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J-Pouch ForumsHelp! Need advice now!
Stricture help
L lauren972
Jan Dollar If you are talking about a stricture at your ileostomy reconnection, then a squatty potty will not help that at all, as it is well above the pouch. Squatting is for emptying the rectum. Massage is your best bet, along with avoiding roughage and high fiber. It may not be possible to dilate this, but they can resect the stricture or do a stricturoplasty. Jan [ more ]
lauren972 Thank you. I'm not looking to treat my stricture but appreciate you telling me that. Because of its location, nothing can be done about it. Just looking for ways to help out. Haunts me too! [ more ]
Jan Dollar Squatting will help increase internal pressure, but that does not prevent or treat the stricture. It can help with evacuating the pouch, but at the risk of straining to the point of causing damage (prolapse). So, be careful! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Nutritional status
sharon O.sharon O.
Jan Dollar I have been rotating Cipro, Flayl and Rifaximin. The Rifaximin does not work as well as the others, so I combine it with Pepto Bismol. When things were at their worst my "go-to," Flagyl, was not working very well, even at higher doses. So we combined Cipro and Flagyl for 10-14 days, then I started the rotation. Don't forget, I also am on Imuran and Remicade now. Hoping to get off the antibiotics after induction. There is hope, but for some, pouch failure is the result with pouch removal. Jan [ more ]
sharon O. Yes....you got it Jan. Doc says I have chronic pouchitis but I'm not responding to antibiotics�� What antibiotics did you take? We've tried the usual flagyl but didn't work this time. I've been on another antibiotic for sinus issues recently too. Before that for recurring UTIs. Glad someone is actually talking to me about being malnourished finally though....doc is really trying☺️ [ more ]
Jan Dollar You've probably investigated this, but if not, consider pouchitis. I had a run of about 6-10 months of all over abdominal pain, gas, cramping, belching, etc.. I would have sworn my gallbladder was going to explode. Rashes and increased arthritis too. All my labs looked good and the only thing that came up was pouchitis when I was scoped. Antibiotics put me into remission, more or less. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
First j pouch dilation
N nettiemoore
Scott F Nettie, it sounds like the risks of treatment are less than the risks of leaving it alone. A careful dilation is pretty low-risk. While it's worth asking your doctor what they are, for awareness, for me it's a bit like not dwelling on getting hit by a car every time I cross the street. You shouldn't have to go uninsured. You can get insurance at healthcare.gov through the Affordable Care Act. You should be eligible for a special enrollment period, and you should be eligible for subsidies to... [ more ]
nettiemoore My surgeon says that my anastomosis is too narrow and that dilating it could PREVENT nighttime accidents because maybe I'm not emptying 100% when I go. I don't think it's urgent or an emergency, but I did mention to him that I am due to lose my insurance next month. I am not sure how long I will be without it and he said that he absolutely thinks I should be dilated before then. I'm just worried there will be side effects that I am unaware of. I've tried reading up on it but have been having... [ more ]
Angie Wilson I agree - it's a lot of trouble...but if you can, see if you can either get another opinion or just ask to wait. Or just wait...keep checking in on yourself - and see how it goes. I say this without knowing the reasons doc gives as to why this procedure is so necessary..is it an emergency? why the urgency? etc. etc. I agree with Scott. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis and Continuing diarhea
W WGM_1950
WGM_1950 Thanks Scott F, I will try benefiber 2x a day. [ more ]
Scott F Soluble fiber will let you know very quickly if it's helping, certainly within a couple of days. It's just mixing with the stool and changing the texture and thickness. I take a dose of it as the package directions suggest with meals twice a day (breakfast and dinner), which is exactly what my surgeon suggested 14 years ago. Some people have been told by their doctors to mix it with less water, but I disagree with that advice. [ more ]
WGM_1950 I bought some benefiber. And metamucil. how many doses of benefiber should I take? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
How much do you expect your gyno to know about GI related issues?
