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J-Pouch ForumsHelp! Need advice now!
Crohns or diversion colitis
K Kh1988
CTBarrister I have not heard of biopsies being able to determine the existence of Crohn’s or not, but in any event the actual diagnosis at this stage less important than knowing the extent of it. Inflammation can be labeled but regardless of labels, it must be treated. In this case, the treatment is takedown. [ more ]
Kh1988 Wanted to leave an update! Got a call today from my surgeon. She said the biopsies came back ok. Only showed mild inflammation. Nothing concerning was seen and nothing that appeared to be Crohns. Most likely diversion Pouchitis. So we are moving forward with takedown in one week! [ more ]
Scott F The doc has you on the right path. If it’s diversion pouchitis then the best treatment is takedown. If it seems to be IBD-caused inflammation, then getting that controlled with medication before takedown will give you a better result. The biopsies aren’t perfect at telling these two different conditions apart, but they give you better information than you would have otherwise. I had a fair risk of Crohn’s before surgery, and it’s never been ruled out. Pouch failure is more common in Crohn’s... [ more ]
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J-Pouch ForumsK-Pouch Korner
Permanent Ileostomy to a K-Pouch or BCIR?
kristencosnerkristencosner
JanW2 Emilyjt Will be sending you prayers and the best of thoughts for your upcoming October surgery. You have been through a lot and deserve the best, keep strong .💕 Let us know how you are doing please. Janice [ more ]
EmilyJT I had had a total colectomy due to slow transit megacolon and rectopexy due to prolapse and my small intestine was connected directly to my rectum. This led to chronic diarrhoea and rectal spasms which were constant and debilitating. After much research I decided to be the 4th person in Australia to get a K Pouch. I underwent my initial surgery in early February. Due to many complications I have undergone about 15 surgeries since, the most recent of which was creating a temporary ileostomy... [ more ]
JanW2 Robin Good idea on the cup of water! I also use the enema bottle suggestion that was given now. Lots of restrooms are not offering any selves or hooks anymore, let alone sinks in the handicapped spaces. Just saw that today. We are now seeing a lot of unisex bathrooms where you share sinks in the middle of the room and no walls at all! Just a 4 foot little door.Horrible idea, I ran into that in Europe a few years ago too. Schools are doing that also, oh my, no where to go in times of stress... [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3 Discontinued?
temotytemoty
Scott F I’m stretching out my stockpile of VSL #3 (by using a lower dose) and hoping it becomes available again before I run out. Visbiome is a perfectly good substitute in the meantime (and even for the long term), and may be even better than VSL #3, especially if VSL doesn’t have any insurance coverage advantages for you. Temoty, you didn’t say which VSL formulation you were using, but you can effectively substitute the equivalent formulation of Visbiome. So if you had a prescription for VSL #3... [ more ]
temoty so you're saying to try and get a double strength script of visbiome until VSL#3 comes back? Nothing is clear in any of the forum posts or visbiome site about what to do...... Anyone with specific plans of how they are dealing with no VSL#3 right now is welcome. [ more ]
Scott F Two capsules of Visbiome is a pretty low dose. It might have a small effect on delaying or preventing pouchitis, but the dose does matter. If you have no problems with pouchitis it may be a waste of money. My dose is equivalent to 32 capsules per day, at least when VSL #3 is available, and it does seem to help me with pouchitis. There is no appreciable evidence (as far as I know) that it helps with cuffitis, though it does help some people with UC, which can be very similar. An adequate dose... [ more ]
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J-Pouch ForumsGeneral Discussion
Still afraid to eat
A Andreita
blufnger03 I had a GI doctor once who used to say "if you are going to be sick whether you eat toast or a steak, then why not eat the steak?" Basically, you have to eat. You should be on a soft food diet right now. Here is a link to what a soft food diet is: https://my.clevelandclinic.org...l-soft-diet-overview Start slow and slowly add fiber and less soft things to your diet. Certain things will make you gassy or uncomfortable, just like when you were sick: onions, garlic, cabbage, mushrooms, corn,... [ more ]
BlueFlame I know you have food intolerances, but wondering if you can tolerate high fat/calorie choices just to get jump started. For me, when my weight dropped so low, I could barely push open heavy doors in a public place. That's when I decided I didn't care what I had to eat, I needed to gain weight no matter what it took. I ate fast food, ice cream, candy bars until I had the weight on my body I needed to survive. No dietician gave guidance and likely wouldn't promote this as a healthy diet, but... [ more ]
Andreita It has to get better because I don't know how much my body can endure. I'm dropping weight each day. [ more ]
See all 38 replies...
