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J-Pouch ForumsGeneral Discussion
Admitted and waiting for MRI
J Jaypea
Jaypea Thanks. I was sent home Sunday afternoon. Removing the packing was unbelievably painful. I ended up sitting on the Sitz bath with nurses giving me dilaudid IM. Oh Lord. It finally came out 3 hours later during another sitz bath. Whew. I am home now and very sore and quite nauseated. Tylenol #3 makes me feel quite sick so I'll just stick to Advil. My pouch is working well and my neighbour is bringing soup and muffins. Life is getting better. The surgeon said that the fistula and abscess had... [ more ]
tulsamom Hang in there! We're rooting for ya! [ more ]
Jaypea I finally went to the OR last night about 5:00 pm where they did an I&D of an abscess. Waking up from the anaesthesia was a nightmare of shivering and pain. However, nice warm blankets, a comforting nurse and a whack load of fentanyl and dilaudid fixed most of my problems. I have packing in my bottom end and am waiting for the surgeon to come in to tell me exactly what they found. Hoping I can go home after I have a poop, just to make sure everything is working down there. Being NPO for... [ more ]
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J-Pouch ForumsGeneral Discussion
GI recommendations in Boston? First visit to GI doc in almost 20 years...
C Camille
Camille Thanks so much for sharing your thoughts! Sounds like a strong recommendation. :-) Yeah, I guess S-pouches really fell out of fashion, huh? [ more ]
JLH i think very highly of dr. joshua korzenik, who is head of the crohns and colitis clinic at brigham and women. he is highly respected by other docs, very considerate, puts the patient first. can't speak to the pregnancy issue, but he knows everybody and would refer you to another doc if he thought that was a better option for you. good luck and keep us posted. not many S pouchers out there, as far as i know. i'm a K. janet [ more ]
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J-Pouch ForumsHelp! Need advice now!
bright red blood!
S saz
PATRIZIA Dear Jan and Scott, thank you for your replay and I think I know the cause of my bleeding now. I had been given a medicine to treat the swollen hemorroids to be taken in a high dosage for 4 days, then reduced dosage for 3 days and then 2 pill till symptoms disappear but when I had quite a bit of bleeding and some urgency at night as well I checked the medicine leaflet and have seen that one of the side effects is inflammation of the colon!! I suppose some doctors are not aware of the fact we... [ more ]
Jan Dollar Symptomwise, if you had cuffitis (which does also cause rectal bleeding), you would be having pouchitis symptoms, such as increased frequency and urgency, like UC. Jan [ more ]
Scott F Both cuffitis and hemorrhoids have a tendency to bleed. Cuffitis is inflamed tissue (like UC) in the short "cuff" of colon (specifically the rectum) left intact in most J-pouch surgery. Hemorrhoids are swollen veins in or near the anus. It's not hard to tell them apart on physical exam, assuming a knowledgeable doctor. If they've never heard of cuffitis then you need a different doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
Back to permanent Ileostomy after pouch
CM chris mitch
TE Marie I tried everything to save my j-pouch but my GI at the Mayo Clinic scheduled an appointment with a wonderful surgeon there. We all discussed my future and my not wanting it removed as Bill said above it is a major life decision. She first diverted from my j-pouch to a permanent ileostomy. My j-pouch didn’t settle down so I had it removed 7 months later. I am glad I made the decision in 2 steps as I found out the permanent ileostomy was 100% better than my temp one was. I am glad I had it... [ more ]
aka KNKLHEAD I have had two pouches, but some length taken from the small intestine each time. I had a pouch redo from Dr. Remzi, and I'm doing well. I weighed as little as 160 when I was in between surgeries, but now at 190, feeling well. I hope that helps! [ more ]
BillV Chris, my initial thoughts are to do whatever you can to save your j pouch. This might entail having a consultation with a doctor who has lots of experience in dealing with pouch problems. Once your j pouch is removed and your bottom sewn shut, there is no going back. If you would list the problems you are having, others on this forum could offer suggestions. In my case, recurrent high grade dysplasia in the anal cuff and a malignant polyp made removal of my j pouch necessary. I strongly did... [ more ]
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J-Pouch ForumsPouchitis
Food with pouchitis?
Oozie55Oozie55
Crazy1 Off, well on Topic. CT, I seen in your Signature, you battled Pouchitis in 1995 but still have the j pouch as of 2015. If I may ask, how long did you have the pouchitis for, and did you have any more reoccurances? [ more ]
mary beth Thanks Kara. Gotcha, I have read a little about Kpouch. I hope you get some relief soon! [ more ]
Kara Fred Thank you Mary Beth for your support. Janet & I have Kpouches. In a very raw explanation, it requires inserting a tube into to our stoma to empty stool & irrigate to help remove stool. It requires using a syringe to squeeze water through the tube and empty/rinse out our pouch. I also believe the more I 'cleanse' the pouch, the better. My Jpouch failed 5 years ago so I was stuck with a 'bag'. I had more issues, hated the bag & found my last resort to be the Kpouch. I am much... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch- How many BMs a day is average?/ Career advice?
