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J-Pouch ForumsK-Pouch Korner
K pouch vs. BCIR
Dave Wallace Thank you Bill. Yes, it is Dr. Schiller, and I tried to hook up with him a few years ago. He was very willing to work with me, but at the time my mother got very sick, requiring 24 hour care, which I provided, despite my pain. Unfortunately, or perhaps mercifully, she died late last year. I will begin my insurance search, but like I said, come September, my company, by far the biggest one in California, is leaving the market, and I don't know if Aetna will work, but I'll try. But my first... [ more ]
BillV Dave, the BCIR is definitely worth fighting for, provided you are qualified medically for it. You should have sufficient small intestine to make the pouch. I am assuming from your location that the doctor you referred to in your post is Dr. Don Schiller at Olympia Medical Center. He has been doing BCIR’s for many years and has an excellent reputation. I suggest that you first contact his office to see if you qualify medically for the procedure. If so, you can then discuss your insurance... [ more ]
Dave Wallace I have a long history with illeostomy, then a K pouch, then the illeostomy again. I hated the illeostomy for obvious reasons, and for a while, the K pouch, done by Dr. Launer was fine. Then I started getting pouchitis, again, and again, worse each time. I had to have it taken down to an Illeostomy again. I've now spent over a decade with that, and I'm at the end of my rope. I'd rather well, I won't finish that sentence, but I desperately want the BCIR, and have a local doctor and hospital... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Removal
Caty Congratulations on the decision to remove your sick j-pouch. You have an excellent attitude and will do very well. It may be folklore, but I was told to really take it easy during the healing process in order to keep down the scar tissue and adhesions. Be good to yourself (as much as you can). Keep us posted. Caty [ more ]
Michelle R Small update that feels soo big.... I talked with my doctor, who referred me to another surgeon. Since I'm 12+ years post pouch, it will be a more difficult surgery (with scar tissue and such) but as far as I'm concerned, this pouch is on borrowed time!!! Funny thing happened when the doctor called. It was about 11:45 and I had this thought, You've only gone to the bathroom 7-8 times since you've been up (mind you, I taught summer school that morning and t didn't count the 3 times I was up... [ more ]
TE Marie HALO52208, I had an incisional hernia repair surgery after my j-pouch surgery. My surgeon went through the same incision when she removed my j-pouch and there has been no problems. Sorry to hear about your cuffitis. That was the major problem with my j-pouch too. [ more ]
See all 32 replies...
J-Pouch ForumsGeneral Discussion
Small bowel obstruction
Melfie ❤️
Angie Wilson If you are in severe pain - you must push your doctor for help or find another doctor...this is not something to mess around with. No need to panic - but you need someone better. I don't know where you live but the very best help is at Cleveland Clinic - people fly there from all over the world and get help when people who are "the best" in their area can't fix things. Also - it would seem like you would be on some type of relaxer type medication which relaxes the bowel muscles...it's been... [ more ]
courtneyjade I have had my j pouch since 2007 and have had 2 children and had bowel complications both times. I just had my second daughter last month and 3 days later had an emergency surgery for a bowel obstruction. Since then I've been in severe pain and I too feel like I sometimes can feel stuff trying to move through. I had another ct scan and it looks the same as before surgery including an 8 cm bowel loop. I can barely stand this pain and not sure what to do. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Still in Hospital 6 weeks post J Pouch surgery...HELP!