Gutless WondergirlGutless Wondergirl
Gutless Wondergirl Thanks. I tried the heel thing but don't have pain now so I will do it again if pain returns. Yes, I will definitely ask about the 'interview' consultation in the future for new doctors. [ more ]
LC Ovarian cysts can cause deep pelvic pain. I had a few as a teenager and they felt like a deep stabbing pain in my pelvis especially if I bounced down on my heels (that is how my doctor identified it). It could be that you are having cyst issues and the fact that you have a pouch is unrelated. I had a friend who had to have surgery for hers but she didn't need a hysterectomy or anything that major. You could always call and ask about free consultations. Pediatricians do them routinely so I... [ more ]
Gutless Wondergirl Thank you all for your great comments and support. I keep finding myself side-tracked looking things up mentioned in the above responses like 'prostaglandins' and 'hormal birth control and its role in inflammation' instead of responding to your caring, insightful and helpful responses. Thank you all! Do any of you ask for free consultations prior to seeing a doctor? It would be so very helpful to just meet with them and see if they would be a good fit rather than paying for meaningless exams... [ more ]
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J-Pouch ForumsK-Pouch Korner
Input on leaking issues
Kara FredKara Fred
Kara Fred Thanks so much - I met with Dr. Kiran before he left Clinic. I really liked him so it's good to hear how happy patients are with him. [ more ]
MJ0917 I used to buy Tegaderm to contain mucus but that was getting way too expensive. So I went to Walmart and found this Mirasorb gauze sponges made by Johnson & Johnson. This along with Nexcare waterproof first aid tape I found more palatable than spending $30 per box on Tegaderm. The sponges are huge that you could cut them into 4 smaller pieces. One small piece can last me 4-6hrs till it's fully saturated. I like the Nexcare first aid tape because it's flexible, hasn't peeled off once, and... [ more ]
JLH randers how did you valve get injured? is injured mean the same thing as slipped valve? i've just seen dr. kiran at columbia for my routine maintenance and am very pleased with him. j [ more ]
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J-Pouch ForumsGeneral Discussion
Advice? and Questions, Pouchitis? Tooth Infections? Antibiotics etc.
Clever1Clever1
Clever1 So what is Diversion Pouchitis? and is there a real definition of pouchitis? [ more ]
Jan Dollar Yeah, there is always a little "something" left behind, otherwise there isn't much of anything to sew to. Plus, with the mucosectomy, it is pretty difficult to get every single cell and patch of mucosal tissue out. Jan [ more ]
Pouchomarx I would suspect diversion pouchitis as well. I had it and Shen got it to stop after a scope with one of his tricks. When I had my scope a few weeks ago with Shen, I asked him since I had a handsewn mucousectomy if I technically did not have a cuff any longer, and he kind of smiled and said I do have a cuff sort of... where the intestine is sewed into the sphincter the connection site can still be considered a cuff per say. interesting [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Iron Supplements
chantalwordchantalword
chantalword Thanks for the reply. Both my iron stores and my hemoglobin are low. I should have been more specific, I have iron deficiency anemia. I had no idea there was a test for absorption I'm going to add that to my list of things to ask the doctor. I've never been to a hematologist, although I've asked my GI and GP, they both said I didn't need to. I have tried liquid iron, 2 different kinds, but I took it daily, it might be worth a shot to try again but not taking it daily. How often did the... [ more ]
boy's mom I finally took my son to a hematologist. He said low iron numbers do not matter, only your hemoglobin and MCV . Also some people cannot absorb iron orally so it might be worth doing a test to see if you can. He also suggested liquid iron - NOT Taken daily because otherwise your liver will store too much iron. Further there is some evidence that oral iron can have negative impacts , especially for those with IBD. [ more ]
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J-Pouch ForumsGeneral Discussion
Oil of Oregano?
SpookySpooky
boy's mom My son takes it in pill form. He recently started. He is taking it to deal with some bacteria issues. [ more ]
Spooky Thanks! I actually picked up a dropper on my way home last night. You are right, that is potent stuff. It buuuurns. LOL [ more ]
CTBarrister There is another thread on this subject here with a lot of info: https://www.j-pouch.org/topic/o...eks-with-oregano-oil [ more ]
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J-Pouch ForumsGeneral Discussion
LEAKAGE PADS
PouchomarxPouchomarx
Jan Dollar Another consideration about cotton balls and make-up rounds is that they are not flushable. They can snag on roots or whatever in your waste line and over time cause problems. If you have a septic system, a real no-no. B-Sure pads are flushable. Jan [ more ]
Mysticobra You can find B-sure pads on eBay for a better price. Amazon will have them too. Richard. [ more ]
JJA I tried the B-sures, but way too expensive. Also used the makeup rounds. For years now, though, I use about half a large cotton ball. Originally externally, but found it works much better to tuck it just up inside the hole. Prevents external skin irritation. It generally just comes out when I use the bathroom, although if for some reason it doesn't, I just use a finger to dislodge it and replace with a new partial cotton ball after using the restroom. Works AMAZINGLY! [ more ]
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J-Pouch ForumsGeneral Discussion
Esophageal and Rectal/Anal Candida/Yeast
J JoVic
JoVic That's great news! It's amazing how this all affects pouch function. Glad you are feeling better! [ more ]
ks1905 They added Clotrimazole lozenges 5 times a day. Within 12 hours my cough is gone and my pouch is working much better. My energy is back and I'm feeling better. I am still taking Fluconozole once a day. [ more ]
JoVic KS, what are your other treatment options? [ more ]
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J-Pouch ForumsHelp! Need advice now!