JenBJenB
Former Member Thanks Jen, yeah I wish there was a way for us all to escape this miserable dilemma. [ more ]
JenB Thanks again, CTB23! I'll look it up. sorry, Scott. I know. It's very frustrating. You're not alone. Hang in there. JenB [ more ]
CTB23 Hello Jeane, If you ever want to talk, let me know. Not sure where you are in CT, so if you want to PM me that would be great. It would be nice to share information/experiences with someone close to home and close in age. I have my sister, but don't know anyone in the area that has been through this. Thanks, Chris [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible Stricture/Blockage
Melmed83Melmed83
Winterberry If you are able to drink, even small sips, keep it up and stay hydrated. If you pinch the skin on the back of your hand and it stays wrinkly and is slow to flatten out, this a sign you should be drinking more water or fluids. If it bounces back flat, you are keeping hydrated. Dizziness and trembling weakness is a sign of dehydration too. [ more ]
Melmed83 That's good news. This has been going on for a couple of weeks. I feel like I'm starting to get dehydrated, so I'm going to call GI in the morning. I have been able to pass stuff here and there. I'm still learning my new body... thank you you so much for reaching out! [ more ]
Winterberry Hello, MelMed83, Are you able to eat food or drink liquids now? How is your nausea now? About two weeks ago I had the same symptoms, although my nausea was not as severe as yours. I did have very bad cramps -- the first ever since reversal -- but was able to sip liquids throughout the episode. I did not eat. After a day or so the bad cramps faded and it seemed to sort itself out. I believe it was a blockage. [ more ]
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J-Pouch ForumsGeneral Discussion
Moving to London
MO Mary O
min990 Dr James Lindsey at the Royal London is also fantastic. [ more ]
mandyc Hi, I moved backed to the UK, after living in California and had my jpouch in California. I now having been going to St Marks Hospital for over 14 years and they are absolutely brilliant. You do need to get a referral from your local GP and they do private insurance too. [ more ]
Mary O Thank you very much. This is very helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Iron Deficiency / Severe Anemia
J JoshF
Creampuff I didn't realize I was iron deficient but I knew something was wrong so I went to the doctor for a check up. While my blood was at the lab I got a letter from Palms of Pasadena saying that I might now be suseptible to anemia. A day later I got a call from my doctor saying I needed to get to the hospital immediately. I don't remember exactly what my levels were (this was several years ago) but he said my red blood cells were a quarter of their normal size. I went to the hospital in Munich but... [ more ]
Very-Unique I have had my pouch since 1998 and have been having one, sometimes 2 iron infusions every year since then. [ more ]
JoshF Scott, thanks! that is my concern as well. The doc did the blood transfusion to quickly get my iron levels up while we determine what the next course of action is. I would like to do iron infusions but i'm not sure. The oral iron is definately not sufficient [ more ]
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J-Pouch ForumsGeneral Discussion
My output is just liquid I can't seem to bulk it up
C Clark_00
Creampuff You can find some great recipies for rice water if you google "horchata". I think it's delicious! Especially served ice cold. But it might be good warmed up this time of year as well. Besides rice and rice water, bananas work really well for me, as does butter nut squash and mashed potatos (sweet or regular), and oatmeal - especially if you don't use the recommended amount of water to cook it. You can also sprinkle raw oats on other foods and add them to things like meatloaf, soup, tomato... [ more ]
skn69 Rice. Cook a pot of white rice with twice the normal water and once it is cooked, drink the rice water...you can sweeten it or add cinnamon (it tastes exactly like what it is, pure starch...But that is what will thicken your output). You can eat the rice as well, with olive oil or butter and salt (it will help you to keep hydrated by adding salt to your diet). Burnt toast (yes, just a bit burnt) helps as well...the charcoal helps with the liquid output too. With a liquid output you risk... [ more ]
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J-Pouch ForumsGeneral Discussion
So much gas and stomach churning
N Nork
CTB23 You can also check out Benefiber or Metamucil Clear, my surgeon recommended these because they may cause less gas. I use Benefiber and it seems to be fine. I don't usually feel comfortable going to the bathroom at other people's houses unless it's a family member, because there is usually some gas involved, along with everything else. LOL [ more ]
Nork OK thanks for your replies. I will look into Citrucel. Cheers [ more ]
Megan O When you search Metamucil in this forum you will read that for some people it causes intestinal grief like you are having. Citrucel could be another option. I personally have never gone the fiber supplements route, I just use an Imodium. If fiber seems in order I eat an apple or oatmeal or whatnot [ more ]
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J-Pouch ForumsGeneral Discussion
