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J-Pouch ForumsK-Pouch Korner
Pouchitis and Antibiotics, need help
F Fulton762
skn69 Fulton, You can take prune juice at any time of the day or night...in the very begining I took it 3xs a day with meals and things just booted it out of my pouch at warp speed...if you combine it with coffee it becomes k pouch draino!...our pouches a conceived to not hold fecal matter for too long otherwise we end up with all sorts of problems...so try the prune juice at the most convienent time of day for you...it takes about 3-6hrs to run through you depending on what is inside of you and... [ more ]
Fulton762 Yes, they scoped me in the hospital and it was pouchitis. I do not have crohns and I was glad to hear that. I'm just going through a bad time right now, I was taking benzo's for over 15 years and the side effects were getting bad. I stopped CT and the withdrawal is pretty bad. My CNS is overly sensitive to everything and the stress of the pouchitis was too much to bear. I've read online that Cipro can increase and prolong benzo WD as it effects your CNS also and from what I went through,... [ more ]
vanessavy Xifacin is a safe long term antibiotic that might be an option. Are you sure it is pouchitis? Been diagnosed by scope? [ more ]
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J-Pouch ForumsHelp! Need advice now!
First anal abscess
H Haliah
Haliah Thank you all for the kind responses! They made me feel much better last night. It does seem as though my packing actually fell out during one of my bathroom trips.. so I've just taped it up with some gauze. Maybe my doctor will have to repack it tomorrow. No breaks for us pouch ladies [ more ]
rachelraven I had one recently (December) that no one would commit to calling a perianal abscess. Eventually they cut it to drain, but it had started on its own. Formed a fistula, and I now have a seton. At least 1/2 of these abscesses develop a fistula, so be prepared for that possibility. Get a sitz bath. When the packing is out, a sitz bath is soothing after a bowel movement. Actually I was allowed to soak with my packing, because it was just a wee wick. You can add some Epsom salts, or even table... [ more ]
Jan Dollar With as dumb as it sounds, it really will not be much of a problem. Once that packing is out, you'll feel a lot better and can soak in the tub. Now that the abscess is drained and the wound opened, it will heal from the inside out. So, it really does not matter what is going on on the outside. I know it seems counter intuitive, but it really is OK. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
daughter in hospital-extreme pain around navel
Art MomArt Mom
skn69 Art Mom, Ulcers in the pouch are not (as far as I know) a sign of pouchitis, they are usually a sign of something else...blood from the rectum that is no longer there is not common either...but put them together and for me they spell a sensitivity to aspirin or other pain meds...has she been on anything lately? For period pain or back pain? Aspirin and other OTC drugs can cause bleeding (they are used as anticoagulants after all) and they can also cause ulcers...its a thought... Keep us up... [ more ]
liz11 maybe you want to move her to cleveland as an in patient right now. might be best to be where all the experts are, including infectious disease docs, etc. you could get a direct admit through Dr. Dietz's office I am sure. so you wouldn't have to wait through the emergency room just an idea. [ more ]
vanessavy FYI Shen is in China until the 14th so email is best. [ more ]
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J-Pouch ForumsGeneral Discussion
Baking Soda
G grandmaof1
rachelraven Sodium bicarbonate tabs? They're very cheap. My dog was on them for Fanconi's Disorder for years. 1,000 tabs = $30 here. It's OTC, no prescription necessary. [ more ]
FitterPeter I take just plain baking soda (mixed with water of course)ot a glass of milk. I've heard many times that aloe vera juice also work ( article about benefits of aloe drink ). Of course they all just cover up the symptoms and not treating the disease of course, but at least it's safe. [ more ]
skn69 Yup, here they still use it with or in or instead of toothpaste, deodorant, foot powder (mixed with cornstarch), baby powder etc...very useful...between vinager, baking soda and salt you can clean and refresh most of your body and house (great for bag odours and vinager can remove those stains from leaky pouches)... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Help with protein shakes
B Blairisking
Manchester I'm 7 years post all in one surgery (no bag). At first I couldn't tolerate shakes but no I am fine. No increased output. Give it time and as your body accepts your new plumbing then you will be able to slowly increase. I take codeine for slowing output. 8 per day and I couldn't live without them. Not from a dependency point of view but they cut my BMs in half. I would recommend them to anyone. [ more ]
