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J-Pouch ForumsHelp! Need advice now!
Vitamins and POUCHITIS
Chad44Chad44
Winterberry Check the ingredients' label. The capsules -- the actual capsule itself -- could be made from ingredients you may be allergic to. Some vitamins have fillers or things listed under "non medicinal ingredients" and these things might be causing your problems. Some might even contain sugars or fillers. Check the labels on all your vitamins. [ more ]
Linguist Hi CHAD44, Do the supplements you take contain iron? Iron may not cause chronic pouchitis but it gives me a lot of trouble if I take it orally. I experience symtoms similar to pouchitis such as frequent bms, unbearable abdominal pain and cramps that do not resolve with Tylenol and / or Buscopan (an antispasmotic). The symptoms disappear only after the iron completely leaves my digestive system. However, my butt and pouch remain sore and irritated for a couple of days more. [ more ]
Scott F Vitamins don't cause pouchitis. Have you tried antioibiotics yet? [ more ]
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J-Pouch ForumsGeneral Discussion
Hole next to hemorrhoids? ?
S sally85
duck11 I had a similar thing 8 years ago. I had a large swollen lump down there with a little hole that drained. It took forever to get diagnosed because it was dismissed as a hemorrhoid. I started feeling mildly ill all the time but was told it was just "stress" from grad school. Eventually it got REALLY big quite quickly and I could barely walk, and finally it was discovered it was actually a peri-anal abscess. I had the thing for 7 months before this was found. Has it drained and opened in a day... [ more ]
sally85 Thanks Jan that makes sense now that I think about it because there was bleeding on a pad before I saw this hole/cut there but the hemorrhoid is still a hugeand it just doesn't want to leave me alone, really hoping gastrointestinal doc can give me a solution to all this on Tuesday! [ more ]
Jan Dollar Your further description of the location and draining blood makes me think it is where a thrombosed hemorrhoid ruptured and drained. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Plan to work in call center need help
SW Sharon W
Dunninator I too am 9 weeks post take down. I'm not as frequent as you, but am worried about returning to work. I'm a teacher so I don't have the luxury of going when I can, however I was working setting up my classroom today and I hardly needed to go. I think because I was not thinking about it, but focused on another task. Hopefully you will have a similar experience. Good luck with the new job. [ more ]
BillV Sharon, it can take an extended time for your body to adapt to its new plumbing and for things to slow down. I had a j pouch for the 27 years that I was a manager for a large public utility and I often had to visit customers’ homes and businesses to deal with complaints and investigate potential damage claims against the utility. These visits often took several hours and I could not count on a restroom being available.. It often seemed that when I could not use a restroom, I could hold out... [ more ]
Scott F Sharon- What half-wit refused to let you use Lomotil? Were you given an explanation? In any case, over the counter Imodium works very similarly. Don't you get an hourly break? In any case, keep stretching the time between bathroom trips, if you can. You're still early in the process. Good luck! [ more ]
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J-Pouch ForumsOstomy & Skin
Seatbelts
R Rachel88
TE Marie Our cat died a few weeks before my surgery in March. He was only 9 and was the best pet I have ever had. He was a large breed, Maincoon, and weighed 25 lbs. Since I've been home all the time the last 6 years he followed me from room to room and I had to train him not to walk on my stomach. I really miss him and agree with you Lambiepie. He knew when things were worse. When I was a kid we had 2 - 4 dogs and a cat so I am a dog lover too. Richard, I eat blueberries everyday in my protein... [ more ]
Lambiepie No grandkids here yet! My dog Lola sleeps on our bed with us, but at the bottom of the bed. However, the sicker I got with my UC, the closer she slept to me. I used her as a barometer if I was trying to tough things out, to keep going when I should've gotten medical help. She slept right near my head one night. I woke the next morning to get ready for work and almost passed out. She knew I was bad. All those times in bed, in pain, she stayed super close. She was such a comfort to me. [ more ]
Mysticobra Yes. They don't complain too much. Except at feeding time. One knows and the other two start complaining cause I'm not getting up to feed em! I have had dogs all my life. My wife too. Our house would be empty without them. They were there for me through all my stages. No matter how bad I felt the Mini Aussie knew something wasn't right. She is so sensitive. But I always had a hard out to pet her. They help us in a different way that I cannot explain. Richard. P. S. Grandkids are pretty good too! [ more ]
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J-Pouch ForumsHelp! Need advice now!
