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J-Pouch ForumsHelp! Need advice now!
Incisional Hernia
RC Rocco C
Rocco C one last point. Because I lost so much of small bowel, first from surgery, secondly from obstruction, I normally have 10 to 12 bowel movements in a 24 hour period. Last year I had to purchase discreet seat (toilet seat covers). I started using them on January 1st. By the middle of December, I went through a 1,000 sheets and that is what I just use at home. It does not count going to the bathroom at work or anyplace else. I am on Lomotil and take 2 tablets 2 x a day. Sometimes I have to take... [ more ]
Rocco C The obstruction of 32 inches of small bowel removed was gangrene. [ more ]
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J-Pouch ForumsGeneral Discussion
Visbiome with food? Maintenance dose?
L lizardMWC
Scott F The packet (powder) form is most often mixed with food, such as yogurt or applesauce. It’s definitely fine to take with food. [ more ]
lizardMWC Thanks Scott - so taking with or without food doesn’t impact its effectiveness? I sort of recall seeing something about taking probiotics on an empty stomach but it's most convenient for me to take at breakfast when I take my multivitamin. [ more ]
Scott F I believe that there’s no evidence that taking it with food matters. [ more ]
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J-Pouch ForumsGeneral Discussion
Entyvio
C capper
BrendansMom My son went that route as well and ended up on Entyvio. It's working for him. Good luck!! [ more ]
Letlive27 I've been on it. We did a check after I had been on it a good while, and just before my every 8 week IV, and there wasn't much in my blood stream. The doc upped it to every 6 week. He did another check after I had to get iron again, and there wasn't much in my blood stream. I told him let's just call it with all this stuff. I did the Remidcade and the Humira once a week, and let's just call it. He talked me into doubling the Entyvio to 600 mg. every 8 weeks since it is supposed to be a 8... [ more ]
Scott F The surgeon offered me one- or two-step J-pouch options. He warned me that my time in the hospital would probably be about the same with either approach. I chose a single stage procedure because I was flying in from out of town. I did have an uncomfortable, ten-day hospitalization, but went back to work in about six weeks. I was lucky that I had close family in the area, and I stayed there for an extended visit during my post-hospital recovery. As for the procedure itself, I slept through... [ more ]
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J-Pouch ForumsPouchitis
Cuffitis Treatments
L LeanCam
MDS Cuffitis treatments I had in the past were Mesalamine and cortisone suppositories. [ more ]
Scott F Hi, Leancam. I’m not sure why your doctor thinks that Cipro can’t be used long term. There are some risks, and the dose should be as low as possible, but long-term Cipro use can be a good choice. I’ve been on Cipro for about 11 years. Cipro is more often used for pouchitis than cuffitis, but what’s more important is that it works for you. Other antibiotics that could be tried are rifaximin, Augmentin, and tindamax. It’s best if you can find several that work, and change between them every... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Peeling fruits and vegetables
MIKEEYMIKEEY
MIKEEY Thank you [ more ]
tf I do not eat skins @all. Never had constipation yet. I love white & sweet potatoes peeled. Fruits & vegetables I eat sporadically & peel most. It may sound crazy & time consuming but that's me.🥴 [ more ]
MIKEEY Thank you so much, I will try as you say very small portions, it seems most do eat it with skin on. I have always been afraid to try. [ more ]
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J-Pouch ForumsGeneral Discussion
diet soda and pouchitis
kangaroo womankangaroo woman
Steven Silz-Carson Agreed. With the caveat that soda, diet or not, generally contains significant amounts of phosphoric acid. The phosphate group (PO4)3- has a high affinity for calcium, and are the main minerals involved in kidney stone formation. Thus soda pop may plausibly contribute to stone formation, but is the pleasure worth the risk? [ more ]
Scott F Dehydration definitely causes kidney stones. There’s no reason to think that diet soda does. [ more ]
Daleer Yes once in my life. About 4 years ago I was playing the piano and suddenly felt some of the worst pain in my side I've ever felt. A couple weeks later I had surgery to break up/remove 2 stones in my kidney (luckily they were able to do it by going through the urethra without cutting me). The surgery was successful but the surgeon left a stent in me for a couple weeks and until I had it out I was in complete agony. Once the stent was removed I was good as new. Went right back to drinking... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible cuffitis?