TE Marie My nutritionist suggested PlantFusion which is all plant based. I take an Imodium before I drink it as while it provides 43% of the daily required protein I use fruits along with a banana each day. It is hypo allergenic so there is no whey in it which is in a lot of protein shakes. No nuts etc. You can buy it at health food stores and/or on line. If you go to their website and enter your zip code it will call up the retail sites you can purchase it from where you live. [ more ]
PolypsAplenty Because of a few bowel obstructions, I lost 40 pounds total after the reversal and was underweight. I was taking ensure and muscle milk to try to gain weight, but that really caused my frequency to go up after reversal. Now, I'm eating those extra protein clif bars, and that's really working. Also, I eat a lot of natural protein from nuts and meat - so between those things, I've gained back about 10 pounds. Yay! [ more ]
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J-Pouch ForumsGeneral Discussion
Small Bowel Resection
L Lottie
ELH My two last surgeries were because I had blockages at least twice a week. I was told that I had an opening the size of a pinhole at the old stoma site. I had it resectioned and it was good about 2 months and then it started again. The second time my surgeon figured that I was reacting to sutures and this time he resectioned again but stapled everything. No more constant blockages. It's been 5 years since the last surgery. I've had a few blockages since then, but not because of extreme... [ more ]
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J-Pouch ForumsGeneral Discussion
vsl#3ds
OP Oh Poo
UCWarrior2010 Oh Poo...why has your doctor asked you take VSL? My surgeon, who is quite well known, has told me multiple times that in his experience VSL does nothing to prevent pouchitis. He has more than 20 years of experience with j-pouches. I still take it because my insurance pays for them but if I had to shell out a significant amount to get them I would be more skeptical of their effectiveness. He told that when VSL came out there was a lot of excitement and hope about it preventing pouchitis but... [ more ]
Rocket I'm lucky that way with my insurance. I get two boxes, 30 in each box for 60 packets for only $10.00. YES Ten Dollars. [ more ]
Holly M I apy a $50.00 co-pay for a 30 day supply. I see the price without insurance from Rite Aide is $190.00. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery while pregnant
E eec24
mgmt10 I'm assuming you are the same person that posted over on the healingwell forum. I was thinking of you and hoping you are ok. Did they start the Cyclosporine yet? If I can say one good thing about that drug it's that it works really fast. [ more ]
Jan Dollar I don't think they would do a j-pouch during pregnancy. Even a colectomy would be only on an emergency basis, I believe. From what I've read, what they do is a diverting ileostomy to tide you over until you are ready to deliver. If it is safe or the colon really needs to go, they will do a total or subtotal colectomy. But, the j-pouch construction absolutely would not happen until after delivery. They leave the rectum intact so the j-pouch is possible later. The reasons are many, but mostly... [ more ]
TE Marie So sorry you are having such serious problems. You probably need and OBGYN with you in surgery too. I suggest Mayo's in Rochester, MN, where I go or Cleveland Clinic in Cleveland, OH. They are the top 2 hospitals in the country in GI. If I were you I'd go to which ever one I could get into first. I don't know if your doctors are going to refer you, which would get your appointments sooner than if you'd be setting up your own - but maybe not. Please take care and let us know how you are doing. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Support Group Meetings near Pittsburgh?
suebearsuebear
rachelraven Pittsburgh PA is with an h. Others in the US dropped it, mostly. My surgery was at UPMC Presby in 1991, and there was one there in Oakland that many years ago. Have them call 866-4GASTRO to check with the Digestive Disorders clinic. My surgeon Dr. Schraut is still there. His nurse's name is Laura Peduzzi... They could probably guide you IF you're talking Pittsburgh PA. I'm close to Pittsburgh and still get my care there... Your friend could contact me, too... Msg me if interested. [ more ]
Jan Dollar I presume you are talking about Pittsburgh, PA; not Pittsburg, CA? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Colon Removal through Anus???
J JetSet16
JetSet16 Thanks ladies. I guess i'm just worried that this type of extraction may cause more problems with continence vs. other methods. I'll try to follow up with the doctor. Thanks! [ more ]
vanessavy Heard about it. I know CC does one port colectomoes through the belly button so no scars are there. [ more ]
Jan Dollar Well, of course, they would need to have laproscopic to release the colon from the mesentery, which attaches it to the posterior of the abdominal wall. Then, if your colon is in good enough shape, I suppose it could be brought out through the rectum/anus. They are always trying new ideas. Let us know how it all comes out! Jan [ more ]
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J-Pouch ForumsPouchitis
Had scope today and here to brag!
