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J-Pouch ForumsGeneral Discussion
Kefir Grains
GaylaGayla
Winterberry Hello, Capetonian. Grains and roughage do not break down (they are insoluable) and so it comes out the way they went in. Nuts and seeds, lettuce, raw carrots, broccoli stalks, cabbage, are insoluable too. They do not break down. They might hurt a lot coming out or cause some constipation, or even diarrhea as your body tries to flush and push out the roughage. Soluable foods break down in your gut. Zucchini (peel the skin!!), mashed or boiled potatoes, fish, egg, cheese, break down easily in... [ more ]
Capetonian Hi Justin, Thanks for your post. I have been drinking kefir a week now and love the idea of getting in valuable probiotics naturally. I am also take a probiotic supplement, but could be different strains to the kefir I must check. I mix a third cup of kefir with a handful of spinach, some avo, a banana a cored apple, a teaspoon peanut butter and squirt of lemon juice. Process in my Nutribullet and drink up for breakfast. I can't say I notice any j-pouch difference, but I know my gut must be... [ more ]
Former Member Capetonian, I've been trying to really keep grains and processed sugar to a minimum. Similar to the paleo diet but not fully. I find my pouch works best with a diet of lots of meat, eggs, nuts, avocados, veggies and fruits. For breakfast I just eat a banana. Lunch and dinner can consist of either salad with spinach, avocado, turkey/chicken, tomatoes, pecans, dried cranberries; scrambled eggs with some ham or turkey added, salsa, spinach and an avocado; some kind of chicken breast baked or... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis from taking supplements?
Chad44Chad44
Jan Dollar Gee, I would think it would depend on what supplements you took. There are so many and some can contain all sorts of strange things. Jan [ more ]
ChrisS Chad, I take supplements and never have any problems; however when I drink alcohol I do. Seems what works for one doesn't necessarily work for another. Cipro seems to be the only thing that works for me, especially with nighttime incontinence. I'm only about 1 1/2 yrs out from my Jpouch and it's not been easy figuring out what works and what doesn't work in regards to nighttime incontinence, which is my only problem. Let me know if you how things work out for you. Chris [ more ]
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J-Pouch ForumsGeneral Discussion
Diet
BA Bill A
GB2014 I try to ensure I'm hydrated before sitting down to dinner and I drink as much as I want with the meal (a glass of alcohol is excellent for digestion) and "then" I stop drinking for a while after eating. My reasoning is that my guts need water to do their digestion thing properly but if you drink too much water then the guts don't feel the need to extract water from the stool, the food isn't properly digested and gets rushed through you much faster than we want. This is probably a load of... [ more ]
CTB23 I agree, follow your gut! With me, I tend to be a little OCD and find that if I have a routine established, I make sure I don't get dehydrated. Still working on things, only 2 mos out from Takedown. After experiencing severe dehydration and malnutrition (still fresh for me),I am very careful about this issue. [ more ]
LauraElizabeth I was told to avoid drinking while eating because it can cause more gas. We're also supposed to avoid drinking out of straws to avoid gas, but drinking out of straws helps keep me far better hydrated and I don't really feel a difference when it comes to gas. They're just general guidelines - you need to find what works for you. Staying hydrated is CRITICAL, so do whatever you find is best for your body and habits/route. [ more ]
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J-Pouch ForumsGeneral Discussion
Always exhausted
G grandmaof1
Former Member Yeah, more activity, exercise equates to more calories, fat burnt, however, there has to be a balance to maintain the desired weight, otherwise, more activity, less food will eventually result in less weight/body fat, just like more food, less activity will result in increased weight/body fat. However. weight/body fat can be reduced without exercise by reducing the amount of food eaten, although such a method can take longer to achieve the desired results and probably without the muscle... [ more ]
Scott F Exercise makes a big difference for me when it obstructs big meals. I had martial arts classes shortly after dinner two nights per week for a few years. I think that was the biggest factor in losing a bunch of weight. [ more ]
Former Member Exercise alone won't reduce weight unless exercise is excessive and extreme. A reasonable level of activity and exercise, thats fits your current level of fitness, combined with a reduce diet would be more beneficial. Even without exercise, eating far less, smaller portions will make all the difference. Although, your currently level of exercise, is better than nothing and will improve your fitness. [ more ]
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J-Pouch ForumsGeneral Discussion
Exhaustion
C chrfor
aka KNKLHEAD I was more tired than I wanted to be at about a year after my last takedown. I am not sure what changed, but I feel much more energetic during the day now. Yes, I doze off watching television at about 10:00 at night! But I sleep well. A true sign that I feel good is I invent putter projects. I am also exercising a bit more, ten mile bike rides (I try to keep a good pace) almost every day the last few weeks. The advice here is great, but for me I find that exercise gives me more energy, but... [ more ]
Jan Dollar There are somany causes of fatigue that it is impossibe to list them all here. But, the most common and likely have been mentioned. One cause that is often overlooked is chronic inflammation, such as pouchitis. For me, inflammatory arthritis was a big factor and severe fatigue is a signal for me that my arthritis is flaring. When you have chronic pain, you tend to block it out, so a flare can sneak up on you. Sometimes I need a short course of prednisone to snap out of it. Jan [ more ]
skn69 Different sorts of exhaustion are caused by different sorts of deficiencies...I have chronic exhaustion but not always...meaning I expect it but when it doesn't come, I am thrilled. I have found that yes, the number 1 cause is dehydration and loss of electrolytes...and yes, I confuse hunger and thirst very often. I tend to snack when I should be drinking water. I snack when I am tired instead of drinking. So, I am probably over eating and under-drinking...meaning that I am often... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Newly Diagnosed - FAP - To pouch or not to pouch!