In terrible pain post-dialation
BM best mommy
Jan Dollar Sounds like fissure to me too, but if they are absolutely positive it is ruled out, there must be something else. Something is causing painful sphincter spasms. There have been a few here who developed chronic rectal pain from presumed nerve entrapment in scar tissue. Other options to ask about are B&O suppositories (belladonna and opium) and nerve blocks. An EUA (examination under anesthesia) is also in order. This sounds pretty intolerable. Jan [ more ]
Scott F This sure sounds like an anal fissure. What did the surgeon do to rule it out? In the meantime, try to keep the stool consistency about like pudding, neither formed nor liquid. Have sitz baths been tried? [ more ]
Former Member Although an Anal fissure has been ruled out, I can't help but believe that's what it is. From what you've described, it's what I experienced just after my takedown; I had the urge to pass what felt like a golf ball, but there was nothing there; I was in so much pain, it was excruciating. When your daughter says the pain is low down, I assume she is referring to the rectal area; I must admit, if someone asked me at the time, it would be very difficult to describe. At the time my Doctors... [ more ]
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J-Pouch ForumsGeneral Discussion
.....
Randers.USARanders.USA
Jan Dollar I get mine by prescription, so it would not affect me. But, I can see how making it a "behind the counter" drug would make it a hassle (limiting the amount, having to register your ID, and sign for it). Jan [ more ]
Scott F It sounds like it might just move behind the counter, like Sudafed. That wouldn't be such a big deal, I think. [ more ]
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J-Pouch ForumsGeneral Discussion
Working as an Rn
MloRNMloRN
Jan Dollar Scott, I really don't have any great ideas. I tried avoiding antibiotics and it just did not work for me. But rotating antibiotics has proven effective for me. Still, my GI was not satisfied with controlling symptoms alone, since I still had deep, chronic ulcers while taking them. I was even on various biologics at the time. This is the reason for the move to Remicade with Imuran recently. So, we will see how this works out. Jan [ more ]
Scott F Jan, I agree that Flagyl would almost never be used to treat or prevent C diff any more, except in unusual cases. I think it's still a reasonable pouchitis treatment for someone with prior C diff, though. The idea of "avoiding antibiotics" seems too general to me. Do you have a different idea? [ more ]
rachelraven I had my surgery the year I started nursing school. Four months after takedown, I started full time school and a 20 hour part time job. I've worked all sorts of shifts since, and never really had issues at work. I work full time critical care (36-40 hour weeks, 12 hour days). I may need to hit the bathroom about 4-5 times max in my day, but that's about it. However, I've had a relatively decent run with my pouch over the years, and have never needed thickeners or things to slow me down I'm... [ more ]
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J-Pouch ForumsGeneral Discussion
ensure drinks to gain weight?
PouchomarxPouchomarx
suebear You're brave! I don't know of anyone who has consumed it like that! It's meant to be added to food. Perhaps something like oatmeal; because you can add brown sugar and milk to help dilute the taste. Or soup? Sue [ more ]
Pouchomarx Received my Benecalorie last night. I drank it as a shot straight and it was the worst tasting thing I have every had..lol.. it was thick and chalky and actually felt like my mouth was foaming and almost threw up..lol. it says to add to food so I need to figure out what to add it to. Any suggestions? thought about just adding it to my ensure active drink? I cant see adding it to a juice or applesauce. but if I have to drink it straight, I will. Ive had worse in my mouth before..lol [ more ]
Angie Wilson Great information - thanks for sharing - I guess I should be putting ensure in my coffee. I knew it was not great, but sort of thought "better than nothing" - but I guess I need to work harder to find something. I have a hard time eating so many thing - and ensure - about 1/3 a bottle in my coffee never did bother me. Coffee is my "go to" - it's what makes my GI run - it helps food go through me and not get stuck. Yes, it goes through too fast - but without it - well, then I am miserable and... [ more ]
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J-Pouch ForumsK-Pouch Korner
Possible k pouch
Ashley22Ashley22
Randers.USA Had J Pouch Initially, was always a problem...had it removed...could not live way was/am used to with the ileo, went for K pouch surgery...it was done and I loved it so much better than a j pouch, imo. It is a major operation, you have to adjust and take care of it, but if all goes well, in time you will be happy you had it..then again, many people love the j pouch and the standard ileostomy...for me personally, a well functioning, well built k pouch was a great option. Just try and do a lot... [ more ]
skn69 Hi Ashley, I have had my k pouch for 36+yrs...it has had excellent years, some speed bumps due to other health problems, a few mechanical difficulties due to my own personal stupidity (always, I repeat, always use lube!) and a couple of age related issues. But I am a special case. That said, I Have Lived! I lived as a shut-in pre-kpouch...incontinent, sick, miserable and unable to imagine a life outside of a bathroom. The k pouch gave me back me. Freedom, life, liberty and the ability to... [ more ]
BillV Ashley, I agree with what both Kara and JLH have written. I have a BCIR which is similar to the k pouch in function, but constructed a bit differently. Both procedures have a high success rate and high user satisfaction. Most people with well-functioning pouches do not visit these forums, so don’t be discouraged by those with problems who come here for suggestions and support. I have had excellent results with my BCIR during its 3 year life. I found it easy to insert the catheter after the... [ more ]
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J-Pouch ForumsGeneral Discussion
Citrucel question??