J-Pouch ForumsGeneral Discussion
I messed up
A Andreita
Jan Dollar Sorry you are having such a difficult journey. First, no need to keep blaming yourself for not being a perfect patient. Many of us has been there, crying and blubbering because of the pain and stress of it all. It happens. But, you need follow up care. You can call your surgeon’s office for a referral. If that fails, call your gastroenterologist or primary MD and explain your current issues (in concise terms). They don’t need the whole drama. If asked what happened with your surgeon, you can... [ more ]
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J-Pouch ForumsGeneral Discussion
Opinions on VSL#3
HeatherF21HeatherF21
Paul H Gives me terrible gas, have tried it several times with same problems, even lowering the dose. Here in Spain available as Vivomixx, exactly the same as vsl3. Worth trying though. [ more ]
lablover VSL is no longer available here. DH uses Viasome (sp?). He finds in better than VSL#3. [ more ]
HeatherF21 Thanks Scott, looking forward to tying it. I’m in the UK and VSL is available in pharmacies & online here without problems. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
butt release tunnel valve 🙄
K kay
Winterberry Kay, the "shrinkage" sounds like a stricture. This is when some part of your exit is narrowed, and can cause bowel movements to be thin (like a pencil) or very difficult to push out. Don't push because you might cause hemmoroids or more fissures (the feeling of razor blades!). If you can get an appointment with your surgeon or GI, they can stretch your stricture, if that is what you have. Use a bidet bottle, as Scott suggested, after every BM, and no wiping with dry toilet paper. A bidet... [ more ]
Scott F Kay, the sensation of “crapping razors” is often a sign of an anal fissure. If that’s what you’ve got it can be treated with cream/ointment containing nitroglycerin, nifedipine, or diltiazem. You can also try cleaning yourself with a spray bottle or bidet instead of toilet paper, and soaking in warm water (a sitz bath) might also help. [ more ]
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J-Pouch ForumsGeneral Discussion
PSA test results and jpouch
ItsanewworldItsanewworld
Catinthehat Pouchomarx, I just had my appt. with Urologist. I'd had a urinary blockage after surgery a year ago, but things are looking good now. I told him I didn't want to do the digital exam now because I want to get more info from Dr. Shen. My Urologist was ok with that. (I've had an abscess in my j-pouch that Dr. Shen repaired endoscopically and don't want to do anything to cause damage in there.) [ more ]
Pouchomarx I had a followup with him and it was just a random question I had asked him about how prostate exams are done with a jpouch.. He just said to do a PSA test. I am 48 so I am getting to that age [ more ]
Catinthehat I'm glad I saw this post. I'm supposed to have a prostate exam this week. Did Dr. Shen give a reason why? My psa is good for my age (73) at 3.08. Also interesting that he is moving to NY. He may have saved my life (but that's another story). [ more ]
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J-Pouch ForumsGeneral Discussion
Cannabis/ CBD with a J-Pouch
Maria410Maria410
Mary O I have a lot of scar tissue and it has become “sticky”. The scar tissue sticks to my abdominal wall, particularly around the rib cage. In most people, everything in your abdomen sits in harmony and fluidly moves around. If one has an organ removed, the natural order of things is out of whack. I’ve had four abdominal surgeries related to my J pouch and a hysterectomy. The adhesions stick to things, which creates pulling. The physio attempts to make things less “sticky”. [ more ]
juanaton hi Mary O. Thanks for your reply. No. I have not done, nor considered, PT for my abdomen. Why did you do PT? Were you having stomach pain similar to what I described? [ more ]
Mary O Juanaton, have you tried to find a physical therapy that specialises in dealing with scar tissue in the abdomen? I’ve been seeing someone that has worked wonders for me in various parts of my abdomen, including near my rib cage. By no means has it cured all of my many problems, but it has helped a lot. I’m in London but I know she trained in Canada. Also, I will be moving to Chicago soon and plan to look into CBD once there. [ more ]
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J-Pouch ForumsGeneral Discussion
Calling anyone who follows Bo Shen diet suggestion
N NJK