yogs Winterberry, Things have improved over the past few days. I am expelling gas and eating solids. Rectal foley and all the IV has been stopped and hopefully home soon. I did read about the bidet and will definitely look into buying something very soon. Thanks a lot for all your advice. [ more ]
yogs Sharon, your post made me laugh reading about speeding tickets. Thanks for all the advice you have given. Will refer to them whenever needed. I did take morphine almost everyday when my pain was horrible, my surgeon never had a problem with although I checked with him before taking them so often. Anyways am out of it now and its a good lesson for future. I am on solids now with 6-7bm/day. They are planning to discharge me in the next few days. Hopefully things only improve from now on. [ more ]
yogs Lambiepie, i have been doing those excercises you suggested past few days and they do seem to be helpful. Will keep doing them from now on. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Blockage
deweyj courtneyjade you need to call your doctor and seek their direction. extreme pain may be sign of an abscess ie an infection post surgically which can happen and must be treated. obstructions are indicated by bloating and lack of bowel movements, often resulting in vomiting ie the peristalsis has nowhere down to go so it comes up, and waves of pain as the peristalsis persists. it is extreme but it is also in waves, from what you are describing I would guess more of an abscess type issue. [ more ]
courtneyjade I've had my j pouch since 2007 and just had my second child last month , 3 days later had an emergency surgery for a bowel obstruction. Since then I've been on severe pain like described above. I went to the er this week i couldn't take the pain. A ct scan still showed an 8 cm bowel loop and looked just a bad as the ct scan I had done last month before surgery. I'm still having bowel movements so my surgeon doesn't think I have an obstruction but the pain is just too much I feel like... [ more ]
Scott F If you're not physically well enough to make it to the ER on your own, that's why ambulances exist. Be aware that ambulances are expensive, and ER visits for blockages can be very, very frustrating. If you are still keeping liquids down you're probably not on the verge of bowel rupture, but if you start vomiting or stop peeing then the time has come to get some help. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal pressure after 2nd surgery
Sneha Thanks for the consoling and encouraging words Winterberry. I am hoping for the best! [ more ]
Winterberry Hi, Sneha. That is great you are getting results from the suppositories. After takedown you might not feel anal pressure at all, or it might be mild, but if it happens you won't be afraid because you'll know that it's part of the healing process. For me, the first months brought something new every single week. I would deal with one thing and something new would present itself, and on and on. But soon everything healed or settled down. I knew I was okay when I could leave the house for hours... [ more ]
Sneha Thank you Winterberry.. but I was feeling the anal pressure *before* my takedown. So I visited my surgeon and he said that the rectum could still be inflamed from colitis. So I used Mesalamine suppositories and I feel better with it! The mucous discharge has also reduced. It is scary to know that the anal pressure will increase after takedown though. But Glad to know that you are much better now. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics
Bobish Very few trials have been done on probiotics at all. Vsl and symprove are 2 that have been proven to thrive in the gut (when swallowed). There is some evidence that yakult (a sturdy single strain of man made probiotic) can survive but at reduced viability, the potency depends greatly on individual and diet. The point is that there is a science to get probiotics from the mouth to the bowel through stomach acid. many probiotics are designed with a buffer that needs stomach acid to activate the... [ more ]
skn69 I tried injecting it into my k pouch when I was getting repeat infections and cysts...i also tried washing my pouch out with sea water for a week...although I do think that my pouch function improved it did not cure the problem. Sharon [ more ]
Jan Dollar No, but some folks here have filled gelatin capsules for rectal use or used probiotics in enemas. Seems to make sense, but I don't recall lasting resilts with it. Perhaps it is because there is insufficient time to colonize. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
chrohns disease
Jan Dollar Crohn's is known for causing strictures in the bowel. This can lead to twisting. It is not a definite confirmation of Crohn's, just a leaning that direction, like fistulas. Prior gut surgery can also cause this twisting. Using Remicade would not negate the possibility of a Crohn's diagnosis and it is not all that uncommon for the diagnosis to change or evolve post op, even decades later. Jan [ more ]
Bobish I'd be interested to know how Crohn's can cause twisted bowel? I genuinely don't know if it can or can't. I would have thought Crohn's was inflammatory condition but twisted bowel sounds More physical, so not sure how the 2 relate out how they came to that conclusion? As for the remicade, is an indication, however sometimes drugs don't work for people, and sometimes people develop new symptoms. They can test for Crohn's markers though, again I don't think it's 100% but may be worth doing. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Potential Remicade Issues
Jan Dollar Azmedic, I forgot to mention that you should be tested for anti-Remicade antibodies and a therapeutic trough level before your next infusion. This will ascertain if your dose is correct and if you have developed antibodies against the Remicade. Jan [ more ]
CTBarrister I have been taking Remicade since November 2015, over 1.5 years now and haven't had any side effects. I have also passed all liver chemistry tests and my Remicade test came back showing therapeutic levels of Remicade in my blood labs. [ more ]
Jan Dollar Well, if you do want to continue with the Remicade (if the on call doc didn't already discontinue it), be sure your regular dos is aware (so maybe the dose can be adjusted or the pre med). Also, don't plan any trips or unusuL activity in the following couple of weeks. I can understand why you'd want to give it another go. Just be aware that repeated exposure to an allergen can induce a more severe reaction each time you are exposed. Stock up on Benadryl! Good luck! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
getting more sleep
CTB23 I also take 2 Immodium, per surgeon recommendation. [ more ]
