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J-Pouch ForumsGeneral Discussion
Any Nurses - Blood Test Result Questions
J JessGoguen
Jan Dollar Gallstones can be a cause of pancreatitis, as stones can block the common duct. But if you had a stone in a duct, you'd be way sicker than you are, and your labs would be much higher. More likely inflamed ducts from chronic gallbladder "sludge." The MRI should sort this out. Glad you are finally on the right path to finding the source of your problems. Chronic pancreatitis is more insidious, so more tricky to nail down. Jan [ more ]
JessGoguen Thanks Jan, Confirmed by doc that it's definetly some inflammation in the pancreas. GI is scheduling an MRI. I have been having upper abdominal issued for the last 10 months. Everything point to gallbladder and my upper abdo pain has always been deemed gastritis. Hopefully we figure it out because eating sucks and sleeping isn't any better. [ more ]
Jan Dollar Could be a mild case of pancreatitis. That would explain why Prilosec did nothing for you. These numbers are not that elevated, and that may be why your doctor did not have pancreatitis on his mind at first. However, the fact that he did test for pancreatic enzymes means he had an inkling... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Question about a scope
J JHendrix
JHendrix Thanks for these responses. It is clear that since I have no (well other than the ongoing wondering if things are normal) issues and did not have dyplasia,it is reassuring that a scope would not be done until one year post op. It just seemed like people were getting scoped sooner and more frequently. I am grateful I don't require more. thanks. [ more ]
CTBarrister I have it done annually due to chronic pouchitis in the pouch and dysplasia in the colon when it was removed. One or the other being present in your history should dictate a regular annual or biannual schedule. However, if no pouchitis is present and you did not have dysplasia at the time of colectomy, it does not need to be done once every one or 2 years. [ more ]
Dog I'm supposed to get one every 2 years, but my medical plan has a $5000 deductible so I can't afford to have it done. Curious that a pouch scope is not on the same level as a colonscopy, which is covered 100% with no copay (I think) as mandated by law. [ more ]
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J-Pouch ForumsGeneral Discussion
Where to stay when going to the Cleveland Clinic
marriedguymarriedguy
vstRN Doubletree Tudor Arms Hotel. It's very close to the clinic and from what I remember, I think they give a Cleveland Clinic rate. [ more ]
Lambiepie The InterContinental Hotel and Conference Center is where I booked a room for two nights (but cancelled, but that's neither here nor there): 216-707-4100 or 877-707-8999. They have a concierge service for options regarding getting around: 216-707-4194. They're all very accommodating. [ more ]
Dort If you go to the Cleveland Clinic site they have information on lodging. Unless of course you are looking for recommendations. Good luck with your appointment. http://my.clevelandclinic.org/...spx?filterId=Lodging [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach Bug Advice!!!
RL Rev Lenny
CTBarrister Speaking of which, I am sick right now (common cold I think as I got the flu shot) and made chicken soup in the crockpot, and salted it up pretty good. I cooked it for 18 hours - chicken breasts, onions, carrots, celery, parsnips, turnips and zucchini. At the end of the 18 hour cooking process I was left with a very rich and intensely flavorful broth. The beauty of cooking chicken soup in a crockpot or slow cooker is that the soup is not "boiled down", and therefore broth is not wasted. [ more ]
CTBarrister I totally agree, if it is a stomach bug the last thing you want to use is loperamide as all it will do is prolong the agony instead of allowing your body to rid itself of the toxins through the natural processes of diarrhea and vomiting. This is how your body naturally expels things it does not want inside, so why counteract those processes? As I mentioned in another thread I recently got sickened from eating steak tartare and felt intense nausea for a period of time, dry heaves and then... [ more ]
Jan Dollar Yep, especially if this is bacterial rather than viral, bowel slowers prolong the illness and intensify the gut damage. But, if you are pretty sure this is the common norovirus, then bowel slowers are OK, since there isn't the toxin release you get with C. diff. Salty broths are better than plain water, if you can tolerate them, or non-sugary hydration drinks, like Pedialyte. But, realistically, if you are so weak you are nearly passing out, you need IV fluids. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How long does immodium stay in the blood?