winter wish Hi I recently bought a chapter in his book https://www.sciencedirect.com/...B9780128094020000277 Bo Shen recommends a low carbohydrate, low fibre and high protein diet similar to Atkins(as per book). The way the pouch is formed predisposes us to SIBO so low carbohydrate helps this. He also stressed the importance of keeping hydrated. [ more ]
SWG Hi Vanessavy! I’d like to read the thread but am not having much luck finding it. Could you provide the link? Thanks!!! [ more ]
liz11 Shen actually did tell me specifically to try FODMAP. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood tinged mucus from jpouch
K Kh1988
Winterberry When I had the external bag, I was eating lots of well cooked spinach. Not all of it went into the loop ileostomy into the external bag. Some of it bypassed it altogether and came out through the (not yet connected) j pouch and came out like stool. My surgeon said this was possible. I guess if the food is slippery or very soft, as my spinach was, it will think it should come out like poop. I took it as a good sign that my new j pouch was ready and willing, and all that was left was the... [ more ]
Aimc I also had blood mixed with the mucus. My surgeon told me it was normal. [ more ]
PouchLogic I believe I also occasionally had some bloody mucus from. I wouldn't overly worry unless there is a significant amount of blood, if it gets worse I would definitely be getting ahold of your doctor though. Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Nuval valve
J JanW2
skn69 Oh Janice, I feel so bad, even though it did not work for me, I always kinda hope that it will work for others. I am so sorry that you are back on the merry-go-round and that things have not improved...we have got to find a better way to fix things...too many complications, not enough solutions other than surgery. At one point hubby was trying to figure something out but in the end, it just didn't work...and he gave up...we need an engineer to marry a pouch surgeon and have continent pouch... [ more ]
JanW2 Hi Sharon, Thank you for checking. Things did not go well though, I only kept the NuVal in a week. After a day and a half it was leaking stool constantly and the pressure was so intense when I would go to empty it would just explode out!. I had to keep pushing it in and it was quite painful for me to sit up and even walk to the bathroom. I was nauseous and had diarrhea the entire time, quite unusual for me as I suffer from chronic constipation . They just thought the gas build up was so... [ more ]
skn69 HI Jan, How is it going? Did you get it done? I had mine sent to me and placed by a stoma nurse in 2008...not the best results in my case, mostly because I had a peristomal hernia so it would not stay in. But if your problem is different you can live with it for years...I know of a few people that have kept the same one in place for over 2 yrs. Good luck and keep us posted. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Getting cold feet!
EricEric
TE Marie Eric there's a bunch of people on here that are rooting for you. Post when you can. Thanks for the update Sharon. [ more ]
skn69 Yes, I did. I took him a fancy scarf too...he needed something nice to make him smile. Never, ever underestimate the power of a visit from a friend...a little bit of humor, a few jokes and a hug go a long way to help people feel less lonely. Please, please, if and when possible, go visit someone in the hospital or at home convalescing, who needs help, warmth, friendship or a coffee from the outside world. I always visit and never empty-handed...even strangers. A flower, a stuffed animal, a... [ more ]
TE Marie I think Sharon did make it to see him [ more ]
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J-Pouch ForumsGeneral Discussion
Lifespan of pouch
descartes101descartes101
skn69 I've had my K pouch for 40 Yrs this summer...still the same pouch...it is made out of your intestines, no artificial materials so it should age normally like the rest or you or even better for some. Hernias are an occurrence that can happen for a lot of reason, inborn muscle defect or weakness, overexertion during exercise or lifting of something heavy or due to age and the thinning of your muscles. As a woman, I started getting them after age 45. I got about 8, one after the other and then... [ more ]
Mary O I’ve had a j pouch for nearly 25 years. My brother has a pouch (before the J pouch was invented, but it’s basically the same thing) that is 53 years old. Both of our pouches are healthy. [ more ]
Accept It Ive had my J pouch for 34 years with minimal complications. [ more ]
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J-Pouch ForumsGeneral Discussion
hemp oil or CBD oil for pain and inflammation ??
