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J-Pouch ForumsGeneral Discussion
13 Best Fodds for Crohn's Disease, Almond Milk
R Rocket
Rocket Thanks Marianne, The Rice Milk was the last thing I thought it was because I have been drinking Rice Milk for at least 15 years if not more. [ more ]
mgmt10 Glad to hear it's not a Crohn's diagnosis. It's amazing how something innocent like rice milk gave you so much grief. Hope you continue to feel better. [ more ]
Rocket Got my results yesterday. The CT Scan was negative and the doctor agreed with me that it was the Rice Milk giving me so many problems. Then he scoped me and all was clear so for now I am off the meds. Rocket [ more ]
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J-Pouch ForumsPouchitis
Flagyl question
V van
PDXDavid Van, The only problem I had on flagyl for 2 years (250 mg 3 times a day) was a candida yeast infection that was totally my fault because I completely ignored any preventive measures that would have easily prevented it. Now, that doesn't mean everyone will have the same good luck that I had with it. In the absence of known intolerance (which you have not indicated), I wouldn't be overly concerned. Yes, it's best to not require antibiotics, but there are a lot worse things. Hope it turns out... [ more ]
Jan Dollar Why the dread? Do you have intolerable side effects? I feel pretty fortunate that I tolerate it pretty well. Other than the funny taste in my mouth, I had no issues with it and I was on it 3 times a day for a couple of months at one time. Jan [ more ]
van Thanks for the information. I last had pouchitis 2 years ago. So I guess that could be why. I just dread being on flagyl for another month even if it is alternate days [ more ]
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J-Pouch ForumsGeneral Discussion
Tired of fighting Pouchitis
LZ Lora Zwart
suebear I guess you have to ask yourself if you want to continue taking medication? There are many pouchers on this site who have given up their jpouch because of chronic pouchitis, and gone back to an ostomy. None of them have regretted their decision and they all say they have a much better quality of life. Sue [ more ]
CTBarrister That is probably all good advice. I certainly would not give up after trying only one or two antibiotics having adverse effects. In my current rotation in which lactulose and xifaxin play key roles, I take cipro or flagyl only one week per month. Most of the members in my CCFA support group are taking biologics to treat IBD, and they report success with one biologic after another has failed. My GIs have mentioned Remicade in conjunction with treating pouchitis, although they have... [ more ]
Scott F You've been through a lot, and probably tried a lot of things. I'll offer some possibilities I didn't see in your post, just in case they were skipped over, or not tried aggressively: 1) Most antibiotics are entirely different chemicals from one another. They do not all have a propensity to affect the liver. Are there perhaps some good, safe candidates you haven't tried simply because they're called "antibiotics?" Xifaxan, for example, would be a very different choice. 2) I take a *lot* of... [ more ]
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J-Pouch ForumsGeneral Discussion
Major life decision
K kecknickn
Grug I too am facing the decision to J or not to J. I have had the bag for 22 months without any problems other than severe pain from time to time with the rectal stump. This is about to be removed, but with it also will be my chances of having a J pouch. The stoma and bag have served me extremely well and I am concerned that by attempting the J Pouch will introduce a whole new series of problems and issues. The decision not to J I understand would be final. I really am struggling with the decision. [ more ]
kmj I had my j pouch removed 7 weeks ago. It was a tough process but I am doing very well now! I have to deal with my new appliance which can be a pain but at least it is on my terms. Can't say the same for the 7 years I lived with chronic pouchitis. My favorite thing is sleeping all night long now! I used to get up sooo much every night. You will know when you get to the point that you want to live your life, I did and now I can : ) best of luck! Karen [ more ]
chiromancer Seems like you answered your own question. If the ostomoy gets you out of continual pain and hospital stays it would seem silly not to go in that direction. I gave up my pouch at about 18 months and my issues (primarily incontinence with butt burn) while affectinhg the quality of life sound much less severe than yours. The end ileo has been far better for me than the J and I basically do anything I want to do. Why suffer? [ more ]
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J-Pouch ForumsGeneral Discussion
Link between 'pouchitis' after ulcerative colitis surgery and changes in gene express
C cassiecass
cassiecass Thank you I will look into this.I am just a subway ride to Sinai Cassiecass [ more ]
CTBarrister They are doing this genetic testing at Mount Sinai Hospital in New York City from what I have been told. [ more ]
TE Marie Thanks for the article cassiecass! I too had diverticulitis pan colon along with UC pan colon so had the surgery. How expensive is it for them to do the genetic testing on us all to find out where we stand in the continuum? They do biopsies but that's not the same thing. Has anyone had the sort of testing discussed in this article? I sure would like to volunteer to be in a trial of some kind or even pay to have the testing done myself. [ more ]
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J-Pouch ForumsGeneral Discussion
From J-pouch to K-Pouch, BCIR or end ileosotmy?
