J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
AMAZING!!!! Glad your better [ more ]
I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi Sharon- I thank you so much for all your help and advise, it is so appreciated. Yes, I am happy and agree , happiness is a gift we give ourselves. Take good care and may God Bless. Stay well and happy Michael [ more ]
I've got a K pouch which means that my output leaves through a catheter. I eat all berries especially blueberries, blackberries and raspberries...Strawberries need to be very ripe for me to eat them. I peel my grapes. Yup, I got into the habit when I got my K pouch. Apples get peeled but most pears do not; Peaches and plums are iffy...it depends on the variety. I have more problems with citrus...as well as mellons...they need to be ripe. I tend to get blockages easily these days so I am... [ more ]
You are welcome My dear! Thank-you for being soo nice [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsK-Pouch Korner
Thank you Sharon! [ more ]
I cross my fingers for you...hopefully this is an answer... [ more ]
I get notifications of posts on this subject. Having been to the dr yesterday, I wanted to share an update on the diagnosis. I thought I was having an interstitial cystitis attack last week and got myself to the urologist. Had been to him March of last year to discuss the issue of this thread. Bottom line here: the bladder and bowels (even the pouch) share the same nerve. I am absolutely feeling discomfort in the bladder region and need to empty the bladder. The pouch is not sending the... [ more ]
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J-Pouch ForumsGeneral Discussion
Just had potato chips today [ more ]
No problem, anytime [ more ]
Fight like a girl: thank you for your input and suggestions! It’s so great to hear suggestions and experiences on this site! So many of us have tried things and have different outcomes, but it’s good to hear what works for some of us, or not! [ more ]
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J-Pouch ForumsPouchitis
Hey!!! How did your appointment go today??? [ more ]
Okay perfect! You can use that statement of having them in the past as a good explanation on why you need the "Pottasium Citrate 1080- 4X a day" Definitely make sure you bring that up on Friday about having them in the past, that will for sure help your case! [ more ]
No...I've had a couple kidney stones in the past. Not since 2018 though. I had one procedure for a retrieval of one and the stone wasn't even there by the time they went in. What a waste. I was in so much pain afterwards for nothing. [ more ]
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J-Pouch ForumsGeneral Discussion
Yeah, a lot of people do not agree or they try to shut down what I say regarding that but its medical facts. Talked to many people that happened too. For exercise: I just dance, ride my bike, or run; but I mainly like dancing. Do not do anything extensive though for long periods a time, that can cause problems too. I try to stay between 30minutes- 1hr. [ more ]
Really ? I never knew that !! You learn something new everyday ! 😊 [ more ]
Thank you for sharing your experience . with regards to take out food I was worried of contamination after the food is cooked like if the cook / server coughs or sneezes . so thought reheating food at high temperatures might help . Not sure though . Yes its true It made me feel safe physiologically 😀 I would love to go and stay at a hotel just for a change . I will be happy if the maids and room serivce does not bother me 😂 [ more ]
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J-Pouch ForumsGeneral Discussion
I also developed a cough. I went to lung Dr. in my area. He sent me for multiple tests, could not find anything. The lung Dr. actually told me to go back to my city Drs. I called my Gastro Mt. Sinai he told me to call Dr. DePalo Lung Dr. also Mt. Sinai. I took all tests that I had on LI gave them to Dr. DePalo. He looked at all tests and MRI. He told me I have bronchiectasis. He gave me an aerobika device . It is a breathing device. He told me to use it every day. I have ulcerative colitis... [ more ]
Almac- that sounds like asthma all the way! I would see a pulmonologist instead of PCP. Pulmonologist do a better job at diagnosing stuff. And acid reflux, I would try Pantoprozole or Omeprozole [ more ]
I had a difficult-to-diagnose cough for a few years that turned out to be asthma, though I’ve never had an asthma “attack.” The diagnosis required a specialized test called a methacholine challenge. Finding the right steroid inhaler did the trick for me, but it took a lot of trial and error (and fighting with the insurance company once per year for approval). You also mentioned reflux, and whether or not that has anything to do with your pouch it can certainly cause a chronic cough. It would... [ more ]
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J-Pouch ForumsK-Pouch Korner
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J-Pouch ForumsHelp! Need advice now!