PouchomarxPouchomarx
Jan Dollar You don't know until you try it. Since you have it, you may as well use it and see if it is helpful for you. Jan [ more ]
Angie Wilson I used it years ago and it helped slow things down. I was told to use it differently than package directions - put in a spoonful and added much less water. I did that for about 5 years....slowly, my body adapted and I don't use it or anything to "slow things down" anymore. I've had a couple of obstructions....don't want to risk it. So, I just east less often and stay near the bathroom. I am fortunate in that I quit my job and can stay home or be home off and on - I like privacy. I really... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-pouch and pregnancy
Holliekay88Holliekay88
yogijano Hi Hollie, Me and my husband have been trying to conceive for the last year and here is what I learned from all of the doctors I have been seeing. Thought I would share. Manage and get pouchitis under control before getting pregnant. I don't know if you ever have pouchitis but I have chronic pouchitis and my GI said it is common if you start pregnancy with pouchitis that you will continue to have pouchitis throughout the pregnancy. This is hard for a few reasons it's harder to manage because... [ more ]
Holliekay88 Thanks for all the replies! My husband and I are really excited about trying so I'm going to talk to my doctors soon. I didn't think I'd get too many anwers, so thanks y'all! I feel better about it! [ more ]
canlafre I had 2 pregnancies after my pouch. Both babies were delivered via c section. A planned week early. Both babies were / are quite healthy. The only thing I found different in each pregnancy that really stood out was the I was more sensitive to contractions weeks before their births. I could feel them a lot stronger.so I had many trips to labor and delivery to check. It was a good thing I worked at the hospital so I just went upstairs. I would not let your pouch stop you having kids. They are... [ more ]
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J-Pouch ForumsGeneral Discussion
Aleve
Rosie128Rosie128
Rosie128 Thanks Jan! I was afraid of that! Lol. I can tolerate Motrin in small doses, but nervous to rock the boat with a jump to Aleve because it is a different drug. Hoping to get back on prescription Migraine meds soon, but at the moment I only have OTC available to me. I feel like my life is constantly trying to find that balance and sometimes doing well and other times failing miserably! Lol [ more ]
Jan Dollar It is an individual thing. Some with UC are more sensitive to NSAIDs and it quickly causes pouchitis. Others tolerate it pretty well. For only occasional use, it should be OK, as long as you don't have a known tendency for it to cause IBD flares. I was able to take high dose NSAIDs for years before it caused gut problems. Just be aware that at any time you can develop side effects and have to stop taking them. It is all about risk vs. benefit, and finding that balance. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody trying Viberzi (eluxadoline)?
W WhiskeyAce
TinCan I experimented with it a couple of months ago on the advice of my PCP, but did not find it to be particularly helpful for me. It made me feel quite drowsy and somewhat constipated. But you may still want to give it a try as our (pouch people) response to drugs seem so individualistic. One thing to consider is the cost. It was still so new that it was not covered by my insurance plan. Fortunately my PCP had a coupon good for a free first prescription - otherwise it would have cost mega-dollars. [ more ]
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J-Pouch ForumsGeneral Discussion
What kind of symptoms does your body go through when rejecting a colon from a colon transplant?
FM Former Member
CTBarrister Yes, if your liver fails and you can't get another one, it's all over, whereas colons are quite expendable. I read that liver transplants have a 5 year survival rate of about 78%, which isn't terribly high. Among the 22% who didn't make it 5 years was Baseball Hall of Famer Mickey Mantle, who made it only a few months with his transplanted liver. [ more ]
Jan Dollar The difference is that you cannot live without a functioning liver. The same is not true for the colon. Jan [ more ]
Jeffsmom Maybe they would do a transplant for the same reason they do transplants on people with PSC. That autoimmune as well and they do transplants all the time. Sometimes it works, some times, not .... [ more ]
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J-Pouch ForumsGeneral Discussion
New to this Forum & feeling totally blindsided by what I'm learning...HELP!?