HH Holly HM
Holly HM Thank you. [ more ]
liz11 Congrats on making a decision and moving forward. Sometimes that is the hardest part. Best wishes with the surgery. You will feel so much better once it is done and you have recovered. [ more ]
Holly HM I think what would be better for me is to remove my pouch totally and go to an illiostomy. After the last two years of leaking and having vomiting and diarrhea, I am sick of it. Apparently when I get almost blocked because of the strictures, it causes those symptoms. When I had my original surgery it was because of a blockage that almost killed me. I don't ever want to get that sick again. The surgeon says it is better to have the surgery now while I am healthy and can tolerate it easier. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
what's happening!
N nicole489
13 Years & Counting Nicole 489, Have you been able to see a doctor yet? Perhaps the course of Cipro wasn't long enough as Spooky indicated. I can't take Cipro, so I use Flagyl, but sometimes I need to be on it for 14 days. I've had my J-Pouch for 14 years with very little issue until December, 2012. Now dealing with narrowing at the inflow area & strictures in the rectum. If you haven't been seen by your GI doctor yet, I think I'd try to get in to see a different doctor...call your GI's office & tell... [ more ]
Nroley I have all those same symptoms and I have a stricture. [ more ]
nicole489 Thanks for the advice! Still trying to get a call back from the GI's office. And Lesandiego, I can still drive the stick-shift! I actually have one. But some days it's not so fun... [ more ]
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J-Pouch ForumsGeneral Discussion
Update: from Jilly & Life is soooo Bad
JillyJilly
Laurie49 This is wonderful news, Jilly!! Stick with the plan that works and the doctor who prescribed the cocktail. After 12 long years, you know what's best! Huge hugs! [ more ]
TE Marie I need to remember the Canasa for my cuffitis too. I was in denial when I was finally diagnosed with UC, even after a stern talking to from my GI telling me I didn't realize how serious my condition was, it was pan colon. I did let him put me on a heavy course of prednisone for 6 months. I kept on with life and working and doing everything I did before and more, with 2 teenagers, husband, my own business, volunteering the whole 9 yards. That's when I got slapped down by fibromyalgia. Then I... [ more ]
Jilly TE Marie, It took them 12 years to find just The Right combo of drugs. I don't know if I'll flare the second I eliminate just a portion of one of the three pouchitis drugs I'm on (Flagyl, Cipro, and Entocort). The game plan is to have me start the taper next Thursday. Who knows what will happen? My point to you? Keep fighting for better health! Don't just accept your "lot in life" as one filled with pain. And I guess I should also remind you to listen to the Mayo docs!? Hell yes, you should! [ more ]
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J-Pouch ForumsGeneral Discussion
Well, Jan was right.
P PDXDavid
TE Marie I hope all goes well during your surgery and am a little jealous as I'd like to ditch my cuff. Best wishes for your surgery and yes, Jan is always right [ more ]
suebear Jan is always right. Sue [ more ]
skn69 I am so happy that this is working for you David...keep us posted on what they are doing and how it is working for you... I need one of those doctors here...am going nuts with the pain and have no idea how to get rid of it...Not at all sure that they do that here...they just throw a scipt for codine or opium at you and watch you float away... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Panic after injecting.
ManchesterManchester
Jan Dollar There's blood vessels all over the place, but no major ones in the sub-q. Plus those needles are very thin, like insulin syringes. But, if you hit a little vein, you can't just put a BandAid on it and forget about it. You need to apply pressure for 2-5 minutes. Jan [ more ]
PDXDavid Ahhh... I pictured a standard hypodermic needle. You wouldn't think there'd be big enough blood vessels near the surface, on the top of the thigh, to cause such dramatic bleeding. . [ more ]
Jan Dollar Humira is a subcutaneous injection, and if you use the autoject pen, there is no drawback of the plunger. With my Simponi, even without the pen, I cannot drawback on the plunger because of the syringe design. With subcutaneous injections, this is less of an issue. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
HGH for fistula & chron's
SA Sydney AZ
Jan Dollar I would think that the problem with the studies you show your doctors is that they do not necessarily translate to your case. I did a search at http://clinicaltrials.gov/ and it appears that the only current studies with HGH and Crohn's involve the pediatric population, not adults. THAT may be your primary problem. I found the same issue with PubMed searches of published results. There actually isa great deal of research going on regarding IBD. I know it would be wonderful if it was a simple... [ more ]
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J-Pouch ForumsPouchitis
cipro drugs
H hails1
Robert1 Hi there, Please be very careful with cipro, its a good drug for pouchitis, but it has serious side effects, it finished up giving me C.difficille,which is life threatening if not treated, and the symptons are so simular to pouchitis. You cant be tested for c.diff whilst on cipro, I read so many blogs on here about c.diff and i kept thinking my surgeon as never mentioned it to me , this was until i had to see another surgeon, told me to come off cipro and get tested for c.diff, it came back... [ more ]