Glad you are better dear! What you said made sense! Would definitely recommend to drink water: before, during, after every meal. [ more ]
thanks Doug. I have used heating pad and warm baths today. It’s the only time I have complete relief. And Lauren, thanks for the well wishes. I’ve actually had a hernia, and this one is definitely not a hernia. It’s a feeling of bloated/swelling/tenderness in m entire pouch. It’s moved into my small intestines now, but overall it is subsiding (I think). I think the feeling I’m having is my bowels recovering from the many many raw carrots I ate for lunch the day this all started. Lesson... [ more ]
Oh dear! I am sorry! I hope everything gets better. It sounds like a hernia, but I am just guessing. If it keeps hurting there, I would definitely recommend to see Gastro and get radiology work done, that will tell us everything. Keep us updated [ more ]
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J-Pouch ForumsGeneral Discussion
I go 13-20X a day, I have watery output sometimes too. I have anywhere from water to mashed potatoes to vegetarian popcorn chicken nuggets to all sorts of consistencies, all of my pouchoscopys were normal. I am not that experienced with pouchitis but maybe seek out a gastro and ask him. [ more ]
I also experience variable consistency, but I would be concerned by 1.5 years of consistent watery stools. It's not appropriate and you could be experiencing more water loss than you need to. Dehydration and other issues could loom. It's a situation I would try to get a handle on one way or the other. Whether through dietary experiments, fiber experiments or a scope. [ more ]
Lynn, the effect of *soluble* fiber (like psyllium/Metamucil/Konsyl) should be relatively quick, since it’s just a mechanical effect. I take it just before breakfast and dinner, since I want it to mix with food, and I find the powder works much better than the capsules. Some people swear by it (I’m a fan), but others do experience bloating and gas (that sometimes diminishes over time). You might want to try the unsweetened stuff, like Konsyl, in case the sugar load is causing trouble, but... [ more ]
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J-Pouch ForumsGeneral Discussion
I am sorry you are suffering! NSAIDS are not reccomended for J-pouchers, it can cause damage. I do not think you should take that unfortunately. Maybe Lyrica might help??? Maybe you should suggest it to the doctor. I read some comments on here that said arthritis is not Crohn's related; Arthritis can in fact be Crohn's Related, it can even be Ulcerative Colitis related. Doctors have confirmed that. [ more ]
I’m sorry you’re going through this, Gin. I had disabling elbow tendinitis last year and I was convinced that it had to be something very serious. Fortunately I listened to my doctor and found a good physical therapist. I only needed a couple of visits, but I faithfully did what the PT recommended and the elbow problem slowly resolved - it’s back to normal now. My hands are a different story, and the osteoarthritis can’t be so easily fixed, but on the bad days I get some relief with NSAIDs... [ more ]
Just got a diagnosis from the rheumatologist, and not happy at all. He says the tests showed no specific markers for arthritis except in my thumbs & wrists -- 'normal' age-related osteoarthritis. However, the back pain wakes me up at night and the elbow pain on both sides is so bad I can't even lift a coffee mug with one hand. He said the elbow pain is tendonitis, like tennis elbow, probably referred from the thumbs/wrists. ???? I thought enteropathic arthritis attacks particularly where... [ more ]
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J-Pouch ForumsGeneral Discussion
Before you leave the hospital, definitely eat before you go to see how things go, if it goes wrong at least your there for someone to help. [ more ]
Unless it gets bad enough to need surgery then your tools are fairly primitive: walking, fluids, and patience. [ more ]
Same here Scott - haven't had to hospitalize for anything in quite a while. The only reason I came in this time was at the behest of my GI. I guess not a bad thing, found and treating those ulercations is a good thing. As far as my other issue, hopefully it'll resolve sooner rather than later. The dr basically told me as soon as I have a BM, I can leave. I won't leave before that just incase something still isn't right. If there is a kink/twist or otherwise, not sure there's anything that... [ more ]