M Matchaqueen
JPouchMom Great news MatchaQueen! Thank you for sharing! It gives me some hope for my daughter! <3 [ more ]
Matchaqueen To Anyone who might read this in the future, I just wanted to give a bit of an update. Over the past 5 months, I took VSL#3 a couple times. I was pretty convinced i didn’t have pouchitis, so I wasn’t too diligent. 3 weeks ago I did a stool sample which showed high levels of calprotectin in my stool, indicating inflammation in my system. A couple days later, I started the steroid suppositories which were helpful for a bit, but after 10 days, didn’t seem to make things much better. 1 week ago... [ more ]
Scott F Itchiness is sometimes a sign of a fungal infection, which (if you have it) can drive you crazy. Sometimes, though, itchiness is just a variation of pain. If things tend to be damp there (e.g. if you have some leakage) and the itching is external then you could try a topical anti fungal. You may see some more improvement from the Proctodan - I’d give it more time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Are these symptoms common post surgery?
FAPqueenFAPqueen
JPouchMom Strange pain? I think my daughter is experiencing that same pain - which none of the several "team" of GI doctors knew what it was/is. We've been on all sorts of pain meds, narcotics and antispasmodics and nothing ever touched the pain. Following this post. [ more ]
Bent-Arne Me too have been conserned about this my biggest consern was that I couldn't have a j pouch created when my rectum was so inflamed again. But after a talk with the surgeon i was happy again, they just said they cut out the part that's inflamed. But now I'm in really big trouble.. Have so much pain and cramping and bleeding, i don't respond to any medication at all. So next week I'm trying some anti tnf treatment, probably infliximab. So hopefully this will calm a bit down before surgery in... [ more ]
FAPqueen I I am very careful to chew well, and I can tolerate vegetables really well bad have even ate salads and everything with absolutely no troubles. I’m a bit more adventurous then most people because my whole family has FAP so its more common to all have ileostomy bags but o know I do eat a lot of riskier foods. My aunt has an ileostomy and served me the shepahrds pie so I guess i assumes it would be okay too but I think that’s my 100% no no list is now the Chinese food I ate was well chewed... [ more ]
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J-Pouch ForumsGeneral Discussion
Need Surgery
Asa LayAsa Lay
Winterberry Hello, Asa. I had the same tests prior to my first surgery: cardiologist for an ECG test (I am also diabetic) and an MRI to check liver and other organs to make sure the cancer did not appear anywhere else. I told my surgeon that I would not be able to tolerate the enclosed MRI. Even though you do go in feet first, your head also goes in all the way, trust me, we tried it and I scrambled off the table. He said he needed that MRI done no matter what, so he gave me a tablet called Ativan. I... [ more ]
CTB23 Hi Glad it worked out with Dr. Reddy. I haven’t used adult diapers since my surgeries, however I did use pads on my bed for a little while, about 2 months. I took a couple from the hospital. Did Dr. Reddy mention Kegels for spincter control. They helped a lot for me and you can do them anytime. I do eat tomato sauce, though I may have to use the bathroom during the night. Good luck with your surgery. Nice that it’s a two step instead of three! [ more ]
girlunky I returned to weightlifting between my surgeries and again after takedown with no issues. But I was methodical about training and started with extremely light weights. Each person has a different tolerance for this, consult your surgeon. Speaking of which, you still have a few weeks prior to surgery, you may want to work on strengthening your core muscles beforehand. Adding aerobic fitness is good too, some fast walking would be helpful. I am fully continent, the only time I have urgency is... [ more ]
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J-Pouch ForumsGeneral Discussion
Instead of antibiotics for pouchitis has anyone had luck with anything else
vallivalli
Mcalen ❤️
StillStanding365 I’ve had pretty good success with the herbal remedy Juglans Regia (English Walunt) gemmotherapy. Apparently it is antimicrobial and helps to restore and balance intestinal flora. It was prescribed by my alternative practitioner 8 months ago to treat 2 kinds of intestinal parasites that I had. It got rid of the parasites and at the same time I noticed it helped keep my pouchitis in check. I’ve had my pouch for 22 years and during the last year or so I was on antibiotics every few months. The... [ more ]
Francesca Actually listen to your own body and generally your right concerning what you can and can’t have. There are a lot of medications to choose from on the market Youre best to talk to your doctor about how medications effect you and go from there. Interestingly enough I’ve been having heart palpitations too since surgery so what does that say?? So as a result of that I take half a dose of Sotalol, drink plenty of water and take it easy. 🤔 [ more ]
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J-Pouch ForumsGeneral Discussion
Does butt burn ever go away!!