Jan DollarJan Dollar
Jan Dollar Simponi is a biologic, similar to Remicade, Humira, and Embrel. It could be used for pouchitis, but probably only if your underlying diagnosis is ankylosing spondylitis or a related disease or rheumatoid arthritis. It is going to be approved for UC soon, so if that is your diagnosis, then it would be appropriate. Humira is approved for UC already (and Crohn's too). Sure there are potential side effects, just like any other drug. Mostly it is liver and bone marrow issues, and potential for... [ more ]
boy's mom Hello, what is simponi? And will that be approved to treat pouchitis? Are there side effects? Thank you. [ more ]
Ginabello Great news Jan(: [ more ]
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J-Pouch ForumsPouchitis
Pepto Bismol & Immodium
G grandmaof1
rachelraven My body is still adjusting 2 decades later. It's always a new adventure, not something that changes frequently, but I'd say there are changes in 5 year chunks for me, mostly for the better, but sometimes not. Plus, this surgery is now around 30ish years old. As we live longer and longer with these pouches, I'm sure they'll note more and more things that can happen in time. I was 19 when I had it done. I'm 42 soon... I'm sure at 80 things might even change more. [ more ]
TE Marie I take s.boulardii probiotics to help keep c.diff infections at bay and VSL#3DS to keep pouchitis away. I take Imodium to slow things down when I'm eating food like fruit smoothies. My Mayo GI specialist told me to quit pepto and digestive enzimes. He also didn't mention metamucil just Imodium and up to 8 a day with at least one at bedtime to help keep the night time trips and associated wake ups down. I have chronic cuffitis and IPS. I have had frequent c-diff infections. I take Flagyl for... [ more ]
TinCan I just looked up Florax and discovered that it contains Sacchromyces cerevisiae. I can't be sure, but the description sounds like it is actually S. boulardii. Either way it is a fungal form of probiotic whereas vsl is bacterial. I have no idea if it would work better than vsl - probably depends upon your particular situation and the dosage (which I didn't find on the Florax website). If you are taking cipro, however, the Florax may be of benefit since it will be unaffected by the antibiotic. [ more ]
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J-Pouch ForumsGeneral Discussion
Tiredness
ManchesterManchester
Manchester I suffer terribly from sleep paralysis. This is usually when i'm waking although it has recently started to happen when falling asleep also which is even more terrifying as it feels like your literlly dying and if you let your body sleep while your brain is awake you will never wake up. Horrible [ more ]
TE Marie Also Chronic Fatigue and Fibromyalgia are possibilities. Please look them up and see if you have their symptoms. Fibromyalgia has a chronic fatigue component to it and I have Fibro. There are varying degrees of it just like any other disease or health problem. Also vitamin D and B12 which I'm petty sure was checked. [ more ]
Scott F Another possibility is depression. Good news: no blood test is needed to rule it in or out! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch Issues, Doctor has given up on me, advice?
J Jbryyce
TE Marie I space them 3-4 hours apart when I'm taking an antibiotic for c-diff. I don't want to get pouchitis. [ more ]
lovedby2 That is good to know! I will be asking my GI why he failed to mention this to me. Thanks. [ more ]
dawn58 lovedby2, you should not be taking probiotic and antibiotic at the same time. You should wait a couple or few hours in between. [ more ]
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J-Pouch ForumsGeneral Discussion
Innovation for Ostomy Bag
P Pkitty
vanessavy No actually it is stated for ileo or colostomy. http://www.neovalve.net/the-stomalife.php It is drained but differently, there is no pouch/ the cool thing is the invetion of gas to be released since that is the main issue some people have. Having to drain your pouch fully to release gas. I could go 20 hours easily without intubation if I didn't have to get gas out. I am sure ostomies one day will be a thing of the past. People are inventing all the time. When I got my continent ileo I... [ more ]
kathy smith It states it's for a colostomy which is differect than a ileostomy. A colostomy would collect waste from the colon which is quite different from small intestine collection. I would assume a colostomy would still have part of a colon acting 'colon-like', i.e., more controllable. Normally colostomy appliances are non-drainable, & ileostomy ones drainable. People with colostomies who have ostomies of the sigmoid colon or descending colon may have the option of irrigation, which allows for... [ more ]
vanessavy http://www.neovalve.net/ It is really just a guy's dream device he has no backing and I don't think they can even do clinical trials. But it really is no different than a BCIR/Kpouch. Instead you get this weird clamp installed in you. [ more ]
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J-Pouch ForumsGeneral Discussion
GI Drs in North Chicago????