spinal abcess
M Mr_pomade88
Mr_pomade88 So I got the contrast done and they didn't see any leaks. I went to get a second opinion and they did their own mri on me. Now I'm just waiting for their call for results and their next step. [ more ]
Jan Dollar This is not all that unusual. I had a presacral abscess and it was drained by an interventional radiologist, through the butt cheek, and that was over 20 years ago. The drain was left in place for about a month. No need for neurosurgery. Yours is a little higher, but in the same general area. There are a lot of layers between your pouch and the actual spinal column. I would get a second opinion from a different GI surgeon or interventional radiologist. You are entitled to one with even HMOs. Jan [ more ]
Mr_pomade88 Thanks for the reply billy. I didn't even know those two other procedures existed and I definitely will post updates. [ more ]
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J-Pouch ForumsOstomy & Skin
Fissure
J Jasmine30
hever ❤️
Jan Dollar Seems rather bizarre, but if you have one, you have one. How it developed, I have no clue. Maybe poir circulation? Jan [ more ]
Lambiepie Well, if a fissure is a tear, I suppose you can have one if you still have your anus even if you're not passing stool?? Jan would be better able to respond to your question from a medical point of view.... I do want to ask, though, if you have any swelling. About a year after my perm ileo surgery, Barbie butt included, I experienced swelling along the incision site. It was very painful for one full day until the swelling burst and the pressure and pain were relieved. My surgeon never... [ more ]
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J-Pouch ForumsGeneral Discussion
3 perianal Abcesses in 3 months it's literally becoming a pain in the ass... Why ?
S SonnyJ215
Jan Dollar Unfortunately, sometimes perianal and perirectal abscesses just tend to recur, once they are there. It has something to do with the type of tissue there and proximty to the fecal reservoir. Sometimes it is an indication of Crohn's disease. The key is proper drainage with a wide enough opening to prevent premature healing over before it is completely healed inside. A drain or seton may be necessary. In the meantime, lots of sitz baths. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780182/ Jan [ more ]
SonnyJ215 Thank you Scott I appreciate the congrats on my granddaughter.... I guess your right something needs to be repaired just like Dunninator said as well .... I was fortunate enough just an hour ago I did a sit batz and it burst in its own what a relief! For now at least I'm calling my colorectal surgeon tomorrow I hope to get rescheduled soon and as away so appreciate everyone's advice on here ... Thx [ more ]
Dunninator I had a perianal abscess that I had the surgeon drain. A month later it was back. If it is a fistula, which mine was, ithe abscess will continue coming back until the fistula is repaired. [ more ]
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J-Pouch ForumsPouchitis
Irrigation
J JUSTCANTLOSE
Jan Dollar Exactly! We are all different. Many of us try to slow things down in order to be able to leave the house and live a normal life. Some improperly seek bowel movements similar to that with a colon and rectum. Others are troubled by constipation or poor emptying issues. Stool sitting in the pouch for prolonged periods does promote excessive bacterial growth. That is true. The key is finding that balance. Jan [ more ]
JUSTCANTLOSE I say this strongly due to the FACT of experience of myself.. Before i started irrigating my pouch would become infectected which i believe is called pouchitis antibiotics back and forth.. NUTZZZ... Get the poison out my man is my advice and only my oppinion from MY experience.. Good luck brotha [ more ]
JUSTCANTLOSE I believe ALL with this condition NEEDS to find what works for the that individual... This absalutely works for me... Yes it will adapt eventually...100% i dont believe so..... I have yet to hear�� [ more ]
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J-Pouch ForumsGeneral Discussion
Ulceration in the cuff, and what are the little dots? Picture attached.
