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J-Pouch ForumsGeneral Discussion
JPouch or Permanent Ostomy?
S StarKitten
StarKitten Thank you all, I'm hopefully going to see about planning a surg for a jpouch in June. (Or May, but prefer June) [ more ]
marc nolan I had a bag for 13 years, by choice, as I was afraid of the issues with a J pouch. For me, it was fine, it let me eat and drink everything apart from popcorn. I emptied , as you say 4-6 times a day, emptied lots more with alcohol and fried food. i eventually got it reversed and had a temp ostomy that produced so much more, it was not as comfortable. Having a J pouch for me has its ups and downs but I am delighted I did it, I have my issues with it but I am learning. I am in the minority as... [ more ]
Mysticobra Well put Scott. [ more ]
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J-Pouch ForumsOstomy & Skin
Loperamide Or Lomitol usage
TE MarieTE Marie
TE Marie My insurance quit covering loperamide and forced me to either pay for it myself or take the OTC imodium. I bite them in half to aid in their digesting as they were not fully dissolving. The loperamile was in capsule form and I think worked better. [ more ]
Isbella I know especially Lomotil that is the only one that my body responds to.. [ more ]
TE Marie The price of OTC generic Imodium has gone up by 3 times since the last time I purchased it [ more ]
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J-Pouch ForumsGeneral Discussion
Problem constant urge to poop
J Jawesome
Scott F This could also potentially be a spasmodic pouch. If so, your doctor could provide an antispasmodic (like Bentyl or Levsin) until this calms down. [ more ]
Still Standing You might want to be checked for pouchitis. One of my symptoms for the ‘itis is urgency to go whether or not much comes out. [ more ]
Former Member I experienced a similar sensation accompanied with excruciating pain a few days after takedowm; the uncontrollable urge to bear down & pass what felt like a golf ball sized object but nothing would come out. On the advice of the Hospital Pouch Nurse, I applied ilex Protectant Paste just to the inside of my anus, which instantly alleviated the pain and within a matter of hours the uncontrollable urge to open my bowels also ceased. However, on the ilex packaging and tube, it does state FOR... [ more ]
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J-Pouch ForumsGeneral Discussion
2nd surgery out of 3 when will I feel better
vallivalli
valli Thank you for the advice and knowing I am not alone or imagining the pain helps. I do walk down the street with the help of my kids once or twice a day, as hard as it is I fight the pain and just do it. Just so looking forward to getting all these operations over and done with. [ more ]
CTB23 Definitely got better for me after the third surgery. [ more ]
Still Standing It will get better, but as everyone else has said, "This surgery is the worst". All that flipping and twisting of our insides takes a while to recover from. My doctor mentioned that I could alternate between ibuprofen and Tylenol every two hours to help alleviate the pain. It took the edge off, but time is the only cure Keeping you in my thoughts and prayers! [ more ]
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J-Pouch ForumsGeneral Discussion
2 Weeks and counting to Permanent Ostomy
C Croachpa
maggies4 ❤️
TE Marie I had to make the same decision to have my j-pouch removed. I wish I'd made it sooner. I am off all medications I was taking except I still take hydrocodone for adhesion pain. That is minimal compared to what I took before. My surgeon too spent 5 hours lysing my internal adhesions during the 8 hour surgery. The permanent ileo is on the left side whereas the temp ileo had been on the right. I was in the hospital 5-6 days afterwards and the recovery was much easier than after... [ more ]
Croachpa Thanks Bill, I talked with Dr. Schiller in LA about the BCIR and while I am a candidate for the surgery - He feels will all the problem of chronic pouchitis it could show up again and cause problems with either a K-pouch or BCIR and I could loose two more feet of bowel and have to have additional surgery. I've decided in my case that the risk is too great, with my history. Thanks, Carolyn [ more ]
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J-Pouch ForumsGeneral Discussion
Chemotherapy with a j-pouch
CJBCJB
Auntie JoJo Hello, I have a jpouch, (2000-2001, UC for 30 years) and was recently diagnosed with CLL Chronic Lymphocytic Leukemia. I now need treatment and based on research and patient reports over 50% of people have diarrhea from mild to severe on the drug will be taking. Ibrutinib or Imbruvica is the name of the drug. Has anyone on had chemotherapy, biotherapy or immunotherapy and how did their pouch do? What kinds of therapeutic interventions helped? Thanks so much. [ more ]