FaithHopeLoveFaithHopeLove
Angie Wilson I am so glad you found us and so, so sorry you have been through the wringer...and then some. I think Scott and Jan did an excellent job of summing up a starting point for you. I have had my j pouch for 30 years - and I did not start in this forum until about a year ago - I have found it the most wonderful thing I have done for myself in ...ages and ages. You will find kind, wonderful people who will just give you support - and who may think of something you have not regarding what you are... [ more ]
Marthap Hello faithhopelove My first time posting. I read your story and feel for you my dear. I have had the j pouch for 21 yrs. I have had numerous problems, ( nothing like yours). I had my j pouch built at OHSU in Portland Or. My Dr. Name was Karen Deveney. She was wonderful for me. Hope this helps. mp [ more ]
aka KNKLHEAD I am very confident you're not going to get rude or mean comments on this board, so you've come to a good place. I can't hold a candle to what Jan and Scott have offered -- they're very knowledgeable, along with others here too! I'll keep it at "Welcome!" Best wishes. I am very sorry for your issues, but better days ahead! [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic headaches and neck and joint pain
C chris7
Carlyh_5 It’s true that joint pain is one of biggest problem these days. Most of people have been suffering from this terrible pain. I just got to know that acupuncture is a great way to treat joint pain. Actually my mom got this therapy at an acupuncture clinic clinic and has much relief now. [ more ]
Branchy Hy everyone,I have same problems for 5 month. My takedown was on 28th September last year and I was doing well. Start takeing probiotics and multivitamines and minerals from first day. Than at the end of the year arthritis get me. Since than I am in hell. It walks around - right side knee,hip,shoulder and now neck,jaw and ear. Some days I can barrely wake up and stand. I am on the edge. Is there end??? [ more ]
diana schm I agree the gastros that we have seen don't seem very compassionate at all. One made me feel that my son was playing me with all of his sicknesses. I am going to see if an immunologist can help. I hate feeling as though I need to be embarrassed about him missing so much school. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ng tube in and how long before I feel better
S SandrineV
Jan Dollar Glad to hear the gates are open now. Some people are slower to start than others. It varies. Fun begins! Jan [ more ]
bob p 3 bms today! no walk in the park though. should be getting out of here tomorrow. nice to know the plumbing is working. [ more ]
bob p I had the colectomy 6 months ago and just had a successful takedown 10 days ago. I've been in the hospital for 10 days and still haven't bm. last week I had an ng put in for my distension, hiccups and vomiting. since then i've had some vomiting 1 to 3 times a day, but they wouldn't remove the ng (7 days) until I sneezed and it came out. today is the best I've felt so far and got close to a bm a few times, just waiting for that. they know I won't let them put the ng back in, unless I get sick... [ more ]
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J-Pouch ForumsGeneral Discussion
Extended release drugs
MO Mary O
Jan Dollar Essentially, it all depends on your transit time. Most extended release tablets will release the second dose 4-6 hours after you take it. The first dose is immediate release. Jan [ more ]
skn69 Thanks Mary, I had a long conversation with my pharmacist and he informed me that the meds that can be cut in half (they have a line through the middle) can be quartered too...so I quarter some of them but I do avoid most like the plague...his rule? If you take the pill and it comes out whole on the other end, then you are not absorbing what you need from it. When I can I get the normal kind or peel the gastro-resistant film off of them. Sharon [ more ]
Mary O Thanks for all of the responses. Just FYI, I messaged my gastroenterologist as well, and here is her response (based specifically on my situation): "Overall, there's a possibility of malabsorption of some vitamins or minerals, like vitamin b12 or Vitamin D. You still have an extensive amount of small bowel remaining, so there shouldn't be an issue with malabsorption." "...all your medications should have no issues with absorption, including the extended release medications." Sharon, for what... [ more ]
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J-Pouch ForumsGeneral Discussion
Local j-pouch support group
NoGutNoGut
deweyj ask your ostomy nurse if she would help facilitate one. to be candid being in IA, I am not sure if the CCFA has a local chapter, otherwise you could ask there. [ more ]
Mary O I seem to recall that the hospital with which my gastroenterologist is affiliated has a support group, but I live in a large city (Chicago). [ more ]
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J-Pouch ForumsOstomy & Skin
I'm scared, tentative surgical date for j-pouch removal
TE MarieTE Marie
Angie Wilson Keep it up TE!! So proud of you - I'm glad to hear from you. Why we have to wait so long to get the anti biotic or whatever it is drives me nuts - but then I realize it's "a system" and there are many others in line calling a doctor, etc. I remember years ago - when I had my pouch surgery - things were so different - I got instant help for anything. One call to doctor's nurse and I got help - well, that was 1987 - and healthcare was so different then. I feel like now doctors (many of them)... [ more ]
TE Marie I forgot to post that the day after the Urology NP suggested P.T. her office called me saying that I did have a bladder infection and she'd called in an antibiotic prescription. I finished taking it a few days ago and hope my recovery continues. A few steps forward then one backward..... [ more ]
Angie Wilson Yep - one day at a time. OH- how the mind wants to figure out the future - especially when one is ill, etc. Hang in there, TE! [ more ]
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J-Pouch ForumsGeneral Discussion
anybody deal with this one - it's new to me...