dgtracydgtracy
Jan Dollar I have good insurance with a low copay (for now), but the monthly cost before benefit for most biologics in my area (California) is $2000-$6000. I guess this is one of the reasons that there is a large movement to work better prescription price deals for Americans. What is weird is the fact that I have been on Remicade for about 3 months now and have yet to recieve a bill for those infusions. I knew there was no copay for the infusion itself, but I thought I'd be billed for the medication. Jan [ more ]
Linguist Wow! Seeing that you guys have to pay that much money for medicine in the US, I consider myself blessed. My state insurance covers all biologics here, no deductible or co-pay needed. And even if I had to pay the full price for, let's say Humira, a box of two doses (two syringes or pens) would not cost me more than $350. Lucky me [ more ]
Jan Dollar Enbrel is not effective for IBD, that is why it is not approved for it. There are other biologics that are effective for both IBD and arthritis besides Remicade and Humira. There is also Simponi and Cimzia. Cimzia has an assistance program that pays for your deductible and copay up to $11,000 a year which did not require a financial need statement. That was real nice! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
squatty potty
D Dunninator
dgtracy I'll echo everything winterberry has said, i have one but i didnt find it useful really at all. i had the same experience with leaning back though, curious, maybe i will try it more as i never commited to always doing it. [ more ]
Winterberry Hi, Dunninator. When I had my colon I used a small footstool and it helped with elimination. But with my j pouch it does not seem to work. Maybe it is because the j pouch is in a different position to how your colon and rectum used to be, I am not sure. If you look on the Internet for side views on the way a j pouch is positioned inside, it seems that leaning back gently toward the toilet tank, as if you were going to lean back to relax in your favourite armchair, helps straighten out the j... [ more ]
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J-Pouch ForumsGeneral Discussion
Anal Cramping
FM Former Member
Winterberry Hi, WillieS. Don't strain. It could make things worse such as bleeding or fissures or hemorrhoids. Try leaning back gently when you are on the toilet seat, as if you were going to recline in your favourite armchair. For some reason, for me, this seems to straighten out the j pouch and gravity takes its course in a minute or less. Look on the Internet for side views of the j pouch and how it is positioned in the body. It seems that leaning back, or sitting up very straight and tall,... [ more ]
Spooky Hi Willies, Yes, I had the same issues immediately after my takedown. I would get a cramping that started shortly before I needed to have a bowel movement. It would stop almost immediately after I emptied the pouch. According to my surgeon, cramping is relatively normal after takedown - especially if you had a ileostomy for a time in between steps. It should improve. I think the cramping or "spasms" in my case lasted about 2 months, becoming less frequent and severe until they gradually... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Backed up over 5 weeks
G Giselle
Jan Dollar I am not sure whether a defacogram would show pelvic floor dysfunction, but I would think it would. I believe you are understanding motility correctly. The right surgeon would be one who has experience with your complications. That can be a tall order in some places! Jan [ more ]
Giselle Thank you Jan. I have done a Defectating proctogram. the impressions were that there are no fixed or dynamic obstruction, no significant abnormalities, minor barium leakage during baring down. i am having XR small bowel series next week. the idea is to confirm that it's the j-pouch is not contracting in spite that there are no visible reasons. Do I understand correctly that is what is called "motility". Is that the same as pseudo paralytic ? A re-do of the j-pouch would mean 2 major... [ more ]
Jan Dollar Well, if your remaining colon is not functioning properly, then it still will not function with a colostomy. You will likely need to irrigate the colon (like enemas) at least daily, in order to empty it. Plus, you will still need the laxatives and supplements. Maybe it is just your colonic j-pouch that has a structural defect, such as twisting or collapsing when you try to empty. This can happen with an ileal j-pouch too. A functional x-ray exam, called defacogram, can show these defects. If... [ more ]
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J-Pouch ForumsGeneral Discussion
Painful joints, muscles, and weird skin
duck11duck11
Jan Dollar It takes a long time for a number of reasons. One is that general practitioners are not very familiar with it. Even the ortho surgeon and podiatrist I went to did not consider something global like enteropathic arthritis. My primary doc finally referred me to rheumatology when I had months and months of persistent low back/upper buttock pain. Another reason is that usually not much shows up on imaging until there is a lot of damage and labs are often negative. Having a rheumy who does a good... [ more ]
duck11 Thanks all, I guess this isn't as common to IBD as I thought. As a side and to clarify, I'm not on any meds and haven't taken Flagyl or cipro since my colitis days 15 years ago. Are there long term side effects you are referring to from these? Jan, did it take so long for a diagnosis because this form of arthritis isn't so well known? My blood tests always show high inflammation markers but it's always dismissed as being so from UC. [ more ]
Jan Dollar Could be meds you are on. But, I definitely would ask for a referral to a rheumatologist enteropathic arthritis (a form of spondylitis) causes inflammation at the insertion points of tendons and ligaments. What you describe fits. It is frequently diagnosed as something else and the diagnosis delay is often decades. I have been on biologics for over 10 years because of it, and my diagnosis was 10 years post colectomy. By the way, ALL of my labs for arthritis were negative and imaging was not... [ more ]
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J-Pouch ForumsPouchitis
Anyone use Alinia?