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J-Pouch ForumsGeneral Discussion
I am glad you are doing better and had the surgery! I hope things get better for you! Keep us updated [ more ]
Yeah I need to start getting active again with stretching and or yoga. I was going to physical therapy for the past 5 months due to lower back pain. Xray showed L4-L5 degeneration. PT helped a little bit but pain doc said he may want to do an MRI so we will see. the pains don't matter on what I eat. its just weird I am having pain under left ribs cage when the surgery was basically center to right.. [ more ]
Glad to hear you are recovering well from the surgery, but sorry to hear it didn't help. Maybe it is worth a try to begin a gentle stretching program for several months to see if that helps. Do you have less pain when you are fasting or on a liquid diet? Not saying to starve yourself, just to determine if the pain is coming from intestinal adhesions. When you fasted for the last surgery, did your pain change? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I definitely will! I’m so sorry you are suffering. I hope you can figure something out. Fortunately, I don’t have any pain or urgency. My body just will not allow stool to easily empty. I have to push and lean forward, stand up, sit back down, push more...it goes on forever. Every time I push, I feel my bladder prolapse push down. I’m scared of making that worse and eventually needing surgery on that! [ more ]
I just looked this up: Triptans . These are prescription drugs such as sumatriptan ( Imitrex , Tosymra) and rizatriptan ( Maxalt ) are prescription drugs used for migraine because they block pain pathways in the brain. Taken as pills, shots or nasal sprays, they can relieve many symptoms of migraine [ more ]
Yeah, I would bring that up to Gastro and see what he says, definitely do not be afraid of second opinions if you need them. And of course! Anytime you need me, I am there! You will get through this, I have faith in you I take Naproxen for migranes but its not recommended for J-pouchers, that is the only thing that works for me, I have to look for other things as well. Maybe reducing stress might help, I know high doses of Prednisone helped my migranes but I get depressed on that. [ more ]
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J-Pouch ForumsGeneral Discussion
Lots of things! : Slow down output, lower cholosterol, good for bile, helps you absorb more nutrients, etc- the list goes on Make sure you have good dental hygiene, it can ruin your teeth/gums lol [ more ]
I took it off and on when I had some serious soreness that just would not heal because the acidic stool was literally tearing me apart. It was hard to time the dose because it interferes with absorption of other meds. I did figure out a sensible 2 times a day schedule and it calmed the acids enough to allow me to heal. It also thickened my stool - but not too much. [ more ]
Thanks Guys for taking the time to review Cholestyramine. I read in some journal that it is ineffective for those that don’t have a colon, but my surgeon’s team recommended it for heavy output. I am 5 weeks with the loop ileostomy on my way to a JPouch and I am suffering 3,000ml of output - very rough. Thanks Doug [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for answering my question [ more ]
Why would it need to be removed? They now fix pouches very well...things can be done and you should not have to settle...fight, if you can, for your freedom. Sharon ps. we do not need our bandages, stomacovers or any other protection to be waterproof...we just need it to protect our clothing from the moisture that our stomas give off. [ more ]
Thank you for your bravery, Sharon. I just have a lot of pouch issues and have been told by at least one surgeon it will need to be removed eventually. Swimming is one of my sanity breaks and I would hate to lose it. The bag is not my first choice. Hopefully, I will never have to make the decision. [ more ]
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J-Pouch ForumsFAP Forum
https://www.j-pouch.org/topic/...2#642383336278969852 FRH: Thank you for your food advice, sometimes I wonder if I can have anything to eat that will not cause symptoms. I going to try your suggestions. [ more ]
