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J-Pouch ForumsGeneral Discussion
Dr. Shen's Rubber Band Treatment
W Weda
Former Member ❤️
Weda Hi, Sandra D123 - I opted not to travel to New York to see Dr. Shen. I live in Colorado, traveling was not an option. I did find a Gastroenterologist who was highly recommended and familiar with the J-pouch. I have improved so much. The pain and bleeding have stopped. He had me take 4 capsules of the high probiotic Visobiome, every morning before I eat, which stopped the bleeding. I am also taking 1 to 2 pills a day of Tramadol which controls the watery dirreaha, which helps the severe pain... [ more ]
SandraD123 Hi I just got back from NYC to have Dr Shen do a scope as it has been 2 years since I have been checked. I have a floppy pouch and he did do the bands. 6 in total. When I woke up my rectum hurt. I took tylenol right then and we did the 4 hour drive home. I am hoping this helps my symptoms. He says it is a treatment that can be done many times to help with this issue. It definitely hurt when I woke up but nothing tylenol couldn't help. [ more ]
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J-Pouch ForumsGeneral Discussion
Gut-brain axis
CD Craig Donnelly
Former Member Before my quick onset uc I knew something was wrong as I was crying alot and had a feeling of sadness all the time.I would cry alot and I usually never cry.even waiting to see my family doctor I was fighting back tears and usually I would be angry because he always makes you wait along time and when I saw him I cryed and he said 75% of what he did was prescribing anti depressants.I was so worried to take them but even after the first pill I felt the most content I had in along time.less than... [ more ]
Former Member Thank-you so much for sharing this! I did not know this at all! Thank-you [ more ]
Former Member ❤️
See all 8 replies...
J-Pouch ForumsPouchitis
Pouch medications apo-doxycycline
S sudie
Scott F I took doxycycline for several months when I had small intestinal bacterial overgrowth (SIBO). It worked well, and seemed to be an effective replacement for the Cipro I was usually on. It did give me some abdominal pain, so I haven’t gone back to it. As CT says, I’ve had good success with high-dose probiotics (VSL #3 in my case). They are very expensive, though, unless your insurance will cover them. [ more ]
CTBarrister Sudie, The Camera Pill is not a treatment, it's a diagnostic tool. It is being mentioned because Crohn's may be suspected (did you have a recent pouchscopy?) Other diagnostic tests are the Prometheus Blood Test, the CT Enterography and the MRI Enterography, all designed to distinguish pouchitis from Crohn's. I had all of these tests except the camera pill. I think you are correct that it's an expensive and useless exercise. I would ask your doctor how will the results of the tests change... [ more ]
Former Member I am sorry you are going through this. Quite a few people here are taking Remicade on here, that is a biologic. I hear a lot of great things about it. Maybe you should suggest that to your doctor and see if he agrees. A lot of people on here have educated me about Remicade on here. One person on here told me that Remicade has a credit card or patient support thing or something similar to that, it is called Remistart I believe, I believe it helps with affording Remicade. I am not sure if it... [ more ]
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J-Pouch ForumsGeneral Discussion
Oil of oregano
AI Accept It
Accept It I've already stopped it and have a call into my doctor. Thanks for the replies. I appreciate it!! [ more ]
Jan Dollar Yikes! That sounds really dangerous! I certainly would stop taking it if I were you and seriously consider not resuming it. If you have developed an allergic reaction, the reaction could be worse later on if you resume it. Jan [ more ]
maddie18 Hi Accept it, I understand you are not supposed to take it for too many days before taking a break from it. it is not something we are supposed to take everyday on an ongoing basis. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch Revision Surgery
C Crazyred
Former Member I think I found a couple of sites, I hope these help you out. Let me know if you would like more https://nyulangone.org/news/re...atient-pouch-failure https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4882179/ *Dr. Feza Remzi has Youtube videos on Youtube that talks a lot about Revision surgery as well* I would go on his website too. He is an amazing guy [ more ]
Former Member Did they say why they think you need in a redo? What needs to be redone? Maybe your surgeon thinks you need advancement surgery? [ more ]
Scott F There’s a fair amount of information *here* about J-pouch revisions, so using the search function might answer the questions you have. If I needed it I would choose a different surgeon than the one who created the problematic pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Distended abdomen
GSGS
Former Member I have had a distended abdomen for about 11 years now. Everything is fine with me, I have been checked out many times and there is no known cause with it for me personally. I would suggest getting checked out if you are worried about it. Keep us updated and Happy New Year Dear [ more ]