FAPqueenFAPqueen
FAPqueen Update time: I finally got my follow up. I need the surgery yesterday. I'm on the waiting list for surgery for next year - J-pouch. Never thought I would be asked" would you like to freeze your eggs?" at 20 years old. It blows. Don't know how to feel about anything at this point But invitro looks like my only option for having babies... I am losing my bowels at 20 and I don't want my children to lose theirs even younger [ more ]
LeahD That does sound frustrating, I'm sorry. I think you should try to find a specialist near you, or at least a surgeon who's dealt with FAP before, and have your GI doctor forward everything to them. And I forgot to mention earlier, but hydration is super important and I'm glad to hear you're working on that now! Dehydration is a huge post-surgical problem, but my mom and I love Nuun. You drop a tablet in water, tastes great, hydrates, has electrolytes, all that jazz! There's also GI Revive,... [ more ]
FAPqueen Hey leah Well they gave information to my aunt (she was the one who came to pick me up) then they called me one at while I was in school and left a message saying I had an appointment the next day but I couldn't make it so I tried calling back repeatedly and no one answered and hasn't answered since. Really frustrating because in the follow up letter I got a ill sternum said they removed polyps and what not and that they recommended surgery And it's grandpa with FAP》mother with FAP》 me with... [ more ]
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J-Pouch ForumsHelp! Need advice now!
what can possibly prolapse from anus?
L Ljz
Scott F Good luck, LZJ! Time seems to be helping, which is excellent. [ more ]
Ljz A full prolapse was not seen on the Defography test, but it was mostly done in horizontal, not squatting position. I do not feel test was done correctly, but surgeon was certain after viewing pics that it was not a full prolapse. Said nothing he could do for me. Couple weeks later I had scope with new surgeon, already had consult scheduled with him, expecting full prolapse and he was surgeon I was referred to for pouch redo. This surgeon also saw film and didn't think full prolapse but found... [ more ]
CeeeeCeeee An internal polyp????? Just a guess. Your surgeon will tell you for sure! Best wishes. [ more ]
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J-Pouch ForumsGeneral Discussion
Biological plug
JeffsmomJeffsmom
Jeffsmom Thank you everyone! So far so good. I'm afraid to be excited! The setbacks feel so normal, how sick is that. I'm always waiting for the other shoe to drop but I'm so hoping that there are no more shoes being thrown at us. poucho, I wish the best for you as well. You really have been through the ringer as well. If you come to NY let me know! dianne [ more ]
Pouchomarx I'm ok. Just finished with iron infusions and going for hernia surgery next month. Small hernia where ileostomy was. Besides some minor leakage here and there I am doing fairly well. Hope things work out for your son!! [ more ]
Jan Dollar Really great news! Fingers crossed that this holds. He's had so many setbacks and deserves a break. You all do! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Argon plasma coagulation of ulceration???
H hattie
Jan Dollar I concur with Scott. But, it is possible to have ulcers that are not responding to other treatments, and coagulation might work. Still, you want to proceed only if it makes sense for you. Particularly when you have conflicting expert opinions, it makes sense to step back and seriously consider your options. Is plasma coagulation dangerous for you? I doubt it, but if your surgeon is not convinced you need it, I can understand your hesitation. One thing though, occult blood loss (loss that is... [ more ]
Scott F If an ulcer is actively bleeding it may be necessary to stop that bleeding. That's not what you're describing, though. Whether your anemia is a result of bleeding from these ulcers is less important than what's causing the ulcers, and how it's being treated. If that's not addressed, then it doesn't matter whether you laser this batch, since more will form. is this pouchitis? Cuffitis? Crohn's? There are treatments for each of these. When the treatment is effective then the ulcers will heal. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need advice about surgery. Please help!