M Meli
RondaC I occasionally get butt burn. I found some aloe Vera gel with lidocaine for sunburns. I was wondering if anyone has tried this for butt burn? [ more ]
CTB23 In my case, butt burn has gone away. I had my final surgery in 2016 and I cannot remember the last time I had butt burn. I use Kirkland toilet paper and I have a bidet that I use occasionally. I’m not sure why I don’t and I don’t believe i’m doing anything special. [ more ]
Catinthehat Update to my previous comment: I now swear by Critic-Aid Thick Moisture Barrier Paste by Coloplast. Reasonable price and it works! (not too thick) [ more ]
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J-Pouch ForumsPouchitis
Threadworms
HG helen garner
clz81 My son has had pinworms 3 times in a year. We treated the whole family with both doses and did the proper house cleaning measures (ugh the constant laundry!!) . He hasn't had symptoms in about a year now. There was no evidence any of the rest of us had it. But I learned that at any point in time like 40% of all kids have it and don't even know it. They just think they have an itchy butt. Great way to spread the eggs all over the place. So honestly, I don't even worry about it anymore, but... [ more ]
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J-Pouch ForumsGeneral Discussion
Coping tips for a J-poucher... who has had her for some 11 or 12 years.. looking to talk with others very similar
DG Dancing Girl
Dancing Girl Yep, simple foods are best for me. I have an aversion to Metamucial as I was forced to take it, either the powder or the wafers for years. If I even think of it, I start gagging. I was away on a dance vacation for 8 days and we were fed breakfast and dinner. So many people complained about it. I was happy as a clam.. it was simple food.. what you saw, was what it was. Except for one night, when the fish tasted "off" and I fed it to a cute feral cat that was roaming the resort, I had no... [ more ]
Curly On my gastroenterologist's advice I take a tablespoon of Metamucil mixed in a half cup water (less water than the label on the container says) every morning after breakfast. He said the fiber helps "bulk up" the output. I find it helpful and it might be worth trying for those having a lot of problems. I agree that the same food can cause different reactions - I guess not having the large intestine means your small intestines carry the burden and seem to be very sensitive - it's just a fact... [ more ]
Dancing Girl Yep. I hear you. I don't think it's healthy to just/only eat vegetables. Besides which, it seems to me no matter what I eat (except spicy food and maybe too much roughage at one time) I have the same amount of going to the bathroom. ANd it's not predictable. I swear, I could have a cup of coffee, eggs, toast, bacon and half a banana and be fine one morning but that same breakfast, the same exact amount could send me into having to use the bathroom four times in a row. ANd I"m so exhausted in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
PMS Pain
C Charlotte09
LoveLife Hi there, my period have also changed and I also get very influenced by ovulation. [ more ]
girlunky Hi Charlotte, your increased pain could be unrelated to your jpouch surgery. When I was in peri-menopause (around 40+) I had unbearable pain, heavy bleeding that lasted 10+ days, and frequent periods. I exercise daily, so that did not help. Finally I went on the lowest dose hormone (birth control) pill and that made a huge difference. This was all prior to my jpouch surgery. [ more ]
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J-Pouch ForumsPouchitis
Flagyl side effects
RondaCRondaC
clz81 I had just replied to another post on Flagyl side effects. If the lower dosage was effective for you, talk to your doctor about going back to that. Also, while Flagyl is very effective, it does seem to come with more side effects than other antibiotics. There are plenty of other antibiotics that work for pouchitis that you could try (Augmentin, Cipro, Xifaxan, etc) that may have less sides effects. [ more ]