Scott F This doesn’t sound like pouchitis to me. Have you noticed being more gassy during/after the distention episodes? If it’s gas we can talk about things to try to reduce that (e.g. Beano, SIBO treatment, etc.). Another possibility is frequent partial obstructions, which fits with the distention and discomfort. Obstructions can be tricky, but you might get relief from switching to a liquid-only diet at the first sign of trouble. You can also try increasing your water intake in general, which can... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Polyp Removal and Lots of Pain/Spasms
ktakta
Former Member Definitely sounds like the rectal cuff. Thank goodness the doctor got it out! I am sorry you had to go through this pain, I think it should feel better soon, if not, definitely contact the doctor. Keep us updated And Happy New Year Dear [ more ]
Scott F The rectal cuff is pretty sensitive, and it sounds like that may be where this thing was. It should start to feel better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Going from Jpouch back to Ileostomy
M Mpale033
SteveG Hi Danny, gas all night long sounds like bacteria overgrowth. Do you have no relief from antibiotics (Cipro & Flagyl together always helped me)? Several years ago I had a couple of weeks where I woke up every hour at night with slight stomache ache (but too much to sleep again) and I had to get up and move a bit until I felt better. So I know how exhausting that can be. Remission is also a foreign word for me by the way. But whatever happens, the most important thing is never to lose... [ more ]
fisherdan I would never agree to a loop! That was the most horrible time ever! Changing an appliance and it not immediately leaking was almost impossible! My skin was constant blisters all around and no chance for healing due to leakage! I have like 4 or 5 inches left from large intestine in rectum that I expect will be removed! I totally dread waking up from that surgery because my 3 surgeries were not fun! But for me not having to go through 3 pads every night and 3 under wear and clean the over... [ more ]
SteveG Hi Danny, your issues are even harder than mine. I don't have cramps or too much gas. I can ease my chronic pouchitis with budesonide, and once a month I take antibiotics for about one week (which has the best effect and reduces gas as well as any smell). My former meds include Remicade, Entyvio, Aza and Stelara. Now I'll try Adalimumab as a second TNF-alpha blocker. My permanent inflammation in the pouch and the ileum terminale has been diagnosed to be similar to Crohn's at the last scope,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipation?
L LIGuy11
LIGuy11 So, I ended up having Covid and the constipation issue is still ongoing. I went to my colorectal surgeon’s office where they did an in-office exam/scope and said I have some inflammation and would treat me for pouchitis, so they get me mesalamine suppositories. I thought with inflammation you’d have the opposite of constipation but I guess not. I took my 3rd suppository tonight but nothing is better yet. I guess it takes time. The doctor couldn’t confirm that this was caused by Covid, but... [ more ]
Former Member Peppermint tea helps alot.with ginger it biscuits and no more constipation but big clear out [ more ]
Former Member LIGUY11: I hear Squatty Potty works well too [ more ]
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J-Pouch ForumsGeneral Discussion
Surgical Advancements
FM Former Member
Former Member ❤️
CTB23 I had a temporary bridge for my loop ileostomy. It was annoying especially for changing the bag. It was for a very short time. I guess some surgeons use them to avoid retraction of the stoma, but there is debate as to whether it is really necessary, I guess. I was really glad to see it gone. My pouch was stapled. [ more ]
Scott F Most surgeons use stapling. It gets better results overall, but leaves behind a rectal cuff which sometimes causes trouble. [ more ]
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J-Pouch ForumsGeneral Discussion
carnivore diet with j-pouch
J jdev
Sos ❤️
grateful Yes that is what I thought. I was taking it to prevent getting pouchitis. I wholeheartedly agree that not everything that works for one person will work for another. Thanks Scott for your reply. Happy New Year! [ more ]
Scott F @grateful I take a lot of VSL, but I sure wouldn’t do that if it made me feel worse, or if I had no pouchitis issue. [ more ]
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J-Pouch ForumsGeneral Discussion
Covid Vaccine, Ulcerative Colitis/J-Pouch
I iHateColitis
lclassen ❤️
iHateColitis Thanks Scott. That makes sense. [ more ]
Scott F States will vary in how they adopt the CDC recommendations for vaccine prioritization. The CDC’s language for folks at higher risk is “ underlying medical conditions which increase the risk of serious, life-threatening complications from COVID-19.” I have some concern that these criteria (identification and verification) may be managed poorly in the rush to get a huge number of people vaccinated. Nevertheless I don’t see IBD or related diseases on the list of underlying medical conditions. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Difficulty, painful emptying - Stricture? Hemorrhoid?
