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J-Pouch ForumsGeneral Discussion
It's been 13 years.....hear that? 13!!
nocolon-2000nocolon-2000
Rick 1971 Amen to nocolon-2000! I am 12 years post op (1/2001) and life has been wonderful ever since. I am having some slight issues over the last couple weeks, which I why I am back visiting the site. I have been free of meds and accidents after years of being held hostage and if I can do it, so can others. In the last few years I have run a half ironman and run to marathons in under 3 hours. It did take time to adjust (post pop), but a positive attitude goes a long way!!! [ more ]
UCWarrior2010 I have my first surgery scheduled for this Friday and reading your post makes me feel a little more optimistic. Thanks for sharing your success story!! [ more ]
nocolon-2000 wiggles, I take Culturelle as well. I also take the generic for Imuran as I am re-dx'd with Crohns. I avoid most fibers and just go when I feel the urge. I don't count. [ more ]
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J-Pouch ForumsGeneral Discussion
instant messaging
W wiggles
TE Marie You can tell who is on if you go to the main menu, it lists our ID's from left to right up below the sites logo. I can see you are on now wiggles. [ more ]
wiggles ok. thanks so much. [ more ]
Spooky wiggles, if we did have IM, I would prefer that it be an "opt in" feature. To be honest, I check this site as much as I can, which currently is about 3-4 times per week, but there are days at a stretch where I'm just not able to get online long enough to read the recent posts, and if I had IM I'd feel bad "ignoring" people that I couldn't respond to immediately. Jan's suggestion of using the chat is a good idea. Maybe you could PM those you wish to speak to and set up a mutual time to meet? [ more ]
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J-Pouch ForumsGeneral Discussion
6 years and still so many bm's
S Stone
Jan Dollar Long term lomotil should be fine as long as your liver function tests are normal. But, if you can get by with Imodium (loperamide) instead of lomotil, it is preferred as simpler choice. But, be sure to taper off of it while increasing your loperamide, to avoid any withdrawal symptoms, since you've been on it a long time. Loperamide is related to opiates too, so has a similar safety profile. They are both pretty tame stuff. I've been on loperamide since my surgery in 1995. No problemo. Jan [ more ]
Dog Consider Medical Marijuana as well. It really slows my system down. Or, marshmellows sometimes help. [ more ]
Stone Thank you Liz. Im telling my doc on Wednesday. You know how awful it is to keep running to the restroom. Im so glad to hear something can finally slow this down. I appreciate your info. [ more ]
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J-Pouch ForumsGeneral Discussion
7 months out and nights are still rough
fqfq
NJK don't eat past 7. take 2 lomotil or immodum before bedtime. East a banana and apple sauce. don't drink while eating. You might need bigger guns to slow you down. Talk to your doc about something to slow frequency. [ more ]
Onwisconsin I am I'm five months out and I also hive night issues. After my night time meal I do go a little more often and then I set an alarm for 2:30 am, without I would soil myself every time. I still wear a adult pad to bed as about 1/3 of the time I get significant spotting that would ruin my underwear, night pants, and possibly sheets. A few things I have found that help as I try to get through this: no liquids past 8-9pm. Even if I'm thirsty I try to avoid until the morning. Trey to eat dinner... [ more ]
suebear I find that with diet I can limit my frequency to 4-6X per day. However, I don't like eating that way so I choose to have a higher frequency and eat the way I prefer to eat. Yes, you can limit the foods that give you greater frequency, or deal with the consequences. Your pouch will continue to mature so months or a year from now you may find you can tolerate cake and ice cream better. I eat what I want, knowing what the outcome will be, sometimes I monitor myself better than other times. [ more ]
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J-Pouch ForumsGeneral Discussion
hc suppositories for cuffitis
W wiggles
jeane Dr Shen indicated you can take the suppositories forever..although my surgeon is opposed to long term cortisone suppositories for skin thinning reasons. i am sure Shen meant on and off, not continually. Canasa is the better long term treatment but it obviously is not a good solution for you. Aside from the hydrocortisone the only other thing I am aware of rectally is kenolog injections (also a steriod but longer lasting)and belladonna suppositories (for spasms mainly). If your issue becomes... [ more ]
TE Marie I think over all only 4% of j-pouchers get cuffitis but can't remember if that is just 4% of UC j-pouchers or not. Please Google about it as there are several good papers out there that discuss problems with j-pouches and tests preformed. Dr. Bo Shen, of the Cleveland Clinic is always one of the authors. They give you a good insight into not only how rare but the medications tested. I believe canassa is best but if you can't take it the Anucort suppositories may be the only alternative. [ more ]
wiggles what are the stats on acute cuffitis vs chronic? [ more ]
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J-Pouch ForumsGeneral Discussion
Who has FAP????