clz81clz81
Jan Dollar Sounds like a good plan to me! Jan [ more ]
clz81 FYI...doc isn't concerned at this point since I'm having no symptoms. He said to come back for another blood test in 2 months for a more comprehensive panel. [ more ]
clz81 Thanks Scott....that's pretty much what I read online too. My doc ordered it since I was having tingling in my toes and fingers. Could have been medicine related or totally nothing, but he ordered a full panel of stuff. I'm still waiting to hear back from him. I mentioned the Lupus because my grandma had it and I mentioned Crohn's, because I've had docs going back on forth UC vs. Crohn's for a while. After my adhesion surgery when they got to look at everything inside, the surgeon said there... [ more ]
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J-Pouch ForumsGeneral Discussion
Venting and whining a little
J Jersey_Mike
Jersey_Mike I had my second follow-up CT scan yesterday and saw my doctor. There was "significant" improvement and I can eat again! Two weeks ago today was my last meal. That was rough. I'm taking it easy. I had some scrambled eggs for dinner and then a hot pretzel (the kind that are frozen and you heat them in the microwave or toaster oven) as a snack. I feel so much better already. I'm also off the IV antibiotics and took my probiotics again. The diarrhea has been pretty bad on all the antibiotics... [ more ]
Winterberry When you are ready to eat solid food again, go slowly, like a baby. My surgeon said expand my diet but chew everything carefully to avoid sending things to the j pouch that is hard or rough or partially digested. Do whatever you can to help your j pouch, don't make it work hard, whether it's chewing 20 times, or liquefying food into a soup or smoothie in the beginning. Be careful about blockage on your cruise -- where food will be available 24/7!!! Choose carefully the cruise food, remember... [ more ]
Janiep Hang in there Mike!!!! I'm so very sorry that you had to lose your wife to this horrific disease!! That is so sad! I can't even imagine going thru all this without my husband by my side. He is my rock!! Your wife will see you thru this! She is now your guardian Angel looking out for you from above❤️ You can do this and I swear it will get easier. It just takes time. Lean on those you love. Btw I do take VSL probiotics which is a prescription and has helped me tremendously!! Ask your GI about... [ more ]
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J-Pouch ForumsGeneral Discussion
General Information for a lost j-poucher!
YB Y2K Bug
Y2K Bug Thanks Winterberry! [ more ]
Winterberry Diagnosing colorectal cancer early when it is in its early stages and has not spread to other organs or to lymph nodes, is the best chance for recovery, plus any treatments before or after surgery. I hope your friend is recovering quickly. [ more ]
Y2K Bug Hi Winter, thanks for the info and taking the time to reply. Sorry for taking so long about it. I was speaking to another friend on Monday and the reason I hadn't seen her for so long was she was also undergoing treatment for a bowel cancer and an ileostomy! So this information is double worth it [ more ]
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J-Pouch ForumsHelp! Need advice now!