S Sunflower70
PATRIZIA Dear all, My pouch was good for almost 19 years, though the last few years I noticed the need to start putting pressure in order to empty, which caused swollen hémorroïdes internal and external. And also twice flebitis in my right leg, none of the doctors would recognise the link between putting pressure to evacuate the jpouch and swollen uncomfortable veins in the leg. I was told to drink a little amount of olive oil (2 table spoons) on empty stomach which did help then I started having to... [ more ]
kta I panic too. We have been through a lot and it is hard to think about more. So sorry for your problems. [ more ]
Former Member Glad you are doing better [ more ]
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J-Pouch ForumsGeneral Discussion
Life after j pouch surgery-
J JoeJoe
Scott F Thanks, Jan. You provide the voice of reason, as always. It’s worth adding, I think, that the rectum we are born with can prolapse, too, though it’s somewhat less prone to prolapse than a J-pouch. Heavy lifting carries risk, and each of us gets to balance that risk against the value it provides us, ideally with measured information about a difficult-to-predict situation. [ more ]
Jan Dollar I have to agree. There have been numerous debates about lifting, including pretty minor stuff that is part of of everyday life. The caution from some doctors (other than the general post op recovery restrictions) is not so much about hernias, but about pouch prolapse or rupture. Rupture is very rare and mostly associated with pouches with pre-existing problems. Prolapse is less rare and is associated with anything that causes sustained or repeated increased intra-abdominal pressure. This is... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Lifting weights and exercising
J Jaydog
Former Member For me the first thing to go when I got sick with quick onset uc was my muscles that I had worked hard on.I was just flapping skin and bones.which taught me it's not the size of your muscles but the inner strength that's important and doing too much weightlifting releases the stress hormone cortisol that causes inflammation.I will still lift weights but I will take it alot easier and mainly walk as walking strengthens your core and helps with digestion.walking pretty much does a full body... [ more ]
atimko I had my pouch done while in the Army. once I recovered from the surgery, i was able to do all the things that were required by the Army. I spent a further 5 years in the Army before retiring. I am not a big weightlifter, but don't see any issues with you doing it once you have recovered. The only limitations i ever have is that if i am doing an outdoor activity, i always want to make sure there is a bathroom available. [ more ]
Former Member I think he was talking about me to you. He has said things like that to me in the past before. I wish people would not do things like that but oh well lol. [ more ]
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J-Pouch ForumsK-Pouch Korner
Sad news
skn69skn69
tf Very sorry to hear this. Every person on this site in one way or another has helped with their knowledge and experience. My they RIP [ more ]
skn69 They were both members of the BCIR family...and most (although not all) have at one time or another come here for help, advice, and support...I am not sure either but I suspect that there may be some of us who knew them. Sharon [ more ]
Jan Dollar Sad news indeed Sharon. I have not been on the j-pouch site much lately and do not recall them. Jan [ more ]
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J-Pouch ForumsFAP Forum
1 year after jpouch
BorislavBorislav
Midnight Lady I go a lot as well. Sometimes, it is never ending and yes, it can be exhausting. Start keeping a diary and try and figure out if certain combinations of food help you. It is not the same for everyone but for instance, if I eat a starch with other food, it seems the starch (in most cases) absorbs some of the acidity of foods and causes less burn. I also have found that some foods can be eaten in small amounts by themselves but if I eat more than a small amount of that particular food, I have... [ more ]
Former Member I go 13-20X a day and its been 6 years, maybe you are just meant to go that much to be honest. [ more ]
arash.ch hi to every one 3 years ago doctors saye i have fap and i surgery for remove all the colon for 1.5 years i have ilestomy .(leaking of pouch for 1 years) after that the leak is stop and close the ilestomy in this 1.5 years i burn very very each time i used gell of ledokaeen but some dayes is good some days is very very bad i eat tea suger .Lavash Bread (iranian withe bread ).peanut butter . and many things dear borislav wath is your problem ?? who your burn is stoped??? i burn for 1.5... [ more ]
