rosevioletThank you, Jan. Very informative info and very kind of you to post it. -- Rose -- [ more ]
jan15SeattleJane--you are welcome and glad you appreciate the info. Columbia's home page: https://columbiasurgery.org/colorectal when I get additional info I always post it in general news and specific k-pouch news under a topic in our korner. stay well! jan [ more ]
Scott FI wonder if your pelvic floor needs a refresher? Was there active manipulation or just exercises you came home with? Are you taking the psyllium with a full 8 oz. of water and around mealtime? Have you tried the basics to reduce gas (no carbonated beverages, eating slower to swallow less air, etc.)? Your sore anus could just be from high frequency/straining, or it could be something else. [ more ]
WinterberryAsk your doctor to test you for HYPER thyroid. For years and years I was unable to tolerate warm weather above 72F. It would make me ill. Turns out I am hyperthyroid and probably was for years. At least now I know why I’m intolerant of any heat and know how to look after myself in summer. Good luck. [ more ]
Len78They make zero sugar Gatorade but the potassium is 300 plus in the 32 oz bottle and 160 Mg of sodium I don’t really do Gatorade maybe for my bowel prep as we lose water and nutrients in though stool like sodium and potassium esp when things are loose concerning sodium loss len [ more ]
Len78Hello. as someone with type 2 diabetes I walk to maintain sugar levels throughout the day and I’m On a daily pill of tradjenta 5 mg . my sugars run between 110 to 140 sometimes depending on foods. if you try to walk everyday or most days it helps with blood sugar control but it takes some motivation i enjoy eating too we have previously struggled with weight I’m 5 feet5 and 170 pounds all the best to you len [ more ]
New577hello, Similar to the experience of the poster above; I had severe pain/burning 24/7 for my first 6 months. Finally, in desperation, I stopped all medicines for 48 hours and started adding them back one at a time until I found the culprit. It was an extended release bladder drug that was absolutely wrecking my pouch function and QOL. You might need to do some detective work to narrow down the cause of these issues. This presumes of course, that your issue is not mechanical or some other... [ more ]
KerrymareeeI have a jpouch going on a year now. I also had burning and it was making me crazy. I decided to go through my meds and remove one at a time for a few days to see if there was a connection. I discovered that the magnesium I was taking daily was the problem! I think the potassium also has an effect. These were recommended by my doctor. But I stopped taking them and feel much better. I still get burning on occasion probably because of what I eat and drink. Crohns diagnosed 2010 Complete... [ more ]
Scott FIs there any connection between the burning sensation and defecating? Does it hurt all the time, or with some other frequency? Does anything make it better (or worse)? Is the pain sharp or dull? [ more ]
Ronda from OregonHi there I have collagenous and lymphocytic colitis it changes every other annual biopsy. 2009 total colectomy then short gut syndrome with ileo ostomy, jpouch and worse short gut..... Banatrol has helped some..... Would like to connect. [ more ]
Scott FMost people seem to get noticeable symptom improvement after a few days, particularly with Cipro. If I were getting no benefit after 7 or 8 days I might put in a call to my doctor to discuss trying a different antibiotic. A single antibiotic not working doesn’t tell you much - it can still be pouchitis, and a different antibiotic or combination might work fine. [ more ]
New577The several times my GI put me on Cipro were always for a minimum of 14 days. [ more ]
PouchLogicI don't stop after 3 days, I'd probably try for a 2 week minimum and I usually stay on for 1 months. I have been able to only go on antibiotics for 2 weeks and have it resolved but sometimes it's not long enough and I end up on them again. [ more ]
R-JP4LifeIt has helped tremendously with PF pain and painful urination and I believe or am being positive about fecal incontinence. I did close to 2 years of research before I was even brave enough to start the journey. I really believe my train left the rails because of my PT’s lack of experience not lack of effort. I just setup a re-evaluation with another person and after the phone call it sounds really good. My lesson learned is it’s no different than anything else. I began to question in January... [ more ]
Sara MarieI'm following because I'm also curious about pelvic floor therapy. I haven't had it but am considering it. [ more ]