n/a If taking just 1 immodium, try 2. Made a huge difference for me (my newer dr.'s recommendation). [ more ]
CTB23 I have a prescription for Lomotil and take it sometimes during the day if I am away on vacation or working a long day. That works for me as well. My surgeon prescribes it over the phone. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Infection at wound site post-reversal
rebecki Just to update, I went in to see the doctor, he said it looked like my wound had healed prematurely and my body got a minor infection as a result of a reaction to the stitches that hadn't dissolved yet. He lanced it after numbing me, cleaned it out and removed the stitches, and now I'm supposed to tend to it like I did right after surgery. I have another follow up this Friday to make sure it's healing properly. Thanks again for the input everyone! [ more ]
rebecki Thank you for the responses, I really appreciate it! [ more ]
lablover If it is hot, yes. [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy
TE Marie Thanks for the question and discussion. I have had a perm ileo for almost 2 years with this last one abour 1.5 years. (I was diverted then had my j-pouch removed 6 months later.) I still have one spot at the bottom of the stoma that I can't clear up. I've tried some of the above suggestions but learned a couple of more through this thread. I say you can always teach an old dog new tricks! [ more ]
Mysticobra I use two different skin barriers (protectant) before I apply my wafer. One is a wipe the other is a spray. I use the wipe first and then use the spray to make sure I cover all of it. Then I use a hair dryer. No heat. Just cold air. To get it dry. Only takes a minute to do this and when I'm dry it's slightly tacky. Seems to work well and protects my skin so far. I'm happy with the way I do it. It's all I use. Except a dab of paste at the cut line scar. A dab on each side of the stoma where... [ more ]
Paul G. Thanks again. The Marathon liquid is very expensive but I'll check with my ins. Co. about coverage. As for odor control it took me years to solve that. I use a combo of m9 and Coloplast deodorant lubricant. I also put a couple of drops of "Just a Drop" in through the flange on top. Works like a charm. I do have some gel tabs coming as a free sample. I'll see what those do for my output. Thanks for your generous help. I'll let you know how it goes. [ more ]
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J-Pouch ForumsGeneral Discussion
Permanent Ileostomy vs J-Pouch (T-Chart comparison)
Former Member Yeah, apply ilex to skin around temp ileo and apply Stoma collar or base/flange directly onto the ilex whilst tacky, no need to wait for ilex dry, I didnt. If skin is red raw, broken and oozing; ilex needs to be applied heavily, kind of smeared over the damaged skin, again no need to wait for it to dry; keep the ilex applied for as long as possible to be effective, although, when changing appliance, it will normally peel off in large chunks. If skin still damaged, then reapply ilex in a... [ more ]
Lambiepie I had red, sore skin with my temp ileo, too. I had ordered Ilex paste but was too nervous to try it as I assumed I had to let it fully dry and I was concerned about adhesion. Strange, good to know that it doesn't need to dry before applying everything! [ more ]
Mysticobra Ok. That clears it up. I'm sorry. And yes. I had the dreaded temporary ileo. Omgoodness. That thing was terrible. I thought the end ileo was gonna be like that and dreaded getting it. But the end ileo is easy. It doesn't mess the skin all up. Also sorry I can't help. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Passing Gas
Mema 1 Thanks for the funny stories, ya' gotta laugh! Gee, $80 for a bidet on Amazon doesn't sound bad. I guess you would need a plumber to hook it up, right? If my husband were alive he'd be able to do it in a minute, but I know that I couldn't for the life of me. I have a travel bidet, which is a nuisance. I get water all over myself and the floor....sometimes my bottom is so sore I can't even use it, like today, well, almost every day. I also use panty liners, thank goodness for them. Sometimes... [ more ]
Winterberry Hi, TF. You can get a bidet to attach to your existing toilet for around $80 with hot and cold water on Amazon. Cold water bidet cost a bit less. It's not too difficult to attach, comes with detailed instructions or you can find on YouTube how to install. I bought one with hot and cold water after my reversal and it saved my butt, literally. Along with a travel bidet squeeze bottle, my burning raw skin was "cured" and I've never looked back [ more ]
tf This story might put a smile on your face. Over the weekend shopping we went to a store where I live close to West Reading called Baldwin brass. It's known for it's door nobs, kitchen handles, etc. The sales lady came up to us and said do u want a experience of your life? Sure why not. They had this toilet on display for sale called toto washlet. You could try it out in the rest room. It had a remote control with settings for how the water comes out to clean ur bottom and it's warm. The seat... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hydration & Nausea
tf Thanks for the tip [ more ]
Paul G. I also carry a water bottle with me all day. I have been hospitalized twice for dehydration. I have an ileostomy and lose a lot of water. The problem with dehydration is that you don't know you're clinically dehydrated until it's too late. I will try the Gatorade. [ more ]
tf Hi, I carry a water bottle with me all day every day. Just sip throughout the day. Also, to add some vitamins I use my infuser and add fruit and vegetables. I can tolerate better this way. In winter and when I am running on low energy I use emergence C-. This is a powder with every vitamin u need and I add to my water. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Prolapse
Pouchomarx No, I had it redone due to sinus and tip of pouch leak [ more ]
Former Member Yeah, I find that I cannot fully void. Also I have had problems with leakage since day 1 of my surgery 6 years ago. I find that some days are better than others however there is always leakage. [ more ]
Ljz I too have lived with a prolapse for awhile, about 2 years. Had surgery a year ago because surgeon thought it was just a flap of skin, kind of prolapse, that he removed along with doing a pouch advancement and mucousectomy. Shortly after my surgery, my pouch was protruding again, about an inch to 1.5" and causes problems with me being able to fully eliminate. Even soft stool doesn't empty without repeated attempts. Lately, I've tried to keep my diet /liquid intake such that output is looser,... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Infertility with J pouch?