mgmt10 I don't have any experience with this but I just wanted to send well wishes your way for a complete recovery. [ more ]
skn69 I am so terribly sorry for you cjay, Unfair does not cut it. I barely remember...I was so young and I have a k pouch (but that should not matter really) I did 2 sorts of chemo (they are not always the same drug, chemo is just a catch all name for a nasty chemical treatment against cancer these days)...for vaginal cancer due to DES...I remember being sick as a dog, throwing up my guts (I was around 25 at the time) and losing about 30lbs in 1 month. They hospitalized me for 31 days then gave... [ more ]
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J-Pouch ForumsK-Pouch Korner
Spasms in or near K-pouch
B Bodoni
JLH hi--i've had obstructions, which are accompanied with pain, bloating, nausea (when very bad.) has your doctor considered adhesions, caused by surgeries? who do you see in nyc? i go to dr. kiran. it might be worth it to have your electrolytes checked. certainly easier than a scan. i've had imbalances and don't recall spasms related to them, but everybody is different. when were you last scoped? do you get them on an annual basis? it is always discomforting to not know what is causing a... [ more ]
Bodoni I wonder if any kinds of meds could cause spasms in or near my K-pouch? [ more ]
CJB Thanks for the partial obstruction tip. I stopped taking metamucil a few weeks ago, and that helped a tiny bit. But how long would a partial obstruction last? Not weeks, right? Maybe the problem can mysteriously disappear, just as it appeared. That would be fine with me. I might ask for a CT scan also. C-jay [ more ]
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J-Pouch ForumsGeneral Discussion
red meat bad?
PouchomarxPouchomarx
CTB23 I eat some red meat, on occasion, mostly in chili with ground turkey also. I very rarely have steak, unless it's a filet. Mostly fish and chicken. I just try to eat it in moderation, like Jan suggests. Not because I worry about my pouch, just because I've always eaten this way. Also, my husband has to watch what he eats. [ more ]
MIKEEY I eat burgers once a week and seems to not bother me. Just love spiral ham or baked ham ans keep away from it and wondered if it digests well with pouch? [ more ]
Spooky I agree with Jan. I love Mexican and Indian fare. In moderation, these choices are worth the butt burn! More on topic though, and this can't be repeated enough: what is a trigger for some is fine for others. For example, even though I eat mainly vegetarian, I don't tolerate mushrooms or peppers or corn, though these are staples in many vegetarian diets. Carbs for me, it depends. I'm okay with having pasta once in a while, but if I eat it too often, I have problems. You'll probably find a lot... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchogram showed a small leak :(
*Zoe***Zoe**
Carlitos Yes she is still draining the abscess from the anastomosis's leak, but she is 2 months old from the takedown with her loop stoma. She is waiting to recover and hopefully she will have her reversed stoma in the next months and live with a healthy pouch. Thank You for answering! [ more ]
*Zoe** Has your friend got an abscess as well as a leak? sometimes with time the leak could heal itself [ more ]
*Zoe** Yes I did have takedown but things were very bad, the leak came back as soon as the stoma was reversed. I was without the stoma for 2 months and had to have one again because of all the problems i hope things are better for your friend [ more ]
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J-Pouch ForumsGeneral Discussion
JPouch and diabetes
TrottsTrotts
Winterberry Hello, Kim. I am doing really well. My surgeries were completed two years ago! I have no complaints with my j pouch. The first few months of j pouch life were difficult with frequency, burning, and a few bouts of pouchitis that were resolved with cipro and food choices. After the first tricky year, everything settled down and I can eat what I like, but I always avoid nuts and seeds because they don't dissolve. I can even eat spicy food! The challenge now is getting my diabetes A1C glucose... [ more ]
Scott F While it’s true that carbs tend to be helpful during the post-op period, in the longer term many J-pouchers do much better on a low-carb diet, since that seems to reduce the impact of pouchitis. While it may take some exploring to find what works best for you, reducing the carbs tends to be very J-pouch-friendly. [ more ]