J JS2016
*Zoe** Hi There, I am sorry to hear that you are not feeling well. I know how you must feel as I also went through a very rough time with my UC. I had surgery in 2014. It was emergency surgery as my bowel perforated. I waiting 12 months and then decided that J Pouch surgery was for me. One thing I would mention without trying to scare you is that the surgery is pretty big and does come with some complications. Hopefully you will be lucky enough if you decide to go ahead not to have any problems. [ more ]
CTB23 I had my first surgery about 7 mos. after being diagnosed with Ulcerative Colitis (follow up colonoscopy showed moderate to severe pan-colitis with dysphasia). During the months prior to surgery, I had 3 hospitalizations, blood transfusions, TPN, 3 weeks in rehab, tried several meds. Including Remicade, didn't work, had shingles and a skin condition called Erythema Nodosum (less than 5% of those with UC get it), unable to dress myself or walk due to severity of swelling in legs and pain. [ more ]
A2ndChance My husband struggled with UC for 2 years before his first surgery, which removed the colon and connected the small intestine to the rectum. It wasn't an answer for him with 6-8 bm/day, plus several at night. He found an alternative to jPouch, the BCIR (Barnett Continent Intestinal Reservoir.). It has given him his freedom from bathrooms and a new life. Everyone's body responds differently to surgery, so it may not be the answer for you. I strongly advise you learn all you can about your... [ more ]
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J-Pouch ForumsGeneral Discussion
low energy, no large colon
M maddie18
Jan Dollar Actually, B12 is absorbed in the terminal ileum, not the colon. So, unless you had some of your ileum removed, or have pouchitis, you should be able to absorb it. Plus, if you are older (50s, 60s or more), you can tend to be deficient, even with a colon. Jan [ more ]
maddie18 thanks for sharing [ more ]
Itsanewworld Hi. I went for my annual physical 2 months post takedown and my dr put me on vitamin B12 as he found it to be low which is a direct result from not having a colon. [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber/sleep/tenesmus
ConniesConnies
Janiep Thanks Scott ... you're right! VSL#3 DS Janie [ more ]
Scott F Just so no one goes searching for a nonexistent probiotic: the correct name is VSL #3 DS. The DS (double strength) form is by prescription only, and some insurance plans cover it. I use a lot of it. It works best at preventing pouchitis. [ more ]
Janiep Connie I had the same problem and some days (nights) are better than others. I always take 2 Lomotil and 1 Imodium before bedtime. I also started a probiotic that is a medicinal probiotic that has changed my life! It's called DSL#3 which has to be ordered by your gastro doctor. It comes in powder form and needs to stay refrigerated. I mix it with applesauce and it's really changed the quality of my life since the reversal!!!!!!! Try it... it can't hurt!! Good Luck Connie and hang in there! [ more ]
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J-Pouch ForumsPouchitis
Is this pouchitis?
L Lu31
Scott F If you've had gastritis before then that would be my first guess. It could also be a peptic ulcer, and there are other possibilities. Perhaps you could place a phone call to your doctor and discuss whether a visit is necessary. If you treat a peptic ulcer as gastritis you might just mask it. [ more ]
Lu31 It gets me up at night a bit more than normal. In the day I'll go more but that's just because trying to relieve the pain...not an urgency. Today it's been more burning so maybe it's a gastritis flare up? In the past with gastritis my symptoms were mainlt nausea which is why I thought pouchitis and not gastritis. [ more ]
Scott F You can't fight it on your own without knowing what you're fighting. This doesn't sound like pouchitis to me, since you haven't described any connection between the pain and pooping. Lots of us can start antioibiotics without an office visit, but that's usually after we've established a clear pattern that is very likely to be pouchitis again, and reached an understanding with our doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
BM help needed!
GoofeegutzGoofeegutz
Goofeegutz Thanks everyone for the tips! I've been taking fiber at breakfast and dinner and that has helped. I got me some decaf coffee too. I just have to find the right balance! [ more ]
Spooky On the upside, 5-6 BMs only a few weeks post takedown is fantastic. Many pouchers do not ever reach that low in frequency. However on the flipside, thick stool and straining to pass BMs is not fantastic, and definitely something you want to avoid. Even now, at almost 9 years post takedown, I prefer my stool to be slightly looser as they are easier to pass. Your stool consistency may naturally improve over time as your body continues to adjust, but in the meantime there are things you can do... [ more ]
CeeeeCeeee A bowl of oatmeal does the trick for me. If/when I feel the need for some help a bowl of oatmeal makes it easier to pass BMs. If I want really fast results I eat a Granny Smith apple....skin and all. Keep hydrated! Use a barrier cream and make sure your back end is really clean before you apply the cream. I, too, have a bidet and it is the best thing I invested in after my takedown. I've had it almost 15 years! Best wishes! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF Anyone?