AW Angie Wilson
Angie Wilson Thanks - I am trying to drink tons of propel, water, powerade, gaterade, etc. - doing all I know to do. I am still functioning - just not well....I know to go to the ER if I need IV fluids - watched my Dad do this many times as he aged with the pouch. I just want them to figure this out and please God let me be able to take something to fix it. Now, I wait. Thanks for your advice - really, when you feel this bad, it just helps that anyone "out there" answers your question - it makes me feel... [ more ]
Former Member Don't know if this has already been mentioned and I failed to notice but diarrhea can lead to a loss of electrolytes and dehydration; this is probably why you're feeling run down. [ more ]
Angie Wilson Good for you - relax and surf web etc. - my gosh do you deserve it for all you do for us out here in pouch land. Take care, Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pooping myself at night after pouchoscopy
PouchomarxPouchomarx
Angie Wilson So glad last 2 nights have been good. Hope things keep improving for you. [ more ]
Pouchomarx I have been good past 2 nights. I popped some immodium and tried to eat earlier in the evening and no accidents.. thanks [ more ]
Angie Wilson Well, I can't say for sure -but sometimes, just the fact that you had the scope can then cause inflammation and upset your muscles. It surely did mine on several occasions. And, it resolved itself within about a week. I hope yours does too. I know you are fed up. [ more ]
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J-Pouch ForumsGeneral Discussion
Question?
Mema 1Mema 1
Mema 1 I don't think so TE Marie, I don't have any symptoms of cuffitis. It hasn't happened again, so I'm hoping that it was just an internal hemorroid. [ more ]
TE Marie Can it be caused by cuffitis? I had some toilet bowls full of blood caused by it [ more ]
Jan Dollar Fiber maybe? The link I posted had the usual suggestions. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Marshmellow
P Pkitty
Francesca I've had a j pouche for a year now and have noticed when I get tired towards the end of the day I tend to get diarrhea. If I take three or four marshmallows before a meals it really helps to slow things down. I was told about marshmallows by the stomal therapist. They work for me and a good alternative to Lomitil (gastro stop) [ more ]
Pkitty Yeah I just don't understand how it works because marshmallows are sweet and usually sugar speeds up the GI track? [ more ]
Jeff D As Grace mentioned, when I had the temp ileo, I would eat a handful of marshmallows 10-15 minutes before I had to change the bag. It worked very effectively. The same strategy hasn't worked to slow digestion now that I have a jpouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
New symptoms
ktakta
Donna B KTA: I have recently (last week) had the same sx as you -- I've had my pouch for 11 years and have mostly done really well. I weaned off rifaximin about 3 years ago. But over the past week I've had a flare I think. I don't even have a regular GI anymore. I just returned from Urgent Care and got mesalamine suppositories. Cipro makes me a bit crazy. I have tons of rifaximin left (expired but probably still good). Good luck! Donna [ more ]
Scott F KTA, Flagyl is just an example, though a common one. I take a pretty low dose, which keeps side effects to a minimum, but it's just based on Shen's more general recommendation that combination antibiotics can work when single ones don't. Good luck! [ more ]
canlafre Have you tried steroids? Not awful prednisone but Endocort? I was having similar issues and started it a couple weeks ago. [ more ]
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J-Pouch ForumsGeneral Discussion
Several pouch sinuses found
J jeane
Jan Dollar I think you reduce your risk by having the ostomy for a few months. It can help restore your health (both physical and mental) before taking on a major repair. While I've never been to the Cleveland Clinic, I've read countless stories of how Drs. Shen and Remzi (and Fazio) have been able to solve unsolvable pouch problems. There have been a few who have been unhappy with their care, but that happens everywhere. One thing for sure, you could use a break from butt issues! Jan [ more ]
jeane Thanks Jan. So far of all the medical doctors I have seen in five years, combined with all my independent research on my issues, you have described this best. The members on this site are so lucky to have you as an active member offering continual advice and support It's very sad. I honestly don't think I have Crohn's and considering how healthy I am otherwise, I should have been a perfect candidate for this surgery. I should have suspected something was very wrong on my scope soon after... [ more ]
Jan Dollar No leaks mean that there are no leaks at this time. Fistulas and sinuses are simply leaks that become little tunnels that are lined with epithelial tissue. It is the body's way of preventing widespread infection. Essentially, they become part of the GI tract, and this is why the body does not sense them as something to heal. If fecal material becomes trapped in them, it gets infected and causes a lot of symptoms. Sometimes they can open the sinus up to become part of the pouch. But, with the... [ more ]