L LilMoe03
ghostthepast i have f.a.p and had my first surgery when i was 20 in 2000.message me if you would like. [ more ]
Chuckus Hello. I'm just seeing this and will get into this tomorrow........I've been away, tending to family matters. [ more ]
skimzuma I am a 22 year old guy who has been diagnosed with FAP (at age 19) and undergone my j pouch surgery two and a half years ago. I had problems with needing to frequently use the bathroom and not knowing when I would have to go, but as time passed I begun to feel better. I would assume that because your son is younger it is a bit more difficult for his muscles to adapt. If you or your son would like to talk to me you can email me at christopherrimmele@gmail.com I know its a very tough burden,... [ more ]
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J-Pouch ForumsGeneral Discussion
issue with taking miralax for stricture?
J jeane
pauln Jeane, Sorry this is happening to you,it is no thrill trip for me although my attitude has hardened and i am in this to win it if possible.I do not want to go back to the bag if it is all posible and i am hoping you won't either.The information you get by reading all the posts on this site is priceless and has helped me turn around a negative attitude.Jeane to you better health and i hope you will feel better in the near future. [ more ]
jeane I guess I am still in denial Liz. My pouch function is really acceptable(aside from the straining from the stricture). I am still bleeding while on antibiotics and suppositories so I know it is not a good sign. I am having a scope with my GI in the next week and we are going from there. I cannot tell if my pouch is bleeding or if it is the cuff and the rectal ulcers. My GI works very closely with Dr. Remzi, so I am sure he can help me work something out. I am very concerned about this... [ more ]
liz11 I personally never had any side effects with lactulose. In fact, I thought it was one of the most innocuous drugs I have ever taken. So in case miralax doesn't do it for you.. lactulose may be worth a shot. hope one of these gets you some relief. fyi... something also just to add to your thinking mix.... dr. remzi's surgery schedule is generally booked pretty far in advance.. unless of course something is a dire emergency. It was four months for me to get on the schedule once we decided to... [ more ]
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J-Pouch ForumsGeneral Discussion
Needing advice
B Blairisking
Blairisking Just want to say thanks to everyone for your time and consideration to answer me back. its great knowing that there are people out there who want to help...Take care [ more ]
Dog Eventually, you will figure out how to pass gas without crapping yourself. Practice at home. It will take time for your system to figure things out again. . .I'm 4 years post takedown. Give it a few months and things start working like your old plumbing. Except for me, when I get the urge to urinate, I have to go RIGHT NOW. Other than that, things are normal. 6 weeks out, you might have just moved back to normal food (no more low residue diet). Just adds food back to your diet slowly to... [ more ]
CeeeeCeeee I'm over 10 years post takedown and once in awhile I experience the sensation of needing to have a b.m. when what I find is gas only. I am glad I visited the toilet at these times because I'd rather be safe than sorry. Thank God it doesn't happen that often anymore! Sounds like you are doing very well. Usually I can tell the difference between just gas or needing to actually have a b.m. You will also. It just takes awhile! [ more ]
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J-Pouch ForumsGeneral Discussion
6weeks in and still having 10bms a day.
B Blairisking
Dog Your BM's will gradually get lower and lower. Your body is still adjusting to the new setup. Immodium is your friend right now. Ohh, and if you don't have Calmoseptine yet, you might want to get some. Butt burn and butt itch, if you haven't experienced them yet, are coming. . .and then it passes. I found a bidet was a HUGE help in keeping my butt clean without using TP (TP chaffed something awful!). That stream of water also helped with butt itch. Congrats on your J-Pouch!!! Honest, you're... [ more ]
Blairisking Yeah I'm taking loperamide. Which does help, still trying to find a balance. Knowing that 10 times is ok for 6 weeks post op. puts my mind a rest a little. Thank you for your reply [ more ]
mgmt10 Are you taking Imodium or anything like that? If not, ask your dr. about taking something to slow the bowels. 10x a day is pretty good for 6 weeks after but I can understand the concern with your job. Stay away from too much sugar...I know that makes me go more. It's tough to suggest what to eat since its so individual. Your frequency will go down in the coming weeks/months. Hopefully you have no urgency. I can hold it for hours if I have to. It gets really uncomfortable but at least I can... [ more ]
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J-Pouch ForumsGeneral Discussion
treadmills
J Jenmystique
Scott F Physical activity is good for you. In the beginning you can use the treadmill for walking, if the weather is nasty or you prefer to walk indoors. As time goes by you can step it up as much as you like. I would strongly suggest that you enjoy safe physical activity whether it speeds you up, slows you down, or does nothing in particular in that area. It's not all about your bowels. [ more ]
suebear Exercise increases motility for me. However, I don't let that stop me, I work out 5-6 days per week. You will learn to juggle what works for you; diet, bowel slowers, fiber, etc. Sue [ more ]
liz11 Generally vigorous physical exercise slows down intestinal activity. One of my docs told me because blood flow to the gut is reduced and focused on more major organs during strenous activity. But then beware... when you stop.. its potty time! [ more ]
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J-Pouch ForumsGeneral Discussion
3 weeks post op--- Help a Momma out?!