Shellie Yes...they were able to get my eggs with IVF and they fertilized fine. when they put the embryo back in my uterus there is only a 4% chance of it somehow becoming ectopic in your tube, and I guess I was one of the 4%......I had to take Methotrexate and then developed a strange infection which is when we had to stop IVF and move onto adoption. I did conceive with my son naturally, using Clomid, so it can happen....It was the single most stressful 4 years of my life going through Infertility... [ more ]
Zc Thank you to all you lovely ladies putting your stories on this page. I have found on my infertility journey my friends or colleagues dont really want to discuss this topic as if it's contagious. I am so grateful to have a support system on this page. I have googled so many different things hoping to find out everything I possibly can. The information is so limited though. After my failed ivf with 1 fertilized egg they done an amh test and found that I have less eggs than I actually should... [ more ]
Momaioneil @Shellie so they were able to get to your eggs even though they were in scar tissue?? [ more ]
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J-Pouch ForumsPouchitis
Flagyl Dosage for Pouchitis
Orphius77 Hello LABLOVER. I also feel a little odd after a few weeks on the drug, In fact I would say, impatient and a little too ready to snap back verbally, I try to ease back and not set goals too high and be pragmatic. When my wife found out I was coming off Cipro and going onto Metronidazol she was not too happy, I now must take great care to accept any sort of negative comment from her as if I respond she says the drug makes me impossible to live with. Seriously I now know the affect, so do... [ more ]
lablover My hubby doesn't do well on Flagyl. though it does cure it for him, it just makes him feel odd. [ more ]
Orphius77 Yes, I absolutely do not believe that the J pouch is the panacea that the Surgeons tell us it is. once fitted we report not to them but the Gastro specialist , who picks up the problems and the Stoma nurse. both of these expect us the person with a worse life style and more discomfort and problems than the Colitis. I do believe that only people without any indication of auto immune problems should be given a J pouch. My Temporary Ileostomy was with me for 15 months because of problems at the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Major leaking.
Lisa H Thanks. Transferred to Mt Sinai earlier today. Hoping for some answered. 3 CT scans in 4 days. Ridiculous. Each DR/ hospital wants their own. I guess that's a whole other healthcare discussion. Since Bauer is here and did my orig surgery and it was so succedsful, I'm back. Of course he's on vacation. The care was horrible 18 yrs ago and no better now except for 2 staff who went above and beyond. Will know what 3rd scan says tomorrow hold on out for 25 min for my meds - for the neck disc... [ more ]
Winterberry Lisa, sometimes pain management meds cause diarrhea, and you are / were taking many different meds, a whole cocktail of meds, as you say. It could take time to clear from your system. The green output is likely your bile that is leaving your system. Remember the first few days after your reversal it was all green sludge leaving your body? That was bile, green because there is no food for the bile to work on, usually turning it orange or brown. And if you are NPO now your bile will be green... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch Struggles
Mysticobra Patience. Even though mine didn't work out I do remember it was kind of ok for awhile. It's a slow process. And if you have gotten this far your tough enough to make it. Your pouch is newborn. It's gonna be difficult to adjust but you can do it. Iliex paste worked for me. That's good advice. The camoseptine I couldn't handle. I guess because of the ingredients. Just made my butt warmer. I can't explain it. I could feel it as when I used regular paste it soothed better. Good luck. It's young... [ more ]
CTB23 I have to agree with Winterberry about the bidet. Best thing ever. Also really make sure things are really dry before applying any ointment to the area. I used Calmoseptine from the beginning and never needed anything else. Everyone is different, so another ointment may work better for you. I have heard Ilex paste mentioned in other posts. I believe you can get it on Amazon. My surgeon started me on Immodium, Benefiber and Lomotil around the two month mark. I now take Benefiber once a day at... [ more ]
Jcladous ❤️
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J-Pouch ForumsGeneral Discussion
Remicade for fistula
LC Yeah I haven't had to do meds for my fistula and I very rarely have stool leakage though it (only if I am sick for a while with diarrhea). Its more the constant discomfort and the location. I believe my fistula starts at the anastomosis site but it exits close to my vagina. Despite being a fairly mild fistula by fistula standards it has really killed my sex life. Even when its not seriously inflamed, sex is uncomfortable as is riding a bike and other activities that put pressure on that... [ more ]
Meatball ...con't I've been living with a post op fistula for 15 years, dr does not want to attempt repair due to high failure rate and also it's too close to anistomosis site. I take a large amount of Metamucil (store brand is fine) throughout the day and also probiotics. My stool is formed so nothing seeps through, including gas. Good luck. [ more ]
Meatball Try going drug free. [ more ]
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J-Pouch ForumsGeneral Discussion
How long do J Pouch last ?