B beckysmom
beckysmom Anyone else have any GI recommendations? Thank you! [ more ]
beckysmom Thank you tertenpin! [ more ]
tertenpin I've heard nothing but good things about Ali Keshavarzian at Rush. I've never personally gone to him, but know several people who have and they have all said he is great! I do know my surgeon referred his patients who needed a GI doc to him as well. Hope that helps! [ more ]
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J-Pouch ForumsGeneral Discussion
6 days post..straining and hard to pee..normal?
dgtracydgtracy
dgtracy looks like if i drink more, specifically ALOT more, than its easier to just be able to go. I'm also becoming aware there appears to be more females responding then males. which i have no problem with! [ more ]
Av8erchic I also had a difficult time using the restroom after the second surgery and did not have a catheter. Essentially, my surgeon said it was due to everything being moved around in my belly. He said to give it a few days to see if it got any better, or else he was going to send me to a specialist. It got better on it's own very gradually. Seemed like it took 3-4 weeks before I could actually go 'on command' so to speak. Hope things get better for you! [ more ]
CeeeeCeeee I had complete urinary retention for 6 months after step one. No problem after step two. My urologist encouraged me to keep trying to void naturally prior to self catheterizing. No luck for a long time. Gradually, some drops of urine appeared naturally and over a month or two, increased. Soon, thereafter, my normal urinary function returned. Apparently, the nerves which control bladder function are very close to the area in which the j-pouch surgery is performed. Clamping things needs to... [ more ]
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J-Pouch ForumsGeneral Discussion
Peripheral Neuropathy anyone?
TE MarieTE Marie
TE Marie Thanks Jan, the second one is really good. Sounds like when I say "my muscles turn to jello" when I fall, among other good information. [ more ]
Jan Dollar I presume you are talking about nerve velocity studies (NVS) and electromyelogram (EMG) where they attach electrodes to test your nerves conduction of electrical impulses through your muscles. A negative test does not mean there is no problem. It just means there is no permanent damage of the major nerves. http://www.atlantamedcenter.co...und-care-center.aspx I "passed" my tests when they were trying to figure out why I was having tingling and numbness in my arms. That ruled out carpal... [ more ]
TE Marie Hi Jan, Well they don't sound like me since I had no problems in the beginning, maybe the devil drug prednisone masked it. I probably was on it for 4-5 years before I had and foot problems. So there probably is no cause and effect, right? I'm an accountant I keep trying to make things logical. Like there was some little beaker in my body that could only hold so much and when it got full of the mesalamine it tipped over and started causing neuropathic damage to my feet. Like alcohol does the... [ more ]
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J-Pouch ForumsGeneral Discussion
question for Jan
S scallop
Jan Dollar Have you ever tried cholestramine powder or Cholestid tablets for the butt burn (Rx only)? It binds with the bile acids, so works differently than stomach acid reducers. I presume you've tried all the fiber bulking agents... Jan [ more ]
scallop Hi Jan-- Thanks. The gas has decreased although the butt burn is bad as ever. Hope you are well. Debbie [ more ]
Jan Dollar Sure, that's definitely possible. But, you are doing the best you can to gradually wean off the stuff. Hopefully, this will even out over time. About the only thing I could suggest is to reduce your carb intake. Undigested carbs increase gas production. Maybe some Beano or other digestive enzymes. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
chronic butt burn for years
S scallop
scallop Hi Jeane -- I'm sorry I never replied to your question from February. I had the pouch re-do because I had a chronic abcess and leak at the anastamosis which had been there since my initial surgery. Did not have chronic cuffitis. [ more ]
TE Marie Good Roberta,you don't have to wait long. Take Care [ more ]
RLC Thank you TE Marie for your thoughts. I don't worry until I need to. I go 2/12 to the surgeon for the lesion and will no more. I go back to GI 2/14 so I will inform her of the outcome and stay tune.....! All the best to all of us - Roberta [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone plugged in high up with CCFA Team Challenge?
