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J-Pouch ForumsGeneral Discussion
Anyone had a successful J-pouch completed in 1 step?
S ShannonB
Pouch4Wf So the reason for the temp ileostomy is to allow the pouch to rest and heal without stool passing through. There is increased risk of very dangerous complications including abcess and pouch failure if temp ileo is not used. However, there is a flip side. Temp ileostomy do have some small risks themselves. So it is a balance act. Other things that are considered.... Steriods or immunosuppressants: these delay healing and if used before surgery will often be a reason for temp ileo creation. [ more ]
ShannonB Thank you for letting me know your experience and results, really appreciate it! [ more ]
Jaypea I had my ileostomy and colectomy in May of 2012. My j-pouch formation and take down of my ostomy happened all in one step in Nov of 2013. My surgeon said that he would not know if he could do the second surgery all in one step or if I would be left with a temporary ostomy until he had me opened up on the table. He managed to do it all and I am VERY pleased with the results. It took 10 days before my bowel woke up so had some immediate post-op complications but now I am going back to work,... [ more ]
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J-Pouch ForumsGeneral Discussion
1st surgery in less than a week!
M mmmambre
kta I had surgery in a hospital far from home and was glad. The last thing I wanted was visitors with that new bag on my stomach. Like others, I was pretty drugged up too. I really just wanted all my energy to go toward healing and getting strong again. [ more ]
Jan Dollar There's a difference between "visitors" and the one or two people who are your primary support. I would advise all visitors to hold back until at least the next day. The last thing I wanted were well meaning family or friends dropping by to wish me well. I had tubes in every orafice, multiple IVs, monitoring equipment, and nurses messing with me every 15-30 minutes. I was happy to say a few sentences to my husband, then let him take a nap in the chair. If you are in the ICU, only one person... [ more ]
Scott F There's a big difference between visitors who bring implicit demands (for attention, conversation, whatever) vs. those that just don't. I was very pleased to see my brother in the recovery room, and my wife on day 2, but I had nothing for anyone else for a couple of days at least. [ more ]
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J-Pouch ForumsGeneral Discussion
Issue falling asleep
aka KNKLHEADaka KNKLHEAD
liz11 yup try light exercise and also "baby bendrayl" most likely everything is just post anesthesia stuff and drink lots and lots of fluids to flush out those surgery drugs so happy to hear you are doing so well I felt the same when my malfunctioning jpouch first got disconnected by remzi. I was like a new human in just two weeks. so happy for you. [ more ]
wsh6745 Thanks for the quick response. I was beginning to think I was doing something wrong. I hope everything heals for you this time. Have you actually gotten to use the J-Pouch yet? I sure hope everything heals soon! [ more ]
aka KNKLHEAD Hi, WSH: I rear your earlier post and glad you are doing well. I am unique, it that this is my third stoma. I've not had the best of luck so far with the "very nice looking" j-pouch ... abscesses and leaks. I have it way easier than you because I have a three-year-old pouch, so my last surgery was pretty simple; pull the SB out and make a loop ostomy. After my first step of three three years ago, it took me a while to shake the surgery, but it does happen! I use Convatec moldable two-piece... [ more ]
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J-Pouch ForumsGeneral Discussion
catheter for j-pouch?
pouchingtonpouchington
MarkGregory There is a slight learning curve, but the main thing is use lubricant (i use vaseline even though others say thats a no no. Ky doesnt stick good enough) slowly insert and if you feel something catching, try twisting a small amount while inserting. I dont recall ever having bleeding. I did get soreness if i used the catheter too often. If you are inflamed inside, then the catheter may just be making it worse though. [ more ]
pouchington hi mark, i tried it and had moderate bleeding. felt like it was scraping. also, i struggled to empty very much and it was very thin. any ideas. [ more ]
MarkGregory No, no pain as long you use some lubricant, and are careful inserting. Once inserted, while pushing some, turning the catheter helps keep things moving. Since it is so small, it doesnt take much to block the holes, so turning it helps stuff go thru the holes. I also cut the catheter down to around 6" long to help also. The catheter is the only thing I can do to eliminate completely. Its amazing how many times when there feels like there is little to no stool in the pouch, upon inserting the... [ more ]
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J-Pouch ForumsGeneral Discussion
1 week after takedown
J JW280
wsh6745 JW280, Good for you!! I am so excited to hear that you are doing so well after only one week. I will hopefully have my takedown surgery in about 6 weeks so keep me posted on your progress. This is great news, congratulations. Thanks for sharing, it is so nice to read some positive postings too. Thanks, Wendy [ more ]
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J-Pouch ForumsGeneral Discussion
Patch help
F fumble
BillV I have been using a generic version of Stay-Free Maxipads which come in a package of 48 and can be found in stores like Dollar General for about $3.50. I cut them in half and can get up to 3 uses (intubations) from them. They absorb a lot of mucus and have an adhesive strip that secures them to your underware. I also use Ampatches when I go swimming and have mixed results regarding adhesion. They stick best when the skin is clean and dry, but then, does it really matter when you are swimming? [ more ]
skn69 Fumble, Welcome to the site. I have a k pouch and use either a 32 French, a marlene cath or occasionnaly a curved medena but for me I keep all 3 in my pouch in case I need a different direction to get into my pouch. (I have a mobile valve that twists and turns so sometimes one cath doesn't work and I need something different). I use a folded up mini-kleenex on my stoma, my unddies hold it down fine and at night a piece of tape does the trick. It is absorbant, catches all of the mucous and is... [ more ]