PouchomarxPouchomarx
K_InTheFlo So why did you start taking Charlotte's Web? How do you feel it has helped you? Thank you! I'm looking into it for myself! -Karen [ more ]
TinCan I should add that when using the tincture, the dose should be placed under the tongue for more effective absorption of the CBD. [ more ]
TE Marie I selected the company I purchased it from after reviewing different companies as best I could and it isn't easy. I agree with Tincan. So don't take the information I furnished as a recommendation. I did my homework but didn't feel any benefit from the product I purchased. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frequent episodes of Diarrhea
M Maxx
Maxx Hello SWG - I did a few things and it kind of solved the problem. I took antibiotics (Ciprofloxacin 550 twice a day) for about 10 days. (earlier I was doing shorter course). I stopped drinking tap water, I use a purifier at home & bottled water when outside. I try to eat freshly cooked food and stopped eating leftovers most of the time. After doing all of this, my diarrhea episodes have been reduced greatly. My doc thinks it all happens due to bacterial infection and because of low... [ more ]
SWG Hi Maxx - My son is experiencing similar symptoms to the ones you described in this post. Have you discovered a way to address them or has it resolved? [ more ]
Maxx Scott - I have tried Metamucil that worked okay to temporarily relieve symptoms. I am having issue in only those 4-5 days when I have too watery stool and a sick feeling, bloating etc. After that episode is over, the stool becomes consistent enough. Even get constipated sometimes. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sick for 10 days
U UCfree2012
Aimc Wow sorry, I meant pouchitis. Not sure where that came from. Stricture not structure also. [ more ]
Scott F Gosh, not peritonitis, I think. It could be something not sensitive to the selected antibiotics - Giardia, Campylobacter, Shigella, C. Diff, even amoebas. It’s probably time for more tests, unless you’re getting better. OTOH lots of us seem to take longer to recover from these than in our pre-pouch state. [ more ]
DJJ2019 How many doses of the antibiotics have you taken and what dose? Have you ever had pouchitis? If it is pouchitis, then being sick for 10 days is not the same as being sick for a day or two, meaning the antibiotic may take longer to take effect. I personally feel the antibiotics working within 12-24 hours, but if I've been sick and dehydrated, then sometimes 48 hours, but I know it is working., and the effect is gradual. I hope you start to feel better soon. [ more ]
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J-Pouch ForumsOstomy & Skin
Finally ditching the j pouch
LORI726LORI726
Kushami ❤️
Saff Hi Wendy, I second Richards sentiments, I’ve just had the surgery 4 mths ago and I was terrified for a few years before doing it, but it’s worked out fine, it was also my easiest surgery to recover from. I think once I decided to finally do it and make a commitment it was easier, so I hope you feel some relief having made a decision. Now hopefully you can do your best to be well for the surgery and have all your questions answered as well as possible before hand. And take time to recover and... [ more ]
WendyNemec Thank you everyone! It's good to hear that life after a J-pouch removal sounds promising. Bill, I hadn't heard about the BCIR. Thank you! I have been reading everything I can on it. I go to Florida often, so the trip wouldn't be such a hardship if my insurance pays for the surgery and stay. I know I am also mentally and physically so drained and want...need... to do something. This group was a savior for me back when I had my J-pouch surgery done and I am so glad that it is here for me again. [ more ]
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J-Pouch ForumsGeneral Discussion
Potassium Supplementation?
SpookySpooky
Aimc Correction: salt stick caps 10 and salt stick plus 15. [ more ]
Aimc According to there site, you can take between 10-15 a day. Depending on physical activity. [ more ]
BlueFlame Follow up: Have decided San Pelligrino isn't a regular option due to the bubbles; however, it did seem to quickly resolve leg/foot cramps and very dry lips. I've started with SaltStick caps instead and that seems to do the trick, as well. Hard to say, but seems I do not need to drink quite as much water to stay hydrated. It's nice that it's very portable, as well. Aside from taking during exercise, I'm really not sure how many/frequently to take the SaltStick caps for our pouch purposes. I'm... [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch help..
D Dawnoo
lablover My DH wears Ultra thin pads (overnight) with wings at night. Helps alot [ more ]
Aimc Dawnoo, in the mean time, maybe take some fiber before or after each meal. I take 2 lomotil and 2 Imodium before bed. Try emptying your pouch before bed. You could also ear a small thickening snack before bed also, like a couple of peanut butter crackers or just a bit of peanut butter without crackers. I kind of sounds like you have pouchitis though. If you can't get into a GI fairly soon, maybe your surgeon could give you an antibiotic. Good luck with it all. Keep us informed. Aimee [ more ]
Dawnoo Thanks ..believe I will find a new GI. I had that in my thought process.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe Diarrhea & Gas
P Pouchbro
Andreita @Pouchbro how are you doing now? [ more ]
Accept It So sorry to hear this. Hopefully you are on the road to recovery!! [ more ]
Pouchbro Update I am in the hospital now with a “Chrons like flare” and fistula. Coprocessor/flagyl, blood transfusion, iron infusion, insulin shot, budesonide, prednisolone, Canasa suppositories, I came in because my body cannot take it anymore. I think Chrons or UC could be causing the gas. [ more ]
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J-Pouch ForumsGeneral Discussion
Ok Humira, here we go......
