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J-Pouch ForumsGeneral Discussion
How much is your daily Fluid intake?
Former Member I drink about 2-3 gallons with salt added. [ more ]
Raj 10-12 glasses a day . But that depends on your lifestyle and environment . I just see to it that pee looks light yellow , never dark and doesn't burn in any way when peeing. Those are some signs that your fluid intake may not be sufficient. [ more ]
PouchLogic Water is definitely important, I drink easily 7 to 10 glasses a day, not including other liquid. If you are having trouble getting enough water in try having some salt lol, both are important. [ more ]
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J-Pouch ForumsGeneral Discussion
How to deal with gas pain
Former Member I would suggest reaching out to your gastro. A gastro should be able to help [ more ]
Andreita Yes I tried them but once the gas is there it won't vanish when I take gas-x. It only helps get the bubbles together. So you can pass it. But I can't pass sitting on the toilet. Only when laying on my belly. [ more ]
ytcrockpot Hi, Have you tried using gas pills? That seems to ease gas pains for me. I use Phazyme maximum strength 250 mg. 2-3 tablets. Any other brand you have to take multiple to get same relief. Hopefully that will help. [ more ]
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J-Pouch ForumsGeneral Discussion
Are you guys nervous of who will win the election in regards to healthcare???
Former Member Appreciate all of the positive comments. Biden won so lets hope he helps everybody and those of us with medical issues. I hope everyone: all of the future J-pouchers/pouchies and future ostomates will be taken care of in the now and present going forward [ more ]
Michael while I do, my 34 year old pouch doesn't care much about politics. suggest we keep them separate. [ more ]
Pouchomarx I don't have Obamacare as I have health insurance thru my job. But it is ridiculous, premiums are sky high and deductibles are outrageous. With all of our health issues I have to pay between $3000-$7000 out of pocket for myself and my 2 kids. That doesn't even include the $600 a month in premiums.. I work to pay my medical bills with not much left over.. [ more ]
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J-Pouch ForumsGeneral Discussion
Scar compression treatment
Former Member Oh I totally understand that! I just like to say that a lot lol. I had the same thing happened to me too so I did a lot of woundcare. I would definitely suggest you see a woundcare specialist, that is their specialty . Sorry I did not mention woundcare specialist yesterday lol. There should be woundcare clinics around you hopefully. I would search google [ more ]
LoveLife Thank you for comment, Lauren. My wounds did not heal good, I would like to see, if I can make them better. That has nothing to do with how I view what has happened or the battle I have gone through. [ more ]
Former Member I do not do anything about my scars personally. My scars are apart of my journey and my proof on how I do not let anything beat me. My scars are my battle scars I think you should be proud of them [ more ]
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J-Pouch ForumsGeneral Discussion
Swimming after takedown
Former Member I think you should! There is lots of benefits! It is high in prebiotics and probiotics so that reduces pouchitis risk I have been one for 5 years and never had it. And animals are saved and it helps save the environment Lots of benefits to it for you and the world and lives [ more ]
Jaydog No I'm not but I've thought about trying it [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Do you have to clean your toilet a lot since you go to the bathroom so many times?
Former Member *Fart at your own risk* LMAO!!!!!! So true!!! I agree 100% with everything you said lol. [ more ]
King Krapper Yea I’d like to say fart at your own risk lol, I have found for me at least that I can lay on my side or my stomach and can pass gas with the best of them with not having to worry about Sharting myself lol. Now I don’t trust a standing fart though lol, it’s usually a cross your fingers that it’s dry type of event lol [ more ]
afbucher Farts of any kind are risky for us at best 😂😂 never trust a fart 🤪 [ more ]
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J-Pouch ForumsGeneral Discussion
metamucil
Ryan138 Scott thanks for the tip...I’ll pick me up a shaker this week and give it a go [ more ]
Ryan138 MR D.... you take 3 tsp in the morning and you have close to normal BM all day and take no more until next morning? [ more ]
Mr. D I’ve been taking 3 heaping tea spoons of Metamucil everyday for 18 years, first thing in the morning mixed in large glass of water. I buy only the large 55 oz containers, orange flavor. For whatever reason the smaller containers I find have different granules that are harder to digest. I wait at least 2 hours, minimum before eating. This has been a difference maker for me. Makes your bowel movements as close to normal as possible. [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody have special bathroom access for their J-pouch/ileostomy???