PouchLogic CT, I never let it sit on my tounge and I always have a metallic taste when on flygal and Cipro, even for days after stopping. I do agree that you should not let it sit in your mouth and swallowing much quicker is recommended. I can't comment on the headache though. Also I have never been on 3 500mg flygal before, usually 1 twice daily. [ more ]
CTBarrister Flagyl is not to be swished around the mouth and savored like wine. You guys need to power swallow it with copious amounts of liquid. You will only have a metallic taste if you let it linger on your tongue. There are certain things in life you have to get out of your mouth and down your throat FAST and flagyl is one such substance. Magnesium Citrate is another. I have no problem with it if I power chug it. It’s all mental- mind over matter! The other systemic side effects of flagyl are quite... [ more ]
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J-Pouch ForumsPouchitis
Tips on coping with Flagyl
T tracie
clz81 Perhaps you can ask to have your dose reduced. I'm chronically on antibiotics for pouchitis, but very small amounts are very effective for me. With Flagyl, I only take the 250 MG and get by with once a day. That's not typical for a two week dose, but still the 250 MG twice day may be sufficient. [ more ]
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J-Pouch ForumsGeneral Discussion
Degenerative Disc Disease and Arthritis
CowboyCowboy
Scott F Degenerative disc disease isn’t really a synonym for arthritis (which can affect any joint in the body), but understanding the condition as a kind of arthritis is reasonable. Some of these changes, however unpleasant, have no good treatments. That’s the case with the arthritis in my hands: steroids would help with the arthritis but would do more harm than good overall. OTOH when a single disc in my lumbar spine ruptured it was worthwhile (and essential) that I get it surgically repaired. [ more ]
BillV I have degenerative disks and arthritis in my lower back that resulted after being hit by a car in a crosswalk. I had a comprehensive examination by a neurosurgeon at the local medical college who detailed what surgery might be effective for my condition. She said the surgery was brutal, required a long recovery time and could possibly produce positive results in about 50% of the time. Bottom line: don’t do it. Instead, she said I should stay active, do activities and exercises that keep my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Up a lot at night
M maddie18
Jeff brady Hello . Similar problem for me. Up alot at night. Had my pelvic pouch since 1995. Any natural suggestions for frequent night time defecation? [ more ]
maddie18 Thanks Scott, I will indulge 💞🙂 [ more ]
Scott F Maddie, this has been discussed here frequently, and there are other good tips in those threads. I suggest you use this site’s Search function to find a few of those. One search term that might uncover some gold is “peanut butter.” [ more ]
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J-Pouch ForumsGeneral Discussion
Constant watery diarrhea 20+ times a day
P PARRR
PARRR Thanks Scott. First thing was to slow things down. The Opium is $260 for a month's prescription, so yes, using something else would be better, for several reasons. [ more ]
Scott F Parrr, I’m glad it’s going better. I suggest you be careful not to overdo it. If the stools get too formed you could have a different sort of trouble. For me the most useful goals are no urgency and reasonable frequency, perhaps 4-6 x per day. I don’t like watery stools, but anything with more structure than that is fine with me. I’d suggest continuing (or starting) the strong probiotic, which might work better now that it’s not going into a fire hose. After things have really had a good... [ more ]
PARRR Since taking the Opium Tincture, along with taking Psyllium husk "powder", things have calmed down. The watery diarrhea is gone, I have more formed stools, and my skin has healed. The jury is still out on whether or not this will continue, but it seems like this has promise. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone had some doubt about UC or Crohn's before surgery?