T tblackburn
liz11 Possibly time to get her back to a GI doctor who specializes in jpouches? Oftentimes they are far more knowledgable at managing patients post surgery. [ more ]
skn69 Better than maxi pads are the adult or kid diapers...no joke the really thin ones that you can walk around in without problems...also supply her with enough dark colored plastic bags so that she is not walking out of the stall with a soiled diaper...when I was in grade school the teacher/principal had a letter from my parents explaining the situation...therefore I had a full change of clothes in school for emergencies in the nurse's office, a full run of necessary things (wipes did not... [ more ]
dawn58 This is not the solution, but wearing a maxi pad might help until she has better control. [ more ]
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J-Pouch ForumsGeneral Discussion
mixing tylenol and anti-inflamatories
skn69skn69
beckysmom Sharon, Hope your pain can be controlled or lessened with the these meds you are taking now. Let us know how you make out with Rhumy dr. [ more ]
skn69 Jan, I just saw my GP who put me back on 1 month anti inflamatories (500mg Naporine 2xs/day) and 1grm Paracetabol 3xs/day and sent me home with a letter to see a Rhumy...suggestion AS. Been a bit better since I started the anti inflamatories and antibiotics last week (larengitis, otitis etc...cold season has hit hard)...so I will find out shorty if it is just plain old inflamation of something more... thanks for the suggestion Jan Sharon [ more ]
skn69 I just followed the link and read the article..Yup, that sounds about right. I also have 18° S curve of scoliosis which leaves me looking like a bonsai tree on bad days. My pelvis is rotated forward on one side. So there is never any relief for this pain...I will print the article and take it with me to my rhumy, maybe he will listen... Thanks Jan Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
The international space station toilet - we're so screwed!
LionsPrideLionsPride
Breezie Thank you for posting this, it was really interesting! I'm going to watch it again with my 6-year-old son, as all things related to bodily functions are of the utmost fascination with him, ha ha! [ more ]
Scott F TP is my "sky's the limit" luxury. My wife was reluctant to buy the expensive TP I prefer, but I made it clear that my only regret is that we can't find even more expensive TP. [ more ]
Space-baby Thank you for posting the video. I always wondered about how things work up there so the tour really fascinated me. And I love her hair! Re the Russians' preference for rough toilet paper: I think it means that they were so used to whatever was available in Russia that some people couldn't adapt to new western, democratic tp. You'd think they be glad for something soft but maybe with something so intimate some people didn't want to make changes, which I can understand. They got soviet... [ more ]
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J-Pouch ForumsGeneral Discussion
Visit to Dr. Bo Shen
buttoutbuttout
n/a Forgot to add - Dr. Shen will go through your medical records with you. This took quite a bit of time... [ more ]
n/a Hi buttout (love that name!) There are a number of posts here from those of us who've seen Dr. Shen - you might still be able to find them by clicking the "find" button and searching for Dr. Shen. But here's my experience ... I'm not sure what you have scheduled - office appointment? Pouchoscopy? Other tests? My first visit was an office appointment and we - my husband and I - sat in his office and discussed my situation (pouchitis/cuffitis/fistula). He explained everything, drew pictures on... [ more ]
clouseau I am going to see him feb 6th. Do you have a pouch or are you considering one? Was there a specific reason to visit him, min was for a stricture above the pouch. Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3
K KiwiPoucher
wiggles i never realized a single strain could help with toleration but it makes sense. i think culturelle is a single strain and come to think of it i did seem to tolerate it better. [ more ]
TinCan I have not had any adverse reactions to VSL#3 myself, but know it can happen with most any probiotic. If uncertain, start at a low dose and see how things go. If you tolerate the initial dose, then try ramping up your intake. If you remain sensitive then perhaps an alternative probiotic would be worth a try. You may even want to try a single strain at a time. Natren, for example, makes three or four single strain probiotics - although they are equally if not more expensive than VSL#3. Until... [ more ]
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J-Pouch ForumsGeneral Discussion
pain medicine
S Stone