Y yogijano
chantalword I'm having a csection for sure. I have a rectal vaginal fistula so my OB said vaginal wasn't an option. She did say that she tries to encourage jpouchers to have a vaginal birth if they are comfortable with it, but there are certain ways to do things that help prevent damage to the pouch. She didn't go into detail because I'm not delivering vaginally but she has a lot of experience with jpouchers. Good luck with your decisions. I was pretty set on a csection before I saw the OB but if it... [ more ]
yogijano Hi susbo i am in the same boat 17 weeks along and have had conflicting advice from everyone on delivery plans. I had 2 doctors suggest vaginal and 2 doctors suggest c section . So I'm tied ... I was presented with the risks with both; my primary OB and my high risk consultant will continue the discussion I would prefer vaginal if I can . Though it was interesting my GI specialist at first said c section was the safest option for jpouchers but just recently has since said there has been more... [ more ]
Sweetie1234 Thanks Susbo! Obviously I'm not pregnant yet, but I've met with a high risk OB and she recommends a c-section for me. I've had several surgeries to repair a fistula and with the jpouch she thinks that's the best option. I asked if they could go through my previous incision (which runs vertically) but she said there might be too much scar tissue and she wants to go low to avoid damaging the pouch. So I'll end up with another scar that runs horizontally near my Bikini line. She did say that I... [ more ]
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J-Pouch ForumsGeneral Discussion
CDC (center for disease control) concludes link between flour and E-coli
skn69skn69
Scott F This contamination has nothing to do with the reasons people might choose to avoid flour in general. Almost any food product can become contaminated, if there's a handling or packaging screw up. [ more ]
Patricia Walker Not surprised re flour. alternative practitioners told me to avoid flour a long time ago [ more ]
Jan Dollar Not good! Jan [ more ]
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J-Pouch ForumsPouchitis
What does pouchitis feel like?
T tshirt
tshirt Hi Shaney, Yes things did calm down and my pouch was fantastic for four months - then I developed an abscess and turns out I have a fistula - so back to an ileostomy while this heals (I hope) though I will likely need a repair. Best wishes and hope all settles down for you. [ more ]
shaney Hey Tshirt and Sunny, Just wondering how you both have made out? I and just a month takedown to my pouch and things have changed for me too. Things were great and I started taking VSL3 Probiotic and have felt different and BM's are different ever since. Do I need to just deal with these things for a while? Thanks so much! [ more ]
SonnyJ215 This my first time to this forum I think it's helpful for older and newer jpouchers ... My jpouch is one month old today and Yesterday I experimented with lactaid milk for the first time with plan crispix cereal and I don't think it agreed with me to well I had quiet a few BMs and burning being I don't really know the symptoms of pouchitis I was very scare I may have had between the urgency frequency and burn .... Has anyone else experienced this before with lactaid milk? [ more ]
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J-Pouch ForumsGeneral Discussion
Something blocking output
U UjohnjC
Spooky The bumps sound like hemorrhoids. If they are large enough they can theoretically make stool difficult to pass, especially if there is accompanying local inflammation. Hemorrhoids are usually also associated with pain and/or itch and sometimes bleeding, so if those symptoms are also present then hemorrhoids are the likely culprit. That said, you may have more than one problem going on. Difficulty in passing stool can often be the result of stricture (narrowing) at the opening of the pouch. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula query
D Deedeeh
Deedeeh Hi Alisha thank you so much for your reply. i really appreciate it. i am sorry to hear that you have had so many problems!!! it can be a tough road. I have a jpouch and was diagnosed first with crohns and then uc so i went ahead with the jpouch about 4 years ago. my only problem to date has been frequency and watery stools like yourself. I did have an anal dilitation a couple of months ago as I had a stricture and the frequency has definitely reduced. i am now only getting up 2-3 times a... [ more ]
Alisha I'm definitely not an expert, but I have had several (4-5) fistulae since 2006. Mine have all been confined to my perianal area, with at least one infiltrating my vagina. Personally, my fistulae always started with an abscess that I could feel that was really tender & painful, swollen & kinda hot to the touch & I would run low-grade fevers; when I finally looked at it with a mirror, it looked almost like an inflamed cyst. However, I never had an actual fistula form on its own. [ more ]
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J-Pouch ForumsGeneral Discussion
New Research Points to Fungus
BlakeBlake
skn69 I read the article last week...they believe that it is a combination of a fungus and certain bacteria mixing together...if you have already lost your colon...Well it is too late to get it back But if you are still fighting the crohns then it may help you in the near future...they are still testing...not sure how much of the study results are ready to be used widely...here they are talking about it but not discussing using the results....I guess like many other findings...it is to be... [ more ]
hattie ❤️
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J-Pouch ForumsHelp! Need advice now!
Internal Hemorroids - soooo painful!
SallyStewSallyStew
Scott F Anal fissures are more notable for pain than bleeding. [ more ]
SallyStew Thanks Scott F. I am straining a little. Never had an anal fissure, but was wondering if that could be it. I'll read up on it. . . could there be a fissure without the presence of blood? [ more ]
Scott F Perhaps you've developed an anal fissure? In either case, are you straining on the toilet? Stool consistency becomes especially important when either hemorrhoids or anal fissures are involved. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis Treatment if Canasa is Not Working
KQ Kevin Q
Kevin Q Thanks Carlos! I've had my pouch for 8 years and this is the first long-term complication I've had, so I suppose I'm "lucky" in that regard. Good luck with your pouch. It will get much easier as it adapts to its new function. That's interesting about Pentasa. Even though they're both mesalamine, it seems like I could possibly respond better to a different formulation. I read you can also take oral pentasa as well. Definitely another option to explore. I'm still figuring what diet works best... [ more ]
Carlitos Hola Kevin I got a strong and painful Cufittis immediately after my ileostomy closure and my Dr. prescribed PENTASA 1 gr for 3 months. I only have 1 month with the treatment but, after the 1st week using the suppository every night, the blood was gone and the pain has been slowly fading out. It is Mesalazine as well, similar to Canasa, and it might suit you better. Also I only have 1 month using my pouch and I'm still trying to figure out which diet is the best for me, and a banana milkshake... [ more ]
Kevin Q I'm wondering if I should try to push for a mucosectomy rather than trying a biologic. I suppose there are risks associated with both. Although biologics seem to do wonders for many, in light of the cost and potential ongoing side effects, I wonder if a mucosectomy would be a safer option, in terms long term success. FYI, I have been on Canasa permanently for a year and a half and have also tried Anucort. Although the Canasa keep my symptoms at bay for the most part, I never felt totally... [ more ]
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J-Pouch ForumsGeneral Discussion
feeling uncomfortable urge to have bm before takedown..