After 20 years I'm losing my pouch
Olive OilOlive Oil
Mysticobra The end is really not as bad.... in fact. Let me put it this way. It's all good. The one thing everyone tries to avoid I have. And it's pretty good compared.... and I can compare...to suffering with no end in sight. Good luck. You sound prepared. I hope you have it as good as I did when you get over to this side. It can be wonderful. Just another way to poop. Richard. [ more ]
Olive Oil I have Crohn's and chronic problems with my pouch so it's the a two for one. I will have adhesions removed and have an ostomy at the same time. [ more ]
BillV Hi Olive Oil, I’m sorry to hear about the problems you have been having with your pouch. I don’t know about the current room accommodations at either Mayo or Cleveland, but the main consideration is the level of care you get there. Three years ago, I had to have my j pouch removed and I strongly wanted to avoid having an ileostomy. I was fortunate to find Dr. Ernest Rhenke in St. Petersburg, FL who gave me a BCIR, a procedure that does not require having an external bag with its associated... [ more ]
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J-Pouch ForumsGeneral Discussion
Question about biopsy result
mamaswansmamaswans
Kara Fred I had terrible cuffitis; the spasms and pain were awful. I used the mesalamine suppositories and hydrocortisone cream. Because I went to an ileostomy (now a K-Pouch), I had a rectal mucosectomy and life is so much better. [ more ]
Jan Dollar Short answer, yes. Cuffitis can cause the same symptoms as pouchitis. The treatment is mesalamine or hydrocortisone suppositories. It is a common complication. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Ostomy reversal was sooo easy
BD Blake D.
CeeeeCeeee I prefer the liquidy output because it is easier and faster to feel empty. As long as I have full control.....I do........the thickness of my output does not matter to me. It is the "new normal" for me! [ more ]
Nora S. I have tried it all, even prescription! It is frustrating, but knowing this is my norm makes it easier. At least I know there is nothing wrong! But I've tried it all, to no avail. Just a waste of my money. I stock up on barrier creams!!!! However, my life isn't impacted too much, I just need to make sure a bathroom is near or, if I'm going hiking or something, I just limit my food intake so I won't have to go. Life is much easier with a pouch as compared to life with UC however! I'll take... [ more ]
Scott F Nora, have you tried soluble fiber, like Metamucil? It generally thickens things up. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil vs Psyllium Husk
B bwils
Scott F The health-food-store psyllium powder should be very similar to Konsyl. The dosing might be a guessing game, though. [ more ]
bwils Thanks. I have to get some next time I go to the US. Can't seem to find it in Canada. [ more ]
TinCan I actually have had much more success with just the powder (Konsyl). It's a bit like a sawdust smoothie - both in terms of flavor and mix-ability - but works great for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch group???
MIKEEYMIKEEY
MIKEEY Thanks so much [ more ]
zeep Looked up CCFA.org and there seems to be a support group in the Beth Israel Phillips care center in Union Square. its not j-pouch specific but given broad IBD issues group, I'm sure j-pouch problems are frequent topics. you can find more info on their website for meeting times and address. [ more ]
MIKEEY Hello Winterberry- I will try all your suggestions and I so hope you are doing well. Thank you and God Bless, Michael [ more ]
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J-Pouch ForumsPouchitis
Antibiotic Dependency
Richard_UKRichard_UK
Jan Dollar Another thing to understand is that you do not become immune to antibiotics. Bacteria that is exposed constantly to antibiotics can become resistant to them by mutating to adapt to them. This is why they can lose effectiveness and why rotating antibiotics or taking them intermittently is favored. How long does this take? It varies. It can be decades, years, or months. Or, it may not occur at all. If you are lucky, perhaps a long course of 4-6 weeks will cause a asting remission. Jan [ more ]
Scott F "Antibiotic-dependent pouchitis" just means that the pouchitis can't be controlled without continuous (or nearly continuous) antibiotic therapy. Folks whose pouchitis is sensitive to a variety of antibiotics usually rotate between several different antibiotic choices, switching to the next one in rotation every week or two. This is thought to reduce or prevent the development of antibiotic resistance by the gut bacteria. Some folks here have done this for decades. Some of us have fewer... [ more ]
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J-Pouch ForumsGeneral Discussion
Capture a bit more energy?