R-JP4LifePelvic Floor Dysfunction. While I am dealing with one issue I am not happy about, the pain you describe is exactly the same. If so it may be the Pudenal nerve. My pain was constant since 1995. I just learned to live with it but due to fecal incontinence I ended up in PF Physical Therapy. BUT, be sure its a PT who has experience with your plumbing. It did bring relief for me. [ more ]
New577I can tell you that after my colectomy two years ago, but before takedown my testicles swelled everyday. I went for an ultrasound of testicles and I had a hydrocele of the right testicle. It took a number of weeks to resolve and I am still careful today not to aggravate it. so pain/nerve damage would be fairly common after colectomy. However, I would think that they are not in your pelvis during takedown. so am I thinking like Scott, that maybe you have an irritable pouch situation. I suffer... [ more ]
JaypeaWater retention doesn't generally happen in your stomach. Do you mean you feel bloated? Could be from the GI symptoms causing gas build up or perhaps the GI symptoms are pointing towards a partial obstruction? Water retention generally happens in dependant tissues (ankles, feet, legs) causing swelling. [ more ]
Scott FIt can indicate pouchitis, just like the doctor said. When I first developed pouchitis it came on gradually, so there was a significant delay before it was looked at. The pouchoscopy looked like a minefield of erosions. [ more ]
xwatericeI was told the same. Compared to the previous surgeries this should have been the easiest one… which is true medically wise, but it was the biggest lie ever psychologically?! It’s not a matter of quantity of bowel movements and I know I was terribly lucky at the very start too. It’s the whole changing your life thing to me- 6 years without feeling anything down there, forgetting what an urge even was even, have been and still are devastating. I’ve been trying to be positive since day 1 but... [ more ]
New577Keep the positive attitude and stay involved here. You will continue to learn and with time, you will be able to manage the pouch. you are not alone in your thinking. I was told how everything was going to be ok with this surgery, but if not for this web site, I would be lost. Almost everything I’ve learned has been from here. Yes I need my docs to manage my ongoing medical issues, but they just don’t know how to manage the daily challenges we all face. [ more ]
xwatericeThanks so much guys! As always your replies are precious. I tried taking 3 Imodium tonight (sublingual) and despite having eaten veeery late I managed to sleep for 5 and a half hours straight; when I woke up the urge wasn’t even that bad, I could have gone back to sleep without a bathroom trip. I’m afraid they do not sell Lomotil here where I live, Italy… But I will surely mention it when I meet my GI! Metamucil: I’ll give it another try, maybe before a *big* meal and see what happens. The... [ more ]
KushamiI’ve spoken to two doctors and a nurse, and it is known that it is a medication side effect. (The medication I tried causes GI upset in everyone who takes it, colon or no colon.) They and I are 100% sure it isn’t pouchitis or anything else specific to the pouch. It’s just a very unhappy bowel, as anyone’s bowel would be after gastro etc. :-( I think low residue is helping. The doctors and nurse say to “wait it out”, but I just thought folks here might have some insider tips. I didn’t need... [ more ]
PouchLogicIf this is still ongoing you should be seen by a Dr. It could be pouchitis, it could be a part of your bowel is hung up on some scar tissue or any other number of things. Otherwise it sounds like you did what I would do in your case. Hopefully it has gotten better or you have gone to see a doctor. Good luck [ more ]
LeelooWhat about steel cut oatmeal and quinoa? I have a similar diet tolerance & I’m vegetarian. Also white mountain Bulgarian yogurt from Whole Foods? Check with your doctor, I don’t really know if 5 g of sugar/cup in that one is ok. I worry about becoming diabetic. How old are you? What were your symptoms? [ more ]
KushamiHave you tried anything that might allow you to eat a wider range of foods, such as Metamucil? Also, with the foods you listed as your mainstays, are you vegetarian? The reason I ask is that lowering carbohydrate and increasing protein can be a good strategy (obviously depending on your doctor’s advice). But increasing protein can be take a bit of thought for vegetarian j-pouchers that have to avoid legumes. I eat a wider range of foods than you, although still avoiding high insoluble fiber... [ more ]