B BlueFlame
BlueFlame So glad you have a good response to treatment. It's things like this that make me doubt if I should skip Imuran and go straight to biologics. What did your scopes look like prior to and after Imuran treatment? Did you/do you have ulcers and chronic inflammation? [ more ]
JJA My pouchitis was only controlled on antibiotics and Budesonide-whenever I tried to wean the budesinide pouchitis returned. I never tried immuran or 6MP or biologically because bios didn’t exist and 6MP was brand new and my colon was giving out on max prednisone and I had to have pouch surgery immediately, in 1991. My GI offered immuran or immuran plus Humira or remicade. I opted for immuran only (plus rotating antibiotics) as a first step because I didn’t want to be hooked on biologics... [ more ]
Scott F It’s worth remembering that the insurance company does not have your best interests at heart. What they propose isn’t awful, but neither is it the best approach medically. It’s just the least expensive. [ more ]
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J-Pouch ForumsGeneral Discussion
Improving QOL and pouch function with intermittent fasting?
S slouchypouch
Cassandra I have the same problem with water. It just runs right through me and takes anything I have eaten along with it. Sometimes with leakage. Drinking water just makes it too hard have any food in my pouch. I am totally open to the fasting idea (I've had pouch 26 years and been dehydrated all that time with several kidney stones passed and surgically removed.) The thing about the fasting idea is that I have been anorexic pretty much my whole life and would not even eat at all if I didn't have to. [ more ]
girlunky Glad to hear you are feeling better. My surgeon told me not to drink when I eat - leave time in-between. I guess you are wishing to lose weight, but at some point if you do not level out you will need to increase your calories. High density foods like nut butters can help you get calories without a lot of bulk. [ more ]
slouchypouch One more item. I'm tolerating medications while fasted without any issues. I still try to be tactical and take my meds during the eating window which isn't always possible. The 16/8 schedule (skip one meal) was ok but the 20/4 schedule utterly changed me quickly. I feel a lot better being fasted and able to drink water and hydrate. Previously drinking more water just makes me shit more water out. Water + food has always been a disaster for me. Food choices did improve that situation but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Entyvio / Vedolizumab
D Deedeeh
Deedeeh Hey CTBarrister thanks for that advice, I will do that now [ more ]
CTBarrister This drug is more commonly known here in the USA as Entyvio. You might want to edit your thread title to do an a/k/a in the thread title, in order to get more responses from recognition of the term. There are people on the board using Entyvio. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain meds causing ileus
D DJJ2019
CTBarrister Opioid Pain meds also caused me to have a postsurgical ileus but only because I overused them. Muscling through the pain with Tylenol is one approach, and another is using minimal amounts of opioid pain meds. A postsurgical ileus really sucks, and the combination of the nausea, vomiting and NG Tube is much worse than dealing with the surgical pain. [ more ]
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J-Pouch ForumsK-Pouch Korner
K-Pouch Gastroenterologists in Los Angeles
Art MomArt Mom
Goldfarb There is a new doctor that works out of Olympia hospital that works with Dr. Don Schiller. His name is Dr. Pouya Benyamini and his number is 310-526-0290. I believe he is familiar with all pouches including the kock pouch. [ more ]
BillV Dr. Beart did my J pouch surgery at Mayo Clinic in 1983 and I highly recommend him. I do not know how active his practice is or if he has retired. He could recommend a gastroenterologist for your daughter. Since I have FAP, I get a scope exam annually by my GI. The person’s diagnosis usually dictates the frequency of scope exams. Another excellent surgeon in LA is Dr. Don Schiller, but his specialty is the BCIR. [ more ]
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J-Pouch ForumsGeneral Discussion
strange, itchy feeling inside the anal canal
A Alexamsterdam
Alexamsterdam Sorry It’s called Tormentavena. [ more ]
Alexamsterdam Hi Strange, Thx for your answer. I got ointment (diltiazem) from my surgeon and use it the same way you do. I have to say it helps. the internal itching is no longer constantly present. What a relief! now i can continue to learn how to live a normal life with a pouch. when I read the stories of others about all the problems which can occur I should not be dissatisfied. but if your life was turned upside down out of the blue last year, you can't help comparing your current situation with your... [ more ]
Former Member Yeah, its an anal fissure; it happens to me from time to time; I can even pin point a specific spot within. I assume we have folds, grooves, creases and contours up there and from time to time, little tears or abrasions occur, which are engulfed within the acidic output. What works for me, which sounds rather uncomfortable but isn’t; is the application of ilex protectant paste applied within; which I’ve been applying in such a manner, every now and then for quite a few years and, without... [ more ]
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J-Pouch ForumsGeneral Discussion
Toilet paper recommendations?