Oh My Aching Back - Help
Mema 1Mema 1
Mema 1 Not a problem, Sharon, I appreciate your kindness and sensitivity. You know, strange, but I haven't had a back ache for a few days now. I will definitely keep my eye on it though. Thanks again. Judy [ more ]
skn69 Ok, so sorry for the sudden panic, I realized afterward that I may have been a bit 'too much' but the armpit comment scared me...especially since over here, there is a huge campaign going on to sensitize the public to cardiac problems in women and the fact that we do not have the same sort of warning signs as men...(the most recent commercial shows a healthy young woman in her 30's dancing with an older, obese man who is sweating and out of breath while she looks great...the voice over talks... [ more ]
Mema 1 Thanks so much for caring, but I'm pretty sure that it is not my heart. When I said that the pain is up to my armpits, I was trying to give you an example of how far the pain went, not necessarily under my arms. I had an EKG not too long ago and it was fine. I work out 3 days a week, and I have not had any problems losing my breath or getting dizzy. I will definitely let you know what the doctor says when I go to see her. As yet I have not made an appointment, but I will eventually. Thanks... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch and sibo
C coco22
winter wish Hi I have had so many courses back to back for SIBO/pouchitis. I had literally tried every diet SIBO, Fodmap, Paleo, low carb. I was on waiting list for pouch removal and then saw Forks over Knives documentary and a story by Tara Latham who has UC. But since I went essentially vegan (no eggs, dairy, corn, canola oil, meat etc) I have not taken any antibiotics for over a year and a half! I I eat potatoes, quinoa, millet and rice. Lots of fruit and vegetables, and it doesn't cause diarrhoea. [ more ]
JenJen Cody, The Kock Pouch we are referring to is a type of "continent ileostomy." It is frequently called the k-pouch because it is used for similar conditions as the j-pouch. (And I think because no one wants to risk not knowing whether to pronounce it "cock" or "coke" :-) The procedure involves making a pouch from the small intestines to store fecal matter after the colon is removed, like the j, but that is were the similarity in design and function ends. While the j is connected to the rectum... [ more ]
coco22 ThNks everyone- what's a K pouch? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need advise
M Muddygirl
Muddygirl I just do not understand why the GI or GYN doctors not tell me about these other tests when I told them I was still having the issue? Very frustrating. [ more ]
Jan Dollar Hmm. I've probably had nearly a dozen abdominopelvic CTs over the years, and they always are with double contrast. Of course, none recently. Mine were between 1995 and 2006. Jan [ more ]
Muddygirl i have made an appt. with my PC since I am not getting anywhere with GI and GYN doctors. I will mention about the contrast combo scan and MRI to see what she says. Thank you all for your feedback! [ more ]
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J-Pouch ForumsGeneral Discussion
NAUSEA?? no other symptoms
PouchomarxPouchomarx
Pouchomarx the strangest thing, the other day I pooped and noticed small oieces of bright green lettuce in there.. and since then my nausea is almost gone. I cant remember the last time I had lettuce, a few weeks ago at the earliest. but how was it still green? guessing maybe I had a very small blockage??? [ more ]
Pouchomarx well I was hoping to stay away from hospital this year..lol . whats one more test is right but new deductible year and I'm sure it wont be cheap. already thousands in medical debt. I emailed Shen on Thursday asking him if it could be anything else but have not heard from him. I am still eating fine and pooping fine but just with the mild nausea and rumblings.. [ more ]
Jan Dollar Have your docs ruled out upper GI causes? Makes sense to me to get the x-ray out of the way, so you don't have to wonder about a stricture. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I am a slave to the bathroom
CL Chris L
CTB23 Sorry Access Health, CT. [ more ]
CTB23 I agree with Jan. My daughter was able to get Husky Insurance in Connecticut based on income. I believe she did it all on line. I think it was through Access Connecticut. Hope that helps. [ more ]
Jan Dollar You probably will not like my answer. It does not sound like there is anything you can do to improve your situation without seeing a doctor and getting appropriate treatment. Anything other than that is a waste of time and looking for false hopes. All that over the counter stuff is for maintenance, NOT treatment. If you cannot afford health insurance, why not sign up for ACA coverage and assistance? There is still is time, as Obamacare is still in effect. But, you cannot delay. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Prednisone and memory loss
B Bodoni
Jeffsmom I have taken prednisone for decades, on and off. Don't recall any memory loss. No pun intended. I have memory loss for surgery, old age and open heart surgery. I get manic when on prednisone, depressed and eat like there is no tomorrow. Look it up, I'm not sure if that is a known side effect. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgeon recommendation in Seattle, WA area?