Oh thanks for your responce! Im gonna try and book an appointment to speak to my surgeon, though corona isnt allowing face to face appointments. Idk why my pouch is doing this, ive had my jpouch for 6 years, and im currently living with my loop ileostomy (had it for a year and im not having it reversed due to desmoid tunours causing bowel obstructions). Im eating "beige" food (white carbs) and wouldn't think diet would affect mucous prodiction and the irritation im having? I have had no... [ more ]
I certainly wouldn’t just go by what this nurse said. Make appointment with surgeons office or GI specialist and be persistent in asking to speak with them and don’t be dismissed. I also do irrigation a few times a day just to help with any irritation of incomplete emptying. Konsyl brand fiber is the absolute best. Calmoseptine ointment for skin (burn itch) is about the only one that has both calming and healing ingredients) and is thick enough to protect. Food tips. Pasta, rice, potato,... [ more ]
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J-Pouch ForumsGeneral Discussion
Sounds like a blockage to me, I do not have much experience with Pouchitis. I would say try Pantoprozole or Omeprozole, Magnesium supplements work too, just a few other options. *If you keep vomitting, go to the EMERGENCY ROOM* [ more ]
Katie, I don’t think your vomiting is due to pouchitis. There are nearly 22 feet of intestine between your stomach and your J-pouch. You could be having a medication reaction, or perhaps some upper GI problem (e.g. gastric outlet obstruction or other kinds of indigestion). I can’t tell exactly how long this has been going on, so I can’t tell if something like food poisoning or infectious gastroenteritis is a possibility. I’ve never heard of using cefdinir for pouchitis, nor have I heard of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank goodness you get to skip magnesium citrate! I wish I could lol. And OOOO I wish they would give me cookies and juice lol [ more ]
I had my annual pouchoscopy last week. My surgeon doesn't instruct me to do any prep except to skip breakfast on the day of the scope. But still, two days before my appointment I'll eat light meals. Soups, tuna salad, egg salad. No leafy vegetables. No beets or raspberries -- produces red residue which can be alarming. I always ask for sedation. Sometimes I wake up in the middle of the procedure. I don't feel anything, and can watch the screen. The procedure takes an hour or so from sedation... [ more ]
I 100% agree!!!! A long time ago I saw "grape flavor", I do not see it anymore but that would be a bad idea too to drink before a pouchoscopy, purple looks similar to red. [ more ]
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J-Pouch ForumsPouchitis
Are you worried about germs getting in the dishwasher from your catheter??? [ more ]
Wow, I am glad everything works out with the Catheter. I wonder why your J-pouch never fully emptied? That is interesting! How often do you irrigate/empty the pouch with the catheter??? [ more ]
I haven't looked at the responses yet but I was given the best advice by my stoma nurse years ago. I "irrigate" in the shower. Prior to this I had been told to irrigate while on the toilet. It was so challenging and very time consuming. I use a rigid "hard plastic" type catheter as it helps me keep dilated. I posted a few weeks back with pictures of the catheter I use. To clean it, I will soak it and a mixture of bleach and water overnight. (I make sure rinse it very well before using). My... [ more ]
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J-Pouch ForumsGeneral Discussion
You are welcome I was 22 right where you are now and now I am 28; you will be me in 6 more years [ more ]
Thanks Lauren and Aimee! it's good to hear from some people who went through the same thing. I'm glad to know that it got better over time! I will keep being patient and trying the immodium and Metamucil! [ more ]
Oh, I forgot I do take a lopermide or a lomotil before bed. I used to take one of each and take another lopermide at about 2:30 am. I only take one now. Your pouch has to figure out that it is now a colon. Good luck. Aimee [ more ]
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J-Pouch ForumsPouchitis