Former Member ❤️
Former Member You are soo lucky!!! They should have that in all 50 states and in the Universe!!! Hopefully some day !! [ more ]
sombrenote Univeristy of Michigan has a card they hand out for special access. It says on it "Providing immediate access to a toilet for this person is required of all businesses in Michigan by state law, per HB 5046, December 31, 2008" https://www.legislature.mi.gov/ (S(clre21q2ujqlpklajcc51ylm))/mileg.aspx?page=getObject&objectname=2007-HB-5046 [ more ]
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J-Pouch ForumsGeneral Discussion
Overeating definitely gives me problems, same for you???
Former Member I definitely know how they feel, it feels like HELL with an ileostomy. And thank-you for bringing this up! Overeating can cause: hernias, bockages, and other problems for sure. I only overeat maybe once a week just to have some fun lol. But I should be careful on that once a week too. I definitely do not need any problems. [ more ]
Former Member It must be nice not being in the 9%, you must get more sleep [ more ]
afbucher Be careful I have been in the hospital more times than I can count for intestinal obstructions...! It is comparable if not more painful that giving birth...! [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody have a handicap sign for their car strictly for their J-pouch/ileostomy???
Former Member HEY! And wow that is awesome! I wish more J-pouchers/ostomates can get stuff like that too! You would think the doctors would give every J-poucher and Ostomate that. I wish we all had restroom access in every state too. [ more ]
tf Hi, I was given a handicap placard by my family dr. She was able to because I could not walk the distance and the urgency to need a bathroom. I was so glad for that. The anxiety when on the road or getting to the store and needing to get to the restroom asap. Takedown 2013, dx severe UC. I have J-pouch since 2013 [ more ]
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J-Pouch ForumsGeneral Discussion
Migration of surgical staples or clips
Former Member So happy to hear that I think you are doing the right thing. Remember to take it easy, especially when you exercise- do gentle stuff. Your welcome [ more ]
skn69 The pain has lessened, thankfully and is only present when I sit in certain positions. I am making an appointment to see a surgeon just in case but if the pain completly6 disappears then I won't touch it. The last thing that I need is unnecessary surgery. Thanks for asking. [ more ]
Former Member Are you doing better??? [ more ]
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J-Pouch ForumsGeneral Discussion
New Crohns diagnosis after 3yrs of antibiotics for pouchitis
DeniseLise Has anyone stayed on Stellera for more than a year? These posts are old now, so I'm not sure if any of you will be following. I have the same issue. After 20 years of pouchitis off and on I have now been diagnosed with Crohn's. Have a stricture 30 cm up from the pouch, inflammation and ulcers all over, but the diagnosis came from biopsy also. My symptoms are only frequency, no pain, I feel really good, so I was surprised at the scope results. Im to start Stellera on Friday, basically to... [ more ]
ks1905 I'm sorry that I did not see this sooner. I started Stelara 2 years ago (25 months) and at first it only worked for a few weeks at a time and then I'd have to go back to antibiotics (2.5 years of rotating antibiotics). My insurance company would only approve the psoriasis dosage(45 mgs every 90 days) for Stelara because it wasn't FDA approved at the time for CDs. I have ulcers in my pouch, call it what ever you want. So thanks to Prednisone I needed a hip replacement and I had to discontinue... [ more ]
SarahXYZ Well, Stelara won't change the fact that you don't have a colon fo digest the leafy greens! I do ok with romaine and if it's part of a meal with bulking foods like rice. [ more ]
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J-Pouch ForumsGeneral Discussion
What is our disability called?
Former Member A lot of good responses! I agree that we will always have UC and IBD. What we have is not a cure for Autoimmune Disease and IBD. Our J-pouch/ileostomy are our treatment plan. Our condition is called what our disease is called, in my case UC. I like to use the word special or difference over disability/disorder. [ more ]
ytcrockpot I thought I was the only one that asked this question. My psychiatrist asked me yesterday to find out from my gastro doc what the medical term for my disability is. Apparently it's a hard question to answer. no one understands, 35yrs post total colectomy, chronic diarrhea, pouchitis, no meds working and everything else that's associated with it. [ more ]
Rebe0505 kobe i think you might say i have chronic intestinal issues..thats what i say when it has me down and out or someone wants to know why i am such a food police eating.. and if someone goes any further i just say i am missing my large intestines..that usually stops all questions! i did not have my colitus or my pouch during my working years so i guess if it effects your ability to perform your job it does become an issue you have to deal with. but i still would not consider it a disability.. [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have RA?