I iHateColitis
Shainy interesting topic I currently have a loop ileostomy (in between stages 2 and 3) so have quite a lot of output. quite often I won't take any immodium, I do empty the bag fairly often, but I eat and drink absolutely everything, including coffees etc. I am very active, do a lot of running and boxing so I think I would feel it if I was dehydrated but I seem to be fine. however sometimes the output gets too liquid so I usually take one immodium a day and that thickens things up a lot. to the... [ more ]
Jan Dollar Yes, if you have developed dependence, and stop suddenly your gut symptoms may return (not a given, but may, especially if you really still need the drug), plus you can get other withdrawal symptoms typical of opiate withdrawal, like anxiety, aggitation and sweating. But, I would expect this only after high dose, long term use. Hence the reason for tapering. Better than just toughing it out, in my opinion. When I was taking more than one a day, I would tKe it when it was convenient for me,... [ more ]
iHateColitis Jan, Thanks. So by dependence vs. tolerance, you mean that if I abruptly stop, it will be difficult initially, but it will adjust back? Also, how do you usually spread yours out? [ more ]
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J-Pouch ForumsGeneral Discussion
Fecal Incontinence worsening in the winter?
S struggling
struggling I haven't tried fiber wafers per se, though I have tried other thickening methods like psyllium husk powder. Lately I noticed that even when things are thicker I still have major incontinence issues at night. [ more ]
marriedguy There are many things you are likely able to help control things with, but have you tried fiber wafers? Wondering if maybe there use may thicken things up enough that fecal incontenence may not be as much of an issue. May be worth a try (if you haven't already tried this route) as a first defense as it doesn't require any sort of drug or lifestyle change. [ more ]
rachelraven I've had more problems, though minor, with pouch issues around the holidays and colder weather because I eat differently, and believe the increase in holiday festivities and especially increased sugars are the culprit. Much better when I tone it down. [ more ]
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J-Pouch ForumsGeneral Discussion
Sickness leading to severe dehydration
marriedguymarriedguy
Jan Dollar It sure sounds like some sort of seasonal allergy thing, unless you habitually eat the same tainted seasonal food this time of year. You'd think your local docs could pin this down, but yeah, if you can, try to see Dr. Dhen, since he's seen more troubled pouches than anyone. Reminds me of my brother who used to get laryngitis every Halloween. Yep, seasonal allergies that morphed into bacterial infections. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Moon Juice
L LisaT
Jan Dollar Everything I have read indicates that there really is no such thing as a toxins cleanse. Your body naturally detoxifies constantly and you don't need a special product to do it. Everyone wants some magic/miracle food, but there just is no such thing. That said, these product seem safe and OK to drink, but I am not sure why they'd be better than whole, fresh food. I looked at the website. These are NOT colon cleanse products (like the much maligned colonic irrigations), so that makes me... [ more ]
Scott F All of these things seem like potential trouble without a colon, but I'll admit I'm not a fan even for the coloned. [ more ]
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J-Pouch ForumsGeneral Discussion
Peeing too much?
skn69skn69
Jan Dollar First, get the diagnosis before you get too worked up about it. But, basically, it is about having portion control, and vegetables comprising half of your plate (protein and carbs each taking a quarter). http://www.diabetes.org/food-a...-a-healthy-diet.html Once you cross over to diabetes from prediabetes, it is always your diagnosis, even if you don't need medication. I lost weight and maintain my normal HbA1c by diet and exercise for the past 4 years, but I am still diabetic. Jan [ more ]
skn69 What was their advice, diet-wise, in the begining Jan? I am doing my six small snacks a day thing (or as close to it as possible), cut out about 85% of the sugar, breads etc and am not touching white flour (the occasional multi grain) and divide my intake between apples, veggies, nuts, light proteins and fruits. Tons of water though... Can you 'get back' from this once you are at the edge? I am 10lbs 'overweight' and walk about 1hr/day plus all the other activities. Not sure what else I can... [ more ]
Jan Dollar Both my husband and I have type 2 diabetes. His is more advanced than mine, but neither of us require insulin (yet). I am diet controlled and he takes multiple oral meds. A lot has changed in the past few decades. They are much more aggressive in diagnosing and treating now. There is no such thing as borderline any more (just prediabetes and diabetes). It is an autoimmune disease, not just a lifestyle disease. You can have thyroid dysfunction with it, but they are separate problems. It is... [ more ]
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J-Pouch ForumsGeneral Discussion
My latest UC theory-Call it part X
Old Mike,Glenns DadOld Mike,Glenns Dad
Goody2shoes This might help - http://www.livestrong.com/arti...in-resistant-starch/ or google foods high in resistant starch [ more ]
Ljz What are Resistant Starches? In foods or separate food? [ more ]