Jan Dollar If you do not get a response right away, you may want to do a search in the K-Pouch Korner forum, as that forum is specifically for those with a continent ileostomy: http://j-pouch.org/eve/forums/a/frm/f/5531006091 Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Athletic support for J- pouchers
SB S Brick
ActiveUC'er Is this the type of thing you are talking about from Dick's? http://www.dickssportinggoods....ctId=11596151&ppp=85 Here's what I'm talking about from CVS. http://www.cvs.com/shop/produc...-Medium?skuId=894923 [ more ]
ActiveUC'er I'll get some plastic surgery in a year or so once I have a break from surgeries and lose some weight. It will be considered "medically necessary" as it's pretty severe so it will likely be covered by insurance. [ more ]
S Brick Thanks- I will check out both options. I'm petite size so I would likely have to cut it. I heard there is a wrap at Dicks Sporting Goods supposedly but when I look or ask about it no one seems to know what I'm talking about. And I'm sorry to hear about the abdominal wall- I always wonder how much our bodies can tolerate. For me, this complex fistula business has literally been a pain in my ass- pun intended but we keep moving on & hope for the best. Thanks for the advice. [ more ]
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J-Pouch ForumsGeneral Discussion
Nervous!!
W wallflower
wallflower I'd had a kidney stone and UTI back in November. Once that passed it felt like the pain just moved to the right. The blood is coming bowel wise, not urinary. I haven't been fevered. Calling GI today. I'm almost to my 4 year mark w/the j-pouch. Thanks for your thoughts, I appreciate it. [ more ]
Scott F One way you can usually figure out if there's any sort of infection is taking your temperature. Assuming you're not on Tylenol or NSAIDs, it's unusual to have a bacterial infection without a fever. This could be two different things, or you could have a smoldering blockage that acted up for a little while. Stick to liquids when you're feeling blocked, and be careful not to get dehydrated. Do you have an appointment scheduled with your GI, to help you sort this out? [ more ]
GinLyn Could be a partial blockage, adhesions, an abscess, or even something random like a kidney infection. Blood when you urinate or defecate or randomly? It is not necessarily a big deal (meaning it might not be anything super serious), but it sounds like you should get it checked out to make sure. Even tiny, minor infections can become large, serious problems if not treated properly. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Coco Bidet
J JW280
Scott F I'm seriously looking at the ridiculously expensive Toto that mists the bowl when you sit down. My thinking is that the shrapnel that sometimes comes out of me is less likely to stick to a damp surface. It's a heck of a luxury, though, but it's still cheaper than the bathtub my wife picked out. [ more ]
TinCan My bidet was in the $300 range too with the warm seat, warm water, and dryer. I rarely use the dryer but I get really cranky when I don't have access to my bidet with the warm seat (particularly on cold days) and the warm caressing spray. Calms me down just thinking about it. Not sure what that means about my life though. [ more ]
GinLyn Oh my goodness, Scott, that makes me crack up! We're moving this summer and I am very critically looking at the bathrooms in the houses we're viewing, completely with an eye toward installing a bidet. Haven't even begun to check out the market here; anyone else in Europe have any tips? Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Afferent Limb Syndrome
kiwiPouchnUSAkiwiPouchnUSA
TE Marie I feel for you in recovering from surgery. What else could you do? I hope all is fixed and all the pain and suffering will end soon. [ more ]
kiwiPouchnUSA Update: I had the surgery as planned last week. They fixed the afferent limb/prolapse/partial obstruction by pexing the pouch and the afferent limb back into place. I only hope it lasts. Luckily for me (I guess) they didn't need to re-sect the pouch inlet as they had expected, and also I was pleased to wake up without a bag (as expected). The hospital stay was 4 days, so I came home Sunday. I have been suffering from bad nausea and no appetite, and lots of abdominal bloating and cramping. It... [ more ]
TE Marie I don't want what Winter wish had but I'd like the results as then I'd be rid of my chronic cuffitis! (I don't have afferent limb syndrome.) Best of Luck kiwiPouchin! [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch not emptying
J JW280
PHedges Thanks Jan, I am also very new to take down surgery - 2 weeks for me, I don't have high expectations so I feel I am a bit more patience that way, I am glad to hear the re assurance of it takes time and hang in there that all I'm going through is expected. [ more ]
Jan Dollar The pouch capacity is very small in the beginning. Plus, it is very sensitive/irritated and not used to it's new function. Add to that the pressure that gas creates, and you are bound to have frequency and urgency. Each week you should see some progress, both in your ability to delay a bowel movement, and your ability to sense what is going on. The best medicine for this is tincture of time. Most of us would rather have some sort of way to short cut this process, but it takes what it takes... [ more ]
JW280 My main concern right now is I really thought from what I have read and told by my surgeon that I would have better control over my bowel movements. It's such a foreign feeling at this point when I have "to go". It takes over my body and my thoughts.. And each time it's only a little bit of stool. I wish my pouch would fill like its intended to before I have to go. Once again, I reminds me of the days with UC. It had that same control on me.. I'm trying to go through my new daily routine the... [ more ]
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J-Pouch ForumsGeneral Discussion
Had surgery again on Tuesday...