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J-Pouch ForumsGeneral Discussion
Marijuana
J Jaydog
Midnight Lady The person mentions that CBD was irritating to them so that is not an option. But I urge them to try lots of different forms!!! I have found a lot of help for many things that ail me.. headaches, insomnia, pain and more! So many different products, profiles, ingredients, delivery methods. It's a miracle. I hope they live in a state where it is legalized or recreational! And if not now, then maybe soon! These times they are a changing. It is ignorant to say a blanket MARIJUANA IS UNHELPFUL,... [ more ]
thumprhare Yes, it can be extraordinarily helpful beginning with micro doses of 2:1 (CBD to THC ratio) and using edible forms especially at bedtimes. I have patients that have gotten off biologics and changed to different medicines. I can say no pouchitis, better sleep, nearly no joint pain and I can now eat most anything. Treat it like medicine and will behave like medicine. [ more ]
Dancing Girl I have been trying different forms of marijuana and different profiles. I have found some really work for certain things. It has been trial and error but perhaps you can find a helpful dispensary and helpful sales person and try different things/forms etc and they can help you out. The range now a days, is amazing and impressive. [ more ]
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J-Pouch ForumsGeneral Discussion
UC and Bronchiectasis
RedRockerRedRocker
Former Member You are resilient Are you taking medication for your lungs??? [ more ]
RedRocker Thanks Lauren. I’ve had Bronchiectasis for 25 years now and yes, I’m making it through it. 😉😁 Our gut and bowels really affect so much of our bodies! I found the lung thing so interesting. [ more ]
Former Member I never heard of that before, I just looked it up now and I see that there are definitely articles on that! I am not surprised that it is true though. I recently found out that IBD can cause eye problems, gall stones, and kidney stones along with kidney problems. Its interesting how damaging IBD can really be and what it can cause, its definitely not limited to the digestive tract. I will say that I believe IBD has made my asthma worse probably. I am sorry you got diagnosed with... [ more ]
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J-Pouch ForumsGeneral Discussion
Stools have changed to very large and formed for 2 months with bloating and pain
GEB56GEB56
GEB56 I 100% agree kta! My husband and I have been trying to figure out the ropes on how to be referred for a second opinion. My surgeon seems uninterested in doing any tests. Unfortunately, only 2 hospitals in Toronto do Jpouches and, I believe, only 3 surgeons. I am sure one of my problems is pouch prolapse. I make suggestions, but am not heard. I am well versed about my medical condition. Exams/pouchoscopies are always lying down. The pressure in my anal canal and pelvic/genitourinary area is... [ more ]
kta Another surgeon needs to look at this. I know as my issues get more complicated, it seems no one really agrees on what is happening. It is very frustrating. I just think our (J Pouchers' issues) are pretty complicated and a few opinions might be helpful. Be a squeaky wheel. Easier said than done. [ more ]
Former Member You are welcome! I hope things get better and keep us updated [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch Decision
P PureSuspect
kta I had my pouch done in 2004 as well. It has its ups and downs, but usually is not so horrid I want it gone. I have been on antibiotics for 14 years straight - it is the only way the pouchitis stays away. I take Augmentin, Cipro and Xifaxan - rotating each for 2 weeks. It works well. I am also now on Humira and that has helped a lot. Definitely talk to as many docs as you can. I say that and I am avoidant in reaching out to docs; I need to follow my own advice. I hope all goes well. [ more ]
Former Member I sent you a private message [ more ]
PureSuspect Hi All, I really appreciate your feedback. I emailed my GI doc to see if she can switch me over to Remicade to see if that helps. Antibiotics help while I am on them but as soon as I am off the course (usually 10 days), it gets right back to the way it was. I tolerate Cipro much better than Flagyl. What my Kaiser CR surgeon said was that he could attempt to remove the structured area but there is a high risk of losing the pouch. He also mentioned that he could not remove the pouch and create... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain in prostate??