ElmerFuddElmerFudd
Lynne2 My experience with Team Challenge echoes what Liz wrote above. I'm sure there are people with different goals who loved it; however, I found the focus on the vacation element of TC and the inflexibility of some of their rules to not be aligned with what I was trying to accomplish. I tried working through our local chapter about my concerns and got nowhere; I wrote the CCFA President in NY and never heard back (which I now realize was a misguided way for me to approach the problem). So, I bet... [ more ]
liz11 elmer, I've had some very bad TC experiences myself. Might I suggest you also contact your local CC BOARD members. Far more powerful people than the local executive director. I have found TC to be quite the cliquish thing. Lots of people involved, "leading" who may just be in for mini vacations. Have contacted Craig myself in the past (after my local TC leader reprimanded me for having to run out to the bathroom at the end of the pasta party for the vegas half in 2011), and he never even... [ more ]
ElmerFudd Thanks Mustang! [ more ]
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J-Pouch ForumsGeneral Discussion
any comments on recent biopsy results?
J jeane
Scott F If it's gastritis a course of Zantac and/or antacids might clear it up, and in any case would probably do no harm. You'd have to be willing to tolerate not knowing for sure what it was (assuming it goes away). [ more ]
jeane Jan, I wonder if my pain is gastritis. It is very far up under the rib cage left rib cage and tends to continue lower than the belly button. It feels like a knife is being stuck in my side with the upper left area hurting the most (constant, deep dull aching pain). I have mentioned it to me GI who has also said it could be adhesions, but this is pretty constant at times for several days on end and pretty agonizing. Out next steps are upper GI series if this continues but I often wonder if... [ more ]
TE Marie Thanks Jan, I'm calling my left sided off and on pains adhesion pains, like the rest of them. They can start going away for good any day now Actually they are better than they were when I look back a year or 6 months ago. I have to look way far back, things are moving slowly here and unfortunately my cuffitis and/or c-diff is back. [ more ]
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J-Pouch ForumsGeneral Discussion
Difficult situation-overwhelmed on what to do.....
N Nat
Nat Thank you so much, Nys-I appreciate your info-means so much. I will definitely email Vicki tonight. I think as the day has gone on, my thoughts have changed even from yesterday's research and thoughts of just going with the other colorectal surgeon here in the practice, to really thinking otherwise, and thinking of Cleveland clinic as a reality -even if its just for more information and 2nd opinion on other options. Thank you for providing an extra push with that information for me to take a... [ more ]
nys Rumplev@ccf.org This is the email for Vicki, Dr. Remzi's head nurse. Email her your concerns and she will help you take care of everything you need. She can talk to Dr. Remzi and get an idea of a timeline, etc. Atlanta is 12 hours by car from Cleveland, but it is your life , your health, and YOU are worth it. I currently live in Cincinnati, which is 4 hrs away, but am relocating to Charleston, SC in a month. CC will be 16 hrs away, but I will go there for my 2 year check ups or any other... [ more ]
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J-Pouch ForumsHelp! Need advice now!
nerve damage from long term flagyl
B badguts
TE Marie When you go off the flagyl does the feeling in your feet come back? I have neuropathy in my feet and the neurologist said the damage is not reversa ble and he has not figured out what caused it. I'm just putting my 2 cents in to say if they go back to normal you are lucky and don't take flagyl again. I wonder if all the years on asacol did this to my feet? Thanks for the post, I just thought of something else, asacol, to check out. I'm afraid until we find the cause I might get more problems... [ more ]
Jan Dollar There's Tindamax, chemically similar ro Flagyl, but with fewer side effects. It seems to be the "go-to" antibiotic for Dr. Shen for folks who can no longer take Flagyl. http://www.tindamax.com/ If you haven't been screened yet, you should be tested for C. difficile infection, since Flagyl seems to be the only antibiotic that works. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Butt burn and frequent output.