_Dan_ I'm replying to this old post because its the only one on the forum I can find that mentions Resistant Starch. Although you suggest that the information may save a colon, it may have just saved a pouch. I have been taking resistant starch for the past 3 weeks and the results are pretty remarkable. I've not had calprotectin results back yet but it is obvious the benefits this one small dietary change has made. Coupled with psyllium powder my output has never been as good. Digestion is clearly... [ more ]
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J-Pouch ForumsGeneral Discussion
Needing To Hear from other Old Timers
M MissTiff
CTBarrister I also got my J Pouch done at Mount Sinai Medical Center in NYC in 1992, same day as KangaRoe and by the same 2 surgeons. If I recall correctly my step 2 was done the same day as her step 1. My issues in these 22 years have been a little different - chronic pouchitis for 20 years treatable with rotating antibiotics. I have remained fairly consistent in my responsiveness to antibiotic treatment with the exception of a 2 year period 2011-2012 when my diet was poorly controlled. I had similar... [ more ]
KangaRoe I got my pouch in 1992 also. I was having trouble like yours in 2008. I had narrowing/strictures of both the inflow and outflow areas of the pouch. I needed a test called a "retrograde j-pouch study" to find out what was going on. It is a test where they put liquid up your rectum into the pouch and a little beyond and take x-rays to check the functioning of the entire pouch. I myself had to go to Mount Sinai in NYC (a very big medical facility) where they are experts in people with Crohn's,... [ more ]
Fosty It's a simple procedure. Just small tubes that you can insert with a syringe of water. You need to lubricate the tube first then insert. It empties the pouch quite well. I was having narrowing issues and unable to empty sometimes. My surgeon who is new to me as my old one moved on was ready to reverse the pouch! She consulted with my old doc who suggested irrigation first. Thank goodness! [ more ]
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J-Pouch ForumsGeneral Discussion
Numbness at incision site
lholdemlholdem
skn69 CT, Please don't test your theory! Sharon [ more ]
CTBarrister What is completely dead to the touch for me is the area where the stoma was. This area was allowed to heal by the granulation method, rather than stitched, as my surgeon believed that sutures needlessly exposed me to infections. What I have there now is a big oval shaped scar, which has no sensation at all. There are no nerves or anything there. Just a big mass of scar tissue. I suspect that if I was stabbed through that area, I would not feel anything. [ more ]
Spooky This is not at all unusual. Don't forget, your skin, muscle tissue, and nerves were all cut during surgery. I still have a small patch of numbness/reduced sensation at the old stoma site. It was much more pronounced in the immediate aftermath of surgery; it gradually improved but I still have reduced sensation on and right beside the scar (i.e. the area between the stoma site and my central incision line, and on the stoma scar itself. I would estimate the affected area is less than 1 square... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic cant get glue ??? lol
PouchomarxPouchomarx
Pouchomarx GOOD LUCK, I THINK MINE HAS RUN OUT, WE WILL SEE..ALTHOUGH I HAVE NOT HAD LUCK SINCE DAY 1. [ more ]
dtmack Poucho, Full open again. My pouch had expanded a bit, making the removal of the tip much easier. He fully stapled and stitched the tip together, took down my complex fistula , and put me back together. I told him prior to surgery if he did not feel 90% certain the repair/revision would work, remove it. If a new pouch could be put in, do it. If not, permanent ostomy. I am almost 3 weeks out and just waiting to see what happens. Very nervous. Can't let myself get to hopeful because i do not... [ more ]
Pouchomarx dtmack, what kind of revision repair did you have? Shen tried the new endo stitch but failed cuz not flexible enough to get where it needed to go. ended up having surgery and surgeon stitched off the tip of jpouch a few inches below the hole. 6 weeks later went in to shen for my sinus procedure and stated my hole was still there, even after surgery. My intestinal tissue is just weak and it didnt hold. I hate this ostomy bag more than anything but i refuse to have surgery to get the redo. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch changes
rachelravenrachelraven
rachelraven Yes, we know there could be, and I've had dilations for that. On treatment now, things are WAAAAAY better. I am open, the dilator passes through. The abatement of symptoms happened after I started the high dose of Medrol (48mgs). There WAS narrowing there, yes, but he thinks it may likely be related to inflammation, especially since I developed a perianal fistula and an inflammation marker, like with perianal Crohn's type disease. We are looking at both sides. We haven't "ruled in or ruled... [ more ]
Grieving Old pouch Rachel I have to respectfully disagree with Jan’s last post. Based on my experience, you should not rule out a structural problem. I experienced minimal problems with my first pouch for nine years, but then started experiencing issues similar to yours, and others, discussed in this thread. As mentioned earlier in the thread, it is common for the intestine to narrow and develop adhesions and strictures over time. This is what happened to me. It was not obvious on the imaging, but my surgeon... [ more ]
Jan Dollar This definitely is sounding like it was an inflammatory flare and not structural, like a stricture. Glad things are simmering down for you. Hope the Humira kicks in. I wound up having to take it weekly when I was on it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How Am I Doing?