Trotts Hi, I thank you for all the information you have given me! I have done a lot of reading on low carbs, high fat, processed foods. I just brought Michael Pollan's book "FOOD RULES". I am learning a lot about lowering my A1C. I don't know is all of the things that I have been doing is going to work because the doctor said I have a 50% chance of getting type 2 diabetes because both parents had it in there 60's. I am 60. I am the type of person to over do it with exercise and diet. I am not... [ more ]
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J-Pouch ForumsGeneral Discussion
fistula seton
J JHendrix
n/a Well, in my case it did not stop the drainage. I don't understand all there is to know about fistulas ... I personally still don't know how the seton could stop all drainage since my fistula is connected to something that holds poo (the jpouch). My drainage only let up - almost completely - after the pouch was disconnected. No source of poo, no drainage. I'm guessing if I were reconnected (NOT going to happen), the drainage would resume. However, I think every fistula is different - widths,... [ more ]
JHendrix Thanks for your input N/a. I am correct in assuming though the seton would not stop the drainage of the stool from the pouch to where ever it ends? [ more ]
n/a JHendrix, I've had my 1st fistula with seton for 6+ years now. A newer one for about 5 months. My 1st one is termed an RV fistula, but it's not really, it comes out just below the V opening. Anyhoo, I was told by my CRS that a seton would allow the inside skin of the fistula to "heal", thus possibly helping a future repair attempt to be more successful. For me, apparently the healing didn't take place, but the draining did slow down quite a bit over time. I had planned on living with the... [ more ]
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J-Pouch ForumsGeneral Discussion
Digestion Question
NS Nora S.
Patricia Walker Yes after over 40 years of K pouch I now have this problem. I would imagine mine is due to adhesions. So painful as food passes. [ more ]
Nora S. If it's liquid or liquidy like yogurt, regardless of what's in it, no pain. If it's a food that has to be chewed, even if it's just one chew and swallow, then it's an issue. I also have multiple hernias, again. Not sure if those may be causing problems!! Just wondered if anyone had this happen. I've had the pouch for 2 years now. Thanks for the info you guys! I'll contact my Gastro. [ more ]
CTBarrister It sounds like it could be a partial obstruction. I would definitely go to see your GI or Pouch specialist. If this doesn’t pass some testing may be warranted. [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL for chronic pouchitis?
KR Katie R
CTBarrister It wasn’t effective for me and from what I have heard, it’s not effective for a large number of patients with very active pouchitis. It’s more effective at maintaining a remission achieved through antibiotic treatment. Because of the low success rates and high cost of treatment (unless insurance coverage can be obtained), it should be viewed skeptically. If you can get insurance coverage for most of the cost, it’s certainly worth a try. But for me it was a very expensive placebo. My various... [ more ]
Scott F I like it in Greek yogurt as breakfast and before dinner. [ more ]
Gary Ontario Can anyone recommend the most effective way to take VSL3? Time of day? With or without water or yogurt? Any other tips to improve its effectiveness? Because my insurer won't cover it I am only taking two sachets per day. [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch
IsbellaIsbella
Still Standing HI Isabella, I think your doing the right thing in finding a different doctor. You need someone with the heart of a teacher and who is knowledgeable about J-pouch issues. Unfortunately, we are different than the 'normal' colon people Have this new GI check you for possible pouchitis. It could be you're having issues due to this or another issue that medicine can help. That said, you might want to try to adjust when you eat certain foods and see if that helps to control output. I only use... [ more ]
Isbella Hi Bill thanks . My doctor is not very useful , she has no time for questions.She is always in a rush. She just love to do procedures I guess! I am looking for another doctor right now. We all had some issues but this is what we have to live with...Take care [ more ]
Isbella Thanks Scott. I have to look into that . My doctor and a pharmacist had advise me to take that but it added more bathroom trips. [ more ]
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J-Pouch ForumsHelp! Need advice now!