Former Member Thanks for the suggestions. Will try zucchini, might be the ticket to help move things along. It’s something I’ve eaten plenty of for it’s easy digesting. And then the olive oil with it sounds hopeful. Never had constipation before taking this RA med... [ more ]
Fredrik I had UC, got a j-pouch. A couple of years later I was diagnosed with spondylitis. It means inflammation in the SI-joints. Luckily there are many good treatment options, mainly biopharmaceuticals, that treat both pouchitis and these kinds of diseases at the same time. [ more ]
Winterberry Thomasheubeck, if oatmeal doesn't work, have you tried eating cooked zucchini? I ate that all the time when I had issues. Peel the zucchini (you don't want to eat the skin, which is insoluble and will cause problems). Slice into coin shapes 1/2 inch thick or so, and drizzle olive oil or any kind of good oil. Salt and pepper to taste. Put on a small roasting tray and roast at 325F for 15 minutes or, depending on your oven, until they start to soften and turn slightly brown. Keep your eye on... [ more ]
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J-Pouch ForumsGeneral Discussion
Recommendation needed for specialist in Pittsburgh Area
Former Member Remicade has more success rates with all the symptoms you have, maybe you should mention that to your doctor if you would like. [ more ]
Fight like a girl On entyvio every 4 weeks..started a yr ago [ more ]
Former Member I am glad you celebrate I celebrate my pouch birthday and takedown too You were the first J-pouch patient for that doctor and he did not tell you????!!!! That doctor is crazyy! He needs to get sued lol. For the infections, ulcers, and crohns- I would suggest REMICADE to your doctor, I think that would cure everything up [ more ]
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J-Pouch ForumsGeneral Discussion
Knowledgeable J Pouch Doctors/Surgeons in Bay Area?
Nara Dr.Samuel Oommen, John Muir, walnut creek. I had j pouch in 2017 due to dysplasia after suffering from UC for 15 years. [ more ]
Former Member I would recommend looking up gastros in your area and calling the offices and ask for the managers there and tell them your story and ask if they are experienced with J-pouches. I did that and everything worked out. [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch help please
Former Member Oatmeal helps too [ more ]
Former Member Hi Scott, I drink plenty of water but will definitely try Metamucil, hopefully will do the trick. Thank you. [ more ]
Scott F Hi, Tom. I’m sorry you’re going through this. If all you’ve tried is MiraLAX then there are more things that might help. Adding plenty of water to your current consumption might be enough to do the trick. If that’s not enough, or you’ve already tried it, you might also consider trying (carefully) a psyllium fiber supplement - you could use Konsyl, which is readily available unsweetened/unflavored, or (if you prefer) artificially sweetened Metamucil. These tend to bulk up liquid stool, which... [ more ]
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J-Pouch ForumsGeneral Discussion
How old were you all when you got your J-pouch?
Former Member AMAZING!!!! Glad your better [ more ]
skn69 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 ]
Danr11 ❤️
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J-Pouch ForumsGeneral Discussion
achy thighs
Former Member Just had potato chips today [ more ]
Former Member No problem, anytime [ more ]
JPouch_2016 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 ForumsGeneral Discussion
Covid19
Former Member 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 ]
meghspd Really ? I never knew that !! You learn something new everyday ! 😊 [ more ]
meghspd 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
Cough related to crohns/pouch
GraceB 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 ]
Former Member 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 ]
Scott F 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 ForumsGeneral Discussion
Output consistency
Former Member 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 ]
CTBarrister 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 ]
Scott F 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
Crohn's-related arthritis
Former Member 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 ]
Scott F 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 ]
GinLyn 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
Admitted for obstruction
Former Member 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 ]
Scott F Unless it gets bad enough to need surgery then your tools are fairly primitive: walking, fluids, and patience. [ more ]
KennyJG44 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
gallbladder out next monday, I need food suggestions for after...
Former Member I am glad you are doing better and had the surgery! I hope things get better for you! Keep us updated [ more ]
Pouchomarx 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 ]
girlunky 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 ForumsGeneral Discussion
Cholestyramine
Former Member 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 ]
kta 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 ]
Doug K 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
Can you swim with a K-Pouch?