Spooky Hi There! Any walk-in should be able to prescribe an antibiotic, and it should not take long to get the prescription filled. Often for pouchitis, you would be prescribed both cipro and flagyl - usually 500 mg of cipro and flagyl 250 3x day. That being said, my experience with walk-in clinics is that the vast majority have NO CLUE about j-pouches, and you would have to be really specific with why you need the meds. That being said, is there any reason why you can't go through your own doctor? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vaginal -- Pouch Fistula
Y 20 years
n/a Yeah, I've had my pouch since 1993, and developed a pouch-vaginal fistula in 2010. You can do a search to find my details, if interested, but in a nutshell, I've gone to Cleveland Clinic, saw Shen, he tried a few things which sadly did not work. He sent me to a surgeon up there who placed a draining seton in 2012. Still have the seton, only viable surgical options are pouch re-do or pouch removal. Will probably stay with seton until something occurs which forces a decision. PM me if you'd... [ more ]
vanessavy I'd see Shen at Cleveland Clinic [ more ]
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J-Pouch ForumsMen's Health
Weak Urine Stream
T TSM
Nomoremeds Clearly the pouch does affect urine stream. I know it did for me, as it is much weaker now. [ more ]
lovedby2 Since my takedown in October 2011 I have always told my GI that it seems so hard to pee. I have to push really hard to go pee, which in return makes a bowl movement. So basically I pee only when I need to move my bowls. Dr has only suggested that it my be inflammation pushing against the bladder causing it to not evacuate accurately. [ more ]
Atop Hi TSM I've had my pouch for 25 years and the last 4-6 years my stream has become very weak. I am on a good deal of medication including oxycodone which my urologist feels is. Partial cause. Main problem is that the pouch and bladder are closely located and when I try to urinate it triggers the pouch to evacuate. I'm 47 and considering removing he pouch as I've Been struggling with pouchitis for a long time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Family help
A Allin
Allin Thanks for your advice it was all good going to put it to use [ more ]
PDXDavid We tend to place a harsh burden on ourselves. Dark thoughts that our relationship issues are caused by our illness, so we are to blame as "damaged goods." From the cold sociological/biological standpoint, our relationships have to overcome evolutionary hard-wiring which makes most humans (most animals in general) seek out healthy mates. You'd be surprised how close we are to our primitive ancestors in many things, even though we look at ourselves as enlightened and above the animals. That... [ more ]
TE Marie I've asked my husband to read articles before and forwarded them. I found out I need to print them out and specifically highlight the important areas for him and sometimes sit down with him while he reads them to get him to read them. I don't understand why. If it were him I'd be researching everything on my own. that's just the way we are. He also forget things and I need to remind him. I have several medical problems so I try not to walk around with the daily medical report detailing all... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need Advice
XenophonXenophon
Rocket Hi Xeno, I feel really bad for you and I know what it is like to suffer so much you just want to be able to live your life as you want, but cannot because you are only able to do things what your health dictates, especially in this early stage. I am not sure you are a candidtate for this but there have been tests for a procedure called Fecal Tranplant. I have attached the link to it. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365524/ Again, I am no authority on any of this stuff so you... [ more ]
phonix2g Hey Xeno, this is a big and tough life changing decision you are looking to make and as it is good to look for some guidance the ultimate decision comes down to you and if this decision is going to be the right one for you. There are people that will tell you to stick it out and others that would rather take the path of least resistance and not have to deal with the issues you are dealing with on a daily basis. I had my takedown in March and have been on LTD and looking to go back to work in... [ more ]
TE Marie I agree with Scott and see a lot of buzz words in your post like, "c.diff and pouchitis". I suffered with c.diff, IPS and cuffitis. They all have similar symptoms and are hard to tell apart. The longer one of these goes untreated the harder it is to get rid of. I don't know when you were diagnosed with what and where you are in the treatment(s). Are you suffering incontinence because you still have c.diff, was it caused by it? When was your last pouch scope? What do the professionals at the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need help
V vgirl
Jan Dollar The most important lesson I learned in my nurse's training was to listen and acknowledge. Patients are in an abnormal circumstance and at the mercy of their caretakers. We cannot tell them what to do or what is right, but we can listen to what they are expressing and acknowledge what we think they are trying to tell us. If you can't figure it out, it is OK to say that you want to help, but don't know what is wanted. Having been on both ends, I can say that just knowing someone cares means... [ more ]