M MCH
Winterberry I was in a Dollar store recently and saw the toilet paper they sell. It looks like a cheaper grade tissue, not too soft; a firm texture. You could probably use it to write a grocery list if you don't have notepaper! But it might be what you're looking for in a firmer tissue. Or, you could ask at the place where the public restroom is, and they might be able to tell you who supplies their facilities. [ more ]
Winterberry It might be possible for you to experience little to no burn, and use less toilet paper by using a bidet bottle to rinse first, then gently dab dry with any brand of toilet paper. No wiping required. I started off with a travel bidet bottle from Amazon, loved it so much and it healed my burning skin, I bought an attachment piece for the toilet so that water is "on tap" so to speak! I love my bidet. Cost around $100 or less. [ more ]
JJA Used to love cottonelle, but switched to charmin ultra. Also a big fan of wipes and an even bigger fan of my bidet!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Could this be c.diff?
Mema 1Mema 1
CTB23 I have my first case of pouchitis and was told to call back if it returned after stopping the antibiotic. Hopefully it won’t! [ more ]
Scott F It’s possible that the pouchitis is returning. That’s what happens to me if I stop taking antibiotics, though each person’s symptoms are a bit different. [ more ]
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J-Pouch ForumsGeneral Discussion
Misdiagnosis
R rustyskyline
TMG My orig reply was commenting to someone’s shared thought; Not stirring up someone else’s emotions or asking for an debate. Every single person is different and we all make mistakes, even doctors. To criticize anyone on this forum for sharing their thoughts and emotions Is not necessary . Total colectomies have decreased due to better meds available “and” doctors are treating IBD differently due to new knowledge, education and research. - ctbarrister- at no time did I say total colectomies hv... [ more ]
CTBarrister I didn’t have local anesthesia. My surgeon told me my colon was dissolving when he removed it and I believed him. All the testing I had prior to that suggested the UC was no longer treatable- also had dyplasia and the inflammation was throughout the colon. This is not fiction, it is fact, and it’s offensive to suggest that my doctor would have made something up. Everything else I posted here was based on my history, my scopes and my knowledge of the disease process and the law. BTW my... [ more ]
rustyskyline CTBarrister, My doc told me I had ulcerative colitis and needed to have a colectomy or I would likely die. Turns out oops, he was wrong. I certainly wouldn't trust him if he told me a story about my colon dissolving before his very eyes upon removal. But kudos to you for undergoing your procedure under local anesthesia so you could see it for yourself. [ more ]
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J-Pouch ForumsK-Pouch Korner
Chronic pain management
R Rickiroo
Former Member I have had three different Stimulators. The first two did nothing to help rectal area pain. The third one and the one I have now is called the DRG. It goes down through the sacral vertebrae instead higher along the spine. It covers the s3 and S4 area. My pain use to start below tailbone and run down where my rectum use to be. The higher area of pain gets %100 relief. The lower lead unfortunately moved so it doesn’t help as much. I would totally recommend the DRG from Abbott. [ more ]
Rickiroo Anyone, please help. Thank you my email is rickiroowho@yahoo.com [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt Burn
J Jpouchinseattle
Former Member I suggest Carlesta adult skin protectant. It will heal raw skin overnight. [ more ]
Former Member Ilex paste https://www.ilexhealthproducts.com/usd/ https://www.ilexhealthproducts.com [ more ]
Raj Metamucil will surely thicken up things but there's a catch. It may also come with added gas pains and increased urge to rush to the bathroom. Focus on foods that fit you. Eat alot of bread, pasta , hard boiled eggs(if they suit) , bananas, butters,chicken. Steer clear of large portions of fresh fruits or salads, sugary foods. A little sugar won't harm but trust me you don't want to overdo it. I rarely eat chocolates and desserts now. They give me instant diaroehha. [ more ]
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J-Pouch ForumsGeneral Discussion
Starting Entyvio
MB Mr bill
CTBarrister BTW I could be wrong, this seems to imply a standard dosage of Entyvio: https://www.entyviohcp.com/dosing 300 mg. My Remicade dosage is based on my weight. [ more ]
Mr bill Thanks to all responders! [ more ]
CTBarrister I believe the dosage of all biological drugs is based on your body weight. The lack of a colon has no relevance because the medicine doesn’t work on your intestines, it works on your immune system to suppress it. I know for fact that my dosage of Remicade is based on my weight and I believe it’s the same for Entyvio. Both drugs are infused by way of IV. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchutis ?