PouchomarxPouchomarx
Nomoremeds I feel your pain. I am in a similar situation (pouch sinus, suspected small leak, and now diverted). The crazy thing is, they don't even know for sure there is a leak, as they can't see it. They just suspect it, since they found inflammation outside my pouch. This just goes to show how small leaks can really fly under the radar. While the loop ileostomy is not at all ideal, hopefully it will allow things to calm down and heal up. [ more ]
ActiveUC'er I am so sorry about your recent difficulties. Sounds painful! [ more ]
Jan Dollar That's great news that the surgeon cleaned up in there and sutured the pouch leak. Hopefully, this takes care of it. I knew that the sinus repair with the needle knife was a separate thing, but all along it was to avoid a major surical repair. I guess that the signifigance of the other leak was underestimated. When I had a pelvic abscess, it pretty much flew under the radar until I had serious symptoms that required emergency intervention. Leaks are sneaky things. By the time the abcess was... [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming J-pouch surgery. Need advise.
M mibellinger08
BillV I had a J pouch for 30 years and my main complications were frequency, skin irritation and some incontinence. However, I adapted to these problems. Keep in mind that many of the posts on this board involve “problems” people have experienced with their pouches and solutions that are offered. A high percentage of people with J pouches (possibly 85+%) are satisfied with them (at least enough to not opt for an alternative) and most do not visit this board. There are no guarantees of good results... [ more ]
MarkGregory If your ileostomy is working good for you, I would stick with it rather than risking j pouch surgery, possible complications, pouchitis, etc, etc, and then more surgery to remove the pouch if it doesnt work out. JMHO [ more ]
Soupcanbetty Thank you for posting this question! I just joined the board today to ask the exact same thing - sort of. I got an emergency ileostomy on January 5, 2014, and I like my exterior bag just fine, now that I'm used to it. However, I am going to be back at work soon, and so far I am not comfortable going swimming or dressing in anything but baggy clothes. My ileostomy surgeon made sure to make it possible for a j-pouch in future, and now she has taken the liberty of booking me a consultation with... [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Pain - Butt Burn post take down
P PHedges
JW280 I definitely agree with the trial and error comment. My main concern right now is I really thought from what I have read and told by my surgeon that I would have better control over my bowel movements. It's such a foreign feeling at this point when I have "to go". It takes over my body and my thoughts.. And each time it's only a little bit of stool. I wish my pouch would fill like its intended to before I have to go. Once again, I reminds me of the days with UC. It had that same control on... [ more ]
PHedges Thanks Steve for the correction, I will test both of them the gold bond ointment and the nupercainal. This ordeal have been all about trial and error! I appreciate all suggestions [ more ]
ElmerFudd FYI - it's not the Gold Bond powder. They make an ointment. The ointment is what you want. [ more ]
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J-Pouch ForumsGeneral Discussion
trying to add new foods?
G Guest
Jan Dollar Yes. It is completely safe to do on a regular basis. Just know that if your sphincters are clamped down, you still may not be able to evacuate without a catheter. Jan [ more ]
pouchington i like the sound of tap water enemas. just reuse a fleet bottle? [ more ]
Jan Dollar Thanks for the clarification. You really need to get those B&O suppositories, as they will relax those tight sphincters. Then you should be able to handle some bulk in your diet. But you will need to do it gradually, if you have been avoiding solid foods for so long. As an aside, eating solid foods does not mean you have solid stools. You need bulk for your GI tract to function properly. It needs the bulk to have something to move along. Without a colon, the stool will be liquid to loose... [ more ]
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J-Pouch ForumsGeneral Discussion
question re antibiotic rotation
BM boy's mom
boy's mom Thank you. I appreciate all your answers. [ more ]
liz11 I'm allergic to a lot of antibiotics. Most recently, I was rotating bactrim, xifaxan, oral vancomycin, and doxycyline. I also had tindamax for awhile. Last thing he has me do was rotate just one week for each. But also have had problems with a few of those on the list causing serious side effects. So right now on an antibiotic holiday and trying to figure out what to do next. [ more ]
Rebe0505 everyone is different as to what works for them but i followed lead of another jpoucher who rotated for 13 yeaars.. i rotated 4 antibiotics changed about every three weeks to a month..this way i left a good deal of time for it to work again..the 4 i rotated was leviquin,tindermax,keflex,xifaxin...however after about three years i felt xifaxin just did not work and replaced with augmentin..my experience was on occassion i only made two weeks on one and i would just move on.. [ more ]
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J-Pouch ForumsGeneral Discussion
cal protectin rise cause?