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J-Pouch ForumsGeneral Discussion
Fistulas
C canlafre
Jeffsmom Some how you have to learn to say no. It's extremely difficult for me as well, but think of it this way. If you don't take care of you, you won't b able to be there for your kids in a good way. Your 11 year old is old enough to help with the little one and around the house too. It's ok if the laundry doesn't get done or the kids don't load the dishwasher the "right" way. The house will get messy but someone will get to it. Trust me, I can make Martha Stewart look like a sane person! I'm very... [ more ]
canlafre Saying no is hard, so I will find a compromise somewhere. [ more ]
Jan Dollar Ugh! Be sure to get your rest. Learn to say no. Hard, I know, when you are chief cook and bottle washer (AKA, Supermom)! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch to ileostomy
J JMT
JMT Thanks Richard That helps [ more ]
Mysticobra JMT. I do hope you come to a good conclusion. 14 years with the pouch is a long time and will certainly be a problem. From what I have read so far the longer you have it the more scarring and adhesions occur. Mine was only in for a bit over two years and came right out. As I have said in other posts. I had immediate relief and success. I did not expect it. As you said I expected more suffering. I was wrong. Took awhile of course because it is another major surgery. But it worked out. I now... [ more ]
JMT Thanks Jan & Scot. Yeah that's my fear. Going through surgery and still suffering, [ more ]
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J-Pouch ForumsGeneral Discussion
Shen scope today....
PouchomarxPouchomarx
Angie Wilson glad to hear your good news, Poucho. I know you are so relieved. [ more ]
Jan Dollar Very good news! Of course we all should avoid straining. For all I know, all j-pouches have a bit of weakness in this way, just like all pouches have a small level of inflammation. Hopefully you can now move on and accept some imperfections without worrying that they will snowball into terrible complications! Jan [ more ]
Pouchomarx Spoke with both Shen and Remzi this morning and was told the prolapse is very mild and will have similar symptoms to hemorrhoids and only thing I can do is avoid excessive straining. The pouchoscopy was normal and well structured. Remzi stated that this is the last thing I need to worry about and to move on and go enjoy life now!!.. I feel so much better after this conversation.. [ more ]
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J-Pouch ForumsGeneral Discussion
stupid question?
PouchomarxPouchomarx
Pouchomarx According to Dr Shen, even though I had a handsewn mucousectomy with my pouch redo, I can still get inflammation there at the connection site. Similar to cuffitis, but not really a cuff there. [ more ]
Scott F Well, body parts that have been removed tend not to get diseases. OTOH, we all still have plenty of body parts left. I'd recommend enjoying them while they are working. There is a wonderful repeated line in the movie Bridge of Spies. An old spy keeps getting asked "aren't you worried about <the latest threat>?" His taciturn reply: "Would it help?" [ more ]
jeane If pouch is hand seen they take out tectal cuff so I would say you should not get cuffitis. [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber / Nutrition Question
KPKP
KP Thanks Jan! I'll be picking up some pepto this evening. [ more ]
Jan Dollar Gee, I think if you can easily get a finger in there, you are not strictured. When my pouchitis is bad, I have trouble emptying. By the way, I also note less than stellar results when on XIfaxin, and my GI wants me to use it more than the Cipro or Flagyl. So, when I am on it, I also take 1 Pepto Bismol caplet (generic from Walmart is cheap) 3 times day. That combination seems to improve the Xifaxin efficacy. Jan [ more ]
KP Thanks for the responses! It's good to hear that it's possible to eat pretty much as one would like. I don't feel real confident eating whatever yet. Antibiotics are helping. I've been on them for around 3 months taking 2-3 day breaks every few weeks to see if I can stop taking them. Once off of my meds, Pouchitis roars back in around 24 hours. Mostly Cipro, some Tindamax and currently Xifaxin. Real gassy on the Xifaxin, though I can tell it's doing something. On a side note, is it possible... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch revsion
tftf
tf ok , I c what ur saying. Thanks again. [ more ]
Scott F TF, I just noticed that you wrote "I see on here some of u have many surgeries but not a lot of success." I meant that the folks who do have a lot of success typically don't post here, so things look pretty bleak if you count up how well people who post here are doing. [ more ]
tf What do u mean by the first 2 lines of ur reply? [ more ]
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J-Pouch ForumsGeneral Discussion
Any successes with fistulas out there?