D DJJ2019
Former Member Your welcome. I am glad you are okay! Happy New Year DJJ [ more ]
Scott F It’s great to hear that things are better! I’d suggest a discussion or visit with your doctor for longer-term planning. [ more ]
DJJ2019 Update: I've been feeling a lot better since taking my prostate medicine (Flomax) that I had prescribed this summer for Prostatitis. I think the culprit is long drives that irritate the prostate, so when I get the normal pressure from gas or having to go to the bathroom from the pouch, it puts even more pressure on the prostate. Anyhow, the pain seems to be gone. I'll be taking Flomax for a few weeks until I know I'm in a good spot. Thanks for the support. [ more ]
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J-Pouch ForumsGeneral Discussion
If your a J-poucher that has trouble emptying, try SQAUTTY POTTY
FM Former Member
Former Member I am glad you have a method that works for you [ more ]
CTBarrister My surgeon told me to do this from Day 1 after surgery. What I also found helpful is, after the second sit down, to contort/stretch my upper torso sharply to the left as far as it can go. Although twisting to the right might work better for others. Can't hurt to try both. For a person with a J Pouch, what you have suggested will likely work better to assist the emptying process than any particular type of toilet. And it's also free! Woohoo! [ more ]
Rev Lenny ❤️
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J-Pouch ForumsGeneral Discussion
Tummy tuck and J pouch
K Kh1988
Former Member LOVE LOVE THIS!!!! I feel the same way, J-pouch is life! I believe its our happy ending [ more ]
Connie Gildersleeve I had a tummy tuck five years after my j-pouch surgery. The only problem I had was a partial blockage three days after my tummy tuck surgery which sent me to the hospital. They gave me IV fluids for 24 hours and thank goodness I was able to evacuate my j-pouch. Because of so much vomiting I ripped my stitches out and had to heal without them re-stitching. The best advice, I can give you is don’t eat the entire day before except drink plenty of clear liquids then after surgery I remained on... [ more ]
Scott F It appears that the Zantac (ranitidine) recall applies to the injectable version as well as the tablets. The NDMA contamination affected all the formulations, so the drug isn’t currently available, at least in the US. [ more ]
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J-Pouch ForumsGeneral Discussion
Foods to eat after j pouch surgery
J JoeJoe
Winterberry Hi, JoeJoe. While I was still in hospital after my takedown surgery, I was on their liquid diet (clear broth, jello, clear broth, jello) until my first gas, and then I was allowed solid food. I asked for egg salad sandwich on plain white bread. It tasted like a gift, it was so good. Easily digested, full of protein, which you'll need a lot of to heal. It produced soft stool for my new pouch. At home, I ate one egg per day for protein. Lost of fish, chicken, white rice, plain pasta with pesto... [ more ]
Former Member You are soo right! Soft foods for sure. I did a low residue diet as well. Vegetarian food in my opinion is easier to digest and I think its better, at least in my experience it was/is. Drink water: Before, during, and after ever meal too to avoid blockages. A low carb diet might help too. Foods Allowed on a Low Residue Diet refined grain products like white breads, cereals, and pastas (look for less than 2g of fibre per serving on label) white rice juices without pulp or seeds meats, fish,... [ more ]
girlunky All the above, plus greek yogurt, cream of wheat cooked cereal, cheerios, low-sodium v8, smoothies, peanut butter. Switched to liquid vitamins. Basically baby food, and not too much of it. [ more ]
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J-Pouch ForumsGeneral Discussion
Tests/Imaging to request?