sweet potatoes and string beans
MIKEEYMIKEEY
Isbella I had sweet potatoes but I do not like it .It gives me gas but it binds too. string beans is good I do not have a problem with it and Kale. I boil them till it gets very soft , that way it helps in digestion. I just had them, they are my favorite..Maybe you should boil your string beans try it... I see nutritionist and they tol me that I have to take Vit D3 [ more ]
MIKEEY Thank you [ more ]
MIKEEY Thank you so much [ more ]
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J-Pouch ForumsOstomy & Skin
Silent pouches?????
heverhever
TE Marie I buy underwear for my appliance from Ostomy Secrets that is a Convatec Company. The are pricey but not too bad when they go on sale. They go on sale a lot. The just had a St. Patrick's day sale of 35% off. They have a shelf inside that holds the bag in place. There are also bag "covers" that I've purchased from several vendors on Etsy. If anyone else knows of anywhere that sells specific Stoma underwear let us know. [ more ]
UCorCrohns ❤️
Saff ALso check out this underwear.. the high waisted ones will help keep everything snug and not noisy. https://www.shethinx.com/ [ more ]
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J-Pouch ForumsOstomy & Skin
My first bowel obstruction!
LambiepieLambiepie
Paul G. I've had several blockages which are the most painful thing I've ever experienced. Some have passed on their own and a few have required hospitalization - NG tube, pain meds, vomitting and near surgery. So I've decided that from now on, should it ever happen again, as soon as I get that first wave of blockage pain to take myself right to the hospital instead of being an emergency patient. Of course, I now eat so carefully by eliminating roughage almost completely. My plan is to never have a... [ more ]
Lambiepie TE, if you do try it, soak it very well before cooking and just use a smattering of the quinoa among the rest of the food. I'm still a little spooked and just threw out the leftovers. My husband didn't even want to eat it! [ more ]
TE Marie Thanks for the heads up. I was thinking about trying it..... I'm glad it passed [ more ]
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J-Pouch ForumsGeneral Discussion
Banatrol
S SwollenColon
TCM I tried Banatrol a few months ago but it neither helped nor hurt. I am still trying to find the right dosage and frequency of Metamucil. So far, it seems to work the best for me but still far from perfect. It may be HOW I'm using it rather than what. I take a teaspoon of it mixed with 2 heaping spoons of applesauce first thing in the morning. I do pretty well then until late afternoon, so I may start taking an equal dose in the early afternoon to see if it helps. Or maybe stir it into my... [ more ]
ChelleH Any updates? I'm an RN and out nutritionist is launching this as a pilot for cdiff patients. I instantly thought it may benefit to prevent leakage. . [ more ]
TCM So here I am nearly 2 years later, investigating Banatrol. I changed primary care docs last week and he suggested I consider it. I asked my GI surgeon and she thought it is definitely worth trying. She advises I start with just Banatrol, then if I need to, add psyllium back to my daily routine. Banana flakes and fiber are apparently very different from each other, but possibly complementary. I have tried so many things without much success, so if a doc said to try standing on my head to and... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch with Diabetes (Metaformin)
GoldGold
Scott F I think it’s important to start with an understanding of exactly what’s wrong. Has your surgeon offered a diagnosis? Do you have (or can you find) a gastroenterologist who might know more than your surgeon about non-surgical explanations and options? If you are being told that it’s chronic refractory pouchitis, have treatment options other than Cipro and Flagyl been tried? Other antibiotics? Biologics? Probiotics? “Pouchitis” should be considered treatable until a careful and thorough... [ more ]
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J-Pouch ForumsHelp! Need advice now!