M mremp
Laciep My case has been very complicated since I have been diagnosed with Crohn's. He has been very helpful and by my side for the last 3 years, since my very first surgery. So yes, he will be there for you for any follow ups! Since my husband and I decided we were done with having kids before this surgery, we didn't go into detail about having kids post surgery. However that was one of the questions he did ask us at the consultation. If I remember right, his reply was that it is possible, but... [ more ]
mremp Thank you, LACIEP! I really appreciate the recommendation!, it's helpful to hear that this doctor performed all three steps for you (as that's what I would be needing too). Is Dr. Fichera mostly a surgeon that just takes care of the procedure, or has this doctor been available for any follow-up needs that you've had? Also, do you know if Dr Fischera has any experience with women that still want to have children afterwards? Sorry for the extra questions, and thank you so much! [ more ]
Laciep Hi! I live in the Seattle area and had Dr. Fichera perform my 3 step J pouch surgery after much research. He is at UW and is great! [ more ]
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J-Pouch ForumsGeneral Discussion
Need advice
sherlocksherlock
Shardoug Yes, trying the bidet and zinc. Helpful at times, not a cure. Rely on pain killers, codeine mostly for help through the rough hours. will try Zantac, We asked about antacid...Dr. wasn't to keen on it. Its worth a try in my book. Surgery date was Dec. 17, 2015. I am a year out. Its hell..... How do most people handle fried foods? Mostly meat and potato guy. I am afraid of Mexican food or Asian. trying to pin point the culprit. Could it be dairy? raw fruits and vegetables ? Do most people lose... [ more ]
murf You might try Vicks vapo rub..very cooling..no healing qualities but, feels great... [ more ]
Winterberry Hello, Shardoug. What foods are you eating? Can you give an example? I found a small bidet bottle, or the bidet attachment for the toilet, saved my sanity. After washing and drying the area completely, I used zinc oxide (the brand for babies) and found it healed my raw, broken skin within hours. Until the skin is healed and intact, any liquidy stool passing over it will burn terribly. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Jpouch, pregnant, blood
B brie3
jodiloveslife Hello! Congrats on the pregnancy!! How exciting! What I would try is drink more liquids...Like way more than you are drinking now. Sometimes we feel like how in the heck could I drink more water lol I had some issues like this during my pregnancy and drinking more water (I was already drinking a ton) helped a ton. Worth a shot! Take care!! [ more ]
yogijano Hi Brie congrats ! Sounds like it could be pouchitis. Have you ever had pouchitis? I live with chronic pouchitis and have had 2 long flares of pouchitis during my pregnancy so far and I'm 30 weeks at this point. Could also be a hemorrhoid which are common in pregnancy. do you have other symptoms? I would probably reach out to your GI doctor. Good luck ! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage from butt..Embarrassing:(
K KC23
CTB23 Had the same problem, more so between my 1st and 2nd surgeries. Since takedown (5 mos. ago), I have had some fecal leakage but it is getting better. Taking Benefiber once a day, Peptobismol at dinner and 2 Immodium before bed. Minimal if any leakage at night, daytime leakage is only when I really have to go to the bathroom and can't get there right away, like today when I was grocery shopping. I use pads or liners all the time. But on the bright side, I am eating lots of different foods and... [ more ]
Bobish it does dry up gradually over time, so you should see an improvement, but t hen your take down is soon so not sure how dramatic the improvement will be by then. My understanding is its actually a good sign, as the bowel is still coating its lining with healthy bacteria and new cells in the wall lining. You could try bathing your but with warm (warmer the better) water. this encourages drainage and will probably feel a lot better. Thats what i did 2 or 3 times a day and it helped for me [ more ]
Jan Dollar This is not pus, but just mucous formed by your gut. You are not alone, as this is a very common complaint. It may last until your ileostomy take down, but has no bearing on your future continence. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
New organ found
skn69skn69
TE Marie Thanks for the post Sharon. That said I am imaginating what a mess my new organ is in after 8 abdominal surgeries Maybe something new will come out of this that can help people with many other abdominal problems, like IBD, IBS and the awful adhesions some of us get. I think I need a transplant! (Joking). [ more ]
skn69 Less UC a generation ago? Not sure either...maybe 100yrs ago or maybe not. More natural foods and more natural sources are surely healthier for the body in general but that is a sort of utopia for most of us. Even if we buy nothing from a can or a box and make everything from scratch does not mean that we are eating healthier because the supplies that we make them from are industrially grown. All that we can do is hope for better treatments, more research and more curious and compassionate... [ more ]
Jan Dollar Not sure how much less UC there was a generation ago, since it was very underdiagnosed. I would assume that there were a number of people who died from rectal bleeding to have an assumed diagnosis of cancer. So, the data is probably not an accurate representation. I do agree that better treatment options need to be found. Plus, early detection or even prevention is the ideal approach. But, to get there, we need to fully understand the disease itself. Part of the problem is that there is... [ more ]
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J-Pouch ForumsK-Pouch Korner
PU solutions
J JLH
Former Member ❤️
JLH yes, love knowing the exact definition of a commonly used word. indeed some people think certain potpourris do stink. jen--will be curious to know whether your home brew works as good as the commercial. mine only works if i also put in 10 +/- drops of essential oil. the poo- pourri site offers a free--pay for s&h-- 2 oz spray. will do a test once it arrives, but would like to hear your results. thanks, janet [ more ]
JenJen Thanks for the recipe Janet! I will refill the bottle I'm about to finish with my favorite essential oils, glycerin and water and see if I can make a better substitute. Thanks for your etymology lesson, Sharon! Your post made me google "potpourri" and now I know it was just a pot of rotten flowers -- So funny the way some words get appropriated :-) [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone else with a jpouch and gastric dumping syndrome????