U UberC
UberC Thanks for everyone’s perspective and insight here. I guess it’s a good point in why not try the pouch. I would love to avoid a third surgery so maybe Ill just go for the pouch creation in step 1 even if there’s some doubt in my mind about my true diagnosis. [ more ]
Former Member I never had doubt myself; I hated the colostomy bag, that alone was enough to desire a j pouch, although until finding this forum I didn’t even know what a j pouch was; as when discussed with my Doctors and Consultant, it was always referred to as reconnection and nothing more. After being treated for UC for years, it’s only when my colon was removed was my Crohns diagnosis made. After such a diagnosis I was bluntly told, reconnection is no longer an option, due to its high failure rates and... [ more ]
CTBarrister Doctors attempt to project confidence in their diagnoses in order to maintain the patient’s confidence in them. I do the same thing with my clients, if they don’t think I am confident in the advice I am giving, what are they paying me for? That being said, IBD diagnosis is a tricky business and at the end of the day it really doesn’t matter. Whether it’s UC, Crohn’s, or Chronic Refractory Pouchitis (and I have carried all 3 diagnoses at one time), ultimately all that matters is response to... [ more ]
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J-Pouch ForumsGeneral Discussion
Medical leave after J-pouch reversal
FM Former Member
Scott F Elif, most J-pouchers can easily handle the schedule you describe. Most do no fasting and eat a normal diet. They have no urgency and can delay a bathroom visit for quite a while when necessary. They generally poop 4-6 times per day. Most go back to work about 6 weeks after their final surgery, particularly if their job doesn’t involve heavy lifting. Most J-pouchers aren’t on this forum to answer your questions, because they are busy living their rather normal lives, going to school or... [ more ]
girlunky I only take Lomotil when I'm having a lot of watery output. That happened with the ileo as well. Usually not more than once or twice a week. Not drinking liquids with meals helps. Protein + Fat foods are slowest. Simple carbs are fastest. Chocolate = watery output every time. If I'm needing to eat and not go for a while , peanut butter is perfect. I also can eat cheese as I have no lactose problem. Plain cooked turkey or chicken Too much soluble fiber makes the volume of my output huge and... [ more ]
Former Member My experience with immodium is not very good even with an ileostomy. It makes me feel as if I am having a blockage. I will take it if I have to in order to survive at work, of course. I should eat very minimally in order not to feel gross. For long meetings/events, would I need these meds only during the initial months/years, and be able to survive with slow digesting foods after? Is it very likely that I will depend on these meds for long events for the rest of my life? What are your top... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is it Pouchitis?
L lorna
CTBarrister There was a septum that developed inside the pouch. There were 2 procedures to correct it, the first in 1998 which resulted in its re-development, and the second in 2000 which was successful. I do not know exactly what Dr. Gorfine did in the second procedure ( you would have to ask him), but he told me he stapled/pinned back the septum that developed. What I can tell you for sure is that he went through the rectum with whatever he did. He did not cut through my skin. It was done as an... [ more ]
Steven Silz-Carson Pouchomarx2, this site unfortunately does not accept PDF uploads. However you should be able to download it for yourself here, or simply find it yourself using Google Scholar, Ok? https://www.researchgate.net/p...floppy_pouch_complex [ more ]
Pouchomarx link don't work [ more ]
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J-Pouch ForumsGeneral Discussion
Random questions about j-pouch
Smallville43Smallville43
Scott F Plain zinc oxide ointment is over the counter and non-irritating. [ more ]
Smallville43 Thanks everyone for your input. Going to contact doctor about this odd blemish as to what she thinks it is. Winterberry, thanks for tips, as for your food tips, that's exactly what I'm doing actually. Going to look into bottle, just haven't because it seems inconvient while at work. Is Zincoflax something you can get over the counter? [ more ]
Winterberry Hi, Christopher. Welcome to the group. To your first question, yes, it is normal for your new system to be very active day and night, and especially after eating. After you eat, your stomach has to make room for new food that's coming down, and any previous waste will enter your pouch looking for an exit. Your sphincter muscles will learn how to hold on as time goes on. It's also normal to hear grumbling and rumbling. It's gas or food moving through, more quickly than when your colon could... [ more ]
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J-Pouch ForumsGeneral Discussion
Vivomixx
AB Alison b
Scott F Alison, Vivomixx is the same formula as Visbiome (the “De Simone Formulation”). This is the formula that the current VSL #3 tried to copy, so Vivomixx should be exactly what you want, as long as you can afford it. [ more ]
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J-Pouch ForumsGeneral Discussion
Is it OK to work somewhere that doesn't offer dsiability insurance?