Uncle PocketsUncle Pockets
TE Marie They are worth a little BB Mark. I leave the jaleapenos off though. [ more ]
Mark N I am about 7 uneventful years since takedown and I used to have chronic butburn. I stopped all alcohol and it went away 95% until they opened a Subway store near me. I just love the spicy Italian subs with all the pepperchihis and other hot peppers and so lately, butburn is back! I have a pain med crème I get from my doctor and I use a bidet and that helps. I wish I had the self control to eat ham and cheese or something besides spicy Italian subs! [ more ]
Scott F It's also worth remembering that people without J Pouches talk about the butt pain associated with spicy food. It's not universal, but it's common. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe Pain and spasms
S Solomin
TE Marie Ouch! It was all damned up, so to speak. I'm so glad you went to the hospital. That would have only gotten worse. Thanks for the update. Please let us know how you are doing when you can. [ more ]
Solomin Update - I went ot emergency early Saturday morning - I have been admitted after being in emergeny (short term) for 48 hours; It looks like the hole for my stoma is too small; it is also swollen,affecting my ability to pass stool. Thanks for the advice. Cheers, Solomin [ more ]
Ikh I had the same, then noticed I had to empty the pouch. don't know how much is it normal; I currently empty the pouch each 1-3 days, and if too much time passes before emptying, have very strongs cramps and spasms. So try to empty it. What I wonder if this can be a negative predictive sign of pouchitis? [ more ]
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J-Pouch ForumsGeneral Discussion
C Difficile, Vancomycin, & Surgery
Lynne2Lynne2
vanessavy you are more open to getting C.diff if on Cipro, Suprax, Omniceff and a few other antitiocs. I most likely had C.diff since my surgery. I suffered a lot this past year. The thing that tipped Shen off is when I said it smelled like rotting fish was coming out of me. I take Florastor. I read about it from the cdiff message board that is out there. Might be cdiff.org not sure, google would pull it up I am sure. there are a lot of success stories on there. People who get it with Chron's seem to... [ more ]
TE Marie My doctors didn't tell me to use it. It was probably Vanessavy and others on here. I ordered it on-line and use it as directed on the bottle. I refrigerate even though it just says doing so just extends the shelf life. I use Jarrow Formulas "Saccharromyces Boulardii+MOS", 5 billion per capsule and take 2 per day. It says 1 or 2 so I take 2. P.S. Exactly what Jan gave you the link for is what I use, maybe she gave me the link too. I'm having another brain fart [ more ]
Jan Dollar It is safe to stay on probiotics indefinitely, unless you develop side effects you don't like, such as excess gas. The Jarrows S. Boulaardi has MOS, but that is not really an additive. It is just what they call a prebiotic, which is food for the probiotic. Sort of like how Culturelle has inulin added. One capsule has 5 billion yeast cells. http://www.amazon.com/Jarrow-F...psules/dp/B0013OVW0E Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Help? Bulk but less control?
knitwittyknitwitty
knitwitty I tried reducing the amount of my Gatorade and it has impacted the acidity of my output noticeably (by lessening said acidity), but has made no impact on the liquidity of it. So for the sake of lessening the bum burn I am trying to drink as little of it as possible, at least for now, but I am getting pretty dehydrated without it. vanessavy: I am definitely dehydrated. [ more ]
grandmaof1 I only drink smart water or there are a few others that have electrolytes in there water and are cheaper. I know Target has there own brand. I know it is not much but that is all I drink and I don't drink anything else. I am sure it is better then nothing at all. Maybe that would be a good start. Hang in there. I feel your pain and your depression. I am a little over a year out and I am not sure if I like my pouch or not. I love being skinny again. Since I can hardly eat anything anymore. [ more ]
PolypsAplenty My frequency/control issues really didn't kick in until about a week after the take down. I wouldn't worry too much, I was definitely having plenty of accidents two weeks out (one particularly bad one in the car while driving hahaha), and at about 4-6 weeks after takedown, things got a lot better. Things will get better soon! As for metamucil, if you have a surgical RN, I'd ask what specific dosage and how much water they recommend. My doctors at Mayo have a specific recipe for me to follow... [ more ]
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J-Pouch ForumsGeneral Discussion
I can SLEEP!!!!