M Mpale033
tvstahl Michael, the thought that came to my mind was that I would get back to your surgeon. I say that because I have never found a GI Doc that was nearly as comfortable with my J Pouch as my surgeon is. I have tried my long term GI Doc (did one pouch scope but was uncomfortable to be my doc for that) and a new highly recommended GI doc who did no better. So I am not much help but my bias is strongly toward the surgeon for non-routine j pouch issues. Happy New Years and I wish you the very best. [ more ]
Former Member You are welcome! Let us know how everything goes Happy New Year Dear [ more ]
Mpale033 Hi there. Thanks for the heads up on the MRI I will inquire about it. As far as CDIFF goes, I do not have issues with diarrhea really. Just a lot of pain, soreness and distended bowels. Thanks everyone. [ more ]
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J-Pouch ForumsGeneral Discussion
5 week update
J Jaydog
Former Member I totally agree! I am a firm believer that Alcohol is a big no no, especially when it comes to IBD people, FAP people, and Cancer people. I have not drank in almost 7 years; I never drank with my J-pouch and I never plan on it. I am trying to keep my J-pouch forever if I can. I am glad you and JayDog gave up drinking too If they are your real friends, they will not mind that you cannot drink, if someone starts to pressure you into doing so then definitely drop them as a friend. I did not use... [ more ]
Former Member Yeah pizza got me on the first week because it's hard to have just two slices. Beer,pizza and cheesecake have all got me because of having too much. This jpouch is like a built in personal trainer that punishes you. [ more ]
Former Member ❤️
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J-Pouch ForumsWomen's Health & Pregnancy
First time pregnant
C Colonlessnurse
Bubba1028 Congrats! It’s completely up to you on whether you want to deliver naturally or have a planned c section but my surgeon also suggested a c section for my baby (she’s almost 2 now) simply because we only really get one chance at the j pouch creation. Pushing, she felt, might significantly impact the pouch, cause a prolapse, etc. she didn’t suggest risking it. I didn’t want to be with an ostomy long term so I just went with a planned c section which was a breeze compared to the colectomy and... [ more ]
Former Member ❤️
Former Member CONGRATULATIONS!!!! A lot of J-pouchers/ostomates have trouble getting pregnant since we have a 50% reduction rate unfortunately. CONGRATULATIONS!!! I would definitely recommend a C-section, I was told that by more than one surgeon. I do not have kids but if I ever did biologically, I would definitely do a C-section. By the way, If you are are able too, I would definitely recommend to breastfeed your baby for at least 2 years or longer. Breastfeeding babies helps reduce the chances of your... [ more ]
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J-Pouch ForumsGeneral Discussion
Liver
skn69skn69
skn69 Thanks CT, They have ruled out fatty liver disease...I was pretty sure that it had to be that but my surgeon reviewed the results and concluded that it isn't that... The search continues... Happy 2021...may it be better than 2020 was! Sharon [ more ]
CTBarrister Sharon, My liver enzymes have been elevated for a while and they are calling it fatty liver. [ more ]
Former Member THanks!!! Same to you! Happy New Year Dear! [ more ]
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J-Pouch ForumsK-Pouch Korner
Pain on right side
amosamos
Former Member Your welcome, hope things get better. I would see a gastro at this point. [ more ]
amos Thanks for all replies. I went on lyquId diet for a week. Seems like bleeding has stopped and pain is gone and all the loud gurgling has stopped. Started eating again and gurgling is back and I still seem to have to with my fists push in just below ribs and rotate downward to get pouch to empty and to get rid of gas. [ more ]
skn69 Hi Amos, Hi guys, When I think about the upper abdomen I think of either gallbladder or liver. I also think of gastritis. Does the pain change according to what you eat? Do fats and fatty foods make it worse or not? (sign of an unhappy gallbladder) Is it worse or better if you do not eat? (fasting gas, burning and nausea could be a sign of gastritis) Are you burping more than before? (dyspepsia?) Do you have heartburn? (Gastric reflux?) Does the pain radiate to your back (middle back to... [ more ]
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J-Pouch ForumsK-Pouch Korner
What do you typically eat in a day ?