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Eek on the apnea. I'll check that out, too. I am drinking electrolytes as I type! [ more ]
Former Member Feeling hungry, especially not long after eating could be a sign of an electrolyte deficiency. I would normally say; a sign of dehydration, but the term dehydration is often misconstrued. Like myself, you could be confusing the craving for electrolytes, especially potassium as feeling peckish (hungry). With a J pouch, it's often stated we must increase our fluid intake to compensate for the fluids we can no longer absorb due to the loss of the colon, so we must remain hydrated, which... [ more ]
Spooky Yes, I definitely echo everyone else. Time for blood tests. Every time I have felt tired and run down, it has almost invariably been the result of low iron/hemoglobin (once it was potassium). After my collectomy, I was so chronically tired that I had accepted the situation as my new norm. Turns out my former GI's office had neglected to inform me, after blood tests, that my hemoglobin was hovering around 8.5 to 9. I FINALLY my iron levels sorted out, and I can't believe I walked around like... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis - severe case scenario?
TrojanTrojan
Ram I have been on pouch for the last two months. Frequency is around 20 and unrelenting . Also developed fissures and hence makes the whole process painful. The Sigmadoscopy suggests pouchitis. Anyone can offer advise on how to handle this trauma? [ more ]
Jan Dollar Trojan, it seems as though you have unique insurance issues. I have not heard of being sent to different underwriters for additional or chronic treatment. As for myself, my GI has always been good about authorizing antibiotic scripts to have on hand for travel. The last thing you want is to be "stranded" in a foreign country without appropriate treatment. Even in Europe, getting prescription meds is a hassle. In the Czech Republic I could not even get a decongestant without a prescription. I... [ more ]
DJ H I am someone with chronic pouchitis that has also travel extensively internationally (China, Thailand, New Zealand and more). Sometimes I have been on excursions that are remote with no chance of getting any meds I might need. So I always pack with anything I think I might need. For me that is enough Cipro to cover whatever type of flare I might have for the duration of the trip, Tucks wipes, Gold Bond powder, pepto, cold medicine (both daytime and nighttime versions), Imodium and Tylenol. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal fistula.....
DN D. Nocerino
pammieskrh I also have an anal fistula for the past two years. Has anyone here had one repaired successfully? [ more ]
Burke I this last year have had a anal abcess and fistula which goes from the perianal abcess inside the anal canal and have had seton placement to drain it. This has brought on a new indications diagnosis of perianal crohns and so it has been recommended for me to start using Imuran and Humira. Have any of you had success with Humira for these issues and for pouchitis? your responses would be great. Thanks. " The LORD sustains him on his sickbed; in his illness you restore him to full health."... [ more ]
Jan Dollar Jen, you are a trooper! I probably would have given up on the j-pouch long ago with your issues. One day at a time, eh? Kids make it all worth it! Jan [ more ]
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J-Pouch ForumsMen's Health
Long Distance Bicycling/Running
J JPouchCouple
Doc Edwards For long distance cycling, you may consider optimizing your fat metabolism. It is a bit complicated to explain in a post, but decreasing your dependence on carbohydrates could be a good thing and you would need to eat less. This might allow you to focus on keeping hydrated. A good place to start is the book, The Art and Science of Low carbohydrate performance and websites like www.vespapower.com have a ton of info. I hope this at least helps a little. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Wondering if surgery is my only option?
Laurie McMahonLaurie McMahon
Scott F There are certainly surgeries that remove just the rectum or recto-sigmoid colon. A colonic J-pouch can help with bowel function after such a procedure. The problem is that the remaining colon is at pretty high risk for developing cancer, or (if you're lucky) dysplasia. Given the message dysplasia sends, most people with UC choose a total colectomy at that point, while others (especially if they are feeling well) may delay the surgery. If you have a total colectomy your options are J-pouch,... [ more ]
Laurie McMahon Thanks for your reply, Scott! I am totally ignorant about surgery options. Since the dysplasia is only in my rectum, would that have to remove my whole colon? What are the different types of surgeries? I've only heard of the J-pouch but I'm not even entirely sure what that is! Are there any good websites I could refer to to get more information? [ more ]
Scott F Laurie, low grade dysplasia means you are at greater risk for developing colon cancer. After 18 years with UC the odds start to get nasty. You get to decide about surgery, but you can't eliminate the cancer risk without removing the colon. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Traveling?