B Busybee
jalex It has almost 4years that I have had my pouch. I, too have dumping syndrome. I have 20-25 movements a day. The least I have ever had is 15and I can count them on one hand. I have gone to my surgeon, Drs , tried all kinds of drugs. It seems the second I start to chew I have the urge to go. If I want to go do something, I do not eat and take a dose of Metamucil powder.... That will give me 4hrs or so. Sugar does make things much worse, certain foods are not worth the misery of eating them. The... [ more ]
Busybee Hi Scott and Jeff'smom, Thanks for your replies and thoughts . Taken me a while you get back to you as things have gone a little pear-shaped just recently . I've tried adding the fibre supplement to my daily routine but it seems to speed things up rather than slow them down. I'll give it another try in a few weeks maybe. They always say to come back your things if they don't work the first time . After posting I got to see my gastrointestinal consultant, who said that it's still very early... [ more ]
Jeffsmom Busy bee, I just had Gastric By Pass surgery. My understanding of dumping syndrome at l sat for us, is sugar. If we eat sugar or too much fat, we can get dumping syndrome. Perhaps eliminate any sugar. Also check with your gastroenterologist. [ more ]
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J-Pouch ForumsGeneral Discussion
Antibiotic Refractory Pouchitis or Chron's
M mads101
mads101 Thanks for the replies! I have been on combinations of cipro and flagyl, different dosages, and riafaxin and tinidazole (I am not sure how to spell these things I am sorry). And I will be sure to read about the other pouchitis treatments! Thank you again [ more ]
Jan Dollar Did you read the articles that are linked in the "sticky" post at the top of the Pouchitis Forum? It is very comprehensive in regard to all the pouchitis treatments. https://www.j-pouch.org/topic/n...icle-about-pouchitis As for myself, I was doing OK on continuous antibiotics (a rotation of Cipro, Flayl, and Xifaxin). However, my GI was not keen on this as a long term solution. I had been on a variety of biologics (for arthritis) in addition to the antibiotics. I am now on Remicade for over... [ more ]
Scott F MADS, when single antibiotics don't work for pouchitis sometimes a combination (e.g. Cipro+Flagyl) will do the trick. That's what I'm on with good success. Also, have you tried Xifaxan (rifaximin)? It works quite differently from the other antibiotics. If antibiotics are really no longer useful, an appropriate biologic medication may work for you. One of these might work whether it's pouchitis or Crohn's. There are also more medications for Crohn's than you might expect, and they often bring... [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula ?s
P phonix2g
Jeffsmom You can come to NY! I live in NJ and we go to NY. Thank God Jeffrey never went sepsis. That was the only good news we had. The abscess was huge, on his pelvic bone and originally thought it had spread into the bone. I can suggest a couple of surgeons that are doing good work with fistulias. Your sounds a lot like Jeffrey's. Youmare so right, they can do all sorts of complicated surgeries but they can't fix a fistula. I can appreciate the amount of pain you were/are in. Jeffrey has spent the... [ more ]
phonix2g Hey jeffsmom!! Thanks for the reply. I know your son has been through alot. I've followed your story a little when I got the chance to jump on. I had a perianal abscess and fistulas. They actually ended up reeking havoc on me around this time last year. I was hospitalized from the end of October until right before Christmas. The feces that was going through the fistulas and getting caught ended up cause an infection that started to spread throughout my body to the point that I was walking... [ more ]
Jeffsmom I don't know what type of fistula you have but my son had an internal one. It was connected to his small intestine, just about the connection to the pouch. The other end was a huge abscess. He was on TPN, didn't work, went back to as Ostomy for 9 months, that worked but of course nothing involving his is ever simple. As soon as he had his second takedown, it was back! Exact same place. We know it was gone, he had enough imaging to light up the city of NY. After doing a drain for six months... [ more ]
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J-Pouch ForumsGeneral Discussion
Frustrated and feeling defeated
GoofeegutzGoofeegutz