BM boy's mom
boy's mom Thank you ElmerFudd/Steve. I appreciate that info. [ more ]
ElmerFudd And for your other question, there is a positive relationship between high FC levels and inflammation - so pouchitis or cuffitis is a good guess. Steve [ more ]
ElmerFudd Two studies of the connection found there was no relationship between FC levels and SIBO: CONCLUSIONS: FC values are negative in children affected by SIBO, not differing from those obtained in healthy children, suggesting that no subclinical intestinal inflammation involving neutrophils occurs in patients with higher proliferation of bacteria in the small bowel. The presence of high FC levels in children affected by SIBO might not be caused by bacterial overgrowth itself and, in this case,... [ more ]
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J-Pouch ForumsGeneral Discussion
Sugar/Jpouch/pain
G grandmaof1
Indy_Dave Sugar kills me - butt burn galore!!! worst is stuff like shakes n frozen yogurt - the frozen yogurt sundae at Costco has 55 grams of sugar... [ more ]
mgmt10 I don't have any issues with sugar. Unfortunately I have a major sweet tooth and eat too much of it. [ more ]
skn69 I'm a choco-holic and eat tons of chocolat, candy (less now than before but still way too much), ice creams... but I don't eat cake. I can have my sweets without any problem as long as I don't eat cake. I think that it is the mix of flour and sugar that get me. So I eat the frosting on its own and give the cake part to hubby...my pouch is happy that way and so am I. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
incontinent at night and cant go during the day
C cora
Jan Dollar I think it is reasonable to try other antibiotics, but since you failed one, I think you should scoped first to confirm pouchitis. You may be on to something when you suggest a mechanical blockage. Some people develop an over stretched pouch, where it can twist or collapse on itself when you try to empty. This sort of defect may not be visible on scope and you need a motility exam, like a defegram, to see it. It is also possible that you have an anal or pouch inlet stricture, although I... [ more ]
CJB Cora, I don't have this exact problem but I do feel much better during the day than I do in the evening. I think it is because by morning time my pouch is completely empty. It is only later in the day when the breakfast, and lunch start making their way out. And of course during the night is usually when supper makes it's way out. It might just be a timing issue for you. CJ [ more ]
cora Thanks Scott, is it normal not to be able to go during the day then only at night....I find that a bit mad in my head its like when I'm standing up my pouch is blocked and then lying down it isn't or is that a stupid theory. I've never had pouchitis [ more ]
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J-Pouch ForumsGeneral Discussion
2 weeks after takedown....
BebeksporBebekspor
TinCan Your story sounds quite familiar to my own. I had my reversal a little over two years ago and am doing well. But the first few weeks/months were a challenge in that gas pains and pressure especially late in the day or evening were a problem along with butt burn (I used desitin along with a bidet - which made the most positive difference). I also had a very different feeling when it came to urinating. It was difficult to pee and not also feel the need to poop. My plumbing just felt different,... [ more ]
Ljz Sounds like things are getting better, but I hear it can take longer than 2 weeks! Hopefully at the 1 month mark you'll have better control! My take down is 25 days away and I am concerned but hopeful I will be mostly under control at 1 month! Regarding difficulty urinating, I would tell surgeon but often issues happen after having catheter few days. I had no problem when catheter was removed after 1 day, but my 2nd surgery had it 3 days and I had continued difficulty urinating, couldn't... [ more ]
Bebekspor Yes, the gas pressure is awful! Especially later in the day. What I ate for lunch yesterday must have disagreed with me because I had horrible gas starting around 4, I was just lying on the couch in pain, just waiting until the gas would come out (it took a few hours). Went out with my husband for Valentine's Day, wore a diaper had lots of gas pains but sat in the bathroom at the restaurant for about 15 minutes and luckily was able to go. It was a quick date, but nice to get out. Looking... [ more ]
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J-Pouch ForumsGeneral Discussion
joint pain
D dawn58
skn69 Hi Dawn, Yes, I have joint pain, mostly sacro-iliac (hips), feet and between the scapula (upper spine) and cervical...plus other parts that come and go. I used to be able to manage it reasonably well with NSAIDs (beware, they can wreak havoc on your digestive system and cause bleeding) but I take them morning and night and nothing in between. I also went to the chiro weekly or bi-weekly for years. Now I go to a physiotherapist regularly (it isn't immediate like the chiro but helps over the... [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown in the morning
J JW280
JW280 It's day two from my takedown and for the most part I'm feeling good. Although I've had about 10 BM today and its starting to get raw down there. Doing the cream and it helps but really is a pain. I'm trying not to strain to go, it just doesn't feel like I'm emptying all the way, Will this get better over time? [ more ]
TE Marie I hope your new plumbing is working well. I don't want to discourage you but think your 2 week time table for going back to work is unrealistic. You might want to read a few other subjects in this section. I don't think Superman could have done your job 2 weeks after take down. If you need a doctor's excuse I'm sure your surgeon will give you one for how ever long it takes you to heal enough. Good Luck [ more ]
aka KNKLHEAD Hope you poop the bed soon! Congrats and best wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
takedown
MurrayMurray
TE Marie It's taken me 3 years to get here Murray but I can get up to 5 hours of straight sleep sometimes. It might not start until 4 am but that's ok. [ more ]
Murray 5 hours in a row???? OMG I'd kill for that. best I do is 3 then roll over for a gas check. [ more ]
TE Marie Happy New Plumbing Anniversary! What is considered a full night's sleep? I forget what that is. I think 5 hours is great. [ more ]
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J-Pouch ForumsGeneral Discussion
To have surgery or not?