Edie A.Edie A.
Edie A. Thanks LJZ!! I'll only be there for about a week. My GI said the prednisone wasn't a cause for concern while I was at the hospital as he told me the dosing would not be too much for too long, I have been at 10 mg twice a day for two days and am supposed to go on 5 mg twice a day until I see him which would have to be after I come back. I have quite enough antibiotics for the trip though so there's no problem there! Thanks for the reply and I'll definitely be careful of what I eat and drink... [ more ]
Ljz Don't know how long you're traveling for, but I would hold off on Prednisone taper until you get back, unless you will be gone for months. If so, I would still wait til I arrived to do taper, and not taper again 3-4 days before return. Make sure to stay hydrated and carry your antibiotic with you, and maybe a second dose in case you need it. Try to watch your intake while there! good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
What do you wish you had known/done earlier?
lholdemlholdem
Mountain Baker I wish I had known about bidets, Calmoseptine and VSL. I learned about all of these things on this site. So thanks j-pouch group. Theresa [ more ]
skn69 Diet. I wish that someone had spoken to me about the benefits of certain diets on my k pouch. (K pouches require a specific diet in some cases...in mine I found real benefits from a disassociated diet) . Also the need (not always but for many of us) for supplements and water. Also pills...it took me years to realize that coated pills and long dispersion meds just do not digest in my pouch so pill cutters, crushers and liquid and gummy forms of vitamins and meds work best. Hope that this... [ more ]
jonw If I knew then what I know now (22 years post J Pouch) I would be asking about Vit B absorption (can be very serious if left undiagnosed) + long term affects of surgery IE: abdominal adhesions (You may be lucky or you may not but preperation is the key). [ more ]
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J-Pouch ForumsHelp! Need advice now!
night time poo
L lab
Scott F This has been written about many times here. It might be best to start by searching for some of those posts. [ more ]
jonw Hi, You dont state how long you have had the J-Pouch or if it is for solids or wind or both (most likely). In my experience (22 years post J-Pouch) there is no definitive answer to this its just a matter of not eating or drinking too late in the evening. I personally find a probiotic yogurt on an evening helps me. I dont know if the probiotic or just the yogurt that helps. You could speak to your docs about things like charcole tablets to thicken things up and absorb the gas but be warned as... [ more ]
Sharon W Me too. I have finally gotten it thick enough to not have butt burn, but I'm still getting up every 30-40 minutes all night. I'm 8 weeks out of takedown. [ more ]
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J-Pouch ForumsGeneral Discussion
Humira -- 14 months post -- bizarre neuro, can anyone relate
thumprharethumprhare
Scott F The amount of alcohol in Tincture of Opium is trivial, certainly not enough to cause a problem with Flagyl. I take Lomotil at bedtime, and occasionally if I'll be away from a bathroom for an extended period. [ more ]
butmybutt Hey Scott, I also take Tincure of Opium so taking Flagly is contraindicated with any that has alcohol. Going to stop taking the Opium and start taking Morphine Sulfate and then start taking Flagyl to see if I can get better results. Do you take anything to control gut motility or gastrointestinal timing? [ more ]
Scott F But, it sounds like Cipro may have failed you, but that doesn't mean "the antibiotics" have failed. There are plenty of choices, most of which are completely different from the others. If you can't find a single one that works, combinations can be effective. When Cipro stopped working for me I added Flagyl, and that's been good for a couple of years so far. [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
VSL #3 DS pricing
Scott FScott F
butmybutt I tried to have my Dr write me a scrip for VSL#3. Insurance wouldn't pay for it. Found out I could buy it cheaper at Costco. Hope this helps [ more ]
Scott F I pressed the issue with CVS corporate and they dug up a discount program (Argus) that will lower the VSL cost to be in line with other local pharmacies. Argus doesn't cost anything, so it may be useful to others. It's certainly more convenient than changing pharmacies. [ more ]
katenet I'm so sorry I missed the top where you said DS!!! I do remember that the mail order option also saved money. if you are not locked into CVS compare with the other pharmacies in the area. I have saved a lot sometimes going to a small pharmacy not a big chain but it depends on your area. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
How to take VSL-3?