feeling in lower right abdomen years after j pouch surgery
V vince66
Jan Dollar Thanks, I hope it helps. Much of the time people just need reassuring. But be sure to see your doctor if the pain is persistent, increasing, or associated with other symptoms. Online advice is OK, but not a replacement for a physical exam. It is funny, but sometimes people worry about right lower quadrant pain being appendicitis, but that is one thing we do not have to worry about. The appendix comes out with the colon! Jan [ more ]
vince66 Ms Dollar, I have seen your name attached to posts many times over the years on this website. I am impressed w/ your medical background and the time you take to address people's questions and concerns and I am sure there are many others who feel the same way I do. Thanks for all your time and expertise. [ more ]
Jan Dollar Most likely it is just adhesions (internal scar tissues). They have been there since a few weeks post op. As long as the pain is minor and not constant, you do not need to worry about it. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
concerned about rv fistula
J JHendrix
JHendrix This is to update the above. I'm devastated. The repair was not successful. I've had stool draining into the vagina for the past four days. My surgeon is not in his office for another three days so I have no idea where I go from here. [ more ]
JHendrix As an update, I had a couple of stoma revisions and stayed with the diverting ileostomy for a year and 8 months. Investigation under anesthetic showed the r v fistula had healed and the j pouch was reattached 10 days ago. So for so good in terms of no rv fistula symptoms. [ more ]
Kara Fred Hi JHendrix- I am so sorry to hear of your rv fistula and all the associated problems. I can identify, but you have hit the extreme with your 'botched' surgery, new diagnosis and painful skin symptoms. I also had an rv fistula with flap surgery, plug surgery, seton placement and finally, an ileostomy coupled with biologics to heal the fistula. It did not work for me. I had my jpouch removed first. Then a urogynecologist did a different sort of flap repair and a colorectal surgeon did the... [ more ]
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J-Pouch ForumsGeneral Discussion
Is it possible to absorb nutrients from greens?
melissa111melissa111
skn69 I eat salads constantly...I just have ways of eating them...I tend to eat the chicken with the lettuce without the bread or carbs...that way I seem to digest things better. When I eat salad with both carbs and proteins I tend to have digestive difficulties... Other than that...no problems...I cannot tell you what I absorb or don't...just that I enjoy it and tend to eat for pleasure and not just for nutrition. Sharon [ more ]
CTBarrister Melissa- You do realize that nutrients are absorbed in the ileum whether you have a colon or not, right? What difference does not having a colon make? Your transit time of food through the ileum is what counts, and it is only marginally less with a J pouch than with a colon. Your colon functions to absorb water and break down the waste. Without the colon, the transit time through the ileum is only shortened to the extent of the shortening of the ileum for the J Pouch. And to the extent that... [ more ]
melissa111 I kind of get that, but I still wonder if it stays in long enough when you don't have a colon. [ more ]
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J-Pouch ForumsGeneral Discussion
SCD vs FODMAP?
M Momma
JHendrix When I try making dietary changes or a supplement, sometimes I think it's as much my way of feeling like I'm at least trying. It may just be my way of feeling hopeful. There is always the danger though of making ourselves crazy trying every suggestion we come across. (Whether it helps or not, I stick to a pretty low carb diet. Can't hurt. Might help?) [ more ]
Jan Dollar So here are my thoughts, for what they are worth. Sure, studies show an increase in IBD once regions become industrialized. So, maybe, yeah diet may play a part in triggering IBD in those who are genetically susceptible. On the other hand, there just does not seem to be a strong correlation that diet does much to induce or maintain remission, once IBD manifests. In regard to eating a “great” diet and being more healthy and fit goes, eating a varied diet with fresh, whole foods is healthy,... [ more ]
CTBarrister It definitely could help. It did for me. But, I don’t think the proper inquiry is which is the best diet as opposed to what principles from all of these diets are going to best benefit your son. scott, I am not accepting of the theory your post puts forth that having 2, 3 or 10 relatives with IBD shows it’s genetics and not diet. It’s the other way around. The genetics provide a disposition to IBD that is then realized when a certain type of diet is consumed. Until the industrial revolution... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
RV Fistula output?