JenJen Goofeegutz, Good to hear you got an answer and some appropriate medication! Will also say a prayer it's just pouchitis and nothing more serious. I had it a lot before I went from the j pouch to the k pouch and ended up on Cipro because flagyl didn't work. So don't lose hope if you don't see improvement -- you might need to try a different med. (I think I've heard others also mention using Xifaxan.) Also, don't know where your diet is right now, but suffice to say that you might want to dial... [ more ]
CTB23 Yes, Goofeegutz, sorry to hear you are having so much trouble so early on. Fingers crossed that this works for you and you get back on track. [ more ]
Winterberry Hello, Scott. Of course! I got it mixed up -- Flagyl, Cipro and what s. Boulardi is is meant for! [ more ]
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J-Pouch ForumsGeneral Discussion
Not sure what's up
PouchomarxPouchomarx
JordySimo I'm only two months post-op but sometimes I don't have much noise but other times, I have very loud noises coming from my abdomen area. Also, I do sometimes feel nauseous but that's something I just assume is part of the whole process of having a j-pouch. I just drink plenty of water and try and occupy myself until I'm feeling better. 8 times out of 10, when I am feeling nauseous, it's because I need to burp. Standing up and walking around gets things moving and eventually the wind does come... [ more ]
Kara Fred Pouchomarx- I had a Jpouch but now have a kpouch. The nausea has been always been there but more consistent with my kpouch surgery in 2015. I never really thought it a problem because I assumed it came with the digestive change. I didn't think it was something more. I always mention it to my doctors, but they didn't seem concerned. Hmm... [ more ]
Brewbirds My stomach makes incredible noises and always has since my pouch was created 17 years ago. But I've never experienced the mild nausea. Are you taking any meds that can bring that on? I know flagyl does that for many. [ more ]
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J-Pouch ForumsMen's Health
my j pouch/ recived in 1992
ST steve the man
murf Have had my Jpouch since 1993 and have had issues every year with pouchitis but, ciproflaxin seems to keep it in check with no side effects for me. My main issue is having to dialate on a daily basis as the scar tissue over the years keeps closing down the opening. Scoping doesn't have a lasting effect either. I should mention that i am 69 yrs. old and still very active. I have my down days but, you have to keep fighting . These forums help and you see you're not in this situation by yourself... [ more ]
steve the man I was 32 when the j pouch was put in and now 56. [ more ]
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J-Pouch ForumsGeneral Discussion
Soreness After Certain Foods
J JordySimo
JordySimo Yeah, I don't sit on the toilet and literally strain really hard with a lot of pressure. My stomach tenses up when the stool is being passed and that causes a little few seconds of strain whilst it's being passed. If I stayed relaxed, it wouldn't empty the pouch completely. I'm glad you mentioned it is necessary from your experience as I thought it was literally a case of relaxing and everything just slid out at once. [ more ]
Scott F We likely all have different ideas about when gentle pushing crosses the line into straining. Pushing a bit against a relaxed sphincter is necessary to empty a J-pouch, in my experience. Pushing hard to extrude formed stools through a contracted sphincter will cause trouble. Just try to be gentle with yourself, with soft stools, gentle pressure, and a relaxed sphincter. [ more ]
aka KNKLHEAD I notice around Christmas that my butt does get irritated a bit and I am almost positive it is the sugars -- candy, cookies, desserts that I just ... can't ... keep ... away from! Hopefully, all these things will be out of the house soon. One idea to cut down acidity in tomato sauce (which I love) is to grind up carrots. Yep. Carrots. I learned in from my sister-in-law who always has great tasting sauce! Give it a shot! [ more ]
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J-Pouch ForumsPouchitis
Treatment Change to Remicade
CTBarristerCTBarrister
Brewbirds CTBarrister- it's been awhile. How are you doing on Remicade? [ more ]
CTBarrister That is what I am thinking- I may need to go to 6 week intervals rather than 8. [ more ]
Jan Dollar You may need shorter infusion intervals. I am scheduled for 8 week intervals now, but my rheumatologist will change it to 6 weeks if my arthritis is not covered well with the 8 weeks. With arthritis, the protocol is 6 weeks, but 8 weeks is the recommended interval for IBD (at least initially, after induction). I remember when I was on Humira, I had to take it weekly, instead of the two week intervals. So far, I am doing pretty good on the lower dose Remicade. I was off all antibiotics for... [ more ]
See all 113 replies...