jeane Steroids will make anyone off the wall let alone chronic illness and continual pain and discomfort. Unfortunately for both of you, it sounds like your spouse has been through ALOT. Your spouse is angry at his situation,not you. The anger is misdirected at you as you are the closest person to him. If he has had jpouch surgery, this is a very difficult experience for most people and if he has troubles after the surgery as many of us do or have, it can make getting along with anyone difficult. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy advice
K ksmarisa
jeane Ditto what DJB has said. I have had several pouchoscopies in the last two years and they are nothing to get alarmed about (much easier to prep for than colonoscopy). I would not even get alarmed if they see some inflammation in your pouch as most pouches have them. I also have a couple of small ulcers in mine, but manage on and off cipro due to some ongoing pouchitis issues and I have ongoing inflammation in my cuff also that is being watched. Make sure you ask for a report and pictures. [ more ]
CTBarrister They are looking for ulcers, inflammation and will biopy your rectal cuff which is where cancer would most likely strike, since it is the one part of the diseased organ that is left in. If you were a dysplasia case pre-colectomy, it is imperative that the rectal cuff be biopsied regularly (I have been told annually for those like me who were dysplasia cases pre-colectomy). Make sure you do the prep and are clear. Good luck. [ more ]
PDXDavid Kate, I've had several pouchoscopies in the past 2 years. In fact I have anouther one day this Thursday. Without exception, I wake up from general anesthesia with no pain from the procedure, and walk out feeling as good as when I walked in. So far, no pouchitis - just some irritation near the cuff, which they feel is from not being able to empty the pouch thoroughly enough due to stricture. They will probably take biopsies to take a close look at the cell structure, which gives them a good... [ more ]
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J-Pouch ForumsGeneral Discussion
jpouch makes a lot of noises
N neosapphires
PDXDavid This reminds me of when I had my ileostomy for 10 months before take-down in October of 2009. I shared a workspace with 5 other graphic artists, and when I got back to work (had colon removed on a Saturday morning, went back to work that Wednesday), I discretely told each of the 5 people that because I had my colon removed, I had a temporary medical device attached to my stomach that might make strange noises. At the end of that day, I learned that one of them - a female - complained to HR... [ more ]
phonix2g I think your gonna have quite an issue trying to control those bowel noises. Sure making sure your eating stuff that is not as hard to digest or produce less gas is the way to go but I've had bowel sounds when I had a healthy colon years ago. I think unfortunately you are stuck and a lot of people would think eating earlier will help with that issue also but I've found from experience that my stomach start making more noises around bedtime because my stomach is looking for food to digest and... [ more ]
mgmt10 I have had my j pouch for 3 years now I have not found a way to quiet the noises. I am sure it's a fine balance of diet since certain foods may make you more gassy. I'm not willing to change my diet because it doesn't bother me that much but you may want to try eliminating some things to see if it's something you are eating. I have heard people post here that say taking probiotics help. The noises do however come with the territory now at least to some degree no matter what you do. After... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown a little over a week ago. Worried I have a partial food blockage
A anuke76
anuke76 Ok so this is tmi but my bm's look like stringy mucous and I have developed a headache. I have been using heating pad and stuck to chicken rice soup for lunch. I am just nervous but don't know if I am just being paranoid. [ more ]
Pluot You might have a partial blockage at the old stoma site, everything is still quite swollen from the recent surgery so this wouldn't be unusual. As long as you continue to have BMs and you aren't nauseous it's OK to keep eating, but I would switch to a soft diet until you feel it's resolved (yogurt, runny oatmeal, soups, etc). You can also try very gently massaging the area, a warm compress, walking, and laying on either side. [ more ]
anuke76 It was a grilled pork cutlet. I did have a bowl of rice krispies for breakfast. I am not nauseous or throwing up. I am still going but noticed movements are a little bit different. Still experiencing those weird pains periodically. [ more ]
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J-Pouch ForumsPouchitis
Gas after stopping antibotics?
U 1970UC
Robert1 Hi there, Please check for C,diff..your symtoms are so simular as mine, you cant get checked until youve been off cipro for 2 weeks, Gas cold fever diarrhea are all symptoms of C.diff and pouchitis. [ more ]
PDXDavid Bacteria are recolonizing the gut after having been killed off by the antibiotics. IF you take good probiotics like VSL#3, the good bacteria will overwhelm any "bad" gas-producing bacteria. [ more ]
Leftie Is the gas noisy and loud so that people around you can hear it? Or is it just uncomfortable? [ more ]
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J-Pouch ForumsPouchitis
Just out of curiosity...