L lixxie
lixxie Mucosal advancement flap surgery was done last Thursday. Pouch-side fix. Yesterday I had discharge, so it appears to have failed. But for 5 glorious days I was ‘normal’. Pretty devo. All this pain and time off work for nothing. Only to do it all again with a vag-side fix. Butt pain seems to have increased the last day or so, I guess related to failure. No fever or anything, so I guess I’ll just ride it out til post-op appointment in a couple of weeks. [ more ]
lixxie Another update. I'm scheduled for mucosal flap advancement surgery in the next month or so. Surgeons will wait til they are in there before deciding whether to do via pouch or vaginally. They said the success rate is 60% (or glass half empty, the failure rate is 40%. Sad face). Seton is fine. Awkward and sore for the first few weeks, but now it's just life. Vag output seems to be worse with the seton, which is worrying. I've read that if the fix fails, then the symptoms can be worse than... [ more ]
n/a My CR surgeon told me she would not consider any surgical "fixes" until a Seton had been in a while. Helps heal the inside skin. I agree, though, that a heads up would have been considerate. Quite an ordeal you've been through! I hope you can get this dealt with now. Keep us updated on what type of fix your surgeon is thinking about? [ more ]
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J-Pouch ForumsGeneral Discussion
How much straining is normal and can it cause strokes or heart attacks?
melissa111melissa111
CTBarrister Actually this is what killed Elvis Presley, straining on the toilet from constipation due to his addiction to prescription pain killers. He was found keeled over in front of the toilet seat, pants around ankles, dead. First of all, do not abuse pain killers. Second, if you do get constipation from taking bowel slowers, counteract it with natural laxatives, or reduce the bowel slowers. Last, don't strain. Not only may it cause a fatal cardiac event, but even if you have a healthy heart, you... [ more ]
Jan Dollar Anal manometry for the most part. This abstract lists the various tests. https://www.ncbi.nlm.nih.gov/pubmed/28259741 Jan [ more ]
melissa111 What does a doctor do to test your pelvic floor function? [ more ]
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J-Pouch ForumsGeneral Discussion
Weight loss on purpose 😀
lclassenlclassen
BillL First of all, congratulations on losing 33 pounds! That’s awesome! I had my single stage surgery in 2016, and went into the surgery already wanting to lose 20-30 pounds. The first 9 months afterward were torturous, with small intestine failure resulting in 10 days with an NG tube, constant trips to the bathroom, etc. Yet somehow, despite the feeling that everything that I ingested ran through me at lightening speed, I frustratingly gained 50 pounds in 6 months! I’m not sure how I managed to... [ more ]
lclassen Thanks Scott. I have been on Metamucil for 20 years, but went off of it for the diet. It's probably a good idea to start back on it. 😊 [ more ]
Scott F Have you tried adding soluble fiber (e.g. psyllium) to bulk up your stool? That might be all you need. I’d avoid the sugar-sweetened ones while on a weight loss regimen, but Konsyl original mixes up pretty well as long as you shake it rather than try to stir it. If you can’t stand the plain old psyllium, Metamucil makes an artificially sweetened one. [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy blockage/Cramps
NickPNickP
Mysticobra Yes. And 14 hours of excruciating pain to find out afterwards it was a twisted bowl. Temp ileo. Soooo.. while they were in there they decided to hook up my pouch after only two plus weeks and get rid of the ileo. Pouch never worked. Ended up having that removed and now with an end ileo.. Which is ok. But I must say. That blockage was the worst pain I have ever felt in my life. Never ever want that again! I had my pouch a little over two years and never had a blockage. Not even the feeling of... [ more ]
JHendrix NickP. \ Are you ok now? [ more ]
NickP Thank you for responding! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Success
Jmitch39Jmitch39
Jeffsmom Continued good luck! And success with your new body! Wonderful to,hear good news every now and then! [ more ]
Former Member Well with a Paramedic Fiancé and a Sisters who's a Nurse, you're in very capable hands. [ more ]
Jmitch39 No Home nurse required for me either and I prefer it that way. One less person for me to keep track of haha [ more ]