J-Pouch ForumsGeneral Discussion
Medication for Crohn's...
B BNellNY
BNellNY Well it IS my doctor's actual office, but it's called a clinic, there are about half a dozen doctor's there. The only infusions I've had are for iron. That's when I see all these young patients and ask them how they like whatever it is they're getting, most do complain of fatigue. [ more ]
Jan Dollar Ah, I see! I thought you were talking about your doctor's actual office! Jan [ more ]
BNellNY My doctor's office is actually an IBD clinic, and they are set up for infusions, which is how I know that a lot of the patients do get tired (from their various treatments) and a lot of young patients! Yuck, self administered? I have visions of my dog jumping up on me while I do it (kidding.) As I wrote, I will ask about the Simponi, and Cinzia. Thanks Jan. [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
Had rectum removed and jpouch created but not connected
K KC23
Winterberry KC23, being in the hospital is the right place for you as these problems come up. You are surrounded by medical staff and machines and they will look after you and figure this out. The worst thing is probably the food, and the 2:30am temperature and blood pressure checks. [ more ]
KC23 Update.. Been bleeding straight blood out of my ostomy pouch.. Definitely won't be out this morning... I'll see my surgeon in a couple hours. Out of nowhere straight blood.. Hopefully my jpouch doesn't have a leak or something.. I will have a scope in the am. [ more ]
Winterberry KC23, I hope you are feeling better and will be discharged in the morning. Do you think the blood was a result of vomiting and irritation to your stomach lining, and it came out in your pouch? In any case, I'm glad that has stopped and its outputting stool again. Try having canned soup to restore some salt. If you boil a pot of greens and vegetables with sea salt, you can sip the liquid all day. I do this with bone broth. Feel better soon. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Nutritional Yeast?
melissa111melissa111
melissa111 I did buy it. I've been eating it and it hasn't caused me any problems. I just wonder if heat will kill the vitamins in it, if you cook it? [ more ]
Drummer Girl I LOVE nutritional yeast. I am a vegan, so it is my main source of B12. I eat it daily and have had no problems. It's great in soups and sprinkled on tofu scrambles. Did you end up trying it? [ more ]
skn69 I used to take kelp, lecithin and B6 in a shake...but that was 40 yrs ago. I am sure it helped at the time but do not remember much other than the burping! Sharon [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Gas Cramps/Pains
D Dyl
CTB23 I just started about 2 mos. ago and at this point I just take it at breakfast. I only have 3-4 bm's a day so I use it to thicken things up due to some leakage issues. I also take Peptobismol at dinner and 2 Immodium at bed. So far it seems to help. My surgeon suggested to start once a day with the Benefiber and then increase as needed. Hope it helps. [ more ]
Dyl Thank you all so much! These comments seem VERY helpful. I think one thing I need to do is decrease my meal size. I have been trying to, but as mentioned, I love to eat�� Especially when I'm not as restricted like I was with UC. CTB23, would I take the Benefiber morning and night like I did Metamucil? Directions may be on the box so I guess I'll look when I get it, just curious as to what you do. Thank you all again! [ more ]
Winterberry Hello, DYL. I am nine months after reversal. The first few weeks I experienced bad gas cramps and spasms, as if there was a golf ball trying to come out! I thought there was something wrong. My doctors didn't tell me to expect that. I read about the symptoms on this site, so I knew what it was. This calmed down after two months or so. Gas comes with certain foods I eat, vegetables such as Brussels sprouts (roasted very, very well to avoid blockages), or too much carbohydrates or sugar. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
A new cure for crohn's and UC
Mema 1Mema 1
AllyKat Working out and earring min calories will cause your body to go into starvation mode and mess things up. Maybe that's why your losing hair, not the right or enough nutrition. Just a thought. Hey, I've gain a few extra pounds but have not had any trouble losing them when eating healthy and exercise. I use the free calorie counter app. My GI says I'm absorbing better. Yeah, I get the fatigue and some days it's hard to push through but it is what it is. I'm actually happier on this drug cause I... [ more ]
Endi For me, the excessive weight gain has nothing to do with remission since being on Entyvio. I've been in remission before without this problem. It's like my muscle tone and metabolism is now almost no existent. My hair falls out worse than ever. And I felt more energy when I was flaring and waking up every night before taking Entyvio than I have now since being on Entyvio. The Entyvio fatigue is depressing. My flares were pretty minor before so it's not like I had a huge problem with... [ more ]
Ljz Alleycat, grear news to hear that Enyvio has given you such reliłef! ljz [ more ]
See all 28 replies...