S struggling
Lambiepie I was on Cipro for several months and when that stopped working, Flagyl was added. After that, it was mix and match antibiotics. My symptoms would return as soon as I tried to go off an antibiotic. [ more ]
struggling Thanks for the response Lambiepie, I appreciate it. I'm wondering when you mention that you were put on Cipro was that just for a few weeks or something you were on long term? Because I have taken Cipro (along with another anti biotic which I can't recall) for about 12 days which did help, but after I stopped things come back to the way they were before. I will try the other suggestions that you wrote and will call my doctor and see what he recommends. [ more ]
Lambiepie Hi Struggling, you are about at the same point that I was post takedown when I was put on Cipro and finally experienced what a "normal" pouch felt like. I struggled for five or six months with everything you described. There is an adjustment period, but there comes a point when you just need some help. As far as consistency is concerned, I find that Pepto Bismol helps to form things just enough (too formed and there's straining.) Your bleeding suggests cuffitis, which can cause urgency as... [ more ]
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J-Pouch ForumsGeneral Discussion
Senior Pouchers
Kathy AKathy A
KOB Here in OZ Lomotil is available both as a prescription med and over the counter. Because of the way our heath system works it is cheaper, but less convenient, to get it via a prescription (on the PBS register). Regardless, both my GI Doctor and surgeon say lomotil is fine, but do not use on a continuous basis. Not because of any health aspects, but because (they say) it ceases to work after a couple of uses. they say its purpose is to hit the gut and do what it needs to do. The surgeon said... [ more ]
Rev Lenny My S Pouch has been an awkward addition to say the least! Its now been operational for 10 years and as I age it is becoming a nightmare! My final visit to the throne to empty the pouch can take up to 5 hours! I am now seriously looking into pouch irrigation as it is now taking its toll on my back, I am due to have an MRI to see what is causing the problem. A few months ago we moved into a bungalow where the toilet is much smaller than the previous one and is causing me severe back pain and... [ more ]
Scott F Lomotil is labeled as contraindicated with liver disease. Imodium is labeled as "caution advised" with liver disease. [ more ]
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J-Pouch ForumsGeneral Discussion
lomotil
G GraceB
GraceB Thanks CT I will call my doctor tomorow [ more ]
CTBarrister Grace- I am not sure if your issues relate to a spasmodic pouch, especially 4 years out from takedown. It sounds more like issues related to the strictures and meds which may be thickening your stools beyond what is appropriate, if in fact the stricture is not preventing absorption of the meds, as Scott suggested. It also could be SIBO/pouchitis. However if the spasmodic pouch symptoms I described fit your situation, it definitely should be discussed with your Doctor. I would also ask your... [ more ]
GraceB I forgot to mention ct suggested anti spasmodic I have to ask my doctor about that [ more ]
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J-Pouch ForumsGeneral Discussion
Gotta ask...
ATXGuyATXGuy
Lambiepie Ditto what everyone else said. Plus, if I skip food for too long, I get a whopper of a migraine so it's so not worth it. [ more ]
mgmt10 It doesn't matter what time I eat dinner. It's more WHAT I ate for dinner that would make a difference. I could eat at 5pm or 9pm and I would still get up my usual once at night to go. [ more ]
skn69 I tend to eat at around 8 pm with hubby most nights and after 9pm when I work late. It is a disaster for my sleep cycle and pouch because it gets very active about 3hrs after eating...if I go to bed at a decent hour then I get woken up in the middle of my sleep cycle...more than once. Kills me. So I try to only have a puréed veggie and a yoghurt or dixie cup or a piece of fruit when I get in late...or nothing at all other than a hot drink. The emptier the pouch the better I sleep...But I... [ more ]
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J-Pouch ForumsGeneral Discussion
flagyl
D dawn58
Spooky I agree with CTBarrister. When I was taking flagyl, I did much better on the lower dose - 250mg 2x per day rather than the 400mg 3x per day I was initially prescribed. I also did better when I took flagyl alone and not combined with cipro - the two-punch combination of cipro and flagyl completely zonked me out. Cipro also makes me terribly constipated; that being said, most people do tolerate cipro better than flagyl. I'm not in the norm in that respect. As for what you can do right now, I... [ more ]
CTBarrister Dawn, Unfortunately a lot of people have the same side effects with flagyl. Are you taking it with food? You might want to try the 250 mg tabs. That is what I have. Do you have 250 or 500? It comes in both. I personally can tolerate it well, but of the antibiotics prescribed for pouch issues, it is the most poorly tolerated antibiotic of them all. Xifaxin, cipro and augmentin are other possible antibiotics you could use. On the other hand, it works fairly well. I find it works well in combo... [ more ]
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J-Pouch ForumsGeneral Discussion
Milk?