KW Kim W
Harlean Please investigate the colon cancer rate among long term sufferers of UC. Do you want to feel sick for the next ten years on and off and then deal with colon cancer or anal cancer? My decision was to be done with my colon, though by the time the docs agreed, I had no choice. Ask your doctor and surgeon separately. Do you really want to feel horrible for ten years to save your colon only to lose it to cancer? ASK YOUR DOCTOR And SURGEON. Insist on a straight answer and good luck [ more ]
Indy_Dave For me it was when my wise doc said that I had been so sick for so long that I no longer knew what feeling well felt like....booked the surgery the next day... good luck [ more ]
ElmerFudd A lot of good feedback here. My experience was also kind of forced - it was surgery or bleed out. Totally unexpected too after 24 years of minimal issues. Anyway, I will tell you that even with my prolonged, year-long "adjustment" period to my j-pouch, I am very happy with things now. Enough so that when my daughter was diagnosed with UC at age 6, it wasn't much of a decision for us when prednisone was the only thing maintaining anything close to remission (not Humira, not Remicade, never... [ more ]
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J-Pouch ForumsGeneral Discussion
Having the 3 Step JPouch surgery
G Goody21
Harlean I had what you are having and if you are healthy, it stops you from nothing. The end ostomy was worst for me as I was not yet a pro at keeping skin clean. KEEP THE SKIN AROUND THE OSTOMY CLEAN? If you play sports, ask your doc about lomotil. They tend to wait til you are fully hooked up again to offer the drug but, in sports, a bag of poo is much less of an issue than a bag of brown water with some solids. It is a quality of life issue for you. The second loop ostomy is a breeze and just... [ more ]
beckysmom Doing mostly okay. Hope you feel better soon. [ more ]
ActiveUC'er I also recommend some sort of stoma guard if you are a catcher. Otherwise, I don't see you taking many abdominal shots. I'm guessing you'll feel so much better in general that you won't mind the stoma so much! http://www.ostomyarmor.com/ [ more ]
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J-Pouch ForumsGeneral Discussion
Perforation at tip of J-pouch
D dtmack
grandmaof1 Good Luck!!! I am so sorry you have to go through this. I am from Jackson area and had two GI doctors do scopes and tell me I was fine. Yah!! Within three months I was able to see the top GI doctor at U of M and found out about 3 months later after another scope done there that I had pre cancer cells through out my whole colon and UC. Doctors in Jackson didn't have a clue what was wrong and only said I am sure you have IBS. U of M saved my life and so do I. My GI doctor said if I would not... [ more ]
dtmack All of my initial surgeries were done at Cleveland Clinic by Dr. David Dietz, who is magnificent. The emergency surgery was completed by Dr. Wassvary out of Beaumont Royal Oak. While he is a very nice person and did the best he could considering, i think what i am dealing with is out of their league. Cleveland sees me on April 4th to start over. [ more ]
grandmaof1 If you don't mind me asking what Michigan Hospital did you go to? I had mine done at U of M. I have the greatest GI doctor and Surgeon. Matter fact they saved my life. I think they are awesome. I am so sorry you are going through this. I hope you don't mind me asking. I would love to share who I see. Especially my surgeon. She did my take down in 7 weeks and it was completely healed. I was so sick with my ileo/bag. [ more ]
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J-Pouch ForumsGeneral Discussion
3 Years Out and Doin' Fine - Some Encouragement
B BridgetB
Lew Bridget Nice to hear your doing so well. Hope your frequency will improve with time! Lew [ more ]
xlfutur1 Thanks for the encouragement. my 14 year old has UC and had the surgery just a few weeks ago. It is nice to know her future will be much brighter without dealing with flares and hospital visits every couple months. [ more ]
mgmt10 Glad to hear you are doing well. My journey with the J pouch has been a total success. I had severe pancolitis and I tried every drug out there. Diets too and even acupuncture. One morning I woke up and I knew I couldn't go on another day living like I was. Or should I say not living. This procedure has been a God send and I don't take a minute of it for granted. The J pouch has its quirks but it's better than UC a million times over. Continued good health to you [ more ]
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J-Pouch ForumsGeneral Discussion
C diff
P Pluot
Jan Dollar Sounds appropriate to me. You should be back in shape soon. Jan [ more ]
nbm I was treated with flagyl for c diff (had j pouch as well at time) and it cleared it up and I never got it again. I think vanco is even stronger than flagyl so hopefully it will knock it right out. Not sure how I got it either--I had giardia at the same time (I know I got that while travelling in China)--flagyl worked on both of them. Good luck and I hope it is just a one time thing. [ more ]
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J-Pouch ForumsGeneral Discussion
weird feeling in upper abdomen
B bec1970
bec1970 Thanks, Jan!! That doesn't sound too alarming. I will definitely mention it to the doctor but will try to worry less over it, and see if it is associated with anything in particular. [ more ]
Jan Dollar The area you describe is the epigastric region (the stomach). So, what you are feeling is stomach movement. Sure, it is natural for the stomach to move, but if it is hyperactive, perhaps you are developing gastritis, ulcer, hiatal hernia, etc. But, since you have no pain, it is what they call "subclinical." That means that if they did an upper endoscopy, they might find some gastric irritation, even though you are not experiencing pain or heartburn. Of course, it could be adhesions that are... [ more ]
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J-Pouch ForumsGeneral Discussion
Just had a scope have cuffitis..but doc wants to take more rectum!?