Becky18Becky18
Former Member When I had my temp loop ileostomy, not only did I pass mucus but I also had BMs, which were of the same constistancy as my Stoma output; although I never experienced any urgency and it only ocurred once or maybe twice per week. I didn't give it a second thought. I would of thought, if Cuffitis, they would be bleeding. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Spasms with urgency
John95John95
Scott F Dunn, if it's pouchitis then the Cipro will probably work. If it doesn't then the next step might be to reexamine whether it's really pouchitis. There are other treatments for pouchitis, best used when the diagnosis is reasonably certain. [ more ]
shaney Marystrawberry, Both of my Docs, GI and Surgeon are tied to an Internet program that allows me to ask them questions, kinda like email and they respond within a day. What I am saying is I would ask them both as I Really trust them both. My Surgeon is a God to me sonIbwould probably lean on her. Sorry, I know this is no help. Good luck! [ more ]
shaney Dunninator,, that stinks! I've not taken either one yet so I can offer nothing. Sorry, wish I could. What symptoms have come back? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage
D.D.D.D.
skn69 DD, So sorry...Can you gently (very gently) drape your body over the ball (sort of like a melted cat?) frontwards and then backwards? You sort of kneel down with the ball in front of you and put your arms over it then roll gently forward until your tummy is draped over the ball...Then you just allow it to sort of hang over the ball...your hands can stabilize you in front of it and your feet stay on the ground behind it...then you rock forwards and backward and then side to side. You can do... [ more ]
Osama mady Zonda is a plastic tube they insert it through the nose until it reach the stomach, it's takes out the liquid from the stomach if u have a blockage [ more ]
D.D. Another partial blockage...I am trying the ball...and moving around as much as possible. The difficult part is trying to stay calm and focused [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch for crohns colitis
HazelTHazelT
HazelT I have been on most medications and do not do well with them; steroids just kill me, I felt quite unwell on biologics, and even on the low grade drug asacol I had a very bad allergic reaction on the high dose of it which is how I ended up in hospital and eventually having surgery. So I really am not relaxed about meds at all. I have a contact who has a son with UC who takes cannaboids to control his UC and is off all meds; wondering if that would be an option instead of thinking I need to... [ more ]
Scott F Hazel, I really recommend that you relax your objections to medications. I'm not suggesting you ignore serious side effects *that actually occur*, but you are likely to need medication to thrive. Doing everything you can with diet is perfectly reasonable, but assuming it will be sufficient is less reasonable. This applies whether or not you have a J-pouch: being willing to do all that's necessary to get well and stay well is often the only way to have any chance at all of being well. Asking... [ more ]
HazelT Thank you, I hate all the drugs for Crohns so maybe this wont be an option for me. Although I do plan on staying on scd diet and low dose naltrexone so maybe that might be enough. A bit apprehensive now I must say, would hate to go back to being sick again [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vsl today? (day before pouchoscopy ?)
H hattie
Scott F Hattie, this won't make a huge difference either way. Missing a day of VSL is not a big deal, and taking it is okay, too, though you're about to flush it right out. I wouldn't take it late in the day, though. I'm sorry you're going through a full colonoscopy prep for a simple pouchoscopy. That's overkill, IMO. Perhaps you can ask your doctor before the procedure if a more modest prep would be okay next time, since there's no colon to flush. If so, you'll have to write it down for next time,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cant f*****g move
C Clark_00
jls456 When I get that bad,Ilex and a few Norco's really help me a lot. Ilex works wonders,however the price has almost doubled in the last year. [ more ]
drone3 I had a nasty fissure 6 months ago. This is what helped me; 1. Pawpaw ointment (this is the best ointment i tried about 10 different varieties) 2. Nifidepine , this is much better than the other one that gives you headaches (i had to get it made up at the chemist) 3. Stop eating veges as they cause to much gas. Just go with protein (chicken, fish) and rice. [ more ]
Mysticobra I've been there. I know what your feeling. Something that doesn't go away day or night. It gets unbearable and will beat the strongest down to pulp. Never posted your way. But I'll be damned if I wasn't saying it in the bathroom! No painkiller can take it away. I hope you can solve you issue. Lots of good advice here. [ more ]
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J-Pouch ForumsGeneral Discussion
Laprascopic surgery-how incision site healing well?