AimcBubba, you didn't say exactly where the pain is, but could it be gallbladder? It's usually upper center to right sides of abdomen. Causes gas . Many of the same symptoms we have with everything else. The pain is like someone ctting with a knife. I use a heating pad. It helps but takes a bit of time. I'm just not wanting another surgery, even though that is probably going to happen. Anyway, just a thought. Hope you get some answers. Aimee [ more ]
Bubba1028My takedown was in 2017, so I’m going on 6 years lost takedown. I think it was a partial obstruction or gas behind an adhesion. I know I have adhesions and my doc noted one in particular when he did a scope that caused almost a 90 degree hook in my small intestine, and it’s caused problems before. i bet that’s it. It was a lot better today, so glad. I was about to take some of my leftover narcotics! Thanks for listening ya’ll! [ more ]
New577I have been on dutasteride (avodart) for the last two years. If is very similar to finasteride (proscar). It has dropped my PSA from 10.4 to 4.5 and shrunk my prostate volume from 70+ cc’s to about 50. Mr. Pouch tolerates the drug very well. [ more ]
Jess623https://www.crcorlando.com I just moved to FL and my surgeon from Denver recommended this group. [ more ]
ljh824Dr John Monson. Straight shooter. Saved my life. [ more ]
PouchomarxI am in Ohio and Dr Remzi did my redo here. but my sister who has Crohns in Orlando, needed a resection and Dr Remzi personally called him to get my sister in for surgery. I am not sure if he does Jpouches but i know hes a great colorectal surgeon that is a colleague of Remzi . Justin Kelly, MD | Colon and Rectal Surgery | Tavares, FL | AdventHealth [ more ]
AllyKatOmg I’m so sorry. I guess anything can happen. no you read this right. I guess you can have a resection for many things. Mine will be to reduce the loop that’s twisting and making me miserable. My surgeon said I will not need a ostomy. One never knows. So glad you’re better. [ more ]
New577If I am interpreting this question incorrectly please forgive me, I think I had a resection when my first takedown missed an enterocutaneous fistula. 10 days later it leaked and I had emergency surgery. As I was being wheeled in, my surgeon warned me that it could be open (it wasn’t), and that I could wake up to a permanent end oestomy. Even though I was septic, he took a chance with the resection and I woke up two days later (was on a ventilator) with a redone anastomoses. That was 22... [ more ]
KushamiJust wanted to mention an underdiagnosed cause of dry eyes – Sjogren’s syndrome. It is estimated that one in ten people with dry eyes in the US have it, so if you are over 40 it is worth discussing with your doctor. [ more ]
rosevioletIf you are trying for effective oral rehydration solutions, Google "St. Marks Oral Rehydration Solution." You can inexpensively make a liter or two to leave on your counter or bring with you to work in a water bottle to sip throughout the day. This has the requisite salt, sodium bicarbonate, glucose/sugar needed to absorb electrolytes along with water. (one of the ORS also adds No Salt/Morton's Lite Salt, which contains potassium as well.) It can be flavored with lemon, Crystal Light... [ more ]
Scott FIf the pain has been the same since the pouch was created 10 years ago, and persists even though the pouch isn’t being used (you wrote that you have a loop ileostomy), then it’s reasonable to believe that the pain may be related to the construction of the pouch (this could include adhesions that developed when the pouch was made). What does your surgeon (or gastroenterologist) say? [ more ]
Mr AThanks for your reply Scott had 3 stage pouch created about 10 years ago Defunctioned within a year i had pain right from when pouch was done Have loop ileos its been the same from when pouch was done what I feel is like a stretching pain the stretching in the pelvic area is always there I’ve just had enough can it been pain from where the pouch was stitched together [ more ]
Scott FPeople can have pain anywhere. How long ago was the pouch created? Is it currently in use, or is there a loop ileostomy? How long after pouch creation did the pain start, and how long has it been going on? Is it getting worse, getting better, or staying the same? [ more ]
BK 123Associated Colon and Rectal Surgeons - Bertram Chinn's group in Union County NJ. Mine was done with Dr. Suraj Alva who is a part of his group. [ more ]