dgtracydgtracy
bec1970 Just want to say sorry you are having these issues. And I would like to join the anti-flagyl brigade. [ more ]
dgtracy I hate flagyl too. I will try the hydrocortisone supps before that other surgery..just scared of not being able to hold it as well if they take more rectum [ more ]
grandmaof1 I have always seem to have throbbing right inside my rectum. And they confirmed inflammation. I guess I will ask for suppositories. I feel at a lost of what to do. Cipro was working until I came off and now that I am back on they just are not working. And I hate Flagyl. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery to remove a twist in the intestines
Boston170Boston170
CeeeeCeeee My blockage story is similar to clz81's While in the hospital on morphine I also had an NG tube inserted and until the twisted small intestine untwisted, I was on IVs only. Nothing by mouth....which was fine with me. I was grateful for the morphine, believe me! What finally caused my small intestine to untwist? Here is my guess....I've never really asked the question of my surgeon but every time my surgeon visited me.....at least twice or three times a day, he would start by placing his... [ more ]
clz81 I'm not sure at what point exactly surgery is required to "unkink" a bowel. I waited mine out for several days in the hospital with an NG tube, IV fluids, and daily x-rays. Also 2 CAT scans and and MRI. As there was no immediate threat to me, the GI team and surgical team checked on my twice a day and we kept waiting til things cleared up. They don't really know what causes them to unkink, but they say that the NG tube to give the bowels a rest and the hydration from the IV is very helpful. [ more ]
Boston170 Thanks for sharing your story CeeeeCeeee. Was there a reason that helped the intestines unkink? What did they have you on at the hospital? I'm hoping that the same happens to me. I'm on a liquid diet now, water and Ensure. Boston170 [ more ]
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J-Pouch ForumsGeneral Discussion
Searching for a GI in So Cal
M Mattjp
CeeeeCeeee The GI doc I mentioned is in Newport Beach. His name is Donald Abrahm, M.D.; 1525 Superior Ave., Ste 104, Newport Beach (949) 631-2670. He is very popular and you might have to wait awhile to get an appointment. He is very knowledgeable about J-pouches. I just had him do an upper endoscopy and my colorectal surgeon performed a lower endoscopy on me right after Dr. Abrahm finished his procedure. Best wishes! [ more ]
Mattjp I'm in Temecula, so it's about the same distance if they were in San Diego, or LA. Can you send me the info on the doctor? Thanks. [ more ]
CeeeeCeeee Is Orange County (Newport Beach) too far for you? I have a fantastic GI doc! [ more ]
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J-Pouch ForumsGeneral Discussion
Out of Kaiser need new drs. In Fremont, CA
DT Diane T.
Jan Dollar My Fremont Kaiser GI is Jean-Luc Spzakowski. He seems pretty knowledgeable about my j-pouch. He's been with Kaiser a long time. First in SF and now Fremont/Hayward for a number of years. He might know someone local in the private sector. http://mydoctor.kaiserpermanen...er/jeanlucszpakowski But, yeah, probably a good idea to find out who is in your network first. Then you can give the list to the Fremont GI Department folks and he could may e recommend from there. I did something like that... [ more ]
Diane T. Hi Jan, Yes, I did call Dr. liu's office and talked with a nurse practitioner. He said that Kaiser drs. Do not keep in touch with out-of-network drs and being so far away, the drs there would only know of doctors in the Walnut Creek area. He mentioned to call Fremont Kaiser to see if they know of any private drs. That is when I thought of asking this jpouch list. He also mentioned calling my insurance company and ask what GI drs and surgeons are on their list. Yes, "roto-rooter" is dilating,... [ more ]
Jan Dollar Have you asked Dr. Liu for referrals to other providers locally? Even though the Kaiser docs are within the Kaiser "cocoon," they usually know their peers in the community. It is not too uncommon for folks to lose their Kaiser coverage and need a referral. If you have already been out of coverage for a while, you probably can't email your doctors anymore, but you certainly can place a call. By the way, Dr. Dennen was my surgeon too, but he has long since moved to head the bariatric surgery... [ more ]
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J-Pouch ForumsGeneral Discussion
Ironman
TP Tommy pb
hfc I hope to get to Austin this weekend. I think I may be camping out at Dulles Airport in Suburban NOVA trying to get to Austin for a marathon. I try to do 2 or three gels an hour, hydrate at every opportunity, and am happy if I am in the middle of the crowd. I am nearing 55, work 12 hour days, and find it difficult to get the training in. Hope you do well at Chattanooga. If you are doing triathlons, you are doing more than the other 99% of the population! [ more ]
Tommy pb Thanks hfc! Dude you rock! Good luck on your upcoming events! What do you like to use for nutrition during your long runs? And are you spiking your water with anything? I am always trying to learn as much as possible and try different ideas. Especially from fellow jpouchers! If there are any other athletes out there that read this I would love to hear from you! Hfc if you ever make it to San Diego for an event look me up brother! Cheers Tommy! [ more ]
hfc Good luck to you. I am going to try for Beach to Battleship IM in NC in early November. I am running Austin TX marathon week on Sunday, Roanoke VA marathon in April. In June wife and I are running 56 mile ultra in Durban South Africa. (Comrades) [ more ]
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J-Pouch ForumsGeneral Discussion
Being discharged at noon from ileostomy
aka KNKLHEADaka KNKLHEAD