allswellallswell
dew Some people who have problems with processed milk can tolerate raw milk well. [ more ]
Scott F Sharon- I meant the diarrhea effect the other way around. Diarrhea increases lactose intolerance. And yes, lactose intolerance can show up as diarrhea, or gassiness, or ... [ more ]
rachelraven Had the breath test as a kid with my UC dx and was found to be lactose intolerant. I'm sort of "selectively" affected by lactose as an adult with a "pretty good" pouch, though. Large bowl of ice cream, large glass of milk = gas and bloating/discomfort. Cheese of almost any kind (unless really soft and large large amounts), small amounts of milk in a recipe, yogurt = pretty ok. [ more ]
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J-Pouch ForumsGeneral Discussion
Headaches and Meds
B BClutters
Scott F I'd recommend using one or the other, but not both. As Jan wrote, they are acting on the same target, so combining them could be equivalent to an unintentional overdose. And everything else Jan said, too! [ more ]
Jan Dollar Probably not, but the only way to know is to stop taking one or both of them and see if your headaches resolve. Just be sure to gradually wean off. I would wean off the lomotil first, since it is a combination of two drugs. It is possible you have become sensitive to the atropine in it. The other drug acts pretty much the same way as the Imodium, through the opioid mu receptors. Another thought is that you are operating with chronic subclinical dehydration that could be contributing to... [ more ]
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J-Pouch ForumsGeneral Discussion
Ebola Possible Impact on J Pouchers
CTBarristerCTBarrister
ATXGuy Just a little humor to send this thread off...see the attachment... [ more ]
Jan Dollar I think the focus should be not on the specific event, wondering "what if," because if it were not for that, it would be something else, unless you lived in a bubble. For me, it is more of an academic interest to understand how this disease works. I guess I was lucky to be diagnosed in about a month in 1972. I was hospitalized once the flare was severe and a barium enema and sigmoidoscopy revealed pretty obvious UC. I wasn't even at a fancy university hospital. They did at first suspect food... [ more ]
CTBarrister Jan, I went straight from salmonella poisoning to UC. I never was completely healthy again after the summer of 1972, although I did have normal bowel movements for the first 9 years of my life. After the bout of salmonella poisoning I was hospitalized numerous times in both New York and Connecticut before they figured out what was wrong with me. This included a hospitalization in the winter of 1972-73 at Montefiore Hospital in New York City which was then known for its pediatric care, and I... [ more ]
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J-Pouch ForumsGeneral Discussion
Please help
CS Cherie Sayer
wsh6745 When I was that close to takedown, if I ate before bed I was up several times during the night too. I did not eat anything after 6:00 pm so I would have several hours to empty. Peanut butter does not work for me at all. If I eat peanut butter, my stools are much looser than normal too. I do better with yogurt and believe it or not grilled cheese and fried egg sandwiches with one piece of cheese on white bread worked about the best. I would not use butter, mayo or sauces on the sandwiches. I... [ more ]
boy's mom I buy acacia powder made by Renew and put it in oo empty capsules for my son. He takes 5 at breakfast, 5 in late afternoon and 5 at bedtime ( along with immodium) it makes his bms formed and helps him get a longer sleep. But it has taken past a year take down for him to ever sleep through the night. [ more ]
Mysticobra I love peanut butter and eat a lot but I find that at times it does not hold together and not to be gross.. But oozes all day if I eat too much. Lomotal seems to do best for me but I have to take less than what is prescribed because it works too well and slows it down too much. Yes... Laying down in bed causes problems. If you can before bed stretch out on a couch and swap sides. Move the go out before you go to bed. I tried the recliner the g but I just cannot get sleep in one. Unless I am... [ more ]
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J-Pouch ForumsGeneral Discussion
Can't use the toilet without waking the whole house up!!
N Nork
Scott F There have been a few discussion threads here aboout methods for reducing gas. I'd suggest using the Find function for some ideas. [ more ]
CeeeeCeeee As embarrassing as it is, when I don't produce gas when having a BM, I feel cheated! It is my duct cleaner-outer and once it is over....ahhhhh! [ more ]
TE Marie Gas is what I consider the propellant behind the BM's since we don't have the natural contractions of our large intestine anymore or something like that. I have a painful time when I can't get the gas out! I agree about the pushing. If you are pushing too hard you need to soften up your BM's some for the health of your pouch. I hate using restrooms at other peoples houses, unless I can seek one out on a different floor! [ more ]
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J-Pouch ForumsGeneral Discussion
Just had j-pouch removed.