bootstrap All prescription narcotics/opiates (Norco, Tramadol, Morphine, Oxy, etc) are known to slow the bowels. Yes, it has had this effect on me back when I was taking it for UC pain and a bit after my surgeries, but it is NOT a good drug to rely on for this purpose as it is highly physically addictive. The last time I quit taking Norco, I had bad withdrawals including fever, chills, cold sweats, and headaches to the point where I had to go back on it and then slowly taper down off of it again. If... [ more ]
Av8erchic I took Norco after takedown for a couple of weeks on and off for pain. Didn't seem to help any to slow the bowels-but I am currently taking Lomotil and it's a lifesaver! [ more ]
Scott F In a sense that's what Lomotil is. Diphenoxylate is chemically related to the other opiates (morphine, codeine, etc.) but has more of a constipating property and much less pain control. Lomotil can control withdrawal symptoms for people addicted to opiates (though it would be silly to use it that way). [ more ]
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J-Pouch ForumsGeneral Discussion
unhealed wound from jpouch excision
L liz11
Nat ❤️
liz11 Its been confirmed the plan is to I&D at next EUA and then inject doxycycline or glucose. 70%success rate. I imagine it would be repeat treatments. I have no worries about them trying any of it. But it sure would be a new thing if my body ever fell into the 70% success group! It usually manages to be in the 1% of failure group. chiro-I had no idea they ever kept the anus when removing a jpouch. I had never heard of that. Hope it continues to work out for you. And yes, isn't a great... [ more ]
chiromancer I am really sorry to hear you are still having problems. I didnt realize your wound went that far "up". I thought it was mainly the anal closure area. How long did you have your pouch before it was excised? Do they think the length of time the pouch is in place makes a difference in its difficulty of removal? I had mine removed mid Dec laprascopically, (disconnected and end ileo in July) there were a lot of adhesions but the surgeon(s) was very happy with the surgery (4 hrs). I have had very... [ more ]
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J-Pouch ForumsGeneral Discussion
Did surgery help with Joint Pain from UC???
BD Blake D.
gleam I was thinking about my joint pain a few days ago. I haven't noticed any hip or knee pain since my Jpouch creation. I still have ankle pain but I attribute that more to skating injuries. So my answer is yes. However, would I go through with this procedure just to avoid joint pain? No way! [ more ]
CC Rocks I developed joint pain around the same time I was diagnosed with UC 24 years ago, was diagnosed with arthritis soon after. . During my J pouch surgeries I still had severe joint pain. It will be 3 years this October since my takedown and i still suffer from it. I had all my siurgeries at Cleveland Clinic and I am going to see Dr. Bunyard there in two weeks he is a rheumatologist. Everyone is different but my pain never went away after my surgeries. [ more ]
Scott F The cause of the joint pain has to be clarified, if possible. Colectomy isn't generally suggested for joint pain, though some folks here have seen improvement. [ more ]
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J-Pouch ForumsGeneral Discussion
3 blockages in 4 days...Codine?
skn69skn69
Jan Dollar Sure morphine and other opiates help, but if you get stopped by a measly 40mg of codiene, you certainly cannot take the stronger stuff. You might be able to tolerate tramadol, but it has similar side effects as the opiates, plus it can stimulate seizures if you take SSRIs or tricyclic antidepressants. You can try any of the NSAIDs and see how you do, but they all can potentially cause liver and or kidney inflammation (they definitely will work a LOT better than Tylenol for you, and it is... [ more ]
skn69 I gave in and called my GP in tears this morning. He will see me tomorrow to find a med that I can take that will not stop my pouch cold. He is also giving me a letter to a Rhumey and a run of 1 week prescription anti in flamatories...is there anything stronger than tylenol that does not stop intestinal motility? He is offering me anything at this point if I can take it? Do opiates or morphine help? Thanks for the suggestions Jan, I have a matress topper but not a memory foam one, will try... [ more ]
Jan Dollar One thing I found to literally save my butt was a memory foam mattress topper. We have a sleep number bed, but even that was not good enough for me to be comfortable through the night. The memory foam softened the surface, while still being supportive. Otherwise, every body part that rested on the mattress felt bruised after an hour or so, even while taking NSAIDs. I also use a small, firm pillow to support my low back when on my side. Hope the chiro helps. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Human Waste Transplant!