Jan Dollar Good for you! Best thing about the treadmill is that if it feels like it is too strenuous, you just turn it down or get off. Not like going on a long hike that you have to walk back from, even if you are wiped out. The thing with driving is that they don't like you doing a lot of flexing of the hips and abdomen right after abdominal surgery. Of course, if you drive an automatic, that is less of an issue. Plus, if you are taking pain meds, they don't want that liability. I will tell you that... [ more ]
aka KNKLHEAD Ha, ha. Thanks, Jan! The doctor said no driving for two weeks .. etc. (I need to drive on the 19th for business.) I can't blame my wife, I've been in some tough shape on and off for the last few years, and she's afraid of me over-doing it. I am very tired of being a sick person! With your approval I put the Olympics on my Acer S7 Ultrabook and walked a good pace for 20 minutes. Pretty easy. I will continue to do it daily and I may up the pace. [ more ]
Jan Dollar Sounds like things are working as planned. You could have picked up a respiratory virus in the hospital (best place in the world to catch something!), so I would not worry about stopping the antibiotic; at least not yet. Now, why would your wife kill you for taking a walk on the treadmill? Should be perfectly fine since you did not have your legs operated on. Walking is the perfect post op exercise. It is what you'd be doing if you were still in the hospital. Best thing in the world for your... [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber
MurrayMurray
JJA I use both immodium and metamucil, and I use the pills and do NOT take any of the extra water. My issue is incontinence due to the loose stools and a damaged sphincter, so I aim for as thick as possible stool to manage my continence. Insoluable fiber pretty much passes straight throught the digestive system in folks like us, without breaking down much-thus you can often see the corn kernals, apple skins, etc. on their way out, and at least for me these types of fiber tend to lead to more... [ more ]
Scott F I recommend that you use the "Find" function to search for the word "insoluble." You'll get a bunch of perspectives. Soluble fiber, like psyllium or wheat dextrin, helps us keep our stool a bit thicker, and (for some) easier to control. Insoluble fiber (e.g. fruits and veggies) is okay for most of us, at least in moderation, but not as directly beneficial for us as for folks with colons. [ more ]
boy's mom On the subject of fiber, could someone explain soluble vs. insoluble fiber for j pouch. thank you. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Feeling Gross All The Time After Permanent Ileostomy Surgery
Tiffy-pooTiffy-poo
Jan Dollar Oh my gosh! Sorry about the MS diagnosis, and those mental health issues are no help either. Hopefully, knowing what you are dealing with will help get a handle on it all. Again, so sorry about it. Fingers crossed that the MS is very slow to progress. Jan [ more ]
Lesandiego I am so sorry to hear of your new diagnosis, but glad you finally have your answers. MS sucks and they once thought I had MS after my strange neurological event (infarction that attacked my myelin in my occipital lobe). Took me years to get a diagnosis and recover. I take 1200mg of neurontin a day and it helps with the residual nerve damage. [ more ]
Tiffy-poo I just wanted to let you all know the answer to my dilemma when I wrote this post. I have Multiple Sclerosis. The only reason I went in for an MRI of my brain and spine was because I felt like my memory was was getting really bad and my mom had dementia, so I demanded that be looked into. One link to nerve damage is the antibiotic Cipro, which I was on for several years for pouchitis. Thankfully my symptoms aren't extremely painful or anything and I'm still mobile. The other problem was... [ more ]
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J-Pouch ForumsGeneral Discussion
Digesta-Cure
K kentuckyboy
Jan Dollar I suppose it might work. However, what I find rather unbelievable is a product that "cures" numerous autoimmune diseases with all natural immune modulators, without any side effects or drugs. If something is powerful enough to have a pharmeceutucal effect, how is it not a drug? And, anything that has a pharmeceutical effect can have side effects. Remember, many of our traditional drugs are plant based. It contains stabilized mannans of the aloe plant, which are known to have healing... [ more ]
kentuckyboy I am considering it because I have cuffitis and I am desperate to try anything that might work. My Doc tells me that my pouch is fine but I still suffer from frequency and pain in the cuff and he has prescribed most everything else. [ more ]
suebear Why are you considering it? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Confused by results
N Nroley
ActiveUC'er @Jan - can you point to anything to summarize what you described (that IBD is a whole spectrum of diseases). I haven't heard that before and would like to read up on it. [ more ]
Jan Dollar The Prometheus test, or any of the IBD serology tests, are not conclusive. They are only for tipping the scales in one direction or another. They are beginning to understand that IBD is a whole spectrum of diseases, not just UC or Crohn's. So, you cannot just be "pigeon-holed" into one category or another. Basically, it does not really matter too much what it is called. What matters is that they treat based on your presentation and if it works, then that is good enough. Jan [ more ]
Nroley It's supposed to say inflammation, not infamy action. Sorry, auto correct. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics vs. digestive enzymes
HockadooHockadoo
Scott F For the first 6-7 years I didn't bother with either one and did just fine. Once pouchitis showed up I had a good reason to look at probiotics. VSL #3 is the best-studied, and that's what I currently use. I recently added S. Boulardi, which is a yeast (rather than bacterial) probiotic. In theory it should reduce my risk of C. Diff from the antibiotics that I now take. The gas sounds like the bigger deal for you, at least right now. Most of us can't safely fart off the toilet, so gas builds... [ more ]
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J-Pouch ForumsGeneral Discussion
Rookie j-poucher needs help!!