SpookySpooky
TE Marie Spooky I am having this problem in a bad way the last few days. I was taking Loperamide as needed for runny BM and doing ok but didn't need it so stopped. I always kept going but it was better, hurrah, right? I've been on the same diet and I've gained 3 pounds and have worse abdominal pain than usual. I'm not only in cramping pain but it feels sore too, does that make sense? It can't be a partial blockage as I am having good looking BM's, passing gas and all seems normal, except for the... [ more ]
Spooky Very interesting! Thanks for the responses. That makes a lot of sense with respect to the mechanics of the bowel. I think I am clearly very sensitive to inflammation. [ more ]
vanessavy Everything starts in my gut. I had most of my stomach removed so for me I have digestion issues. I can feel chocolate move through me in every part of my digestive tract. Weird crap. Anyway, some foods for me are just pure liquid. If I eat pizza it is just green liquid that comes out. Then I have days where I don't really poop for 2 days and don't do anything different. I have a continent pouch and haven't had pouchitis, just SIBO and cdiff. [ more ]
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J-Pouch ForumsPouchitis
Ulcers in Pouch the same as cuffitis
H HeatherPyle
TE Marie FYI Most j-pouches these days are attached to the rectal stump using the double staple procedure vs sewing it to attach. In the double staple procedure approximately 2 cm of the rectal tissue is left at the stump to staple the pouch too and they use 2 staples. It is weird seeing them during a scope as they seem huge on the screen. In the hand sewn procedure they usually do not retain any of the rectal cuff and therefore patients do not get cuffitis. This procedure makes the patient more... [ more ]
PDXDavid The cuff is the residual colon, just north of the anus, that the pouch is sewn to. Cuffitis is essentially leftover colitis, limited to what is left of your colon. . [ more ]
Jan Dollar It is essentially inflammation in the retained rectal cuff with the j-pouch. Basically, UC, and treated the same, but mostly with topicals. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Message for FUTURE J-Pouchers
P PDXDavid
Cataja Love that Jan...! [ more ]
Scott F It's certainly true that satisfaction rates with J-pouches are much higher than you'd think if you just read these forums. OTOH some things that happen with J-pouches aren't uncommon, and folks ought to be prepared for them. For example, antibiotic-dependent pouchitis is common and quite manageable. If someone convinces themselve that daily antibiotic use is unacceptable, or a "failure," then they sure might be disappoinited. [ more ]
kta When I knew I needed surgery, I think I read every post in the archives. Instead of scaring me, it prepared me for what to expect. This board made the choice a lot easier because I felt armed with information. It helped me interview surgeons and, as best as it could, prepared me for that challenging first year. [ more ]
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J-Pouch ForumsK-Pouch Korner
Indwelling Catheter - Valve Slippage
A AlexanderC
Edee Hi Everyone, it's been 3 months post op and after quite an optimistic start it seems its all gone down hill. Well, ups and downs but mainly downs. I had a pouchogram on Tuesday - where they inject dye via cath and pouch showed to be healthy and no problems. I inserted the cath myself - no problems and again an hour later - no problems. Then Wednesday it was more difficult to get in. It used to be where it would get stuck a 1/3 way in and Thursday morning it got stuck half way and I tried and... [ more ]
skn69 One can lead to the other...if your pouch is unthethered (ananchored) then it can 'twist' the valve when you move around (I cannot lay on my left side, makes my pouch flop right over...and it hurts like crazy when it does)...if it is down it can pull on the valve and pop it open and cause sudden leakage that you might not have otherwise...I had both the pouch down and a hernia and it twisted up into the hernia (don't ask how, I do not know)...thet got me emergency surgery with my surgeon on... [ more ]
Edee Hi Sharon, Thanks Sharon, I wondered that too...I mean why would it be fine to access lay down but not so stood up? Must be positional or valve....or knowing my luck both! lols... Soon find out. Rachel [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Tummy tuck
S sally85
skn69 Sally, I think that I answered this post or another similar one on the general section...but there is no reason why the surgeon cannot reuse the same scar or even take advantage of the c-section to reduce the mess and make you a pretty abdomen at the same time...they can recreate belly-buttons too...here there are a couple of hospitals and private clinics (very chic, very expensive) that specialise in a 3in1 c-section...they birth your baby, give you a tummy tuck and pull it all together at... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recent J pouch surgery
SD Susan D
TE Marie Susan, I'm so sorry you have to go through all of this, it sounds horrible. You aren't going to like my opinion but you are under the care of two of the best doctor's in j-pouches so I'd take their advice. I personally would have a problem with going to an ileo and back because of the probable abdominal adhesions from both of the surgeries. After I had my takedown I didn't feel like eating much as it caused a lot of movement/pain in my abdomen and I wasn't hungry. Only you can determine if... [ more ]
Susan D Figured I'd give the update. Five weeks post jpouch surgery I am at Cleveland clinic to try to figure out why I would eat anything and feel constipated and could not have a productive bowel movement. Turns out I have a twisted pouch and a prolapse from straining. Dr Shen and dr Renzi both think this was possibly caused by stapling improperly. The problem is now that I can't eat at all. I'm on TPN for nutrition through the picc line and the surgeon would rather me wait six weeks for more... [ more ]
Mental Kase Susan D, Right after surgery I found that my muscles and nerves were not quite in sync, and I felt unable to access the correct muscles to evacuate properly. There was also a complete lack of satisfaction if that is the right word, the entire experience felt detached and no longer productive. The more I strained the less came out. The muscles I was activating seemed to be closing down my anatomy instead of opening it up. Eventually after about a year of frustration I settled into a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula surgery
J Jpoucher4life
PDXDavid Well, I'm going in next week for exploratory on the fistulas. The doctor said he is leaning toward a plug, but he isn't ruling out other procedures once he gets in there and sees what's up. He talked about lowering the cuff into the anal canal past the fistula opening, but that was a distant possibility. Luckily, my fistulas are not through to the pouch, but one into the anal canal, and the rest in the right buttock. I basically gave him carte blanche to do whatever he sees fit, so I don't... [ more ]