FM Former Member
Jan Dollar Not new at all, but not a common treatment. There have been numerous discussions here about it, but it was referred to as fecal transplant. Jan [ more ]
Pouchomarx This is not new, they have been doing this in other countries for bad cdiff infections and is now gaining steam in the US [ more ]
Rocket Justin, I've heard of it. In fact I even discussed this with a GI Nurtrionist but since I already had a pouch, I was not a candidate. However, in thinking back to my UC days, if a doctor told me this would cure my UC because there have been many documented cases, I would want the names of the doctors and patients and if it was all on the up and up, despite how disgusting this looks, yeah I would go for it. R [ more ]
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J-Pouch ForumsGeneral Discussion
CBT for Irritable Pouch Syndrome
S Subzeromambo
Subzeromambo I am trying one more local GI and then off to Bo Shen. I am having a lot of malabsorption issues that I do not think are normal. Thank you for sharing your story. It gives me hope. [ more ]
liz11 How did they get to the IPS conclusion? Did they rule out all other pouch problems - pouchitis, mechanical problems with the pouch, ishemia, etc.. I firmly believe that not many colorectal surgeons or general GI docs really understand the full analysis and diagnosis of pouch problems. I went through 5months of $%&^ immediately after takedown when my surgeon threw me out of his care saying everything was anatomically correct and then my supposed guru local GI and "pouch expert" diagnosed... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's Treamtment with J-Pouch
G GKatzz
LisaT I have had my pouch for 17 years and about 3 1/2 years ago I started to have pain and other issues. I was on Entocort for 2 years with no improvement. I've had 4 Remicade infusions and I THINK it's working. You can go from Remicade to say Humira, but you can't go back once you've ceased to use it. [ more ]
GKatzz Thank you! That helps me a lot! Gary [ more ]
Jan Dollar I take Simponi, but I don't think it is approved for Crohn's (yet, but phase 3 trials indicated efficacy in UC). I like it because it is once monthly injection. Remicade is by IV infusion only, every 4-8 weeks. Also, it is mouse protein based, so more likely to cause allergic reactions and antibody formation (reducing effectiveness over time). Still, it has been around the longest, so has the most data. Humira is approved for Crohn's, but treatment is every other week, weekly for some (I had... [ more ]
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J-Pouch ForumsGeneral Discussion
i cant do this anymore. please help me.
W wiggles
Karbear I can still remember those hopeless days and nights. It's very hard when day after day you are experiencing discomfort and pain. It's hard to look just one day ahead let alone weeks, months, or even a year. My only suggestion is just because you have tried something once doesn't mean it isn't going to work for you in a couple of weeks. Keep revisiting some of the great tips you find on this site. Some may start to work after some time. Maybe, maybe not. My best tip is to take hot baths. It... [ more ]
wiggles thank you karbear. i want to be happy and start feeling better so badly but clearly i have a hard time communicating properly on here but i need you guys and im willing to do what it takes. [ more ]
Karbear wiggles, I don't get on much anymore, but tried to catch up on your posts. The beginning of my recovery from takedown was very slow with lots of bumps along the way. I had cuffitis, abscesses, fissures and pouchitis. Still today I suffer from chronic pouchitis and frequent abscesses. I can say it does get better, it just takes time. I noticed for me the hc suppositories constipated me. I also had a lot of problems passing stool with both pouchitis and cuffitis because of the inflammation. [ more ]
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J-Pouch ForumsGeneral Discussion
Out of the hospital but...
bootstrapbootstrap
mgmt10 Chocolate is the one thing that sends me to the bathroom more than usual. I will never give it up though! Glad you are feeling better. Hope all goes well with the ct scan. [ more ]
bootstrap Thank you for the support, Ladies & Gents. I'm actually feeling pretty good aside from the air still trapped in my abdomen, which is quite uncomfortable 24/7 - I guess that's kind of contradictory, huh? I will get to see at the CT in two days if the air has gone down at all. I did a little research on it and found out that although these things often resolve themselves in 6-12 days, it can sometimes take several weeks for all the air to absorb, so as long as the air pocket is getting... [ more ]
TE Marie Kudos for facing all of your problems head on and doing whatever you need to solve your problems. About going back to work in 3 weeks please don't push yourself too much when you go back. If you are able to go back please start out part-time. [ more ]
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J-Pouch ForumsGeneral Discussion
upcoming takedown..help!! :)
F FrustratedButFighting
FrustratedButFighting Thank you all for your great tips! Hope everyone is having a good day God Bless! [ more ]
nocolon-2000 You're on the downhill side!!! Get some Calmoseptine. Hot water spray can be your friend as well. Rather than wiping, spray off then blot. Don't count bathroom visits. You will start out with a lot and it gets better over time. Chew, chew, chew! Careful with foods at first. Drink drink drink. When you pee, you will poop. When you poop, you will pee. Sit. I do remember right after my pouch took over from the ostomy, I would get killer pains in my pouch when things would "move in". Best way to... [ more ]
Manchester Congrats on your takedown. I went from UC diagnosis to all in one j-pouch inside 13 days so didn't have much time to get worried but just think how much of your life you will have back. Like I said I only had UC for 2 weeks but they were the worst 2 weeks of my life. I was in hospital for 10 weeks all in all but I wouldn't change it for the world. My pouch (Bigglesworth as I call him) is a joy to live with. I eat what I want and he empties everytime I BM. Everytime you get panicky just take... [ more ]
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J-Pouch ForumsGeneral Discussion
Decided yesterday to have colectomy next week
P Pluot
TE Marie You sound great How crazy is it to schedule surgery and not have a room ready at the inn? Hopefully you'll have one soon. I think it's the first time I've ever seen anyone post from the recovery room! Sweet Dreams [ more ]
Pluot Yeah, I'd say it worked... with a VENGEANCE. It was actually only my second prep ever and I idiotically started drinking way too late. I almost wasn't able to leave the house on time in the morning. Oh well, that's all in the past now! [ more ]
Scott F Congrats, Liz! I guess the prep must have worked. ;-) After my surgery I always pushed the button until it stopped responding. That's how I knew it was time to ask for the dose to be increased. Pain is overrated. [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl- so gross tasting!!!