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J-Pouch ForumsGeneral Discussion
Turned out to be internal hemmeroid
B Bubba1028
Bubba1028 Thanks. Yea the burning goes away within a minute or so. I picked up some ointment today and have been using that. Thanks for the advice. [ more ]
Jan Dollar If the burn is constant. Stop using it. A little buring initially should be OK. Are you using suppositories, ointment, or cream? The suppositoriesand ointment are for internal use, but cream is more for extenal use. Jan [ more ]
Bubba1028 Been using prep H- it burns when I put it on the inside. Is that normal? [ more ]
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J-Pouch ForumsGeneral Discussion
Online support for Crohns
SaffSaff
Saff Thanks, yes i've only just recently had a crohns diagnosis but there are others who alike. I agree. [ more ]
Still Standing To be honest, I’ve gotten the most help here. I realize we are all different in how are bodies adapt with a Crohns diagnosis, but I have learned so much on this sight by reading how other people dealt with similar problems. The greatest feeling is that we’re not alone in this fight. Someone else has been there too😊 [ more ]
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J-Pouch ForumsGeneral Discussion
cold weather = I'm a zombie
AI_matrixAI_matrix
AI_matrix Sharon, that's perfect! I got more rice than a North Korean restaurant at hand. I eat boiled rice everyday. I did mange to get a heat blanket and its been working just fine. instead of a expensive hot tub I just fill my tub with hot water and bath in it . thanks for the input Sharon .. very thoughtful of you. allycat, I never been on a cruise before. With a world so crazy as it is I think I'll stay In where I'm at? But, maybe a trip to the south pacific would be nice? bluefire, I never been... [ more ]
Still Standing My family laughs because I’m always cold, even if they’re “boiling “. I blame the pouch, but notice it’s worse when I drink something cold. I’m thankful for my electric blanket, unless I forget to turn it off before I go to sleep, then I’m really really warm😊 [ more ]
BlueFlame Have you had blood work to check your levels? [ more ]
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J-Pouch ForumsGeneral Discussion
Members Here!
MysticobraMysticobra
Jan Dollar Thank you Richard! Without Bill J’s generous creation and sponsoring of this site, we would not be here. He saw the need after muddling through on his own from UC to j-pouch to k-pouch. This support group is different and is why 8 have stayed with it for so many years. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Manuka honeyb
MediMedi
ljk Hello, I suffer from chronic inflammation in my j-pouch. Where do you purchase this? Is it available at a health food store? Also, I am thinking that I may need a resection as well. I have had this pouch for 4 years now and its been nothing but trouble for me ever since. Actually about 2 years ago I went to Cleveland Ohio Clinic to reverse it. A doctor popped in and said how was my thyroid, well long story short I had a complete removal of it! I was told that It was so out of (high) I was... [ more ]
samantha1803 I am really looking forward to hearing your results. I'm from the US and live in NZ. I have never thought of using Manuka Honey as an alternative to antibiotics. I look forward to hearing how it goes for you! [ more ]
Library Lil' I have not ingested manuka honey, but I have used it topically. I recently had a j-pouch redo (January 2018) and my incision was not closing up properly. My WOCN recommended manuka honey for the incision. It closed up within a week. I think it's pretty amazing stuff. [ more ]
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J-Pouch ForumsGeneral Discussion
Bad cramping
J Jawesome
Jan Dollar Each person is different. You may have some internal scarring (adhesions) that causing recurring symptoms. If these episodes keep sending you to the hospital, it may require surgery to release the adhesions. In the meantime, you’ve gotten good advice. [ more ]
Bubba1028 Wow- 4 blockages- you’re a trooper! From my experience with blockages and from reading on here, this is what they suggest- lots of fluids, walk and try to get the gas out, beano or gas-ex, heating pad. Hope some of that helps. Given your history, you may want to give your doc a call. It could just be you’ve got a kink in your small intestine and the loop keeps kinking in the same spot. [ more ]
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J-Pouch ForumsHelp! Need advice now!