AMBRavi Kiran. He was at the Cleveland Clinic & is now at Columbia. He's an expert at k-Pouch construction as well as J-Pouch & revisions. I was referred to him by another Cleveland Clinic alum. I also considered Dr. Hull. I've seen her lecture a few times and she is impressive. I had a great 2- part surgery with Dr. Kiran. One of the many benefits of Columbia is that when I started with floppy pouch issues, I was quickly set up under the care of Dr Shen. [ more ]
KushamiJust in case anyone looks this up in future, I advise caution with this medication (or similar, e.g. miglitol). I had a bad reaction to it and ended up being unwell for several days. It took a me over a week to recover from a single day’s dosages. If you do try this class of drug, take one dose with one meal and then wait 48 hours to see whether you tolerate it. Probably best to take half or quarter of the recommended dose too. If you tolerate it, well and good, you can gradually increase up... [ more ]
KushamiGood point, Scott F. I think I will try it very carefully. [ more ]
Scott FSome drugs that can cause diarrhea do so through an effect on the colon. In those instances we would surprisingly be spared that side effect, though it would be very difficult to predict when this would be most likely to happen. [ more ]
Scott FI didn't misunderstand your post. There are places in the body that require significant biological control of anything introduced, like a sinus rinse. The pouch doesn't require that, nor does it require an osmotically balanced enema. [ more ]
OscarThePouchI think everybody misunderstood why i mentioned the sinus rinse. I was not asking any questions about sinus rinsing. I was merely suggesting that the salt packets that come with those kits may be usable in an enema if you want to make your own saline. I'm aware of the brain amoeba stories but it isn't relevant to this discussion. Not sure how my words got misunderstood as I think I typed them pretty clearly. Maybe everybody was reading too fast. [ more ]
CTBarristerHere is a news report on the latest "catastrophe" on using tap water for a sinus rinse: https://www.npr.org/2023/03/03...-brain-eating-amoeba [ more ]
JaydogI truly don't think it has anything to do with lifting. I was in the gym this morning doing pretty heavy squats with no issues at all. It's only when I cough or push when using the bathroom that it pops out. At any rate I'm scheduled for surgery in May 3. [ more ]
Pouchomarxmy guess is weightlifting was weakening the area over time from all the pressure and finally gave way from pushing.. I got a small one at my iliostomy site a few months after takedown carrying a case of beer for a long walk.. had it fixed [ more ]
Pouchomarxits been pretty good for the most part.. since the surgery i have very minor intermittent leakage though so always use Ilex and a small pad just in case.. I was told that for a redo there is risk of this due to handstitching instead of stapling for redos and the mucousectomy.. but it was a redo or permanent bag so i will deal with it as its not too bad. [ more ]
Pouchomarxi was told the same, a few more months. I tried another product that specifically said "compared to Ilex" and it was a soupy white cream that never dried like Ilex. I like Ilex cuz it dries and i can tell when i leak which is small and intermittent but anything else i cant tell if its the cream or if its me leaking. still fighting with company to get my refund.. [ more ]
Jfill21Vickie, I agree. I have found nothing else that works as well for me. [ more ]
Jfill21Go to the US website for iLex: https://www.ilexhealthproductsusa.com/ [ more ]
Pouchomarxit definately helps with visceral fat which is the dangerous fat around the organs. That is dangerous for the jpouch especially.. [ more ]
MysticobraI do appreciate all the ideas. Motivation is my problem. I'm just lazy I woukd hope the original poster has gotten some ideas. There are plenty here. Just hope Poucho has motivation. If he has that. He's got it made. R. [ more ]
Pouchomarxi was having one a few times with DR Shen, but ended up having other issue as well so ended up with a redo with Remzi [ more ]
OscarThePouch@Pouch2021 Oops forgot to say that I am glad you're hanging in there and I wish continued healing for you! [ more ]
OscarThePouchThey opted not to operate on it yet. (For anyone who cares, here's the original story - I put it in Pouchitis because that's what they originally thought it was: https://www.j-pouch.org/topic/...symptom-what-is-this ) The imaging for some reason makes it hard to tell if it is a sinus or a fistula but either way it is a tract. It's about 3 cm to the back of my pouch and goes down to my coccyx ... i think it's like 4.5 cm long? I'm not a radiologist so maybe I'm wrong. The doctor thinks that... [ more ]