Uc-DanielleUc-Danielle
Uc-Danielle Liz it's been a week since my last EUA and he had to put another cutting seton in and I have to go back in 8 weeks I'm still sore and he described it as happy but not ecstatic lol so dr.remzi....the only good thing that came out of this was seeing dr.remzi and dr.messik I just love him haha such a school girl crush [ more ]
liz11 Yes, I had the same issues with flagyl in IV form. It would wake me up and I would "taste" it and get totally naseoaus. They had to discontinue it, because they figured out it was absolutely killing my ability to eat anything. The TPN doctors kept coming in and saying even though you are on TPN you still have to eat. And I just couldn't. Well finally one of the colorectal docs pulled the flagyl iv... and sure enough I could look at food again. [ more ]
Jan Dollar I get that funny metalic taste, but just try to ignore it best I can. I also think it is more than just contact with the tongue, because I could taste it even when I got it IV. I would be sleeping and would wake up when they started the drip, and told the nurse, "you're hanging the Flagyl now, right? Because, I can taste it..." But' for me the best way to deal with it is by putting something tasty in my mouth, like hard candies, mints, etc. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
gut friendly antidepressant?
W wiggles
suebear See, and I tolerated Celexa very well; I took it for 4 years and didn't have the symptoms you describe. Not all antidepressants treat all forms of depression. Some are tailored more for anxiety or sadness. Your doctor will prescribe the best drug to treat the symptoms you are exhibiting. If that drug negatively affects your output, try taking it with food. Sometimes we just have to make things work for us, even though it can be an inconvenience. Sue [ more ]
kathy smith Again, different antidepressants work differently for different people. I take generic Zoloft and it works very well. All you can do is give each a chance. If you notice a bit of discomfort when you start taking one, you could try to tough it out for a few days to see if it will settle in. The problem with starting and stopping antidepressants quickly is that many of them don't have the desired effect for up to 6 weeks. That's why it's very important to try to stay on one. Just because... [ more ]
Av8erchic I've taken both Wellbutrin and Prozac both (at different times...) after I'd been diagnosed with UC, but only had Prozac after my colectomy/ileo/pouch and haven't had any problems. [ more ]
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J-Pouch ForumsGeneral Discussion
Way TOO MUCH GAS
R Rocket
Jan Dollar S. boulardii is different because it is a yeast, not bacteria. It is has been shown to be useful in treatment of infections of C. difficile, H. pylori, and travelers diarrhea. It is not included in VSL#3. Whether you need it or not, I have no idea. And sure, it could cause more gas. Again, varies by each individual. Here is a medical journal article that reviews it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296087/ Jan [ more ]
Rocket Hi Jan, One last question. I am currently taking VSL #3 packets a Probioctic which has 450 billion live bacteria. The S Boulardii, a Probioctic that has another 5 billion per capsule. I think if I remember correctly, and correct me if I am wrong, you take Align Probioctic. Does the S Boulardii have something additional to most of the other probioctics do not have? I am just concerned because I don't want to take something that may cause additional Gas. Before I order the Boulardii, I just... [ more ]
Rocket Jan, OK thankks for the Info. Am feeling better today. Rocket [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Active Enteritis
B Bish
Jan Dollar The problem is that "negative for Chron's" does not mean it isn't Crohn's. It just means that they cannot confirm Crohn's. Still, this could just be pouchitis. If you HAVE been taking NSAIDs more than just the occasional dose, this could be due to that, and it should resolve if you avoid NSAIDs. The treatment plan makes a lot of sense to me, particularly if antibiotics are not working for you. But, I can see your reservations about steroids, even at a small dose. So, I think discussing what... [ more ]
Bish The tests showed negative for crohn's. I called for my test results, they told me that they typically don't do follow up appts to go over test results. I think he wants to see how this works for 30 days, then we'll go from there. I will express my concerns about the steroids. Thank you for help! [ more ]
Jan Dollar This is sounding like Crohn's disease. It may not be it, but something similar, since Crohn's is often described as regional ileitis. Usually with Crohn's you need maintenance medication. Not necessarily steroids, but something. I can't believe that Dr. Shen would keep you on Entocort any longer than necessary. The good news is that Entocort is considered basically topical and poorly absorbed. What does Dr. Shen tell you about long term plans/goals. Generally, they say to avoid NSAIDs with... [ more ]
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J-Pouch ForumsGeneral Discussion
Self Dilation Kit
V Valentine