C CTB23
CTB23 Went to surgeon today-incision site is healing well! Also, back to work! Feeling great! [ more ]
skn69 I've had a few laparoscopic procedures and I am generally sore over the 3 keyhole openings for a few weeks. Some surgeons steri-strip them and others suture them, just depends on the surgeon. I have had 1 that bugged me for quite a while and it remained red for up to 6 months. Other than that, they are usually fine. My mainline suture lines usually dehysse but I don't have problems with Lap. Sharon [ more ]
Bobish I am 6 weeks out from part 1 of a 2 part jpouch process, meaning that i have the major abdomen incision, but it's not yet been reopened! My surgeon was excellent and i was fit and healthy (and relatively young) before surgery. My bandages came off after 4 days with no need for any more. That said my incision Mark is still a little numb (a bit of nerve damage as i have no feeling in the surrounding area), and my core is still weak and sore (I'm not ready for sit ups yet!) There's one patch in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Opinions on specific surgeons at CC?
M MrsSchmidt
Ljz Mrs. Schmidt, By now I expect your husband had his surgery at CC! I expect he had great care, as most are very impressed with CC surgeons as well as the ostomy and other nurses who support you after surgery. I truly hope he had that experience and is recuperating comfortably. There is an adjustment period with each step, so be patient and ask specific questions here if needed to aide in his recovery. It's a long haul, but so many have had success and are now living with much better and... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Vaginal problems
F Filipa
LC They might recommend a seton. I have one right now and it has really helped with the pain and inflammation. The recent studies seem to indicate that a seton followed by one of the anti-TNF alpha biologics has the best chance of getting rid of a fistula. Unfortunately they are horribly difficult to get rid of and none of the treatments have very high success rates. Good luck! [ more ]
Filipa Thank's for the answer, for now they believe it could be from the dilatation I had to have, they that it could have ripped something inside... I think Monday I'll have some news after the MRI. before I had my colon removed I tried biologics with no success, remicade, humors, done them all, so I' m hopping they won't be necessary... Let's see... [ more ]
Gentle Now Hi Filipa, I know it's scary when new things pop up, but you will be ok. The MRI will give good information. Your doctor may recommend biologics (remicade, Humira, Cimzia, etc) if they suspect your immune system is causing the fistula formation. People have had good responses with these. Hope all goes well for you! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Surgery might be ahead - a few questions
N Nicolajs
LeahD Hi Nicolaj! First and foremost, welcome to the site! I'm sorry to hear you're having issues, but everyone on here is super friendly and ready to help, which I'm sure you've noticed by your thread's lovely contributors already. I'm just adding my two cents, since it's always good to hear from a wide range of people. I don't have UC, though; I have familial adenomatous polyposis, so I don't know how our diets might differ, but I do have the j-pouch, so I'll give it a go, anyway: For your first... [ more ]
mgmt10 I've had my j pouch for 6 years now. I failed all the meds and my UC was severe. So surgery was was really my only choice left. BEST THING I EVER DID! I have no diet restrictions, no urgency, no meds, and I use the bathroom an average of 4-6x a day. No more UC! The surgeries are tough....not going to sugar coat that but for me it was totally worth it. There's an adjustment period after you're all connected that may try your patience but with time you can go back to life as usual. Best of... [ more ]
Scott F Nicolas, there are two key factors driving surgery: quality of life and cancer risk. Active UC dramatically increases the risk of colon cancer. People differ in how they deal with the second factor. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
What part of colon used for J-Pouch?