WHOAAA! I never heard of anyone having a J-pouch that long and not having pouchitis!!! Do you do anything special??? I am assuming you do not smoke. drink too??? [ more ]
I’ve had my j pouch for 31 years, never had pouchitis knock on wood. Just one blockage two years ago. [ more ]
Yes! I have it and have had it since my take down in 2017. It’s miserable! [ more ]
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J-Pouch ForumsGeneral Discussion
Hattie, I have an anal stricture. My colorectal surgeon did my dilation. I don't have problems with leakage though I have heard it can happen. I have to do self dilation from time to time to keep the stricture opened. I guess my advice for you would be to make sure that you have an experienced professional do the dilation. I definitely prefer my colorectal surgeon that did my surgery. My G.I. tried to do the dilation first, and that just didn't work out. Good luck. Let us know how everything... [ more ]
I do not have any experiences with strictures of the J-pouch, but I would highly recommend talking to your gastro about those important questions. When you are talking about leakage, are you talking about leakage in the J-pouch sites like the anastomosis site or leakage out of the anus??? If you are talking about leakage out of the anus then that this not something I would be as worried about as having strictures. Strictures can be pretty serious, leakage out of the anus can be worrisome but... [ more ]
I have been strictured at the J Pouch inlet for 10 or more years. It's very common to be strictured in that area due to inflammation from backsplash stool. My GI doc said as long as he can get a scope through the inlet, there is no need for dilation. He will only dilate me if he can't get the scope through. He told me dilation is risky because there is possible stretching, tearing and bleeding and he doesn't want to do it unless he has to do it. It's way more dangerous to do in the anal... [ more ]
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J-Pouch ForumsK-Pouch Korner
Oh wow!! Sorry to hear about that! I am glad you are better now though. You still had your rectum when you had the J-pouch??? [ more ]
The first one prolapsed after several years and the second actually was good , but when the rectum and anus were removed due to stenosis, Other complications set in. The K pouch was formed 10 months later, the Kpouch Drs tell me the pouch is in good shape, It’s my system That does not digest food well, so have to be on extremely low fiber. Lots of difficulty with emptying. It’s complicated. [ more ]
What made your two J-pouches fail??? [ more ]
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J-Pouch ForumsPouchitis
Hydrocostisone is known to reduce inflammation, I think you should be fine ask a doctor first though. Hope you feel better [ more ]
I think you are talking about Cortenema: https://www.rxlist.com/cortenema-drug.htm It's been around since at least the 1970s, and I was using it in the 1970s as a kid to treat UC. They were somewhat effective early on, not so much later. Cortenema is typically prescribed for UC patients and I have never heard of Cortenema being prescribed for pouchitis. In my pouch years I was prescribed Budesonide foam enemas and Rowasa enemas. The issue was that I couldn't hold the enemas in long enough... [ more ]
Are you talking about Uceris, the budesonide foam enema? I live on the West Coast and am getting it. I know the hydrocortisone foam enema has been unavailable for years. I used hydrocortisone suppositories for a while. They helped, but eventually quit working. There also used to be a liquid hydrocortisone enema which I could never keep in long enough for it to do any good. Good luck. This is a tough disease. [ more ]
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J-Pouch ForumsGeneral Discussion
If a doc is okay with leaving a hernia there, I would suggest getting a new doctor lol. [ more ]
According to my gi doc., some hernias can develop gangrene. As long as your doc knows it's there and is ok with it, I would be ok with leaving it alone. [ more ]
The belts are just a band-aid, its not a fix all solution. Everything is your choice, I hope you do the right thing to take care of yourself. [ more ]
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J-Pouch ForumsHelp! Need advice now!