Jan Dollar Which ever finger fits. You would not perforate, as pain would prevent you from going beyond your level of comfort. The idea is to dilate daily to prevent the stricture from reforming. Once it is there, you really do not want to be forcing anything in there. If you cannot get your smallest finger past the stricture and you are having symptoms, it is time to make another appointment. It is better for the doc to dilate again early than wait for it to become critical. At that time, you can... [ more ]
Jan Dollar I am sure it would be more fun, but you are correct that it would not help the anal stricture. Jan [ more ]
jeane Ooh my ignorance. Sorry. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchoscopy
S Stone
Holly M Scope went well. No sedation. Doc took a couple of biopsies and will call me in a couple of days with the results. He is hoping the 30 day round of cipro knocked out whatever was going on. I sure hope so. If all stays calm I don't go back for 6months. I sure hope that is the case. [ more ]
Stone Hi there let me know how everything went good luck. [ more ]
Holly M I have my first one today at 11:30, very nervous. [ more ]
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J-Pouch ForumsGeneral Discussion
how to get same results from oatmeal?
fqfq
jdgrimm ❤️
Av8erchic As Jan said, I know that some people are worried about carbs. But....I always make sure to have a lot of carbs throughout the day and it seems to help bulk everything up. I'm just a couple weeks past my takedown, so I know my situation isn't perfect yet by any means, but it's helped a ton so far. [ more ]
Jan Dollar No, it shouldn't. That is because bulked stools still are moist. The bulk give something for the gut to contract against that is not irritating, like vegetables. Oatmeal is full of soluble fiber, just like Metamucil and Citrucel. Rice too. But, if you don't want to eat a bunch of carbs all the time, soluble fiber supplements can provide the same bulking without the carb calories. Most post op folks are not worried about carbs, but if you are concerned about too much weight gain, or want less... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Kidney Stones
S Srf1
Srf1 Thanks for the info Rocket! Still waiting to pass the one I've been dealing with. The sucker will move for a day then takes time off for about a week. The xrays and CT scans show that it's moved significantly though over the past few weeks. Hopefully not much longer till it's out. My Urologist says the remaining two in my right kidney are very, very small. They only show up on the CT scan and hopefully won't be a problem to pass. [ more ]
Rocket srf1, Yup, that is what I was told too since we cannot absorb liquid. Then because of that, I crave salt but have to watch that too. I had a 3 step surgery in 1993-1994 then a major bowel obstruction which should have killed me as I lost 32 inches of small bowel due to gangrene. I get kidney stones quite frequently. Four times I had to have them blasted out using the Extracorporeal Shock Wave Lithotripsy (ESWL) for Kidney Stones. That is because these stones were more than an inch in... [ more ]
Mason&Mara'smom I had my surgery a little over 5 years ago and I have had more than 15 kidney stones. A few months before I had surgery I was told I had about 8 stones between my two kidneys and it is common for UC or Crohns patients to get stones when they are on steroids. I had been on high doses of steroids for over 5 years before I had surgery. It wasn't until I was about 4 months out from my first surgery that I had to deal with the first attack of the kidney stone that was about 7mm. I have gone to... [ more ]
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J-Pouch ForumsGeneral Discussion
Passed Out From Dehydration
CTBarristerCTBarrister
CTBarrister It's funny but when I passed out in the early a.m. of 12/31/12 as described in my initial post in this thread, I don't know if I was sitting on the toilet or whether I had stood up from sitting on the toilet. The last thing I recall before passing out was sitting on the toilet seat. My injuries (specifically a big scab on my right knee that I still have!) suggest I may have slumped forward from the sitting position on the commode, the knee fortunately cushioning some of the fall and then my... [ more ]
TE Marie A couple of days ago I fell asleep, didn't pass out, while sitting on the pot in the middle of the night. When I woke up my feet and legs were asleep up to my knees, I couldn't move! I eventually got them to "wake up", it doesn't sound bad now but was scary at the time. I think passing out would be much worse! Stay hydrated everyone! [ more ]
TE Marie I'm sorry about Becky's recent surgery and pray it isn't crohns Even though I have not been able to do anything but it's still better being here than at home where there are projects and all sorts things that need completed or done. Nothing here and it's a beautiful pretty new townhouse condo. No 13" snow storms either! [ more ]
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J-Pouch ForumsGeneral Discussion
Updated J-pouch Statistics
P Pkitty
Holly M Good article. [ more ]