C Capetonian
Catinthehat I've had an ileal j-pouch for about 8 years due to Ulcerative Colitis. I take psyllium husk powder and VSL#3DS twice a day for regularity and to maintain intestinal bacteria. For occasional constipation I eat about 6-8 boiled prunes (prune juice works too) and if that doesn't work I take a couple of Senna pills. However, I recommend talking with your Dr. before doing any of this (except maybe the prunes) since it is so soon after your surgery. If I have any kind of problems, a diet of white... [ more ]
CTB23 Coffee hiss a way of going right through me. Chai tea works much better for me. [ more ]
Capetonian Scott and CBT23, thanks your advice is realistic and reassuring. I am drinking 1.5 to 2 litres fluids a day, mostly water with some pure apple juice for flavour. My addiction is freshly ground coffee, but I only drink 1-2 cups a day. CBT23 - what was your issue with coffee - did it cause problems? I am now NOT going to worry about pouchitis, sanity (Scott) has prevailed! I am going to stick to the low fibre/residue as per dietician. I guess my chilli beans and veg yesterday was a biiig... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Feeling nervous
S Sada
Capetonian Hi Sada, I see your takedown is Tue Sep 27, 2 days to go !!. I am 2 weeks post takedown, and still adjusting. I actually miss my stoma and its routine a bit, as it was really quite easy, and I sort of came to terms with the physical side. Post takedown is a new journey, and I am far from settled, but am hopeful and positive it will bring a new lease on life. Literally, as the Step1+2 was a lifesaver, Step 3 is more of a convenience and image boost, the way I see it. And if you have the... [ more ]
skn69 Sada, I had my k pouch done at 18 because I felt that I could not develop as a woman with an ileo (this was in the '70s when there were very few options and 0 communication to the general public about IBD, UC or any other bowel problem...)...I was right. I am rather shy and prudish is many ways...I could have never overcome my natural shyness with an ileo or lived the life that I chose to live...I traveled throughout Europe and the Middle East, settled in France and lived a rather... [ more ]
Mysticobra Confidence and a positive attitude goes along way. Because this stuff can really get you down. Best wishes. Richard. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
UC-like, unstoppable, large amt diahrrea
SW Sharon W
skn69 Hi Sharon, I am so, so sorry...our guts have the worse timing ever. Firstly, I do not line up when there is an emergency situation, I scream at the top of my lungs if need be and rush to the 1st stall that opens up...(I just say, 'about to have a bad accident!!!' and ladies move out of the way or I go to the boy's room if there is no line-up...don't care, it is better than an accident!) Next, stress can cause diarrhea, so can strong emotions...you body does not differentiate between the good... [ more ]
Osama mady One week after my first surgery I went back to work at office - in the toilets my full ilostomy bag fall down to the floor and u could imagine what a mess was there on the floor - I had to clean the floor before any body comes in the toilets - after that I go home changed my bag and went back to work - I should wait until the second surgery to go back to work - avoiding the question of the other works about the bag that I have u under my shirt was very hard - [ more ]
Former Member I too am sorry to hear what you've experienced and I've no need to imagine it either or how you're feeling. I experienced similar and at the time, I still had a colostomy bag. For just short of 24 hours, I had to constantly empty the the bag, it will fill again before I was able to leave the bathroom. Once the bout of diarrhoea began, the bags would fill to the point of bursting within minutes; looking like a mini airbag attached to my stomach. Test confirmed it was some kind of food... [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Only getting 2 days wear time☹️
Grandma6464Grandma6464
TE Marie I burp mine from the bottom. The filter things are just on some I have. I am trying to use the first in first used method. I had stool coming out of the filter area onto my underwear for around a week and had enough of it. I have covered it ever since. It also stunk when air did make it out but you are right Richard, they don't really work. [ more ]
Lambiepie Yeah, I know, Richard, I've gotten no benefit from them. I understand that they work better for colostomies, which are drier. I used the stick on ostovents for a while, until they occasionally started peeling off when I least expected it. That made me nervous, so I stopped. Now I just excuse myself from the room, open the bottom of my bag and let the air out. Or warn my family in the car that I'm going to do that. No worse than what they do with their coloned bodies! [ more ]
Mysticobra I really don't think those things work well anyways. What are they for? They don't let any excess air out at all. I just pushed on mine and the air just goes from below my waistline. If I push the bottom it just goes back to the top! If I press and hold. Nothin. Nothing comes out the filter. [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
Dr. Judy Collins @ OHSU? Or other?
LorsallLorsall
LoriB Did you find someone in the Portland Oregon area? I'm having similar issues. I just hate feeling like a Guinea pig... [ more ]
Allison I really like Dr. Monina Pascua. She listens well, is agressive and doesn't give up. She is in Oregon City. She was recommended to me by my awesome surgeon, Dr. Patrick Lee. Good luck and post your results - so many are having these same issues. [ more ]
Subzeromambo I may be having the same problem you are, i.e. getting passed from doctor to doctor in Portland because no one can figure out what to do. I have tried to find out as much as I can. Here is a little information. Dr. Mark Whiteford is the choice of many nurses and doctors for themselves and family members. He removed the colon of a friend (an oncology nurse) in July and she ran in a half-marathon in October. I also found Dr. Judy Collins' abstracts. She has published 20 papers in a ten year... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
long-term antibiotics (for fistula or other)
GN Gentle Now
JJA I've been rotating Levaquin and Xifaxin (2 weeks for each, then swap) for about 4.5 years for poichitis. After using entocort on top of that but being unable to wean off without flare, I stopped that and added Immuran (while continuing to rotate the antibiotics) -that's been about 2.5 years on that combo now and all is working great! [ more ]
n/a I was on antibiotics for a year, and they really didn't seem to do much for my fistula. Time and a seton seemed to help more than anything as far as my fistula was concerned. (However, still have it after 5+ yrs). [ more ]
Jeffsmom My son has had fistulas for a few years now. In our experience, the antibiotics have not worked. However, his fistula is all internal and he has an abscess as well. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Takedown - Positivity?
