now I usually am around 5 in a 24 hour span. 6 months out on the 21st. I would keep food intake to simple/consistent items. This will help the pouch know what to expect and then you can introduce new foods over time. [ more ]
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J-Pouch ForumsGeneral Discussion
Glad to hear you got better. I think it’s going to be pretty tough for anyone to figure that out for you. [ more ]
After about 3 days of horrible back pain and worse than usual bowel movements, everything seems to return to normal. This pretty much verifies the fact that whatever it is that is happening with my body - it is a systematic issue, not a mechanical one... I went from feeling like I couldn't do anything without horrible aching pain to my usual everyday way of life! Can anyone help me figure out what Judy happened with my body? Or am I a headcase??!! [ more ]
I agree with Scott, at least from my own experience a blockage or partial blockage feels very different from what you’re describing. In fact the issue is usually that gas is NOT being passed. For me blockages come with awful abdominal pain, moderate low back pain, little to no bowel movement that’s only liquid if at all, nausea, and bloated abdomen. What you’re describing sounds more like an irritated intestine of some kind, possibly with the irritation/inflammation driving back pain, which... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Not me I go 6 times a day mostly sleep through the night [ more ]
My surgeon told me that some of his patients do get to 3-4x day. I'm not there yet but hope springs external. I'm averaging 6, including late evening and once at night.I don't think 3-4x is a problem, just a happy pouch and maybe a bit of luck. [ more ]
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Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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