size of j pouch
Chad44Chad44
Jan Dollar Thanks Chad. I do think you all would be fine, though! Jan [ more ]
Chad44 Jan I don't know where we all would be be without you. Thanks isn' enough for all that you do for us all. I greatly appreciate your existence in this world! [ more ]
Jan Dollar Yes, Tulsamom, That is why the j-pouch is often referred to as a neo-rectum, not neo-colon. It is also whyyou should never expect or attempt to acheive function like a colon. Jan [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Is J-Pouch Surgery Worth it?
C Cole
Mike in MD Hi all, i registered some years back but I don’t believe I have ever posted - here’s my short story My experience- I’m happy with the surgery (1990 at 27, active male) - had UC along with IBD Arthritis. The surgical process was an ordeal but my UC had worsened to the point it made life hard. I fought it as long as possible 6-7 years but finally Md’s said colon had to go. Dec 1990 - colectomy, spring 1991 pouch creation, summer 1991 takedown. Other than a trip back to the hospital that year... [ more ]
njpublish I had UC for 20 years and got a jpouch 10 years ago and can't tell you how pleased I have been post surgery. No more running to the bathroom concerns, no cancer concern. I'm not on this board very much but saw your post and wanted to give some positive feedback. One of the best decisions I ever made. [ more ]
CTBarrister I have had a J Pouch almost 26 years after having UC for 20 years, and have battled pouchitis for almost 23 years. Pouchitis is kind of a different animal and different disease than UC. The pain I had with UC was searing and severe and the UC inflammation riddled my colon to the point where it was dissolving when taken out. This is not to mention that dysplasia has been found in the colon 9 months earlier and I had been asked to lose weight in preparation for surgery in the interim. My... [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Taking lomotil for years
crcr
cr Ally cat ! You’ve been thru the wringer!!!!!! I’ve had pouchitis a few times but not much lately. I added exercise to my routine and that must be what helps me. Then I go off proper diet and eat chocolate!i pay for it so back to yougurt, bananas, blueberries . I tolerate Raisin Bran and oatmeal. Good luck Allycat, after so much trouble [ more ]
AllyKat 3-4 count your blessings [ more ]
cr You are already doing better than when I had mine. Mainly cuz u don’t have to see surgeon for a year. That’s great! Hoping it will continue so well! Keep it up. It is worth it. Guess we really don’t need to hang on those colons!!!🤣 [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy Reversal
NickPNickP
Mariiuccia Hi Nick I had my ileostomy for 5 years and then had my jpouch redo and reversed! Had some issues such as ileus where intestine paralyzed. After 5 months of hospitalization with A few medical challenges it has now been close to 3 years with my reversal! Need to watch my food intake but all is good! Wish you luck ! What was the reason for your 2 year wait! Mine was abscesses at Jpouch! If you have any questions I’ll be happy to answer them ! [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Bidets
C capper
Former Member ❤️
maggiemarsupial Before I bought the bidet toilet seat I just used an old squirt bottle and it worked quite well. It just needs to be soft enough to get a good spray going. Has anyone ever used perineal spray for their sore butt? I just saw some for new moms and thought it might be a good thing for us. It is basically just witch hazel and essential oils, easy enough to make ones self. [ more ]
Curly I am a renter and didn't want to bother with trying to install an actual bidet, so I got a very inexpensive "travel bidet" plastic squeeze bottle with a spout, via Amazon, and find it very helpful. It leaks a bit from the bottom and that's no problem at home, I just keep it on the floor next to the toilet, but I don't take it for travel - it hasn't been a problem. The Charmin Freshmates sound like a good idea for travel though - will check it out. Anyway, I recommend the squeeze bottle as a... [ more ]
See all 13 replies...

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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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