SnowDogTry putting the seat up and sitting directly on the porcelain. With a little practice you can kinda create a seal and block a huge amount of the noise. At the pro level, you flush right when you release and that takes out most of the smell too. I saw this suggested here years ago and it really changed things for me, good luck [ more ]
KushamiG’day Jim, For hydration, have you tried oral rehydration salts? There is a “bare bones” product available in the US called TriOral that might help. One sachet between mealtimes (so not close to eating) could help. Also, just in case, have you had your symptoms of dryness checked by your doctor? It is possible that this has another cause, such as Sjogren’s syndrome. My j-pouch is also noisy. Sarah in Australia [ more ]
Deb CI ofren do a "courtesy" flush just at splashdown so odor source is removed as quickly as possible, then flush again after wiping. [ more ]
AMBJust read an NYT article about a study linking gut microbiome with chronic fatigue syndrome and wondered how these factors may impact those of us with pouches and our own unique stool bacteria issues. "In a study published in Microbiome , researchers recruited 48 people with C.F.S. and 39 healthy controls. Then they analyzed the quantity and variety of bacteria species in their stool. They also searched for markers of inflammation in their blood. The stool samples of those with C.F.S. had... [ more ]
athenaAli: I hate the bitterness of potassium and magnesium supplements also. But they are hidden nicely by a sachet of preportioned drink mix, the kind that comes in a little tube you empty into a bottle of water. I use one of those in a liter with a packet of electrolyte mix and it makes it much more palatable… hope that helps. The bottle kind where you add drops of flavoring also works. Here we have flavors like strawberry or raspberry lemonade as options. Low sugar versions are readily... [ more ]
Deb CI read somewhere years ago when I was diagnosed with B-12 defficiency that taking vitamin supplements can trick the blood tests for b-12 defficiency to show up normal. [ more ]
New577My SIBO was best described as having BMs and gas that smelled liked horse manure. Even Gasx could not control it. It was that nasty.😲 i still have food intolerances and IPS just like the good old days pre UC when I had IBS. Spicy food and too many nuts can really send Mr. Pouch into a hissy fit and make me crazy for about 36 hours. [ more ]
FredzWhat kind of symptoms did you see improve? Did bloating and food intolerances get better? [ more ]
New577Yes doing good thank you. I have not had any additional SIBO episodes or UTIs. but I am taking 4 Imodium per day, which seems to keep everything in order. [ more ]
New577I kinda go thru this periodically. in the beginning , I was pushing so hard I re-aggravated an old inguinal hernia repair. I also find that too much Imodium can cause too firm of a stool. I find that the consistency of pudding or porridge is just right and the pouch will drain fine. I think my whole pelvic floor was messed up. The Gi did suggest pelvic floor therapy, but by the time I could clear the wait list, my pelvic function recovered enough that Mr Pouch empties fine most days. [ more ]
Deb CI'm female so this will only partially apply to you. I got my pouch 20 years ago and have never been able to empty well no matter how I push. The surgeon has never come up with an explanation for it. They had me do an enema, then insert a tube for stool to drain out through. This worked, but what an inconvenience! Finally an ENT nurse suggested I had a recticele. Being female, I can press inside my vagina to empty. It still sometimes takes considerable effort though. At bedtime I still do... [ more ]
AMBType of roast, grind size and brew method time all impact acidity of coffee. Cold brew is said to be best. For hot coffee, dark roast coffee, larger grind and fast extraction (French press perhaps. Or experiment with pour over) should be less acidic. And acid can be neutralized. I read somewhere that you can add baking soda. That does not appeal to me, but almond milk will neutralize acid in coffee also. [ more ]
FredzThank you so much! Mine bulges out a tiny bit if I like lean backwards and try to push the area out, but it’s very hard. So I assume the doctors were right saying it was scar tissue but you never know. I will try doing some massage! [ more ]
Bubba1028I had a hernia when I was pregnant but they weren’t able to do a scan bc of obvious risks to the baby. They confirmed it with an ultra sound. It bulged every time I pushed out my stomach too so it looked weird. My sister in law is an athletic trainer and has since done a lot of work with muscle massage after surgery. She worked with my other sister in law after her c-section to loosen up the scar tissue. I’m not sure how effective, clinically it is, but both said it was helpful. [ more ]