LC Glad to hear you have something treatable. Good luck! [ more ]
Putri I was in hospital yesterday, for a good look inside me, problem found, not the pouch as I was told ! but my kidneys are full of large stones, very full. This is the cause of the pain and problems. I booked in for surgery this Friday the 4th to have the operation. Three to six weeks of work, only started this new job last week, not a good start ! But it pays to get a second opinion, Thankyou everyone [ more ]
Todd C Over 30 years and still holding......no pun intended [ more ]
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J-Pouch ForumsPouchitis
Can use of antibiotics for other illnesses cause pouchitis?
Scott F Not everyone gets the alcohol reaction with Flagyl. I don't drink much anyway, but I'm planning to have a beer tonight, and it won't bother me. [ more ]
DarrenKS Flagyl = no beer ���� and that good old metallic taste... But seriously, will discus with GI doc. thx for feedback! [ more ]
Scott F Darrenks, when Cipro alone lost efficacy for me adding a relatively low dose of Flagyl in combination did the trick, and has worked for a few years. [ more ]
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J-Pouch ForumsGeneral Discussion
No rectum plus shortened large intestine.
TE Marie So sorry you are dealing with this on your vacation. You might try cutting out salads, fresh fruits and veggies. That is if you are eating them. Just an idea as those might be the current culprits causing you problems. [ more ]
Crawf Hi Liz thanks for sharing my story and thank you every one for all your suggestions. In Bali at the moment and tummy gone worse feeling very bloated with constant diahoria at the moment. Popping those gastro stops as advised by my surgeon and doctor. Lost appetite heading back home next week and hoping to get back on track xox [ more ]
Crawf Re: No rectum plus shortened large intestine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery or Humira / methotrexate
claire Agree would try the meds first! Humira turned things around for me and saved me losing pouch, now take Imuran with it...best of luck with your decision [ more ]
Saff Yes indeed Jan, Thanks Marie for your suggestions also - yes its not an easy decision. They have both have pros and cons. [ more ]
Jan Dollar As you can see, there is no one right answer. It all depends on your own particular case, what meds you've tried in the past, and what risks you are willing to assume. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Part of pouch coming out of rectum
Scott F James, I know something about demanding schedules. Often there are options, though. Instead of thinking about the very large commitment of a surgical repair, it's best to take it one step at a time, establishing a proper diagnosis and a relationship with a qualified surgeon. This is enormously valuable in case you have an emergency. You may be able to get an appointment for a consultation early in the morning (surgeons keep crazy hours) or on a Friday afternoon, with little or no impact on... [ more ]
Jcladous Hi Scott, I am currently extremely tied down by my apprenticeship, missing any part of a week can cause serious detrimental damage to my future, I must complete a large scale amount of work before the end of the month to get into University. My plan is, and I'm hoping here, that the issue with it getting stuck out, horrific as it sounds will go away, at the moment if it does get stuck, I have to form a crouch position and give the "prolapse?" gentle persuasion. Not damaging it at all, just... [ more ]
Scott F James, you explained it perfectly, and a surgeon would understand immediately. You could say that someone told you it sounded like a prolapse, but that's probably unnecessary. It's hard to say how urgent it is, especially with a 2-3 year history of this without trouble, but I think you're saying it has just started (in the past day) to get stuck (or I may have misunderstood). In any case, I'd suggest making an appointment with a colorectal surgeon as soon as you can, mostly to try to avoid... [ more ]
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J-Pouch ForumsHelp! Need advice now!