bootstrapbootstrap
TE Marie Congratulations Marianne! You guys are all great examples for everybody! Things we use to take for granted, like sleeping for example, are appreciated now. [ more ]
bootstrap Oh Marianne, that's so great! I hope it sticks!! Srf1, that's awesome. If your name is referring to surfing, that's something I've been wanting to do for a long time, too. Hoping to learn this summer! Thanks for all the support and kind words, everyone. You are all so sweet. I knew you'd understand. Kathy, thanks for always being so supportive - it was you and Marianne that helped get me through it. Liz, glad to hear you're hanging in there. [ more ]
mgmt10 Lol, maybe reading this post a week ago gave me some good luck. I have slept through the night the past 5 nights! First time since takedown 2.5 years ago! I hope it lasts....I haven't done anything different! [ more ]
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J-Pouch ForumsGeneral Discussion
VSL
J Jason4
Jason4 Yes, he confirmed it by a scope. Says the stricture contributed to the stricture b/c wastes was sitting in my pouch for long periods of time. [ more ]
vanessavy If I do mess with probiotics I take Florastor. Align might be affordable for you. My surgeon recommends Align. It is very rare with FAP you even get pouchitis. Was this confirmed by scope? [ more ]
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J-Pouch ForumsGeneral Discussion
Effect of chemotherapy on pouch
FM Former Member
vanessavy Chemo shouldn't bother you, maybe side effects of diarrhea that people with a colon can even get. Radiation is what can possibly be bad since it can damage the sphincter. When I was considering a jpouch when I was first diagnosed they wanted me to do the chemo and possible radiation first if I was beyond stage 1 rectal cancer after doing the ileostomy surgery. To hopefully prevent that from happening. [ more ]
Former Member Thank you all for the feedback. Very helpful! [ more ]
Donna H Justin, I had chemo 3 months after my J-Pouch surgery and it caused severe cramping and diarrhea for only one day. There was a delayed effect and the symptoms didn't start until about 3 or 4 days after the treatment. It lasted only one day and the rest of the time I was fine. I was working full time after awhile and had no other problems. Keep in mind however, that you most likely will be getting a different type of chemo but I just wanted to tell you about my experience. I don't think the... [ more ]
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J-Pouch ForumsGeneral Discussion
1 week post takedown - Straining?
M mom2panda
Lorsall I have been having tenesemus and straining and what I thought was constipation. I finally went to see Dr. Bo Shen at the Cleveland Clinic last week, and after an anorectal manometry I was told that I have paradoxical contractions. I have to undergo physical therapy with biofeedback to try and retrain the muscles to work in harmony. You are still really early in your recovery, but I have been having this issue since takedown three years ago. I have told two different C/R surgeons as well as... [ more ]
mom2panda Thanks everyone. I had a stricture before my takedown, but the surgeon did a big stretch during the takedown surgery, so I don't think that's it. I think it is from all the irritation. I emailed this morning and they said not to worry, I wouldn't do any damage to the pouch. I guess as my body adjusts, and the anus area becomes less irritated, this will improve. [ more ]
UCWarrior2010 I am three weeks out since takedown and though the urgency is not too bad in my case, I can usually delay going to the bathroom for a while though I feel uncomfortable, I often get the feeling that I haven't emptied the pouch and have to strain to empty it. I also had bad tenesmus when I had UC. I saw my surgeon yesterday and asked him if this could be caused by a stricture. He told me that he had scoped and dilated me at the time of the takedown so there was no point in scoping me again so... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis and Migraine
S SKadett
Subzeromambo I hope by now that you are feeling better. I have had migraines for many decades. I cannot take Flagyl because I ended up with migraines that did not respond to any treatment. My normal migraine treatment is sumatriptan, Benadryl, and Vicodin. I lose the vision in my left eye during a migraine become nauseous and extremely sensitive to light and sound. A headache is just very painful. During bad pouchitis episodes I take 1200 mg of Xifaxin a day. It is an extremely high dose but works very... [ more ]
SKadett My Dr. wrote me off work (office work) for a few weeks and advised me to avoid eye strain and stimulating environments so I've been living in the dark for a few days now and the head pain is downgraded from migraine to headache but it's teetering on the edge. I've also started having acupuncture treatments. - The pain is located on the left side of my head from the top of my teeth over to the top of my head, sensitivity to light and sound, resistant to most meds aside from NSAID's, they had... [ more ]
lhh65 Hi You are still on the Flagyl? I'm wondering if it could be from that. Just a thought. When I was on Flagyl, I had some really bad side effects, including severe upper back pain every day in the afternoon. Hope you feel better soon. As a longtime migraine sufferer, I know how crippling that pain is. Take care [ more ]