J moonsJ moons
J moons Thank you for replying. I will surely consider those. I was kind of thinking less stress may be worth the risk considering less future risk of complications whether it be bowel-related or heart related. Sorry to hear that you're permanently disabled YTcrockpot. [ more ]
Winterberry Hi, John. I vote for leaving the miserable, stress inducing job even though it offers insurance coverage. Yes, if you stay there you will have coverage, and you may likely need it because stress and misery in every work day for 8 hours equals excess adrenaline constantly coursing through your system, chronic insomnia, ulcers, stomach problems, headache, and just plain unhappiness. If you are able to go somewhere else, you are already lucky. Start with your first paycheque (and every... [ more ]
J moons ❤️
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J-Pouch ForumsK-Pouch Korner
Magnesium citrate
J JanW2
ET_RN Hi, Dr. Bo Shen is now at NYP Columbia. Best wishes [ more ]
skn69 Not sure if this will help but there are all sorts of natural teas that are supposed to help to cleanse the colon...I would consider them too harsh for K pouchers except in the case of emergencies or someone who has chronic thick output. You might want to experiment with strengths...sort of put the teabag in for only a minute and see how it works for you, then 2 the next time until you find the perfect strength for you. I also use licorice/mint tea that is quite good at getting stuff to run... [ more ]
Kim S Oh boy. Not the results you were looking for. Maybe experiment with 1/4 of a pill. [ more ]
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J-Pouch ForumsGeneral Discussion
Productive cough
J Janeuk
Winterberry A few weeks before my surgery to remove my colon, I developed a cough and then had congested sinuses. The cough meant that my surgery might be cancelled, and I didn't want to go through the emotional prep again, so when my doctor recommended that I use a nasal flushing remedy, I did and it cleared out my sinuses in a day. It was amazing (and gross) what is flushed out of the nostrils when congested by a cold or infection. I was able to breathe freely and my cough cleared up. The surgery went... [ more ]
TerryP Just to update I've had terrible joint pain now for 15 or so years , hips lower back & now hands last few years. Decided it was just luck of the draw & middle age. Joint pain got to a stage a few years back where what sleep i was getting was hugely comprimised with pain. So i was referred to a Rheumatologist after various scans etc which confirmed Sacriolitis grade 4 - Ankylosing spondiylitis-& everything else ending in itis. I was put on humira well 3 days after first injection... [ more ]
Janiep ❤️
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J-Pouch ForumsHelp! Need advice now!
Has anybody heard of Jini Patel Thompson and her healing protocols for people who suffer from IBS, diverticulitis, ulcerative colitis or Crohn’s disease? Have you had any success with her methods?Her website is called listen to your gut. .