Former Member Thanks for answering my question [ more ]
skn69 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 ]
kta 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 ForumsGeneral Discussion
Feeling full, acid reflux, followed by vomiting
Former Member 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 ]
Scott F 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 ForumsGeneral Discussion
Nighttime accidents
Former Member 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 ]
gwsmalle 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 ]
Aimc 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 ForumsGeneral Discussion
Stricture
Aimc 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 ]
Former Member 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 ]
CTBarrister 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 ForumsGeneral Discussion
Hernia at Former Stoma site. Concerned about another long Ileus.
Former Member If a doc is okay with leaving a hernia there, I would suggest getting a new doctor lol. [ more ]
kta 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 ]
Former Member 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 ForumsGeneral Discussion
glaucoma
kta 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 ]
kta 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 ]
Scott F 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 ForumsGeneral Discussion
Chronic sacral and butt pain
THE KID 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 ]
skn69 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 ]
Pouchomarx 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 ForumsGeneral Discussion
6 YEAR J-POUCH ANNIVERSARY TODAY
Former Member 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 ]
DoughBoyInPHL78 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 ]
Former Member How was your celebration??? [ more ]
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J-Pouch ForumsGeneral Discussion
night sweats? really bad....
Former Member Are you having nightmares??? [ more ]
skimzuma 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 ]
Minn Mark 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 ForumsGeneral Discussion
Any ideas? Pouchitis, prolapse?
Former Member 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 ]
lorna Yes good luck too! [ more ]
GEB56 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
will eating crap food hurt pouch in long run?
Kushami ❤️
Former Member 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 ]
CTBarrister 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 ForumsGeneral Discussion
Pouch dialation
Former Member 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 ]
Scott F 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 ]
Former Member 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 ForumsGeneral Discussion
Surgery duration
Former Member Let me know how it goes! I want to hear everything! Good luck too hon! [ more ]
Gom Absolutely [ more ]
Former Member 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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J-Pouch ForumsGeneral Discussion
Ever tell anyone at work about your colitis?
Former Member I think you should tell them about the brain fog so they will not be hard on you. [ more ]
asdfqwer Thanks for all the comments! I do agree with not telling about the brain fog. I have a unionized gov job so my performance isn't a huge issue but I still think it wouldn't be helpful to share I am struggling with focus. Maybe I can get myself on a low dose of prescription meds for focus. In regards to sharing about UC in general, I may just casually do that piece by piece when the opportunity arises. Luckily I'm only going to bathroom 1 to 3 times a day at the moment but may get worse... [ more ]
Former Member Did all of the comments make you more comfortable about sharing? [ more ]
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J-Pouch ForumsGeneral Discussion
Question about old stoma site
Former Member My 6th year anniversary is on Tuesday and I still have tenderness there. If it gets pushed on or if I turn the wrong way it hurts. It has gotten better over the 6 years but in the early years of takedown it was much much tender. Everything you are experiencing is totally normal *Still tender after 6 years* [ more ]
Former Member Dang you are pretty tough!!! [ more ]
GEB56 I am on day 14 now of tender, hard, flutter feeling at site of old ostomy. I had symptoms of a partial blockage with distention and loud churning with pain. It hurts/feels weird at that site when I cough or even breathe deeply. CT scan 5 days ago showed no blockage, but soft tissue "collection" (whatever that means) behind the ostomy scar. I do exercise and some sports and wonder about a hernia. Does this sound familiar to anyone? [ more ]
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J-Pouch ForumsGeneral Discussion
chron's and pouch
Former Member Some surgeons would say yes, but I would definitely not reccomend it at all! Crohns attacks the small intestine and other things and the pouches can become greatly affected. I have heard of some people living peaceful with a J-pouch with Crohns but its not worth the risk. If you need/want surgery get a ileostomy. I know it can be depressing to have a bag, I would know; but look at it as a second chance of life, a chance to have your life back. [ more ]
Scott F Many surgeons won’t be willing to do pouch surgery on someone with Crohn’s Disease. I was turned down by two surgeons based on a very uncertain diagnosis in my case. OTOH some surgeons are more adventuresome, and standards vary from country to country as well. I found a well-regarded surgeon willing to operate on me, but in fairness he convinced himself that I had UC rather than Crohn’s. The outcomes are worse for folks with Crohn’s DIsease, and a failed pouch is no picnic, but if the... [ 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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