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Thanks Mark - great to meet another Remzi patient - he really seems to be an amazing person. I am trying to keep positive and I realize things will get better after takedown. I don’t need be in the office for a few months due to Covid, so I have some time to get healthy. So glad this worked out for you. Thanks [ more ]
Elif, i had my 2nd surgery in march, a day after my surgery covid started, they stoped all surgeries, i believe i was his last surgery before covid, the hospital wanted to discharge me asap cause of covid. [ more ]
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J-Pouch ForumsGeneral Discussion
Just double checked - I forgot this was in my online files. Atropine is an issue with narrow angle glaucoma. It is not an issue with open angle. This info. is more for people who have glaucoma - not for people wondering about causes. If relatives have glaucoma, you have a higher chance of getting it. [ more ]
I asked my eye doc about the Lomotil. He said there are two types of glaucoma - sorry, I do not remember the names. With one type, you can take Lomotil. With the other, no. Talk to your eye doc. [ more ]
The Lomotil might actually be causing you trouble at that dose. The atropine in Lomotil is present in a small amount to discourage abuse, but (usually at higher doses) it also can cause serious problems with glaucoma. I wonder if 8 tablets a day may be over the edge for your particular circumstances. You could 1) ask your doctor, 2) try substituting Imodium (loperamide) at least temporarily, or 3) just cut back on the Lomotil. No one with serious glaucoma should take atropine unless... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Find a good stoma nurse. It saved me. [ more ]
You are welcome! I hope the problem gets solved! Let us know how it goes [ more ]
This is what I found and used...my wound care nurse never told me of this product and said they prefer to find the best appliance to stop leaks from happening. I suffered for 2 months and this stuff worked great. [ more ]
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J-Pouch ForumsGeneral Discussion
I have been experiencing pain in my sacral area for almost a year. It feels like my tail bone is broken and it really hurt when getting up from a seated position. I did not know that a person could get arthritis in the sacral joints and the pain can be relieved with certain types of stretching exercises. Unfortunately it turn out to be an abscess which burst causing peritonitis and sepsis. Blood work showed an elevated white blood cell count of 21k. I would monitor that closely. Hope this helps [ more ]
Even if it doesn't show it could still be an abscess brewing...Does heat help? Could it be something that a chiro could try to adjust? Not making light of it but all of the surgeries, illness etc sometimes we neglect to consider the simple stuff, like maybe we could use an adjustment? I slipped and fell 4yrs ago doing a flying splits (not as poetic as it sounds) and landed hard. Nothing broke so I got ignored but my sacral pain just kept getting worse til I could barely walk. X-rays showed... [ more ]
I had my redo 5 years ago, and I have this very sore area about a fingertip inside my anus for the past few years. We did an MRI 2 years ago to rule out abcess and fistula and it ruled them out. Scope did not show any issues either. It will come and go weeks at a time but when bad it really hurts. Odd thing is when I get the pain in my anus I get a burning sharp pain in front of my shin and on top of my foot and nothing in between.. Pain management doc says it definitely nerve related. He... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I always like to make a list for everything too. Its very helpful!!! [ more ]
Hi Kid, I re-read your posts - and I feel your frustration having to rely on surgeons and doctors to help fix this problem. I have probably spent years researching medicines and different surgical scenarios- it is exhausting and scary - and the right answers are not clear. For me the thinking about what to do is almost as bad as the disease in some ways. This may sound crazy, but when I personally get overwhelmed with the myriad of paths to take - I write them down as a game plan- not in my... [ more ]
I totally understand everything you said! If you feel that is right for you, I support it!! How old were you when you got your first stoma at the lower sight??? [ more ]
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J-Pouch ForumsGeneral Discussion
Yeah, I understand, I just wish you would have went to a movie or something but you seem happy so that is all that matters [ more ]
hi lauren, just a regular day was had the 15th - 19 year anniversary., as mentione din a previous response to you. I do not eat junk. I recovered from an aki (acute renal injury) for which a hospitalization occured and was placed in icu, this was last year july 1 thru 6th 2019. I had a past history of chronic kidney disease which no one knew was acute and not permananant. Things went on for a bit and it ende dup turning to failure for which 3 emergency bedside hospital setting dialysis... [ more ]