J J9Pouch
J9Pouch Thank you, Lewis! I've asked a few times now if my surgeon would let me try cortifoam, which worked great for me when I still had my colon, and to no avail. I found it much more comfortable than an enema. Maybe something to consider if you find yourself having to consider enemas or suppositories again? I hope your scope goes well! Best wishes, janine [ more ]
lewis J9, The suppositories I was prescribed were , Canasa (mesalamine, USP) 1000 mg. I did not try them for very long, and hated every minute when I did. However, if my pouchitis doesn't resolve with the probiotics I'll have to either use them or enemas. I have a sigmoidoscopy in a few weeks to determine if I've healed up or not. In regard to your surgeon not being willing to prescribe these, I would look for a gastro doctor that will. I've taken so many prescription meds over the years I really... [ more ]
J9Pouch Thanks, all! Lewis, I would actually be *thrilled* if my surgeon would agree to let me try a suppository. Every time I call and beg to try anything other than antibiotics the response is to call in a different antibiotic, and then I take huge steps backwards because antibiotics absolutely destroy me. What suppositories were you taking? Did you find them helpful, even if you didn't care for the delivery method? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Help please
J Jeann
jhills Restless Leg Syndrome I get horribly when I need iron badly! My cells are starving for oxygen they tell me which causes the pain. If it gets too low you may need a blood transfusion. I get iron via iv twice a year since about 5 years out with pouch. [ more ]
Scott F Kara, acid reflux usually doesn't have a deeper explanation, unfortunately, though occasionally it does. The nausea, though, needs to get explained enough to treat the cause. Anti-nausea medication is best limited to a short-term fix or when you're stuck with the underlying cause. [ more ]
Jeann I wish you luck with finding out if you do end up exploring it, Kara, and yeah -- I've brought the nausea/dry heaves up to my GI before but I'll do so again, maybe he'll be able to find something. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Long-term antibiotics for pouchitis
B blufnger03
jhills I've been on and off antibiotics for pouchitis for years and am 15 years out. This last year I've cut out things that cause inflammation....gluten dairy and doing low sugar as they all cause this. I also take probiotics daily. The refrigerated pill form kind and I am antibiotic free!! Keep my bad bacteria from getting out of control. I wish doctors talked about this more as preventative care rather than piling on the drugs. [ more ]
dave hdave ❤️
Jan Dollar I agree that insurance companies are the worst. But they do change opinion if you continue with the appeals. It just all depends on how motivated you are. In regard to chronic vs acute pouchitis, I also agree. But, you should not look at it as 2 instances in over 5years, but 2 instances in two months. All those years in the past without pouchitis don't really matter, since pouchitis risk goes up the longer you have your pouch. Still, two cases of pouchitis is not enough in my mind to make... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
I could use some help and advice from everyone
S SonnyJ215
jhills Not sure if this helps you but I often deal with thick stools that don't empty good from my pouch when I get into dairy and I haven't taken my pill form probiotics. The probiotics keep my bad bacteria under control and bowels flow smoothly. Just taking a little bit 1billion helps. Probiotics are huge pouch relief!!!! [ more ]
Winterberry Hi, Sonny. You are welcome. I'm pleased that it was helpful for you. You are still the same person as before your surgery. You have a j pouch, that's all. No one will treat you differently unless you behave differently. Remember you will be part of the Instagram photos next year, if not sooner. Take one day, or one hour, at a time. Be careful eating a lot of carbs at every meal. You don't want to end up with high blood sugar and diabetes, which will bring a set of health issues such as high... [ more ]
SonnyJ215 Winterberry I'm totally speechless for the amount of time you invested in this well said well thought out message for me I'm completely overwhelmed by this response and a thank you to you I feel doesn't say much but I'm very thankful for this message. This Monday is only a 6 month check in a scene of talking about our upcoming steps I guess to get to following exams at least I think so.. This whole new way of life has been confusing and heartbreaking for me but I'm grateful to be Alive since... [ more ]
See all 6 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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