How to Gain Weight?
skn69 You might want to cut out the milk...very often you pouchers are lactose intolerant and that can lead to nausea...replace it with rich protein smoothies using bananas and protein powder for thickness. Sharon [ more ]
Former Member Whether Junk food or not, you shoud be gaining weight , especially if eating to such an extent you're feeling nauseous. If there's no undelying reason as to why you're not gaining weight from your current intake of food, then you're either not eating enough or you're too active for what you are eating. However, such a desire to gain weight can easily lead to aquiring too much body fat, which is a damn sight more difficult to get rid of than it is to aquire. Ensure you consume good calories,... [ more ]
alecz222 The nausea is something that I've had for a long time and it's usually due to over eating or trying to force myself to eat more. As I mentioned, I eat a lot and very often but if I want to add more food to my regiment it has to be gradual or it will make me sick. I've talked to my doctor but she always just suggests I eat more or drink more insures and boosts, which do not help me. I've even had doctors tell me that since my body is attempting to maintain my current weight, I may never be... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Frozen pelvis?
skn69 Hi, I just read your response...there are a lot of different possibilities...have you had your kidneys checked? Are you drinking enough fluids? While still active I had ovarian cysts, sapingitis, kidney stones ( sort of got those under control with filtered water instead of mineral water, kicked up my intake and cut out soft drinks and other liquids other than homemade lemonade...it rebalaces the acid/alkali balance).... Lots of possibilities including stenosis, misalignment and cramping. PM... [ more ]
Momaioneil Hi- just reading this post- I have been diagnosed with frozen pelvis but have no history of endo and cycle totally regular. I get desperate burning pain in my lower back at ovulation and also at period time. It gets so bad no pain medication over the counter will get rid of it. I don't want to go down the route of heavy pain medication. Wud love to talk to u if u can pm me? Xx [ more ]
skn69 Hi Duck, Is the connective tissue disease Ehler's-Danlos but some remote chance? It seems to be more and more commonly diagnosed among people like us. There is some sort of link. I have Ehler's-Danlos (a connective tissue disease implicated in a lack of collagen production resulting in overly lax joints, severe musculoskeletal pain, vascular fragility, delayed healing post-op...) , I was diagnosed in my 40's after years of unexplained complications. Various symptoms kept popping up along... [ more ]
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J-Pouch ForumsGeneral Discussion
Not pouch related but thought I would ask
Pouchomarx Have appt with my urologist next Friday to get urinalysis and discuss what to do if anything.... [ more ]
Pouchomarx Let me know what they say... [ more ]
CTB23 I also had blood in urine and a cystoscopy last year. Everything was fine but I have a follow up again in the next month. My urologist also said this most likely is nothing to worry about and that his explanation sounds similar to what your urologist said. I'll see how things go at the next appointment. [ more ]
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J-Pouch ForumsPouchitis
Have continued to have cramping and strong urge to go, still going on 3 years
Funky26 I have had the same issues with cramping and urge to go and I get to the bathroom and very little comes out. I had my final surgery 2.5 years ago. I have had luck with Cipro but I hate the thought of having to take something for the rest of my life. I never had as many issues when I had colitis. Terradon is right, stress brings it on big time. [ more ]
Terradon What are you eating as a regular diet? And how much water are you having daily? What is your stress levels at? Do you have any sort of meditation practice? Alcohol? Any recreational drugs? (Not pot) Have you tried Xanax (Alprazolam)? [ more ]
Scott F Neither of those drugs alone did anything for me. Cipro, on the other hand, was a nearly immediate miracle. When an antibiotic isn't helping with pouchitis after a few weeks something needs to be changed - either the dose or the medication. Multiple years of an antibiotic that isn't helping is just wildly inappropriate. Another thing that sometimes helps in chronic pouchitis is significant doses of a good probiotic. I have had good results with VSL #3 DS (I'm at 4 packets/day). [ more ]
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J-Pouch ForumsGeneral Discussion
Resection
briantodd Thanks Scott. [ more ]
Scott F Briantodd, your upset is completely understandable. It's best to remember that the disease is putting you (and your loved ones in this position). Your diet most likely has nothing to do with it, and this is not a question of vanity. Your pouch is apparently in fine shape, so why not try to get good use out of it? Crohn's can make a mess of a permanent ileostomy, too. Or it can go quiet and leave you alone forever. I hope it takes the second path. Good luck! [ more ]
briantodd Yeh I've tried lots of meds and been "relatively" ok for a long time. All of my recent issues(read last two years) are due to pain from what I now believe to be mini blockages due to stricture and narrowing of small bowel behind it. I was not having the "typical" for me pain associated with active disease, just pain from these blockage episodes even though the surgeon and GI say they did see a few centimeters of active disease just above jpouch. I knew temp illiostomy was likely when I went... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Current J-Pouch Partial Blockage
maddie18 I have seen an Osteopath who has done some work on my tummy to break up adhesions and scar tissue that seem to be the cause of obstructions. I have had upwards to 100 obstructions over the last 30 years. She had recommended going off of gluten and staying away from cheese and milk products plus coffee. I have the occasional coffee and the occasional piece of cheese. I haven't had an obstruction that required hospital visitation in about 5months. I am hoping this is the answer. It is... [ more ]
Tanner Had 50 blockages in 33 years. Go to ER. 25-50 ml of Phenagen and 25-50 mg of morphine works 95 % of the time. Before I go I take pain Drink lots of water and lay upside down with hot water bottle. Works also. Hope this helps. T [ more ]
Thom Hi. So a day after posting this, I started getting the occasional soft BM and started on soft solids again to see how things were going. I could feel myself getting slightly bloated with the occasional stomach ache, so I then went back on liquids again for one more day. During this time, I started doing slightly normal BMs so I then went back on soft solids and then a regular diet the day after. During this time, my BMs returned to normal, but the stomach pain would occasionally come after... [ more ]
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J-Pouch ForumsGeneral Discussion
J removal?