R readann
skn69 I've had the same routine, more or less, since 1991 when I read the Fit for Life book and found a solution (for me) to a lot of my pouch problems like digestion, pouchitis and thick output. Mornings are only fluids, water, juice, black coffee. That allows me to clear out my pouch 100% At around 10am I eat a banana or other fruit. Sometimes more. Depends on the day and where I am working (outside or from home) At noon it is usually a protein with a vegetable. It can be cheese with cherry... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch help
KV Kathy V
Linzalisha So sorry for your husband must be horrific. Flagyl and prednisone both oral and suppositories may help and remicade. They all helped me and my 31 year old pouch. Good luck. I really hope he gets the relief you both deserve to be happy. 💕💕💕💕💕 [ more ]
Former Member I am sorry dear!!! Has your husband tried Mesalamine suppositories/ enemas??? Or Biologics??? [ more ]
Bobster I think both responses are excellent. I will also say that I have been on many courses of Prednisone and Entocort for flare ups over the years. Entocort worked just as well as Prednisone for me and with less side effects and has worked rapidly (24-48 hours). [ more ]
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J-Pouch ForumsGeneral Discussion
Stelara
RondaCRondaC
Marc Lawrence After sporadic bouts of pouchitis, my GI doc put me on Entyvio in 2017. It has cleared up the inflammation and ulceration in my pouch, and I have been good ever since. An infusion every 8 weeks. [ more ]
RondaC I didn't have side effects from Remicare or Entyvio. [ more ]
Former Member I am very happy to hear that [ more ]
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J-Pouch ForumsGeneral Discussion
Blood in stool after jpouch takedown
J Jaydog
Former Member A few people on here have posted the same thing and it went away after a while. I would follow your doctors advice [ more ]
Ryan138 I had same thing a few weeks post take down...it was only a few times and went away...my doc said it’s normal with new pouch [ more ]
Jan Dollar Ileal tissue bleeds pretty easily, so the bleeding could be from your straining. Perhaps you have some restriction from your ostomy takedown and straining against it is causing trauma. If you have some retained rectal tissue, that could be bleeding. If it was something more serious like a ruptured blood vessel the bleeding would be more brisk and heavy. If it was acute cuffitis, you would have other symptoms eventually (like pouchitis). Since you have followed up with the surgeon you should... [ more ]
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J-Pouch ForumsK-Pouch Korner
Painful Pouch
B BrianL.
skn69 Irritation, inflammation, a slipped or adhered pouch...If intubation has not changed then your pouch probably has not moved...if your output is normal then it may not be pouchitis (it usually changes the quality of the output to either bubbly, liquidy or stinky), it could be a pouch ulcer (you did mention Crohns) or some other kind of irritation...but all of those require either a pouchogram or other sort of exam... Can you go onto a liquid diet for a few days and see if that helps or not? [ more ]
Former Member Scar tissue can weigh that much???!!?!!!! I am happy you are doing okay though [ more ]
Tanner Scar tissue is a big problem the older you get. I had it taken out after 20 years. I had so many blockades. Now 17 years after that I have 15 lbs of scar tissue and they will not take them out unless I am super blocked! Water water water! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Another painful sex question
T Twilight
skn69 Hi Ladies, I have a K pouch and total proctocolectomy, had it done when I was 18 so I had pretty much no experience prior to it. I've had quite a few revisions too. I learned a few things over the years. Firstly, fear is a major game-changer, it stresses you out and makes the pain worse. It destroys even the slightest chance for spontaneous enjoyment. Next, our biology no longer resembles that of other women. So we need tricks. Sometimes it is a position thing, you may need to try putting... [ more ]
Former Member Yeah, I agree. The bright side is, at least were okay. [ more ]
kk That sounds like it could be true but I had never had sex before the j-pouch age 20. It never hurt until about the last ten years so for me I would chalk it up to what a lot of women experience getting older. It could possibly happen sooner if like me there has been a lot of irritation in that area due to complications with the skin because of what goes along with having a j-pouch or at least my experiences. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Merry Christmas Everyone! :) What Christmas Present are you giving to your pouch?