Ginabello Hi.. I have a seton in place to control a perianal abscess that kept filling and discharging.. My surgeon put a double seton and tied it in June.. All has been good since I would be fine with keeping it in.It seems to be a lot more loose and I'm thinking it is coming undone is that possible? I will call tomorrow but am getting a little worried and would appreciate some feed back please! [ more ]
GinLyn There is also a new technique for RV fistulas currently being worked on here in the Netherlands. I've written about it before, so if you search for my earlier posts you'll find a description. I was one of the first 10 women to have it done. So far the full success rate (complete closure, obviously it does not prevent new ones forming) is running at 80%. This is better than the estimated 50-60% success rate for the methods (excluding the LIFT, I don't know stats for that) currently used in... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis? and probiotics
V vince
AP I'm not on here much these days because since I started taking psyllium fiber over a year ago, I stopped getting pouchitis regularly. I take it loose and mixed with water about three times per day. I like to get on here once in a while and let people know that this worked for me because I heard about it on this forum and want to pay it forward. The tricky part about all this is that there is no one "fix" for everyone. I just feel compelled to share mine in case it might help someone. Also,... [ more ]
PDXDavid Personally, I've been remiss in keeping up my VSL#3 use. During the long period of no insurance before disability was approved, I was burning through my 401k like mad, so I trimmed down on anything I could, and VSL got the axe. I've been taking it more of late, but not consistently. That probably defeats the purpose. I must resolve to make it a priority. . [ more ]
Jan Dollar No, it is not necessarily an infection (but it can be, such as those caused by C. difficile or cytomegalovirus). It is more of an IBD sort of thing, since it rarely occurs in those without IBD. Antibiotics work because the inflammation is from an autoimmune response to the presence of too much bacteria of certain types. At least that is the theory. People with IBD tend to be underpopulated with the "good" probiotic bacteria, and that is what is behind the theory of using probiotics to... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch issues
F fishon
TE Marie PDX David, There are many people on here who have gone back ileo's while resting their j-pouches. You might want to search for those discussions. There are several people in the FB support group that have done so but I can't remember their screen names on here. Better yet might want to start a new topic on this and you will receive responses from those who have done so. It's a good question. [ more ]
TE Marie fusion, I am in no way ready to ditch my j-pouch. I've learned how to control my problems. At first my local doctors didn't know how to diagnose and control them. There are people, many on here, living with more problems and taking more medications than I am. Many of those with chronic pouchitis constantly rotate antibiotics. Since my Mayo GI diagnosed me with IPS vs Pouchitis I take antibiotics much less than I was. Since I have gotten my c.diff under control I don't take antibiotics for... [ more ]
chiromancer What you say is true, though I personally had no problem with my loop which made the prospect of going to an end ileo a much easier choice. I could have lived with my loop and my end ileo is better. The problem as I tried to explain with the end ileo pouch left in place is the excretions, I thought they would be no worse than what I had with the loop, the typical mucus that many complain about. That was not the case, The pouch is basically starved for nutrients ( I believe a certain amount... [ more ]
See all 37 replies...
J-Pouch ForumsHelp! Need advice now!
9 months out and still 15, 25 trips to bathroom daily
J jalex
PDXDavid jalex, My surgeon used to be with that group. Dr. Frankhouse. When I had my colon removed, he was with them. Since then, he has moved to Legacy Oncology Group at Good Samaritan Hospital. Although they specialize in cancer, his "legacy" UC patients continue to see him there. . [ more ]
TE Marie Linda, I pray your doctor is wrong and your prognoses is brighter. How many rounds of chemo do you need this time? I know it's more complicated that this but am perplexed. Why didn't they find your lung colon cancer until it was so advanced? Horrible news. [ more ]
jalex oH, AND I LIVE IN A SMALL TOWN OUTSIDE BEND. MY GI DOC IS SIDNEY HENDERSON OF BEND. DR LEE IS MY SPECIALIST FOR COLON REMOVAL AND NOW CARE AND ISSUES W/ JPOUCH..j [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Cipro and Pouchitis
A Av8erchic
Robert1 i took Cipro for years, treating pouchitis, now ive just been diagnosed with c.difficile, because of the cipro, just stating, be carefull. [ more ]
Scott F Also: congratulations on finding a doc who can provide decent care even when the appointment schedule is clogged. Your appointment will be much more productive with the information you're collecting this week. [ more ]
Kia Excellent! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Long Term Disability
P Pkitty
Mental Kase Back to the original Poster, Regardless of what your new prospective employer knows, or is told, or discovers about your previous employment -you will still need to proceed with the interview process and all of the other topics that will need to be discussed. I would advise, clear your head of all that can't be controlled, concentrate on what you need to do in the interview to get the job. Reply to what you are asked on the LTD subject with the least amount of information you can get away... [ more ]
Lesandiego Thanks for the free legal advice CT, but I am not trying to hide anything from LTD, I have already won my appeal(without the need for an attorney), as it was the right and legal thing for LTD to continue my disability payments. All of which I am sure is well-documented in my file. I also did the right and legal thing by informing my LTD carrier that I obtained part-time employment when I was able to start actively looking for work regardless of my ongoing medical conditions. I am getting... [ more ]
Mike H Pkitty, if you post on Facebook or any other social networks or websites that you have a disease or any health issues and are on LTD it is fair game for the company hiring you and trust me they all check the social websites. I had severe UC and now I have a J Pouch and am loving life again. A life on LTD or a J Pouch is an easy decision for me. [ more ]
See all 25 replies...