J JordySimo
JordySimo Very surprised that you both didn't have catheters in... I'll have to look into that. Can't stand having them taken out haha. But yeah I hope it's a walkover . Thanks again, I'll keep yous posted! [ more ]
GB2014 My takedown was pretty easy. I'd also read the bad things people said; about how going for the first time would be like "shitting glass" etc but none of them happened to me. They gave me a day of no food, then a bit of food to get things going and then I was out on day 3. Pain wasn't an issue. No catheter. I was cautioned against immodium at first. Your guts stop in shock after the op, food gently gets them going again, you don't want to then be taking immodium to slow them down again. I was... [ more ]
CTB23 Like you I was also more nervous and stressed about my takedown than I was about my first two surgeries. As it turned out, this has been my easiest recovery of all. Good luck with your future surgery and keep us posted on your recovery! [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
IBS or Adhesions?
RodshunnyRodshunny
skn69 Hi Susan, So sorry to hear that you are having so much trouble...I was sort of hoping that 'silence was golden' and that you were happy and healthy and too busy living your life to log on... I have a couple of thought...first, yes, adhesions could be the culprit especially if you feel the obstructions/blockages occurring in the same spot each time. (sometimes you can feel the exact site, sometimes not). The problem with adhesions is that they are very difficult to see on any sort of x-ray or... [ more ]
Scott F Susan, you could easily have multiple things going on. IBS (and IPS) doesn't cause obstructions. Neither does diet, in general. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
What is 'j-pouch norm'
A AndyS
mgmt10 I had to be dilated too after takedown. And I had to repeat the process 5 times before the scar tissue stopped forming. Your description of not being able to empty sounds like the stricture is still there. When I was going through this I found that putting my feet up on a little step stool while sitting on the toilet helped me empty better. Does your surgeon have you coming back soon for a follow up? [ more ]
GB2014 I can't really say what the norm is, I think everyone is different. I was going about 10 times a day after the op and it went down to 6-7 after a week and after a month about 5-6 times. 15 times does seem high but it is still very early days. What you call "a friendly push" could be regarded as "straining" which is to be avoided as that would make matters worse. I think you have to be patient and give it a bit longer and hopefully things will improve. Best wishes [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Recent takedown nightmare. Pls help :(
*Zoe***Zoe**
Jpouch Thanks for the update Zoe! I wish all the best to you! [ more ]
Ljz Zoe, I'm in US, Chicago but my surgeon was at Cleveland Clinic until recently. Get strong! I do believe that temp ileo will allow you to do that! Take it slow and wishing you good health and hopefully successful pouch in the future! laurie [ more ]
*Zoe** Hi All, thanks for those that have posted recently. I thought I would let you all know that I'm back with a temp ileo, I couldn't go on like I was any more. The surgery was just over two weeks ago and I'm starting to feel human again. I'm still down that things didn't work out the way I hoped but family and friends have helped me through this. crazy1 - thanks so much for the tips on diet. I am finding it easier to eat now and will takes this on board. laurie - thanks for your post. I hope... [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Post-Operative Diagnosis?
C Cez
Bobish Technically you can't have colitis without a colon and the doctors consider total collectomy a cure for colitis! You will no longer need to take asacol or pentasa because you are 'cured'. That said, you now have a condition caused by colitis so sure your fine to label it as colitis and get discounted water [ more ]
JUSTCANTLOSE To clarify the top... If u have a jpouch u STILL have uc... If they cut all the tissue out that has UC there would be no were to connect u back together.. JUSTCANTLOSE [ more ]
Kara Fred CEZ- I had UC and my diagnosis since my colectomy and subsequent surgeries has been UC, UC with complications, attention to ileostomy and ileostomy dysfunction. For me, my healthcare providers continued to distinguish if my issues were of the small bowel or large bowel. I don't believe you 'lose' the UC diagnosis due to potential complications or even no complications. Appears you are on the right path to confirm with your GI however as I can only tell you my experience. All the best, Kara [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Pouchitis and Diphenoxylate
A Allin
Scott F The headache with Lomotil might be from the atropine. It might be worth trying Imodium instead. [ more ]
jeane Does anyone get severe headaches from lomotil? My stomach was killing me from Cipro so I stopped on my own. I am now taking 8 turmeric capsules a day and 4 packets of vsl3 ds. This is the first time in weeks, my stomach has not ached 24/7 and I have not been in the bathroom every hour with God awful cramps and pain and horrible sounding stomach noises. I have also started a gluten free diet and I am watching alcohol intake and carbs and sugars. [ more ]
Rebe0505 i rotate antibiotics a month on each one and with phylum husk i am doing better than i ever was.. [ more ]
See all 12 replies...
J-Pouch ForumsPouchitis
update on past year/had pouchitis since surgery 06...
R Rebe0505
Terradon Just as an offering of something that finally worked for me, the best probiotics that I have used are Dr. O'hhirra's probiotics. I managed to finally transition OFF of anti-biotics both times with his formulas. There is a regular strength and a "Professional strength" I would start with the regular and then move up to the professional. When having pouchitis, I avoid all dairy, gluten and then take these 3 times a day. When off or pouchitis, I still avoid dairy and gluten and take 1 a day. [ more ]
See 1 reply...

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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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