F FelixGust
FelixGust Thanks Maddie18, I have started using the wild oregano oil too as I think I have had 25 years of steroids and antibiotic use for my UC. I have no doubt that my gut flora has been severely compromised. I'm not exactly sure with the protocols how I know when I have cleared the bad bacteria and replenished the good. I am definitely having some positive improvements such as more energy, less brain fog and generally feeling more well. I will keep going and reading her books because it is very... [ more ]
Jfill21 I've used Absorb Plus for years whenever I've needed to let my bowel rest or whenever I've needed additional nutrition in-between meals. Absorb Plus was especially beneficial pre-and post surgeries. [ more ]
maddie18 I think that is where I learned about oil of oregano being good for inflammation. It helps with pouchitis I believe. I use it and I haven't needed antibiotics since. I also use Pepto-Bismol. But I learned about Pepto on the jpouch group. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Grandson to be treated with fecal transfer
heverhever
hever Dear Janice, thanks for your reply and I'm glad you've had a good outcome, and don't we all blame our hubbies, thats their role in life I wish I could get a Kpouch or BCIR but can't get private health due to UC but very few surgeons do it here and you have to be insured so just have to accept staying with the end illeostomy My daughter has been given the poo injections to give to her son after he finishes the present course of antibiotics so were all hoping its a cure for all his gut... [ more ]
JanW2 Hi Heather, I had a fecal transplant a little over a year ago also for C diff , after other treatments didn’t work. I am doing fine now. There is really no recovery from the procedure, just takes a bit of time to get well from the illness you already had. They put me under mild sedation for just a few minutes and implanted it with the scope! Went home in a couple hours. By the way, I have had a K pouch for about 2 and a half years now and seems it is rare to get Cdiff in the K pouch, so far,... [ more ]
hever Hi Boxermama, Its good to hear that this procedure really helped you, gives us alot of hope for my grandson. He has a very limited diet due to his gut issues and this could be the answer to his problems because nothing else is helping him. His first transfer was due this week but now its been decided he needs antibiotic treatment first to kill off any bugs so he has the best chance of it working, so it has been postponed but should get underway very soon He wont be having an aneasthetic for... [ more ]
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J-Pouch ForumsGeneral Discussion
Paleo diet
M Mark01
TerryP Had similar problems years back, my take down courtesy of UC was 1996. i was strongly told then if I don't do major pelvic floor exercises for my butt, I would be wearing a nappy the rest of my life. So i crunched those pelvic floors out when ever i they entered my mind. hence to say no nappy today. Also this is out of left field but i had a injury long time back i am a professional Sportsman non competitive now. Where my doctor prescribed mersyndol forte 2 twice for pain relief , daily... [ more ]
NanJ I agree with CTBarrister. There is not one Paleo diet. The common theme is to eat real, whole, unprocessed food. I get annoyed when I read that Paleo is mostly meat. People during the Paleolithic period ate very different diets, depending on where they lived, the season, etc. In some regions people ate mostly meat, but certainly not in all of them. They did not eat food coloring, artificial flavors, preservatives, etc! I know a few people who greatly benefited from getting rid of... [ more ]
CTBarrister Scott F, That is not really true. The UMass IBD-AID Diet was developed by medical professionals at UMass Medical School based on scientific research and studies, unless you choose to believe that they are engaged in "junk science", and are frauds. I choose to believe that they are professionals. Since I am a UConn grad I hate to go to bat for UMass, but in this situation I will let them and their studies speak for themselves: http://www.umassmed.edu/nutrit...aid-diet-quick-view/... [ more ]
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J-Pouch ForumsGeneral Discussion
Have there been any new advancements recently (or soon to come) in the last few years for the J-pouch surgery??