J-Pouch ForumsGeneral Discussion
lets play the NAME GAME!
K KeepFighting(Manny)
phoenix08 I named my ostomy Miss E (for Miss Elimination). My daughter thought I was saying Messy which she was! I just call the jpouch - My pouch - but around period time, I always say it's being "pissy" (sorry!). The ostomy was a female, but the pouch rates only as an it. [ more ]
SteveRM I don't have a name for my pouch, but I called my stoma, "Little ****". Sorry for the cusing. [ more ]
skn69 My best friend from back home has had coversations with me about George, in public, for years...we don't even realise it until someone asks us if George is one of our kids! (gives you an idea of the context of the conversaion!) Once I was asked how old my son was and why I had so much trouble potty trainning him! Sharon [ more ]
See all 14 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy & C-Section After J-Pouch
P pfundymama
pfundymama Thank you for the in-site. I had a C-Section with my first daughter due to a weak heart and my surgeon not wanting to risk any tearing to the anus or rectum for my future J-Pouch. I switched my OB today after finding out my Surgeon does not practice at any of the hospitals she goes to and having him in on the surgery is the biggest thing. I mean anyone can do a c-section but fixing a knicked or damaged pouch is up to my colorectal surgeon. Has anyone every had to go back to the Ileostomy... [ more ]
clz81 also, yes, as you are in the 3rd timester, increased pressure is very common. it's difficult at this point to know if it's just extra pressure or pouchitis. pouchitis is common during pregnancy. you can discuss with your GI if he/she suspects and you can take a course of either flagyl or augmentin to help clear it up. [ more ]
clz81 what sort of delivery did you have with your daughter? if you had a vaginal delivery that went well (minimal tearing, small to average size baby, not very long pushing), you could consider that instead of a c-section. i had my daughter naturally pre-pouch and had a very easy delivery with my son post-pouch. however, if you had a c-section already, that will likely be your preferred route this time. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Thank you all
C cassiecass
Jan Dollar The response will vary from person to person, depending on the type of pouchitis they have, so there is no one right answer. I recommend you read this comprehensive article by Dr. Bo Shen first to see if it answers your questions. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/ Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Just trying to figure things out....
P phonix2g
phonix2g Yeah Im not surprised about anything with the good old J. Ive seen a lot of stories of people who have got multiple dilations. If that is the worst of my issues I will take it. You have also told me about your dilations but you, I was gonna say "manned up" but you "ladied up" and got it done in the office which I refused to do and will continue to refuse to do if I need to have anymore done ha ha. [ more ]
mgmt10 It was probably a combo of your dilation results, the wheat thins nacho style and the warm water from the bath that led up to that mega release of gas. Don't be too surprised if you need to be dilated again. I had to go five times. Hope you keep feeling good! [ more ]
phonix2g David, I've always had the ability to pass gas and I usually take baths on a daily basis. It is easier either on my right side or stomach being the best most likely cause the gravity contains any stool that would be following. I can also differentiate between stool and gas. This is a trick I wanted to learn early in the game so I could get rid of that uncomfortable gas when I needed to. It didn't come without its consequences in the beginning but practice makes perfect so I was willing to... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Upper Endoscopy & Flexible Sigmoidoscopy
G grandmaof1
grandmaof1 Yes, it is over!!!!! I did the second prep with 1/4 left over enema and warm water. That was so much better. He said I was cleaned out and that everything look great. I got pictures and the best part. My surgeon was there also and got to see it. So I got double the treatment for the price of one!!! My doctors are so awesome. How neat for her to see how well she did and how well it is working out. Now the waiting game for the results. I go back in November. Praying for the best But aren't we all. [ more ]
grandmaof1 Thank you so much. Today is the day. This darn prep is something else. The first one is the enema and I am going to switch to warm water. Thanks again everyone. It is amazing to have all the support. [ more ]
skn69 Hi Granmaof1, Just a wish for good luck and good results with your scopes. Let us know how it goes and what they say. Sharon [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
rash/burning pain/itching
K kk
Jan Dollar Yes, my eczema definitely kicks into high gear when I have pouchitis or anything else going on. Jan [ more ]