L LC
n/a Oops, mine isn't perianal, it's perineal. The docs call it pouch-vaginal but it does not go through vag. Yes, in my humble opinion, it feels quite a bit better to have a seton than it did to have abscessing/popping. I am also not interested in "trying" this or that (surgery, plug, lift, what-have-you) - the seton, while not a perfect solution, seems to be the least harmful and easiest thing to do until something that is proven comes along. We can always hope for that! [ more ]
LC N/A your fistula sounds a lot like mine. I don't typically have a lot of stool but if my pouch gets upset I have some and it hurts and makes it inflammed. I am making an appointment with a surgeon I've seen at Johns Hopkins to see what he suggests but I am leaning towards the seton. I am not at all interested in major surgery and unwilling to risk my otherwise perfect pouch. I am hoping there are advancements in the treatment of fistulas. Currently they are treated the way they have always... [ more ]
n/a So sorry you're going through this. I've had my jpouch-perianal fistula for 5+ years now. At the beginning, without the seton, I went through the usual cycle which involved the fistula closing, pain with the pressure, then popping/relief. Repeat. With the seton, I really have no pain, but it still interferes with martial relations due to its location. I still have some drainage, but no poo-drainage for the most part, mostly small amts of mucous/pus, which is taken care of with a small cotton... [ more ]
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J-Pouch ForumsGeneral Discussion
Doing good 2 years, but metabolism has changed
allswellallswell
Jan Dollar Yes, major surgery, and gut surgery in particular, can affect your metabolism. I was always reasonably thin in my youth (except when on prednisone). Had colectomy and j-pouch at age 40. I was active, yet pounds packed on. I guess my body is wanting to stow energy for the next medical crisis. Then came menopause (I was perimenopausal for a decade). I am now 20+ years post op and still struggle with weight. I just have to exercise about an hour a day and be mindful of portion control. I am not... [ more ]
allswell no this is different, This happened after I was feeling good and back to my normal level of activity. Thanks for the input though [ more ]
Scott F I tend to gain weight after surgeries. I think my activity level drops for a while. It doesn't generally go away without conscious effort. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
bleeding
L Letlive27
Jan Dollar Probably not the prednisone, but whatever is going on in your gut that is supposed to be treated by the prednisone. Hope your Entyvio kicks in soon! Jan [ more ]
Letlive27 Doing the taper off the Prednisone. I'm down to 20 mg. but my guts are killing me. Is it the Prednisone.? I eat before I take it. It's like my food is killing me. I go down to 10 mg. Thursday and then the following week I get my 2nd infusion of Entyvio. It was a surprise that the infusion only last a half hour. I'll stay on the Entocort for a good while afterwards. Still feel weird in the stomach or guts, but I'm not presently bleeding, so all is good on that front. [ more ]
Letlive27 That's right Jan. It was Cimzia. For the last three days on this Prednisone I'm experiencing some stomach pain and bloating. I didn't eat right away the first day, but have eaten first on all the consecutive days before I take it, but still feel crummy. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch sinus And pouch removal.
J jeane
Mysticobra You hit the nail on the head Scott. Time consuming. But there is two more things. The pain and uncertainty of going to appointments and doing tests while your condition is bad shape. Which brings me to your health and state of mind while trying to find out what it is that's not working. It can kill you while doing this. I was down to. 128 pounds. My body was telling me something. Of course this is all individual. Just my case. And I did make the right decision to get it out. I had a group of... [ more ]
Scott F Richard, your doctor was using sloppy language by describing your pouch as "healthy." Something about its construction was defective, or a defect developed later, though the defect(s) weren't visible on pouchoscopy. You made a perfectly reasonable decision to get your health back without a definitive explanation, but there's just about always an explanation. Finding out what's causing the failure can be difficult, expensive, and time consuming, and fixing it is sometimes impossible (but more... [ more ]
Mysticobra I had many scopes. Nothing was wrong and no explanation. I know. Weird. [ more ]
See all 21 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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