FM Former Member
girlunky Merry Christmas Jpouchers, kpouchers, ostomates and all. Kind of jealous, I had to give mine a day off from food due to gas pains and a rough night last night. So I missed out on the spanikopita, Greek salad, meatballs and homemade ravioli I made. [ more ]
Kmiller Y'all are making me wish I would have actually cooked this year. Sounds good! [ more ]
Rev Lenny ❤️
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Can't pass gas I'm in pain
A Andreita
Mary F I am so sorry you are in such pain, and it sounds like you took medication appropriately. Pain is a warning sign that something is wrong and needs to be addressed. The pain you are experiencing may be due to more than just gas. What does your health provider say? I was having horrific pain which turned out to be a stricture of my J-pouch, which needed to be treated surgically. You have probably already tried, but a heating pad, and physical activity/exercise like sit-ups have helped me when... [ more ]
Former Member I am sorry to hear that Andrina! I get symptoms like that if I overeat 2 days in a row; when I get like that, I take two bottles of Magnesium Citrate and it works miracles, all the pain is taken care of within a couple hours along with the constipation being gone. After I get fully cleaned out by the two bottles, I stay on a liquid diet the next day for bowel rest. [ more ]
Andreita @Scott F the juice helped thank you so much @Jaydog I will also keep trying your suggestion thank you so much Appreciate you guys [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
Getting a permanent ileostomy
B blood_stained_warrior
Caty Hello, People deal with medical issues on their own terms. I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy. In 2007 after 15 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband. The ET nurse and I found the perfect spot together. If a person is working with an... [ more ]
Winterberry Hi, Blood Stained Warrior. As you go through the process of information gathering and research, another source of knowledge can be peer resource, or a peer patient. If you reach the point of talking with a surgeon, you can ask him / her if you can talk with one or two of their patients who have gone through the surgical procedure. Some doctors keep a roster of former patients who are willing to be a peer patient, or a peer support. You can ask your peer support all kinds of personal... [ more ]
Former Member Do you take the catheter with you when you go out??? If so, what do you put it in??? [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
25+ years of J-pouch
Melissa (MCJ)Melissa (MCJ)
Bobster I have had jpouch for 28 years- now 61 years old. Diagnosed with Crohns Disease about 15 years ago. Treated with antibiotics for many years, sometimes steroids. Most recently treated with biologics. Hopeful jpouch lasts as long as I do. [ more ]
DoughBoyInPHL78 Hi all, j-poucher here as a result of a hereditary gastrointestinal disorder which stems from an error occuring in the genetic code/the chromosome #5 better known as the apc gene. In my case it was mutated from birth, and, like my late father, i inherited familial polyposis that he likely inherited from is father. My jpouch turned 19 years old this past October, 15. Of note, I had sub-total colectomy when i was 23 not a total colectomy which is the norm/standard. My condition has improved as... [ more ]
Former Member ❤️
See all 13 replies...
J-Pouch ForumsGeneral Discussion
what foods cause you butt burn?
lovedby2lovedby2
Melissa (MCJ) Some foods that are butt burners for me that haven't been mentioned are pepper and cranberry sauce. Then there is the list of what I call "butt scrapers": crackers, the real crunchy kind, if eating too many, nuts also if eating too many! They effectively end up giving butt burn. I use calmospetine and have for over 25 years. It helps as things start to slow down. [ more ]
Former Member Spicy foods!!! WHOAAA! lol [ more ]
NMGuy I salute Michael cause I tried for years to control different foods religiously, but I feel you can never totally eliminate the burn, only minimize. All the minimizing schemes I tried turned me into a Slave of crappy foods. I like good food and just decided good food/drink was going to be part of my life. My solution was Pampers sensitive wipes and at home a shower hooked up to hand wand for rinsing when I'm not rushed. For the shower rinse I don't even wipe, just dump the pouch in the... [ more ]
See all 23 replies...
J-Pouch ForumsHelp! Need advice now!
Pelvic floor dysfunction
MIKEEYMIKEEY
MIKEEY Robb-I did get your message this morning. I think I told you I went to Cleveland many years ago and saw Dr Shen , had problems with J pouch, but he did not help me. Robb, I am very positive the exercises and other things as you say a bit embarassing is all the same as you got, I know they did quite a few tests and think eventually it will help me, I pray. I thank you for all your help, and I will keep in touch as I wish you will, I live upper West side in NYC, so I won't take public... [ more ]
MIKEEY Robb77- I sent you a private message yesterday just wonder if you ever received it? [ more ]
Former Member Hey, I was off my computer, sorry for the delay. I got your response, I responded back [ more ]
See all 12 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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