kk thanks Nicole. I have had pouchitis a lot. I took flagyl but had side affects so now give cipro. I had heard of a rash related to UC /but person looked at it/said it didn't look like it. mentioned it to a surgeon/said the rash is for Chron's not UC. I started taking the cipro about a 1 1/2 wks b/c of symptoms of pouchitis w/one being aching like flu. thanks for telling me your experience. I had never heard about a rash as one symptom of pouchitis. It has only been 2yrs since rash appeared... [ more ]
nicole489 I know you said you are taking Cipro for pouchitis. The first time I got pouchitis I had no stomach symptoms. I got this awful rash, looked like big red wheals on my shins, which spread to my thighs and then up. It was the itchiest thing I have ever had. I was so tired and achy I would drag myself into work and then have to open the drawers on my desk to prop my legs up on as lifting them up seemed to be the only thing that helped a little. They also felt like they were on fire all the time! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
2 weeks since takedown, I love it
S Sburr17
Sburr17 DougF, I had my procedure at Brigham and Woman's hospital with Dr. Goldberg. He is great, from the time I saw him in the hospital when I was admitted months ago, to my first surgery, to my takedown he was available to me. He gave me his home cell phone and said to text him day or night with questions/issues. I can't say enough about him, never mind the fact that both surgeries went off without a hitch. Best of luck if you decide to go with the J-pouch. I have no regrets about it so far. [ more ]
DougF Seth, where did you have your procedure? I'm from Boston and have been at MGH with Dr. Sylla. [ more ]
Peaches So glad to read your story! My husband is 5 days post-takedown and so far it's been better than we were braced for. I know much could happen &/or change, but right now it's been such a blessing! And for the first time in 1 1/2 years, he's not itching like crazy around his wafer! That in itself is huge! Enjoy that trip!!! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
cuffitis, meds not working
Akk3769Akk3769
Nomoremeds They leave in a little bit of the cuff to have something to attached the pouch to. Doing a mucosectomy increases the likelihood of incontinence, so many surgeons will leave it with the hope that it will not be a problem or can be treated topically. [ more ]
Akk3769 Nomoremeds- I don't understand why they don't do this in the first place. I as well go to Cleveland Clinic. My surgeon was Luca Stocci and I see Dr. Shen. [ more ]
Nomoremeds I]Now when you say surgery, what do they do for it?[/I] I am not exactly sure, as it largely depends on the nature of your condition. I have a consult at Cleveland Clinic about it but not until November. From what I understand, they can do a mucosectomy, which involves removing all the infected mucosa. They then "advance" the pouch and sew it back to the anus. I've uploaded an article (link below) that may be useful in helping to understanding this procedure. Feel free to let me know if you... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Fecal Transplant
L LisaT
cassiecass There is an article today on Medscape titled Fecal Transplant Pills for C difficile Youmust log on to read it Cassiecass [ more ]
Pkitty Yup you are right Steve. But I cannot find anywhere whether this is even approved or if people can try it? I am sure a lot of people with IBD would love to give this a shot. [ more ]
ElmerFudd Come on David - it's only like 24-30 pills at one sitting And they're triple-layered for digestion in the colon (I guess they would have to custom-make double-layered pills for those of us with j-pouches). Pkitty - I have not read they are isolating the good bacteria. I believe they filter out the particulate matter, and I read they also make sure there are no pathogens (parasites, bad bacteria, etc.). So in that sense they isolate the good bacteria. But besides the known offenders like... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
CC appointment and surgery scheduled
S Subrew
TE Marie I don't think anyone should assume they will get cuffitis based on them having UC in their rectum. I believe most of us had UC in the rectum as that is one of the most common places it starts. I believe doctors look at the pathology of your UC and other factors when determining what kind of surgery to perform. The reason why the double stapled procedure is the most common is because it is the "most successful" and as I said before I probably would have still had the same surgery all over... [ more ]
Subrew Fishon, if it helps you any. I've had cataract surgery in both of my eyes and I see GREAT!! I wish I had it sooner. No glasses nor contacts. I appreciated your replies. Thank you [ more ]
fishon Subrew, When I had my colon my rectum would hurt so badly the only thing that really helped was a sitz bath of warm water. Tylenol would not even dent the pain. I think the hand sewn pouches may have a slightly greater chance of leaking, but double check. My wife and I now wonder if there is information out there regarding location & severity of UC in relation to cuffitis issues & severity of plus resolution. Hind sight. Due your due diligence, but don't over think yourself into... [ more ]
See all 13 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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