E Enterin
Enterin I did a stool test on parasites and viruses . Parasite Criptosporidium and Entamoeba hystolitica / dispar were detected. I drink antibiotic, today is the last day.metronidazole 3 x 250 grams . [ more ]
Enterin Thanks a lot. I'm okay, but I only have 64 pounds and I'm 185 cm high. Al is more at psychic level, I do not eat much. Before this diarrhea I ate a lot of tomatoes [ more ]
Winterberry Hello, Enterin. When I have urgency or frequency, it is usually because of something I ate that had too much fiber, such as Brussels sprouts, raw salad, whole wheat bread, or if I ate too much at a family party. When this happens, I eat light meals for two or three days so my pouch system can rest. No fiber, no spices, no acidic food, no raw food. Eat fruit, but no fruit skins. Eat vegetables that are very well cooked and soft, but don't eat the skin. Skins and peels can cause more loose... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Help with Food - J-Pouch Dietitian?
S Spooked
tf I have J-pouch since 2015, diet and input is key. I said before that the FODMAP diet really works. There is no one diet and it is a mix of a few. Whatever works for you. Keeping track each day of what u eat and how much and what gives u pain, burning, gas, heartburn, etc. Then again in another week it could change. It is very complex. You will figure out soon enough what works for you. The dr's plainly tell that from the beginning. Eat what u can and doesn't bother u. Many suggestions out... [ more ]
CTBarrister I think when it comes to diets you need to experiment but the one I posted has science behind it unlike the others. Despite this there is a trial and error element as the impact of any diet varies with each individual. [ more ]
Spooked Thank you both. CTB23 - you sound like you're having similar problems to me, actually. Despite being overly conscious about my weight for most of my life, I find now that I'm *trying* to gain it, it's incredibly difficult. It's like the more food my body has to process, the worse it feels. CTBarrister - I've looked into this before, and maybe I should give it a try? My main problem with dietary guidelines is adherence. And with so many opinions floating around, I always end up doing 'parts'... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pouch Endoscopy Results?
B BlueFlame
maddie18 Hi Has anyone had to take Pico salax before their pouchoscopy? [ more ]
BlueFlame Yes, cryptic distortion and ulcer in the pouch. Last year indicated the same; ulceration was new last year. However, multiple scopes last year and prior years indicated acute and/or chronic inflammation, cryptitis and surface erosion in pouch, afferent limb, efferent limb and transition zone; the current pathology does not state any of this. I understand the sticking point is presence of ulceration. I do not know at this point how the ulceration compares to last year. [ more ]
Scott F “Cryptic distortion” is disruption of microscopic structures in the gut wall called crypts. It’s less significant than cryptic atrophy. It’s not definitive evidence of Crohn’s, and I don’t know whether it might show up in pouchitis. Was the cryptic distortion in the pouch itself? I’ve never had nor needed a B12 shot. I do get my B12 tested occasionally, since we are at increased risk of B12 deficiency. [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
Sore
E Emuhyee
Bbe That’s great for you. You may want to talk to your nurse about other patients you can talk to directly if ever you have questions that require immediate response. Everyone on this forum is awesome and have lives outside of this webpage so they try and stop by and try and answer some of us newbies questions as best they can their is no need to be rude with people who are only trying to help maybe the response didn’t come through fast enough for you but there is a search area on this sight... [ more ]
Emuhyee Yeah you are all too late with answers. I’m fine now. [ more ]
Winterberry Scott is right, it will take time, your body has been through a major ordeal, organs pushed aside, removed, and a new one constructed. This causes swelling, bruising, pain from everywhere whether you're sitting, standing, lying down. It took me several months (6?) before I could sit without pain shooting from my bottom into my abdomen, from fire burning BMs, constant issues everyday. I thought it would never end, until one day, out of the blue, it was so much better. My pouch learned to live... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
fistula
R raphael
JJA I will caution you against letting them to a traditional “lay open” fistulectomy. They did that to me and it left me incontinent. I’ve since had a spinster repair, use thicken meds and a cotton ball tucked up there and have a spinal chord stimulator. I do ok with it (still love my life and deal with occasional accidents). Docs who did my repair said the traditional lay open surgery should never have been performed on someone with a pouch. Humira or a seton are various options to treat a... [ more ]
Aimc Raphael, I think you are prob. close when you say they seem to not know what they are doing. I think they are really hard to get rid of. My surgeon put a stitch in mine and it healed a bit later. I now have stricture. I honestly don't know if they are related, but I know they all seem to not want to deal with the fistulas. I guess we just have to go with our guts and pick who you believe to know their stuff. Good luck with who you decide to go with. Keep us informed. Aimee [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
I can't sit
A Andreita
JJA They sell various coccyx cushions-I’ve used several different ones over the years-an oval donut shaped one as well as a square one with a wedge shape and a cat out near the back-can really help take the pressure off back there if/when you are sore. [ more ]
BlueFlame I can almost assure you, people are not looking at you funny because of how you sit. If they do, so what. You are healing. As the others have said, it will definitely take time.....and maybe a pillow, non-NSAID pain relievers, gentle skin care, etc. [ more ]
Andreita I really hope so. People are looking at me funny because I don't sit normal :/ [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
SIBO and tons of antibiotics!