How was your celebration??? [ more ]
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J-Pouch ForumsGeneral Discussion
Are you having nightmares??? [ more ]
I used to get them about 3x a week during periods of months for a few years after my j pouch surgery. I always assumed it was due to stress (I was going to college and working and am bipolar). I'm getting them again and feel like theyre my weakened gi tract's way of saying I'm tired of stressing. [ more ]
I had nightsweats prior to being diagnosed with sleep apnea, but not to the extent you are indicating. Once treated with CPAP, they went away. Given the extent to which you indicate you are sweating, I'm with the others; make an appointment and see your doctor. Mark [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Something that works for me....and I get bad heartburn..... is I eat some cantaloupe every 3 days or so. I’m not sure what it is but it works for me...not sure if this helps you.. might be worth a try... [ more ]
I think I just tried Tums and Rolaids. I think that’s all I needed but yea, it’s no fun at all. I’m sure you’ve heard all the jazz about make sure you’re sitting up and not eating when laying down on the couch (ie: watching tv after dinner, etc). Hang in there! Just a few weeks to go! [ more ]
You should stay away from regular ice cream with emulsifiers. My GI told me to stay away from emulsifiers, and mentioned “ice cream” in particular as ice creams are loaded with emulsifiers. He told me emulsifiers strip off the protective lining of the digestive tract. There are “natural” ice creams that do not have them, you need to read the ingredient list to make sure. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I would strongly recommend you push to go to the office and have the doctor physically see it if possible. Its way better to see stuff in person rather than video/phone chat [ more ]
It does feel like the 1st prolapse. I have a phone appointment next week. [ more ]
It hard to know - but I hope you have a hemorrhoid also - I think you need to get it evaluated fast - before it causes a bigger problem. Does it feel like the first prolapse? [ more ]
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J-Pouch ForumsGeneral Discussion
Oh good, I see you are pretty experienced at being very adamant, a lot of people need more of that nowadays. I am glad you are well taken care of! And you are entirely welcome! [ more ]
Yes good luck too! [ more ]
Thank you Lorna. I hope everything goes well with the new surgeon. If you would like to share further, I would certainly be interested in your final diagnosis(es) and proposed treatment protocol. I wish you all the best with your out of the ordinary issues. I guess we all have unique happenings. I now have a pelvic ultrasound booked to evaluate possible prolapse of the uterus which could be affecting the J pouch. Your situation does sound similar, as I mentioned. All the best Lorna. [ more ]
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J-Pouch ForumsGeneral Discussion
Of course! I think you should book an appointment ASAP, you do not deserve to suffer. [ more ]
Getting answers is always such an undertaking. Np appt yet. Just waiting. Thanks for checking in. [ more ]
I am so sorry to hear that, hopefully we can get some answers soon! When is your GI appointment??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
What I would do personally is get my J-pouch removed completely and get a permanent ileostomy ASAP. After everything we have been through, i would be done with experimenting lol. Permanent ileostomy and call it a day lol. [ more ]
I had a J pouch for 30 years that had to be removed due to recurrent high grade dysplasia and a malignant polyp near the anal sphincter. I would suspect with what you posted about the condition of your pouch that it would be best to have it removed to prevent problems later on. Your surgeon should be able to advise you about that. Have you inquired about having a new J pouch constructed? In my case, the option of going to an end ileostomy was suggested in a second opinion consultation, but I... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Totally agree! Might be a challenge though since the J-pouch is not too well known by a lot of doctors, but definitely possible!! [ more ]
I don’t remember having any changes in my bowel movements but everyone is different. Have you talked to your doc at all? they might have some insight. Does your OB have experience with handing patients with j pouches? I would def try and get a doc who has a good understanding of the challenges of having a j pouch while pregnant. [ more ]
I have never been pregnant but I have heard about your situation being normal. Some people on here that have their periods tend to go more to the restroom too when on it. Congratulations [ more ]
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J-Pouch ForumsHelp! Need advice now!