TinCan This is a link to an abstract of a brief review article that may provide some of the information you are looking for - although it is not comprehensive by any means. It seeks "..to highlight such advances in colorectal and anorectal surgery for IBD over the last year". I was not able to find a link to the full article online, but I didn't try very hard either. I obtained my copy via a subscription service. Anyway, here it is. [ more ]
gleam I went to Cleveland Clinic Weston and had Dr. Steven Wexnar perform the surgery. Honestly, it's a very long road to normalcy and I am not at the point yet where I can say the surgery, pain, and hoops I had to jump thru were worth it. The memories are too fresh and my body has not fully adjusted yet. The pros are that since returning to work mid November I have not called in sick once! By this time without surgery I would have called in 2.5-3 weeks worth. So in that regard there are... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
6 weeks since takedown and confused
S Shannah
gleam Your story sounds amazing. You are very blessed! [ more ]
Rocket Wow you are very lucky. A good day for me within a 24 hour period is going to the bathroom 8 times a day. Sometimes, I get up once a night, but ususally is 2 times. Then when the alarm rings I go again. I eat breakfast and go again. So that is 3 times if I go once at night. I eat lunch, I go again, Before I drive home from work, I go again. That is 5 times. I eat dinner, I go again. Then I usually go 2 more times before I go to bed. That's 8. Of course I go so often because 5 years after my... [ more ]
Valentine I am very happy for you!!! Happy healing, I am sure you deserve it. [ more ]
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J-Pouch ForumsGeneral Discussion
Abx causing stomach/pouch pain--probably a Jan question
ConnieConnie
Jan Dollar Ugh! What a pain! Not good when the treatment is worse than the disease!! Thinking about you guys! Jan [ more ]
Connie Stopped the infusions altogether Jan 11 (5 weeks), because they were making him feel very bad, and infection seemed to be gone. Four days later, it appears to be coming back. Infectious disease doc ordering IV infusions to resume with Daptomycin ASAP. Alhough side effects may be similar, hoping we can hold off infection long enough for the bone to heal before they have to remove the plate. Going for x-ray today to check the status of that. Naturally the foot surgeon is out of the country for... [ more ]
Connie Jan, you are exactly right--the levels have consistently been high. He stopped the infusions altogether for 24 hrs, then resumed a dose that has been lowered for the second time, starting yesterday. Stomach/pouch pain decreased, then increased when infusions resumed. Guess we'll wait and see. [ more ]
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J-Pouch ForumsGeneral Discussion
burning lower left abdomen
W wiggles
Jan Dollar If it is where your hip bone is, it may not be gut related at all. Sounds more like tendonitis or arthritis then. Burning sensations are usually nerve related. If your doctors are aware of it, it probably is nothing terribly urgent. Jn [ more ]
wiggles ive been asking docs for years. have an appt with a great gi on the 22nd. maybe hell be different... [ more ]
mgmt10 Sounds like a question for your doctor. Especially if it hurts that bad. [ more ]
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J-Pouch ForumsGeneral Discussion
Showering with ostomy
C Cate87
CeeeeCeeee I, too, showered without the bag which gave me a chance to rinse it out....although I was told it wasn't necessary. If my stoma became active during my shower, it didn't bother me. Since I showered in the a.m. before breakfast, it never was that active at that time of day. Every seven days when I changed my wafer, I showered without anything "glued" to me. What a pleasure! [ more ]
nocolon-2000 Way back when...I always took the bag off and kept the wafer - like others have said. When it was change time, I took it all off and showered allowing the hot spray to hit very directly around the ostomy area. It was wonderful! Afterwards, I just toweled and blotted the area the snapped the bag back on. Be well! [ more ]
AyrishGrl I have always showered without a thought for my covering up my bag. On days I don't change the whole appliance I just put a dry bag on after I get out (I use a 2 piece) and I use a blow dryer to dry the flange. On days that I change the whole thing I shower "naked" to get my skin nice and clean. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Cuffitis? Something else?
T Twinstar
Twinstar Thanks, Jeane. It is really helpful to hear what you've been through and I am so sorry that you've not responded to treatment Other than this site and a few studies pubmed, there isn't a lot of information on cuffitis out there... [ more ]
jeane Sounds exactly like what I have been battling for months. I have chronic cuffitis that is pretty resistant to treatment with canasa and hydrocortisone suppositories. I also have a fissure and use nifedipine daily. Both pouchitis and cuffitis can increase your frequency and cause discomfort. Sometimes if you have been on one antibiotic for a long period, you may need to switch to another one so it does not lose it's effectiveness. This often takes time to sort out. It can take several weeks... [ more ]
See all 2 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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