B bkinnear
CTBarrister This is very good advice. It should be added that dietary changes will not necessarily lead to overnight or instant improvement. It will lead to improvement of SIBO over the long term. Low FODMAP is a good diet but any less structured diet restricting sugar and processed carbs will do the trick. [ more ]
Pouchbro I’ve recently read that adding probiotics (as suggested above) May worsen SIBO. Small instestinal bacterial overgrowth, since you already have an overgrowth ADDING more bacteria through pro-biotics may (and logically it makes sense) worsen things. Try the low FODMAP diet and remember that carbs such as bread and rice turn into sugar and the bad bacteria’s feed of sugar and carbs causing gas and other issues. [ more ]
lablover No new meds as I recall. After the last round of antibiotics he was okay. Plus to stay away from beans and stuff. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Stool in jpouch while I still have a loop ileostomy.
S Sammie1997
Pouchbro If you are lactose intolerant or have some sort of allergy and are eating dairy or the problem food it could likely be discharge & mucus from your anus passing rather than actual stool passing through. This happened to me when I was in your position. [ more ]
Andreita Hi this happened to me after the second step. The nurse told me that the volume of stool is still less than if you don't have the bag at all. It is good that not all of the volume goes into the j-pouch yet so it still recovers. After the second step I needed convex flanges instead of the flat ones. Without them I leaked like crazy and the disk park around the stoma didn't stick at all anymore. [ more ]
Scott F Just to be clear: is this a loop ileostomy? Is your concern that too much of the stool is bypassing the loop ileostomy and coming out from the anus? If the above is correct then you needn't worry about an infection. Your J-pouch may not be getting quite as much rest as intended, but it’s likely to be just fine. Good luck with that wound healing. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Change in Pouch Function long term
HeatherF21HeatherF21
Spooky The suggestions above are all good ones. Definitely test for Celiac and rule out SIBO. I would add too that sometimes seemingly small things get overlooked; for example, if you have had any recent changes in diet or lifestyle, such as an increase/decrease in exercise, change in sleep schedule, change in times that you eat, etc? This can all impact pouch function. But if the scopes otherwise look fine and there is no active pouchitis or inflammation, looking at your diet is a good place to... [ more ]
CTBarrister You may have a SIBO situation if Cipro is working well. You claim your diet is good but you don’t comment on sugar consumption. Sugar consumption could be behind SIBO and frequency. Targeting gluten and probiotics is fine but getting rid of sugar in your diet is another step you can take. Sugar is a much bigger culprit than gluten in SIBO and frequency except for those with Celiac Disease. And if you don’t have Celiac Disease gluten isn’t or shouldn’t be a huge issue. If you haven’t tested... [ more ]
HeatherF21 Thanks guys, I’ve never taken any Imodium or bowel slowers since the op as haven’t needed to or been on any medication (except Cipro for a confirmed bout of pouchitis a while ago). All very weird but I know that Cipro works great to alleviate my symptoms regardless of what the scopes are saying...... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Bloated feeling
M Mreyna
Pouchbro Kombucha will leave you even more bloated due to the carbonation and most are basically packed with sugar especialy since sugar is used during its brewing/fermentation. [ more ]
Aimc I swear that area was numb for days for me. I guess that's okay because it didn't hurt. [ more ]
Mreyna Yes I did l My first one in Minnesota was not bad. The doctor in san antonio and then my home town was extremely painful after I woke up. I just dont think these drs had done them enough😕 [ more ]
See all 6 replies...

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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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