I would rather you get the biopsy ASAP but I am glad you are looking further into this instead of just dropping it like other people said to. Thank-you for looking further into it And okay let us know, I hope all is well! [ more ]
Hello All: This is Nick who began this discussion about enlarged prostate and a high (9.3) PSA test. A urologist from Johns Hopkins Hospital told me before anything else happens I should get a 4K blood test which determines whether or not to have a biopsy of one's prostate. I will let you all know what happens. Thanks to all for your comments and recommendations. [ more ]
Yeah, the J-pouch definitely affects a lot of things, I am not too surprised about that at all. [ more ]
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J-Pouch ForumsGeneral Discussion
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I will definitely say yes in the long run. Having cheat days will not hurt at all. The reason why eating crap can hurt the pouch in the long run is because we need great gut microbiome to keep our pouch healthy. Eating crap food all of the time with no nutrition will not keep up the gut microbiome, which will cause constipation, pouchitis, even ulcers, and deterioration among other things. My diet is vegetarian, vegetarians naturally have probiotics and prebiotics in there so I am pretty... [ more ]
I never knew anyone in the UK ate pancakes. Are they made with a buttermilk batter like the American version? I figured the typical English breakfast is English muffins, tea, blood pudding, and baked beans with a fried tomato. I do not even see any blood pudding or tea in your diet - are you a culinary rebel? LOL. When I went to the famous English pub Burgundy Lion in Montreal QC, they were serving a very, very thick slab English style bacon, not at all like American style bacon. The English... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I’m sorry you are not feeling well. I’ve been experiencing severe gurgling/ gas, bloating & abdominal pain & tenesmus (feeling like I have to go but nothing happens) the last 5 days myself. I came in the site to read others thoughts & suggestions too. Today I put myself on a liquid diet, lots of fluids- broth, water, green tea (hoping to reduce inflammation) small cup black coffee, it seems to have helped quiet the insides for me so far, no pain tonight, only slight bloat. I need... [ more ]
I am sorry to hear about this! I would definitely recommend the ER if its get worse. In the mean time, maybe probiotic yogurts and definitely stay hydrated. [ more ]
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J-Pouch ForumsGeneral Discussion
Of course a mean person would not think their wrong. You called my statements nonsense, gilb, fanciful, and you have been mean. Disagreeing is totally fine, a lot of people on here have disagreed with me respectfully without insulting my advice- that is fine, but you have been disrespectful. If you would have asked politely for the sources, I would have been more than happy to have given them to you. I never threatened anyone, I was giving advice to help people. If you read my statements,... [ more ]
Stool holding is a genuine issue when, for example, children (with colons) avoid defecation for days and days. In that context it can lead to encopresis. It has no connection to J-pouchers who empty their pouches multiple times per day. Someone who is physically unable to empty their pouch can also have serious problems, but that’s also not the matter being discussed. Threatening people with dreadful health consequences based on fanciful notions is bullying. Strongly disagreeing with such... [ more ]
You have disrespected me on numerous occasions, that is the reason I have not been talking to you. There is a way to say everything respectfully and you have been a big bully. I am not going to talk to you until you apologize for your rude behavior. *I have found many reliable sources supported by doctors and factual evidence.* Everything I post has been researched fully and fully supported. I do not post stuff out of thin air. I just refuse to talk to bullies who do not apologize for being ... [ more ]
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J-Pouch ForumsHelp! Need advice now!
They do that bull crap all of the time, they are just stupid lol. When I was having asthma problems they kept trying to send me to a pcp instead of a lung doctor. The medical system is stupid lol. And anytime, hope everything works out [ more ]
I thought so. I don’t understand why they are sending me to my PCP. Thank you [ more ]
Gastros handle the liver too. Either that or hepatologist . A lot of people see gastros for just for liver problems [ more ]
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J-Pouch ForumsHelp! Need advice now!
I totally understand! I am just glad you are doing better overall. It must be hard to have to keep the catheter clean all of the time, I am sure you do an amazing job at it though! [ more ]
Lauren, I would have preferred to keep my J pouch if the high risk of cancer and leakage problems from a weak anal sphincter had not been present. Getting the BCIR eliminated the risk of cancer and the leakage problems and significantly improved my quality of life. I would never have been happy with and end ileostomy. [ more ]
I would definitely get a second opinion before making a decision!!!! I have a lot of confidence in the Mayo Clinic. One in Rochester MN is where I had my first surgery and they saved my life. There were others there that were getting repaired from bad surgery other places. I have also been to Jacksonville, Mayo Clinic. Though I have not been to the others mentioned I have heard good things about them. Thoughts and prayers for you as you make this decision. [ more ]
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J-Pouch ForumsGeneral Discussion
Let me know how it goes! I want to hear everything! Good luck too hon! [ more ]
Absolutely [ more ]
Oh wow, that is a cool story! I am glad everything worked out! I bet you are excited for Takedown In Jan!! That will be a good way to start the New Year! [ more ]
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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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