HH Holly HM
skn69 Congratulations Holly, You made it past the worse part...now get strong, healthy and get back to living your life they way you deserve to. Wonderful hubby...there should be more like him in this world! Sharon [ more ]
dtmack Definitely thinking about you. Good luck with your continued recovery. I hope everything goes fantastic. Stay strong. Derek [ more ]
Caty Holly, I'm so happy for you. Things will get better and better. What a great husband! Your new, wonderful life is about to begin! Caty [ more ]
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J-Pouch ForumsGeneral Discussion
ready to change diet
allswellallswell
sudie Just saw your post on milk was having the same problems lots of noise spasm. Acidic wheni went to the loo, a Nathropatic and also a dietitian were able to help, I have no gluten ,milk red meat,found red meat made a big difference with the help of a dietician am applying fodmap eating has really helped I was so unwell was prepared to give my jpouch up gave myself 12 months for a result look like it's working great to get some results that are positive. [ more ]
allswell Thanks. She said to take the proctofoam for all the cuts, but I think I need to clarify on weathere it was a fissure or almost one. I am going to start the oatmeal. Not a big fan but ill probably grow to love it. I've grown a taste for the orange Metamucil actually. [ more ]
Dog 3 months post take down? Hmmm. . .the burning, cutting feeling might be something your Dr needs to check out. . .could be a fissure. Try using a sitz bath and see if that helps. If wiping causes the burning sensation, consider getting a nice shower head and see if rinsing instead of wiping helps. I'd try going without the immodium if your stools are fairly well formed. Not sure about the metamucil. . .fiber should help bulk things up without it getting too compact to easily empty your pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Pending surgery for Small Bowel Obstructions
B bikindi
Scott F Assuming the surgery you're heading for is lysis (cutting) of adhesions, one important thing to do is have realistic expectations. There is a real risk of a frustrating outcome. The surgery generally creates some new adhesions, so you have to hope they are less troublesome than the ones you're getting rid of. The surgery definitely helps some people. When it's your only reasonable option then you just go ahead and do it. I think it works best with your eyes wide open. [ more ]
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J-Pouch ForumsGeneral Discussion
Any Suggestions?
D DannyEndurance
Dog When you were released from the hospital, how much did your diet change? That is, now that you are out, do you eat in a hurry, don't chew enough, etc. Just my 2 cents on things to look for. Definitely second Spooky's suggestion to go on a low residue diet. [ more ]
CTBarrister In addition to the suggestions already made by Spooky, I have been able to relieve partial obstructions by doing a lot of walking around. Inactivity is not your friend when your gut is blocked up. The act of vomiting has itself relieved one of my obstructions, just before NG tube was about to be inserted in the ER. Also, as suggested by Spooky, pouchitis that is poorly controlled or out of control can cause strictures. This happened to me in 2012 when an MRI Enterography revealed my J Pouch... [ more ]
DannyEndurance Spooky, I stopped taking Benefiber and drank plenty today. I feel so much better already. Thank you for your reply. I'm going to keep up with everything you suggested. Thanks again, it helped so much. [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula problems
SavannahSavannah
rachelraven I can't answer that... if the fistula is suspected to be because of Crohn's or UC or IBD, then yes, the chance is there that it can close on something like Remicade or Humira. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2689393/ In my research (limited, obviously), Cipro and Flagyl won't "fix" a fistula. It certainly didn't help mine. [ more ]
Pouchomarx does biologics work for sinus tracts as well or just chance of working on fistulas? I have a sinus that w think has been there from leak on initial surgery in 2008. Dr Shen treated one end last year with several needle knife therapies and is now working on the other end. I never did mention Humira nor did he.. [ more ]
rachelraven My surgeon won't touch me because he fears continence issues with a repair. All I have from him is the seton drain, but I think (hope) my GI is on track with treating me for further IBD issues. At least, I'm glad he's taking the chance. And I do think it's starting to work. I feel the best I've felt in ages. [ more ]
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J-Pouch ForumsGeneral Discussion
metamucil
D dawn58
JJA I used the orange power originally-mixed about 1 part powder with 1 part water into a sludge in a Dixie cup and down the hatch. Then I used the wafer bars for years when they first came out (ate one before every meal) but after a couple years I became taste averse to them. Thankfully they came out with the capsules-so easy! I swallow about 8 before every meal (you may need less, but I have sphincter issues so really need to try to thicken as much as possible). I buy the generic ones at Sam's... [ more ]
slightly_creative CJB I went out today to find it, the first drug store, no dice... But the drug store closest to my house had it! Go figure. Picked up some juice, came home mixed me a drink and down it went. It's flavourless which I love, the only con is the tiny amounts of particles you occasionally drink. That's okay though! Considered the Metamucil pills but they're more money and don't seem like they would last as long as a jug of powder. Mike [ more ]
JHendrix I'm a fan of pure psyllium. It's like Metamucil but no flavor, sugar, fake sugar. It doesn't dissolve as well as Metamucil but I don't find that to be a problem at all. I take quite a bit of it daily (4 doses). [ more ]
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J-Pouch ForumsGeneral Discussion
Barrett's Esophagus?