TE Marie I have an end ileo and people can't tell I have an ostomy. My end ileo placement is in a much better location than my temp ileo was. You can even buy undergarments that have a shelf sewn inside that facilitates holding the bag close to your body. (See Ostomy Secrets on-line.) They have good sales as you will see their products are pricey. They are of good quality as I have laundered my underwear many times. When I had my j-pouch removed I went the end ileo way and got a say in where my stoma... [ more ]
BillV If “successful” is defined as the percentage of BCIR’s that do not have to be removed, that percentage is approximately 94%. As with any major surgery, including end ileostomies, there is a possibility of complications which for that procedure include pouchitis and valve failure. Most of these conditions are satisfactorily handled with antibiotics or surgery. The patient satisfaction (i.e. quality of life) for the BCIR is very high. More information is available online at www.bcir.com . A... [ more ]
Halo52208 Thank you guys. I've thought about the BCIR. Not sure how successful it is though. [ more ]
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J-Pouch ForumsGeneral Discussion
Insurance
Scott F You'd have the best success with a large employer's policy, since that generally won't require a medical history or exam. I know that's probably not what you were hoping for, but it may be the only option. The insurance companies won't be excited about taking on the risk otherwise. [ more ]
GutWrencher ❤️
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Very Watery BM.
Veggiescott You also might want to ask your doctor about prescribing Colestyramine (I tried it in the salve form which was kind of tough to use, I had to mix it with aquafor) that you could get in powdered form and mix it with liquid to drink it; that might help a lot with the burn [ more ]
Veggiescott Nights seem to be the worst time for me also if I am going to have a bad time; one thing I have noticed is that if I drink too much liquid at one sitting my system cant absorb the fluid (usually lemon water) fast enough and it just pours out of my butt in an elongated bathroom trip so I have to be careful about that. Also scott mentioned one pill of the Lomotil and Metamucil are very low-dose which is true; as for the Lomotil you can take up to eight a day and should (if necessary and it... [ more ]
Winterberry Rzraz, what are you eating and drinking for lunch and dinner? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Why is my iron level so low?
Former Member I do take vitamin c supplements and drink my share of orange juice too, since I have heard that vitamin c helps the body absorb nutrients more effectively. [ more ]
JLH Scott – – from my experience it is the iron level that should be at 100 and not ferritin. [ more ]
clz81 Just a tip...to help boost your iron, when you are taking iron supplements or eating foods high in iron, have a glass of orange juice or a serving of fruit high in vitamin C. Vitamin C helps the body to absorb iron. It can make a big difference. [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
Going to try Remicade. Good idea?
Veggiescott Like so many things for us sucess/failure with Remicade and Humira seen individualistic; I would have to side with Karenchase on this one. Prior to my pouch surgery I was put on them (Humira first) and neither worked for me and the side effects were intolerable; hope I never have to take them again [ more ]
Karenchase Jan, yes, it may be vedolizumab. I think that was one of the drugs I trialed when I still had my colon. It was a phase 3 trial so I knew I was getting the drug, and not the placebo. That would not be the case in the current trial, in which it would be a 50% chance that I would get the drug. Anyway, I'm still turning it over in my mind. It seems like a big commitment. [ more ]
Jan Dollar Are you talking about Entyvio (vedolizumab)? It is different because it targets the gut, while the others are more systemic. Each biologic is different, so you really cannot lump them al, together. Even the biosimilar to Remicade is not the same as Remicade. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
losing weight
Alaine Hi Scott, I'm going to let my doc take a look, it has been several years. [ more ]
Scott F Alaine, if you haven't been scoped in a long time then it's very appropriate for your GI to have a look. If you're in pain you'll be best served by finding whatever's going on rather than assuming it's your diet. [ more ]
Alaine Hi Sarahxyz, and Winterberry, Thank you for your help. I have so many issues, and yes each doctor has blinders on. I saw my Gasrto doc today, of course he wants to scope me, I don't think this is the problem. I think this diet is the problem. I also don't have much of an appetite. My last blood work showed my sugar was just normal so that was good news. Unfortunately I cannot eat bananas due to my kidney problems. I only eat chicken and fish due to cholesterol problems, so not a lot of... [ more ]
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J-Pouch ForumsPouchitis
Alicaforsen
Gary Ontario Alicaforsen is administered as an enema. A global trial is underway. My participation is through a hospital in Toronto. If you Google the drug you will get more information. [ more ]