P Pkitty
Steven Silz-Carson While there have been newer immunotherapeutic meds including the monoclonal antibodies, I don't think much has changed with respect to pouch construction, ...other than doing it endoscopically rather than open. I actually don't know when the "keyhole" colectomy became common, but it must be extremely difficult given all the tissue that must be cut, and all the blood vessels that must not in the mesentery. One thing that has apparently changed, and not for the better, is pre-operative patient... [ more ]
Scott F I flew to LA and had my surgery done by Bob Beart at USC. I believe he must be retired now, and I don’t know if they still have a program there. I went into it knowing that I had a real risk of pouch failure. My feeling was that the outcome of pouch failure was an end ileostomy, which was all that I was being offered by the refusing surgeons anyway (I was turned down by two). I probably underestimated the misery and surgery associated with pouch failure, but I still think I made the right... [ more ]
Pkitty where did you have your surgery done? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I have had a jpouch for several years and because of constipation of late I am eating fruits and vegetables
MIKEEYMIKEEY
MIKEEY Thanks so much [ more ]
winter wish Hi. I can’t find the tread but it mention one of the consultants saying that sometimes the pouch can get better at absorbing water and therefore slow down. Drink more and possibly more sport type drink (when you go more than 1 litre). I find vegetable purée works better. [ more ]
MIKEEY Winterberry- Thank you so much for your excellent response. Thank you for taking the time to respond to my question. Have a great day. Michael [ more ]
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J-Pouch ForumsGeneral Discussion
books for difficult times
duck11duck11
Winterberry Hi, Duck. A few book suggestions for easy reading that you can dip into, make a cup of tea, and come back to it. Different authors, they are also written in diarist-style, very gentle, takes you out of yourself to other cities and travels, New York, London, English pubs, tea rooms, small villages, historical homes and gardens, sailing on the Queen Mary, or a year living in the English countryside and all that comes with that. A Fine Romance (not related to the tv series) by Susan Branch. [ more ]
Paul H The Hundred-Year-Old Man Who Climbed Out the Window and Disappeared Novel by Jonas Jonasson Highly amusing, wierd, historical and different. I hope it'll take your mind off things and make you smile and laugh out loud. Paul [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Seronegative Rheumatoid Arthritis?
J jpouchman123!
mac I also battle inflammatory arthritis. My rheumatologist says enteropathic arthritis mimicking RA, lots of hand and foot pain although larger joints are effected too . Tried Imuran which didn't have much success so started on Humira. Still have joint pain daily but GI symptoms best they have been in years. I battled pouchitis and fistulas for a long time. Rheumatologist doesn't want to try anything different at this time since doing so well from a GI standpoint. Anyone have any suggestions on... [ more ]
jpouchman123! Sorry to hear you have this as well, I bet a lot of Crohns\UC folks have Inflammatory Arthritis; seems to be a pattern here. Maybe one day they can find a true solution to this terrible Autoimmune disorder. [ more ]
Andreita They said I have inflammatory arthritis [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Grand Canyon Info - Bathrooms?
SpookySpooky
Scott F @Lew - (spoiler alert) there’s a river at the bottom. Yes, I know that’s not what you meant. [ more ]
Lew I too was at the Grand Canyon a few years ago. We did a day trip through the park by car and finding a bathroom on the upper rim was not an issue. I didn’t take one of the trails to the bottom as it was a day trip in itself so I don’t know what’s at the bottom. Beautiful park, was a very enjoyable day! [ more ]
Clynn173 Upper rim is beautiful and plenty of clean, stocked, bathrooms. I was there a couple of years ago and it was just amazing. Totally worth it. Enjoy! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Bleeding
S samlc25
samlc25 I thought I had replied. I have an appointment with a new doctor (first time in 15 years), for April. I appreciate the responses as always. [ more ]
Scott F If a treatment isn’t working the best course is generally to try a different one, if the diagnosis is correct. This can be exhausting, irritating, expensive, and debilitating, but so is an inadequately treated illness. It’s possible to run out of treatment options, but you are nowhere near that situation. [ more ]
PouchLogic Sounds like a major issue, you are probably just having uncontrollable pouchitis. You really need to see a doctor and get this sorted out before your pouch is ruined if it isn't already. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Visbiome - Packets or Capsules?
S smcchick93
PouchLogic As Scott said everyone is different so your dose may vary. I take one packet regularly and sometimes I take two if I think things are off. [ more ]
Scott F It’s very hard to know how much is needed for “maintenance.” Many people will develop pouchitis only very infrequently without any probiotic at all. Since Visbiome is expensive as hell, trying a fairly low dose is probably a good idea, with a plan to explore increasing it if the frequency of pouchitis proves undesirable/unacceptable. [ more ]
smcchick93 For dose, is one packet/4 capsules a day enough for a “maintenance” schedule? [ more ]
See all 5 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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