C CaySeeBee
Murray Ive had Barrett's for ten years once you get the acid reflux under control nexeium or zantac, you get the idea the barrett's will not be an issue. [ more ]
CJB Hi, I also started have some acid reflux and heartburn problems months ago. Perhaps it is just another peri-menopause symptom, but I had an upper GI contrast just the same. They didn't find anything wrong but did find 3 polyps in my stomach. It freaked me out but my GI wasn't overly concerned. He said I could investigate further with an endoscope if I was really worried. Shouldn't he be the one that is worried? Anyways, my heartburn and acid reflux comes and goes but is really tolerable. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Diethylstilbestrol or DES...anyone?
skn69skn69
skn69 Hi Liz, Welcome to our very unfortunate club! My mom (once I had confronted her on it) asked me what it would have changed if I had known...I answered that I would not have spent my life asking myself 'what next?'...it seemed that every single time that I had something moderately under control something new popped up... Had a dozen and a half surgeries before the k pouch, finally got that in hand and then poof! I miscarry every single time at 4 months (hemi uterus with ruddimentary horn,... [ more ]
liz11 I'm a DES daughter. My mum took it to prevent miscarrying me. She had three prior miscarriages. And a complicated pregnancy with me. I'm a firm believer that DES has caused many of my medical problems, though there are complete facts as to whether or not it is linked with autoimmune issues. Thing is whether or not you have a DES link.. there really is nothing to be done about it. Just have to be more vigilant on certain yearly exams, etc. [ more ]
skn69 Beckysmom, So glad to hear the good news...iron levels are not everything...keep her on low carbs and slightly higher protiens and she may find herself full of energy again. I am experimenting. Although not stict about any one diet regime, I have severely reduce carbs (bread, cake, pastries, pastas, rice, potatoes except for sweet potatoes) and sugars. The amazing result was that I had better pouch and gut reactions and my energy level soared. Little test was this weekend when I did a minor... [ more ]
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J-Pouch ForumsGeneral Discussion
Discouraged 6 weeks post op, in need of encouragement
slightly_creativeslightly_creative
slightly_creative Thank you everyone for all the kind words and insight. Whenever I'm feeling down, I'll be sure to return to this thread to re-read all that you've said. Kevin, thank you for reaching out. I wish you the best in your recovery, hoping that it's a speedy one! "Stay positive, there's the way we'd like it to be and there's the way it is. Make the way it is the way you'd like it to be" I really like this saying, will be one to remember! -Mike [ more ]
KOB Mike, Look I had UC for 32 years. Last several years just about confined to the house. 100% remission with Vedilisimab(sp), but stopped working after a year all down hill from that. Had put off surgery for a long time, didn't want to lose a colon (irreversible) only to find a miracle cure for UC the next week, a common mind-set I'm told. Colon removed 9 July, Reversal last Wednesday (completed 1600 Wednesday, discharged 1000 Friday). Got to say I'm not a bag man and was in denial I guess. [ more ]
samlc25 As difficult as it is, you have to be patient. It took me several months to get in a good routine and a full year to fully recover. You'll be fine. Stay positive. [ more ]
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J-Pouch ForumsGeneral Discussion
Aussie'from melbourne
S sudie
KOB FWIW, I was in Melbourne with a 'bag' emergency, ie. couldn't get them to stick and ran out on a Sunday. Long story short, couldn't get them anywhere so rang the gastro unit at Royal Melbourne. They said just come in and gave me a box of (concave) bags which worked a treat. As noted, they also have a 24 hour emergency department (parking is expensive though)... You could ring them up and get the number of the gastro resident on call. I have that for RPAH in Sydney (I'm in Canberra and just... [ more ]
Kushami Hi sudie, Sorry I didn't see your post sooner. I hope your trip went okay with no blockages. Just in case anyone is reading this at a later date, St Vincents and the Royal Melbourne are the two public hospitals with emergency depts close to Melbourne city (both are just on the edge of the CBD). Cheers, Sarah [ more ]
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J-Pouch ForumsGeneral Discussion
Polyps!!!
dcpropilotdcpropilot
Jan Dollar They were probably inflammatory polyps. Pretty common and not likely to be dysplastic. It is difficult to determine true dysplasia when there is a lot of inflammation, as there is inflammatory dysplasia that looks similar to precancerous dysplasia. It is safe to wait and biopsy later. Jan [ more ]
jeane Maybe after a month of cortifoam treatment he can get better biopsies. I honestly have never heard of this. I have had cuff inflammation on and off for almost four years and my GI always manages to perform biopsies. Are you having any symptoms? Couldn't he have at least biopsied the polyp? [ more ]
dcpropilot He said that he couldn't get a good biopsy with the current inflammation.... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
How to dilate a fibrotic anastomotic stricture ?