S Supersonic
PolypsAplenty Oh my gosh - another local boy! It's really early on in your process, it's going to take at least a few months to get used to it. For me, Metamucil (twice a day after first and last meal - 1 tbsp in 4 oz water) made a world of difference. I would slowly make changes to your diet and medicine so you know what's actually making a difference. For sleep, it's rough in the beginning - I was waking up almost every hour. Over time, your body will get more used to it. 1 tab Imodium before bed is... [ more ]
hawk3kt When I was 1 month post-op there was no way that I could have been working, I was still in the bathroom 15-20 times a day and sorting out the pouchitis problems. In fact many times I was wishing I still had my end ostomy and bag. Now, with the benefit of 2+ year post op - I offer this advice... Learn how what you eat effects your pouch. Avoid sugar, simple carbs, carbonation, and beer. Focus on foods that slow down your intestines (starches / greasey foods) - Focus on good health and... [ more ]
clz81 supersonic, i totally feel your pain. i did not have cancer, but was on my way there with high grade dysplasia. my UC was well controlled for 15 years so it was a huge shock after my biannual scope when i was told my colon needed to come out. i went from being very healthy and normal and planning my second child to needing these very unexpected surgeries that i had never heard about before. a month is not a lot of time to adjust. you will hopefully get comfortable with your new equipment... [ more ]
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J-Pouch ForumsGeneral Discussion
Info about cleveland clinic
L L.DL
ActiveUC'er They are probably most concerned with the "current" status of things in your body. I'm guessing anything that was tested prior to 2009 they would want to have re-tested anyway. [ more ]
Scott F It is common (though fortunately not universal) to discard medical images older than 5 years, and other old records are also often discarded, particularly for inactive patients. As we transition from paper to electronic records there seems to be more willingness to keep records longer. [ more ]
L.DL Thank you for help, I am really looking into it. As for my records the only issue I have is my scan reports. They could not give me copy's prior to the ones of 2009. They said they didnt keep anything before that. Is that possible? [ more ]
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J-Pouch ForumsGeneral Discussion
A More Complicated Choice
T Tornado6
Scott F The effect of rookie residents can be more subtle than just the care they provide to you. For example, in July at a teaching hospital the nurses are distracted as they try to make sure the new residents don't screw up too much. [ more ]
ActiveUC'er Tornado - I had a similar reaction with one of my surgeons. She's only three years older than me and I'm still finishing up my Ph. D.! It's like, what am I doing with myself. Inevitably my mom or someone answers "being sick" - thanks. I have had fellows/residents on my case before at Cleveland Clinic. When I was a more complicated case (I was hospitalized for two months...nothing to do with a jpouch screw-up), I was passed from one surgeon to another when my first surgeon went on a... [ more ]
Pluot I would just ask him or his nurse straight up. I had my takedown in July and I asked the nurse. She said it didn't really matter that the new residents would be in the hospital, because I would only be seen by my surgeon and his chief resident, and that was how it shook out. I suppose it depends on the size of the hospital, how many CR procedures they do, etc, but I got the feeling when I was there that they considered my procedure more "advanced" and the only inexperienced staff who ever... [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
GI doctor in Toronto
GaylaGayla
Murray I had my colectomy and pouch done at Mount Sini also Dr. Erin Kennedy was my surgeon. [ more ]
Gayla Thank you so much for taking the time to reply and for such a quick response. I passed the info along and they new the hospital well. Thank you again! Gayla [ more ]
PoucherInTO Hi Gayla The best IBD hospital in Toronto is Mount Sinai Hospital, on University Avenue. If your friend is in a peripheral hospital have her physicians put in a referral for a second opinion. The Colorectal surgeons are Zane Cohen, Robin McLeod (she has been my surgeon for 19 years and is excellent) and Helen MacRae. There are a whackload of GI specialists there, mine is Steinhart. Good luck and what a great friend you are to be looking out for your friend's mother! [ more ]
See all 3 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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