J-Pouch ForumsGeneral Discussion
Had step 2/3 two weeks ago- I have some questions!
cooper_coopercooper_cooper
averyo99 I think that all sounds pretty typical. After my second surgery it took a little while to heal but by a month out I was feeling pretty great. I had trouble peeing and sometimes still do. After my second surgery the mucus was the worst, but it all got better after a couple weeks. I hope everything is going pretty well, this forum is great to find out information! [ more ]
cooper_cooper Ah okay thank you! I know everything got all messed up in there near my rectum so I guess time will heal. [ more ]
CTB23 Mostly the mucus, don't remember issues with peeing. I do remember some discomfort with the mucus and trying to get to the bathroom. I also did have the mucus more so after the first step. It's funny, after this short period of time, it seems things really weren't that bad! [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
First time pouchitis
JS J. Smith
AllyKat Butmybutt im taking Entyvio and doing great I will never take a antibiotic again long term. I honestly think it screwed up my pouch Also Florestor for c diff prevention. I took Dificid for a month with the Florestor when I had cdiff. [ more ]
Janiep BTW..... Cipro has helped me tremendously with pouchitis! I also take VSL #3 DS ... a medical probiotic 2X a day. [ more ]
shaney ❤️
See all 15 replies...
J-Pouch ForumsGeneral Discussion
crohn's after having j-pouch surgery
B blood_stained_warrior
BNellNY Hi! I had my pouchoscopy almost 10 years ago, but my GI recently determined that I too now have Crohn's. I was also given the option to take biologics or immunosuppressants, and like you, was NOT up for that! I've been taking Budesonide (Entecort) for over a year now, and while it worked initially doesn't seem to be helping any more (I take a really low dose) and my GI wants me to start a drug regimen sooner rather than later to avoid surgery... I'm already on a lactose and gluten free diet... [ more ]
Semi Colon Jan, Thank you for your reply. You have given me fresh perspective. Best wishes to you for a Happy New Year. Jerry [ more ]
Jan Dollar Yes and no. My understanding is that the real risk factor is the disease itself that leads to the need for anti-TNF therapy, not necessarily the treatment itself. At least that what I read from the more recent literature. Lymphoma risk is higher with RA and Crohn's regardless. Who knows? Time may tell. But in the long run, I need to be functional. I don't plan on living forever and I want to live as well as possible. So, I have some concern, but no more than I have concern about being in a... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Mango, yoga & pilates...how not to start a new year.
skn69skn69
skn69 Thanks Janet, I tend to like my bread burnt, not my veggies...also love my meat burnt to a crisp...so I respect your right to burn your veggies! It was my dreaded 'blockage site' that felt like it twisted a bit and all of the mango fibers just caused a traffic jam just up-ahead of it and nothing was moving....for about 10 hrs...sort of scared me because the last place that you want to be on New Year's eve is ER with all of the idiot drunk drivers & the idiots who blew their fingers off... [ more ]
Winterberry Sharon, if you visit Canada again, you will find excellent creamy almond butter at Costco! It is their house brand, Kirkland. It contains only roasted almonds. I eat this on sourdough bread and it's delicious. [ more ]
JLH sharon--great description of veggie prep. thanks! i microwave them and then sauté with sesame seeds and oil--usually burning the veggies, which adds a distinct flavor not unlike a forest fire. like it that way. and of course soups are the best. i do find that i like thick soups and that clogs up the catheter. when you say blockage do you mean your intestine was blocked or the pouch got a blockage? sure hope it wasn't yoga or pilates. best, janet [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Jpouch excision
E Edubro1
chiromancer You need a qualified surgeon who has removed many J pouches, it can be a very tricky surgery depending mainly on the amount of adhesions you may have, and this something that is essentially unknown until surgery. If things go well the follow up could be done at a good hospital, with a CR surgeon in Peoria or Springfield. Even complications such as abscesses and such could be handled locally without much problem. But for the basic removal I wouldn’t do it locally, though there may be a... [ more ]
jeane I am sure there are other very qualified surgeons at Cleveland or Mayo. I just know Dr Remzi has a lot of experience with pouch excisions. I believe he is at Eugene Lang in NY now. I am sorry you are going through this. I have had a couple of consults with him myself. [ more ]
Edubro1 I am in Peoria, IL. 5.5 hrs to Peoria. 7.5 hrs to Cleveland. A couple hrs to Chicago. [ more ]
See all 4 replies...

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William J. Johnson
bjohnson@j-pouch.org

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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