clz81 Following. I had never heard of this drug. Is this an oral med or used as an enema for this trial? Any new treatments, I would love to hear about! [ more ]
Gary Ontario I was in the trial but noticed no difference. Later this week I start alicaforsen open label. Just finishing Entyvio infusions which did nothing for me but cause fatigue and occasional sharp pain in my extremities. I swore off Cipro a year ago because of nerve damage, which is too bad because it certainly alleviated the pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch issue
TE Marie I had my adhesions lysed during surgery and feel much better. [ more ]
virginiac Totally agree with Jan, the scare tissue can definitely cause strictures (narrowing). Good luck, Virginia [ more ]
Jan Dollar In all likelihood, you have adhesions (internal scar tissue) that are binding your intestines like rubber bands. We all get them after abdominal surgery. Some more than others. The only solution is surgery to release them. I am surprised your doctors have not explained this to you. The reason that surgery is not the first choice is that further surgery can cause more adhesions to form. Sometimes it just becomes necessary. I would suggest you see a surgeon to discuss this, as your quality of... [ more ]
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J-Pouch ForumsOstomy & Skin
Question. What is your routine on emptying your appliance?
chiromancer I think it depends on the type/manufacturer. I went from one manufacturer which I had in the hospital, to another and it changed my method. I went on line and watched a short video by the new manufacturer (coloplast) . It was simple just wiping the end with toilet paper, no rinsing, haven't changed basic method since. [ more ]
Mysticobra Thank you T. E. Long answers are good. It is a simple question. But getting it out there with some answers is important. All input is appreciated. Richard. [ more ]
TE Marie I rinse it out with water everytime I empty. Then I used TP to dry the end out before I fold it up. My ourout varies in thickness during the day from thick to applesause consistency. When at home I use a red solo cup to pour in the water. Be careful not to pour too much in as it will go uo to the top of the bag and get water into the wafer. When away from home I have a little bottle of water in with my supply bag. I carry some TP folded in there incase I get stuck emptying in a public... [ more ]
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J-Pouch ForumsGeneral Discussion
Recovery From Final Procedure
Swag Anderson Perfect! This helps a ton. Thanks to all of you (especially Mr Richard)! Glad to know I'm not the only one who wasn't perfect right out of the gate in terms of BMs. God bless! [ more ]
Mysticobra It never worked from the start. It was explained to me beforehand. My uc was so low in my colon that it would affect the out come. And it did. So after 26 months I had made the decision (finally) to have it removed. I haven't looked back. It will be two years in October since I did that. I feel wonderful. I don't regret trying it. But it was not a good experience. Your doing well. You will be ok. Your way ahead of where you should be. That I like to read. And being so young this shoukd not... [ more ]
CTB23 I use Benefiber instead of Metamucil. My surgeon recommended either this or Metamucil Clear. I believe because in some people it can cause less gas. I had used Benefiber for years when my GI thought I had IBS so I was familiar with it. To me it seems to dissolve well and has no sugar or taste to it, also not grainy. My surgeon is happy with my results and I just had my first pouchoscopy which showed that things are good with just some inflammation in the cuff but no symptoms of cuffitis. So... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Low pressure
skn69 Yup, very low...when I had my possible "TIA" or whatever that was my pressure was critically low...90/50 and lower depend on the hour...Sometimes hard to lift my head off of the pillow some mornings....that is why I refused the BP meds that they wanted me on "just in case"...I need to est salt or my head swims, I work out quite a bit and don't have a/c so I sweat...and lose salts....my k pouch runs watery unless I am on opiates (I hate them ) so salt is an issue for me....but salt isn't... [ more ]
Lambiepie Yes, I had low blood pressure (90/60) during the first couple of years with my jpouch. It increased after I put much needed weight on and became more hydrated. One thing that helped me was the "legs up the wall" yoga pose. Lay perpendicular to the wall with your buttocks against it and your legs straight up against the wall. A few minutes each day, as long as you have no contraindications medically. It's not a cure-all, but it can help. [ more ]
Former Member I have low blood pressure now. Well the 90 over 68 they just measured yesterday is still in the normal range but still on the low side. This happens to me most of the time now. I am wondering if my J Pouch is to blame for this or could it be something else? If anything my pouch is why I'm anemic now [ more ]
See all 6 replies...

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William J. Johnson
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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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