A Arnaud
Arnaud Thanks Jan. No they haven't tried injections, but it's a good idea, I'll mention it to my doctors (have seen it also in some of Bo Shen's articles). I prefer to keep using a Medina catheter (which is my default solution at this point) than going through more surgery ! Cheers, A [ more ]
Jan Dollar If it is fibrotic and does not respond to balloon or manual dilation, the next step is typically not more dilation attempts, but surgery (unfortunately). This would mean stricturoplasty or pouch advancement. Neither one is a cake walk. http://www.medscape.com/viewarticle/433917 Have they tried injections into the stricture during balloon dilation? Sometimes they use steroids or antibiotics. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Healing my fistula
BebeksporBebekspor
Pluot I have a friend who took Humira for RA and she couldn't do the pen either, the exact same thing happened (it would pop out and waste all the liquid). In the end she went to her local doctor's office and a nurse did the injections for her. Not the most convenient option but it worked for her! [ more ]
Bebekspor Yes, great news! I'm intrigued by this syringe option, I didn't know it existed. The pen made me have panic attacks (slight exaggeration). Katie [ more ]
JJA RR-That is awesome news!!! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Anyone experience sudden depression with Flagyl?
K kereen
Scott F There are no known drug interactions between Flagyl and doxycycline. While it's impossible to completely rule out a combination effect, we need all the safe & effective drugs we can have available to us in this category. Blaming both drugs may be overkill, although it's the approach most likely to avoid a recurrence of a nasty side effect. Speaking for myself, though, the cost of losing an effective antibiotic by being overcautious would be too high a price. I'd be alert while trying... [ more ]
kereen I will let my doc know at my next appt. I discontinued both meds and I'm starting to feel a little better each day but I'm still not quite myself. I have rarely felt like this and it came on so suddenly, I'm sure it's the combination of the two medications. I've been on weekly Humira for several months now and I've had almost daily low grade fevers and horrid headaches. I thought it was sinusitis and that's why I took the dose of doxycycline. Went in for my iron infusion yesterday and I had... [ more ]
Spooky Depression/anxiety have been documented as rarer side effects of both cipro and flagyl, especially with higher doses. As Jan suggests, it also could have been the combination of the two meds you were taking. You should report any symptoms to your doctor. There are other treatment options that might not cause such a reaction. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Does meds before = increased frequency after?
KeepMovinOnKeepMovinOn
Shainy You will have more bowel to absorb things after takedown. Plus the jpouch will absorb fluids too so I don't see how getting rid of the loop ileostomy can be a backwards step. Unless you get other complications like pouchitis etc but good chance all will be fine. You can always go back to a loop... [ more ]
KeepMovinOn Rachel - yeah...I have heard a lot of it's "patient dependent" answers and it seems like this may be another one. Where is that crystal ball when you need one? I am curious as to why no one seems to be doing any studies to try and track these things, since if there are any correlations, then that could help predict future success. so hard to make a decision about a surgery when you don't know what the outcome will be. Liz - good to know it does not appear to be a direct correlation. At least... [ more ]
Pluot I took six Imodium tablets every day when I had my loop ileostomy and my output was still mostly liquid. The difference is night and day with my j-pouch -- I only use the bathroom 5-6 times per day and if anything my consistency tends to be a little too solid sometimes. No one can guarantee your situation one way or another after takedown, but your surgeon is wrong to say that needing bowel slowers before takedown is indicative of a need for them later. The fact is that right now a... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Entyvio
B BlmBlp
GraceB It is funny that I was just about to through out the question if anyone has tried Entyvio. I was just at my rheumatologist and he asked me to ask my gastro about Entyvio but I don't know if that is for us j-pouchers. Is there any j-pouchers out there that is on this and if there is how are you responding to it I have J-pouch due to Ulcerative Colitis taking antibiotics every day due to chronic pouchitis Thanks Grace [ more ]
BlmBlp Kevin, I really appreciate your feedback and support. Hope you are well. My first infusion is coming up soon. [ more ]
BlmBlp Hi Steve, Thank you for the reference. I will check it out. My first infusion is tentatively set up for 2 weeks from now. Nervous about trying a new drug. Barbara [ more ]
See all 8 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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