FredzSounds smart, thank you! Appreciate it! [ more ]
FredzVery happy to hear that! I have tried many things for my sibo ( all though my health issues probably are complex and have other root causes as well), but I am going to give Augmentin a go. Please come back here and leave a comment if you find anything that works for you, I am sure this will not be the last time someone with a jpouch could use this info! [ more ]
SeattleJaneHaving been just diagnosed with SIBO, this is a super useful post, thank you. [ more ]
FredzI have not tried it, maybe that’s next if Augmentin fail. The reason I am being put on Augmemtin is due to hydrogen sulfide sibo, so I don’t only react to high foodmap foods but also to beef meat and sulfur foods. So Augmentin is supposed to be good for that. I guess everyone reacts differently and what works is all dependent on what bacteria is overgrowing. Don’t think it’s one antibiotic for all, but good to know I have options. I read many on the fb who do well on Augmentin so that’s good... [ more ]
SeattleJaneGreat stories, great information. Thank you for posting. And yes, I also wish I lived closer to the Cleveland Clinic! [ more ]
KushamiIf I win Tattslotto, I might ask him to come to Australia and hold a masterclass for our surgeons here. They don’t do nearly as many j-pouches per year as surgeons in other countries and seem a bit reluctant to tackle the types of revisions and redos that are common in the US. [ more ]
SeattleJaneI don't know if it counts as "fasting", but I have been NPO for long stretches of time when I have a small bowel obstruction. If I don't have an IV going for fluid, which I didn't during the initial Covid outbreak when it was too dangerous to be in a hospital, I would sip super small amounts of clear liquid. No way could I dry fast. Liquid is the only thing that keeps me going. Clear water, broth and jello keeps me somewhat hydrated, an absolute necessity for organ and brain function. [ more ]
Scott FThe evidence for the benefits of fasting is meager for people with colons, though the proponents of it exhibit serious religious fervor, and some of them write “books,” too. The risks of dry fasting for people without colons should be obvious. If you put yourself into kidney failure then then you can take some small comfort from living in an era when dialysis machines have been invented. My kidneys have proven remarkably resistant to the power of prayer. [ more ]
FredzI thought so too, but dry fasting is much easier and allegedly has a lot more benefits. Google Sergey Filonov, russian doctor who is the leading expert on the field. You can get his book for free online. [ more ]
MirsiHi Maria. How have you fared after your gallbladder removal? I'm in a similar situation. Meeting with the surgeon next week. Thanks! [ more ]
skn69I had mine out about 5 yrs ago...no problem at all... as for losing weight? No such luck! I haven't changed my diet much. And certainly not for the better. My pouch function hasn't changed either. Sharon [ more ]
SteveGI would not associate bright yellowish stool with bile. It may even be a lack of bile, a cholestasis. Or a dysbiosis or bacterial infection, which has been fixed by taking a probiotic. [ more ]
DarlinHi Scott , A few weeks ago it started. Going bright yellow at every emptying was concerning. There had been no change in diet or anything else. After I posting the note, I went to the pharmacy and purchased the probiotic called Florastor. It seemed to stop the bile very fast. Do not know why it happened but would like to find out what happened to cause this so I may avoided it from happening again. [ more ]
Scott FHow long ago did it start? Do you have any other symptoms? What about it makes it seem like bile? Are you staying hydrated? Are you eating? [ more ]
JaypeaInterestingly hot flashes also occur with re-feeding phenomenon. If you have been malnourished for a time and your body is getting back to normal your metabolism goes a bit bananas and will often "rev"up at the most inappropriate times. [ more ]
AMBGood points - association and causation are two entirely different animals. Still, my uneducated hunch - at least for me - is there is some relation to removal of the colon and reconfiguration of the small intestine. If ever I do get worked up by an endocrinologist, I'll report back. [ more ]
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.
Forum moderator and advisor Jan Dollar R.N.
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