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J-Pouch ForumsGeneral Discussion
VSL and other probiotics with antibiotics
C clouseau
toobusy2clean My daughter is on VSL#3 double strength so that's like 4 regular packets. She's been on the antibiotics while on VSL and she says it works wonders. If she were not on VSL she would probably a lot sicker. I recommend you take it! Any other questions just ask! [ more ]
TE Marie If you take probiotics at the same time as antibiotics you have to take them 3-4 hours apart and some say you shouldn't take them at all until you finish the antibiotic, if you have pouchitis. If I were you I'd call Dr. Shen's office and ask before using them. I take VSL#3DS daily and when I'm on antibiotics but I've never been on them for pouchitis. [ more ]
vanessavy Antibiotics kill the bacteria in the Gut and probiotics replace so they are basically fighting eachother to work. I have the type of bacteria overgrowth that needs doses of antibiotics only when I am bad. I have tried probiotics and they make it worse for some reason. You might be different than me. Shen has never recommended both to me. When he gave me Lactulose to help grow healthy bacteria he said with that he recommends a probiotic but in my situation he had me do an antibiotic. It is... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Digestacure
K kk
kk I agree w/both of you. I figure it is best to post things on here and someone can help b/c of their knowledge or what they have experienced. I googled j-pouch and it is one of the topics that came up so if you do that you should see where I got it. Thanks for the replies! [ more ]
kathy smith Anything that claims to 'cure' everything from alopecia to ALS is a scam. Really? ALS? I would think doctors would be all over this if it cured ALS. And it ain't cheap either - $150.00-$160.00 per month. Yikes. kathy [ more ]
Jan Dollar Anything with "cure" in the name I am skeptical of. I have never heard of this before, but imagine it is some sort of supplement. Unfortunately, pouchitis and cuffitis is way too complex to be cured by any one supplement. These things might offer some relief, but I seriously doubt it could be long lasting. Can you give us more information about it? Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
bleeding
crick05crick05
TE Marie I always hated it when they said things were "normal", they sure didn't seem normal to me. I looked and your take down wasn't just a couple of months ago. If I were you I'd keep a log of what's going on. You could just have some small blood vessel breakage I guess but the frequency I don't know. It might help if you'd take an Imodium or 2 before bed to help with the night time leakage. You can always do Kegel exercises to strengthen your pelvic floor muscles to help with leakage prevention... [ more ]
crick05 Thanks so much for your advice. I heard from the doctors office today and they said it was normal and not to worry about it. If it continues I think I will force the issue and make an appointment to see him. [ more ]
TE Marie I see your frequency has increased, dah. Easiest thing to get checked for is the c-diff infection. That is checked with a stool sample. In any event please call your GI. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Baffled, need more choices
ConnieConnie
Connie Two different types of c. diff test were negative. He is still tired and sometimes nauseous, but the bleeding seems to have stopped. The NP at his latest orthopedic appointment speculated that all of it may still be after effects of the 17 weeks of antibiotics, which completely wiped him out while he was on them. In any event, things seem to be on the upswing today. Still in limbo with the foot. Infected hardware was removed, but healing is still incomplete. He'll give it a couple more... [ more ]
scallop Hi connie -- I haven't talked to you in a long time and I"m so sorry to hear Thomas is still having problems. All my best to you. Debbie [ more ]
Spooky kta - Thanks! It's been very discouraging not knowing what's going on. I really figured I'd have an answer by now, with this going on intermittently for over 5 months. I feel for Tom and Connie going through something similar. vanessavy - I collected the stool samples for the testing, but I'm not sure what method they used. I will definitely be asking my GI when I speak to his office next. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis and no relief from meds
resres
clouseau I have crohns as well and it's tough when you have pouchitis at the same time. My thoughts are with you. [ more ]
res I just got out of the hospital yesterday. I was diagnosed with chrohns in my jpouch. I have a follow up with Cleveland Clinic but not until June. I'm iron deficient which has my hmg in the upper 7s. [ more ]
clouseau I agree with Liz you are so close to Cleveland Clinic and Dr Shen that it would be great for you to see him. I feel so badly about your situation and do relate as I was going about 30 times a day until I got on cipro and tindazole,( like flagil). [ more ]
See all 10 replies...

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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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